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.


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!!!!!


Low Energy And Feeling Hopeless

Hi everyone,

So I went to my doctor on Monday, and he said that my weight was stable… BMI is 15.5. He said he’d see me in two months.

Also, had a conversation with my caseworker, and she said, “your dietitian isn’t going to let you die.” I told her it’s not about “letting” me die. There are things with eating disorders that can’t be seen visibly with like labs and stuff. She also takes things so personally!!

My doctor didn’t take labs, and hasn’t since June. He’s not taking them again until he sees me in two months. I just don’t know. Guess I’ll just wait for nothing to happen. I’m trying to eat. I really am, but it feels impossible. Any support would be greatly appreciated.



So, I’m going !my doctor on Monday. My care coordinator from my insurance -pany will be there. My caseworker will also be there. This doctor isn’t reY a doctor. She’s a nurse practitioner. I’m just afraid she’ll say I’m not sick enough clinicY for eating disorder treatment. I’m also apprehensive that the program we’re going to at OSF will know how !help us. Guess you could say, it’s hard for us !trust professionals.


Good riddance to our former psychiatrist

So we had our last appointment with our now former psychiatrist yesterday because he is leaving, and thank God. He had told us before that he was going to prescribe 3 months worth of medication, but he is now only giving us one month supply. Also, I asked him when or if you knew anyone we could get evaluated for the dissociative issues, and he said that he didn’t know anyone who believed it actually existed. Plus, he said that he did not believe it did existed at all. He said it was just a figment of people’s imagine imaginations. I said how can he not believe something that is in the DSM? He is such a fucking jerk. Sorry for the language, but this angers me to no end. I should report him to the board. in other news, my PCP is referring me to someone she knows who treats pots. This is really good news as hopefully it will give me some answers combined with the second opinion Cardiology appointment that we have coming up on the 29th. Also, she has given me an assignment to take in at least 750 calories per day. I’m hoping I can do this. It’s going to be really hard, but I’m going to try. I’m supposed to go back to see her in 2 weeks to see if my weight has changed, and if it has dropped, we’re going to have to do something different. I am now down to 115 lbs. Later this morning, my caseworker is coming to take me shopping, and then after that the care coordinator from our insurance company is coming to do the paperwork for Homemaker Services which should be starting by the end of next week. She said that we should get roughly 20 hours per week. This is good news. Also, rpcp said that she knows a psychiatrist who might be willing to take us on as a patient. She just has to talk to her, but she says she can be pretty convincing. Given the situation with the insurance and the medication stuff, I don’t think it should be a problem, but we’ll see. I hope everything works out.