I’m new here!
Hi, my name is GiusianaLina. I'm here because I have ehlers danlos syndrome, CRPS, dysautonomia and suspected gastroparesis and MCAS
#MightyTogether #Anxiety #Depression #Migraine #PTSD #Fibromyalgia #ADHD #Grief
Scooter or Electric Wheelchair?
Organ donation, body donation or neither?
If you could choose where and how you pass,
where would it be and how?
If you could choose where and how you pass where would it be and how?
A Great Day!
A bit of a struggle
An art piece I did during an MCAS flare a few months back. #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Art
18 months later as a tubie
I know it has been a while since I last updated y'all on my progress with living with a GJ tube. It has been an experience! I've had to 9 tube replacements due to my tube moving, twisting and countless clogs. After so many issues, my gastrointestinal surgeon felt that I needed better assistance from the Internal Radiation team or IR for short. With the IR team, instead of the GJ tube being replaced through endoscopy and replace while I am awake but giving something for pain. The first time I had it done, I was very nervous because of knowing I would be awake for it. I was able to watch the team set up the room with the monitors and the x-ray machine over me so they can see where to go. I have a completely different tube than I had from 11 months ago post. The photo above is me now. I can say I have had only 2 clogs with this new tube and it was so easy to unclog with a can of Coke. I'm still adjusting to live with having this GJ tube forever but I'm being patient with myself during the process.
#EhlersDanlosSyndrome #Gastroparesis #GJtube #FeedingTube #LifeasanEDSerwomanofcolor #MastCellActivationDisorder #posturalothostatictachycardiasyndrome
Appreciation for Every Moment
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