Thanks for all the support and ankle/foot update
Huge shout out to @freecompliments for doing a fundraiaing /shout out post Post can be found here.
The community has been overwhelminginly supportive and I wanted to make this quick post to say thank you. I really apreciate it.
I am in a major crash right now, so please be patient if I am not responding to your comments right away. The specialist I saw about my foot/ankle issue did what they always do and now I get to play "specialist ping pong" and no treatments for nerve pain while I wait. On my best days I am not well enough for specialist ping-pong and all the testing that involves.
Keep in mind I am very ill and I almost fainted in the exam room because they were an hour late .I cant be upright for that long due to severe POTS . This happens all the time at doctor's offices even when I inform them ahead of time about my condition. The "syncope hangover"(PEM/PESE) is no fun either.
The specialist took more time talking to my husband, who is not a patient than me (he was not asking my husband questions about my condition either). This is not an exaggeration. Seriously what do women need to to be taken seriously by the medical profession?
I am sharing this because most people without chronic illnesses have no idea how impossible the system is to navigate when you are chronically ill.Sharing my story or bits of it help validate other people's experiences even though the subject itself can be uncomfortable.
Anyway please know that I appreciate all the support from the bottom of my heart. It fills me with joy to see how many folks are supporting this project.
I look forward to interacting with you more once I am able. Please know you are in my heart/mind and I am thinking about the outpour of support.
❤️🦄
How is your health now?
Very poor. I spend 23+ hours a day in bed in a mostly dark room. I struggle to have the energy to eat and am in constant pain that is not treated (got ill as a kid over 30 years go). Cannabis helps some but not enough to greatly improve my quality of life.
I pray to God that your health recovers soon and it will surely happen don't worry.
Thank you
I'm sorry to hear that, it really sucks to be less than 100%. I'm in the same boat at the moment. The doctors really should be talking to you more than your husband and explaining treatment options with you. POTS is a really tough disease. If I can help let me know. I'm still planning on creating the piece we discussed but the current meds I'm on cloud my mind much more than I care for, so rational thinking isn't my current strong suit. If there's anything I can do to help don't hesitate to ask! Fell better!
!DHEDGE
I'm sorry you are struggling so much lately. i wish there was a way I could help. I totally understand about the cognitive issues/brain fog. It can make everything so damn hard..
Luckily I have a telemedicine appointment tomorrow and the podiatrist sent over info to my primary care doc and he did say I need an MRI and to treat it. But it's a neurological issue not a foot issue so not his specialty.
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Keep doing ya thing homie.. we can all come up together if we keep supporting each other..
Hang in there! !hiqvote
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I wish you a quick recovery my dearest friend, I will be more happier to see you able again 🥰🥰🥰🥰. I will always put you in my prayers and try the best I can.