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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.

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Got my tube changed

TW medical

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Hi everyone, 
So, today, we got our feeding tube changed. We had to go to Chicago to get this done. It only took like 20 minutes. We were high on dilodid. It was quite hilarious. We are on our way home now. 
Ray 
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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

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endocronology appointment

So, I went to the endocronologist, and even though my dexa scan showed severe osteoporosis, she said that she didn’t think it was true osteoporosis because I’m not a post-menapausal woman. She said they listed T-scores and not Z-scores. She basically said that she couldn’t help me because my case wasn’t a true endocronology case and that I should look for a genetic reason for it. She also said that it could be caused by my gastroparesis or just be a resulq that of my EDS. She isn’t willing to give me the meds for osteoporosis until I can get a definiative answer on whether this is osteoporosis. She is referring every to an endocronologist who specializes in bone health. She said the only lab that was off was my vitamin D. I’m just so confused….

Raych;

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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!

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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

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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