I have had a few people reach out wondering if I am ok. I am not really ok but am still alive and fighting. Not that I have a choice though lol.
Just wanted to update everyone. It has been really rough lately and I am not ready to return to Hive for blogging and stuff just yet but this forced rest has helped a bit.
I managed to get to a cardiologist earlier this month.He confirmed I had severe POTS and he did prescribe me 90 days of a medication (the medication did not work and I couldn't ask him if we can reduce the dosage etc because he already washed his hands of me and told me he is not responsible for my care)but said he cannot be my doctor as I am "too complicated". Then just referred me to another specialist. He knew I am bedbound/homebound but that doesn't matter to any doctors. They just expect me to bounce from specialist to specialist as if I am a healthy person.
This is a cardiologist that specifically treats POTS patients. Seriously WTF? He said my vitals are too complex to treat and I need to see electrophysiology . He did not even give me a specific doctor to see. Just a generic referral. Last time I checked electrophisilogy also had year + wait lists.
I crashed so bad after that appt that I was vomiting and passing out (I mean literally passing out)on the bathroom floor for a couple of days.
No one will actually treat me not matter how hard I try. They all just refer me to the POTS center which I am still on the wait list for the wait list and my chance of an appointment at best has been moved to 2027. That is not a typo. I though 2026 was bad.
I cannot describe how difficult it is to be this ill with no treatments and no doctors willing to at least try to help me. 4-10 million people in the US suffer from the same condition as I do and we are all completely neglected.
This is the reality of millions of people worldwide. It is why I talk about these things. Most people are not aware and do not understand that we can't just go to a doctor and get treatments. There are no doctors willing to treat us. 30+ years still waiting to find ONE doctor willing to help.
Too complicated to treat yet not recognized as being sick enough to deserve medical care.
