Lyme

Multiple Chemical Sensitivity

2012-01-15T18:43:00.000-08:00

A really interesting report by the Canadian Human Rights Commission about Multiple Chemical Sensitivity and other Environmental Sensitivities. It's long, but really interesting. I'm just posting it here because I suspect I'll want the link later on.

an idea

2010-11-07T07:21:00.000-08:00

Knitting, spinning, weaving and crafting in general has done so much good for me over the years. Especially since I became really ill, it has provided me with nourishment that no medicine or food ever could.

Being a member of the yarn related community, both local and online, provided me a link to steadfast friends and wonderful support.

Yarn encourages me to accomplish something in my day. I'm not just wasting time waiting to get better, I am making socks, or a skirt, or something else. I create something tangible - and I know that's nothing to most of you who can do that any day, but to me, that's a huge accomplishment! It means the world to me to be able to pull on a warm sweater that I knit myself, or to adorn myself with vibrant socks that I not only knit myself, but I spun the yarn. It fills me with a sense of love and self worth that otherwise leeches out of someone with a long lasting illness.

But it's more than that.

When I am so ill, I'm nothing but a useless waste of space, I can still create something. I can knit a few stitches, or pull myself out of bed to lay on the couch and spin yarn. Even if my arthritis is so bad that I can only manage sparse five knitted stitches, it is still a contribution. It's marks the difference between being a worthless waste of skin to being human.

I wish I could explain it better.

Lately I've been spinning some yarns for sale. I want to make a bit of money so I can afford Christmas. One particular yarn, is rather challenging. It is involves making two yarns at once and plying them together simultaneously. I feel like an overtaxed octopus trying to do all this at once, but the results are gorgeous. And, it gave me an idea.

Now, this is just an idea at the moment. As I said yesterday, I'm not an organizer of big things. I realize that of myself. Give me grunt work, and a task I can do in the background, and I'm happy!

The idea:

It began by thinking that making yarn and other crafts to sell is one of the few things I can do to make my own income. I don't make very much - just enough to buy more supplies for my hobbies - but even that little bit says to me that I can one day become a functioning member of society again.

This got me thinking about how much better things will be when Lyme is understood. When the political controversy no longer governs treatment and an accurate diagnosis method is available. Organizations like CanLyme are working towards this, and wouldn't it be great if I could donate money to help them help people like me?

So I imagined myself spinning a special series of yarns, all different kinds and colours, all with at least a fleck of Lime Green in them to symbolize Lyme. And I take this yarn and put a little write up about Lyme in Canada and how lack of research is causing harm...stuff like that. I sell the yarn, and take a good percent of the profits and give to CanLyme (or the like) and a percent to pay for my health care. (note: most Lyme patients in Canada have to pay for their own medical expenses!)

That could be a nifty idea and a great project for 2011. It would help raise Lyme awareness, help support my health care costs, help raise money for charity, and most importantly, make me feel like I'm doing something to both help my state in the world and help the greater cause.

I think I might do this. I know I can usually get fleeces for free, and I don't mind washing and preparing the fibre for spinning. Dyeing the fibre might be an expense and it's beyond my skill set, but perhaps someone might volunteer their time and facilities? If I want a long wool like Cotswold, Romney or a Leicester, I might have to pay for that. But all in all, it's a low cost investment as all it would take is my time (something I have plenty of) and my energy (a resource that waxes and wanes) .

The more I think about it, the more I feel it's a good idea.

But, what if...

What if it went a step further?

What if several people with Lyme did something similar, all organized under one umbrella? Not just spinning, but knitting and weaving as well? Then we did as above? Sell the yarn, give a percent to a Lyme related charity and a percent towards our own treatment. Could this work? Could, given our illness, we do this? Would a project like this not only raise awareness of Lyme in Canada but also give those victims this this vicious pathogen a sense of purpose and a way to feel empowered?

It's not just the people with the illness who feel hopeless, their family, firends and support network also need a way to help. This might be the kind of thing.

I see problems with this greater idea: One thing that comes to mind is that I'm not a leader of men, woman or children. If we did this, I would need someone to take the lead, but I would still want to be consulted in it's organization and implementation. Not to mention, the leader of this movement would have to have a non-Lyme brain. There are other problems I see already, mostly where money is concerned. And who would do the write up about Lyme awareness and the project? How would it be presented to the public? Free knitting, weaving and spinning lessons would be needed for those who do not yet know how to do these things. Plus equipment: spinning and knitting are affordable, but weaving certainly isn't.

There is a lot to think about.

Thoughts anyone?

Seeking

2010-11-06T10:38:00.000-07:00

Seeking someone in the Victoria area who has had Lyme, has Lyme but with moderate to mild symptoms, or has someone in their life with Lyme, to work on a project that will increase Lyme awareness across Canada, and help raise funding for Lyme research and treatment. Must have experience organizing people and events. Good communications skills is required.

I have an idea. It's just an idea at the moment, but I think it could be worked to raise awareness of Lyme, to help Lyme patients have a feeling of participation in their recovery, and to raise money that would go to an organization like Can Lyme and hopefully towards the participants as well. It would be a year long project starting New Years 2011.

But, at the moment, it's just an idea.

Organizing things like this is not my strong suit. I'm more of a come up with idea and then do the grunt work kind of gal.

If you would be interested in a project like this, please leave a comment (I moderate all comments that come to this blog before they are published, so if you don't want the comment published just say so).

edited: spelling and clarity.

Soon

2010-11-04T08:24:00.000-07:00

I do need to write about Teasel soon. And I will. I am just waiting to see what sort of effects it has over a period of time, rather than jumping in after a week and telling everyone how super this is and possibly regretting it later.

Anyway, if you want to get a jump start on reading: Healing Lyme Naturally is the book I started with.

I'm not thrilled with it, to be totally honest. It makes suggestions that I consider dangerous for someone with no medical grounding. But there is good information there as well.

My recommendation in reading this book is that you don't do it with a Lyme Brain. Don't trust everything you read, but instead, be critical.

In my case, I fully disclosed my actions to my doctors and told them all about taking Teasel. They weren't bothered about it either way, mostly because they don't know much about it. But remember, 'harmless' supplements and herbs can have dangerous drug interactions... and I can find very little research on Teasel in this regard.

CBC on Lyme

2010-10-27T09:43:00.000-07:00

CBC video on the real number of Lyme cases in BC

Some things that have helped my Lyme

2010-10-26T08:14:00.000-07:00

Lyme affects everyone differently. That's one of the reasons why it's such a bitch of a disease.

There are so many schools of thought on how to treat Lyme, many of which I have tried in one form or another. Most of which, I must admit, made me worse rather than better. But there are a few things I've tried that did offer improvement.

For example, the IV vit. C thing really helped when I was at my lowest point of health. It didn't provide miracle but perhaps that was because I didn't take it often enough or strong enough doses. Then again, maybe it was just the rehydration and extra vitamins it provided to me when I was in a malnourished state.

Long term Antibiotics did a great deal of good for me. They tipped the balance, putting me on the path to better health. They really did save my life. But it got to a point where they weren't helping any more. In fact, eventually the side effects from the drugs were causing more harm than good. It was at that point that we decided to stop them.

It is possible that the Lyme symptoms that remain are simply permanent damaged from having the infection so long (20+years) or even other genetic conditions that have been aggravated by the long term pressure on my immune system. Or, the infection might still be very active. We are currently at the point where we are investigating this.

If I had to choose one thing that had the most influence on my health so far it is lifestyle changes: Specifically my diet and environment.

Before I even knew I had Lyme, I began working on my diet. I knew something was wrong with me and had hoped that it was simply a food sensitivity. Isn't that the natural place to start looking when you have a grumpy immune system and chronic fatigue?

I began by cutting out all dairy (a food I've always been sensitive too), wheat and soy from my diet. It had a small beneficial effect on my health so we dug deeper. There are blood tests you can do (for a few hundred dollars) to judge your immune response to different foods. A naturopath can order this as well as some family doctors. I had high and moderate IGG immune responses to about 14 different everyday foods. So, with great difficulty, I cut these out of my diet as well. Doing this pretty much stabilized my condition. It reduced the load on my immune system which allowed the antibiotics to start working.

My personal opinion on the matter: It is worse than useless to try to cure Lyme with antibiotics unless you modify your diet first. The Lyme infection is just too strong and the body cannot fight it if it is also fighting your food choices.

But then again, that is my personal opinion. Everyone is different and must choose their own path... but maybe...when Lyme is such a horrid illness... why not do everything possible to help your body recover?

It turns out that wheat was not one of my wrong-foods after all. The beneficial effect I had from removing wheat from my diet happened because ....... well, when I buy flour I assumed that I was buying a bag of ground wheat. In fact, I was buying a bag of ground wheat with a whole bunch of additives. It is like how they now put soy in cinnamon for some reason. When buying ingredients, you have to be certain to read the ingredients list. It's very annoying.

Ones environment has a huge effect on the immune system. There are a lot of toxins in the modern world. New clothing is treated with fire retardant and sizing (both highly toxic), as is carpet, the mattress you sleep on, person hygiene products... it's a long list.

What I had success with: got rid of the carpet in the house and replaced it with wood flooring (bought at the local floor auction for less than new carpet would have cost), changed my clothes to all natural fibres, replaced my mattress with a wool one, got rid of all stinky things from the house and replaced all cleaners with ecofriendly ones.

Another factor that made a difference was dirty electricity. I got rid of the electric clock and make certain that just about no electrical devices are on in my room while I sleep. Also, we opted not to get wireless internet in our home and I'm very keen on replacing some of the portable phones with wired ones.

The environment is harder to change than diet, but just as important for relieving stress on the immune system and giving it a chance to fight the infection.

Staying active and motivated to do things everyday was one of the more difficult aspects of recovering. It is also an important step and one I took great efforts to make. It began by making certain I did a little bit of yarn time every day. No matter how much my hands hurt, I spent a few minutes knitting or spinning or doing something that I enjoy. Crafts are good because you're not just doing something, you are making something. It's beneficial for the spirit.

When we got chickens then I had to go out at least twice a day and see to them. It's not a huge thing, but being a place where I had to do something every day, even a small task like feeding and watering a few birds, motivated me to try more things. Even on my worst days, when I couldn't physically accomplish the task on my own, I would still go out and be there while someone else saw to the chickens. That way I'm out of the house at least twice a day and I get so much joy out of watching the birds scratch in the yard.

Biofeedback has also helped with pain management and stress reduction, but I find it difficult to motivate myself to use it. Mostly I just use it when the pain is too great that I cannot sleep.

More recently I've had success with two other treatments.

Microcurrent treatment has been very good for joint pain. Especially because I can no longer tolerate pain pills. I understand that they also have a Lyme protocol.

And finally, I've recently started taking Teasel. So far, this has had a very good effect.

I'm not saying that Teasel is a miracle cure for Lyme and I'm not saying that this is for everyone. In fact, I'm not saying much of anything about it just now. I'll devote a post to it in the next little while where I hope to discuss the effect it has had on me so far, my musings on why it is working so well so quickly, and of course my doubts as to how good this will get.

In conclusion: I'm not all the way better. I'm not even well enough to be a functional member of society. But compared to how I was when I started this blog, there is finally hope that I might recover enough to do something productive with my life.

people - Sartre was right

2010-10-22T08:27:00.000-07:00

I know, to some people in my life, it seems that I'm not doing anything to improve my health. But I think they have the wrong end of the stick.

Some of them worry that I don't eat healthy because I'm not 'willing' to eat a piece of cake or to heat up a pre-fab frozen meal. Because I eat a restricted diet that avoids most fresh fruit in favour of cooked fruit, they sometimes think that I am making myself sick. The fact is that I've been over my diet in detail with 2 dietitians, 1 nutritionist, 3 naturoptaths, 2 gastroenterologist , and several nurses - all of whom highly approve of my diet.

Not to mention, I am always trying new foods.

I manage my symptoms first and foremost through my diet, and it works.

It's just annoying that when I spend a night awake and in intense pain because I cheated and ate both tomatoes and potatoes in the same meal, then someone, as an attempt to comfort me(?), tells me that I don't eat enough potatoes and that I really should eat more fresh tomatoes. They say this while they are scoffing down highly processed cookies and then later wonder why their blood sugar numbers were so high.

I tell you, some people have no grasp of cause and effect.

It is assumed that I pick and choose which foods I like to eat and then model my diet around that. Not true!

Foods I love, nay, adore, but cannot eat include: chocolate, garlic, beer, fresh fruit (gives me blisters - cooked is fine), nuts (cannot chew them), take-out pizza, Lipton's Chicken Noodle Soup, peanut butter, sesame seeds, SUSHI, Just about every Japanese food save Tofu, Potato chips, cheese puffs, Gold Fish, Beef... and of course, dark chocolate champaign truffles.

It is very frustrating to be told I'm doing something wrong by someone who doesn't understand what's going on. Why can't I cheat and have a chocolate chip cookie (which is being waved in my face and smells yummy which is so tempting for me)? I explain that the last time I cheated and ate garlic, I ended up in the ER 3 times, and hospital for a week. The person mumbles that one little cookie is not going to hurt me - as if I was trying to insult them by refusing the wrong-food.

You see, this person is a diabetic and has been for some time. Instead of avoiding sweets and processed foods as the doctor advises, they cheat on their diet several times a day and then wonders why their blood sugar fluctuate so much. They could stop eating wrong foods and very likely rid themselves of most of the problem - but instead they are constantly looking for the next magic pill that will cure them while they continue with the behaviour that causes the symptoms (and possibly in their case, the illness).

Speaking about magic pills. This is another annoyance I have with some of the people in my life.

Thank you for taking an interest in my health problems. Even if you didn't believe me when I told you that arthritis is a major symptom of Lyme the dozen or so times I told you over the last few years. You do believe it now because you finally read it in the news paper.

If the newspaper said so, then it must be true - the half dozen health professionals I've seen and the books they told me to read are obviously lacking the necessary credibility. And sure, it really helps that you now tell me four times a day that it hurts because of the Lyme. Something I already suspected, but never really felt confident about because the local rag (that cannot even get the weather report right) had not printed anything about it before.

But what I really wish, is that you wouldn't take it as a personal insult if I don't jump with enthusiasm at the latest magic cure you tell me about.

It is not that I don't appreciate that this is how you try to share in my life, but you could find a better way to do so.

You see, I've already heard of magic pill X. Not only that, I've already taken it at least two years ago.

Buying a far more processed version of the herb/medicine/treatment at three times the price, is not likely to make it work any better. Besides, 'more processed', usually means 'more soy' and since they don't label the ingredients - I can't safely take it.

So yeah, I'm not interested in the 'new' magic cure. It's going to cure me in two weeks, but I've already tried it for several months. They are just trying to take your money and feeding off the empty hole left by the medical profession who fail to take Lyme seriously.

From my point of view, it looks like you don't think I'm doing anything to help my health. Which is very annoying coming from people who complain about things that they are more than able to fix, but too lazy to do so. It's like these people need to have something to complain about rather than to act. And, lately, it feels like I'm that latest thing.

Funny, because I go out of my way not to complain or talk about my health on a daily basis. I don't like thinking about it and complaining about it just reinforces the despair. That's one of the reasons I don't blog here very much any more.

All the pills I've taken, all the treatments, all the care in my diet and environment, that I am slowly improving, and the fact that yes, I am still trying new 'cures' all the time --- all this counts for nothing with them. And I do love them. I just wish they would respect me and trust me.

Because, it is just possible that I know a thing or two about what I'm doing. ...

.... But then again, I am female and I am younger than them, so obviously I know nothing about male dominated areas like medicine, agriculture or mechanics.

Sorry all. I just needed to rant.

Apparently, everything is Lyme

2010-06-03T08:27:00.000-07:00

I've been avoiding thinking about medical stuff as much as possible since my recent visit to the hospital. Thinking about health makes my symptoms worse. But then again, so does not understanding something. So, I thought I would look up the latest chapter in my saga.

I have a tentative diagnosis of Crohn's. Well, it's an "in my opinion you have ..." diagnosis from the gastroenterologist (edit: because I trusted my spell checker and it thought I was talking about something else entirely) who apparently knows a thing or two about it. There's one more test to confirm the diagnosis but there is a wait list of over a year for non-emergency use.

From what little I understand, Crohn's has something to with chronic inflammation. Just like what Lyme does to me. Crohn's also causes weight loss, poor digestion and pain. Lyme is also causing this. So which is it? Is the Lyme in my gut making the inflammatory party or is it simply Crohn's? Or is it both? I'm confused.

It depends on who I ask as to the answer.

There was a psychologist that said something like that: we decide what answer we want to a question by picking who we are going to ask the question of. Was that Adler?

There is this tiny Lyme and Crohn's article on CanLyme.

I wonder if Inflammatory Bowel Disease like Crohn's can cause or contribute to other symptoms like Chronic Fatigue or my food sensitivities?

I wonder what holistic treatments there are for this.

Positive support

2010-05-24T10:41:00.000-07:00

The first bit of news is that the good people at Knotty by Nature have offered a venue and a knitting teacher/mentor for those interested in a Lyme support group. The teacher wouldn't be all the time, just the first few meetings, but it would be free to all who are interested. It doesn't have to be just knitting either. There are all sorts of hand crafts that one could learn how to do. There might even be tea.

As I mentioned before, I would love to be a part of a group of people who have Lyme or know someone with the illness and get together once a week for a few hours to play with yarn. I think it would be a wonderful opportunity to develop a support group around a positive activity.

I would love to hear from anyone interested in participating.

The second bit of news is that I'm frustrated at how slowly I am recovering from my recent setback. But at least I'm getting lots of tatting done. That's something I suppose. A support group would be a great help right now.

Oh, and before I forget to tell you again, this is VERY good. Way to go Nicole!

a prickly interaction and more thoughts on Teasel and Lyme

2010-05-15T08:26:00.001-07:00

I got into an argument yesterday. I tend not to get into many arguments these days but that's just because I don't interact with that many silly people.

I seem to get into arguments with people in a position of authority. I don't mean to. It's just that sometimes they are stupid and since I came to them for advice, I don't let them get away with being stupid. I mean, an expert on something should have more information on that something than I do. Right? That's why we suffer experts, so we can go to them for help and advice at times of need.

I've been reading up on the Teasel cure for Lyme. It looks good. I don't know if I believe the miracle status it holds, but I think it would help. At the very least, it's worth the try and the herb is very affordable if you buy just the dried roots. I'm going to make tea; but not just yet.

Recent events have left me humbled and discouraged. I can't think of any way I could have prevented the recent hospitalization with the knowledge I had prior to the event - and believe me, I've thought about this a lot. But it has taught me that I need to be more aware of the potential harms of what I take and what sort of symptoms I should look out for.

This is exactly what I asked my local herbalist. What are the contraindications (I think that's the word I'm looking for) of taking Teasel?

She said there are non. It cannot harm you.

I said that's a load of bull... well I said it slightly more politely. Everything has potential harm.

She said that's just not so. (again, not in those words - I'm using poetic licence for the sake of keeping the narrative simple and interesting) Then she cited examples such as spinach and stinging nettles.

I said, those are great example of things that can cause harm. The O-- acid in both of them prevent the absorption of iron by the body. Besides, people on low fibre diets are told to avoid too much spinach. Even something as benign as water can cause great harm when drunk in excess.

At this point, frustrated by me, she lead me to the book shelf and handed me Wood's book and told me to read the section on Teasel for myself. Apparently because he has no mention of any potential harm that Teasel can cause, it has no potential harm (the fallacy: absence of evidence is not evidence of absence.). Then again, Wood is the person everyone seems to cite these days, so there is some authority there.

Speaking about absence of evidence. I'm just about though reading Healing Lyme Disease Naturally (more on that later - I have mixed feelings about the book.) and I've found no mention of Teasels' potential harm. Considering the bulk of the book is devoted to that plant, one would think that there would be a 'cation: coffee may be hot' warning about the plant if the author recommends taking it. There must be liability issues here.

What I want to know is if Teasel can harm people with certain conditions (like say liver problems for a random example)? Also, is it something that should be taken only for a short period of time? There are lots of herbal (and allopathic) remedies that cause a lot of good if taken for, say, a month, but can cause great harm if taken for a longer period of time. Is Teasel something like that?

Nothing in this world is completely harmless. What I want to know is exactly how mostly harmless Teasel really is.

updates

2010-05-05T08:46:00.000-07:00

I've spent over a week in and out of hospital. I'm home now, hopefully for good. But I'm very tired and am not allowed to take pain medication. This makes me grouchy.

If you are trying to get in touch with me, it will be a while before I get around to reading emails and such. So just hang in there and try again in a week.

The hospital it's self is absolutely lovely. It's a small 'country' hospital with only one floor and the most marvellous staff you could imagine. The nurses are really attentive. I was in acute care for most of the time (the rest of the time I was in the ER) which is probably why there were so many nurses around.

One of the reasons why I was in and out of hospital is because my White Blood Count was so low and they didn't know what was going on. I went to the ER, they did blood work, it looked fine, gave me 4 litres of IV stuff and sent me home telling me to come back if things get worse. The next day, I'm worse, I go back, repeat.

On the third day in the ER, the good doctor was in again and he got me into a CT scan right away. Within 20 min of those results the specialist was called in. A couple of hours after that there was another procedure with biopsies and heavy drugs.

It's all pretty serious stuff but it was nice to have things move so fast.

It was a combination of causes that sent me to hospital. The immediate cause was damage done to my colon by anti - inflammatory drugs (who knew? They admit I'm not an excessive user.) and a food born infection that a healthy individual would easily have fought off.

The thing is, they found a lot more damage than that would explain. Things like why would my white blood cells go down when I'm fighting an infection? My endocrine system is off kilter too. Lots of other lab results that are opposite to what they should have been under those conditions. It's like my body responds opposite to the stimulus.

There is something very serious going on here. Something that even the Lyme cannot explain. I have some more tests coming up but I'm very afraid that they will get frustrated and stop looking before they discover what's doing all this damage to me.

In an effort to end on an up note: I learnt how to Tat. One of my room mates was a absolute marvel at tatting and she not only taught me how to do it, she gave me a shuttle and some cotton. It's very easy on my arthritis.

