moving to a new blog

This blog has gotten pretty large, and is slow to publish, so I'm moving it to a new location:

Let's try http://nicolekumquat2.blogspot.com. I wanted to be more creative, but realized it will be easier to remember if I stick to the same theme.

Check that site for new postings.

Starting to feel discouraged

Yesterday I was pretty tired and rested a lot. I intended to work all day, but was unable to concentrate and had to work in fits. My energy level was up and down throughout the early part of the day, then took a dive after lunch and stayed low. I didn't have as much mucous in my head as the previous day, but I still wasn't feeling any better.

Today I woke up and felt ok, until about 10 after I'd been on the phone for an hour (I call in for meetings now). After the meeting, I got up to get some tea and had a head rush and felt woozy. I lay on my bed for about an hour, but didn't feel any better after that. Then I had to call in for my last meeting of the day, which is two hours long. I haven't had a headache in a while now, but I've been getting one for the last hour now. I took a migraine med, but so far no effect. I'm scheduled to give my presentation any minute now. I'm so discouraged. I really want to be able to do my job and continue to work as I have for the last 8 years, but I'm getting sick so often I just can't keep up. I'm constantly playing catch up and making excuses for being late on everything. I used to pride myself on planning well and being on time, not procrastinating or doing everything at the last minute. Lately I've been lucky if I'm not more than a week late. I'm starting to wonder if it's realistic to have a job at all until my health gets a little more consistent. It's really hard for me to admit this, because having a job is usually so fun for me, and it's always been important to me. But I am having trouble keeping up with the pace, and wonder if I need to take a break until I'm really back to health full time.

Not another sinus infection

Monday 1/28 Ugh... I woke up feeling a little tired and congested, but I have a lot of work to do for a presentation.
Tuesday 3/1 I am soooo exhausted!! I definitely have a sinus infection... I won't do into the disgusting details. I made soup and sipped it all day. I had to work, but by the evening I was totally wiped out, my brain was all foggy and I felt miserable. I spent the entire evening on the couch, taking vitamins and trying to converse with my daughter. I usually reserve the evening times to play with her, but I was so wiped out. Unfortunately, my husband was not around and couldn't help with dinner and her homework. I did my best and then took turns watching movies with her and reading to her. I feel like such an awful mother at times like this: I realize I have been sick for most of her life. I want to be healthy so I can play with her like she asks me to.
Wednesday 3/2 Decided to take the day off of work to try to recover. I really don't want to have to go on antibiotics again. That is part of the reason my health went south in the first place (the candida overgrowth, leaky gut, food allergies, etc etc). Went to see Dr. Buscher and he provided some glutathione (amino acids that help the immune system), stuff to support my liver during the detox, and tons of probiotics to help me get rid of the infection naturally. I've been resting on the couch, and today is definitely going better than yesterday, so I have hope. If I get over this without antibiotics, it will be the first time EVER for me.
Marc went to our general practitioner, and she said he had the worst sinus/ear infection she'd ever seen, and gave him antibiotics. He's been sick for the last few weeks, so it's no surprise that it is so bad. When I talked with Dr Buscher, I told him about wanting to get my daughter and Marc out of the antibiotic cycle as well, someday, after I've gotten my own health under control. He agreed it's good to focus on one thing at a time. I'd just like to have everyone in this house be healthy at the same time at least once this year!!!!

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.