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.
For-profit healthcare is a net negative for any society that practises it. I am deeply, deeply sorry for what you are going through. Sounds like a real catch 22 type situation 😔
What's the point of being a doctor if not for compassion...
Can I do something to help?
For profit health care is the worst. However, this is a global problem. Folks with my illness clusters all over the world are treated this way. No treatments. Doctors dismiss and gaslight patients. There is no place in the world that takes these illnesses seriously.
I do appreciate your question what can you do to help -I don't think there is anything unless you know a physician who is willing to treat me. Or you are connected to congress and can get some sort of emergency action from the government to help the millions of people like me. This is not sarcasm. I really don't know any other way to get help for myself and the millions of others suffering the same fate.
I can't even get basic symptom management. Doctors do not care that I faint and have fainted for decades. My heart rate and blood pressure numbers are dangerously high with even just a little orthostatic stress (sitting upright for a few minutes).
My autonomic nervous system is failing and it doesn't matter to anyone in the medical field. These are things doctors can "see" and confirm with tests. This is an objective observation but it doesn't matter.
That is just one issue I am dealing with. Crippling fatigue , intense pain, immune dysfunction ,cognitive impairment and so much more. All connected to an illness and cluster of illnesses that are not rare and not new. But they mostly affect women so societies do not care. These illnesses are underfunded worldwide and have been for decades.
I need a doctor willing to treat me. .This shouldn't be like asking for a miracle but it really is. I think I will have better luck finding a living, breathing unicorn. 🦄
We are the millions missing and we all need help.
I really do appreciate your kind words and support. I means a lot to me. ❤️
Female Medical Bias is a real problem that I am only just becoming aware of!
@bunny11 sent me this yesterday about an inquiry happening in a state of the nation I live. Doesn't help you at all but I still wanted to share.
I know you're not being sarcastic. I don't know a single physician personally and I don't have congress connections. All I can offer is a URL to something totally irrelevant to you and... connection.
Your illness sounds really complex. Is there a medical name for it? I don't say this lightly, but have you tried medicinal cannabis for symptom management? Possibly you have, but I don't know. Everybody is different and I know that my body responds well to cannabis when I have medical problems.
Still fighting and surviving! Commendable! 😄
Oh and yeah I use cannabis daily. It helps a little but does not get to the root cause of my illnesses. It does make life slightly more enjoyable and sometimes helps with pain and cognitive function.
Glad you're still alive and fighting the fight!
Really have no words for the lack of medical care you don't get.. 😒
!hiqvote
I am really happy to hear from you again. For some time I have also been wondering hope everything is fine because it has been quite a while since I saw your update on this platform. I will have to reach out but I have no medium to do so also
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I am just speechless. Here I thought that one can get the best medical treatment in the US without knowing that patients are neglected, imagine giving you appointment for 2027, this is heartbreaking.
It's a good thing that you are have accepted the way things are now and living the best of your life now, I like your courage and all I do is wish you well and miraculous healing.
Sending you.!HUG
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The title of your post brought me here and I thought it was one of those war against whales and downvotes but my heart sank the more I read. I am sorry dearest @spoonies for all of these and for many who go through this same problem.
Just hang in there for a little while, you will be fine, even if not now but surely🌸🌸
I’m sending you lots of !LUV and a big warm !hug🤗 from this part of the world, you’ve got this friend so keep fighting!❤️😃
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Long time not heard, wanted to check in if you're just having other stuff on hand or having a really rough time?
I hope it's the first option, wishing you all the best!