Also, I have the best friends. Thank you everyone for cheering me up when I was so scared.

Teasel (it's English for Kardenworzel, I think)

2010-04-22T15:26:00.000-07:00

Anyone have any experience with Teasel? Anyone tried this for treating Lyme? Please let me know.

Lyme Support in Victoria?

2010-04-20T11:50:00.001-07:00

I've had this idea for a while but it's been really hard to articulate. Thanks to a new treatment I tried this weekend (I'll tell you more about it another day), my brain is clearer than it has been in years. Not perfect, but who knows if it ever will fully recover. But the point is that I'll give a shot at describing the idea and try to explain what has lead up to it.

One of the things about having Lyme, especially in Canada, is that you really are alone. Yes, family and friends do their best, but it is an invisible illness and all but the most attentive individuals tend to assume they know how you are doing that day. People, in well meaning attempts to be helpful, treat you as if you are as healthy as everyone else because you don't look ill. Others try to help by treating you as if you are a complete invalid and don't let you do the tasks you can manage. Both of these are hard to deal with. Very few people stop and ask how you are, they just assume, and this makes one feel desperately alone.

The medical establishment isn't any help. Even if they did acknowledge Chronic Lyme and provide treatment for it, what treatment could they give? There aren't proper clinical trials for the illness as there isn't a solid diagnostic criteria for it. So most of the information they have to go on is based on anecdotal evidence. So, any treatment a licensed healthcare provider was to recommend has to come with the disclaimer that it's not ethical (in Canada) for them to prescribe it. So there isn't much support there.

What about other Lyme patients? I just had a long intake of breath through my teeth making a concerned hissing noise after writing that sentence. Even though this is the best source of support, I have two worries.

First, Lyme affects everyone differently. Then there are the co-infections and the co-morbidities that go with it. So even though we go through similar situations, there are always differences with each course of the infection that we don't always understand in other people.

Second, and this is the part I'm not certain how to phrase correctly... second, ... Let me put it another way. My mother, who I love, has a history of joining support groups. Now, my mother, who I love, fully intended to use the groups to get well; however, in actuality, often used them as an excuse to stay ill.

You see, I worry. Support groups that centre around an illness, seem to me, to produce an undesired effect. It often reinforces the awareness that we are ill and the hopelessness and the trials and the fact that the rest of the medical community is against us and that our family doesn't understand us and everything else that is negative about our lives. It also gives us an excuse to stay ill. Because other people are just like us, it's perfectly aright to stay this way.

Does that make sense? I told you it is difficult to articulate.

Yet, I think that getting together with others in the same situation could be healing. But, how do we get away from reinforcing this victim-culture?

How do we take a potentially negative situation and turn it on it's ear? How do we centre it around a positive force? I have a thought. I don't know if it's a good thought. Actually, it's probably a stupid thought. But, it's a thought.

What if we weren't a group of people who got together because we have Lyme? What if we were a group of people who got together to do something like knitting and we just happened to have Lyme? Um, that needs clarification.

Throughout my life, good times and bad, there has been one constant comfort. It is that I can knit. I can take a ball of chaotic yarn and turn it into socks, or a sweater or, mitts, or anything. This is a skill I have and I can accomplish something even when bedridden. It is comforting to wear a sweater I knit or to strut around the house in a newly finished hat. Knitting really has changed my life for the better.

Since I've become ill, my yarn-friends have become essential to my well being. They have helped me financially and by giving what they can. But most importantly, they help me by making me feel like a normal human being, even if it's just for a few hours every Thursday. We get together, we knit or spin, we talk about life, we laugh, we tell stories, share recipes, and we have fun. It's my window on a normal life.

It's funny because many of us have a history of illness or a close love one who is chronically ill. It wasn't intentional, it just sort of happened.

So, what about if we created a group of yarn-friends who just happened to have Lyme or know someone close to them with Lyme?

Would anyone like to be a part of a knitting group for Lyme? I'm willing to teach any who want to learn. And, I know the perfect spot with the most supportive people you'll ever meet. So what do you say? Can we turn Lyme on it's ear and create something special together?

May is the month for Lyme

2010-04-20T11:14:00.000-07:00

A few posts about Lyme awareness I've come across today:

SpiroChicks Paint May Green

Lymenaide: Paint May Green

This is good to see!

And another article: What we don't know about Lyme

Chemical overload

2010-04-17T08:20:00.000-07:00

I've been knocked on my ass for the last couple of days. That will teach me to be so cocky about feeling well. Well, it would teach me if I had a mind that could remember. So basically, I won't have learnt a thing from it.

Taking advantage of feeling slightly better, I tried to catch up on some things that needed doing. I did mild shopping, consulted with vitamin shops and herbalists, and other running around. Of course, I ignored the things I said about being careful with my health. Feeling well leads me to miss meals, which weakens my system. Then exposing myself to chemicals like scented vitamin shops and perfumed friends lead to the crash. Trying to do too much with too little energy didn't help either.

So, what should I learn from this? Stop pushing myself. Be careful of diet and environment. And stop trying to get so much done.

You see, there have been so few days when I could accomplish even simple tasks. When I feel just a little bit better, I want to catch up on everything I've missed over the last few years.

Lucky for me, the chemical overload is fading. Unlucky for my family, they have had to put up with my befuddlement for the last couple of days.

It's funny, yesterday I must have been making lunch on automatic. Something or someone distracted me and suddenly I had no idea why I was standing next to a pot of boiling rice pasta with a lump of goat motza in my hand.

Lyme decisions

2010-04-13T12:35:00.000-07:00

I've decided to stop my antibiotics. I do so much better off them then on. I feel that the benefits of the drugs no longer outweigh the side effects. My specialist is going to be livid.

My specialist, a passionate and knowledgeable individual who I respect, is of the opinion that antibiotics are the keystone necessary to destroy the infection. This is augmented by herbs and supplements that reduce symptoms and ready the body's defence system. I think that this has a lot of merit. I don't have the training or the drive that my specialist has, but I do know how my body is responding.

I'll come clean with my specialist at my appointment next month. I want to make certain I understand my reasons for this step. The argument my specialist gives against is that going off the drugs too soon will lead to antibiotic resistance. But it's been a year and a half on heavy drugs... isn't it time to find out if the infection still has it's hold on me?

Hopefully my specialist will understand and give me the information I need to make the next step.

At the moment there is no way to tell for certain whether the infection still has a strangle hold on me. There is no accurate testing so we have to judge this on the basis of how I respond to treatment. Antibiotics did help. I'm confident I wouldn't be alive without them. But maybe the infection is gone and all that remains are symptoms of my body getting back to normal.

Quite probably, many of my symptoms are permanent damage from the Lyme, or separate ailments that have been made stronger by my weakened sate. In that case, any further antibiotics would be futile and possibly harmful.

Maybe the infection has gone into hiding. Maybe my body is now strong enough on it's own to keep the bacteria at an acceptable level. If this is so, then I can recover and maintain my health by controlling my diet, stress and environment and by exercising. If I live a healthy life then I should be able to manage - if this is the case. Of course, this would also leave me susceptible to future illness not to mention a major relapse if the bacteria are allowed to thrive again.

Maybe, I've done all I can to target the cause of the illness (Lyme) and what I need to do now is to focus on the symptoms. If I can make myself a functioning member of the community again, then maybe I will have the resources and motivation to improve more aspects of my health.

The thing is, I just don't know. That's the hardest part. Not knowing.

There is insufficient evidence to support any action I take next. Even my GP is loath to suggest one.

My GP does support me stopping the antibiotics. Dr. GP shares the opinion that they are no longer befitting me. My GP is supportive of trying different options, but cannot advise me what to do. As a medical doctor there is not enough evidence to suggest one course of action over another. So, my GP says that when choosing what to do next, start with things that do no known harm. I just have to be sure to keep my GP in the loop. (yes, I know the structure of this paragraph is awkward - I wanted to avoid using any gender pronouns)

I'm going to take even more control of my healing. In the past I've felt bullied and pressured into trying different healing strategies. Usually without understanding them fully. My current GP is about the only medical professional who has taken the time to outline the risks and benefits of each procedure. Consequently, I have a tremendous amount of respect for my GP. Others haven't been so diligent.

I'm going to be even stronger when dealing with people who are going to help my health. I've been told that I can be a real bitch when dealing with medical personal that I don't respect.

There has even been yelling. Still, I feel I need to be stronger with these people. I'm tired of being confused.

Acupuncture and Lyme

2010-04-08T10:24:00.000-07:00

Today I'm looking for information on Acupuncture and how it can be used to treat Lyme and other tick born illnesses.

I don't think that I will ever try acupuncture - I have a pathological fear of being punctured. But, I am at the point where I want to change the direction of my treatment. Two days off antibiotics and I feel fantastic. Last time I went off the drugs, I thought I would crash, but I didn't. I'm not well enough to work yet, but when I'm not taking the drugs, I can do all sorts of things I couldn't when taking them. It's time to investigate new directions for my healing and acupuncture is on the list of things to learn about.

What do I know about acupuncture? It's pointy. I know that is has been in use for hundreds thousands?) of years. Lots of people think it is wonderful and they use it in China to do things we would think impossible here in the West.

I have even been informed that acupuncture can cure my phobia of needles. hmmm.... all things are possible, I suppose.

I don't know if there are any risks involved. Well, I did see that episode of Family Guy, but that's cartoon medicine and probably not an accurate representation of the real world.

I like the Chinese way of restoring balance to the body. At different times in my life I have done the Traditional Chinese medicine thing where you boil up these foul smelling herbs for hours then drink the tea. It's actually not that bad after the first few times and it did revitalize me for several months. I especially liked the one herbalist, an old fellow in China Town who I called John Wayne. The thing is, now that I live with my G'pa, there is no way he would allow me to cook up a batch of Chinese herbs.

I also wonder; we have only recently become aware of Lyme, can traditional medicine help with such a new illness or would it just be treating the symptoms?

Things I would like to know about the Marshall Protocol

2010-04-07T16:20:00.001-07:00

Some things I would like to know about the Marshall Protocol:

How much of the healing was due to the protocol and how much was from changing one's diet, environment and participation in ones healing?
How much flexibility does the protocol have for different illnesses and for individual patients? Or, does one have to stick to a strict guidelines no matter what the situation?
How can I do work around the farm if I am suppose to avoid sunlight? The generic answer to this is that one should rest, but playing with the chickens is rest and they don't like being woken up at night.
Although, I admit that good ideas can come from any source and that Mr Marshall might be on to something; I am leery of participating in the Marshall Protocol group and receive medical recommendations from well meaning individuals who are not medically trained. If the group is orientated around offering support, then it is something I would like to try. But I'm frightened of a ridged protocol enforced by peer pressure from individuals who do not have all the information relevant to individual cases.
Where can I find peer reviewed articles for and against this protocol?
Are there any data sets available? Are there any individual studies? Are there any clinical trials?

Marshall Protocol again and other stuff

2010-04-07T12:02:00.000-07:00

These are things I've been thinking about lately:

I think that without the expertise of my GP and my Lyme specialist, I would have died a couple of years ago.
The protocol that my specialist has me on has done a lot of good. I still have major Chemical Sensitivities, but I have less fatigue, less brain fog, and better digestion.
Although, I suspect that it isn't doing as much good now as it was before. Perhaps I have reached the limit of what it can do for me?
I had some rather severe vertigo and had to stop my antibiotics over the Christmas holiday. Within 24 hours of not taking the antibiotics I felt better. I was less depressed, more motivated, energized by being able to do every-day tasks like doing the dishes. I also had more pain problems. Now that I'm back on antibiotics, I feel down right rotten again. It took only two days before I felt this way.
I am tired of taking the antibiotics, especially at the higher doses (note - not officially a 'high dose' - just high for me who is use to being on child doses due to my weight)
Speaking of weight, I've managed to keep a steady weight for over six months now. When I am not taking antibiotics, many of my wrong-foods are acceptable in small quantities.
I feel that I want to change direction on my treatment. I'm told that if I'm feeling bad, the treatment is working, but I sometimes wonder if feeling bad ALL the time is what I should expect.
I want a treatment that focuses more strongly on diet and environment. I have shown that I can actually change these things and stick with it for several years. Even if I miss chocolate.
I've been trying to research more on the Marshall Protocol. But I'm frustrated. Most of what I can find about it is antidoteal evidence.
Most of the scientific evidence presented for and against this treatment relies on the fallacy of "confusing correlation with cause". That's the problem with our scientific method - we cannot prove causal relations, only relationships of constant conjunction (I can't believe I just Hume'd you - sorry). We infer causality. But as I've said elsewhere - just because dandelions and grass usually grow together, it does not follow that grass is CAUSED by dandelions. But then again, it might be.
Even still, I would love to see some clinical trials with this Marshall Protocol.
The more I read about it, the more confused I feel. I have enjoyed this post, especially the comments on it as they highlight how passionate people are in regards to the Marshall Protocol - both for and against.
I do poorly with sunlight and vit. D supplements but I do well on many foods that have high vit. D. I also have worse pain on foods that are suppose to be non-inflammatory.
I'm told that most of my infection now is inter-cellular. (I think that's the words)
I have also been recently diagnosed with a syndrome (genetic not Lyme related) that puts me at high risk of cancer. Low vit. D is related to cancer (in the constant conjunction kind of way) so I need to take this into account when thinking about the Marshall Protocol.

Really, I'm just trying to figure out what I'm thinking. All I can see when re-reading what I've written is that a) I need more information and b) I need either a nap or another cup of coffee (the only luxury I didn't give up when I changed my diet).

I forgot to mention, I have generally low blood pressure with bouts of very low blood pressure so if I chose to try the Marshall Protocol which lowers blood pressure, my GP says that I will need to take drugs to increase my blood pressure. Just something else to think about.

Hope

2010-02-05T09:14:00.000-08:00

Here's Hope. (I copied and pasted the following article from that link.)

Also, thanks to Linda's Lyme Disease Journal for posting about this.

Student's research paper
on Lyme disease ranks nationally
Thomas Jefferson High senior a finalist
in annual Intel Science Talent Search
by Holly Hobbs | Staff Writer

A high school senior's research paper on Lyme disease is getting national recognition for proposing a method of early detection that cuts diagnosis time from a month to mere minutes.
"We're going to develop a new diagnostic test so that we can detect it earlier and more accurately," said Temple Douglas, 18, of Thomas Jefferson High School for Science and Technology in Alexandria.
Douglas was recently named one of 40 finalists nationwide in the Intel Science Talent Search, an annual contest sponsored by Intel Corporation that scouts for research conducted by high school seniors in the fields of science, health and technology.
She received a $5,000 scholarship for the ranking, a laptop and a chance to compete in March for a $100,000 scholarship in Washington, D.C.
Douglas said her research was inspired by three family members' struggles with Lyme disease.
"My sister and brother had joint pain, but my mom had more severe symptoms," she said. Almost half of the cases of Lyme disease in Virginia are reported in Loudoun County, where Douglas lives. A resident of Lucketts, she buses 90 minutes to her Fairfax County school each day.
Students at Thomas Jefferson are required to do a senior research paper. Douglas chose Lyme disease as the subject of hers.
"At the end of the summer, I was thinking of the testing and its inaccuracies and what could be improved," she said. Currently, blood tests are used to detect Lyme disease.
"Now, you have to wait for antibodies to show up [in your blood]. That can take up to three weeks," Douglas said. Her research paper, "The Application of Hydrogel Nanoparticles for Early Lyme Disease Diagnosis," proposes using a urine test instead.
"Nanoparticles are added to the urine to allow you to see the bacteria," she said.
Staff and teachers at Thomas Jefferson said they are not surprised by Douglas's successful ranking.
"As a student, Temple was very inquisitive and enthusiastic," said teacher Robert Latham, the school's science and engineering fair coordinator. "The choice of what to do after high school or college rests with Temple, but from the experience gained in her scientific project work and from the maturity developed in writing a scholarly scientific research paper, she has demonstrated high-level skills that would make her very successful as a research scientist or in a related field.
"I would like to see her win a Nobel Prize."
Douglas has already been accepted to several colleges, including Massachusetts Institute of Technology.
Principal Evan Glazer had similar praise for Douglas, saying, "Her work is inspiring because she pursued groundbreaking work in a topic that could help her family."
Twelve of Douglas's fellow students were named semi-finalists in the contest earlier this month, each receiving a $1,000 prize for themselves and $1,000 for their school.
Last year, two Jefferson High School students ranked as finalists in the Intel competition, Alexander Kim and Narendra Tallapragada.
Of the D.C. conference in March, Douglas said she is excited and nervous to compete, adding that she would find it "neat" to meet President Obama.
"The kids last year got to meet Obama," she said.
Douglas said she hopes to one day assist in the efforts to find a cure for cancer.

Vertigo

2010-02-05T08:10:00.000-08:00

In an effort not to be boring, I now have vertigo.

I've been dizzy off and on for a few years now, but this is much worse. Combine it with my chemical sensitivities which swell up the vagus nerve shutting down flow of blood to limbs and brain, and you get the most dramatic falling spells.

I go to the GP's office for a simple note. A visit that should have taken 3 minuets to say hello, 4 minuets to complain about my joints and 2 minuets to get a note and say good by. I know that's a minuet longer than the average 8 minuets an average physician spends with a patient in this country, but that's actually a short visit for me.

As per usual there were many scented individuals in the waiting room which triggered my MCSS (Multiple Chemical Sensitivity Syndrome) which combined with my dizziness so that when I stood up to check in with the receptionist, I couldn't.

The nurses made me lye down for an hour in this special room before pronouncing me well enough to walk (assisted) to the doctor's office. The doctor did the follow my finger with your eyes test and right away saw whatever was wrong. I don't know what they look for with that test but my specialist saw something starting to go wrong just over two months ago.

Vertigo is a known reaction to several of the medicines I'm on so I get to take a week off all antibiotics until I scan chat with my specialist about this. There is also the possibility that it's due to a viral infection. My theory, which none of the doctors share, is that my jaw (TMJ?) is really, really bad and making my ears hurt. Or, it could be a new symptom of the Lyme or a co-infection.

If it's the first, then the vertigo should be gone in less than two weeks. If the second, gone in just over three weeks. If the third or fourth option, then, well, who knows.

Anyway, I've taken to walking around with a cane when I go out of the house. It's funny, I don't mind using a cane when my knee requires it, but having a cane just because I'm dizzy and scared of falling over and cracking my skull open makes me a little embarrassed. I don't know why this is.

The rapid downslide of my health over the last two months had my GP reviewing my diagnosis. My doctor when over my test results from before I started treatment to see what new light recent research sheds on the diagnosis. It seems that my GP is even more confident that Lyme (and co-infections) is an accurate diagnosis. Pity that, as we had both silently hoped we were wrong.

It may be that my GP and I are just frustrated in the recent decline of my health, but we both feel that I'm approaching a crossroads in my treatment. In a few months, I will have to decide whether to increase the treatment and possibly go to IV antibiotics (where in Canada one can get IV antibiotics for Lyme I'll never know) or go on a more mild antibiotic regiment that is even heavier on the natural medicine.

The downturn in my health could ether be that I'm not treating the infection aggressive enough or I'm treating it too aggressively. Some of the doses are quite high for my body size. Also, I've had the biggest improvement in health by changing my diet and environment. It also shows that I have the discipline to follow the more strict regime of natural healing rather than the 'take this pill and do everything else the same' point of view of most patients. On top of all that, the effect that chemical exposure has had on me the last few months has been drastic which says to me just how much improvement changing my environment has had on my health.

Maybe it's the logistics of managing my health that has sent my head spinning.

Anti-inflammatory diet reminder

2010-01-31T08:54:00.001-08:00

On a morning where I can hardly bend my fingers because they are so swollen, this small article reminding us of the influence of diet on inflammation makes me realize that maybe I shouldn't have had those tomatoes (a common trigger for arthritis symptoms) earlier this week.

Scent Sucks

2010-01-27T14:33:00.000-08:00

I just wanted to observe that all the wonderful "sent free zone" signs that government offices plaster on their walls, windows and doors are absolutely useless!

Today I had the privilege of going to two different offices in town to do paperwork that requires I go in person and prove my identity. Each place had notices that no scented products were to be worn in them. And, in each place, I ended up waiting for almost an hour outside the building, in the brisk January air, because of the overwhelming perfume smells. Both meetings had to be cut short because of my reaction to the smell in the buildings. The final meeting ended with me stumbling out to the car and sitting there with my head between my knees in an attempt to restore the flow of blood to my brain.

I faint from petro-chemicals but it's usually a slow process and I get confused and loose my vision first. Good thing I wasn't driving. I have no idea how I got home and my stomach is still turned off from the experience and probably will be for a day or two.

It's a fight or flight reaction to what the body perceives as danger. Like when you fall into ice water and the body shuts down the non-essential processes like digesting and blood flow to hands and brains and stuff. Some people have this with the sight of blood and they faint. I have this with the exposure to fumes and perfumes. It sucks. I thought I was getting better at handling it but it turns out I was just getting less exposure and forgot how badly it effects me.

Maybe I'm just feeling grumpy from my ordeal but it is my humble opinion that it should not be the poor persons with allergies that are excluded from the waiting room. Rather all those scented people sitting beneath the "due to allergies, the wearing of scented products is prohibited" sign should stand outside in the cold, north wind while the rest of us well behaved and unscented individuals get to sit inside in the warmth.

Tip for repelling ticks

2010-01-23T16:04:00.000-08:00

I came across this little article about a traditional method for keeping ticks away.

Slipping?

2010-01-21T10:37:00.000-08:00

I've been cramming cranberry juice down my gob the last few days. It's not the most pleasant sensation - drinking real cranberry juice - especially given how expensive it is. Can you imagine, $12 for a medium jug of juice? That's not the sugar rich cranberry 'juice' of my youth. Of course the juice is unpalatable on it's own and needs to be mixed 50/50 with apple juice to get it down. Then again, it is starting to do the trick and is more than worth it if it means avoiding the doctors office.

There was a moment last summer when I had realized that my illness had taken too much of my day. Keeping a journal of my symptoms was good, but it also reinforced the attention I was giving to the bacteria. I didn't want to give the spirochaete the satisfaction of having all of my attention so I made the effort not to think about them. The thought was that if I stopped paying attention to the illness I would speed up my recovery. I don't know if it was working or not on the physical side of things, but emotionally, I liked not thinking about it. That's probably why I slowed down on my blogging the last few months.

Up until the end of November / beginning of December, I think there was a noticeable improvement month to month. Energy and balance were my primary symptoms. I figure the balance problem is due to the arthritis in my jaw making my ears grumpy, but no-one has looked into it yet. Chemical sensitivity was noticeably less during the fall, and I was slowly reintroducing foods back into my diet that previously made me seriously ill. Brain fog was still around but predictably linked to my blood sugar and time of day - so if I was well fed in the morning, then I could interact like a normal human being (or a very close approximation of one). I had even entertained thoughts of not needing to visit the specialist in 6 months or so. That was a bit premature on my part.

Since around the second week of December things haven't been going so smoothly. I wonder if it's the stress of the season or the lack of sunlight. I suspect it has something to do with my new treatment plan. Maybe the nasty Lyme bugs are fighting back. They say that if you are feeling rotten that means the bugs are dyeing off. One can only hope.

Current symptoms include: major brain fog. Poor response to stress. Fatigue. Insomnia alternating with sleep walking. Joint and other pains. Loss of dexterity. Poor concentration. Digestion is actually improving and I haven't loss too much weight over the holidays so that is good. But still, Dad thinks I'm slipping back quite quickly. I think it has something to do with the treatment. The current herbs/medicine is designed to target the infection in the brain and nerves - thus explaining the concentration, stress, and pain issues. I also suspect the new toxic binders (from mini shrimp like creatures that start with the letter 'c') is insufficient to deal with the bacterial die off, thus the waste management issues necessitating the copious consumption of cranberry juice.

Christmas in the ER

2010-01-13T14:13:00.000-08:00

I experienced the most amazing thing on Christmas day. I don't know if it qualifies as a miracle, but it is a definite improvement in the world.

A little over a year ago I was in the ER due to extreme pain. If you don't remember, have a read. It was quite the ordeal. Not the pain - sure that was a problem too, but it hurt too much for me to worry about whether I would survive the day or not. The ordeal was with the staff's attitude towards my illness. I had to spend a great deal of time explaining why I was on the drugs I was and exactly what steps and by whom were taken to arrive at my diagnosis. I didn't just have to do this once, I had to do this no less than four times in under two hours - each time requiring more detail than the last and all the time I was getting worse.

It was an excellent example of the attitude towards Lyme in this country. Which is: yes, sure, it exists, but no one in this country could possibly have it or if they did have it, they were immediately cured by the process of entering the province. It's extremely political.

This year, I spent Christmas day in the ER for exactly the same complaint. No one has bothered to fix the problem because they are waiting to see if it is 'just' a symptom of Lyme (and/or co-infections) or if it is (as I think) something different and most likely genetic.

Remembering what it was like last year, I was ready with all the details of how and why I'm being treated for Lyme. Only, no one asked me.

Let me say this again. Not one single staff member in the hospital questioned my diagnosis!

I did not have to explain the exact chronology of my symptoms, tests, and treatment.

I did not have to go on for great length about my diatary restrictions.

I did not have to explain my chemical sensitivities - they even put me in a seporate room away from the nasty smells.

In fact, the only really important effect that my Lyme treatment had on my stay in the ER was the discovery that telling them what herbal supplements you are on is a good thing. Apparently it would have meant a fatal reaction to the painkiller they were thinking of giving me so they sent me home with an arm full of morphine instead.

I don't know why they were so accepting of my Lyme diagnosis. Was there something in my file from the last time I was in the ER? It wasn't the same doctor, it wasn't even the same hospital. It was extremely busy so perhaps they didn't have the time to question other doctors' work.

I would like to believe that it's more than that. I would like to think that attitudes towards Lyme are changing. Perhaps medical professionals in this province are starting to think for themselves rather than take at face value what the bureaucrats tell them. Maybe the ER doctor had watched something on the news about Lyme and then did some reading of his own. Maybe this is a sign of good things to come?

Marshall Protocol, Lyme and my presonal progress

2010-01-06T15:47:00.000-08:00

Recently, it's been suggested that I look into the Marshall Protocol (MP) for the treatment of Lyme. I know just about nothing when it comes to the MP, and for some reason find researching it to be even more confusing. I'm certain that's just because my brain has given up on me and decided to take the decade off. Whether that's the last decade or the one just started, remains to be seen. The down shot of it is that even this simple introductory video as to how the protocol is suppose to work, remains too complicated for me today. I'll have a go at watching it tomorrow morning when the coffee is still fresh enough in my system for the brain to function.

Why bother looking at other treatment methods? I am pleased with my current treatment plan: a mix of allopathic and holistic medicine. I've shown improvement overall. My bad days now are better than my best days were a year ago. Although I'm not entirely certain if the meaning comes across right in that last sentence. The progress is slow and I don't see the improvement when I look day to day or even week to week. But if I compair where I am to where I was this time last year or the year before, I'm definitely on my way up.

I adore my specialist and I think that if it was not for said doctor, I wouldn't be ... well, I don't know if I'd be dead, but when talking to my GP today, it was suggested that I probably would just be an unfortunate lump of stuff in a hospital with tubes going all in and out of me.

My GP and I were mulling back and forth about all the things that I've tried and what has worked and what hasn't. It's the most wonderful thing to have a doctor of any kind who asks you your opinion.

What do I think worked best so far?

I think that the single biggest thing was a physician (my GP) who showed me that I wasn't making it all up. It's not just that I was listened too, it was that this doctor did the tests and showed me, yep, that blood work explains why you have this symptom. Not just with the Lyme, but with health things that I was afraid to bother my old doctor about. Even things that I thought were normal - you mean not everyone's jaw goes click, snap, and clunk; produces pain and get's stuck open when yawning? It's the confidence to know that my body was indeed telling me something that I value most about this experience.

I think that second is my change of diet. I've gone to extreme measures to change my eating. I eliminated just about all my favourite foods including chocolate. I didn't just give up foods willy nilly, I used one of those blood test immune response things and eliminated every food that had an IGE and IGG response. I did that for a few months then added them back one at a time to see if I could tolerate any of them. I am convinced that this step alone slowed my decline enough for other treatment to take hold.

Change in my environment, including getting rid of chemicals has been another huge help. Though this is a lot harder to keep up than my change in diet. Even I forget that I get horribly sick when exposed to too much of certain substances.

Up there with things that have done the most good is my specialist. I think this has been a big help and that my specialist has acted professionally and shown good results. I wish the improvement was faster, but I was told it would take time.

So if I am happy with my specialist why seek out other protocols? There is always the grass is greener theory - I want to make certain I'm doing all I can to get better.

Also, this new protocol is available in Canada so I wouldn't have to leave the country. It would also mean a day trip rather than an overnight stay. Apparently it would be more affordable as well.

There is also a few things I would like to have different in my currant treatment. This is just because of my own personal view on life. The thing is, I have behaviour traits that I don't much like. Some of these traits I've trained myself to overcome but there are other's that I just can't find a way around. For example, I avoid painful actions. I gave up toffee long ago because it caused jaw pain. I like toffee well enough but, without telling myself, I just gave it up one day. I actually remember the specific day - someone offered me some of that really nice English toffee and I said no thank you even though I was hungry and something sweet seemed just what the doctor ordered. It was an unconscious choice. With my brain taking the decade off, I seem to make a lot of choices unconsciously these days. For example, it hurts to swallow so I forget to take my pills. If I have a lot of pills to take each day, then I forget them more and more. But, if I have only a few pills, then I take them faithfully. There is a direct correlation between pill quantity and frequency of forgetting or something like that.

That paragraph kind of got away from me there. The point was that when it comes to behaviour that I don't like there are two approaches: modify the behaviour and if/when that fails, modify the environment. I would like a treatment course that takes into account that I do get substantially more nutrition from my diet than the averaged patient. I would also like that treatment plan to take into account this pill/forgetting correlation thing-y.

When it comes to this Marshall Protocol, there are things in my history that suggest I might be the right candidate for it. Not that I am saying that I understand it and I also want to make it clear that it was not recommended that I try it. It was recommended that I research it and here is why: I have always had sun sensitivity. I don't sunburn and I don't suntan. I do feel faint if in the direct sun for too long. Vitamin D makes my right side hurt and upsets my digestion. I also seem to respond poorly to foods that are suppose to reduce inflammation.

There were other things as well, but this much blogging in one go, after such a long period away from writing has taken its toll. I don't even know if I've managed to say anything worth while, but what else is new?

insomnia and Lyme

2009-11-14T23:03:00.000-08:00

It's been well neigh four and a half years of poor sleeping.

I've never looked up insomnia so I don't know if I qualify or not. For a good part of my life I slept almost exactly 8 hours a night, every night. Then an emotional time happened and I started to stop sleeping. A bad night is less than two hours asleep. An average night would be around four hours and the occasional (once every 10 to 14 days) good night would be more than six hours of shut eye. The funny thing is I always felt more rested after a night of no sleep.

Even though the original emotional events that I referred to are less acute, I just don't sleep.

Most of the time I cannot sleep because my body just won't flip that little switch. I guess that's going to need a little bit more explanation. I'm tucked in under the covers, comfortable and warm. My mind is resting - either blank or entertaining itself with memories of things it has seen like TV shows or times when I've been to the theatre. Sometimes I take out the little homunculi that I store in my mind (It's a memory aid thing - it's like making a little imaginary doll that is shaped like the person who's theories you are learning in let's say, philosophy 101, and teach that imaginary person everything you need to know for the exam on that one historical figure like Aristotle and you teach him about Aristotelian ontology and such. Then I take the imaginary little man and put him in an imaginary little box and take him into the imaginary little house and find a shelf in the appropriate room to store him in until I need him for something like a-not-so-imaginary exam.) and have two or more of them have a conversation for me. Like, just the other night, I got out my Plato and BF Skinner homunculi (I have a suspicion I'm not spelling that right) and they had a very entertaining argument on personal identity and the origins of behaviour. But I was talking about sleep not trying to put you to sleep.

Most nights when I don't sleep it's not for want of being relaxed. I am calm in body and mind, but I just simply cannot loose conciousness no matter how many sleep meditations I do. It's like there is a physical switch hidden inside me and it's stuck on. 'Sleep' on these nights consists of keeping the body still and giving my mind something restful to do. It's not as good as real sleep, but it's better than pacing. I've finally found some melatonin that my stomach can handle and this helps on these (many) occasions. The only draw back with melatonin for me is that it seems to make me sleep enough to start sleep walking again - nothing serious yet, thankfully. By serious I mean that I haven't done any sleep-baking, sleep-knitting or sleep-writing in the last few years. Though, I wouldn't mind it too much if I were to sleep-do-the-dishes every now and then.

Another thing that keeps me up at night is pain. There's a lot of inflammation associated with Lyme and I just don't heal like I use to. Pain pills help if it's not too bad and my GP says that mediation or doing my biorhythms just before bedtime should help. On bad days, when the pills don't help, the pain is usually enough to knock me out (that's the wrong phrase - maybe something like: body just won't stop hurting so mind searches for a way to make the suffering stop and decides that sleep'is is a good place to put me so I sleep until the threat is over - something to do with the autonomic system problems I have perhaps.) on it's own and I can sleep it off. It's the in between nights that I still have trouble with.

Less often, on nights like this, I don't sleep because my mind just keeps me awake. It's usually worry, or memories like aniverseries of sad events, or excitement about the next day and the accompanying concern that I might over sleep my alarm. On these nights, a supplement called Theanine is the only thing that comes close to helping. Though, usually I just give up on the idea that I will get sleep that night and just try to find something productive to do or a comfortable position under the covers to stay awake in. If I struggle against myself on these nights then I definitely won't sleep. If I accept that the situation is beyond my concious control then I might drift off just in time to wake up and start the day.

My Lyme specialist tells me that pesty old insomnia is a common symptom of Lyme. It's a pity because a good sleep schedule is so vital to the healing process; especially when it comes to reducing the inflammation. I often wonder that if I could get my sleep back whether I would feel less fatigue during the day. I think so; but then again, there is more to fatigue than just good old lack of sleep.

2009-11-14T20:02:00.001-08:00

Hi all,

Still alive. Actually, I'm doing well compared to last time we chatted.

Thanks to everyone who sent their well wishes my way lately. Dad just installed the internet in my room. It's a really long cable that goes all the way from the router, through the walls, under the floor and up into my room. This may or may not lead to regular blogging. I'm not going to put that pressure on myself just yet. I have the most ridiculous amount of catching up to do with paperwork and such like that.

hmmm...

2009-07-14T15:12:00.000-07:00

Wow, I received my first truly unhelpful comment yesterday. Well... mostly unhelpful. It does an excelent job of illustrating a point I’ve been talking about for the last year or so.

It was actually quite sad to see the total lack of willingness to research beyond the word of a single authority. Like many major illnesses before it (HIV, Aids, ALS, Cancer, &c) Lyme is a difficult quagmire to understand at the best of times, especially when both sides of the argument selectively choose which scientific studies to believe. The authorities quoted believe research from forty plus years ago and deny recent studies or studies from Europe, or in the case of BC, create statistics with no reference to any scientific study. Other’s, like that comment mentioned, are more interested in acquiring money from those who feel the desire to improve their health. Yet, I have found that there are some in the middle who really do wish to help people, who provide sound evidence, and who have success in their treatment process.

I’m not interested in presenting the arguments in full at the moment, they are available elsewhere and I have outlined them in more detail in earlier posts.

My aim is more that I want to encourage people to participate in their own well being. I no longer trust physicians fully, even my current ones. They are human and are therefore capable of error. I make them provide the research they are basing their treatment on. Either they can provide the medical journal or they can cite it and I can read it for myself through the university library. Sometimes I accept and sometimes I request alternate treatment. I’m not suggesting that everyone go that far with their health, but a use of common sense is necessary. Trusting any authority without question is a fallacy worth avoiding in all aspects of one’s life.

My advice to yesterday’s commenter is to read (and think) before you type. What do the authorities you quote base their findings on? What evidence do they present? Is it up to date? Do their conclusions follow from the axioms and premises? Does it fit what we know of the rest of the world? Most importantly, when it comes to medical practices, is the result desirable or does it cause unnecessary suffering?

It would also be useful to see first if what you wish to say fits with the general feel of the blog. Blogs are very different from forums in that they are usually run by individuals about something on which they feel strongly; therefore one should be more cautious when expressing a difference of opinion.

Now, we get to my personal feelings on this topic. On the whole, I found it hurtful, ignorant, and not in keeping with the spirit of this blog. I’m reiterating my right to moderate comments that I find harmful (see the “read me” in the side bar). I had hoped not to have a need to instigate comment moderation, but I think that has changed. Am I limiting freedom of expression? No. Everyone, in this part of the world in any rate, is free to start their own blog and moderate any comments that they might acquire. I will, however, leave this one comment as an example of what I do not wish to see here.

Lyme Temper

2009-06-29T20:12:00.001-07:00

I lost my temper, oh, about a week ago now. It’s not that I lost my temper at myself, I do that daily. No, I lost my temper at someone else. Here’s why:

My Dad’s girlfriend, Brazil lives with us. She can go weeks without saying a word to me. It’s improved slightly the last few weeks, but that’s mostly because I initiate the little pleasantries that let the other person know that they are acknowledged as a fellow human being: hello, good morning, welcome home, please pass the salt, &c. To her benefit, she has begun to get the hint and occasionally done the same.

I’m use to being the bad guy when it comes to others; just ask my mother, I can also be quite deliberately cruel at times. Not so much cruel, but honest – I say what I see and far too often I see it correctly and that hurts people to hear it. I don’t like that I am this way inclined (and I have made the extra effort to be anything but to Brazil – up ‘till today), but I recognize my faults and live with them. What I cannot live with is a person who will not talk to me. For a person who is supposedly one of the world experts in Non Violent Communication (NVC), she never expresses her needs and wants. Pulling teeth would be easy compared to getting her to say ‘hello’. This is what I lost my temper at.

It was a little thing that set it off - it always is. When words were finally exchanged, she expressed something that cut to the core of the matter. She stated that she did not think I am ill. She believes that my life is not in danger and she believes that all this trouble is nothing more than moodiness coupled with an eating disorder. For those of you who have read my blog, you might understand why this hurts. It’s exactly the kind of thinking that caused me to become ill and I think that this is the crux of the trouble between us.

Certainly, this goes against what my doctors say. It goes against what the blood tests say, it goes against what the symptoms say, and it goes against what I say. I would expect someone looking in from the outside to call me a liar, the local medical establishment does this everyday though the simple act of denying the medical treatment I need to get better. I suppose that under certain circumstances, like the self preoccupation of moving to a new country and becoming established in a dream career, that perhaps the preconceived notions of what I am would take dominance over the facts. Sure, I can believe that. What I have trouble with is that it’s not just me she is calling a liar; it is also the man she says she loves.

My dad has given up every financial asset he had to fight this infection. His actions as well as words tell me that he is wholly committed to helping me get my life back. Does she believe that he is lying too? Maybe she thinks that he is the kind of man who would say one thing and do another – as you can see, he is not. Or maybe she just thinks he’s stupid and misguided. He has quite literally given up EVERYTHING and she doesn’t care about how important this is to him? How can she be so cruel to him? How can she expect him to just stop because she thinks that I’m not really ill?

She asked me, Would I rather she had not come? I’ve thought about this for a while now and you know what? Honestly? I would rather she had not come at this time. That’s not an absolute statement saying that I wish she didn’t come live with us. I wouldn’t say that. But you see, right now she is a greater stress in my life than anything else. Even greater than those little Lyme bacteria. But she is here now and I’m a problem solver looking for a way to make this work.

I asked dad the same question and he said, that he would have rather her come two years ago so that she could have seen me healthy and then seen me ill, really ill, we’re talking death bed ill. Then seen the year it took to get a diagnosis (and the many experts who ruled out eating disorders and depression) while we scrambled around in the dark trying to find and eliminate everything from my diet and environment that made the symptoms worse. He thinks that maybe then she would believe. He (idealistically I think) believes that maybe then she might care if she had seen how much we both have lost and how much struggle we have gone through to get to a point where I am well enough to get out of bed every day. He’s aware of her beliefs towards me and has known about them longer than I have. I can see how much pain it causes him.

I wish that if she had to live with us that she would have come two years hence when I would be well enough to be self sufficient. Then I would be well enough to deal with the stress of not being able to communicate with someone I live with. Six months now with one conversation and that involved far too much yelling for my fancy. As I’ve experienced in the past with my own mother, when you stop talking to someone you live with, you don’t know their wants and their needs. When you don’t know that, your own opinions and predigests take over and it’s darn near impossible to hear the other person, if you do begin to talk again, over your own ideas of how things stand. That’s where trouble starts.

I don’t know her wants, needs or intentions and it is giving me a stomach ache. I’m doing my best not to jump to conclusions, but without a dialogue... how can I not think she despises me? - Facial expressions and body language confirm this theory. That and her actions; but, can I trust her actions to tell me the truth when they contradict what she says (not to me, not lately)? I’m not smart enough to sort out which is true: actions or words. - And if that was true, if she does despise me, how could my father bring someone into my home (our sanctuary) who thinks we are both liars and that my existence is inconvenient? But maybe that’s not how she feels. I’ll never know if she won’t talk. I’ve asked her to tell me, I even suggested we bring in a family councillor to her and was met with a sneer. Perhaps she’s too proud as an expert in NVC not able to solve her own communication problems? But that’s my own ideas filling in the blanks again. That’s the problem with the human brain, we cannot leave things blank so we, when no other evidence presents itself, we fill in the blanks with our own thoughts. Gestalt psychology would do well to investigate communication deficits. I know I’m not the only one doing this but I have done the first step towards fixing things: I’ve asked her questions. I’ve simply received no answers. How can I not fill in the blanks for myself if she won’t communicate?

The point is that I just don’t know and if this cannot be solved within a year of living with us then I will exercise my veto on this little experiment.

The point of this story is two fold. Firstly and obviously, it’s me no longer trying to be nice. And certainly yes, I would say this to her face if she would stand still long enough. But it would seem that the best way to be an expert in communication is to not communicate: Not to listen nor to talk, simply believe what you always believed and life will be fine. I’ve held off stating this out of respect for my father who it kills me to see in the middle of this conflict. But 6+ months of being nice has not remedied the situation and it does as much harm to his health as it does mine.

Secondly, this is an analogy for what society says and does. The same contradictions hold: I’m told that health care is a right and should have access to the treatment I need (expert in communication) but am denied access to it (not talked to). It’s the same kind of thinking and the same contradictions of behaviour, words and values that caused this health crisis for myself and countless others in Canada. We don’t have the communication between the ‘experts’ and the patients because both sides think that they know best. That just perpetuates the situation until something snaps.

Snap.

Force of will is a force of habit

2009-06-21T16:37:00.001-07:00

Will I ever conquer this thing? Some days I think I might; other days, I’m not so certain.

I am continually surprised by the strength of my will. It took twenty years for this infection to fully diminish my health. I spent most of my life up to that point thinking that I was weaker than everyone else because my body couldn’t keep up. I felt that I had to work so much harder than everyone else to accomplish what they took to be the simplest of tasks. It’s like trying to keep up with someone when they are walking on the pavement and you are walking on deep, dry sand. You take three steps for their one.

Yet, I had what amounts to a normal life in this day and age: more or less. I think this is because I willed it to be so. I was determined to keep up and even though I slowly developed more and more symptoms each year that dragged me back, I managed to. Each time I got really ill, about twice a year, I pulled myself out of bed and got going again. I don’t know how I ever managed this, but I did it for most of my life.

I think that maybe there is something of this force of will still left in me that makes me so forceful when it comes to improving my health.

Yet in two hours, I went from being a healthy’ish and relatively happy person to this hollowed out shell of a human. I have improved drastically in the last 8 months, but I still feel like a useless bit of furniture; high maintenance furniture at that. I just get in the way and make everyone else miserable. Instead of being a productive member of the household, I’m a burden on the people I love. I not happy about it.

I’ve been waiting almost three years to take a course. It’s a week of instruction followed by a year of homework. This goes on for six years. This year it was offered here, in my own home town. Last year, I had signed up to travel to Gibbson’s for this, but didn’t manage it for various reasons. There is no way that I was going to let this opportunity pass me by.

