Saturday, October 9, 2010

Quitting Birthdays and the Hidden Family History of Adrenal Weirdness

I did it! I pulled off the birthday party, with a ton of help from the hubby (who ROCKS). The toddler was soooooooooo happy.

After it was all over, she said, "Mommy, can I have my birthday back?"

I didn't share with her that Daddy and I were resolved to quit birthdays. We are both so over the hassle of cooking and cleaning for a crowd every year amidst the sick.

Next year, we are thinking of going to a restaurant and just buying everyone ice cream sundaes.

It would be cheaper, not to mention less stressful. Even with me cooking (in years past we had most of the menu catered) it was more expensive than we anticipated (we are on a big frugalizing kick), but everyone had a good time. The presents were legion. The toddler was adorbs. I ate my weight in empty carbs. Now I can finally rest.

My aunt came as well and we spent some time trading medical war stories.

I am trying not to think about what it means that I am able to hold my own in medical ailment conversations with the 60 something demographic.

Probably nothing good.

Anyway, my grandfather was mentally ill. Seriously bonkers. He was institutionalized a few times.

Apparently, at one point, during one of his court ordered stints at a mental hospital,his tests came back showing no cortisol production.

But that is all we know. We don't know if it was related to his brand of crazy. If it was related to the slow growing brain tumor that eventually killed him at 83. If it was a drug side effect. Or if he had some kind of hormonal problem on top of the crazy.

I will say the guy was always tan, but, then again, untreated Addison's is really not synonymous with a long life span.

Soooooooo frustrating to not know. I have no way to find out either. This was all back in the 1970s and the mental hospital has since shut down. Where would I even start to try and find the medical records?

My aunt also encouraged me to find better doctors. She suggested Mayo Clinic or something like that. The support was very nice, more than I usually get from people.

But it is very easy to talk about finding better doctors, another thing to actually do it. When she pressed me about what I was going to do next, I told her "coast." I mean; I have some ideas that I would like to pursue and some pending to-dos, but I kind of just want to set aside the quest for the medical holy grail for a while. Focus on weaning, see if I can actually wean even and go from there.

That's what is in front of me right now; weaning. I need to know if my body can do it. Yeah, I know I was talking big about seeing another endocrinologist, and I took a stab at it and met a brick wall reinforced with titanium rods. It is a temporary dead end and I have a plan, but it is on the back burner for now.

So weaning it is.

Still, it is not lost on me that I'm not quite the typical SAI patient and this is why my grandfather's history nags at me. Most people recover pretty quickly and don't need the years of recovery it takes me. Sometimes I think about all the things the pituitary does and how so few of them go well in my body. How thyroid and adrenal stuff are codependent.

Given that I can't even get buy in on adrenal suppression despite a well documented history of it, I am not holding my breath that a doctor will ever let my medical history niggle at their brain like it does mine.

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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/