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

The hearing results

So today we had the hearing. We didn’t get the results we were hoping for. Meridian tried to throw some off-the-wall legal crap to derail our plans, and it worked. My attorney’s have to do more research to try to combat their arguments. The treatment center also said that a PHP program will not benefit us that we need residential treatment. My entire treatment team is angry with them, and Medicaid has some ludicrous laws about paying for residential treatment. I guess only Illinois has these laws. We are going to use the parody law argument to hopefully help our case. I really hope that something happens, or eventually we will be going to the media.

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

Feeling accomplished

So, we got some news yesterday that the appointment we were supposed to have on March 5 cannot happen because of insurance. When we were with Meridian, we had transportation, but now that we are on straight Medicaid, we don’t. So our appointment had to be moved to April 3. Our caseworker, your member Sarah? Haven’t seen her in a month, anyway, she is taking us on April 3 to see this doctor. The entire reason we got this new doctor was because insurance wanted the diagnoses to come from a doctor. So the appointment that was scheduled in January cannot happen until April. That’s a little ridiculous since it is just establishing care with the primary care provider. Anyway, the point of this email, we have not had homemakers for three weeks, and we have had help here and there from our friend Carol. Well, I did the dishes this morning! Didn’t have any issues with dizziness or my heart rate or anything. Feeling very accomplished. Later today, our Department of rehab services worker is coming to have us sign forms that she said she should’ve had a sign last time she saw us. It is going to reestablish our homemaker services. In other news, the appeal that we are trying to get against Meridian is going to be tricky because the rule that we had for months to file or request the appeal is a state rule, it’s not something the insurance company came up with, so we don’t know if we can get an extension. It’s looking like we can’t. Anyway, that four months is up on April 19. Once that is up, we cannot fight them anymore to get them to pay for treatment. We are hoping for the best.

Ray