more good news!!!!

Hi everyone,So, we skipped therapy today because of exhaustion. 
We are getting our supplies delivered tomorrow I think for the IV fluids. Yay!! So excited!!! Can’t wait. How is everyohe?
Ray

alergic to another dressing

Hello everyone,

So, I went on Tuesday to get my IV fluids infusion. Well, we are alergic to the huge tegaderm dressing they used. apparently, they didn’t use the right dressing. So, yesterday, we went to get tthem again, and they changed the dressing. So thankful they did that. My skin feels a lot better. Thank goodness!!!

Ray

IV fluids and POTS

So, I had my appointment with the PA at our POTS doctor’s office yesterday through telehealth. She spoke to my doctor, and they are going to give me IV fluids every other day for 8 weeks. Trying to decide if I should leave my port accessed during the week to lower the risk of infection from being accessed and deaccessed multiple times a week. I’m just confused as to why he would say I can have IV fluids every other day for 8 weeks, and then take it away if it’s working? I’m completely NPO in terms of fluids because whatever I do drink or eat is drainable and doesn’t digest anyway. I’m glad I’m getting more fluids, but why do they have to give it to me and then take it away? I’m feeding tube dependent. I have gastroparesis as well. Sorry for venting…

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

chronic illness flare

Nausea… Go away!!! I just want sleep!!! Having a GP and POTS and EDS flare!!! What do you do for breakthrough nausea? Already took my orally decentigrating tablet, and can’t take another one for 5 more hours!! My BP is 88/48 and when I stand, my HR goes from 79 to 128. Ugh!!! How do you get your docs to give you IV Zofran? Ray

medical frustrations with fluids

So, I have POTS and gastroparesis and EDS. I have a port. My POTS doctor is only willing to give me 2 L a week of IV fluids for three weeks. I’m tube dependent as well. I also take Lenzess and so lose fluids there as well. If I didn’t take it though, I would be constipated. I went to my urogynocology doctor for pelvic floor biofeedback therapy, and my urine was a dark yellow color. So, I’m dehydrated. I can’t get more fluids through my tube than I’m already getting. He will not recommend any more fluids than what he is going to give me. I’m completely lost, because I keep telling him that I only get 1228 MG of sodium through my formula a day. I can’t mix salt or add anything else to my feeds because It can mess with how the formula is absorbed in the small intestines. If I don’t get more fluids after the three weeks, I will keep ending up in the hospital for dehydration. So, what’s the point of me having this port then? I’m just at a loss. Any advice? The POTS doctor is saying that hopefully my body will adjust. They are also leaving it to my GI doctors to manage the nutrition and hydration stuff, but the GI doctors don’t specialize in POTS… ugh!!!

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

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

Spoke to our primary care providers office yesterday trigger warning medical

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

chronic pain is my companion Trigger warning

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

eating issues and medical stuff TW

Trigger warning: eating and digestive issues and chronic pain and medical stufft
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Hello everyone,
so we are really struggling with eating because of pain from eating because the food just sits there and doesn’t move for a while. Also been struggling with heart rate and blood pressure issues. I do think this is related to EDS (Ehlers’ Danlos Syndrome). All alters as far as i know have agreed to try with eating, but the physical stuff is making it really hard. We haven’t used laxatives in a few months which is good, but now we are finding it hard to even try a lot with eating because of the physical pain. The fatigue is a lot to handle. Heart rate the other day went from 82 to 132 from laying to standing. I do understand that there are mental health things going on, but there are also physical things going on as well which complicate the mental health stuff. I don’t even know where i was going with all this, except to say that we are very frustrated. The Reglin isn’t working anymore either. Ugh!! Blood pressure was 89/46 the other morning. Our new worker is recovering from anorexia, and she doesn’t understand all the physical stuff we have going on, so when she asks us if we’re hungry, and we say no, she thinks it’s because of the eating disorder, but it’ really because we know how much pain eating causes us. I wanted to be honest about this with people and hope you understand that there is more to this eating issue than just an eating disorder. We’re just really complex patients. Hoping the new PCP can help figure some of this out. She is referring us for genetic testing. I’m just at a complete loss.
Ray

Productive electrophysiologist appointment yay!

so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray