More health notes

Guys - close your eyes or skip to the next paragraph. Yesterday was the first period I've had in over a year where I didn't have any early warning signs - no moodiness, or low back pain. I just started with no forewarning. It was excellent. The last few periods, I've had severe back pain and 2-day migraines. This time I have no symptoms except a mild soreness in my lower back. Is this going to be what it's like after cleaning up my lifestyle and environment? I hope so!!I slept a little longer last night (normal while I'm menstruating, but otherwise my energy levels have come up since friday afternoon and I'm feeling well. I'm planning to go on a bike ride after lunch.

(later) The bike ride was excellent - I actually went 8 miles!! I felt fine afterwards, but later that evening, I started feeling tired. I wonder if I'm catching my husband's sinus infection?

I worked a little in the morning and evening, because I have an important presentation on monday and friday. Work is requiring a lot of concentration these days, so it's good my health is mostly better these days.

...everyone has some degree of chemical sensitivity

A friend of mine told me she thought chemical injuries and sensitivities were far more common than other people realized. While she doesn't have claim to have MCS, she is also particular about avoiding scented products in her home and environment. She said, "Among other things, I've been thinking about MCS a lot recently, and I have a fair hunch that these chemical injuries very common. The extreme ones get misdiagnosed, and the minor ones make people miserable withoutactually debilitating them. In any case, I think the impact is huge, and more awareness will happen when more people realize why they are suffering."
I wasn't aware of how common it was until I realized I have this problem too. Now that my eyes are open to it, I can see it all around me: every day I interact with another person who describes sensitivies (though never admitting to it actually being the cause of any of their illness). Nearly all women I talk to mention some product that causes them some health issue. Yesterday in the health food store the woman working behind the counter mentioned she has a lot of problems with smells too - she said dryer sheets make her nauseated and she can't stand being around the smell. A woman in the sauna told me she gets headaches around perfumes, and other scented products. One of my close friends mentioned being unable to tolerate most tissue products because of rashes.
I didn't know about this till this January, and now I am putting together things I've heard people say for years...all things which I now realize are symptoms of chemical injury. I remember my own mother telling me that she couldn't go into fabric stores without getting congested and tired (fabric off-gasses formaldehyde). I am a little amazed at how ubiquitous chemical exposure and injury is, yet nobody is really aware of it. I can see that changing public opinion and awareness is the hugest challenge. But I think it's inevitable that public opinion will change, since the rate at which people are getting exposed is increasing, though it might still take another 10 years before the people really accept it as an issue in their own lives. Right now, nobody knows the symptoms, and the urge to stay unaware is huge...who wants to face the ugly reality? I sure didn't want to believe I was getting sick from the things around me; I didn't want to stay away from my friends homes, or work from home, or wear a mask when I pump gas. I just kept getting sicker and sicker for years, always looking for a simple medical solution (blood test after blood test!).

After all, everyone has some degree of sensitivity to toxic chemicals...that's why they're considered toxic.

I have the best friends ever!

On Saturday I had lunch with friends, then we came back to my house and watched the movie "Safe", which is a 1995 movie about woman with MCS. I have the best friends ever - just to visit me they had to make sure they washed their hair and clothes with unscented products . I got email the night before from one saying she'd just started her load of baking soda laundry (baking soda works just as well as detergents, and has NO toxic side effects). It reminded me of how much extra work it was for everyone else. I've had months of making changes to my lifestyle; they had to figure it all out quickly. So much extra effort - but they did it! It was great to hang out again.
The movie was not quite so exciting or interesting. It was depressingly ambiguous about whether MCS was a physical or mental disease. It accurately portrayed (accurate enough for hollywood, anyway) the symptoms of having mcs attacks, and it lambasted doctors, psychologists, and alternative therapists equally (somewhat unfairly on all counts, I thought). The main character was so lacking in personal confidence and assertiveness that it was hard to empathize with her about the disease. The movie seemed to focus more on her mental issues at the end, than her physical issues, which was disappointing.

After everyone left, my husband and I finished sifting dirt for our garden. Actually, my husband did most of the work (he worked through lunch and the movie), but I enjoyed my part. It was simple mindless work that felt good!

Last night before bed I took a hot ginger bath, as hot as I could stand. Hot baths are supposed to help with detox, and they feel great. Woke up at 6:40 this morning, with tons of energy!!! Yay! I feel awesome.
... I wrote that this morning. Since then my energy has changed a bit: I went in to work to give a presentation. I've been avoiding going in. I went a little early to do some stuff in my office and print handouts. I wore my face mask up until I had to talk, and didn't notice any symptoms or reaction. Unfortunately, I had to take the mask off to talk, and by the question and answer period I could feel a headache starting, my jaw was really tight, and my cheeks were flushed. By the time I left work, the lymph nodes in my neck were all swollen and my nose was stuffy. All told, I was probably in the building 2 hours, one hour without the mask. Sigh. I took lots of B complex and vit C. It took about 3 hours before the symptoms started going away. It's 5 hours later now, and I'm still feeling pretty wiped out.On the positive side, I wasn't sure how comfortable I would be wearing the mask in public, especially around people at work, but it turned out ok. One person did a double take and said "Oh my" (and so I explained I had chemical allergies and had to wear a mask), and one other kind person asked me how I was doing and we chatted for a while, but other than that no one said anything. So now if I have to pick up anything from the building, as long as I don't have to take the mask off and the visit isn't for too long (I'm thinking 30 min to an hour tops) - then I'll probably be ok.

On chinese IQ tests and neurogastroenterology...

Learned a new phrase from a friend. Warning: this is technically unPC, so I'll say up front that I don't intend a slight to any culture, especially the chinese culture which I esteem. The phrase is "Chinese IQ test". As my friend tells it, the chinese grad students that she worked with in the physics department would ask if something was a Chinese IQ test if it was something whose solution seemed obvious, but could be screwed up in some dumb way or if the solution was actually more subtle. Apparently, her chinese collegues said their IQ tests had questions that were ambiguous, insanely hard, unclear, or appeared to be obvious and turned out to be impossible for some subtle reason. Hence, the phrase. My friend gave an example of it in use: "one time a bunch (literally four) of us were trying to open a cole slaw container at a surface science seminar lunch without actually breaking it. When the fourth person tried and failed, someone asked about if it was Chinese IQ test." I love this phrase! It captures that "am I missing something obvious?" feeling.
Speaking of brains, today I read about the brain in our gut and about the neurogastroenterologists (guys that study it). Very cool stuff! I don't remember learning in school that we have a brain in our gut, and that it has over one hundred million neurons. This boggles my mind. The brain in my head has about 100 billion brain cells - which means my gut is 0.1% as smart as my head. Put that way, it might not seem like much, that is a pretty impressive amount of brain power. Super cool. Our two brains communicate via the vagus nerve. There is interesting internet reading on the topic - see http://www.hosppract.com/issues/1999/07/gershon.htm for the web page of a researcher whose passion in the gut-brain, or http://serendip.brynmawr.edu/biology/b103/f00/web2/partner2.html for a simpler summary.
Energy, enthusiasm, etc all excellent today. Didn't exercise or otherwise participate in gainful activity other than work and a sauna. Pleasant day!

Surprising and encouraging discovery

For the last week I thought I was taking half a 5 mg pill and 2 1 mg pills. This morning, when I was splitting my prednisone pills to give my a reduced dose, I discovered that the pills that I thought were 5mg pills were actually one mg pills. So instead of taking 4.5mg prednisone for the last week, I've been taking 2.5 mg. This is good news (of a sort), in that I've successfully adjusted to a much lower dose than I thought. Yay! It's bad news because I was supposed to decrease the dose more slowly (boo!). Oh well - since I've made it here successfully, I'll stay at this does for the rest of the month, then continue to decrease. I am encouraged to think I'm doing so well on half my former dose.

Yesterday went well. I didn't have any flu-like or cold symptoms. I worked well all day, then took a break and, instead of going to the sauna, decided to RIDE MY BIKE for 20 minutes. It was sunny and it felt great to get out. I stayed on the neighborhood streets because the car exhaust smells are so strong on the arterials. I didn't ride fast, but it felt good to explore. I've been in this neighborhood over a year and this is only the second time I've gone out on bike.

