I know it’s been a long time, for good reason. Well, maybe not so good…

I updated a year ago just after my life was turned upside down from some kind of neurologic crisis or stroke. This last year has been getting almost diagnostic testing in every way imaginable. I was then referred to a different palliative care doc that has missed the assignment for over 6 months. Instead of getting me to tolerability, he wants to destabilize me and take me off the only meds that have truly helped since we started and put me on Suboxone when it is clearly contraindicated for those with hEDS, POTS and MCAS. They wanted me to also come off prednisone that is treating my brain on fire symptoms; brainstem and brain felt like a lava hand holding them. Recently I took on an upper cervical chiropractor that only uses instruments to adjust. She is having to realign my entire upper cervical region. Slowly but surely, we will get there. I am also in a cast from breaking my hand and wrist. No breakthrough meds. I was forced last year to give all that up just to be referred to a YouTuber to learn to mentally cope with my severe pain that is caused by so many falls since the hospital visit. I believe we are at 8 falls now. But they weren’t worried about the falls until I had a DEXA scan due to being on the steroid at all. The ONLY place of concern so far is my hips. I have osteoporosis there and osteopenia in the femoral neck and lumbar vertebrae. But my skull and neck and anywhere else shows normal for my age density. They are asking me to call around to get the right hospital bed needed. To get the leg squeezing devices to prevent clots from being so sedentary. We are hemorrhaging money to accommodate what I need. When insurance should be covering most of it. However the docs don’t know how to or don’t feel it necessary for my needs. I’ve been on the waitlist for quite some time so I can infuse portably and not be strapped to the bed when I need to be given the chance for physical therapy to even be able to happen. I’ve had this flyer made. Please if you’re able to print it or save to your devices for others to be able to just scan your phone. Moral of the story, everything has gone downhill. There are abnormal findings on everything. But there is nothing being truly done to ease my suffering and give me quality of life and less misery. All because they are afraid of their license. No more! Please share this petition far and wide to get as many eyes on it. Don’t be afraid to send to your docs in your electronic charts! I set it to several of my docs. Just don’t EXPECT anything back in feedback. Please keep fighting the good fight. Make videos or posts promoting this. Nobody has to spend money at all to sign. You can skip the donation prompt! I do hope that helps. Let’s get our voices heard!! Because NOBODY SHOULD BE LEFT TO SUFFER IN PAIN!!!