Thanks for letting me blather. This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You can read all my posts on this topic here. #MyEDSChallenge

Today's prompt is "A time when someone truly understood your condition, whether a doctor, friend, family member, or stranger." This prompt really highlights some of my frustrations with both these prompts and the messaging from the Ehlers-Danlos Society in general. I'm currently taking a chronic conditions course through e Centre Clinic. They "conduct research developing and evaluating online treatment courses for people with a range of common mental health difficulties and chronic physical health conditions."  The class is really good and focuses on things like how to be realistic about our situation, for instance by using fact finding to address our fears.

Today's prompt is to "tag a fellow zebra who inspires you." First, I really hate the way the Ehlers-Danlos Society has encouraged the EDS community in taking over "Zebra" from the larger rare disease community. And it's particularly egregious when we've been finding out that hEDS, in particular, is "not rare, just rarely diagnosed." All the rare diseases deserve attention. That said, the first two folks who came to mind aren't on social media as far as I know.

Today's question is "What’s something that changed how you manage your condition?" I try to change and adapt all the time, but I think the biggest change was when a physiatrist used ultrasound to look at my hip joint and was able to see evidence of a lifetime of injured, poorly healed and reinjured tendons. I had been told so many times that there was nothing wrong or that the path to getting rid of pain was doing more despite the pain and I realized it was all a lie - my desire to rest in the face of that pain would have been the correct path.

The prompt for today is "what do I hope will change in the next 10 years?" I hope that the HSD disappears as a diagnosis, because there is no useful distinction. People with hEDS and HSD have the same range of troublesome symptoms. Some people with HSD have higher symptom burden and more disability than some people who meet the criteria for hEDS.

"Don't Z-sit." "Yes, you are really injured." This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You can read all my posts on this topic here. #MyEDSChallenge

Honestly, I think the best advice I've received about EDS is that if you've seen one EDS patient you've seen one EDS patient. And I mostly say that because some of the worst advice I've seen has been from other hEDS patients who assume that I am just like them. As an EDS patient who does not have POTS or a mast cell disorder, I get very tired of being told I must have POTS and MCAS.

Mostly I advocate by being open about what I have and being involved in my local EDS groups and other disability groups. My local EDS support groups: The Eugene group Eugene Ehlers-Danlos & Hypermobility Support and Awareness Our Discord Our Facebook And the statewide mostly online group, Oregon Area Ehlers-Danlos Society Both members of the EDS & HSD Global Alliance…

My hope for research is to improve diagnosis and  screening so we can do early intervention. I know that most of my pain as an adult is due to unaddressed childhood instability and past injuries that didn't heal properly. I only started appropriate/ effective work on my core stability a few years ago, although it's been a problem since childhood and it's helped me a lot.

I don't dream of medical care. Of course I want quality care, such as this definition from WHO: effective by providing evidence-based health care services to those who need them; safe by avoiding harm to the people for whom the care is intended; people-centred by providing care that responds to individual preferences, needs and values, within health services that are organized around the needs of people;

In general, I think one of the biggest barriers to care for people with connective tissue disorders is medical professionals who don't feel empowered to act. hEDS and HSD are clinical diagnoses because the genes involved have not yet been identified. (Current research points to there being multiple different genes that cause these disorders and I suspect as research progresses we will see further variants of EDS based on which genes cause the symptoms we now call hEDS or HSD.) Part of that diagnosis involves ruling out other causes.

So, of course I need my mobility devices (which shouldn't really count as medical but you need a doctor and a PT to get them prescribed in our system.) Beyond mobility, I need the equipment for managing my lymphadema. A pump and wraps. Lymphadema Pump Medi Juxtafit Whole Leg Wrap I also need my ring splints. I prefer plastic. …

I'm really not a reel person. So today I am going to share 2 videos of me in different adaptive chairs. Me when I first got my Merit Lever Drive Video my mom took of me in a David's Chair This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You can read all my posts on this topic here. #MyEDSChallenge

As humans, our emotional well being and our physical symptoms can influence each other. The limitations and unpredictability of chronic conditions like EDS and it's comorbidities can be hard to deal with emotionally and that can make symptoms worse. When we are feeling good physically, mentally or emotionally we have more resilience to manage any struggles in the other areas. Additionally poor health in one area can cause symptoms in others and this can cause a spiral of improving symptoms up or down.

A big part of my support system @laprice. I can always count on Larry in a pinch and I don't think I could manage to live independently without his help. He's a great friend and has a handsome and sweet cat. Chubbs Max Faux-Chi brightens all my days. Max Faux-Chi My medical team, especially my GP, Laurel, and all the staff at…

Me in #Reds4vEDS This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You can read all my posts on this topic here. #My EDS Challenge #REDS4VEDS

I wish people knew how exhausting EDS and other chronic illnesses can be. I wish people knew how much I miss my career and would like to be well enough to work. I wish people knew how much I struggle to function and how much just doesn't get done because I can't do it. I wish people knew that there is no ergonomic way for me to do dishes.