I have been writing since I was young and this blog is a compilation of all my writing. I started writing about disability a few years ago but since I was still looking for work did not want to overburden my personal blog with reasons for employees to not hire me! At this point I have to admit I have enough problems and I’m old enough to see I’ll probably not get a job. So I’m refocusing this blog and starting to write about disablity and rare diseases in earnest.
I was told at age 55 that I had Ehlers-Danlos Syndrome. I was also told it wasn’t cureable or treatable and to go home and forget about it. 15 years later I’m still working on a real diagnosis! I also have been diagnosed with Mast Cell Activation Disease, mild autonomic neuropathy and Myasthenia Gravis, icing on the cake of rare disease!
My diagnostic journey took a major step up after getting into various Facebook groups a few years ago and I’ve started focusing on rare disease in general. Patients stories are the same, no matter the condition so a higher level look is warranted.
My articles have already been published on TheMighty.com and through that website, Yahoo.com has picked some up. I’ll keep writing – it’s what I do best when physically can’t do much!
The Latest Posts on Disability, Aging, Rare Disease
- Missing in InactionThe last few months have been a slow whirlwind for me – leading me to stop writing for a while. I’m still in early period of diagnosis of the Myasthenia Gravis, a rare neuromuscular autoimmune disease. Since my flare in October, my body has changed dramatically and figuring out what to do next has been a crazy making period for me. At least the diagnosis is confirmed and my neuro is trying to get approval for the next step treatment for me – IVIG. He says it make take 3 months to get it approved so I’m in a waiting pattern for now.
- Rare Disease Commonalities and Next StepsIt takes 6 years or more to get a diagnosis for rare conditions. I was 55 before my lifelong symptoms were identified as Ehlers-Danlos Syndrome, a genetic malady that causes defective collagen. The interesting part of this is the commonalities I’ve noted in the rare disease groups. The main one is the journey to diagnosis and how emotionally exhausting and damaging it is. I started researching rare disease alone and found a couple of studies that prove to be apropos.
- Part 3 of Medical PTSD – EDS & MGI have read so many horror tales in the Ehlers Danlos community. I attribute this problem to several factors. We spend so much time seeking diagnosis from multiple specialities. So many of us have medical PTSD – we are so used to not being believed. We are so complicated and rarely present the same as […]
- Second Stage DisbeliefBelieve Me, continued. Second Stage Disbelief. I almost died. I certainly had gotten used to being brushed off and ignored by my doctors: I was still hoping for diagnosis and for docs who believed me. Well, they believed me all right. I opted for an ostomy. An ostomy for constipation. Wow! And it was the hardest decision I’ve ever made.
- Believe me!Most everyone in the Ehlers-Danlos community has a story to tell about their medical PTSD. Watching the stories on the Facebook group for Myasthenia Gravis, I’ve realized it’s a rare disease phenomenon, not just us Zebras. If you’ve not experienced the kind of problems I’m talking about, count your self extremely fortunate.
- Aging and EDSThe last 5 years have aged me. You can now see it in my face. Many Ehlers-Danlos patients look way younger than their years and I was no exception. At 64 I could have passed for 55 easily. I have proof – a studio portrait taken for a book blurb in December of 2015. A few years later I had undergone five surgeries in 18 months and thought the death-dying deeds might be the cause of the dramatic change.
- Writing While DisabledI haven’t felt like writing so much in the last years as my brain fog increased, mostly due to the Mast Cell Activation Syndrome. Once the brain fog started clearing up after I got medications, I was cheered but during the pandemic, it’s been really hard. I always have something to say but my writing has always depended on writing in my head first. I never lost that ability but lost the ability to remember what I wrote in my head!
- The Twilight of DiagnosisTwilight – that time between the clarity of day and the murky darkness of night. When I got diagnosed with Ehlers-Danlos Syndrome (EDS) at 55, I was told by the doc that it was untreatable and uncureable and to just go home and forget about it. Once so much came online about it, I was able to get further but except for odd surgeries, cysts and hernias, it all seem to just go along without massive problems.
- It’s Never Over But Hope RemainsWe are all breathing a sigh of relief that the pandemic is fading – at least for the moment. As things return to normal and I reflect on what this last year has meant, I’ve come to some unfortunate realizations that require action. Both my husband and I are disabled and senior. In neither case […]
- M+D Crutches & the Cell PhoneI really am very glad that I discovered these smart crutches. I got them in September as it was getting colder here in Maine. I immediately started looking for a way to tote things around like a cell phone as a purse just wasn’t working out – throws off the balance and can bang the crutches.