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

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

appeal letter from HFS

So I got a letter in the mail from HFS saying I had an appeal on March 3rd at 10 AM and if I didn’t answer the phone, the appeal would be dismissed. Megan doesn’t know why we got this letter as the appeal they filed was with Morgan County, not with HFS. I swear if HFS screws this up, I could scream. I think I’ve found a place that will accept me even if we have to get a feeding tube. It’s called the Emily Program in Minnesota. They were very understanding about the gastroparesis. They have to talk to their clinical team to see if they can accommodate me. I really hope they can. So I’m talking with Megan today at 2, and hope we can get things figured out, because I’m thoroughly confused!!!

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

So, I was diagnosed with H-pylori. I have to start a two week course of antibiotics which I’m really not looking forward to. They had to switch one of the anabiotic‘s to use, because of an allergy. They also had to get prior authorization from my insurance for the one that they had to switch to. I have to take them four times a day, and one of them I have to take two tablets of.

Trigger warning medical

TW medical . . . . . . . So, I spoke to Alsana today, and they do not take people with feeding tubes. They said if i got a feeding tube, I would need a higher level of care. I also spoke to Eating Recovery Center, and they said that they do feeding tubes on a short-term basis. So, basically, if I needed a feeding tube long-term because of gastroparesis, no place would accept me. So once again, we don’t fit into a box of criteria. So why even try to get into treatment? Also, Medicaid is coming up with a list of places they believe will meet my needs, and they are giving that to Meridian next week, so we don’t even get a choice in the places they choose. Everything just feels out of my control!!! Eating disorder programs don’t understand chronic illness, and I was even told by Alsana that in eating disorder treatment programs, you have to eat food, and if I went there, they would need a menu of foods from my GI team that I could eat, because i couldn’t have a tube during programming. The thing is, I can’t take the only motility med they prescribe which is Reglin. She also said that people on feeding tubes are just existing, not living. I’m half tempted to ask Megan to stop pursuing the eating disorder treatment. 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

caseworker leaving TW maybe? food

TW just in case food…

Hi everyone,
So our caseworker Sarah is leaving her job. She is going to be a care-coordinator for Meridian. This makes us very very sad. We will miss her. We also got hooked up with another person from Healthy Jacksonville. They’re going to try and get us a nurse during the afternoon to monitor our vitals, but there was a big emphasis on meals. The lady asked me how much weight i needed to gain, and then proceeded to talk about BMI, and I told her that BMI was aload of crap. I told her it didn’t determine a person’s health. I guess now they’re going to motitor how much we’re eating… They don’t understand that there are other physical issues going on besides the eating disorder. This is all so complicated. 
Ray