Chronic-Jessii @chronic-jessii - Tumblr Blog

My life:

GJ tube and a Peg tube with an ileostomy for good measure

Description I'm standing showing my GJ & Peg tubes and ileostomy bag

#chronically ill #chronic illness #feeding tube #ehlers danlos syndrome #gj tube #ileostomy #ostomate #peg tube

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Guess who was well enough to getaway for a few days...ME. It was bit cold and rainy in the mountains, but I tolerated all pretty good. Which is evident by the smile.

Description: Jessii in her wheelchair, smiling

#wheelchair #chronic illness #chronically ill #feeding tube #ehlers danlos syndrome #gj tube #ileostomy #ostomate #pots syndrome #smiling #short getaway #vacation

Hope you are having a great day 💌

Thanks, pretty good

how was going through airport security with your feeding pump and formula bottles? i’ve only been on a trip once where i needed to fly since i’ve had a feeding tube and it took over thirty minutes to get through because they had to drug test my formula bottles and the infinity bags (they even were going to open all of them before i could explain that they can’t be opened or else i won’t be able to get my nutrition)

Thanks for the question. When I traveled, it was by train and not as restrictive. I've never flown since having a tube, etc. I've heard of the nightmares of flying and using a wheelchair. Train for me wasn't bad. Staff was friendly and helpful. I checked my baggage for the baggage car and kept a backpack with me for extra supplies if needed.

#chronic illness #chronically ill #disabled travel #feeding tube #gj tube #medicalsupplies #ask #ask me anything

disabledprincesses

Why is every chronic illness buy one get seven free??

#chronically ill #chronic illness #so truee #whyy

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Not a pleasant sight. From my vacation to Austria and dealing with a UTI and just feeling like garbage. I was soon in the hospital after this photo

#chronic illness #chronically ill #ehlers danlos syndrome #feeding tube #gj tube #uti #urinary tract infection #feeling bad #feeding sick #out of spoons #spoonie

so I finally got scheduled for a gastric emptying test!! it's on friday and I'm realizing that I don't know a ton about what will happen. any tips?

The biggest problem is laying on uncomfortable x-ray table and it is a bit time consuming, but otherwise it isn't too bad

Traveling via train to Austria with some friends and so far it's been pleasant. Crew was very helpful and careful with my wheelchair. So far the only awkward thing was finding something to hang my feed pump on, it's usually in a backpack attached to my wheelchair. Biggest drawback to traveling when you're disabled is the extra bag for supplies.

#chronic illness #chronically ill #ehlers danlos syndrome #feeding tube #ileostomy #ostomate #gj tube #ostomy bag #ostomy #pots syndrome #traveling to Austria #traveling with friends

Bathroom selfie with a friend while traveling to Austria.

Description: with a friend in a bathroom and decided a selfie was needed

#chronic illness #chronically ill #bathroom selfie #traveling #friends

Decided to take a break on a park bench with my dog by my side.

Description: rising on a park bench enjoying the fresh air

#wheelchair #chronic illness #chronically ill #ehlers danlos syndrome #feeding tube #park bench #taking a break #dog by my side

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Found my stuffed zebra. Zebra power

#chronic illness #chronically ill #ehlers danlos syndrome #pots syndrome #zebra strong

fibro-memes

dhddmods

"You have too many disabilities, you must be faking"

Hate to break it to you but there is something called Genetics that can lead to a cluster of conditions occurring (ie; genetic syndromes, parents with differing genetic conditions, etc.).

Also hate to break it to you but there is another thing called Getting Violently Hate Crimed which does, in fact, usually fuck up the body and mind of a small child👍

Those two things combined would, expectedly, mean there is a Lot Going On physically and mentally.

chronic-jessii

I must be....SMH

I thought it would be cool to have a feeding tube, ostomy, catheters and use a wheelchair

#ableism #disabilities #disabled #disability #ehlers danlos syndrome #pots syndrome #tubie #feeding tube #ostomate #ostomy bag #gj tube #ileostomy #chronically ill

Who needs an alarm clock, when you can have an ostomy bag on the verge of bursting.

#chronic illness #ileostomy #ostomy #ostomy bag #ostomate #protectomy

candyapplewinx

Disabled is not a bad word 💖

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fibro-memes

chronic-jessii

Some days

theseamonsieur

One thing I don’t think people realize is that asking someone what the cause of a scar, use of a mobility aid, so on, is asking after medical history. It is a medical event that happened to us. That’s personal. You can politely ask, but you have to be prepared to be told it’s none of your business. Because it’s not. It could’ve been a severely traumatic incident, something embarrassing, something mundane that just happened one day, you don’t know. I can’t count the people who’ve gotten offended or continually pestered me because I didn’t want to tell them personal information. If I point out that what they were asking for is my medical history, they just call me ridiculous. I’ve even been cursed at by a stranger for not telling her even though we’d never met and she asked out of the blue. We don’t owe explanations and please don’t ask randomly.

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