I think I'll wait a few more days before starting the detox, make sure I'm really feeling strong. I may start exercising again before I go back on the program. I need to keep my right shoulder muscles strong, since I'll be having surgery on my shoulder Mar 11 to remove the screw which is holding my collar bone to my acromion.

Just another day

Since I took the migraine medicine yesterday morning, I've been feeling fine. I stopped taking the Mediclear per my doctors orders. I still have a bit of sniffle and feel a little run down, but nothing major.

I have a demo at work that I am giving next monday, and since time is passing quickly, I spent all of yesterday and today focusing hard on getting everything working and building the power point. I'm grateful that once the pain stopped, I haven't had any problems thinking and things are progressing fairly well. The nice thing is that I slept through the night last night - bonus! No 2 am wake up session.

I haven't exercised since last thursday... I suppose that will have to wait a few more days, to make sure I'm over the cold/detox and don't develop a sinus infection. For the record, my body seems to have adjusted fine to the lower dose of prednisone. I'm no longer groggy at all in the mornings. Per my endocrinologist's orders, I'll stay on this dose for a month, then drop another 0.5 mg.

Today I worked on my program and slides until I was pretty tired this evening, then sat in the sauna for an extra long time. I love the sauna: it is so peaceful to lie around in the warm dry air.

Other than that, nothing new to report: just another day.

Like the energizer bunny...the headache keeps going

Sunday was just as utterly utterly utterly miserable as saturday. The migraine medicine wore off after about 3 hours, and the headache was back. I didn't even notice if I had a cold; all I could feel is my head. I don't remember what I did all day. Even icepacks and hot baths weren't helpful. I gave in around 8 and took another migraine pill. This one lasted long enough for me to relax for an hour and fall asleep. I slept till 1:30 am, then the pain was back. Managed to fall asleep again, but woke up in moderate pain. After my mediclear breakfast, the pain started escalating again, until I was pretty sure I was going to lose breakfast. I took another migraine medicine, but this didn't seem to help. Marc suggested going for a walk (I was pacing around the kitchen crying), so we went out into the cold air. I actually started feeling better, and after about 10 minutes of very slow walking, the migraine started letting up. That made me decide to air out my house, so I opened up all the windows and put on extra layers. Once the medicine had fully kicked in, I was able to focus on work again and sat down at the computer to code, all bundled up. It was such a relief to be able to look at something without pain again.
I called the doctor for advice - should I quit the detox program, or can I continue taking the frova/maxalt migraine meds? The doctor told me to stop the detox program until my symptoms are entirely gone, then start up again at half the normal start up dose. He said migraines are common when the body has a lot of toxins to dump.
Now that my headache is gone, I've been sneezing all day, so I'm thinking I have been having both a cold and a detox reaction. No wonder my body was so miserable! I'm relieved to have a slower detox plan.

Run over by a train

Here's a few days blogs - when you read them, you'll understand why I didn't post them earlier.

Feb 18 - Evening
Later this evening I took some niacin and went to the sauna. I had read that niacin causes a "niacin flush" - an opening up of the capillaries, and a release of histamine, which causes the skin to flush. It's supposed to be quite good for detox. I was utterly unprepared for what happened to me. Within 15 minutes of taking the niacin, just as I was about to go into the sauna, my skin suddenly started tingling in a painful way,and I felt very warm. I checked myself in the mirror and I had turned bright cherry red, from feet to head. It was a little scary. I'd gone from seattle-white to lobster in less than 3 minutes. Instead of going into the sauna, I lay down on one of the comfy chairs in the ladies dressing area, and sat quietly waiting for the effect to go away. I was a startled and a little scared at first, but I realized that although my skin felt completely wierd...like I had run naked through nettles...the rest of me felt fine: normal pulse, breathing, thinking... so I knew I just had to drink lots of water, rest and wait the effect out. It took about 30 minutes before the tingling sensation left, and another hour before I stopped looking like a cherry tomato. I'd read that you should start at 100mg, then slowly build up till you can tolerate larger doses (up to 2000 mg). I thought I'd bought 100mg dose pills, but later when I checked the bottle it was 250mg - so that is part of the reason the reaction was so violent. The whole process is supposed to shake toxins loose from fat cells that usually don't get a lot of blood flow.

