trigger warning medical update on us mentions cancer

TW Medical stuff mentions c*ncer. . . . . . . . . . . . . hello everyone,So, we went to what was supposed to be our dietitian appointment and an appointment with a physician assistant yesterday, and it ended up being an adventure. First off, we had the time for the appointment wrong. We thought it was at 2, but it was at 1. Got to love dissociation.So, we called Karen, and she said that her 2:00 patient might not show, so we took this opportunity to see if we could get ,the EKG done that the doctor in Chicago needed done. We got to the cardio floor only to realize that the hospital receptionist had given us ‘the wrong fax number to give our doctor in Chicago, so they never got the order. The person in registration at the hospital called my doctors office and got the order refaxed. We were so grateful to her. So, we got the EKG done, but when we called Karen back, she said she had to reschedule, so we never saw her.We then went to our follow-up appointment, and the ladz was really nice. The nurse we worked with also has two daughters with EDS and is in one of the Facebook groups we are in to!! This was really amazing!! We went to the secood appointment, and Chribbsy as she likes to be called, prescribed us some Omiprizole for acid reflux and some Zofran for We got some of the results of the scope we had done earlier, and we have an irregular Z-line which is caused by acid in the esophagus. The Omiprizole is supposed to help with the acid stuff. TW cancer mentioned. . . . . So we looked up what irregular z-line is, and we found that it can lead to Barrett’s esophagus and then possibly lead to esophageal cancer. This scared us a lot… We have to have repeat EGD’s every three years.
On another note, we were supposed to have therapy two weeks ago, but we had a doctor’s appointment so couldn’t make it.We had another one this past Friday as well, so Lily said she could meet on Saturday, so we were looking forward to that. She then texted us on Saturday to say she had a family engagement and couldn’t meet and asked if owe could meet on Tuesday. We had to say no, that we had a doctor’s appointment, so owe are meeting on Friday. We have our gastric emptying study on Februarz 5th, and hope to get the results back a few days after it. The meds will only be a Band-Aid solution as they won’t speed up the emptning of my stomach. We will see how it goes though. Sorry this is so long. Saphire is still struggling. She’s struggling with and flashbacks feeling so real, and with all this medical stuff going on, Emmie is having a hard time to. Thanks for reading, and sorry if this was triggering.Ray

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

Trigger warning weight and food and medical our psych appointment

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So, yesterday, we had our psychiatrist nurse practitioner appointment. We were talking to her and discussing our situation. We told her there were no more medications they could try for motility issues. She said it is super frustrating to feel like you’re not even in control of your own body. I told her that yes this is exactly how we all felt. I told her we wished they would just put in a feeding tube already because we are so exhausted from all of this. Even drinking water makes us feel nauseous. We don’t really know what to do. We are already down to 92 pounds, and our dietitian said that if we got below 90 we would have to go back to inpatient for eating disorders. None of the other people on our team is recommending that. They said that with the other medical issues we have going on that if we had to go into a psych hospital, it would have to be one with medical facilities attached, and we don’t have many of those. None they will except us anyway. We are trying our best and doing what we can, but we don’t know if it will be enough. Our gastric emptying study isn’t until February 5.
Ray

from Miranda

Hi, it’s Miranda. I’m 16. I don’t like being in pain. i hate it so so much. pain makes me feel sick. ugh!!!! why do i have to b in pain? 

Miranda

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

Frustrations with the healthcare system

Trigger warning eating disorder and I don’t know what else
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So, I spoke to my care coordinator, Courtney, at the insurance company, and she said that as long as the state isn’t forcing them to pay for anything, they’re not going to. She said residential treatment will not be covered no matter what we do. She said I was going to have to find intensive outpatient or partial hospitalization program options. I told her that the closest one was two hours away, and she said, “well we provide transportation. “ I told her that that was not the point, but partial hospitalization was not clinically recommended by anyone on my team. I said to her, “do things have to get really bad before insurance will do anything? Or are they just going to let me die? I know my providers won’t allow that to happen, but still, I still wonder this. Why does the insurance have to govern the treatment we get when they are not even the professionals on my team? It doesn’t make sense. I don’t want to have to get down to 89 or even 85 pounds and have to do this continuous loop From inpatient directly back to outpatient, skipping three levels of care, but I really don’t see that we have a choice. As long as money hungry people are in charge of making the decisions about what they will cover for my healthcare, then I feel powerless. This is beyond my insurance company at this point. It is at the state level. I don’t understand why the laws in Illinois aren’t protecting us from this cruelty and depravity. It doesn’t make sense! Not only that, but my physical health problems are being blamed on my mental health. Eating disorders don’t cause hypermobile joints or scoliosis or any of the other symptoms of idiots that I have which doctors refuse to diagnose because insurance again won’t cover genetic testing. Insurance won’t cover my prosthetics to be replaced which I’ve had for 10 years. I don’t understand what I have to do to get the healthcare I deserve as a US citizen. I feel like I’m fighting for everything I’m asking for. I fought to have us recognized as a system. We have been fighting insurance for over two years at this point. Can’t even go to the doctor for a physical health issue without them saying that I need to get the Mental Health treated first before they can help with the other stuff. I probably sound like I’m complaining too much. I should be grateful that I’m alive.
Ray

dietitian, psych APN and doctor?

So, today, we have a day full of appointments. We are talking to our psych APN at noon, then we see our dietitian at one, then we see our primary care provider at 2:20 PM as a follow-up from the ER visit we had on Thursday. Going to be a very busy day indeed. I wish we could get some answers, because our treatment team is scrambling to come up with a stable treatment plan that will work on an outpatient basis when they know we need residential care. Wish us luck.

Ray

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