#ehlers danlos life
*Breathes*
*shoulder dislocates*
When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.
No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.
FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.
DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
It’s 4am and I’m up because my stomach is not happy. I don’t know how I’m supposed to wait until December for my colonoscopy when every time I eat I get cramping and diarrhea. My health is still going downhill very quickly, and my meds don’t seem to be helping much. I’m going to email my EDS doctor and let him know what’s going on, because at this point. I feel like we need to re-evaluate what we’re doing to treat my condition.
imagine if shoes cost $2,000 a pair for ones that do not actively hurt you and are designed to be walked on for more than just a few steps. $2,000 at minimum for the luxury of being able to move around without being injured. that is what wheelchair pricing is like
While 2k is the average, I found a $200 one. Not that I’ve spent that on sneakers, and I used to go for nice Nikes too. And this doesn’t add in shipping and customization. But maybe your physical therapist could do the customization adjustments for you.
The problem I have here is that, yes, manual wheelchairs can be found relatively inexpensively. However, powered, or power assisted chairs are INSANELY expensive. I have Ehlers Danlos Syndrome, and as a result, both of my shoulders sit pretty permanently out of socket. I can’t safely use a manual wheelchair without causing myself more irreparable damage, but insurance won’t cover a power chair because I can walk, although it is painful and I cannot walk for very long.
Medical equipment should be affordable! It doesn’t cost $3000+ to manufacture a power chair, and no one can convince me of that. And while we’re at it, give ambulatory people power chairs! A wheelchair would help me so much, I would be able to go out and actually enjoy going places instead of turning down friends because of the inevitable pain I’ll be in if I say yes. I’m so tired of saying no to my sisters when they have plays, concerts, etc, because I can’t spend 4 days recovering.
Ahem. Sorry. Rant over.
I dislocated my middle finger and it feels like my hEDS is trying to tell me something.
I once dislocated the top of my middle finger whilst wiping my ass. No joke, I’m 100% serious. It hurt so much, and I don’t have splints for those joints because they really aren’t an issue for me (usually)
Sup zebras, I’m starting an EDS YouTube channel. It’s called Braced For Impact (because this bitch is buying new braces ever other week it seems). No videos yet, but I just got my new phone, so let the filming commence!!!
My mom is suddenly mad about “having” to go to my GI appointment tomorrow? She always wants to come to my appointments, plus it’s better to have someone with you, especially being a young woman. And this is the first time ever going to this doctor/ practice.
Also, she wants to make me take an uber to the doctor so she can go out with her boyfriend. How fucking childish.
Calling all fellow Zebras…
Yesterday I was diagnosed with EDS type 3, and during that appointment my doctor said that it is likely I will develop further complications within 10 years. Currently I have chronic pain (joint and nerve), sublux/dislocations, migraines, sleep apnea, heat intolerance, intermitant gastric upset, and soft delicate skin, but no POTS or Gastroparesis, ect. Try as I may, I have found nothing on the progression of this condition, and I was hoping the vast spoonie community might have some insights.
This condition has already taken my independence, my college degree, and my active, pain free life from me, and I want to have a heads up if I’m going to lose more. The hope is obviously that I will not get worse, and that meds will help my pain so I can ditch my cane and get back to a semi normal life, but I’m a little too cynical for that right now.
Bringing this back, since I’ve been diagnosed with POTS, am looking for a GI because of worsening digestive problems and weight issues, and am getting a cervical and thoracic MRI tomorrow to look for structural issues that may be causing worsening migraines, skull pressure, and drooping during migraines. My tremors are also worse, and I may have periarticular osteoporosis (whatever the fuck that is, can someone enlighten me? My shit ass rheumatologist lied to me, told me I was fine, and then a year later I found out that she had lied and discharged me)
Me *pre-diagnosis*: something is wrong, I’m in a lot of pain and my ankle is unstable
Doctor: It’s all in your head. You need to see a therapist to talk about your issues
*gets diagnosed with ehlers-danlos syndrome*
Me:
Some days, I hate who I am. I hate my disability.
But most days, I have learned to love myself for everything I am…
And I hope you do too ❤️
Hear yee, hear yee!
So@supernini235 was super super awesome and made a discord for us spoonies. She figured out the whole thing a lot faster than I did .
Feel free to join!
We feel like we have to project this image of disabled and chronically ill people being so brave. Like they’re such heroes because of everything they go through without complaining. And it’s true that we’re cool, but sometimes I’m sick of it. Sometimes I don’t want to be seen as someone brave or tough, even by myself. I cried for hours today because the pain just got so bad, and afterwards I found myself apologising to my family. Screw that. Why was that my first reaction? I want it to be okay for me to have days when I’ve had enough of it, to just cry and be sad and angry and frustrated because it’s not bloody fair. To not constantly worry that I’m a burden to everyone around me. Sure, I like making people smile, I think it’s good to be sunshine when you can’t find any, but I’m sick of insisting it’s not raining. I like to inspire people and do good where I can, but I am not your inspiration. That’s not my sole purpose. I didn’t choose this. I don’t owe it to anyone to turn this into some kind of origin story. Some days I just need to frickin survive and know it’s ok to not be ok and cry without apologising for it and be mad without feeling guilty because this is not my fault
