Medical worries

Hello everyone.

I’m struggling with my feeds. I can only do 35ML per hour and my goal was 80. I’m far from that. We found out that it is just my body not tolerating the rate of the formula, not the formula itself. This is frustrating because I don’t want to have to do another admission to get things fixed again. Hoping we can avoid TPN because it has it’s own risks. Hoping I can get some relief soon and that my body will hopefully begin tolerating the formula at a higher rate. Hope everyone is well.

Ray

angry and frustrated

It’s Melissa. I am so angry and frustrated. We were talking to Greg yesterday, and he said what if it’s mind over matter about our medical conditions. It’s not mind over matter! We have legitimate medical conditions but the problem is they are invisible! When will people get it question we live with pain every damn day! No matter what we do, there is no cure for our conditions. No, they are not terminal, but they might as well be! No one can truly understand what we are going through physically unless they’ve been through it themselves, and quite frankly, I wouldn’t wish any of these conditions on anyone, not even my worst enemy! And that’s saying something. Why is life so unfair! And I was just thinking the other day, what are people that knew us from before going to say when we get our wheelchair? They already think we don’t need a personal assistant. We hate invisible illnesses? We hate having them and the judgment of others! Sometimes, I just want to break things! I’m just so angry!
Melissa

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