I know I haven’t been doing well lately. It’s not that I’m going down hill, it’s that I haven’t been able to manage my own medication and I haven’t had the help I need to manage it. So weeks when I take it, I start to feel better. When I don’t take it, I’m almost how I was 8 months ago. You would think that my desire to get better would outweigh the part of my brain that knows I hate to take pills (trouble swallowing). Sadly, my brain doesn’t work that way and my memory just won’t stick. So there has been progress in some areas – my chemical sensitivities have been reduced thanks to lowering the exposure which allows my body to detoxify – but in other areas, especially digestion, I haven’t been so good.

But too bad, I was going to take this course if it kills me.

Well, I did. I managed all five days of instruction. We even worked with dish soap in the same room (albeit, a large, well ventilated room with the door open and me sitting right next to said door).

The first day when I came home, I lay on the floor for like an hour. Literally. Just a ways inside the front door, was me, on my back, on the floor, doing my Monty Python parrot impersonation.

There was some discussion as to whether I should continue but I said that I’m not quitting damn it!

By the end of day three, I was pretty well all in. My symptoms were quickly regressing to how I was months ago. That mysterious pain in my side came back and everything else just hurt. I did sneak out early on the fifth day, but instruction was finished by then so I lost nothing major by it. Brain fog crept over me at several occasions, but each time I grabbed hold of my mind and shook it until it paid attention. The few times I couldn’t bring my brain back to know where I was, I just kept writing notes. A trick I learned in University – if brain not work, then take dictation and sort out notes later.

I don’t know what I did to manage all five days but what ever it was; it did a heck of a lot of damage to my body. I feel it mostly in my hands and my gut. The digestion muscles keep clenching up on me but then again, how do I notice in amongst all the pain my gut grants me each day? I wish eating didn’t hurt, I miss gourmet banquets. Mmmm, 6 course meals at the local European restaurant. Now that was the life. It’s the hands that feel it the most. The skin feels tight and the joints of my fingers won’t straighten. I think they are just swollen but that wouldn’t explain why I lack the strength and dexterity to hold a fork properly. I think it’s a Herxheimer coming on.

Somehow, I willed myself to overcome my symptoms for those five days. It’s a lot like how things use to be: it hurt like hell and I did it anyway just to try to keep up with my peers.

How come I can’t muster up this will power every day? Well, I think because my physical health has a huge influence on my brain chemistry. For example, if I don’t eat well, then my blood sugar spirals and I get infuriated at my self. On days like that, I truly hate my existence. Low blood sugar leads to depression or rage which I direct at myself for being too weak to care for my own needs which lead to this very situation. On days like this, the world is very black and all I can see is how much I have lost in such a short time: My freedom, my independence, my health, many of my friends (those of my age group who have their own lives to lead and through no fault of their own, have no time for an invalid such as myself), my career, my future, my ability to drive, the freedom to enter a shop without the risk of collapsing, my memories, my intellect, my income, my body, the foods I enjoy most, and the list goes on. On days like that, I see no way out. It’s not every day; but as I wrote before, my short term memory problems multiply the unpleasantness of the experience infinitely.

On days when I am feeling better, most of my willpower goes into modifying my environment. If I can achieve an environment that doesn’t put pressure on my immune system, then I can get some of my life back sooner. On those days I want my life back more than anything and I not only have to fight against my own bad habits but, well, to put it bluntly, the bad habits of other’s around me as well. I seek out the environmental tigers of symptoms and do my best to minimize them. I have to be so forceful with myself (and even then I don’t listen as often as I should) to remember not to do behaviour X as it causes symptom Y that I’ve just gotten into the habit of being strict. Another bad habit? Perhaps. Not perhaps, highly likely.

If my will power was enough for me to get better, I wouldn’t have gotten this ill in the first place. I would still be holding my own. I’m beginning to suspect that it’s much stronger than I thought. But it’s not enough on its own. Even though I’ve been working extra hard this last week or so to go beyond my symptoms, I’ve still only had half my pills because I just can’t remember on my own. I don’t know what to do about that just yet.

Hot and not sweaty

2009-06-02T10:36:00.000-07:00

I've been banished to the house for the day. This is a double shame because there is something in the house that makes me sneeze and feel ill, but mostly because this is the first time in about two years when I have enough energy to do stuff outside. The thing is, I'm not sweating. Not only that, I don't know what temperature I am. Put this together with real summer weather (over 28 C the last week) and I over heat without noticing. Who would have thought that sweat could be anything other than annoying?

Whatever it is in the house that is causing my sneezing has zapped my energy. About the only thing I want to do is iron, but I'm told I'm not allowed to do that either. This is very frustrating.

I do have some internet work that needs doing: I want to start chronicling our adventures on the farm. I would rather be outside pottering at things, but until my internal temperature control decides to work again, I'm stuck inside.

Single days

2009-05-27T19:57:00.000-07:00

I don't quite know the right analogy for it.

It's something like a long walk composed entirely of single steps. We know of course that each step is simply part of the walk, but imagine seeing things from the point of view of that one step. Imagine you are a step, you whole universe consists of moving the left foot a few more inches forwards, towards... what? Something, surely. Else why move the left foot at all? So there is a sense that there is something bigger, but nothing more than that. From our point of view, each step is insignificant; what is important is that we get to the coffee shop before it closes. We almost never give each individual step a second, or for that matter, a first thought. It's almost impossible for me to imagine what the would would look like from the point of view of one step.

But maybe it's more like the first time I knit a sweater. Every five or six stitches I would stop, get out the measuring tape and see if I was there yet. Each individual knitted stitch seemed so improbably minute; I felt I would never finish the project. Sometimes, it felt like the fabric was getting smaller with each stitch. It was an impossible task better suited to Sisyphus than a novice knitter. Yet, some unknown faith held me to the task - even the many occasions when I tossed the whole endeavour in the trash out of pure frustration, something coaxed me to fish it out again and knit one stitch more.

What am I saying? I think it is that we are use to seeing the world in larger sections: a walk rather than a step, a sweater in the making rather than one knitted stitch. Or at least, I am use to seeing the world this way. It is a very teleological way of looking at one's life and as I get older, I am realizing that life isn't like that after all. Life is one day, repeated differently.

I keep a journal of my Lyme symptoms, medications, supplements, &c.. This way I can see how I was doing a week ago, what medications work and what dosen't. Even so, I didn't know how I am doing. Each day seems the same as the day before and the day after, only doing different things. When I'm having a bad day then all days are bad days, when I'm doing well one day, then all days I am doing well. It's one of the 'blessings' of a fading memory.

That dosen't really make sense, not when I look at it during the rare moments when my academic brain comes to visit me. But that's the thing about a broken brain, it leads to an irrational mind where the connection between past and future is lost and all that there is is today. The present becomes the archetype of all moments and I live a life of single days.

So my journey towards good health is a series of single days. This will, I am told, end in a few years, or at least, come to a point where I can live a life again. I want to believe it, but I just cannot see it. I envy people who have faith in God, I would love to live my life with the comfort that great faith brings; but right now, I would settle for the smaller faith that keeps you walking one more step, that keeps one knitting one more stitch, that little faith that keeps us believing that the sun will rise again.

small steps, big victories

2009-04-13T08:48:00.000-07:00

I can now eat goats cheese. Not much, maybe half a teaspoon and only on good days. But I can't explain how great a victory this is for me. It's such a small step, but it's a sign that things actually are improving.

They never told me there would be days like this

2009-04-04T14:54:00.000-07:00

On days like this I just don't want to fight it any more. No matter how much I do, it's not enough to get better. All my attempts to fight this infection seem to do is to make the lives of the people around me miserable. It just dosen't seem worth it. I'm so tired.

Maybe tomorrow will be better.

April trip to Seattle

2009-04-03T10:10:00.000-07:00

The basic theme of this month's visit to my specialist is that I need to do better.

The stress of moving and living with new people coupled with exposure to chemicals in the house (even at low levels) has put too much pressure on my immune system and prevented it from fighting the bacteria. Also, it made it so I couldn't handle the supplements that I need to take. Somehow, everything piled together gives me a cough when I am exposed to a wrong substance for too long. It's not really a cough, it's more like my lungs and throat feel too small to get the air in and out so I try to clear my throat but it dosen't help. I'm not certain what that's about, but if I can avoid exposure, it dosen't happen.

Basically, in order to deal with all these new changes, I've been letting things slide and I need to not let things slide. My specialist assures me in a very firm tone that if I don't gain weight soon, a lot of weight, then a slight breeze will kill me. By slight breeze I mean to say a slight cold or any additional strain on my immune system. My specialist was extreemly adamant on this point: do better or I die. I don't want to believe it's true.

Then we come back to the main problem: Exposure to wrong substances (like petrochemicals and the smells of old food, &c.) effect my autonomic nervous system which creates nausea, loss of appetite and other symptoms that lead to me losing weight.

So there we have it. If I don't want to die this year, and I'm pretty certain I don't, then I need to do a lot better. Not only that, the people in my household also need to do a lot better too. My dad understands because he's seen me when I'm healthy and knows that I'm not a hypochondriac. He also knows how serious this all is. But I don't know how to communicate to others that live with me. I'm certain they all think I'm a nag when I ask them to do something like not read a newspaper right next to me or to leave the window in our very dank bathroom open when they leave so that mold (an extreemly dangerious substance for me according to all my doctors) dosen't grow due to the lack of fresh air and get into my system (I'm not certain how that happens, but I'm assured that it will). I say these things. I explain why it's necessary, and all I get is a grumpy face and an "I will" or ignored. It dosen't happen, so I say it again. Same thing. Do I give up? Do I let them do whatever they want because they have been doing things this way all their life and they've never had a problem so I shouldn't have a problem. Do I let them do whatever they want at the cost of my own life? That seems rather stupid from my point of view, but I am asking a lot from them. And, since they don't seem to listen, maybe it's not worth the familial strife. Yep, I'm getting really bitter about this. But I can't stand it when people say one thing and do another. I can't stand it when people don't listen. I also can't stand it when people expect me to know what they want from me when they don't tell me. I also can't stand the fact that my specialist is so adamant that my life depends on things getting better.

Right, end of rant.

Today, I'm going to use what energy I have left from my trip to clean my room and to get rid of all the little wrong substances that have creeped into it over the last month. Also, energy permitting, I'm going to toss out all the news papers laying around the common area in hopes that that will reduce the nausea. This trip has shown that I'm only nauseous at home. Away from home, I'm starving. So it must be something environmental. But what? I don't know.

A tick

2009-03-11T16:44:00.000-07:00

I saw my first tick today. What's more, it was inside my home: uninvited.

To think, I've had these tick born infections for over 20 years and I've never seen a tick before. Sure, I use to play outside constantly as a youth, but I never thought to look for them before. Then, today, on a piece of firewood, there one was. Just sitting there looking hungry.

It was such a small little bug to cause such big problems. I should have thought to keep it and send it off to the lab for testing, but I was so offended by this critter that it got smooshed as soon as it was identified.

There is snow on the ground and the ticks are already out playing in my wood pile. I never would have thought it.

Joints

2009-03-03T11:33:00.000-08:00

I use to believe that everyone had the same every day aches and pains as I did. You know, that it's usual for a ten year old to have joints that average between three to six out of ten on the pain scale. I felt that way, so it wasn't anything out of the ordinary. I wish I still felt that way.

I don't know if my joints hurt much more than they use to; I even suspect that they hurt less. It's just that now I know they aren't suppose to. I that being aware of how things should be bothers me more. It makes the pain less endurable. Having constant pain all over one's body, every single day and night, even if it never really gets all that bad, is demoralizing. That's the joy of having an illness whose primary symptom is rheumatoid arthritis.

If I take a regular old pain killer then the joints feel better and I can accomplish things. That is until the side effects of the pain medication set in. It's doing something wrong to my liver. I get a dull ache in the right side which gets worse the longer I stay on pain medication. My chemical sensitivity spikes and I get listless both physically and mentally. So, I don't know what to do. I don't like pain but I don't like these side effects more.

What other things can I take for pain? I've modified my diet to exclude things like tomatoes and other things known to trigger inflammation. I've added anti inflammatory foods like turmeric. I've tried glucosamine sulfate (sp?). It works, but it sends my blood sugars and moods all over the place so it's out.

There must be something I can have that will not bug my liver. Any thoughts?

photocatalytic oxidation system?

2009-03-02T14:24:00.000-08:00

Does anyone know anything about photocatalytic oxidation system for people with Chemical Sensitivities?

At first glance it looks like any other filter system that is suppose to be wonderful but ends up emitting more gasses and chemicals then they eliminate. Any thoughts?

Lymeing with Chemical Sensitivities

2009-02-28T20:41:00.000-08:00

The only benefit I can see in being annoyed with the people I live with is that I get a lot of knitting done. I got an extra large amount of knitting done today by the way.

The problem seems to be that I have to choose between my own health and the health and happiness of the people around me. They are, apparently, mutually exclusive.

If I express what I need to get better (a chemical free environment and to not to be tortured by eating my favourite foods in front of me when I can no longer enjoy them) they either don’t listen or they think I’m attacking them personally. When really, from my point of view, I’m just asking for a modification of behaviour.

You see, it’s like this: Every action I take has a complex calculation of costs and benefits. Is writing something down in my notebook to remember it later more important than the ill health created by being exposed to the ink, pen, and paper? Is the cathartic experience of blogging worth the time on the computer (a very wrong substance for me to be around)? Is storing the clothes in my dresser worth having the dresser in the room and being exposed to the gasses offed by the finish on the dresser every night as I sleep thus putting further strain on my immune system? Is it better to sleep in a room with a sub zero temperature or to have a heater in my room which not only emits electro magnetic frequencies but also heats up the above mentioned dresser causing it to off more gas than it would if it was cold?

These are some of the simpler calculations. I have to do this literally thousands of times a day because we just don’t have the resources to create a bubble that I could live in. Keeping in mind that I am now so sensitive to petrol chemicals that I can tell when a plastic pen enters the room in someone’s pocket. This is the one symptom that seems to be getting worse while all the others are beginning to improve. And it’s getting much worse very quickly. This is enormously difficult for me and it doesn’t help that I keep messing it up and making the wrong choices.

The people around me have given up so much already for me, moved into this home with me, have stopped using some chemical products, and such, but not all. How is it that my friends who I don’t interact with very often are more conscience of my physical needs than the people who are suppose to know me best?

The people I live with let things slide more than I do. They aren’t aware of how ill I get from this because I’ve been doing relatively well in other areas lately. I’m aware of their sacrifices, grateful for them, and I find it difficult to remind people of certain things at the time they do them. If I can catch them before the act is finished, I’ll gently ask them to do something differently; however, most of the time I catch them too late. They think they can do things behind my back and I won’t notice. I notice. Why don’t I say anything then? Because I feel bad to tell someone off after the deed is done – bad doggie. I’m learning how to do this more and more, but it doesn’t seem to help.

The reason why I say things so forcefully and so often is because people don’t seem to hear me. They don’t remember, hear, care, whatever, so I say things again with more force. I feel like a total nag. From my point of view, if they cared about me then they would listen and remember. I don’t ask for these things just for a lark. I ask because they are important. From there point of view, I think they feel that they are already moving heaven and earth for me and I’m just ungrateful by demanding the unreasonable. I am grateful - I just wish they could try harder. Move heave, earth and hell so to speak. The devil is in the details and it’s the little things that are getting to my health most of all.

In many ways it was far better for my emotional health in the apartment.

I don’t know how to make this better. I want to fix things. If something is broken, I see how it is suppose to go and then try to find a way to make it go that way. How do I fix this? I have yet to discover a successful way to communicate. Is it Yurt time? It’s bloody cold out there tonight, but by the time I build a yurt at the far side of the property and dig a long drop, it should be a little warmer at night.

Now, it’s back to the knitting. Need to calm down further before attempting to communicate again.

PS: Yes, I know the people I am writing about will probably read this. And yes, I have said all of this to their faces before, albeit, not quite so eloquently. If this turns out to be a way I can successfully communicate with them, then I’ll use it. It’s cheaper than buying/building a yurt.

Dirty Electricity

2009-02-20T10:53:00.000-08:00

My GP lent me something called a Gauss meter this week. You plug it into an electrical outlet and it measures the amount of electromagnetic radiation given off by that circuit. As we know, radiation is bad and is known to aggravate many conditions, especially those that involve detoxification of the body at a cellular level and conditions that involve defective immune systems, like Lyme.

They theory is that I might be one of the people who are naturally sensitive to electrical fields or perhaps, Lyme (and co-infections) have changed my body in such a way that I have become sensitive to them. Given that I do badly in places like computer labs and under certain kinds of light bulbs, this sounds plausible.

In many parts of Europe, I've heard, they recognized something called Electromagnetic Hypersensitivity (EHS) in which certain people experience adverse reactions when exposed to electronic fields. Symptoms include:

... include skin rash, sleep disorders, muscle and joint pain (fibromyalgia), chronic fatigue, depression, headaches, dizziness, nausea, difficulty concentrating, memory loss, irritability, anxiety, weakness, muscle spasms, numbness, tingling, leg and foot pain, "flu-like" symptoms and fever.

This list is a lot like the list of Lyme related symptoms. My GP suggests that it is possible that the symptoms caused my infection are made worse by EHS.

A side note: people with sever Dyslexia often have physical reactions to fluorescent lights and LED lights - pretty much anything with am almost visible flicker rate. There is documentation of sever migraines and a worsening of their language skills in this sort of environment. It's worth looking into to see if there is a correlation between EM fields and this ailment.

So, I took this Gauss meter home and tested the outlets in my home. Most of them were around 100 units, one was as high as 140. According to the back of the meter, the Kazakhstan government recommends a rating of no higher than 50 for safe human exposure; ideally 25 or under. My ratings aren't so bad, most houses measure around a few hundred.

I took the meter to my old home, the apartment. The meter doesn't go up that high. The EM field was completely off the scale. Perhaps there is a correlation between this and why I am improving since I moved away. I also took the meter to my old work place - also off the scale. Two places where my symptoms were at their worst had high readings off the scale. There is definitely a correlations between this and my symptoms.

When the apartment sells and I have enough money to pay for it, I'll buy some filters for my bedroom to lower the effect. If it helps, I might gets some for the rest of the house. I know that I feel quite ill in the basement where the internet lives, it might be related to all the electronics or the proximity to the electrical panel and exposed wiring (unfinished basement). This is the main reason why I'm away from the internet so much these days.

Dirtyelectrisity.ca is where I've been getting most of my information about this topic, also the book Detoxify Your Life (you remember, the smelly book). You can also purchase meters and filters from the website.

A bumpy Herxheimer

2009-02-18T16:43:00.000-08:00

I’m not surprised that my Herx came with the move. The dust from the boxes, the chemicals that remain in the new home, the stress of it all, each worked with the bacteria to make this the worst Herxheimer yet. It was mostly just pain everywhere. Every mobile part of my body cried out at even the thought of getting out of my chair and walking across the room. I did my best not to listen and tried to keep on doing stuff anyway. I got a fair amount accomplished, mostly meal planning, but a few tasks here and there.

The air at the farm (my new home) is very good for me: outside the house. Inside, I think it’s worse than the apartment was, but we are working at clearing it up. Soon it will be warm enough that I can open the windows and clear out this place. Also, there are still boxes everywhere! I want to unpack the; however, every time I start to do so, the dust from the cardboard makes me quite ill. So, they can’t stay and I cannot unpack them. I’ll have to wait until someone has time to unpack under my direction.

So, what other adventures has Lyme given me these last few weeks? There are these red bumps growing on my hands. They don’t itch or bother me in anyway unless they are touched, then they feel like shards of glass embedded just under the surface of the skin. This is wonderful because it’s all over my palms and on my fingertips, there are bumps upon bumps. My specialist said that this looks like Bartanella lesions caused by that particular bacteria fighting against the antibiotics. The bacteria are apparently at their most vicious when they are most threatened. I think it could be so, but if it was these lesions, one would expect to see them on my feet before they appear on my hands in such quantity. I have over three dozen easily visible bumps on my right hand and over a dozen on my left. I’m told they look vascular which means something to do with the blood. They don’t respond to change in diet however; touching certain things like the rabbit’s hay make them much worse about two days later. This is very similar to something I get when I garden and have had since I can remember; however, those were much smaller lumps, a lot less of them, and didn’t hurt nearly so much. When I asked my GP about these nasty bumps my GP was baffled. Two other doctors were called in to look at them, which included poking me, looking in my mouth and asking lots of questions. The conclusion was that it could be several things, none of which are a good fit and I get to go see yet another physician: a dermatologist.

Since moving to this farm, I have felt that my goal of being better by the time I turn thirty might actually be possible. I am told that ‘better’ dose not mean a return to the life I had before; but, I hope it means being able to spend a day working in the garden, cooking meals and playing with yarn in the evening. I don’t know what kind of job I would be able to work at, if any, but perhaps I can grow enough produce to sell and pay off my student loans. The future is very uncertain, but at least I’m feeling hopeful about it again.

What I've been up to

2009-02-13T09:01:00.000-08:00

I forgot to say, if you are interested in what I have been up to this last week or so, I wrote about it on my other blog. See this post.

Internet-less herx

2009-02-12T21:06:00.001-08:00

I've been herxing and to make matters worse, I've had almost no access to internet to keep me entertained. The new house has so far proven to be good for my health, but I think the stress of the move and the persistent lingering traces of petrochemicals that I am sensitive too are the trigger for the Herxheimer. Those nasty little Lyme bugs are taking this opportunity to revenge themselves on me.

Pills

2009-02-05T10:10:00.000-08:00

Four of these bowls of pills with breakfast and dinner. One with lunch. Each pill feels like swallowing an apple whole. I can't wait to be better.

The Lyme controversy continues

2009-02-04T10:44:00.000-08:00

Now I don't have all the facts on this case, but I find it interesting how both sides of the issue feel very strongly that they are doing the right thing.

I've only come across the LymeMD blog recently, but I find it very informative and the information well researched and presented. I really appreciate that this person was willing to share his/her experiences with us. It is especially useful for those of us with little or no access to someone trained to treat Lyme or it's co-infections.

