Wednesday, May 5, 2010

There Is a God and Today I Am Not on Her Sh*t List

I heard back from the endocrinologist.

He got it.

He really got it.

My 10mg taper was too fast --which I had secretly worried about as well, but I trusted my pulmonologist. (Will have to re-evaluate that.)

Also, the self care I've been doing got his endorsement as being a Good Thing. So I will write up a post on that since there's not a ton of info out there for patients dealing with steroid withdrawal.

We are doing a 5mg x5 days, 4mg x5 days and 3mg x 5 days after which we'll stop and see how I feel.

I am being given prednisone and instructions to take it when I get sick to avoid 'crashing' in the future so I can stay out of ERs.

I need to get a medical ID tag (which I had one way back in 99 when this last happened, but I don't know where it went).

We'll do an adrenal challenge test (I think I have the terminology wrong on this so don't quote me) in 6 months.

I am also going to keep the appointment with the primary care doc today to be sure to document all this for the future. The more doctors who know this about my health, the better.

Too bad I went through 2 weeks of hell to get this far though.

Once again, as a patient, I pretty much did all the right things, but the doctors did not listen, did not act, did not Get It. How does that happen? Repeatedly?

Note to the ER docs of the world: This medical stupidity is precisely why I may not be willing to take steroids. Asthma is easier than this. Much easier because not only am I incapacitated physically, I am stuck on a merry-go-round, spinning in circles trying to find a competent doctor who knows how to deal with the side effects of prednisone.

It took 4 physicians to get proper care. I ASKED about steroid withdrawal in the ER and was ignored. I EXPLAINED my symptoms were similar to the last time I had adrenal suppression and was told they were in no way adrenal in origin. I ASKED for help and it was denied me time and again. EVERYONE had access to my previous history with adrenal suppression--the ER looked it up in front of me and it STILL did not compute. Frankly, I would rather not be able to breathe.

1 comment:

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: