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

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

Ciella in therapy

Hi everyone,

It’s Ciella.

So Friday in therapy, Lily was talking to me on Zoom, a video conferencing platform, and she saw our shirt, and she thought it said allergic to Mommys, but it said allergic to mornings. I pointed this out to her, and she said, “well, guess I have bad eyesight,” and I said, “not as bad as mine.” We laughed for like 5 minutes straight. It was hilarious. We love her so much!

Just thought you could use a laugh for the day. 😊

feeling overwhelmed (trauma) from Ray trigger warning

Trigger warning: abuse

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just feeling very overwhelmed right now. Trauma sucks and getting new memories…. i don’t need this right now. The only way i know to make them stop is to not eat, and then we just had the whole thing where Lily and us feel stuck in therapy. This hearing can’t come soon enough. Ugh, I hate this!!! wish Lily weren’t so far away.

Ray

Therapy yesterday

So we had therapy yesterday. We were exhausted when we got home so went right to sleep afterward. We discussed a lot. have most of the session, and then Emmie had some of it to. I talked about how there’s only so long that we can be expected to be strong, and how that I felt like we were being retraumatised again by the insurance company because it felt like they had all the control. It feels like they are dictating our lives. I was so overwhelmed. Lily introduced us to theraplay. It’s a technique that helps me and other parts get the care we never got as children. It helps us experience what a true attachment is supposed to be. You use things like objects to stemulate the senses. It’s pretty cool. Also, things like good toutching and pressure touch using lotion to show what a good touch is. It was a good session.

Ray

Doctor’s appointment and therapy yesterday *tw* sexual abuse

Hello everyone,
So yesterday I went to see Dr. Dynda, and he said that from a medical standpoint everything was fine as my vitamin D went up by three points. He said your weight is stable it’s above 90 pounds at least it’s not 80 or 70 pounds. He seen me in three months. He also told me that we have to restart this entire process of trying to get into River Oaks. What has all this work done for for the last year? Has it been for nothing? I just feel like everyone spinning their wheels because no one knows what to do.
Also talked to Lily on the phone yesterday and we talked about the sexual assaults that we suffered as an adult. I thought I was ready to tell her about them so I forced myself to, but that was not a good idea. I am some of the others are in flashback land. It’s not good. My doctor also wants me to go to my psychiatrist appointment today, but here’s the psychiatrist who said he does not believe we meet criteria for anything that we’ve been diagnosed with. I cannot knowingly go to someone who is not going to believe what I say. So I’m not going. The doctor did say that if I don’t go it would not look good on my insurance. He said it would look like I am not complying with the treatment they are willing to cover.*Sarcasm*
Today we are meeting with Sarrah for a two hour mental health assessment review. Sara is our caseworker. I think Amelia is going to write her a letter or something I’m not entirely sure what’s going on with that, but there’s really nothing Sara can do. If the insurance won’t pay for the treatment we need, we can’t force them.
Ray

? Not a good enough anorexic? not sick enough?

Going to the doctor in a little bit, and I know I have gained weight. My fear is that he is going to say I am not sick enough for treatment because I gained 2 pounds. I just wish this were easier for us to handle. I hope we are able to get into river oaks. I know I need treatment, but I still can’t help feeling that I’m not sick enough that I don’t deserve it.

Ray

Dark Place

I’m not ok. Dr. Bland took us off all meds. No one will help us. Our team isn’t answering my calls or returning them. I’m not sure what to do. I can’t go to the ER. They send us home even after suicide attempts. They don’t care.

Trigger Warning:

I now weigh 99 pounds. I’m 5 ft. 4. I just can’t do this anymore!!!

Ray

Just got back from the hospital today

So, we just got back from the hospital. It was a frustrating experience. Everyone there was recommending residential treatment, but Medicaid won’t cover it. I know reallistically that I can’t afford to lose more weight but there are times when I just want to keep losing. I know it’s not a good idea. Also, my therapist wants me to bring in information for her about my DID and the ED. I can’t do her job for her. I’m not qualified to train her. She has no one to refer me to as no one around here has any experience working with DID or ED that takes Medicaid.

Meridian even director involved in my case, and they still said no that they wouldn’t cover residential. They even said that if we needed inpatient ED treatment that they wouldn’t pay for that either. I tried to get into Timberline Knolls, but that’s a long story. Here goes.

So a few weeks ago, I called TK to see about going there as my insurance said that they could do a one time single case agreement with them. I told them I was blind, and they said that they had to take it to their board of directors. I then did the intake asesment, and they said that there was no reason why I shouldn’t be able to get in. They then called me the next day and said that they couldn’t accept me because of the number of alters I have. That was a bullshit excuse. I honestly think it was just another excuse for them to cover up the whole blindness thing. Just not sure what to do.

Ray

IN THE ER

So we’re in the ER again. We haven’t been here for three months. Just couldn’t handle the meds not working. The system was going down fast. I was actually on lockdown because I couldn’t cope. Now it’s just a waiting game to see if anyone accepts us. I texted our insurance care coordinator to tell her that they needed to pay for the treatment I needed not subpar treatment. I will keep you updated if I can. Thanks for reading and all your support.

Ray