By Friday evening I had started feeling really tired, like I have a cold coming on. Marc said he felt the same way, so we sat on the couch all evening and watched movies.

Feb 19 - Saturday
I've been run over by a train. I don't know whether I have a bad cold, am having a huge detox reaction, or am in the middle of my worst candida herxheimer reaction ever. My head hurts, my nose tickles, my throat is sore, I feel hot and cold (pretty much at the same time), and I ache all over. My shoulders and back of my neck ache the most. I woke up at 2:30 last night in so much pain and so achy that I got up and curled in a ball on the couch for an hour drinking vit c water.
Yesterday I started the detox program, so it's possible that that, in combination with the caprylic acid I took yesterday, is causing a massive yeast die-off, but somehow, I don't think so. Or it could be that the niacin flushed a lot of toxins into my bloodstream, and my liver is trying to deal with that. I'm suspecting this time it's just an old-fashioned virus, since Marc was complaining of a cold yesterday. Time will tell. A yeast die-off or a detox reaction will only last for a day or two (unless I do more things to cause more die-off), while the cold will have symptoms for 4 or 5 days.

Within a few hours it's gotten worse. I am sooo sick. This is far harsher than any cold I've ever had before. I ache all over, and it hurts so bad. It's been getting worse and worse since 2 am this morning. It's noon now, and I hurt...

Feb 20 - Sunday morning
The pain kept getting worse all day saturday. My whole body felt achy, my nose kept dripping, I was sneezing, my neck hurt, my body ached. I was in so much pain I couldn't tell if I also had a migraine. By the evening, I was rolling around on the floor because I hurt so much. Watched TV all day; was unable to do anything else.
Fortunately, I was able to fall asleep around 11, by putting an icepack on my head. It's hard to sleep when you are in pain, but I managed to stay asleep until 2 am. There is some bad magic that happens at 2 am which causes me to wake up with renewed pain. My nose was clear, and nothing else in my body hurt except my head..but my head was still pounding. I got a fresh icepack and was able to fall back asleep until 7 am on Sunday. By 7 am, most of the aches and pains were gone, but I still had a nauseating headache, so I gave in an took a migraine medicine (maxalt). Maxalt usually calms the nerves in my head. After about 30 minutes, the migraine pain was much less, so now I think it's time for breakfast.

This really doesn't seem like a standard cold.

Time goes sooooo sloooowly...

….when you have a kitchen timer on your desk ticking the seconds.
I’m supposed to collect saliva samples 3 times this morning, one hour apart, and I'm not allowed to eat anything in between. I’ve got the kitchen timer sitting here to remind me not to snack, and to tell me when to collect the saliva. I want to make each collection as quickly as possible so I’ll be able to eat lunch by 11:30. Sheesh. For the last 2 weeks I’ve had to make various diet adjustments for tests (for the current test, I’ve had to avoid taking any medicine or supplements for 7 days, except for my prednisone. Last time I couldn’t take any vitamin supplements or extra fiber etc… I feel like such a guinea pig).
This morning I woke up with gunk in my eyes and pretty tired. I noticed that before bed last night my legs were twitching a little. Since I woke up a little congested too, I did a neti nose rinse (if you don't know, don't ask). This tiredness is wearing off quickly, and is only a small set-back from how I started the day yesteray. I'm excited, becaus as soon as this test is over, I'm going to add some of the vitamins back to my diet. The B & C vitamins in particular seem to help with my energy throughout the day, plus I'd been taking lots of Mg to get rid of my twitchy legs. For the last year or two, my legs would twitch (jerk and spasm) while I sleep. I only know about it because my husband complains, and sometimes it happens as I'm lying in bed trying to fall asleep. I generally feel extra tired in the morning on those occasions. In any case, my doctor suggested taking large doses of Mg every day, and sure enough, that stopped the twitching. I've recently read somewhere that people with MCS often have a magnesium deficiency, and something about how magnesium is key to removing toxins from the body/brain. Who knows if that's related to my twitchy legs. Anyway, the magnesium does seem to help.
Well, back to work.
....tick tick tick...