The recent research I've read on Lyme, especially out of Europe, seem to my limited training to be adequite. The sample sets are good, the conclusion drawn matches the numbers given, and the method appeared sound. So, I wonder, what is it that makes a medical establishment accept one bit of research and not another? And why, why, is it so difficult for accepted medical treatment procedures to change to reflect the changing world?

I just got probiotics up my nose

2009-02-01T22:40:00.000-08:00

This is going to sound really stupid, but I took my probiotics and one of the pills got stuck half way down. It must have broken open and when I burped, I got a bunch of pill dust up my nasel cavity. At least it dosen't sting like the charcoal dust. Probiotics up my nose kind of tickle.

Right, netti pot, here I come.

(sorry, spell check is broken today - hope I didn't make too many spelling mistakes. Take pitty on me and don't mention them)

No title. Really, I just can't think of one.

2009-01-30T22:07:00.000-08:00

My last few posts have been grumpy. I know. And I am, and... I'm not. I don't know how I am right now. I'm feeling a lot of things.

I'm frustrated at the world, I'm frustrated at myself. I'm also scared. I don't really know why.

There is a lot going on right now what with trying to get better, moving, trying to get care (it's still a fight to receive treatment for something the local health authority tryes to ignore) and, well, a bunch of other things. There is a lot of change; and lately, I've not been able to adapt. I like change, I use to seek it out. Heck, I even moved to a whole other country once. But these days, even something put away in the wrong drawer in the kitchen is beyond my ability to adapt. I seem to rely on my kinetic knowledge (sort of like knitting - one teaches one's hands how to knit, the mind is just there as a guide on what to knit when) rather than any mental skills. I memorize where the furnisher in my room is so that I don't have to turn on the lights and use my eyes. If something is put where it shouldn't be anywhere in the house, it usually leads to me hurting myself. Not to mention, I still sleep walk. I've even written essays in my sleep. I once made banana bread in my sleep. It's all very odd. I don't think I've ever managed to leave the building while asleep; but if you do find me walking down the street in my PJs, please gently guide me home.

Oh yes, I got an A+ on that essay by the way, all the other sleep-essays were A or A-. I wish I could write all my papers that way.

I feel scattered today. My friends and family are doing everything they can to ensure this transition is as easy as possible on me. Of course, the fact that my health puts this much stress on them is stressful for me. But, there's no way out, is there? This has to be done in order for me to get better. My specialist tells me that I wouldn't be alive if it wasn't for their help. But, it's difficult to be so dependent on others when I am use to doing things for myself.

I've decided that I'm going to set a goal for myself. I want to have this infection under control and be off antibiotics by my thirtieth birthday. It's not saying I'll be fully better by then. I'm told I'll never be like I was before, but with a great deal of vigilance, I can lead a somewhat normal life. Now, I know I'll most likely forget this aim by the time the week is out, but it's a nice goal. I wonder if it's possible.

Joints say we are in for a bit of bad weather this week. I hope they are wrong. I wish this post wasn't so rambling.

a list of products that effect my health and things that can be done to improve it.

2009-01-30T08:37:00.000-08:00

I wish I had a sensitivity meter too.

Anonymous, thank you for your comment. It's good to hear from the other side what it's like to deal with this. I know it's difficult for people around me. I wish there was an easy way to say "this yes, this no". I think the hardest thing for me is when people don't ask. If we don't communicate, how can we know? I'm not certain what else I could do to make my needs clearer. But then again, the physical reactions I have are slow and build upon each other. It takes months to figure out what substance is bothering me. It doesn't help that the main symptoms are confusion and grumpiness.

Maybe if I lay it out for myself, I can see it more clearly and then be able to communicate what I need better. I'll give it a try and maybe someone here can help me learn how to communicate this with those I care about.

Some symptoms: The first symptoms that shows there is something bothering me are grumpiness, being tetchy, and impatient. Also dizziness, fatigue, joint pain, and low blood pressure; but those are harder for people around me to detect. The brain fog that I get makes it difficult to identify that there is a problem right away, it gets in the way of the cause and effect part of my brain. But like I said, it often takes months for me to identify the specific substance that is making me ill and weeks to realize that I am getting worse. (Oh the joys of an infection in one's brain.) It's not just these symptoms that are the trouble. It also puts a strain on my immune system which stops it from fighting the primary infection that is causing all these troubles. The more exposure I have, the less likely I am to ever get better.
From the bathroom: All cosmetics like hand lotions, toothpaste, shampoo, soap, any scented product, shaving lotion, cologne, makeup, and the like are the worst possible things to have in the same building as me. If you hate me, this is what you use. From experience, if I use these products, I'm in bed for a month. Not joking. Not exaggerating. It puts me right back to the beginning. I can manage being around someone who uses some of the more mild cosmetics for a few hours, but I need several days to clear my body of their effect. If I'm exposed to this sort of thing for several days in a row, even faintly, it has a cumulative effect that is disastrous for my health.
More on cosmetics: There are a few cosmetics that do not have this cumulative effect that the regular stuff does. Burt's Bees for example are easy for me to be around. I can only use their Beeswax Lip Balm and one or two other products myself, but almost all their other products are safe to use for people who are around me. They don't make me feel good, but they don't have that same toxic accumulation that most products do so they can be used day after day. Most soaps, even eco friendly health food shop, all organic, stuff, have an ingredient in them that is retched for me. There is one olive oil bar soap from Greece that works for me (funny thing is, it's the least expensive and longest lasting soap I've ever known), but everything else leaves a heavy sent on people after they use them. Yes, even the unscented ones. A few other products you can find in the health food shop, but not all health food shop cosmetics &c. are safe. Only buy things with a full ingredient list. No ingredient list = no buy. If they have words containing the letter combinations "ethal", "methal" and/or "glyc", then they are completely unacceptable. Also note, companies change their recipes all the time so what was good one month, may not be the next. Add to that the fact that my infection is constantly changing how my immune system reacts - adds new sensitivities every few weeks - I assure you it's just as difficult for me to know what will effect me how. When in doubt, just ask.
Laundry: In the apartment there is a coin operated laundry. Lots of people do their laundry there, and they use lots of different products. All commercial laundry products are out. I make my own laundry soap and vinegar makes a good fabric softener. I don't use the laundry downstairs because I discovered that even after putting six loads of wash through before mine, using nothing but cleaners I could handle, the scents from the commercial products still transferred to my clothing and made me so ill. Even though I know that my dad and Brazil don't use these products on their own laundry when they do the wash, I can still smell it on their clothes, especially after they have just done a wash. Even having the product in the house, in the bottle, not opened, is bad enough. If you want to see the effect this has on me at full strength, take me down the laundry aisle in a grocery shop. I advise that you call an ambulance first. [Again, NOT EXAGERATING!]
Good Laundry products: The soap I make for my laundry averages around one to three cents a load. The Soap exchange makes a laundry soap and softener that even though I can't use on my own clothes or in the machine I use for washing my clothes; however, the sent dissipates within about an hour of being washed and is great for people who live with me to use. It's also only slightly more expensive than the stuff I make myself. Note: unscented only.
The kitchen and general cleaning: Guess what. Regular cleaning products are out. Even most eco-friendly dish soaps tend to bother me. I don't know what it is about them. Ones that are clear are better than coloured ones. Sunlight is perhaps the worst. The Soap exchange is tolerable, but still not good enough for me to be in the same room as it. Actually there was one I bought in the US that felt fine, but I don't remember what kind it was. As for general household cleaners...Nope! I have a long list of alternative cleaning recipes that can be used for household cleaning. They actually save a huge amount of money and work well with only slightly more elbow grease than the expensive commercial stuff. I bought this one eco friendly cleaner for the new house, but it has to be used several days before I go there and the house well aired afterwards. And most importantly, not used while I live in the house.
Note: If you are just visiting me for a few hours then don't worry too much. Stay away from scented products when you do you ablutions and don't worry too much about make up (I love you no matter how you look and given that I have almost no facial recognition ability, I wouldn't know if you had make up on or not). But, if you are going to see me more than one day at a time, or if you are going to be in close proximity (small room, no ventilation) for an hour or more, please do what you can. Every little bit you do do, equates to days less I have to suffer through this recovery.
Most important, if you don't know, ASK.

I read this list and all I think about is how stupid it sounds. All these every day innocent little things stand between me and good health. Both my doctors say I need to have minimum, or preferably no, exposure to any of these. They especially state that to get better sooner, non of them may enter my living environment. I'm desperate to get back to my life. What do I need to do to help people realize how important this is? How do I say it? Do I get them to pay the three thousand plus dollars a month to treat me out of their own pocket? Do I put a scent jar on the counter and people have to put five dollars in it when ever they come home smelly? Would that make them realize how much an innocent two dollar bottle of shampoo is actually costing me? Two to four monts of recovery if someone in my house were to use a product like that for a few weeks. If I put it in those terms, does it make more sense? I can see it clearly: We don't know every single thing that makes me ill and retards my recovery, so every possible thing that could harm me must stay away! There are general themes that I know makes me sick. They need avoiding. But how do I, with my rather blunt personality, say this to people I care about without them thinking it's an attack on them as a person? It's the chemicals (which, by the way, do harm to them too and leaves them more vulnerable to future illness) that I'm angry at. That, and the infection in my body. Not the person. It frustrates me when a person dosen't learn or is careless, but it's not the person who I am upset at. It's their action. How do I communicate this? I feel stupidly lost in all of this.

Maybe it will be helpful for people to have a field guide to being around me. I've missed out a bunch, but even still, I was worried if I posted this, some people in my life might take things personally. It's not unprecedented. People usually take what I say personally. I'm not as careful in real life as I am in my blog - I say it how I see it and that dosen't usually end well for me. So, I asked Dad to read through this. He's very good at identifying when I'm not feeling well. He can actually tell if a substance is bothering me before I can. I asked him, "would people take this personally if I posted this?" and he says, "if they take it personally, then so much the better!"

overwrought

2009-01-29T09:20:00.001-08:00

Sorry about yesterday's post. I'm just frustrated and a bit over-tired and a lot over-chemical-ed.

I had two outings this week where I spent time with people I respect and admire. One group was very understanding and respectful of what I am going through. Even to the point where they wouldn't hug me if they had used fancy shampoo that morning. Very much appreciated. I think that maybe they have known someone who has become ill before, or maybe they just are the kind of people who get this sort of thing. The other group I've known for several years now and I know they are struggling to understand what I'm going though, but sometimes I think it's too much for them. They have their own lives to lead and, I suspect, have trouble to give it more than a few moments thought. They act what they think is for the best, but it actually does more damage than good. They made some effort, what for them must be a huge effort, to remove those things that harm my health, but it wasn't nearly enough.

People in my life, even those who see me every day and know just how bad things can get, forget. I wonder if they think because I wasn't severely effected by a substance the first time I was exposed to it, then it's okay to bring more and more of it into my environment.

For example, the boxes we are using for packing. The first week, I managed to tolerate them. Yes, it bothered me physically, but I did my best to ignore it because I knew it was necessary. But constant exposure has done quite a bit of damage. The dust from packing and other chemicals that have crept slowly back into the home life have caused fatigue, joint pain, dizziness and nausea. Among other symptoms like low blood pressure and brain fog. Something as simple as someone washing their hands at a public washroom and then coming home. Even if it's three or more hours later, I can still smell it and am effected by it.

I wonder should I get more strict? Especially in this new house. The whole reason for moving is so that I can get better. Days like today I think that no matter how much I inconvenience others around me with my health needs, it's nothing compared to what I'm going through. It's damn near impossible to identify what effects me, so everything that could possibly effect me should be removed. Be strict so that things like hand lotion and aftershave never return to the place where I live? I feel like that would be cruel to those who live with me, but the alternative is never venturing from my bedroom. What kind of life is that? Then again, what kind of life is this? I miss my life.

This bothers me so much not just because it makes me feel physically ill, but also because it delays my healing. At almost $40 thousand a year, I can't afford to draw this out any longer than necessary. I want to be rid of this infection in two years or less, so that I can return to a kind of real life. I know I'll never go back to the life I had, but I can at least live a close approximation of it. I just want this to be over. I don't want to spend ten years pumping my body full of expensive and potentially dangerious drugs.

The Invisible Lyme

2009-01-28T09:42:00.000-08:00

"But, you look so good," "At least you've lost weight," "But you don't look sick," "You seem fine to me," "She's always got energy when I see her," "She's just faking," "She's just being lazy," "You spoil her too much, she'll never get better that way," "There's nothing wrong with you, you've just gotta eat more," and so on.

This is very different from what my specialist said this month; "She's fighting for her life, quite literally. It may not seem that way to look at her, but she is. She's fighting her her life here. It's not going to be an easy or quick battle. She needs help."

I've been trying to imagine how I would think of someone like me if I met them five years ago. Someone who is allergic to over a dozen foods, sensitive to chemicals and certain kinds of light bulbs. Someone that is effected by the most basic components of every day life. I think, from experiences I've had in the past, it's very hard to understand. Even with the best intentions, a life change that strong is impossible for someone to get their mind around if they haven't experienced it. They have good intentions, but don't realize just how light a breeze it takes to topple someone over. No matter how hard I tried with my friends in similar situations, I always felt that I never fully understood.

People have the best intentions. Well, most of them do. The problem seems to be trying to fit new ideas into old belief systems. Belief systems that they have never examined - that were formed from what other's tell them. It's like food beliefs, only it seems to extend far beyond what people eat. Different people react differently. I find this fascinating, but I also get very depressed by it.

A Lot of my friends and family - not all of them, but enough - blame me for my health.

I've noticed that friends with eating disorders in their background, either themselves or a loved one, think that I have nothing more than an eating disorder myself. Why else would someone suddenly start losing weight so quickly? Very few people say this directly to my face, but more than one has said this about me to a loved one. This seems to be the most common opinion of what is wrong with me. Bacteria are invisible, therefore they cannot be the cause of this.

It doesn't help that my physical appearances is now in accordance with what society tells us it should be. I weigh now what I did when I was 15. My hair is long and shiny. Let's face it, my hair is actually quite lovely. I love my hair. It's the only physical part of me I have any real affection for. Not enough to remember to style it, or even to get it off my face most days, but that's nothing new. So if my body looks 'good' according to Hollywood standards, it simply cannot be unintentional. There must be something mentally wrong with me, and only that.

The problem with this point of view is that it depends on the fact that I care what I look like. I don't. Simple. Okay, I care enough to make certain I'm not smelly. I make certain that everything in my wardrobe matches each other so that I can stop being teased for wearing clashing colours. But, that's about as far as I'm willing to go to look good.

Until my health plummeted two years ago, the last time I weighed myself was in 2000, or possibly the year before. By mid 2007, I knew that I was getting a bit chubby. I know this because I had to buy larger clothes than before. The thing is I love eating good food too much to stop. Besides, I was on my way to looking like Nigella Lawson. She's the sexist thing to happen to food since chocolate, so I was quite content with that. Actually, if I had to choose, I would say my prefered size is 12. That's enough flesh on my bones so that I don't feel cold all the time, but not so much that my knees give way when I try to bend down. I don't know if that's skinny or not, but it's where I've felt healthiest over the years.

So, because I'm always riddled with self doubt, I wonder if my illness has given me an eating disorder. I don't know. I am certainly more conscious of what I eat these days, but that's simply because even traces of the wrong food (like I ate this last weekend) will send me to bed with intense pain for a few days or weeks. My body's immune response to wrong foods is that strong. The thing is, it's slow. I try to put on a brave front. That might be the problem why people blame me for being sick.

That's what this post is about really. I'm so tired of people doubting me and blaming me for being sick. Don't they know I do this enough myself? Every day I wonder where the balance is between doing something and not. Every day I worry that I'm being lazy. Every day, it's a struggle to get out of bed because things just hurt so much.

Is it my fault? I try to be brave and to be cheerful with people no matter how horrid I feel. I especially try to do this at home. I put enough stress on my family without them knowing just how I feel. And when I am feeling especially ill, what do I do? I hide in my room so that they won't see how much things hurt. When I go out, I save up my energy for days in advance. I don't tell my friends that I'll need days to recover. I enjoy being with people. I even need it. When I tell them that it's a huge victory that I'm out of my pajamas, level on the front door, they often think I'm joking or at least, over exaggerating. I'm really not.

Maybe it's because I try not to talk about my illness with others. I would love to tell them all about it. I would love to educate the world about it. But I don't talk about it much. I don't want to be the person who is always complaining about her health and even if I was, most people just don't understand.

If I can be cheerful and alert at a friend's birthday for three hours, surely I'm not all that sick. I don't look sick. At least not to the casual observer. I think this is what they mean when they say that Lyme is invisible. It would be possible to handle the symptoms if the social stigma wasn't there. But when some of the people most important in my world don't believe I'm ill, when they blame me for not doing something, when they hurt me without knowing it, just because they think they are doing the right thing... I don't know how to deal with that. I already hate myself for being ill. I don't need their help with that.

The last time I was in the ER due to pain, the nurse asked me that if I had to choose between the pain I felt then and having my arm slowly ripped off, which would I prefer. I chose the latter. I would still rather that. I wold rather have no arm (even if it meant no more knitting ever) than what I have now. At least then, people wouldn't act like it was my fault.

I wish everyone I interact with could read this list. Maybe they could understand better. Just because you can't see it, doesn't make it less real.

I want to thank my friends who do accept me. Especially my yarn-friends. I'm so glad to know you. Your kindness means the world to me.

Got Lyme - gender and chronic Lyme

2009-01-27T08:18:00.000-08:00

Last year, I posted a survey on the side of this blog. Well, the votes are in, and I find it very interesting.

What I wanted to know is whether there is a difference in how patients with Lyme are treated that correlates to that patent's sex. If it could be shown that this discrimination occurs, then legal steps could be taken to improve the way Lyme is diagnosed and treated by the medical establishment.

The questions and the results were:

I'm male and was diagnosed and treated promptly
0 (0%)

I'm female and was diagnosed and treated promptly
0 (0%)

I'm male and was misdiagnosed and/or not treated promptly and am suffering because of it
1 (4%)

I'm female and was misdiagnosed and/or not treated promptly and am suffering because of it
10 (43%)

I don't have Lyme, but I would like to learn more about it
11 (47%)

I accidently found this page while searching for porn, no but seriously, I don't give a rat’s ass about Lyme
1 (4%)

This is actually very close to what I had expected given what I had read about other people with Lyme troubles.

The results of this survey show that of the people who participated, most did not have Lyme, none had been diagnosed and treated for Lyme in a timely manner, [and of those who later received a diagnosis of Lyme, most of them were woman.]

This is in no way telling of how things actually are. Not only is it a self selecting sample set, the larger population it represents are of people who read this blog, not the general population. So there is some bias there. But this survey is very useful. It indicates that there is a difference. Most importantly, it tells us that more investigation is warranted. This issue of different medical care for males and females [with Lyme] is an area that would benefit from further study.

Now, if men and woman with Lyme are treated differently by medical professionals, there could be several reasons for this. The theory that fits best with what I have read about Lyme is that the bacteria has a stronger effect on people with high levels of Estrogen than others. So, woman may be more prone to develop Chronic Lyme.

If woman are more susceptible to this illness than men, [and the medical establishment fails to respond accordingly,] it would constitute discrimination on the basis of sex even more than just bad practice. It's like not treating ovarian cancer because less than half of the population is capable of getting this, and not all of them do. I would have to dive back into my biomedical ethics notes to find out which supreme court case dealt with this, but the conclusion was that not researching sex (used in the biological term for male or female, not in the STD way) dependent diseases must be researched.

Another theory that has been put forward is that in general, physicians still hold a paternalistic view of patient care. That is to say that they know what is best because they have the experience and the training, therefore, they don't need to listen to what patients say - or, if they do listen, they don't have to believe. It's like House says, "every body lies" so treat everyone as if they are lying and then we can get to the truth. Given that gender rolls in our society are still telling in how some doctors treat patients (from my own experience), the physician is more likely to dismiss Lyme's unpredictable symptoms as caused by depression in a woman than in a man.

There are other theories why this discrimination on the basis of gender or sex may occur. But non of them are justifiable legally. Not in Canada, at least. It's complicated why this is so, but basically, if a study could show that there is discrimination...well, it would be a great starting point to change how the medical establishment approaches the diagnosis and treatment of Lyme in this country.

I wish I was back at university so I could do this study myself. But that will be years from now, so I hope that someone does it before then.

[Errata: sorry for the extra editing of this post, blogger is having a stupid day today when it comes to formatting and deleting sections of text. Hopefully, this time will work better.]

Tetanus shot

2009-01-25T10:39:00.001-08:00

I got my Tetanus booster a couple of days ago. Yep, the new rabbit bit me. She's strong. But, it's okay. She was just being a rabbit and now I know how not to hold her. So, I rushed down to the clinic and saw a nurse. She checked to see what shots I had so far and what ones were expired. Only the Tetanus needed updating.

The thing is, after about half an hour from receiving the injection, I started to feel really good. I mean, I've had energy, some mental focus, and I've done all sorts of things. Yesterday, I went for a walk, did some mandatory shopping and even stayed at my local fibre shop for an hour or two. This is huge for me. Today, I've already been out and about. I'll do some laundry, wash my rabbit cage, and maybe even wash the bathroom. Also, the muscles are feeling better. Less twitching and cramping.

So, is there a connection between the Tetanus shot and my Lyme symptoms? What's going on here?

Getting ready to move

2009-01-24T10:38:00.001-08:00

I've been getting ready for the upcoming move to the new home. I'm quite worried about this even though we are taking steps to ensure that this will be as easy on my health as possible. Even still, I can't help but worry.

My G'pa moves into the house at the end of this month. For a week, Dad and him will rip apart the house to get rid of as many chemicals and things that upset my health as possible. This includes removing the forced air heating system (anyone want to buy some sort of oil furnace). I do very poorly with forced air, even with fancy filters, it kicks up dust in the house. Next, they will remove all the carpet. We are still trying to find a source of unfinished wood flooring, but so far, no luck. The next thing is to scrub my future room with vinegar and/or baking soda and to scrub the rest of the house with soaps from the Soap Exchange. There stuff doesn't tend to off too many gasses that bother me, but they do tend to aggravate my skin if I touch them.

