Finally getting home health

Hello everyone,

So after months of waiting, we are finally getting home health services starting this coming Thursday. The nurse will be coming to change the port needle and dressing so that we don’t have to go to the clinic and face never ending fatigue. We are also in the process of trying to get a custom wheelchair for our postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. I am also in the process of trying to discuss with my dysautonomia specialist the benefits of IV hydration and why it needs to continue and possibly be increased. We cannot get enough fluids through the feeding tube alone let alone sodium as well. Hoping all is well with everyone else, and have a great day. Always remember live to inspire.

I am not disabled, I am differently abled,

Ray

Flare-up

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.

feeling sad

hi its emilee. im 11. im sad because of the body being in pain. i wish i could have a day without pain. my hips hurt. my tummy hurts to. maybe its because im anxious. i dont know. i just hate all this tubing. i feel like im in a hospital. Little Em, 5 is sad to. shes my alter. es a part of me. i guess lots of us have parts of our own. this is abbl so confusing. im overwhelmed. any advice?
Emilee 11

medical TW feeding tube formula issues and dissociation

TW medical and dissociation
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hi everyone,
we are struggling today. we are bloated because of our formula. we’ve been switching like crazy. Time loss and PTSAID is at an all-time-high. We are not dissociating when we are actually out as we started a new med called Neltrexone. It helps with chronic pain and staying more present when each of us is out. we have a chronic ear infection that we have aro be on eardrops for. Just stressed. Our dietitian isn’t listening to us either. She wants us to vent our G-tube three times a day. we don’t want to be on TPN…
Nicole 20

food on my mind ⠞⠙

Hi everyone, I’m really struggling today. I miss food so much today, but I’m dealing with bloating today because of my gastroparesis. I love food, but it doesn’t love me. I just hate this dicotomy… I just want to be normal.

Ray

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