Medical ⠠⠥⠏⠙⠁⠞⠑

Hi everyone,
So, I’m having trouble tolerating my formula again… Not sure what to do. I can’t add the water to my formula that I need, so I’m missing out on a liter of fluids that I would otherwise be getting. I’ve been struggling with my port to. I had to de-access it yesterday because of an alergic reaction to a dressing. I also found out that I’m alergic to the IV iron that I was getting. It was seems my body is reacting to everything right now. When I took off the dressing, I had hives on my skin. I’m just done with reactions!

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

the hand a story I found

The Hand

Thanksgiving Day was near. The first grade teacher gave her class a fun assignment — to draw a picture of something for which they were thankful.

Most of the class might be considered economically disadvantaged, but still many would celebrate the holiday with turkey and other traditional goodies of the season. These, the teacher thought, would be the subjects of most of her student’s art. And they were.

But Douglas made a different kind of picture. Douglas was a different kind of boy. He was the teacher’s true child of misery, frail and unhappy. As other children played at recess, Douglas was likely to stand close by her side. One could only guess at the pain Douglas felt behind those sad eyes.

Yes, his picture was different. When asked to draw a picture of something for which he was thankful, he drew a hand. Nothing else. Just an empty hand.

His abstract image captured the imagination of his peers. Whose hand could it be? One child guessed it was the hand of a farmer, because farmers raise turkeys. Another suggested a police officer, because the police protect and care for people. Still others guessed it was the hand of God, for God feeds us. And so the discussion went — until the teacher almost forgot the young artist himself.

When the children had gone on to other assignments, she paused at Douglas’ desk, bent down, and asked him whose hand it was.

The little boy looked away and murmured, "It’s yours, teacher."

She recalled the times she had taken his hand and walked with him here or there, as she had the other students. How often had she said, "Take my hand, Douglas, we’ll go outside." Or, "Let me show you how to hold your pencil." Or, "Let’s do this together." Douglas was most thankful for his teacher’s hand.

Brushing aside a tear, she went on with her work.

The story speaks of more than thankfulness. It says something about teachers teaching and parents parenting and friends showing friendship, and how much it means to the Douglases of the world. They might not always say thanks, but they’ll remember the hand that reaches out.

"Though he stumble, he will not fall, for the Lord upholds him with his hand. Psalm 37:24

"My soul clings to you; your right hand upholds me. Psalm 63:8

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

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

Motility issuesMotility issues

Found out I have intestinal dysmotility. I still have contrast in my small intestines from getting my tube placed last week! I also have contrast in my large intestines as well as a lot of stool. So, they cannot tell if I’m not tolerating the formula or it’s just because of my slow intestines. I’m kind of frustrated by this point but at least, they are placing a midline. I was told today that they were supposed to make a decision on whether I went on TPN or just got a port and went with a different formula, but now I have to wait until Wednesday or Thursday so they can clear out my bowels and then they can make a decision. I didn’t realize how slow my intestines were, but I can say I’m not too surprised because my stomach is almost paralyzed. This whole process is just so frustrating, and I just wish someone was here with me. I am here by myself dealing with all of this. Just feeling alone.

Feeding tube frustrations at the hospital

Hello everyone,
So, I went to get my GJ tube button placed today, and they put a J tube in my GJ stoma!!!! Ir makde a huge mistake. They didn’t even give us an extension for the tube, so we can’t even do our meds!!!! Hoping this gets fixed this morning!!! So frustrated.
Ray