Got an EGD

So we went to the hospital for an upper endoscopy G.I., and then were admitted for observation for 23 hours. We were supposed to get a CT scan of the abdomen and pelvis with contrast, but insurance denied it first on an outpatient basis, and then when we were admitted to inpatient, they did the same thing saying we need an ultrasound first. The doctors confirmed that an ultrasound would not show what they needed it to show. They need to rule out superior mesenteric artery syndrome. They are pretty sure it is gastroparesis, but a gastric emptying study is needed to confirm this. My anorexia diagnosis was changed to avoidant restrictive food intake disorder ARFID. The nurses and techs were lovely and the doctors were really nice and understanding about my situation. They didn’t even flinch when we told them about the dissociative identity disorder and PTSD diagnoses. This hospital is by far the one that has treated us the best. They were just as frustrated by our insurance as we were. They said that the best bet is to get the gastric emptying study in two weeks. We are already severely underweight, but really nothing to do about that as it is hard for us to eat more than six or seven bites without getting full early, bloating, and feeling nauseous. POTS and Ehlers-Danlos syndrome were confirmed while we were there. I touched my thumb to my forearm on both sides, and the doctor said, “yes, that’s classic Ehlers-Danlos syndrome.” They already suspect gastroparesis. I hate stupid insurance. I hate that insurance dictates the medical care we receive.

Ray

chronic pain is my companion Trigger warning

chronic pain and medical stuff trigger warning:

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chronic pain and fatigue is my constant companion. I retain urine, it hurts when I eat, I constantly dislocate my shoulders, ribs, and fingers; my hands and feet are constantly cold; if I stand to long, my legs hurt because of the blood pulling; my jaw hurts after eating or chewing; I just want to be normal, but chronic pain is my companion. Brain fog is always an issue. I just feel so alone.

I had to cancel therapy yesterday because of the fatigue. I also woke up yesterday with a dislocated rib and shoulder which I had to put back in. I knew it was going to be one of those days. I hated to cancel therapy, but it was necessary. Thanks for reading.

Ray

eating issues and medical stuff TW

Trigger warning: eating and digestive issues and chronic pain and medical stufft
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Hello everyone,
so we are really struggling with eating because of pain from eating because the food just sits there and doesn’t move for a while. Also been struggling with heart rate and blood pressure issues. I do think this is related to EDS (Ehlers’ Danlos Syndrome). All alters as far as i know have agreed to try with eating, but the physical stuff is making it really hard. We haven’t used laxatives in a few months which is good, but now we are finding it hard to even try a lot with eating because of the physical pain. The fatigue is a lot to handle. Heart rate the other day went from 82 to 132 from laying to standing. I do understand that there are mental health things going on, but there are also physical things going on as well which complicate the mental health stuff. I don’t even know where i was going with all this, except to say that we are very frustrated. The Reglin isn’t working anymore either. Ugh!! Blood pressure was 89/46 the other morning. Our new worker is recovering from anorexia, and she doesn’t understand all the physical stuff we have going on, so when she asks us if we’re hungry, and we say no, she thinks it’s because of the eating disorder, but it’ really because we know how much pain eating causes us. I wanted to be honest about this with people and hope you understand that there is more to this eating issue than just an eating disorder. We’re just really complex patients. Hoping the new PCP can help figure some of this out. She is referring us for genetic testing. I’m just at a complete loss.
Ray

getting referred for EDs?

My new PCP is finally referring me to a geneticist for EDS!!!! Yay!!!! So excited that this is finally happening!!! She asked me why no one had referred us before. We told her about our mom having joint issues and the fact that we were born early because her membranes ruptured early. That’s a sign of EDS when combined with the other issues with the joints and the skin. Finally, someone gets it!!!!!

Ray

trigger warning: medical stuff and still more waiting

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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.