We won't be able to paint just now. There are paints that supposedly are good for people like me, but it's not cheep and we need to spend money on other things right now. I think if we do paint, it will be in the summer so I can live in a tent (or maybe a yurt) for a month or so.

There is a wood stove for heating the main part of the house (kitchen, living area, &c) but we still need some way of heating the rest of the rooms. Preferably some way that you only heat the rooms you are using instead of heating the whole house all at once. We still have to look into this.

There is so much to do to this new house before I can move in. I've been thinking of applying for some sort of disability income. I don't like that idea, but I can't work. I wonder if there is any help for renovating a house due to health concerns? It's probably too late to apply but I did phone the local advocacy group to ask them about this. I'm still waiting for them to call back.

So there is a lot to do before I can enter the new house. Then, once it's ready and I move in, it's time to renovate the apartment so that we can sell it. Finances will be tight until it does sell, but all it needs is some cosmetics and new kitchen cupboards/counters.

I'm also worried about moving in with my G'pa. It's his house, so I have to adjust to his way of life more than he adjusts to mine. It will be interesting to see how things go with this. We have good communication between us, so I think if any tension comes up, we can talk about it. I hope he tells me if something bothers him. I suck at non-verbal communication and really cannot tell if something is bothering another person. I'm the type of person who acts on the words said, not the intentions behind them. I can't tell what someone means, so I act on what they say. Likewise, I say what I mean. This has caused tension with some of my friends in the past. They say one thing but wanted me to do something different - I did what they said and they got mad. The thing is, I want people to tell me if something I do bothers them. We can discuss this, and depending on what it is, it can be fixed either through understanding or altering behaviour. Yet, when I express myself about something like this to others, sometimes they think I'm attacking them, but really, it's the object I don't like (the behaviour or the item in question) not the person. Am I odd that I can separate the person from the behaviour? Am I ranting? I just don't understand people and I really need them to spell things out for me. I'm not smart that way.

Anyway.

I'm excited about the move. It's a huge step towards good health. I get to spend every day with my G'pa and my dad. I'm just nervous too.

Quest for a chemical free mattress

2009-01-17T08:27:00.000-08:00

They say we spend at least one third of our life in bed. These days, it feels like considerably more than that.

Sleep is very important for good health, it's when the body and mind reset themselves and much of the detoxification process happens at this time. One of the most common symptoms of Chronic Lyme (and the co-infections) is that no matter how tired the body gets, sleep always seems impossibly far away.

So, we couple insomnia (which is returning to my life with a vengeance due to the stress of the move) with chemical sensitivity and we get the need for a new bed.

At present I have a fairly standard North American bed. It rests on a metal frame, has a box spring and a coil mattress. I have no idea what this is made of and I suspect this isn't something I want to know. What I do know is that spring mattresses always feel uncomfortable as no matter how new or how expensive they are, the springs always find my pressure points. I've never had this problem with a futon. (Well, there was this one bed, but the mattress was too thin, the slats it rested on too far apart and several were broken.) On top of my mattress I have a feather bed. This is like a fitted sheet with an envelope of feathers sewn into quilted compartments. This is fairly comfortable and would be even more so if I was able to shake it out to redistribute the feathers more often and let it have a day in the sun every three months. Sunlight is good for killing little nasties. I also have a down pillow. This I bought early last year as the regular foam pillow I had was making me feel all stuffed up thanks to whatever the foam was made from.

Even with my feather bed to offer a barrier between me and my mattress, it still causes problems for me. So, I've been doing some research into alternate bedding.

The Good Planet:

The first shop I visited was The Good Planet. They have a shop in town that carries natural rubber mattresses. They also carry things like books, cleaning supplies, soaps, incense, &c.

What I like best about this shop is that it is walking distance from where I live at the moment and the staff were willing to answer my numerous questions. When I visited they had two mattresses on display and a cross sample of a bed's innards. The mattress cover is made of something they call organic Damask fabric. In my experience 'Damask' can refer to several different fabric types depending on the context and the historic period; but I think this felt like a tight cotton weave. There is a layer of wool then the Natural Rubber Mattress, then more wool and then more Damask fabric. The bed is custom made for you and takes a few weeks to be put together and delivered to your door.

I'm not certain what Natural Rubber is. It was described to me as the sap from the rubber tree, mixed with something-oxide, and heated. I understand that Latex is made in a very similar way and I'm not fully understanding the distinction between the two. Natural Rubber does sound more impressive though. The wool used in this mattress is 'pure wool', again an ambiguous term. I'm thinking that they mean wool in the official way which refers to fibre from sheep, but again, I'm not clear on that either.

I couldn't tell if I reacted badly to the mattresses from this shop because there were too many other chemicals and environmental pollutants (like soaps and incense) in the shop clogging up my system. I think that since it is in town, I would like to walk down there on a day when I'm feeling fairly free of chemicals, stand outside the shop, and ask the clerk to bring the sample out for me to smell. Even so, I don't think this mattress is for me. There is a history of latex allergies in my family and there are too many unanswered questions for me to invest that much money in a mattress.

Soaring Heart:

This Seattle company focuses on natural bedding. Since I was in town anyway, we stayed an extra day just to visit their shop. After some frustration navigating our way around Seattle, we finally found Soaring Heart.

The first thing I noticed inside the shop was a lack of chemicals. There were a few fabrics near the front of the store that had some sizing or dye in them that bothered me, but once I got to where the mattresses were, I didn't notice it anymore. The next thing I noticed was the selection. After visiting the first shop that had only two mattresses made of the same materials, this shop was like Christmas. They have all different types of natural mattresses: all cotton, cotton wool, cotton latex, organic, inorganic, and so on. For most of the beds, they can re-construct the mattresses when they begin to show signs of wear which tends to be after several years (ten or so?). By reconstructing and adding to the existing mattress, this cuts down on the environmental impact.

I'm quite impressed with the sales person. I had so many questions and the answers he gave were detailed and relevant. For example, I wanted to know what kind of sheep the wool they used came from, how was it processed, where it was processed, and so on. He knew most of the answers and what he didn't know, he phoned up the supplier and asked them. Most of the materials used in the construction are from smaller companies and done as environmentally friendly a way as possible.

We were there an hour or two and for almost all that time, I had the poor fellow running up and down stairs, fetching different products, moving around show room mattresses to get the feel for different combinations, and eventually, after much sampling and smelling of mattresses, I found the one for me.

From looking at the web page, I thought I would go in for an all organic cotton mattress; however, on closer smell, cotton didn't feel a good match for me. The organic cotton wool mattresses were tempting, but still, not perfect. The mattresses with Latex in them evoked a chemical sensitivity (or possibly an allergy) so they were out. Everyone reacts to mattresses differently because every-one's body is different, so this isn't a reflection on the product, just my overly fussy body.

Eventually the sales person got the idea to bring in a brand new mattress that they had just received the day before. This mattress was made from mostly organic wool from, if I remember rightly, 14 different breeds of sheep. Why mostly organic? Well, apparently some of the farms have not yet received their organic certificate. I'm told it's quite expensive to get this bit of paper in the US, especially if you are a small farm. These farms, like many local small farms where I live, follow the organic guidelines only haven't received the certificate yet.

This mattress was a little bit more than I had hoped to spend, but the moment I laid down on it, my body knew that this is what I needed. It's interesting that a wool mattress was the one for me. Several things sort of came together in the last few weeks that I didn't notice at the time, but now that I think about it, are very relevant to this decision. Little things like how someone was telling me about wool batting being used in therapy for arthritis and other ailments. Also, that evening I read in a unrelated farm magazine about a wool bed that was over a hundred and seventy years old and still in great shape having only been re-built once (the innards had been re-carded, a few new layers added, and then compressed and rebound) in all that time. Most importantly though, it was my body that told me this was the one.

For more on wool mattresses see Shepherd's Dream (USA), Shepherd's Dream (Canada), and Nature's Wool. Some of these companies mentioned on this post offer a sample pack free of charge or for a small fee. I suspect that almost all of them would be willing to send something like this upon request.

January's trip to the Lyme Specialist in Seattle

2009-01-16T13:30:00.000-08:00

I got home from Seattle a couple of days ago. I'm just starting to recover this afternoon. We stayed an extra night so that we could visit a few shops in preparation for de-chemical-ling the new home (more on that later). The thing is, one extra day of travel means an extra few days of recovering when I get home. When I'm this tired, I get a cold like symptoms - runny nose, cough, sore throat - and the shakes when I try to do anything with my hands. I think this is something to do with the Lyme or a co-infection as it always happens when I push myself too hard. A couple of more restful days and I should be back to my usually self.

Overall, my specialist says, I'm doing far better than expected but I'm not to get ahead of myself as I have a long road left to travel. One of the reasons why I am doing so well is because I've taken the effort to change my diet and environment. Many people with Lyme don't, I'm told. They take the drugs and the supplements, making only minor changes to their style of life. They still get better; however, my specialist says, it takes much longer. It's good to hear that all the effort my family, friends and myself are putting into this are paying off.

The antibiotics I'm on are a good fit for now, so I can keep taking them and don't have to adjust to any new ones this month. Eventually, my specialist wants me to start an expensive antibiotic that is good for killing on of my co-infections (which one I can't remember, but it's the one that causes me to wake up every night between 2:08 and 2:14 because I feel too hot). The antibiotics I've had so far have been covered by BC medical. My GP has enough supporting data to prescribe them. One of the antibiotics is very good for treating arthritis, and since I have it something fierce in my jaw and ex-rays to prove it (I thought every-one's jaw was suppose to feel that way), my GP can write me a script for that one. However, the blood tests are inconclusive for the co-infection this new antibiotic would treat, so I would have to pay for it myself - but that is something to worry about in a month or two.

There are a few adjustments of the herbs and supplements. One of the things that has been bugging me most this month is my muscles - they either contract and don't relax, or they jerk when they do relax. These are classic symptoms of magnesium deficiency. The Lyme bugs mine the body's tissue for magnesium and other minerals and use these to make cysts that look like little termite nests. This causes some serious deficiencies. There are also some herbs to help me sleep and some supplements that will help with this month's stress and the upcoming move.

Let's see, what else? Oh yes, I have to have my heart and liver tested again. Some of the symptoms point to problems there - tightness in the chest, bouts of high blood pressure for the heart, poor response to chemicals points to liver not detoxing the body properly. Other than that, everything seems to be on the right track.

Detox the Detox

2009-01-11T09:01:00.000-08:00

My GP recommended I get the book, Detoxify for Life: How toxins are robbing you of your health and what you can do about it, by Dr. John Cline MD, BSc (a fellow Islander, I might add).

I like the idea of this book. It discusses how an accumulation of toxins in our body can lead to poor health and how it takes a great deal of effort to rid ourselves of these toxins and return to good health. Cline discusses how we don't notice this build up right away; rather it builds up slowly with little or no symptoms and requires just one more exposure to upset the balance from healthy to not healthy. Toxins discussed in this book include heavy metals, electromagnetic fields and other things along these lines.

One thing that I found very interesting is that the different cases he gives as examples of the damage a toxic overload can cause, almost all have identical symptoms to Chronic Lyme. If one were to read a book about Chronic Lyme and then read this book, one might think that the case studies given were of the same people. However, it would be a mistake to say that one theory is right and one theory is wrong. Rather, I suspect (and my GP confirms) that there is a correlation between people who have Chronic Lyme and people with toxic overload. I think one can say that there is a causal relation between the two, but I don't know which way it goes. It may be that people with toxins in their system are more susceptible to Chronic Lyme, or maybe that people with Chronic Lyme are unable to process and get rid of every day toxins. Perhaps it is a two way interaction and they both contribute and reinforce each other. I haven't found any studies to say one way or another, but it would be worth looking into.

This book, my GP says, is a great starting place for detoxifying both one's diet and environment and will be of great benefit for me to detoxify my new home before I move in. There is, however, one little thing that I don't like about this book...

...I can't read it.

The ink and paper are too toxic for me to read, even outside. I can manage about half a page before I have to go lie down for an hour or two. I find this extremely ironic. I've had it open to air out for about a month now, but whatever the substance is that I'm reacting too hasn't dissipated at all. I'm not certain what to do next.

An email about Lyme in BC from MLA Mr Cubberley

2009-01-10T08:54:00.000-08:00

Mr Cubberley wrote me a lovely response to the email I sent him about my current plight.

I find that I am increasingly impressed with this fellow. The more I learn about him, the more I feel that this is someone who actually looks out for the interests of those who he is elected to represent. I'm far too jaded a person to think that this is a common event, so when I say this, believe me, I'm impressed.

The email was personable and directly responded to my email. The general theme was that it is important to show the health authority the physical and economic damage that arise from them not recognizing and treating Chronic Lyme. Also, by keeping him informed of my progress and the cost of my treatments, he can use this information to pressure the health system to improve it's policies.

The Lyme Light

2009-01-09T10:42:00.000-08:00

I found The Lyme Light the other day. It looks to be a fairly small but active community of people who have Lyme or know someone who does.

What I like most about this site is that it is active. Within a day of signing up, I've had all sorts of people welcoming me to the site. Also, I like how it's not just focused on the medicine or on the controversy of Lyme. Rather, the focus seems to be more about supporting each other and offering an environment where one is accepted for who they are, not what illness they have.

Not that I'm complaining, but... I'm not a fan of sites that play music automatically. I usually have my own music playing on my computer when I surf the net and I hate competition. Other than that, I think this is somewhere I'll be hanging out.

lately

2009-01-08T09:41:00.001-08:00

Lately, I haven't been doing too well. It seems that whenever I finish a Herxheimer, my symptoms change. Every four or five weeks I get a whole new collection of things wrong with me. If nothing else, at least this illness is creative.

The new year has brought a return of my insomnia and some new muscle symptoms. I've had muscle cramping and twitching since I can remember, but never on this scale. I think they call it a charlie horse, only I don't ever get the muscle cramping in my legs. It's always my arms or chest. It's been especially bad this week. The other night I had it in my shoulder and it was so strong that I think it did something to my nerve or tendon in my arm and my fingers are still numb from it.

The funny thing about these muscle cramping is that it really hurts. Okay, that's not the funny part. The funny thing is how to make it stop hurting. When it hurts, the body instinctively tenses up which makes the muscle hurt more. The only way I know to stop one of these is to relax the entire body. Complete relaxation. Only, you know, the body resists this because it's experiencing intense pain. Okay, so it's not funny, ha, ha. I can usually calm it down in about twenty minutes, but sometimes, if it is really bad, it takes up to an hour.

Apparently this is really common in Chronic Lyme patients. It is something to do with how the Lyme bacteria extracts magnesium and other minerals from the body and uses these to make their nests. A deficiency in magnesium and zinc leads to muscle problems like these. It's also been mentioned to me that this is one of the issues that can lead to heart defects in Lyme patients. I hope that doesn't happen here.

Lack of sleep, plus pain, plus stress, plus some other issues, really gets me down. But I am working on it. I'm going to have a nap for the rest of the morning to try and catch up on some sleep, then some home made chicken-ginger soup (I have such a craving for this lately, and green tea for some reason), then, if it's still moderately nice outside, I'll go for a walk to visit my favourite fibre shop.

I have some other things I would love to tell you all about, but really, my brain needs to be a bit more awake for me to do them justice.

Sigh

2009-01-07T11:35:00.000-08:00

The new year is off to an 'interesting' start. I've had a great deal of news this last week, not all of it good; most of it, I can't do anything to change. On top of that, it's been a challenge to get myself back on track health wise. I'm making a decided effort, but it means taking energy away from doing the things I enjoy. I have such a finite amount of energy that it's a case of robbing Peter to pay Paul. It really is the oddest feeling to not be able to do the simplest things.

I'm looking forward to seeing my specialist again this month. I'm not certain how well the current antibiotics are working. They seem to have a negative effect on my moods. But that might be caused by current worries or diet. Most of my energy this year has been spent meal planing (energy that would normally go to blogging) and the occasional cooking (energy reserved for playing with yarn). The goal is that given how few foods I can eat and that I have no appetite, I need to make my meals as appetizing as possible. I know I feel better when I eat more, even if my stomach hates it. But at least this is one thing that I can make better.

A new year of Lyme

2009-01-01T10:24:00.000-08:00

Well, guess what? It's a new year.

I have no desire to think of it as a new year. I don't even know if it's any use in making resolutions. Not that I ever do. This year, even if I did make some resolutions, I doubt I'd keep them longer than a week. Why disappoint myself? My desires to act reaches far beyond my body's ability to do so.

If I think about last night as the move from one year to the next, then I feel let down. This time last year, I thought that 2008 would be the year that we would discover what was wrong with me, cure it, and I would be fully healthy by August. Ops. We did at least discover what was wrong, but that wasn't 'till September. I can't even imagine what things will be like this time next year.

It's not all horrid. Lyme has given me some gifts. I see the world differently. I know what's important to me. My family and friends. I've learnt the importance of community. I now know that you can't always stand up on your own two feet. That's what friends are for; to help you up when you fall and for you to do the same when they need a hand. I've improved my diet and soon I'll remove all toxins from my environment.

I have been given this opportunity to step back from my life track and look at where it was going.

Once or twice, when I lived in England, I would go to the train station and hop on which ever train was leaving next. Don't even look at where it's going until you get there. You can buy the ticket from the guy on the train or when you arrive. You don't have to worry about the destination, just the journey. Maybe you make a vague decision to go East or North, but nothing more substantial than that. I feel like my life up to now has been a bit like that. I get itchy feet and feel the need to hop on a train and go somewhere, doesn't matter where, just gotta move forward. Now, well, it's again like Brit. Rail, I'm stuck in a car on a side rail. For those of you who haven't traveled by rail in England, this is a real hazard. Sometimes the train gets stuck in no man's land for hours and all you can do is sit there, waiting, and thinking about where you are trying to get to and where you came from.

Just about everything I experienced in the UK is an apt metaphor for life's little ups and downs.

But that's where I am - not the UK, the metaphor - I knew what vague direction my life was heading, I didn't especially want to get there, but I figured I would worry about paying my fare when I arrived. Now that track is closed to me. I don't know what happens next.

I don't know what this year has in store for me. I don't want to think about it. I want to think about today as not the first day of a new year, but rather as just another day. Today is one day closer to good health - and nothing more.

Wellsphere

2008-12-29T11:11:00.000-08:00

Okay, this is interesting: Wellsphere.

I've been poking around wellsphere this morning and it looks to me to be a valuable source of information. I've already joined the Lyme Disease community and a community that is suppose to offer you support if you are trying to gain weight. On this site you can set goals for yourself, such as gaining 30 pounds, and as you work towards this goal, you earn points. I'm not entirely certain what these points are for, but it looks like a good way to encourage yourself to achieve health related goals.

I'm going to play with this site a bit more, then it's time to eat lunch.

Lyme induced chemical sensitivities

2008-12-28T21:17:00.000-08:00

My chemical sensitivities are very... well, I would say 'interesting' if I didn't have to experience them for myself.

I know from reading labels on the few cosmetics that actually post ingredients, that I react strongly to words with 'ethal,' 'methal,' and 'glyc' (like glycol or glycerin) in them. That's not an exclusive list by the way. I feel that if I can stay away from chemicals that bother me then my body can put more effort into fighting this infection. The problems are that I'm not certain exactly what triggers my reactions and that I hate to impose my own needs on the people I live with. It's bad enough that I have to avoid these things, I don't want to prevent other people from living a normal life.

It seems to me that my reactions go two ways. The most noticeable way is when I'm suddenly exposed to too much of what effects me. For example, if I go shopping or if standard cleaning products are used near me. This has an instant effect on me. I'm dizzy and confused. Sometimes I faint (there is that autonomic nervous system again). Sometimes I cough. But mostly it's a response like slowly going into shock (tingling skin, digestion shutting down, vision decreased, dizzy, &c.). It usually takes me two or three days to recover from this. I retreat to my sort-of clean room (not allowed to remove the carpets in the condo but that will change in the new house), turn on the air filter, open the window and try to recover.

The other way I respond is slower. It's like how dust accumulates. You don't notice it at first, then one day the sun shines on the mantel and you think, Ahk! This place is a mess. I think it's a threshold. I can take a small amount of exposure one day, but if I am exposed to the same thing several days in a row, even in low quantities, my health gets far worse than when exposed to intense substances.

I think this might be like boiling a frog. (Sorry, for the nasty image. If it helps, I've never actually boiled a frog and have no intentions of doing so.) When you cook frogs, you don't put the live frogs into boiling water. They jump out because they recognize immediately that being immersed in boiling water is counter indicative to a long and healthy life. If you want to boil a frog, what you do is you put him in a pot of cool water. Let him swim around a bit, then slowly heat up the water. The change in temperature is gradual, so the frog doesn't notice the danger until it is too late.

(as a side note, I have no idea why I know how to cook a frog. I'm fairly certain that Mrs Beeton never wrote about this. Though she does have some experience with French cooking. But that's not important at this juncture.)

Once I reach this threshold, every little thing bothers me, even things that wouldn't usually bug me. I get grouch at this point, partly because I don't have the strength to clean my environment enough to make things better; but mostly, because this could have been avoided. I should never have got to this threshold in the first place. Chemicals make me sick, therefore, chemicals have to stay away from me and I have to stay away from them. I've changed my diet. Why is it so much more difficult to change this?

I have some friends who went through something similar. I suspect you will read this, so feel free to correct me on anything here. This sudden onset of a chemical sensitivity is very hard to pin down. The allergist cannot test for immune responses to inorganic substances (says my allergist) so the best thing to do is to remove all possible triggers from your environment.

From what I understand, you set up a kind of clean-room. You remove everything that could be a possible allergen, including the flooring, and you live in there for a few days to see if the symptoms go away. If they don't, you need a cleaner room. If they do go away, then you slowly introduce one thing into your environment at a time. If you react to that, then you know to stay away from that substance. The thing is, you have to be very strict with this and so far with this aspect of getting healthy, I suck.

