Headache

Hi, my name is JuniperGal. I'm here because I need help. Mentally Physically Spiritually. Been in pain since I was 12. I've been through 22 surgeries, body casting at age 2 for 2 1/2 years the first time. 2nd time age 24 for a year & again at 26 for a year. Then metal brace for a year. First operation was a triple osteotomy of left pelvic area. After a year they realized it was nonunion. Revision of osteotomy. Then 9 dislocations of a hip and 2 of the shoulder. Years of chronic systemic metal ion poisoning. Then came the spine- Compression fracture of vertibre by just putting jeans on. Fell and broke my right shoulder. Fell again, 4 more vertibre compression fractures. Then a failed spinal fusion. Haven't walked since. At age 24 the pain Dr at Rush diagnosed me with Reflex Sympathetic Distrophy of left leg (now called complex regional pain syndrome). My most recent ER visit for falling flat on my back & hitting my head pretty hard. Was a joke. I also lost ability to move left foot (foot drop). They said my muscles were weak and I wasn't an emergency. My constant migraine was just a headache. No x-rays, CT scan, MRI, nothing I was told to call someone to drive me home. Second and third ER visit (my PCP told me to keep going back) accused of being in opioid withdrawal, searching for pain meds. My doctor said to try going to a different hospital ER. 8 hours later, dismissed as usual. FINAL visit; a doc recognized that I had a massive concussion and admitted me for more testing! A couple days later the doctor came in kinda laughing states "Well you're right, there's something wrong and boy your husband is going to be pissed.) " You had a stroke. Would I mind being discharged to a rehab facility. They also said I had sepsis, a hole in my heart, pneumonia, that the constant migraine, and hallucinations should get better soon. At discharge the lovely nurse decides I don't really need to go to rehab. What an idiot. So that brings us to the present 4 months of laying in bed (can't have any pressure on my pelvis)loss of all muscle 💪. Some tendons & ligaments have turned to bone like material.
Stay tuned in for Part 2. *. Fighting for my meds!

#MightyTogether #Depression #PTSD #EatingDisorder

Hi, my name is SurferPixies. I'm curious about this:
I have generalized anxiety disorder, and it seems to have gotten worse lately. Everything really seems to trigger anxiety in various forms — like yesterday I had family over, and I’ve noticed a few times now that after social gatherings I feel sick, physically nauseous with a headache, even though I’m happy to see them, but it’s like it drains all my energy, not knowing if I’m saying (or not saying) the right things, etc. I can’t take this overwhelming anxiety anymore 😕I’m I alone in this scenario? do you have some tricks for me that can help me out a bit ? thanks a lot for your time !
#MightyTogether

Day 20-POV: Living With EDS or HSD

I get up this morning and my shoulder cracks. At least I’m lucky, the joints of my fingers came back into place overnight. I have a headache. I’m thirsty. I need to remove the goutiere that I’m wearing to avoid bruxism and relieve my jaw. My jaw still hurts, though. My doctor told me to make an appointment with a physical therapist who specializes in TMJ. I get up and go have my breakfast. Acid reflux is hitting me and I still have the day to spend and finish revising my classes for my exams on time. Arg...

Day 21 – Representation Matters

Representation matters because I think that without the biases of doctors, we would be better diagnosed. It’s not because we are young, because we have a different skin color, because we’re a woman, a non-binary person, etc... that our feelings aren’t valid. hEDS and HSD do not have biological markers defined as for other diseases. The doctor must therefore diagnose according to a list of symptoms that are most often invisible to him. We don’t live with them after all. However, because of their biases, they do not listen to us most of the time, which often leads to medical wandering or even worse, often psychiatric diagnostic errors with consequences for our health. That’s why representation matters.

Day 22 – A Resource That Helped

First, I would say the stories about the mighty as well as the playlists (chronic pain and disability). Then, it’s the website of the elhers danlos society that gives interesting advice. Then I will look at the websites of associations specializing in EDS and HSD. But the first two are more than enough in my opinion.

Day 23 – What Earlier Diagnosis Could Change

Early diagnosis would help with mental health already. But I think that, at the same time, to reduce the time spent on medical care, we should improve the way of announcing the diagnosis. I don’t know about you, but I found the diagnostic announcements very traumatic because they just say: "you have X and goodbye." There are no explanations given. For me, my diagnosis of HSD was shocking because the doctor didn’t even tell me or my parents, but I learned it by reading a report from the appointment with this specialist.

Day 24 – Something I’ve Unlearned

Sometimes, despite everything you are told, just trying is already enough. Taking one step after the other, even when very small, is enough. You were just able to clean the window of your room but nothing else, it’s OK. Your house doesn’t look like a Pinterest board, it’s OK. You feel good in it, that’s fine. Trying is incredible, and if you succeed, even better. You fail, it’s not a big deal, maybe you’ve learned a limit or another way of doing things.

#EhlersDanlosSyndrome #Disability #Autism