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.


HollyM said...

I've been diagnosed for several years now along with hypothyroidism. I am not the same person I used to be and still regularly get moments of resentment. I know I'm still a lucky person and I don't let it stop me, I use as fuel I guess, but I still get it.

Unknown said...

OMG....Had no idea you went thru this on top of all the calf pain. You are so TOUGH and smart enough to get yourself out of trouble! You also won't ever not have enough HC with you. So happy you survived to run another day!

Di said...

I don't know how to phrase this in a way that doesn't make it sound like I'm glad you feel shitty, but it's reassuring to know that even people who seem to have it together sometimes mess up and get angry at the world. I'm sorry it happened, but I'm glad you shared your mistakes and frustrations, even if you don't like to vent in public.

Can't wait for your next post. I've been dealing with a lot of anger and resentment lately, and I'd love to see how you're working through it. Like you, I feel like my resentment was delayed a bit. I was first diagnosed with Graves' over 13 years ago, and I was diagnosed with AI probably 3-4 years ago. Not sure why the anger is hitting me all of a sudden.

Unknown said...

Don't beat yourself up over this mistake, Dusty. It happens to everyone who takes any medication sooner or later. And it OFTEN happens during a change in routine like travel. At least that's what the ER doc in Fairbanks, Alaska, told me when I was there in 2005 when I NEGLECTED TO PACK MY FRIGGIN' FLUDRO for a three-week trip into the Alaskan wilderness. When I wrote about this "stupidest thing I've ever done" in the Central Ohio Addison's Support Group (COAST) News, I heard from people all over the globe, telling me similar travel stories. You had the added challenge of running two marathons a day!!

So, my friend, thank you for sharing your story, and your feelings, with all of us who have - or will - make errors with meds or be angry about AI. It's nice to know we're not alone.

Unknown said...

Holly-go get 'em! I'm glad you get it!

Wanda-you didn't know because I didn't tell anyone :)

Di-I totally get what you are saying and you got my intent of my post. Sorry you're going through a similar thing.

Heather-thank you for understanding! You are totally right, we are not alone!

Anonymous said...

Dusty- you are such an inspiration- I am having surgery to remove my adrenal glands (I have cushings disease and they are unable to cure my tumor) so I will be left addisonian. I am okay with that but I worry everyday what life will be like. I am an international flight attendant and train wild horses on the side.. It is so awesome to see what amazing things you are doing with ai. I'm going to go sign up for a tri now. :) you give me hope!