Wednesday, May 5, 2010

Member of the 1% Club Several Times Over --Where's My Prize?

Saw the primary doc. They are listening. I can see the wheels turning and I think I'm being taken seriously.

They asked if I'm exercising. Everyone asks this. Somehow my description of the fatigue tends not to compute the first time around.

I snorted at the question. "This is it. This appointment is ALL I will do today. From here it's all nap and resting. I haven't exercised in 2+ weeks."

Although I did end up taking the toddler out for a burger and to the playground. It about killed me, but I am committed to not sucking the life out of my daughter's childhood. Then I came home and threw out more food I am too tired to cook and the hubby brought home take out. Again. After which, I took a loooooong nap.

The other exchange, has me kind of kicking myself. Look, I have read and read and read EVERYTHING I can find on adrenal crap. Studies.Textbooks. Patient experiences.

EVERYTHING. I am the Queen of Adrenal Factoids at this point. Where do I audition for Jeopardy: The Patient Edition?

When the primary doc was confuzzled on why I would be prescribed prednisone as it doesn't contain the mineralocorticoids (hope I spelled that right), without thinking, I blurted out 'This is probably secondary adrenal insufficiency.' *face palm*

See, you don't need the mineralocorticoids if it's secondary adrenal insufficiency because, supposedly that capability is still intact in the adrenal glands. (On a side note, I also read that because of this it would be very very rare to have an acute adrenal crisis, but I would like to see more than one source on that before I take it as gospel.)

(And of course being a lowly stoopid patient, I could have all this wrong.)

I liked that they questioned it. That they were thinking primary adrenal insufficiency, because I do think I need some testing--whether it's damage from sustained prednisone use from the ages of 15 through 30, or the fact that the first time my adernals tanked it went undiagnosed or other high medical weirdness, something certainly seems off. The endo is planning to do that testing as far as I understand.

Anyway, I wanted to kick myself for saying anything at all. Fortunately, I don't think they took it the wrong way. They actually apologized for me having to go through all of this, which was a real kindness, I thought. I really appreciated it because my life has SUCKED lately--the bright spots have been hard to find. They also said I am that 1% who has issues with suppression.

As if I've never been an outlier before. Puhleeze. As far as outliers go, my health is a total 'slore'* I should get 1% tattooed somewhere. Maybe even trademark it as my brand. It seems to be my personal percentage.

The goal at this point is to get the primary doc all copies of all paperwork--past, present, future--related to the adrenal stuff. I am all for that. The more doctors who know this about me, the better. I am learning the painful lesson of having just ONE doctor know serious medical stuff about me. When they left town, I was left high and dry.

I won't make that mistake again.

*Slore = slut + whore. Courtesy of Olympic skater Johnny whatshisname who recently described Olympic gold medalist Evan whatshisname thusly. The word has since stuck in my brain.

1 comment:

  1. Hi, Just found your blog on chronic babe. I don't know how I've overlooked it or missed it for all this time. I am secondary Addison's and it sucks. Secondary to pituitary failure, probably because I was using steroid nasal spray when I didn't even need it, Docs couldn't figure out what was wrong with me, or just didn't care, and figured it was allergies...thus the nasal spray.

    You made me laugh with the Jeopardy reference. Once a category was "Autoimmune disease" Guess what....I got every one of them right!

    Good to find you, talk to you soon.
    MO

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/