Prior to Vol State, I packed up all of my meds, hydrocortisone, cytomel, T4, DHEA, florinef, vitamins, emergency injection kit and sodium supplements. Every time I pack this shit up, I get a little annoyed. Without it, I will die. Yeah that sucks. It's a "Why me?" thing at this point. When I get started with the race, I barely notice. I have the small bag of pills, I take them. Every night I get the new bag of pills out for the next day. Rinse, lather, repeat. Small glitch in this process. I packed 10 mg pills instead of my usual 20 mg pills. I packed all of the pills a week or two prior.
For those of you who don't know, I have adrenal insufficiency. My adrenal glands don't produce cortisol. If I don't take hydrocortisone daily, I will die.
In each and every one of my prior races, I've used 20 mg pills. I forgot that I had packed 10s instead. I thought they would be more convenient. I thought it would be easier. I thought I would remember that I had made this big change to my med routine. Day 1, I thought I was taking 5 mg of HC an hour. Day 2, I also thought I was taking 5 mg of HC an hour. By this time I was exhausted and nauseous as well as slightly delirious. I was laying in bed trying to sleep, contemplating taking more HC and possibly interfering with my sleep. I was holding the pill when I realized I was taking 10 mg pills not 20 so only HALF of what i needed sustained exercise. SON OF A BITCH. I immediately took more HC and Days 3-5, I took 10 mg of HC per hour to make up for the deficit.
What I quickly learned was the following:
- Taking less HC than needed contributes to extreme and inappropriate muscle fatigue
- Taking less HC than needed contributes no nausea
- Taking enough HC leads to a better disposition and less muscle soreness. I was rarely nauseous and I was actually even hungry
- Because the exercise was extreme and prolonged (compared to say, a marathon. I did 8 marathons in a row, slept odd hours and ate when I could which was not when I should have eaten) and I was taking 10 mg of HC per hour, I skipped my florinef and supplemented sodium lightly and as needed. I had much less edema during and especially after because of this. 20 mg of HC has the equivalent of .05 mcg of florinef. I was taking upward of 100 mg of HC per day.
- Taking upward of 100 mg of HC per day for 3 or 4 days did NOT result in over replacement. For the activity I was doing, this appeared to be the perfect amount of hydrocortisone for me. I was happy with how I felt on it. I had NO trouble sleeping, had a great appetite, lost weight (last year, I gained a few pounds and did 100 miles more)
At about mile 200, I was in pain and tired. The calf was starting to hurt. I looked at my pills, called my husband and had him evaluate my situation. "What if I stretched this race out to 9+ days? How many miles a day? How many more days?" (By this point, my brain was not working even though my stomach was so I had to have him work things out for me) He told me. I PANICKED. I didn't bring enough freaking hydrocortisone. This is the first time in my entire life that I was unprepared. On Scott's suggestion, I called my nurse who fabulously called a prescription in to Walmart. I think this might have been my lowest, most out of control point with AI in the nearly eleven years since diagnosis. I was so angry with myself. I'm usually very diligent about having pills stashed everywhere. During this very important trip, I had made two ridiculous rookie mistakes. Most people doing this race and just most people in general don't have to worry about, literally, keeping themselves alive. I was mad. I was resentful. I still am a little bit. Funny, I was not limited by my second mistake but it really irked me to be so stupid and put my health and life at risk because I was too dumb to bring enough HC.
As far as resentment goes, many people with AI get to this point immediately after diagnosis. It took me a long time. I guess I am a late bloomer! My next post will tell what I am doing with this resentment and how I'm going to make it work for me.
I'm going to quit whining now. I do think it's important for me to share my mistakes and frustrations. I tend not to complain publicly, giving other people with AI the false impression that I have nothing to complain about. I complain plenty, just not usually publicly.