One problem is, where I live now I can't remove everything that bothers me (carpet) and being in a condo above a smoker, below people that are constantly renovating (two years now) which desloges dust from our ceiling, and near a main road with plenty of car fumes coming in my window; I haven't been able to produce a clean environment to start from. In the new house I hope this can be done. But I worry. I forget so much, I let things slide and then I become that frog again. That stupid, forgetful, Lyme coloured frog. If I keep forgetting the importance of this, how can I expect others in the house to remember? They don't know how I am feeling, especially if I don't tell them. I'm worried and I'm disappointed in myself.

Dial 811 for non-emergency medical advice

2008-12-25T15:07:00.000-08:00

One of the things I've noticed most over the last few years is that when I'm in the Emergency Room (either for myself or for a family member) there seems to be a good third of the people waiting there that could easily be seen at a clinic the next morning. On the other end of things, my family has the habit of waiting too long before seeking medical help. I think in this day and age, people just don't know when to seek medical help, and what level of help they need.

I know I've talked about this before, but it's interesting how much medicine has changed for the 'average' person in the last hundred to hundred and fifty years. It use to be, for the working and middle classes, that going to the doctor was a luxury. It meant taking unpaid time away from work, it meant travelling great distances, and it meant, depending on where you lived and what was wrong with you, a great financial expense. I wonder if today, in Canada, because so much of our medical care is provided at a greatly reduced rate, if we take too much for granted. Maybe we don't bother to learn when and for what we need to go to the ER for and what complaints can wait a few hours to visit a clinic. Waiting too long for medical care can also put undue burden on the medical system. Without going to medical school, how are we to know when to seek treatment?

I learnt this week that, in BC at least, we have a system in place where we can get this kind of advice. It's a non-emergency line that we can phone for medical advice.

Speak with a nurse about your symptoms, consult with a pharmacist about your medication questions, or get healthy eating advice from a dietitian. You can also find the publicly funded health services and resources you need, closest to you.

How come no one told me about this before? Apparently it's been around a while now. What a great idea. If people would use this more, it would take a great burden off our over taxed medical system, the health authorities would save money then maybe they could use some of that money to treat things like, I don't know, Lyme.

That number: 811. Easy to remember. 911 for emergencies, and one less (811) for non-emergencies. (I wonder if there is something like this in other parts of the world?)

A letter to my soon to be MLA

2008-12-24T12:53:00.000-08:00

Well, I'm becoming a regular political activist these days. Two letters to politicians in as many months... I'm a regular wild thing.

I feel very impressed with Mr. Cubberley's letter to The College. He takes a much more didactic (I think that's the word) approach to the issue. Focusing more on the effect that their recommendations have on the people rather than my analytic way of analyzing the origins of their statements. I think his way is far more useful when it comes to patient care.

Here's what I wrote:

Hello David Cubberley,

I’m very impressed with the letter you wrote to the BC College of Physicians and Surgeons dated December 18th 2008 about the treatment and diagnosis of Lyme in BC. It’s a wonderfully well worded letter and it addresses many concerns that my family and I have. I want to thank you for bringing this issue to their attention.

I don’t know if this interests you; however, as I will be living in you constituency as of February 2009 (yet another family who has sold their home to pay for Lyme treatment in the US) I thought that it might be useful to know that Lyme treatment is a major concern for our family.

After many years of baffling my family GP with ever increasing symptoms, he suggested I seek a second opinion. I was very fortunate because my new GP, after excluding all the other possibilities, suggested that it could be Lyme. The BCCDC tests came back negative; however, given my history and symptoms, my new GP felt convinced that it was indeed Lyme and I had contracted it at least twenty years ago (possibly in Ontario, but more likely in South Surrey, BC). I don’t remember a tick bite or having a rash, but I was quite young at the time and didn’t know to look for it. Given the current climate fostered by The College, and the lack of training in this area, my new GP referred me to a doctor in Seattle who is better qualified to confirm the diagnosis and give treatment. I am, or I should say that I was before I fell too ill to continue and I hope to be again, a student at the University of Victoria. I’m only four classes short of my BA in philosophy and I can’t wait to get back there and finish it; though, I think I’ll focus a bit more on biomedical ethics side of things when I return. I have considerable student debt and have relied heavily on my family and friends to fund my treatment. They have been more wonderful than I could have ever imagined, but it shouldn’t have to be this way. My understanding of the Canadian health care system is that we should grant equal access to health care and not to be discriminated against because I managed to contract some spirochete. This makes me feel disillusioned in and disappointed by a healthcare system that works well in so many other ways.

My specialist in Seattle tells me that I have a good chance of defeating the Lyme bacteria with two to four years of treatment; treatment I can not afford. Unfortunately because the infection has gone so long untreated, there will most likely be permanent damage that will prevent me from living a normal life. I cannot imagine what my life would be like now if I had been diagnosed twenty years ago when I first began to exhibit symptoms. I have a more full account of my adventures with Lyme on my blog: http://ihavelyme.blogspot.com/ .

It makes me very sad, and a little angry, to think about how little training physicians have in this province when it comes to Lyme.

Thank you for taking a stand on this issue. It’s inspiring to know that an elected representative is willing to stand up and speak for his constituents. It doesn’t happen nearly as often as it should.

Avid voter,

Signed me.

Reading the College newsletter on Lyme

2008-12-24T10:40:00.000-08:00

Thanks to the Lyme Action Group Blog, I've been reading a publication (pdf) produced by the BC College of Physician and Surgeons. As usual, I have good and bad things to say about this publication.

I'm curious where they got their numbers. So, apparently, now less than one percent of ticks in BC are capable of carrying Lyme. Last time I looked up the BCCDC, they said two percent. But that's okay, they might be working from different data. Perhaps older data? I would love to see them cite the source for this number - especially given the drastic changes in insect populations and distributions in our province over the last five years. Pine beetles anyone? Also the fact that we have a huge pile of snow on the ground in Victoria is visible symptom of climate change; something that also effects insect life from one year to the next. To be happy with this number, I would suggest testing ticks every year, or at least every two years to get a more accurate representation of the population and how it changes over time.

Next, even if we accept that less than one percent of ticks in our province carry Lyme, it DOES NOT FOLLOW that we have that few cases of Lyme in humans. It may be that the data is wrong, perhaps a sample issue (wrong time of year, not an adequate representation of the population...) or perhaps an issue that testing for Lyme is very difficult and not always accurate (which testing method did they use anyway?). Also, logically, if less than one percent of the tick population has Lyme DOES NOT LEAD TO less than one percent of the human population has Lyme. Legally and ethically in this country (and province), we are not permitted to treat patients on the basis of statistics. Each patient must be treated on the individual symptoms and needs that they present. It's an issue of autonomy and person, when we approach this from an biomedical ethics stand point. It's an issue of case law and the charter of rights and freedoms (section 15, my personal favourite) when we approach this from a legal stand point.

So, statistics, logic, ethics and law tell us that physicians cannot treat Lyme on the basis of how many ticks in this province have Lyme.

What's good about this article?

Well, I'm very happy that it acknowledges the possibility that patients can get Lyme AND that if left untreated it can lead to complications. I suppose that's a step in the right direction to having this illness recognized.

Side note: They tell me that Aids went through this kind of controversy when it was first discovered. I wonder what it must have been like.

I'm a bit sad by the article this write up refers to at the end. I think it would have ended better if it simply admitted (yes, some physicians actually do do this) that they don't yet know enough about Lyme and issue a call for more research.

In conclusion: I don't know if much will change thanks to this. It still remains that physicians in BC are uneducated in this regard. There is not enough data and therefore there is no one who is trained and willing (there are a few ID doctors in town who are trained'ish but not willing to see Lyme patients - illegal (discrimination on the basis of disease), but understandable given that they would risk their licence if they treated someone like me.

Nothing changes for me. I still must go to the USA each month for treatment and the BC health system still does not pay for it. At least people are talking about it.

Rereading this post I've noticed that my writing-brain is still on vacation. At least the Herxheimer is letting up a bit (or we are in for a few days of sunshine and good weather - it could be either). I'm off to read Mr. Cubberley's letter. I'm curious to see if we came up with the same issues. It makes me feel very happy to know that early next year I'll be moving into his area.

That's telling them

2008-12-24T10:32:00.000-08:00

I like this:

BC's College of Physicians & Surgeons gets a talking to

One step closer to improving Lyme diagnosis, education and treatment. That's super-awesome for a politician.

Just thinking

2008-12-23T22:28:00.001-08:00

I don't have anything specific to talk about today. I'm just in the mood to write down my thoughts and if, by some strange chance, they turn out coherent, I'll press the 'publish post' button.

It's been a pretty painful day today. My joints feel all swollen and rusty, typical Herxheimer for me, and I'm tetchy. I can't think clearly and words, well they are comply aphasic. Normally I can find a word close to the word I want, but not today. Today, complete sentences come out different than what I wish to say. "Can you help me move this to the other room?" came out as "Are you dexterous in your arms?" This has gotta be one of the weirdest herx days so far. I'm looking forward to tucking myself into bed and saying goodnight to today.

I should take pain killers for my joints. They keep telling me that being in pain causes something bad which leads to something which creates more inflammation and wrong immune responses. I can't think of the middle part, but the general theme is that I should nip pain in the bud. The thing is, I can't stand how even a simple Tylenol makes my brain feel. Start getting into the semi-opioids and I feel completely out of it. My GP once mentioned that it might be that my liver isn't processing certain toxins properly and this causes me to get stoned on one Tylenol.

So what do I do instead? I sit in my room, avoiding everyone so that they don't think I'm angry at them. I'm not. It's just difficult to be cheerful when everything hurts. Good grief, even thinking hurts.

But, Herxing is good. It's a sure sign that bacteria are dieing. Death to spirochetes! That's actually an amusing name for a blog. Lyme: Death to spirochetes! Maybe not.

My specialist specifically said that a strong Herxheimer reaction to the new antibiotics was desired. It means that these drugs should be compatible for me. to me? Ug. English brain fading.

So, I'm happy, and I'm grumpy, and I'm tetchy. The holiday season is a bit stressful, especially because I wasn't able to make the gifts I wanted to give. Then again, I can finish them in the new year and pack them away for next Christmas. I'm especially glad I'm not spending time with difficult family members; on either side of the family Christmas tree. I can imagine hours of listening to some distant relative, drenched in perfume and fabric softener I might add, lecture me on how I should just try harder. After all, they would say, it's all in your head, just put the effort in. Just because they may have been a nurse twenty plus years ago, or knew someone who was a one, doesn't mean that they are up to date on what's going on. I hate being young and sick. At least there is a good chance I'll get better, but the way some people act towards me...

I'm so glad I'm not going to enjoy that pleasure this year.

I can't actually tell if this is a happy post or a sad one, so I'll label it both. It's just what it is I suppose. Like everything else these days. I have very little control with this whole thing. I can only control what I do with the energy I do have. There is something very zen about just letting things happen. I'm not good with zen. Zen is not me. I like control. I miss it.

Herxing for the holidays

2008-12-22T10:09:00.000-08:00

I declare this a herxheimer.

The weather isn't helping (I still think my bones are telling me that there is more bad weather on the way) but at least all this snow is beautiful. It makes me want to move back to Ontario (the land of my early childhood). Then I remember the mosquitoes.

I'm looking forward to a day of baking holiday goodies, cleaning house, and weaving. The way I'm feeling so far this morning, I have my doubts that this is all going to happen, but I'll do my best.

I have such a craving for chestnuts today. Is that usual?

Herx or weather?

2008-12-20T11:12:00.000-08:00

Maybe it is the weather after all.

From UVic School-Based Weather:

FPCN11 CWVR 201307 Forecasts for the south coast of British Columbia issued by Environment Canada at 5.00 AM PST Saturday 20 December 2008 for today and Sunday. The next scheduled forecast will be issued at 11.00 AM.
Greater Victoria. Wind warning in effect Snowfall warning in effect. Today..Cloudy periods. Increasing cloudiness late this morning with 30 percent chance of flurries this afternoon. Windy. High minus 3. Wind chill minus 18 this morning.
Tonight..Cloudy. Snow and local blowing snow beginning this evening. Amount 10 to 15 cm. [That's huge for our city and it's on top of 20 or more cm of snow already on the ground] Wind east 30 to 50 km/h becoming southeast 60 to 90 this evening. Temperature steady near minus 3.
Sunday..Snow and local blowing snow. Amount 5 to 10 cm. [what? 5 to 10 MORE cm of snow?] Wind southeast 60 to 90 km/h. High plus 1.

We will just have to wait and see if I feel better after the weather changes or if it is a Herx.

Herx number three?

2008-12-20T09:02:00.000-08:00

Either I need more sleep, the weather is about to take a turn for the much worse or I'm entering my next Herxheimer. I did sleep fairly well last night, I haven't checked the weather report yet, but I did double up my new antibiotics earlier this week which are suppose to produce a herx (if they are working) and there has been a fairly large amount of stress around me lately which is also herx-friendly. I'll know by tomorrow if it's a herx or not.

The weird thing is that my teeth get sore and loose just before a herx (or bad weather) which I don't understand. I know I should go to the dentist but they not only costs money, they hurt my jaw. How is a dentist going to get at my teeth when the jaw no longer opens more than a few centimeters? I have no idea. I'll worry about it later. I have some clove oil hanging about which should take care of the tooth ache which will go away in a day or two. It never last more than three days. Weird, eh?

Biofeedback feedback

2008-12-19T22:29:00.001-08:00

You know, I wasn't certain at first, but after three days of practicing biofeedback (it gets really hard after the first task, you see, we have these tasks that we try to perform by relaxing our thoughts or our body or by breathing, tasks like stacking rocks by not being emotionally attached to our thoughts, and the first one, creating a stairway with our breath is really easy, but then, well, my mind doesn't like not thinking. It's weird.) I'm pretty sure that I can feel this strange, but slight electrical current in the finger sensors. If I put in on my hand, my poor arthritic hand, it seems to inflame the bits that hurts (which are up the wrist and quite a ways away from the finger sensors). But if I put it on my right hand, my slightly more healthy hand, then all I feel is this buzzing like slight electric pulses running through my bones and skin from one sensor to the other. Actually what it feels like is that it's coming from the two sensors (not the one that takes my pulse) and meets somewhere in the middle of the back of my hand. It's the oddest feeling and so slight that it's almost not there. I couldn't figure out what on earth it could be doing.

I looked it up and sadly I can't remember the details right now but the sensors test the flow of electro-something on my skin with a galva-something. Yep, gotta love that Lyme. I miss my brain.

My dad thinks that I feel it because, as my specialist said, the Lyme bugs have eaten away the insulation around my nerves. This is also, my dad says, I can't remember that particular conversation with the specialist, one of the reasons why my autonomic nervous system is the pits. Now, if only I could remember to take my fish oil, it is suppose to help repair this and grow new insulation or something.

I'm actually far too tired to be blogging right now, so I'll cut this short and go to bed.

Night.

WHO on Electromagnetic fields

2008-12-19T10:42:00.000-08:00

Interesting document (pdf) by the World Health Association on Electromagnetic Fields and their effects on health.

Environmental Health Association of BC

2008-12-19T09:35:00.000-08:00

Now this I like: Environmental Health Association of BC

After breakfast I'll spend some time reading their web page. Maybe there will be something there that can help with my new adventure.

Biofeedback and Lyme

2008-12-18T08:45:00.000-08:00

One of my biggest problems stems from my autonomic nervous system acting up. My chemical sensitivities, my food sensitivities, my response to stress, and my ability to faint at the drop of a hat; or, I should say to faint if a hat drops on me. These all trigger a response that is controlled by the autonomic nervous system (especially that vagus nerve thing).

From what has been explained to me by various physicians, the autonomic nervous system is an older part of the brain. It controls, usually without us even noticing, the every day functions of the body such as heart rate, breathing, perspiration, blood flow, digestion, &c.. I'm told that when the body is perceived to be under threat, say a lion is trying to eat you or you fall off a boat into really cold water, then this system readies your body to face these challenges. It, I'm told, stops processes like digestion so that your body can focus on more important issues like running away from the lion. Or, with the hypothermia example, it shuts down blood flow to your extremities and brain so that it can focus on preserving the core of your body as long as possible.

With me, this system is over enthusiastic. If I eat a food that triggers an IGG immune response, like soy, my system thinks that it's under threat and shuts down my digestion for four days or until I throw up. If I take acupressure or massage (we found that one out at the physiotherapist's) then my body responds by sweating, fainting, depressing functions like remaining conscious and basically goes into shock. It's worse with needles. It responds in a similar way, albeit, normally slower, to chemical stimulus. When exposed to petrochemicals for example, I get dizzy, confused, &c. The symptoms vary depending on chemical, intensity, and duration of exposure. But again, this is the same system of my body that is responding to a perceived threat.

There are naturopathic therapies for this sort of thing and homeopathic ones, some of them I am on, but it actually does very little to help except in the very short term. My GP and myself are of the opinion that allopathic medicine won't do much to help me in this area. My GP suggested biofeedback.

I know a surprisingly large amount about biofeedback, especially considering that I've never took the effort to read up on it. Ten years ago, wait, it was more than ten years ago now - am I getting old? Anyway, just over ten years ago, I met this doctor who had a very impressive resume (worked high up in the UN, was head physician for her country and their leader for several administrations, &c. - all in all, a very nice and successful physician). At that time she was working with and researching biofeedback. It was very interesting to talk with her.

What is biofeedback? Well, it is, at it's most simple construction, a way to be aware of your body's basic functions like breathing, heart rate, and other responses. By becoming aware of these, you can learn to alter them consciously. For example, you can learn a breathing technique that will reduce the tendency to faint when exposed to stimulus like having a needle poked into your arm by the flabotimist.

I feel confident that the science and theory behind biofeedback is good. And after much discussion with me, my GP recommended Healing Rhythms by Wild Divine as an affordable alternative to guided biofeedback training. This system I can use in my home every day before I go to bed, or anytime I have a spare moment. It comes with some finger sensors and software that allows you to see your response to different stimuli and also teaches different techniques on how to control your breathing, heart rate, &c.

My package arrived yesterday and too my disappointment, had over $100 COD. This was annoying as I had a long discussion with the woman I ordered it from as to the shipping. I was expecting to pay GST because they always want you to do that when you order something from the USA, but to pay an almost $60 brokerage fee to the shipping company on top of that was shocking. The parcel had also been opened and sealed up twice en root which also rather annoyed me. Everything was there that should be, but they certainly were vigorous at rummaging through the contents.

So, you know, I was a bit annoyed, but also excited at the prospect of becoming more healthy. I'm going to have to warn you that if you choose this product, and you are in dire need of it, don't install it yourself! After three hours of intense frustration, bouts of shouting, and the occasional bursting into tears, it was finally up and working. 'Though my heart wasn't - I developed that stressed induced arrhythmia I get sometimes. I consider myself fairly computer literate, so to take that long to install software, update software, change settings that new software changed back to original settings (four times), try program, update supporting software again, &c. is a sign that for those who aren't on friendly terms with their computers should most definitely avoid installing this themselves.

Once it was done I was filled with that sense of joy one can only feel upon outsmarting technology.

I gave it a go for a couple of hours last night, practicing calming down, and by the end of it my heart was beating fairly regular and I managed to sleep better than I have in a month.

My conclusion, once it's up and running this product is very helpful. I am confident that this will be a big help in the long term as it is at the very least suppose to improve immune functions.

Amusing myself with Lyme

2008-12-15T12:34:00.000-08:00

I'm having fun reading through all these Lyme jokes. Why didn't someone tell me about them before?

Here's one from Symptoms checklist:

As a Lymie was driving down the freeway, his car phone rang. Answering, he heard his wife's voice urgently warning him, "Herman, I just heard on the news that there's a car going the wrong way onI-15. Please be careful.""Hell," said Herman, "It's not just one car. It's hundreds of them!"

Now, this is exactly why I won't drive until I'm better.

Made me chuckle

2008-12-15T10:28:00.001-08:00

I got a lovely smile this morning while attempting to catch up on the 400 odd blog posts I haven't read in the last few weeks.

As a holiday present, there are some funny jokes on A Lyme Disease Journal. My favourite:

Three ladies with Lyme were discussing the problems of living with the disease. One said, "Sometimes I catch myself with a jar of mayonnaise in my hand, in front of the refrigerator, and can’t remember whether I need to put it away, or start making a sandwich.”

The second lady chimed in, “Yes, sometimes I find myself standing on the stairs and can’t remember whether I was on my way up or on my way down.” The third one responded, ” Well, I’m glad I don’t have that problem; knock on wood.” as she rapped her knuckles on the table…then said,”That must be the door, I’ll get it!”

I know, if you don't have Lyme or someone with Lyme in your life, you probably won't get most of these; however, if you do have someone Lyme-like in your life, I hope they make you smile as much as they did me.

Laughter is after all, the best medicine.

Back from the doctor's

2008-12-13T08:50:00.000-08:00

It's been a busy week. I've been spending most of my spare time sleeping since I've come back from Seattle. There have been days when I haven't changed out of my PJs until the evening when I get ready to go out for a holiday dinner party (my Guild sure knows how to throw a Christmas party). Still, it's been a good week. It even snowed for an hour yesterday night. Then it melted which was great because we had to drive home. Snow and driving, in this city, do not go well together!

So the visit to Seattle to see my specialist went very well. I was so disappointed last month with my rotten-banana-antibiotics. They made me so much better in some ways and dangerously worse in other ways. It was amazing, but I could think when on these pills. Worst thing is that I started to loose weight again, we are talking about a pound a day, some days more. I'm still working on stabilizing my weight again, gaining weight is a luxury that will have to wait until I'm healthier; simply not losing weight is my goal just now. But at least I had a week or two when I could think. That was nice.

I am beginning to suspect that this is what senility is like, but honestly, I can't remember the simplest things like, for example, my name level on the name of the person I am speaking too and have known quite well for years. The simple concept of time keeping has become abstract and meaningless. Dates have no relevance any more - though, perhaps, this is more a side effect of not working or going to class.

Anyway, I was beginning to feel bad, both physically and emotionally, about my healing process. I had succumb to doubts. I mean, how do you know you are on the right path? There are so many voices telling you so many contradictory solutions, how do you know who to listen too?