One small step for man

Today, after a shopping trip to PCC to buy organic foods and vegetables, I returned the shopping cart to the line of carts by the store...and as I was walking back to the car, I realized that this was the FIRST TIME I HAVE DONE THIS in almost 4 years. For the last 4 years, I was so tired after shopping that all I wanted to do was get home so I could lay down. I used to watch the people hired to bring the long line of carts back to the store with gratitude, knowing that I always used to do it myself, but so glad they were there to pick up the slack when I didn't have the energy. And today, I returned the cart without even thinking about it! Yay!
I'm having so much more energy these days, I find myself running UP STAIRS or jogging to get the mail. Getting the mail is also something I hadn't done for years. In my apartment building, I used to drive the half block to get my mail, because I was so exhausted - even on Saturdays. Wow, when I think of these things I see how far I have come. Sure, last year was the lowest point of all for my health, but in the past 2 months I've already climbed back so far up its amazing. All this improvement from avoiding certain places and smells, and from being very careful about my diet. Some keys changes to my lifestyle, and it's a giant leap forward for Nicole...

Dealing with being a freak

So I'm feeling kind of pissed of at the moment. I don't want to be ultra-sensitive to chemicals! I want to be normal, like I used to be. I just met with a developer from my group to collaborate on a project. We had to meet in the cafeteria because I get sick when I'm in any of the main buildings at work. So far, the cafeteria is the only work building that I am safe in. The conversation went well, but an hour into the discussion I started feeling sick and congested, and I could smell the laundry detergent on his clothes very strongly. The longer I sat there, the stronger the smell got, and the harder it got to think. I made an excuse and ended our meeting after an hour and a half. Overall, it was a productive conversation, but it is so hard to work when I have MCS! It just adds so many more complications!! I can't go to my office, I can't attend meetings except by phone... it's such a pain.
Ok, I'm done with my rant. The truth is, I know I'm so lucky to work for a company that will allow me to work for home, and I'm so lucky that my MCS hasn't caused permanent damage to my body, and I'm so lucky that I can still work when most people with this condition can't. I have a great job and a nice home and a beautiful daughter. When I look at the big picture, I realize I still have so many things that are working out for me. Dealing with MCS is just adjusting to a new set of limitations, and learning how to live with them.
A note about reducing the prednisone dose: so far, my energy has stayed good, even though I'm on day 3 of taking the reduced dose. This morning I felt the effects of it for the first time - it was hard to get out of bed despite adequate rest (10 hours!). I'll give this three more days to see if my body adjusts. I think it can.

a little bit on adrenal hormones

Woke up at 7:30 feeling a little tired around the eyes, but definitely ready to get up. So here I am, 7:36, typing in my health log. Yesterday I decided I was ready to start reducing my intake of cortisol (in the form of prednisone). I'm currently taking 5 mg per day (along with 5 mg of pregnenolone and 15mg of DHEA, to make up for the lack of production by my adrenal glands). Yesterday I only took 4.5mg, and today I'm doing the same. So far, no bad effects - no depression, extreme tiredness, irritability, hypoglycemia. My endocrinologist says it is very important to come off this slowly, about 0.5 mg reduction per month. The important thing is to not confuse my hypothalamus or pituitary glands, which are responsible for regulating the cortisol levels in the blood. For example, normally when blood sugar drops, you start exercising, or something stressfull happens, the pituitary gland notices this and tells the hypothalamus to send out a messenger (ACTH). This messenger tells the adrenal glads to get busy creating cortisol. Cortisol is used all over the body. In any case, one of cortisol's functions is to help the cells increase blood sugar production. I've read that if you adjust adrenal levels drastically too many times through drugs, then your pituitary gland can lose some of it's ability to self-regulate. I'm oversimplifying a bit here, but you get the idea.
For a nice description on how the adrenal glands affect hypoglycemia, read http://www.adrenalfatigue.org/hypoglycemia.php.

I suppose I'd better make the standard disclaimer at this point: I'm not a doctor (well, not a medical doctor), so I don't intend anything on this page to replace the recommendations of a doctor and naturopath. (I've become a fan of naturopathy in the last few years since they treat the whole body/all symptoms rather than looking at a patient piecemeal... but don't get me wrong, we need western medicine too. Knowledge is power. More knowledge is more power).

Funny how the mind focuses on trivial things...

I just read that the main area on your skin where toxins are expelled is the upper chest and the back of the neck. That really struck a chord with me because, since I started the detoxification routine to help my liver process the poisons in my body faster, I've had tooooons of acne on my upper chest, shoulders, and back of neck. I've never had acne there before and it is driving me crazy! Every night now the area itches too. I've starting feeling embarrassed to wear any shirt other than a turtleneck! I hope this means that, once my body has finished processing out the worst of whatever toxins I have picked up, my skin will go back to normal.

Funny that I worry about this little thing... when so many other things in my life much more important have changed, like not being able to visit my family or friends, or go to parties or bars, or eat wheat, icecream, cookies, corn, potatoes, tomatoes... etc. Somehow, the thing that's on my mind the most is all this crazy acne. Sigh.

On a positive note, my energy has been sooo good for the last month, ever since I've cleared all the offending chemicals out of my house, changed my hair and laundry products, and avoided all places that smell bad (in other words, I've pretty much spent the month in my house or yard). I've gone from sleeping 12 hours a day to sleeping 8 - 9 hours a day, and from no exercise to 40 minutes on the treadmill (and I even feel energized when I finish!). I'm running up the stairs now instead of plodding, and I helped Marc sift dirt in the garden on Sunday (wearing my mask to protect against molds) - the first physical labor I've done in over a year! So, I have to admit that despite the many pleasures that have been removed from my life, some things are just getting better and better now that I have a diagnosis and a plan to avoid the things that make me sick.

A short synopsis...the beginning to the present

I've been putting this off because I wanted to have a plan, but sometimes, the only way to start something is to jump right in.
So here it goes:
For the last 5 years, I have been getting sicker and sicker. It started out with migraines (I never used to have headaches), I developed food sensitivites, then my yearly sinus infection became an all-winter sinus infection, and somehow I kept getting cold after cold, all year long. Finally last year in April, on month two of the latest sinus infection, I collapsed while walking with by fiancee. Even though I rested on the couch for days, I just never had enough energy to get up. I won't go into details now, but at the peak of the summer, I was seeing 11 specialists trying to figure out what was wrong. None of the tests showed anything wrong with me - no allergies, no diseases, all of the tests said I was normal.
Eventually my naturopath put me on an adrenal hormone as a stop-gap, which gave me enough energy to move around, and even though my endocrinologist couldn't find anything really wrong in my bloodwork, he prescribed a continuing dose so I could function. But we still didn't have a clue about what was making me so tired. I knew something was wrong - I had not been a sick child - why was I constantly sick? What was going on? Would I ever be able to get back to work?
Finally On January 1 of this year, I got an answer. I have a poorly-understood condition called Environmental Illness (EI), and now that I've had a whole 1.5 months to learn about it, I realize I want to share my experience with other people so other people don't end up in my situation. I've learned that over-exposure to the many chemicals in my environment - my hair products, the xerox machine down the hall, my carpets, dryer sheets, laundry detergent, perfumes...and a host of other products - has caused a reaction in my body that is not fully reversible.
By cleaning my environment of the products that were making me sick, I can -and am - getting healthy again. On the other hand, I'll never be able to spend much time in an environment with these chemicals again without having a serious reaction to the chemicals in the air. In short, I've learned that my life will never be the same again. The amazing thing is, I'm learning that compared to many other people with this condition, I'm one of the lucky ones because I've found a diagnosis before EI lead to major damage to my organs, or even more damage to my immune system.
That's the short version. I plan to add more to this blog as I learn more about this condition. I'm still in such a learning mode right now... I know there are other people out there with this condition, and eventually I'll find someone who can share their experience with me.