our stomach issues TW medical from Myra

TW medical and trauma

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Hello everyone,
It’s Myra. 
We’ve had stomach issues since we were about 16. When we lived with our aunt when we were 17, we threw up after a lot of times when we ate. We were under a lot of stress, so I’m not surprised. I’m pretty suffe we’ve been dealing with gastroparesis since we were a child. We also found out that we may have reverse motility issues to, because at 4 hours of our gastric emptying  study, we had 82% ofthe food left in our stomach, but at 3 hours, there was 81% left which says our intestines don’t work as they should. We want to go to Cleveland clinic, but lack the fudding. Does anyone know a way we can do a fundraiser for medical needs? We just want answers!!! We just want some hope. 
I’m tired of feeling sick. thanks for reading.
Myra 

explaining to littles

How do I explain to my littles about chronic illness? How do I explain that it won’t ever go away or that we will always be in pain? How do I explain that I can’t make their pain go away? I’m just at a loss? And how will I explain when we have to get a feeding tube?

Ray

I hate gastroparesis

Hello everyone,

I hate gastroparesis. It’s a monster of a disease. It steals quality-of-life, and so much more. I just want to be able to eat normally.. that’s all i want. this is a chronic condition, and will never go away. Does anyone have any encouragement? I will be getting a feeding tube soon. I can’t imagine being hooked up to tubing, and not having accessible feeding pumps. This will be an adjustment.

Ray

frustrated as hell!!! TW medical

TW medical

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So, my GI doctor’s office just called me and told me that the doctors weren’t making their calls to patients until the 27th of March!!! I just want answers!!! And now I have to wait another week!!! Another fucking week!!!! Ugh!!!! Sorry if I sound like a whiny baby.

Ray

appointment yesterday: trigger warning: medical

Trigger warning medical.

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So, we had an appointment with a nurse practitioner yesterday. She said the only thing she could really do is prescribe ensure.. She said she could try to move our dietitian appointment to an earlier date. We see the dietitian on March 9. We are doing everything we can, but it is still not enough. She also said, “you won’t lose that much weight in a month.” She said, "your weight is stable." I asked her how she knew we wouldn’t lose more weight in a month. She didn’t really have an answer. She says there is nothing she can do until I see the G.I. doctor. She said that there were probably other treatments for gastroparesis that I did not know about. I was just very frustrated by the end of the appointment. She couldn’t give me any direction on when I should go to the hospital for my weight.

Ray

ultrasound today TW medical

Trigger warning: medical

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Hello everyone,

Sio, today we have an unnecessary ultrasound to do that Meridian wanted done before they would cover the CT scan that my doctor ordered. I basically had to come to Springfield to have this done. So I brought my computer along to do some work, and left Eden at home, happy and eating his food. I love him. I don’t have a worker today so it will be a day of relaxing until 2:00 PM when we have therapy.

Ray

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

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

denied appeal

So they denied the appeal. We are taking them to court. Hope we win. This is rediculous.

They said we didn’t meet medical necessity criteria. To hell with them!!!

Ray