I feel now that I shouldn't have gone as long without seeing my specialist, or at least phoning to talk with my specialist. (sorry, the sentences get awkward when you are trying to avoid gender pronouns) For the first fifteen minutes of the appointment, I told the specialist how the medicine had made me feel. The next five minutes the specialist told me that this was a good thing because now we know where the bacteria are hiding out (the infection is strongest in my brain - I bet you're not surprised, I'm certainly not) and we now have more information and can tailor care to my specific needs.

The last forty minutes of the appointment was spent convincing me that I'm not doing as poorly as I think I am. In fact, given the state I was in when I first met my specialist, I am doing great, not good, my specialist made a very strong point of saying the word 'great' and wouldn't allow it to be subdued to the simple 'good' that I had hoped for. It's still a very, very long road ahead of me. But I'm doing the right things by changing my diet and environment and every thing in my life and this is perhaps why I am doing better than expected.

I think I need to start keeping better records of how I feel from day to day and from week to week. Maybe I will treat myself to a nice journal today, I am after all a Pisces and we are known for our love of journals and calendars and anything that helps us keep a record of our thoughts, knitting patterns, feelings, and phone numbers. Maybe if I can keep a record of my symptoms, I would be able to see if they are improving over time. Since my memory is so short, or I should say that my short term memory is absent, I need some other way of evaluating my progress.

My specialist also gave me a few tips on how I can do better. Staying away from malls is one vital task I must do (after today - I might sneak in and buy that journal, then swear off malls for the rest of eternity). Christmas shopping is to be done online or via a proxy who can go into the shops for me. Also, trying to gain weight would be a very good thing - I am working on that. I ordered a very simple and small thing online which should help me emotionally. At the very least it will give me an outlet for my negative emotions (something I'm not good at getting out). I'll show you when it comes. Also, I have something else coming which should help with my autonomic system and all the troubles it produces. This was recommended by my GP and, though it is a little bit pricey, I think it will be a huge help in the long term. Again, I'll show you when it arrives.

So, I'm on the right track. The new antibiotics don't taste like rotten bananas, they penetrate my brain so maybe I'll be able to think again some day, they don't upset my stomach, and they also prevent malaria. So far, the only thing bad that they do is make me extremely fatigued. I can live with that though it will limit the number of parties I attend this month.

As I read this post, I think my brain must still be extremely scattered. It could be the fatigue or a deep need for a second cuppa coffee. I think I'll go visit my Lebanese grocer and get him to make me some Turkish coffee. That stuff will wake up a rock which is what I feel like today - a not awake rock. I also do a good chunk of my holiday shopping there, dates, figs, &c. You know, traditional Christmas foods. I love giving away food, especially at Christmas.

Here's something I need to ask my GP about

2008-12-07T10:58:00.000-08:00

My GP has been onto me to cleanse my system. Everything from the obvious allopathic necessities of not eating processed foods or exposing myself to mold to the more naturopathic and less researched avoidance of things like dirty electricity and to use a gentle cleanse of the unusual suspects from my body (see this site for more on that). So I was very interested when I came across this article while I was drinking my coffee. In particular, this section:

One that I learned about recently is the Comprehensive Detoxification Profile test, offered by Genova Diagnostics: http://www.genovadiagnostics.com/. This test analyzes saliva, blood, and urine after taking challenge doses of caffeine, aspirin, and acetaminophen, in order to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body. It does this by identifying the absence of liver enzymes that are responsible for processing each of the above toxins.

It's very interesting to me because my liver enzymes are undetectable by the regular blood tests. No-one knew what that meant but they are the only readings that were definitely a sign of something being wrong with my body.

I have more reading to do on the topic when I come back from my specialist and once I get a hold of myself. I can't believe myself, I had such a great time yesterday day, better than I've had in months. I spent time with people I love and admire and did things that I enjoy. Yet, when evening came I was full of self pity. I don't understand myself these days.

yeah, okay

2008-12-06T21:58:00.001-08:00

Yeah, okay, I suppose I should tell you why I haven't been online much lately. The thing is, I'm tired. I keep forgetting my pills (probiotics and nutritional supplements) and the ones that I do remember to take have such horrid side effects that make me far more ill than the original infection. I hate the fact that I can't take care of myself. I love all the kindness and support I get, but I hate myself for needing it. I miss working. I miss doing things for myself. I miss being able to rely on myself. I don't want to have to second guess myself at every stage. I hate that I don't know how to answer the question 'how are you?' What is the answer? The truth? Do people want to hear that I'm miserable and in pain or do I tell them that I'm hanging in there, even on days when I don't feel like I am? Even enjoying myself with people I love makes me miss my old life so much. I just hate where I am at so much. I need to pull myself together and get back on track. I'm only part way into this journey, and it has a good chance of ending well, I just feel like I've lost sight of what I should be focusing on. I feel like I'm being such a sissy when others have so much more going on in their lives, things that are far more horrible than me. Why should I have so much trouble dealing with this when they face their adversity with such courage?

Next week, I'm off to see my specialist again. I'm full of hope that my specialist can get me pointed in the right direction and looking at things from a different point of view. I don't know if I'll be blogging much, I might just take some time off from the Internet. Maybe I won't even check my emails for a week. I'll just see how things go from here.

Not much

2008-12-05T09:10:00.001-08:00

Not much to say today except that I wished I believed in God or some other sort of divine power. Then I could pray to him, her or it that I didn't have to have Lyme. I really envy people who have religious faith. I think that their world is better for it.

Thank You

2008-12-04T08:07:00.000-08:00

A big thank you to everyone who participated in Trampled by Fleece and congratulations to those who received a thank you prize.

I don't have the words to say how wonderful it has been. But I would like to give an extra big thank you to those who made this possible. You really are the salt of the earth.

owe

2008-11-30T13:51:00.000-08:00

I just turned on my computer for a few minutes to check my mail. Been a pretty lousy day today. I don't like my rotten banana antibiotics. They feel like they turned to glass in my stomach and tore it and my intestines up, just like a cat does to a nice bit of furniture. I'll go to the Doc tomorrow and ask for something different. As for today, well, I've had just about as much of it as I can handle. I'm going back to bed.

My quest for balance

2008-11-28T07:30:00.000-08:00

I have a habit of pushing myself beyond what I am actually capable of. I've always had trouble keeping up with my peers physically. Whether it be in high school PE class or out in the real world; going to the pub after working a ten hour day, 7 days a week. I have never felt adequate when I compare myself with others.

When I do achieve something that I can feel proud about, the good feeling doesn't last very long. There is always the next thing to do. I don't know why I'm like this. What I do know is that most of what I've accomplished in my life has been through force of will rather than any physical capacity.

I'm not afraid of hard work, I've done the sixty or seventy hour work week and the fourteen hour days. It was terrible, not the work, that was, well, alright. How I felt when I was doing it was completely retched. After a few weeks of this sort of effort, my skin would start to feel taut, my thoughts would get light and my body heavy. Getting out of bed in the morning and making coffee was the hardest task and I don't know how I manged it except that I willed it to happen. I thought that I should be able to keep up with my co-workers, so I wouldn't listen to my body when it told me to stop.

Even when I enrolled in university for a rest, the hours were very similar, albeit, the work was less physical. For every one hour of class, I had to put in 4 or 5 hours of work just to keep up. Yet my friends could simply bang off an essay the night before it was due. The very same essay that took me two weeks of hard work. Again, even though my grades were good, I feel inadequate when I think about it.

The usual result of pushing myself to keep up with the rest of the world would be that about three or four times a year I would get sick. I mean, really sick. Stay in bed for two weeks sick. It was something like a cold with a fever. Now that I look back at my life, I think it was the Lyme acting up when my immune system took a holiday. I don't have much scientific support for this theory, but did have a cat with cat herpes. Every time she would get stressed, she got sick in the same way. Same with me. If I pushed myself too far, I got sick.

It's nice to know that my tiredness and tendency to get sick is not simply me not trying hard enough. I've heard that so many times; try harder, put the effort in, try to keep up, don't be lazy, do something with your life.

Now, well... life is different.

I would be telling a fib if I said that I didn't enjoy the occasional day wrapped in a warm blanket, drinking tea and doing nothing but watching old movies on DVD. I think that everyone should do this at least twice a year. It can be extremely satisfying in moderation. However, on the second day of this kind of activity, I'm board out of my skull by lunch time. No matter how bad I feel, I have to get up and do something, anything, so long as it is even the slightest bit productive.

I think that the thing that bothers me most about Lyme is the fear that I'll get use to it. It's nice having someone who loves you wake you up with coffee every morning. It's nice to be able to do things on my own time and to have a nap in the day time if I need it. It's too nice. I don't want to spend the next few years as an invalid, level on the rest of my life. I fear that if I get too use to being ill, I won't get better. I won't be able to live life again.

I set myself goals every day: must do, should do, would like to do. I always try to balance something I don't enjoy with something I do, so that I have some smile time every day.

In my effort not to be an invalid, I push myself. I don't listen to my body when it tells me no more. I know this is dangerious, but I have this pathological drive to be productive. If I can't work, I should at least do something with my day other than lay in bed. I know I'm going to crash again if I don't smarten up. But, how do I find that balance? How do I satisfy my need to do things with my bodies need to rest? I really suck at this. I have no experience at it.

Good eyes

2008-11-27T14:05:00.000-08:00

Good news, my eyes are A-OK for me to begin the nice antibiotic. That makes me smile. I can't actually see my screen right now, the eye drops made everything bright and blurry, so I'm going to shut off my computer and do the laundry.

Lyme Eyes

2008-11-26T08:48:00.000-08:00

Well, it's far too early in the morning yet again today. I had to get up super-early for an appointment with an opthamologist at 8:30 this morning. I have to get approval from this guy before I can start some antibiotics. The antibiotics are suppose to be fantastic for relieving arthritis symptoms, so I'm eager to start taking them. The problem is, they can quite easily make a person blind. Especially if one has a history of retina problems.

I've been very nervous about this appointment because a year and a bit ago, my regular eye doctor told me that my retina is high risk of damage. I was suppose to have it checked every three months to make certain that I don't go blind. I have had other things to worry about since then and have missed several appointments. I know, I'm terrible, but I hate bothering doctors. I especially hate bothering doctors that say, well, yep, nothing terribly wrong at the moment, come back in X months and we'll keep an eye on it. It just seemed such a hassle and at about $85 a pop, it also seemed too expensive for a diagnosis of 'wait and see'. (no pun intended).

So, I have a very strong feeling that I know what the opthamologist is going to say. I have all the symptoms of retina damage: flashes of light and of dark in my vision, major floaters, light sensitivity, decreased peripheral vision, cloudy patches that move through my line of sight, wavy lines in my vision like I'm looking through deformed glass, and static storms. I just don't know what can be done about it, if anything. At least I don't have to pay out of pocket to see this eye doctor.

The appointment was at 8:30 am, so I got up extra early to give myself time to get ready. I ended up gulping down my coffee and ended running around like a mad, headless chicken when I realized what the actual time was. Got down to the doctor's office just in time for my appointment, only to find out that the woman who made the referral for me wrote down the wrong date. She wrote, "Wednesday, 27th Nov." I just saw the Wednesday part. The appointment is tomorrow.

Wish me luck.

rain sad and happy

2008-11-25T09:12:00.001-08:00

Rain => sore joints => grumpy thumb => no knitting => sad me.

Spending time with yarn-friends => fun => happy me => feeling better.

Today it's raining. That would explain why my thumb gave up on me yesterday while I was trying to knit. But I got to spend the evening with some super-fun gals which made me happy. Tonight I plan to spend even more time with yarn-people, so that makes me glad.

Dried water extract

2008-11-24T08:04:00.000-08:00

On closer inspection, I think that the dried water extract is a bad translation and is suppose to refer to some sort of tea or mush made from the bark and then dried. This is just supposition, mind.

I don't know if it's a good or bad symptom, but I respond very quickly to changes in my medicine, diet, or herbal supplements. I can usually tell in a few hours to a few days if something is wrong for me. My dad tells me this is because I'm very aware of cause and effect on my body, but other's tell me that it's because Lyme has made my system over-sensitive that it reacts more strongly to stimuli than a healthy person. Of course, it takes a while to get the full benefit of a new medicine, but the effects tend to start quite soon into treatment.

Sorry, I think my English writing vocab recall is broken today, did any of that make sense? Maybe it's my English reading brain that's broken. I need to drink some coffee.

getting better

2008-11-23T10:15:00.000-08:00

I'm starting to get use to these rotten-banana antibiotics. Boy, oh boy, they sure are hard on me. But, there are some good things from them already. My ears are starting to clear up, my sight too, though I'm extremely light sensitive now. Also, the joints are starting to feel slightly less horrid. This is good.

Speaking about joints, my new herbal joint medicine is made from Indian Frankincense and dried water extract. What is dried water, anyway?

Not so sure

2008-11-22T13:10:00.000-08:00

I've decided that I don't like my new antibiotics. They taste like rotten bananas mixed with too much sugar, they make my stomach hurt, decrease my appetite and have doubled my chemical sensitivities. This is just the second day.

Edit: I also got a fever yesterday. How on earth can I get a fever on antibiotics? I suspect them of causing it, which really doesn't work with what I know about these strange drugs.

Arther-ite-us

2008-11-21T08:25:00.000-08:00

I wonder if there is an environmental cause for sudden onset osteoarthritis. Could it be a toxin in my environment or something dietary? Maybe this dirty electricity thing could be a contributing factor.

In the past few years, both my father and I have developed some hefty cases of osteoarthritis. In my case, all my previous aches and pains have been from that other kind of arthritis. Now that is changing rapidly. I've found no one who can explain why suddenly we both are developing this, but I think that it must be something environmental. I need to do more research into this.

Arthritis is on my mind right now because the last few days have been incredibly painful. Not the Herx painful where every joint feels broken and wrong, but a more specific pain. I have three areas of previous damage or over use, thumb joint, knee joint and jaw joint. In all three places there is evidence of osteoarthritis setting in, some worse than others. It could be the change in the weather that is aggravating my arthritis, but I'm wondering if it is because I've been off antibiotics for the last few days (I need to have some time without before I start the new ones). I didn't think that the antibiotics were doing much for my joints, they still hurt after all, but now, I wonder if they were actually moderating the symptoms and if so, just how bad have my joints become?

drugs make me laugh

2008-11-20T12:25:00.000-08:00

Okay, this is sort of funny. Not "ha ha" funny, more "want to cry" funny.

To prevent the rare side effect of my old antibiotics from making me permanently deaf, we replace them with two new antibiotics. One of which has a not-so-rare side effect of deafness and the other antibiotic has a rather common side effect of blindness. I'm not allowed to start the second one until I have a full evaluation of my eyes by some extra-special eye doctor, followed by regular check ups every second or third month while taking it.

I have to laugh because otherwise...

The only real benefit I can see in all this is that the second new antibiotic should help my arthritis which leads to more knitting. Oh, and I won't get malaria while taking it. That's gotta count for something.

Trying new things

2008-11-19T06:50:00.000-08:00

My GP encourages me not to settle on only one form of treatment. The theory is that although my current course of treatment with my specialist appears to be working, there is little scientific data (controlled studies) out there to say which approach to healing Lyme is the best. Since my current treatment is working, albeit slowly, my GP suggests that I should continue on with it but to combine it with other elements to it like detoxification or even alternative medicines.

Yesterday I visited a shop in town that sells all sorts of alternative healing items. These items are fairly good quality, I know this because we bought my grain mill there. It works very well and I use it several days a week. The only thing about that shop that I don't like, well two things really, is that there are a lot of chemical and scented smells from several of the products (new plastic and electricity smells in particular) which make me feel faint and I'm not a huge fan of the sales woman we always get. Even though many of the products are good, I often come out of there feeling like I've been misted in snake oil. I think it's just because she uses some of the more manipulative sales techniques that are very successful at convincing (how do I put this nicely?... actually I can't so I'll stop there)... ; however, I'm the kind of person who is very aware of sales techniques having spent much of my life selling.

That said, the sales woman did allow me to try out a device called OTO electric-reflexologist (something recommended to me by my GP). I did the full 30 minute cycle but was uncertain if it had a significant effect. The fumes from the rest of the shop had a strong negative effect which negated any positive feelings that the machine was producing. The vibrations from the machine also made me feel quite nauseous, which didn't help much. I did however have reduced swelling in my arthritic joints for several hours after I left the shop.

This device works with pressure points (I know that acupressure has a strong effect on me) and low level electricity (physiotherapists use something like this to strengthen muscle and reduce inflammation). Since it combines two things that I know work, I thought that perhaps this machine should work too. I'm not sold on this machine. First off, I don't want to spend well over $500 on it and second, my GP recommended that low level radiation from bad wiring in the walls (dirty electricity is one example) and emissions from electrical devices at home might be adding to my ill health.

The theory is that Lyme has completely screwed up my body that I have become over-sensitive to toxins &c. (this article on electromagnetic fields is very interesting) which are easily processed by a healthy body. Changing my diet and removing chemicals from my home are not enough to tip the balance back towards healthy, if I can detoxify my system and my environment enough, my GP suggests, it will then increase the success of my main course of therapy.

So, I felt that if I am suppose to be removing sources of electromagnetic fields and stuff, then should I buy a device that puts electricity into my feet?

This all need further research on my part; but, I did buy a new Netti pot . This is a device for cleaning out the sinuses and is really good for after I've been in a place with lots of chemicals. It also feels incredibly weird, but afterwords I can breath really well, so I guess the ends justify the means. I have a cheep plastic one already, but I hate the idea of evil plastic chemicals leaching out of the pot into my sinuses so now I have a porcelain one.

Who pays?

2008-11-17T12:32:00.000-08:00

I don't know if there is an active conspiracy that prevents Lyme patients in Canada and the USA from getting the care they require, or not. I can think up a good conspiracy theory better than most, but to me, this particular conspiracy seems implausible. The logistics alone would be huge.

That said, we have to fight for every drop of medicine and care we receive. Doctors that will treat Lyme, often have to do so secretly with the occasional back-room deal to make it work. People with Lyme are discriminated against on the basis of our illness.

My personal opinion: I think it is more a matter of poor education and resource management. It's the same reason why they opted not to cover dental work under the Canada Health Act. Did you know that bad teeth can kill you? Infection! An infection in the teeth or jaw can get into the rest of body, quite often the heart, and poof! No more you. (okay, it's a bit more painful and drawn out than that.) It's very expensive to cover dental health as part of the over all health of a person, but is it more expensive to treat complications that arise from not funding oral health?

The same thing with Lyme. It is expensive to treat Lyme. I know. I'm way over budget so far, and I'm just getting started. However, if I was an administrator or an insurance person, I would look at the numbers. People with chronic conditions, like Lyme, are more likely to have poor health in other areas. If treatment for the primary condition goes untreated, than they are more likely to end up in the ER for secondary complaints. The effects of the illness might just be more expensive than treating the primary condition. Didn't think of that, did they?

Conspiracy or not, these people are trying to save money. It's a shame they don't look at the numbers.

Here's what got me thinking about this.

Life after ... November?

2008-11-15T11:59:00.000-08:00

Here is an interesting link I've stumbled across this morning: Life After Lyme Disease. It looks to me to be the start of an informative and well researched blog. I plan to keep a close eye on this one.

In other news, still suffering from November blues. I'm tempted to declare this a Herx and just sleep through it, but I'm too stubborn to do so. Stupid stubborn me. Anyway, it's sunny today and a friend of mine has convinced me to leave the house and go knit. It's the first time out of the house in three days, so I think it's a good idea for me to get out and enjoy what's left of the good weather.

November

2008-11-13T16:04:00.000-08:00

I'm not really in a funk yet or in a full Herx (even though my body is trying to hint that one is coming), I'm just really tired.

I do about as good with November as I do with Tuesdays. That is to say they are both horrible. I don't know why, they just never go well for me.

I've been told, like so many other things in my life (Lyme, anyone?) that this is psychological and that a month isn't actually out to get me. But my conclusion that November is wrong for me comes from observation, not any actual month'ist bias. If anything major in my life is going to go wrong, it happens in November. Be it death, desertion, or the occasional dismemberment (okay, I sliced off a chunk of my thumb on a cheese grater), if it is life altering, it will happen in November. Not every November brings bad news, but if bad news is going to show up at my doorstep, it usually does so on a Tuesday in November.

Anyway, I don't know if it's because of the month or because of my Lyme but my insomnia is creeping back again. Or, perhaps it is because I am pushing myself too hard trying not to think about what month it is (and all the bad memories associated with it). You know how it is, or at least how it was before; if I keep busy and doing things, then I don't have to think about other things. I become so busy trying to be busy, that I forget to do all the important things. I know this pattern in my life and it always ends the same: badly.

I need to find some way to snap out of this cycle before my body gives out on me.

Under our Skin - Nov 15th, 2008, at Glenlyon Norfolk School

2008-11-13T09:22:00.000-08:00

Well, this is obviously the universe telling us to go see the film Under our Skin. I stopped by Bite Me, the blog of a young woman from Sooke who is suffering terribly from Lyme, and I saw that there will be a screening of Under our Skin at her old school.

The event is on November 15th, from 7:00 to 10:00 pm.
It takes place in Victoria, BC, Canada at
Glenlyon Norfolk School
801 Bank Street

Have a read of Bite Me for more info. Apparently it will be not just the showing of the film, but also an information night where Dr M., formerly the only physician in BC who was trained to treat Lyme, now retired, will be talking and answering questions about Lyme.

If you can't make it on the 19th, perhaps you can go see it this Saturday instead.

Under our Skin - Nov 19th, 2008 at Royal Roads

2008-11-13T09:00:00.000-08:00

A friend told me about another showing of the powerful film, Under our Skin. This one is a little closer to town and is showing at Royal Roads University.

Free Screening of the film, "Under Our Skin"
Royal Roads University Grant Building, Quarterdeck
2005 Sooke Road
Wednesday November 19, 7:00-9:30pm
Visit this page for more details

I wish I could say that I would see you there, but I won't be going for several reasons. First and foremost, being in crowds is still very difficult for me - too many scented people. I'm also not very good late in the day, as many of you will have already observed. Last, I'm still rather fragile emotionally and I just know that this film will have me in tears for days.

However, I urge you, if you can sneak away from life for a few hours, to go and see it. It is suppose to be absolutely wonderful for those who know nothing about Lyme, and for those of us who know too much. If you do go, please let me know what it was like.