FROM MYRA TW FOOD

TW FOOD

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HI, IT’S MYRA. I WISH I COULD EAT SOLID FOOD. I MISS IT SO MUCH. I MISS CHOCOLATE AND CHIPS AND ICE CREAM. IT JUST MAKES US SO SICK TO EAT IT. IT’S NOT FAIR. WHY DOES OUR BODY HAVE TO DO THIS TO US? WHY CAN’T WE JUST BE NORMAL? WHY DOES IT HAVE TO BE SO SO HARD? I’M STRUGGLING TO SEE HOW OUR BODY DOING THIS IS NOT LIKE THE TRAUMA WE WENT THROUGH. MY HEART HURTS FOR EMMIE AND HER PARTS TO. THEY ARE STRUGGLING SO MUCH WITH ALL OF THIS. DOES ANYONE HAVE ANY ADVICE?

MYRA

Thankful for my feeding tube

I am thankful for my feeding tube. It gives me nutrition. It gives me life. Without it, I would probably die. Chronic illness is a monster, but that tube gives me power. It gives me the power to live the best life I can live. It gives me the freedom to go where I want to go and do what I want to do. Gastroparesis will not defeat me. Maybe in the next 5 to 10 years, they will come out with a treatment that is covered by state insurances and is FDA approved, but until then, I am grateful for this tube. Yes, it may be uncomfortable. Yes, it may look weird to other people, but it’s my lifeline. Did I want this tube at 27 or at all? No, I didn’t, but I needed it to sustain my life. My stomach is almost completely paralyzed, but with this tube, I can live. Have a good day everyone. Thanks for reading.

Ray

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

scared TW medical and trauma and death

TW trauma and medical and deatht
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Please read carefully, from a concerned Ray and system,
We are freaking out about the Corona Virus, and not only that, but we are worried about the state of us medically. We are 88 pounds now, and we can’t get enough fluids or calories. We emailed our POTS specialist yesterday, and he is going to send our PCP some recommendations for IV fluids as a standing order or even home IV infusions. Yesterday, our heart rate got up to 141, even after taking our heart rate medication, and our blood pressure was 80/50. We are damn scared. We don’t want to die!! Our dietitian isn’t going to our GI appointment with us after all. She didn’t see the point. She said it wouldn’t be feasible. We spoke to the social worker for our course and to our instructor, and they are verry supportive and understanding. They said they wouldn’t let our DVR counselor take us out of the class. If we didn’t have that course, we would drive ourselves crazy with to much time on our hands thinking about everyting going on right now for us. During the day, our heart rate goes into the low 40’s at times. It’s scary, but the local hospital won’t do anything. We just have to wait to see the GI doctor. And now that we might be needing a feeding tube, Meridian has agreed that they will pay for the out-of-state treatment that we have been trying to get them to pay for for the past 3 years, but here’s the problem with that now. If we get the feeding tube, no residential place, or even River Oaks for that matter, will accept us because they don’t have the medical oversight to manage a J-tube. So, we are so close, but yet so so far away. We don’t want to die!! This is medical neglect. This is bringing up a lot of trauma stuff for us as well. We are trying our hardest to just hang on and not be swept away by all our emotions. We know we need help, but the medical system is failing us, big time!! Not sure how much more of it we can take, both physically, or mentally. We have no backup crisis plan, because no one knows what to do, and no place will take us because we are to complex and considered a liability. We can’t do standard eating disorder treatment programs, because we have an almost completely paralyzed stomach, so we are just told to wait and see GI. We were given a list of foods to avoid and ones to try by our dietitian, but the list is in print, and she just said it’s about trial and error. We were only able to finish half of an 8 ounce shake in her office on Monday. She could tell we were struggling, and she said she didn’t see an eating disorder when she looked at us. She also saw the results of our gastric emptying study, and she said an eating disorder wouldn’t cause results that severe. Doctors don’t know enough about this condition, and there is not enough research being done on it. We are desperate for some kind of hope. 
We also found out that our worker that comes 4 days of the week can no longer work for us, so it’s back to not knowing who will come the next day except for Tuesdays. Ugh!!
Ray et al

TW ER and Medical

TW Medical

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So, we couldn’t see our primary care provider until April 2nd, and we suspected we had Thrush. We couldn’t use our local urgent care either as we had to be with that specific medical group with primary care and we are not. Plus, our insurance doesn’t cover that urgent care anyway, so we ended up going to the ER. I know, I know, thrush isn’t considered a life-threatening emergency, but we really didn’t have any other options. We also tried to ask about nutrition, figured it was worth a shot, but the doctor, though sympathetic to our story, couldn’t do anything. She was really nice and listend to us talk, and she had a good bedside manner. We got there at around 7 and waited for about 5 hours before being seen. Needless to say, our joints were screaming by the time we got a room. They apologized for the long wait and said that a lot of people had been coming in sick and that it had been that way for the past month.

I finally got out of there around midnight!! And I tried to call the cab company I usually use, and they didn’t answer at all. I called them 9 times!! And finally security called another company, and it turns out, they were even cheaper than the other one that I used. So it all worked out, and the doctor gave me a prescription liquid medication/mouthwash that I have to swish three times a day. So, all-in-all it was an interesting, but very very long day.

Ray

why?

Hello everyone,

So, I’m just wondering why we have to have the issues we do with our stomach. I hate not being able to eat a lot of foods. It sucks. I’m sitting here now drinking a protein shake because food is just to much right now. I’m sitting in the library in our apartment building wondering why we had to go through trauma and why we got stuck with incurable diseases. This just sucks. I hate being in pain all the time. I hate not being able to type very well as a result of this. 

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

results of gastric emptying study

I just got the results of my gastric emptying study, and after 240 minutes or 4 hours, I had 82% food contents left in my stomach. I’m kind of shocked!! So, I have severe gastroparesis.

Ray