Thursday, June 16, 2011

Three Quick Hits

1. The toddler fell down the stairs and had a leg collapse while standing after the EI assessment. I should have known it was coming as muscle fatigue is a trigger, however, I flaked and forgot to watch her on the steps. Thankfully it was not a serious fall. I am annoyed that this 360 view is absent from the EI assessment.

(Also, I'm laughing remembering how they said any OT would be 'short term' which I don't think they realize it took a year to see some progress in PT--some as in we have more work to do because there are still deficits. I have the feeling they think if they just let her run with scissors she'll be fine, their naivete makes me giggle.)

She also had a big tantrum at her PT session and ended up throwing her shoes at the PT (who is the sweetest most lovely person). She was hot. She was tired. Her feet hurt from all the PT and she couldn't articulate it.

She felt terrible about it and sobbed all the way home. We are working on a way to make amends with the PT (who completely understands, but I don't want the lesson to pass the toddler by, you fix what you break).

2. I have stopped taking steroids. It could've gone either way and, in fact, when I listed the pros and cons, the up dose column kind of won. However, updosing wasn't much help last week so I stopped taking steroids instead.

While it's too early to claim victory, I think it's going to be okay. (Don't worry, I will still whine for weeks about withdrawal/insufficiency symptoms.)

I have an endo appt coming up and plan to do an am cortisol draw the same day just to be safe. I think we now begin to move into the next phase of this mess...

-Re-enter standing orders for more cortisol tests on the off chance I tank again. The fact continues to be, I had weaned and exercise brought me low. It's not enough to be off steroids, I need to be off them and exercising and working and parenting with impunity. The goal is a life, anything less is a failure.

-Writing a note to the pulmonologist who believes none of this is adrenal with an 'is to' message and instructions on how to taper steroids in the future.

-What other protections can be invoked? If I can't put some protections in place, there is nothing to stop this from happening again. It needs to not happen again. Really there's no excuse. If it's not a known, documented problem by now, there's no hope for medicine and only despair for patients.

3.My PCP still has not called me back re: the gut. Bwahahahaha. Isn't it amazing how this stuff happens and happens and happens? I'll give it another day before I bug them.

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