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
- and once more, I’m back.So yeah, medical issues again. At nearly 72, you think I would be used to this by now. Sigh. Time has slowed down in some ways and sped up in others. Mom died at 101 last fall so I might have another 30 years – all our ladies live long so not new news. But… Read more: and once more, I’m back.
- Autonomic Dysfunction Explainer
#POTS has been in the headlines frequently due to it being a Long Covid problem. Much has been written about it – meaning docs should be knowledgeable (HA!). I’m thrilled to this #EDS comorbidity becoming a more researched and known condition. Among other things, POTS now has its own ICD-10 code in the US. - Adulthood Comes Late
I tend to be an impulsive, unscheduled person. I also have a great work ethic so self-employment is a joy for me. Well, adulthood has arrived – due to my physical (not aging) problems. - Ring, Ring – Who’s at Your Front Door?
During Amazon Prime days, I bought a Ring doorbell cause it was $20 off. Great deal, huh? Only $69 on sale! (now on sale at $59) – clearance? Sigh. So buying the cheapest one is quite disappointing. - Hiding in the Open
You get used to not talking about health problems when folks either don’t want to hear it or if they don’t believe you. Medical PTSD is real and many with lifelong chronic issues know exactly what I’m referring to. I no longer hide in the open. Is it too late? I’m definitely tired of it all. I hate baring my soul about this type of issue – it’s all about money now. Few realize how little we’ve managed to live on, now how little our retirement provides. I don’t want to announce we’re poor but we are. We get help with our drugs but are not miserably poor enough for more. And we have our pride. We’ve managed til now. Usually by simply doing without. I refuse to do without any longer. I refuse to be confined to my house. I refuse to withdraw from life. - Bye Bye Twitter?
If you are like me, you depend on social media for a fair amount of social interaction and eavesdropping. The average social media user has no clue how important this is to the disabled/chronically ill community.
With all the upheaval at Twitter, I’ve been thinking about adding new accounts such as Mastodon so I dug in over the weekend. And oof. It’s not for the faint at heart. - EDS, My Old Friend, Meet MG
The Myasthenia Gravis has finally just disabled me. I’ve had issues for decades but this last decade has been hard. Now that I know I have MG, I also am aware that I’ve had it for at least 5 years and probably more. So instead of EDS driving my issues, it is obvious that the MG is ascendant. - Missing in Inaction
The 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 Steps
It 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… Read more: Part 3 of Medical PTSD – EDS & MG