TW medical and trauma
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.
Trigger warning medical not sure……So, yesterday, we called our primary care providers office and asked her for help. We asked if they could place an NJ tube, but she said that she could not do that. She had said we had to wait for the G.I. consult on March 20. She wants us to drink three protein shakes per day diluted with water to make them easier to swallow as well as eating three full-size meals per day. This is nearly impossible. We can barely manage some days to eat some applesauce and some chicken broth. Why can’t we just get help? I also found out why I haven’t been seeing my dietitian. My primary care provider never sent in a referral to her when I switched providers. So I have not seen her since January 7. I called her and asked her for her advice yesterday, and I asked her if she could prescribe a feeding tube, and she said if it was eating disorder related, maybe. She told me to also wait for the G.I. consult. I am just getting so frustrated at this point. I just need nutrition! Dammit!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.
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
Hi, it’s Ray. Here’s our latest YouTube video!
When you have Medicaid and an eating disorder, it is next to impossible to find treatment if treatment is not available in your state. What the people at Medicaid either don’t realize or don’t care about is that 20% of anorexics will die. My insurance company told me that sometimes people died because they don’t cover the services they need when I told them this fact. So I am taking things day by day keeping an eye on my heart rate as sometimes when I walk it goes as low as 46 or even 43 bpm which is not normal for someone who is walking around the store. I just pray every day that my body does not decide to give out before I can be helped to get the treatment I so desperately need. I go to my providers who are scrambling and telling me to go to each other with no result because no one knows what to do to fight the monster that is Medicaid. All I hear from the emergency room is either go out of state for treatment or stay home and die. What is this world coming to? All I know are money hungry insurance companies who don’t care about the person but all they care about is the profit and the money they will save by not paying for someone’s much needed treatment. Actually, they are spending more money on crisis stabilization programs that I keep going in and out of when it would be far cheaper for them to pay for the treatment I need that would also be the most effective. Instead, they are constantly telling me that I need this or that for their appeal process and so we have been waiting for over a year languishing and suffering because they want to find a lower cost medically necessary alternative. I find it interesting that there a denial letter says the services that we are requesting are a non-emergent when in the appeal itself it says if we do not get treatment I am at risk of death. How is that not emergent? And the person who reviews the appeal is a psychiatrist, but do they specialize in eating disorders? The short answer is no. They also say that we need to find treatment at a lower cost medically necessary alternative which by the way is breaking state and federal parity laws. They cannot impose a fail first policy meaning they cannot tell us that we need to complete treatment at a lower level of care and fail first before they will approve a higher level of care. They are hoping that by drawing out this appeals process, we will give up trying, and even though there are some days that yes, we want to do just that, we will not. I just hope our body can hold out. Also, they say if we need immediate treatment to go to the local emergency room, but that is a dangerous thing to say because the local emergency room knows nothing about eating disorder treatment and will give a liter of fluid in one hour which for someone with an eating disorder can kill them. I do not nor will I ever understand the logic of a government insurance, and I almost wonder if this insurance company that is run by the government isn’t put in place to continue ritualistic abuse whose goal was for the person to die which is exactly what will happen if we do not get treatment. Coincidence? I think not. The only thing I wanted for Christmas this year was to get into treatment, but that is not going to happen. At least I will be around people I love. We have a long battle ahead of us, and we just hope that physically we can hold out to see it through.
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, today has been hard. My POTS is flaring up again. I woke up this morning, and I checked my pulse, it was 69. I got up and went to make breakfast. All I did was put it in the microwave. Within 15 minutes of standing, my heart rate was 161. I had woken up at 10:15 am, but by 2, I was tired and had to go to sleep again. I only woke up about an hour ago. POTS is so frustrating to live with. I go to the cardiologist on Monday to get a second oppinion about it. If anyone has any advice on dealing with this condition, please help. I’m taking in extra salt and as much as I can. I also have an eating disorder. Thanks for reading.
So, my primary care provider told me today that I most likely have Ehlers-Danlos syndrome hypermobility type which is a connective tissue disorder that affects the skin and that it is translucent and stretchy, but it also affects the joints because they are hyper mobile and move in ways they shouldn’t causing frequent subluxation and sprains. This along with pots makes for a very difficult time. These are both chronic illnesses. Looking for support in anyway I can get it.