Medical Paperwork Sucks, But My New PT Doesn't!

I saw my new PT for the first time today, to address hypermobile Ehler-Danlos Syndrome (hEDS). She mentioned how glad she was that I dropped off the paperwork yesterday, because she was able to really read and absorb it. 

I hate, hate, hate filling out medical paperwork. First, the obvious: It always has a section with "please list all surgeries with dates." I started just lumping 2010-2015 together, because of all the hysteroscopies, egg retrievals, and the pericentesis when I had OHSS. It hurts less that way. 

It is interesting to see that all my surgeries are either joints gone wrong or reproductive system gone wrong. Alllll the way back to my first year of life. Hmm. 

I also hate rating scales. When talking about the pain I experience, it seems not to fit into any of the available boxes. I end up writing psychotic notes in the white spaces that say things like "my pain doesn't prevent me from doing things about the house or walking, but it does punish me. I can do it, and then I have to lie on the floor for a while to recover." 

That! the laying on the floor -- I'm still flabbergasted that it is a perfectly reasonable way to give your body a gravity break, a way to find its place in space and feel supported, when you have hEDS. I was listening to the Bendy Bodies podcast, and the doctor with hEDS who hosts the podcast was like "I can do xxx, but then I have to lie on the floor." LIKE IT'S A NORMAL THING! It tickles me that my so-called odd behavior at the end of the day (or between class periods) where I lie on the floor, or the windowsill, or a table...is a perfectly reasonable accommodation strategy for my unmoored body! Ha. You can bet I'm going to lord that over everybody at school who has thought it's bizarre that I do that! 

Back to PT paperwork. 

I also had a hard time because I dropped the paperwork off, and then started thinking, "what if they aren't fluent in hEDS?" Which is totally bonkers because this place was recommended to me by my Pilates instructor FOR being familiar with hEDS. I did a whole bunch of research into PT and hEDS, and found a fact sheet written by a PT who explains things and what might be contraindicated. I printed it and brought it. 

Luckily, the PT was like, "is there anything you need to know about your diagnosis? It's a lot to take in, people often come in and don't really know what it is." In retrospect, I should have asked her for her spiel anyway because it would be fascinating to see how she defines it. But, no. I said "oh, I have gone down a deep rabbit hole of research" and then listed out a bunch of sources I've found particularly helpful. And then I laughed and told her I had a printout for HER just in case, guess it can continue being a bookmark! 

It was a good appointment, mostly evaluation for baseline which is boring, but I left feeling pretty good about it. AND, she never even commented on the sad story my medical history reveals... starting with the fruitless exploratory pelvic laparoscopy in 1999 and then that clump from 2010-2015, followed by the melon baller procedure and the subsequent hysterectomy. I think every time that's in there, someone has to say something, even if it's a relatively benign, "oh, I'm so sorry." It wasn't relevant to what we were doing PT for, and it didn't come up. It feels like a shift. 

I wish there was some magical thing that could hold your medical history and update it so you could just link to it or print it and be like HERE. (We're getting closer, I don't have to do it as much for providers within this one university system, because the portal holds EVERYTHING. But not everyone is included. Boo.) Medical paperwork used to send me into an absolute spiral. In a way I relived those 5 particularly difficult years with each thing I wrote down. But with the clumping and not cataloging all the fertility-related things and the passage of time... It was annoying, but didn't trigger my deep sadness. I wish I could tell my younger self that these days would come, where some of the grief bombs of yore are deactivated.