It Just Is. 

I haven’t had much to write lately. Lots of feelings that just aren’t going into words very well. Some not so wonderful life stuff happening. I try reminding myself that my family and I are not getting our heads chopped off but that doesn’t make the hurt feel any better or less overwhelming.

As far as the usual medical type stuff updates… May have a cracked tooth. The “no-big-deal” thing they removed from my gums was some freak show “ossifying fibroma.” The dentist was fascinated because she never sees those. Oh, good. I’ve had a disgusting infected toe for two weeks. It was like a black/purple color for a few days but we seem to have turned down the yellow brick road with that sucker. Also had an ACTH stimulation test last week to check my adrenals/pituitary/whatever function. No results yet – a normal person assumes this is good. Me? I just bypass the doctor and go get my own records.   

But here’s the GOOD NEWS: I do not have Dysautonomia. Yeah. I DO have POTS, which is a form of Dysautonomia, but I repeat – I do not have Dysautonomia. Dafuq?! <~~ (I see that on the interwebs a lot, I’ve always wanted to use it) ————————————————————————————————————————————- I was giving you a moment to let that sink in. But folks, you just can’t make up the good stuff! “Ma’am, the bad news is you have breast cancer. The good news is, you don’t have cancer.” Okay, so…? That doesn’t make sense to anyone right? A doctor wouldn’t say that? Because it’s illogical? Right.

Long story: My chart has a few ICD 9 (official-business, insurance-coding-crap) codes for my POTS. They’re all cardiac related. I’m fighting to get the code for Dysautonomia added. Most doctors don’t know what either diagnosis is generally, but the codes I have imply that I just have a heart rhythm problem – especially when you’ve never heard of POTS. The Dysautonomia code/diagnosis would say “HEY! It’s a NERVOUS SYSTEM/WHOLE BODY problem!”… It’s important to me for reasons I won’t go into now, but it COULD make a big difference having all of the right diagnoses/codes in my files. So, I sent a message to UW about this and the call I got back via my doctor’s nurse was, “You just have POTS, you don’t have Dysautonomia. Your nervous system is fine, which is great news, so the doctor said she can’t put that down. You don’t have it.” So, wait – I’m continuing to be seen in your neurology department because…? POTS is a form of Dysautonomia because…? I have cracked out pupils and can’t decide if I’m hot or cold just for fun? The poor nurse. She took a beating. I haven’t heard back yet.   

What a busy month May shall be. Fighting with as many doctors as possible holds the number one spot on my TO DO list. Other past times will include a GI follow-up, electrophysiologist follow-up (I won’t fight with this guy), hour long pre-op with anesthesiologist because I freak people out, mom comes to town, see a new rheumatologist with bad reviews, get my throat cut open by a guy with great reviews (thyroid removal), mom leaves town (boo), post-op with ENT. 

 
Unless I’m at home. Then I just cry a lot. 

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