living life to the fullest with dissociative identity disorder and other mental And physical illnesses
We started taking Suboxone on Tuesday, and we now have swelling in our legs and ankles. We thought it was the fluids or the TPN, but no, it’s the Suboxone. This is frustrating. We are not sure what to do. We are not even sure if the med will continue to be prescribed because our PCP is n’t willing to prescribe it. I’m just at a loss.
Ray
This is mostly going to be a medical update. We had a doctors appointment on Tuesday where our primary care doctor told us that we obsess too much over our conditions, and that if she had it her way, none of her patients would be on pain medication. My palliative care team was trying to get me on Suboxone for pain. It will be a film that goes on the inside of the cheek and absorbs through the skin. My doctor said that she chose not to go through the continuing education course to be able to prescribe the medication. She said that she was going to look us up on TikTok to see what my other personalities had to say. This made us feel very uncomfortable, and our therapist even told us that it was a Hyppa violation for her to do that without asking our permission. So we left that appointment feeling discouraged and defeated. We got home, and apparently our doctor had written a prescription for an EpiPen which we needed because we did not have one. Also, apparently the palliative care doctor ended up prescribing the Suboxone because the social worker and the nurse practitioner had advocated for us in a meeting with him. This was the first time he had ever prescribed this medication, but the nurse practitioner had given him information on how helpful it would be for our conditions. We took the medication and that night into the next morning. We were dry heaving and felt like we were walking on a boat that was on the sea. We were very very dizzy. We had to reschedule our orthopedics appointment for our AFO braces to 9 August. We are going on 3 August to get our feeding tube changed from the GJ button to just a regular G-tube because we don’t really use the J-tube for much of anything because it doesn’t matter which way we take our meds, they either work or don’t work because they either do or don’t get absorbed properly because of the paralysis in our GI system. There are a lot of things we are learning in Therapy. One of the things we are learning is that I, as Ray, do not have a very big range of emotions that I can feel without dissociating. I was frustrated by the whole situation with the doctor and her saying that if she had it her way, none of her patients would be on pain medication, considering we are in palliative care, but Melissa felt the anger and could express it. Wee told our Tpn doctor about how we felt after taking the dose of Suboxone, and he said that possibly the dose was too high. We are going to message the social worker on Monday and ask her if she can ask the palliative care team if we can cut the film in half. Hopefully we can, because that was not a great feeling at all for any of us. The kids were even asking if the medication is supposed to help us not be in pain, why does it make us feel all icky inside. We hope all are well or as well as can be. Sorry we don’t write a lot, but we try to when we can.
Ray.
Having a flare-up of my conditions. My heart rate went from 88 to 120 within 10 seconds of standing. I’ve also had a flare of my gastroparesis. I had some chipss and some coffee yesterday at like 11:jj AM, and at 7:jj PM I was feeling nauseous, and so I vented my stomach, and it all came back, undigested. My joints are also sublaxing because of my EDS. Flares are no fun. Hope everyone is doing ok. Thanks for reading.
Hello everyone,
So, these are the things I have learned not to take for granted because of having chronic illness.
I don’t take for ranted the ability to eat. I would so love to go to a restraint to get something to eat like a chicken sandwich, or that yummy ice cream, or even a soup with potatoes and cream and bacon. But I can’t.
I am stuck with getting my nutrition through a bag and a pump. It’s what keeps me alive.
Ray
Rayette Rucker
World Services for the Blind
Assistive Technology Instructor Online Trainee
Google Voice Number: 3146379985
JAWS 2020 certified
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
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
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
Hi, it’s Miranda. I’m 16. I don’t like being in pain. i hate it so so much. pain makes me feel sick. ugh!!!! why do i have to b in pain?
Miranda
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
my multiple life 