#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.
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.
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.