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 waiting for medical tests and appointments slows time to a crawl. Finally got MRI results…
#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.
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.