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.
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.
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.
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.
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.
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.
I 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 others with EDS since there are so many varieties. We really are zebras! New varieties…