Thoughts on Official Diagnosis
Sep. 9th, 2017 01:13 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
untonugganWas going to post this in response to this post from jesse_the_k but then I realized I could just spill my feels in my own space and link back and that might be preferable.
ughhh, this is so relevant to my interests. I mean, I technically have "That Phrase" but Fibromyalgia doesn't explain everything and it's one of the phrases that still gets hand-waved (like having Bipolar Disorder, where having That Phrase both means people will take you seriously and also treat you extra shitty).
Also I am seeing an actual honest to goodness geneticist next month to see about Ehlers Danlos. Last week (?) I had to see a substitute GP because mine was on vacation and I mentioned that I was seeing a geneticist and she actually filled in "for Ehlers Danlos?" and said "that makes sense with what you're telling me"
like
WHAT THE FUCK IS THAT, NO ONE BELIEVES YOU OR JUST COMPLETES YOUR SENTENCE WITH A RARE GENETIC DISORDER IT'S TAKEN YOU YEARS TO EVEN HEAR OF WHAT
on the other hand, I have a very good PT whose focus tends to be on "just finding things that work for your body" who also is super good at adapting exercises for the individual. and her perspective on diagnosis is like "well, it's just a piece of paper, it won't change *you*"
and I like her and her amazing PT enough to deal, but periodically I just want to yell THE PROBLEM IS MEDICAL GATEKEEPING MEANS IT'S REALLY HARD TO ACCESS CARE IF YOU DON'T HAVE THE RIGHT DSM CODE FROM AN OFFICIAL DR.
also since I figured out Ehlers Danlos was a thing, I've been listening/reading/researching more. And finding out what works for other people who have similar issues. Because SEO is a thing, but also in archival research it's just finding the right combination of search terms. And I started using ankle braces this week and THEY ARE HELPING MY FOOT PAIN OMG.
like. I have had ankle issues since I was eight. To the point I don't even mention them to the doctor usually because "whoops I rolled my ankle again, guess I'll RICE it for 12-72 hours til it stops yelling at me" has been a thing for most of my living memory. And I never bought proper ankle braces because "using braces makes your muscles weak over time" or something something like that.
Except my feet stopped hurting so much and also my hips don't hurt as much? And I don't think I would have done that if I didn't have community and also at least some rationale for why using them wouldn't like, perma-ruin my joints or something because bootstraps.
buuuuut she's cool but i'm not sure if she's cool enough to handle being called out on her privilege like that? and I have no nearby backup options, so.
this is also why I haven't told her that classifying pelvic floor PT as "women's rehabilitation" is kinda very trans-exclusionary and also why I haven't given her my "ACTUALLY Ehlers Danlos is just overdiagnosed in white people because of confirmation bias" speech.
because there is literally no one else who can do the things she does and I can't find a magic book to teach me where I don't have to go to appointments.
probably this means I should write the magic book that I need, but lol that is literally my writing queue write now. a bunch of books I needed that didn't exist so I'm writing them. veeeery slowly.
jesse_the_k but then I realized I could just spill my feels in my own space and link back and that might be preferable.ughhh, this is so relevant to my interests. I mean, I technically have "That Phrase" but Fibromyalgia doesn't explain everything and it's one of the phrases that still gets hand-waved (like having Bipolar Disorder, where having That Phrase both means people will take you seriously and also treat you extra shitty).
Also I am seeing an actual honest to goodness geneticist next month to see about Ehlers Danlos. Last week (?) I had to see a substitute GP because mine was on vacation and I mentioned that I was seeing a geneticist and she actually filled in "for Ehlers Danlos?" and said "that makes sense with what you're telling me"
like
WHAT THE FUCK IS THAT, NO ONE BELIEVES YOU OR JUST COMPLETES YOUR SENTENCE WITH A RARE GENETIC DISORDER IT'S TAKEN YOU YEARS TO EVEN HEAR OF WHAT
on the other hand, I have a very good PT whose focus tends to be on "just finding things that work for your body" who also is super good at adapting exercises for the individual. and her perspective on diagnosis is like "well, it's just a piece of paper, it won't change *you*"
and I like her and her amazing PT enough to deal, but periodically I just want to yell THE PROBLEM IS MEDICAL GATEKEEPING MEANS IT'S REALLY HARD TO ACCESS CARE IF YOU DON'T HAVE THE RIGHT DSM CODE FROM AN OFFICIAL DR.
also since I figured out Ehlers Danlos was a thing, I've been listening/reading/researching more. And finding out what works for other people who have similar issues. Because SEO is a thing, but also in archival research it's just finding the right combination of search terms. And I started using ankle braces this week and THEY ARE HELPING MY FOOT PAIN OMG.
like. I have had ankle issues since I was eight. To the point I don't even mention them to the doctor usually because "whoops I rolled my ankle again, guess I'll RICE it for 12-72 hours til it stops yelling at me" has been a thing for most of my living memory. And I never bought proper ankle braces because "using braces makes your muscles weak over time" or something something like that.
Except my feet stopped hurting so much and also my hips don't hurt as much? And I don't think I would have done that if I didn't have community and also at least some rationale for why using them wouldn't like, perma-ruin my joints or something because bootstraps.
buuuuut she's cool but i'm not sure if she's cool enough to handle being called out on her privilege like that? and I have no nearby backup options, so.
this is also why I haven't told her that classifying pelvic floor PT as "women's rehabilitation" is kinda very trans-exclusionary and also why I haven't given her my "ACTUALLY Ehlers Danlos is just overdiagnosed in white people because of confirmation bias" speech.
because there is literally no one else who can do the things she does and I can't find a magic book to teach me where I don't have to go to appointments.
probably this means I should write the magic book that I need, but lol that is literally my writing queue write now. a bunch of books I needed that didn't exist so I'm writing them. veeeery slowly.
I don't know if this is reassuring or depressing....
Date: 2017-09-09 07:27 pm (UTC)No new news, but it was amazing to be treated with respect. She said, "Well, you're obviously someone who really understands her own body."
She spent ninety minutes on the first appointment, and sixty on the subsequent two. She had high hopes for Finding the Single Cause (spinal cord impingement) but we ended back up in the same old CFS/Fibro/NMH wastebasket.
We agreed that the measures I take to manage my life are appropriate, and here, try this lidocaine/NSAID salve, and get in touch if anything changes.
Re: I don't know if this is reassuring or depressing....
Date: 2017-09-09 11:48 pm (UTC)My other favorite suggestion from her is to use a racquet ball (specifically) in a long sock to massage trigger points. It really works wonders on the spot in my shoulder. She also is the one who taught me the "use the corner of a wall to massage your shoulder" spot, but the racquet ball is less...intense.
ETA: the one who's referring me to a geneticist is my physiatrist (who used to be an RN before she was an MD, so she listens). She's also the one who diagnosed me with having cervical ribs + Thoracic Outlet, because she diagnosed my mom and actually listened when I was like "so...that thing my mom has, could I have it too?"
Re: I don't know if this is reassuring or depressing....
Date: 2017-09-09 11:50 pm (UTC)no subject
Date: 2017-09-11 03:05 am (UTC)SO MUCH LOVE for you, and me, and all of us.