trigger warning: medical stuff and still more waiting

Trigger warning: medical stuff and eating disordert
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So today, we saw a different nurse practitioner as our primary care doctor is on vacation until Monday. We don’t know what we are going to do from now on because my primary care provider was seeing me once a month until the residential treatment got approved, so now I guess they are going to talk and figure it out. I also think the nurse practitioner is going to refer me to a geneticist to get tested for Ehlers-Danlos syndrome but she believes I most likely have. I also have to see the ENT again because we have ear infections in both ears. This is not good as ear infections in the past have caused our eardrum to rupture which the left one already is. We are very fatigued and in a lot of pain both because of EDS and body memories. I hope my team can figure something out. I’m hoping that I can go to the geneticist and maybe get some answers. They might need an echocardiogram before they can get it approved, but not sure yet. Think we are going to go to sleep for a while, and hopefully when we wake up, we will be in less pain. Doesn’t help that we are on our period.
Ray

please donate for a much needed device!!!

Hi everyone,
so I’m trying to get a new device called the BrailleNote Touch Plus. It’s a Braille tablet that will help me with productivity and keeping up my Braille skills. It also would be easier for me to type on because it uses a touch screen. It would be way easier on my joints. I know it is expensive, but I really need it to keep and maintain as much independence as possible. Even if you can’t donate, I wod appreciate it if you could share the link. Thanks.
https://paypal.me/rayetter/

Thank you.

Ray

Productive electrophysiologist appointment yay!

so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray

Ehlers-Danlos syndrome? Possible diagnosis

So, my primary care provider told me today that I most likely have Ehlers-Danlos syndrome hypermobility type which is a connective tissue disorder that affects the skin and that it is translucent and stretchy, but it also affects the joints because they are hyper mobile and move in ways they shouldn’t causing frequent subluxation and sprains. This along with pots makes for a very difficult time. These are both chronic illnesses. Looking for support in anyway I can get it.