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

an email I sent my dietitian about formula

Hello Dustin,So, when we switched from 4 cartons to 5, they didn’t send enough cartons. I called the emergency person yesterday, and they said that technically, it wasn’t an emergency because I still had enough formula for overnight. I have 3 cartons for today and no more after that. I’ve been running liquid IV since yesterday afternoon when my cartons for the morning were finished. They sent me a total of 150 cartons with the 69 that they had sent when I got home from the hospital, and the 81 that they sent when we switched to the 5 cartons a day. I had already started to use 5 cartons a day from the 69 that I first got. The lady on the phone was blaming me for being out of formula, and she said that we could get the branch to deliver some if they had my formula in stock. She then said that if this happened again, that we would have to pay a $150 delivery fee. I’m on a fixed income… I just felt attacked when I called asking for help. Maybe not attacked, but blamed. Thanks for reading.
Ray

reflections for this morning

So, these are some of my reflections for this morning as I sit here listening to music. 

God, are you there? I ask this question all the time. As I sit here thinking about all the chronic illnesses I’ve been dealt. I could be angry and resentful that God would let this happen to me, or I could see that he made me like this to help other people and to see that maybe he wants to use me to help others, because after all, my story does matter and i matter.

Why did I have to go through trauma and be diagnosed with DID? Well, I can tell you this, I have DID because it makes me stronger and each of my alters are a testament to that strength. They each are a piece of the puzzle that may at times seem complicated and hard to solve, but it is a beautiful masterpiece made in God’s incomprehensible beauty and wisdom. So, on the hard days when trauma and flashbacks are overtaking me, I remember that I am made in His image. He decides the plans for my life, and nothing happens without a reason, whether that be to teach me a lesson, or whether it be for me to gain more wisdom, there is a reason for everything. If you are going through a hard time, God wants you to know that he’s not finished with you yet. He has so much more planned for you, more than you will ever comprehend or know. Much love,

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

things I don’t take or granted because of chronic illness

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