Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Friday, August 9, 2013

RANT: Meds and resentment

For the first time in the eleven years since my adrenal insufficiency was treated, I was resentful.  This was during Vol State.  As a matter of fact, it was the day before I quit.  I digress.

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)
Here's the resentment part...
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.
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