The past like 6 months I've had terrible urogyn care. I had a UTI, gyn didn't do a culture, gave me 3 day course of meds, I didn't get better. I waited weeks to get a simple appt to do a sample and see an NP. She dismissed my issues entirely. But culture comes back positive. 1/11
Then tells me I'm "too complex" and drops my care. I scramble and go with an infection for weeks waiting for urogyn opening. Surprise I still had the same infection, the 3 day course of meds didn't treat it bc I have a shitty immune system and it was already too severe. 2/11
Then first urogyn decides I need thousands of dollars in tests and tries to convince me I need surgery. When I explain some EDS issues she tells me I'm "using my disability as a crutch and would get better if I just centered myself." So I switch care again. 3/11
At this point, I've had a UTI for ongoing 2 months. And while the last round of 7-10 day antibiotics helped, now my new urogyn finds I have high tone pelvic floor and lasting damage from the infection. I also have mild incontinence. Not a fun time. 4/11
She Rx pelvic floor therapy but they're booking out till March (it was Nov). I find another company, who manages to see me in two months. The whole time I'm waiting I'm symptomatic despite doing all of the diet changes, supplements, etc the urogyn recommends. 5/11
Then I pay $700 for 6 weeks of pelvic floor therapy in Jan/Feb. My therapist introduces myofacial release, and introduces 4 exercises. I do heel slides, squats, and deep breathing. She has me stand on one leg with my eyes closed. 6/11
In the meantime I find videos for high tone pelvic floor on TikTok. I look at YouTube. I research. And I come up with my own PT set. I'm only symptom free because I used community resources. 7/11
I only stayed in PT because I know I can't voluntarily discontinue care and expect insurance to cover PT for any other issue in the future. So if you don't have hundreds to spend, and you have a dx, please know that there are a ton of online resources. 8/11
You can use them in tandem with formal resources, or as a temporary measure till you can get an appt, or in place of unaffordable and inaccessible care. Caveat - I'm not that kind of Dr, this isn't formal medical advice, but just for other crips out there struggling. 9/11
Also no one talks about incontinence, but 1/3 women will need pelvic floor therapy in their life, and you might need it at any age. If you have incontinence, it's not dirty, it's not gross, your body is a body. Even if it's malfunctioning that's ok. 10/11
If anyone's struggling with similar issues, my DMs are open! And if you're a medical professional please for the love of God listen to your patients so they don't develop irreparable side effects from your neglect. #MedEd #MedTwitter #DisabilityTwitter 11/11

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Nicole Lee Schroeder, PhD

Nicole Lee Schroeder, PhD Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @Nicole_Lee_Sch

Nov 12, 2022
There's ample evidence that clean air matters when it comes to COVID. And while we've long known this, we're getting more and more studies proving how important this is in #HigherEd. We can keep our classrooms safe with HVAC systems, HEPAs, masking, and other mitigations. 1/12
If you've seen me on campus this term, you will know me as "that lady wheeling around a cart." That is right. I am the lady wheeling around my own HEPA filter because I am high risk for COVID. So having clean air + masking in the classroom/office are vital for me. 2/12
This is my rolling cart set up. 3/12 A large Rabbit Air A3 HEPA ...
Read 14 tweets
Sep 29, 2022
I'm engaging in a lot of encounters lately where people see me masked and ask "oh should I grab a mask?" And I know it comes from a good place, but it can be really exhausting. Why? Let's talk about access labor. 1/10
Time and time again disabled people have to ask permission to be in the same spaces as non-disabled people. We need to ask for access to the building, we need to ask for layouts, we need to ask for captioning, we need to ask for interpreters. 2/10
I am constantly asking for permission to simply get into the room. And now let's compound that with masking. I'll use my own access needs as an example here. Just to get into the office to work I have to ask for so many things. 3/10
Read 10 tweets
Sep 18, 2022
Not wearing a mask indoors right now is the perfect analogy for ableism. When you don't wear a mask, and you look over and see me masked, here's what I can read in your action: 1/7
1. Annoyance. Maybe you think "wow that's excessive." Maybe you roll your eyes. You think I'm over exaggerating the risk and performing for attention. You might think I'm making up a threat that's not there. 2/7
2. Short-sightedness. You think that if you survive COVID you're fine. You don't think about organ damage that might come months or years later. You're not worried about early Alzheimer's. I am. I know what our healthcare system does to you when you're disabled (it kills). 3/7
Read 7 tweets
Sep 10, 2022
If you're teaching this year - brush up on your emergency medic skills. We're seeing unprecedented rates of cardiac issues due to COVID. Do you have protocols in place for emergency med? 1/6
1. Know who to call and try to brush up on your campus/school map. Make sure you know who to call for what issue. Obv 911 will get you a team, but it's good to be generally aware of how close help may be. 2/6
2. Keep a med pack on you. I keep one in my work bag (for my own health issues and others). For meds I have Tylenol, ibuprofen, antacids, antihistamines, and epi pens (for me). 3/6
Read 7 tweets
Sep 9, 2022
Profs who complain that student accommodations are "hand outs" or "unfair advantages"? Please go back in time and prevent yourself from ever becoming an educator. 1/7
Seeing threads on my timeline of SO MANY disabled students struggling. Disabled students make up 15-20% of our college classrooms. They deserve to be there just like anyone else. And they have a LEGAL RIGHT to accommodations. 2/7
It is 2022. We do not need to debate the "fairness" of laws passed in 1973 and 1990. If you're not with the program, stop teaching. Bow out. Go take on a research job. 3/7
Read 7 tweets
Aug 27, 2022
A while back I wrote about my medical binder and what I bring to appts as an individual with a complex, multi-systemic genetic disorder. Some people noted that a model could be helpful. As promised, here's a thread on my medical record binder with a model at the end. 1/17
On the first page you'll see a Table of Contents. I keep this at the start of my binder to remind myself where I've slotted in all my records, and I use colored divider tabs between sections and doctors. 2/17
I begin with a Short Records section. First you'll see a Meeting Notes template for new appts. It prompts you to fill in info about what's going on, your case history, and what you've tried in terms of therapeutics. I find this helps me advocate for myself with new drs. 3/17
Read 17 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

:(