Ofc featuring my kitty Agony🍓
It was supposed to be here May 26 so it’s a little late💀
but finally after all the complications she’s here and it’s so exciting, I’m no longer stuck in bed 24 hours a day! I absolutely love the lavender/lilac color, and the power assist wheels are fun to navigate XD
I (20F 5’1) talked to my pcp who sent me to a nutritionist. I am diagnosed with hEDS, POTS, Fibromyalgia, Autism+ARFID, and they suspect MCAS and Gastroparesis but I’m still in testing for those two.
My nutritionist is extremely concerned about my daily intake (less than 500calories and 2-6oz of fluid a day is all my body can manage) but she said she doesn’t have the authority to order any tests or tubes but she does think it’s something I need, GJ is probably the best option because of my extreme sensory issues anything on my face absolutely will be rejected. I sent a message via MyChart of the note from the nutritionist recommending TPN or GJ to the person who did my endoscopy and is going to do my colonoscopy next month- he was the only person listed under GI but I’m not sure if he was actually the right person to contact? Ik it’s the weekend rn and I won’t hear anything back yet for some days. Right now (the last week but esp last 3 days) I’m struggling even more with any oral intake everything keeps coming back up and idk what to do- I’m so weak. Whenever I go to the hospital because I feel dehydrated/weak/etc they say I am hydrated (even though I’ve had 12oz of fluid at most for the entire week and my urine is close to red in color) and I’m given iv ibuprofen, Tylenol, or Benadryl and sent home. They say “my body is over compensating because of how long I’ve been this way” idek what that means. I’m not sure what my next step should be. Thank you.
I just stumbled across here not fully sure how lol, seems like a sweet community! 🎀
A bit about me and some of my story:
I am Hope, I’m turning 20 tomorrow, am strawberry obsessed 🍓 and I am disabled with a very veryyy long list of medical conditions. So I live with my roommate who cares for me and our two cats: Agony, and Fury (whom I recently found out I’m allergic to and am now taking shots for 🥲 -but it’s worth it because those boys are the highlight of my days) I have no family due to their abusive nature-
last year was one of the hardest years of my life, homeless and disabled and literally dying, I lost my baby due to miscarriage, and all of my belongings. Then I met my now roommate/caretaker who brought me 15 hours away from everything I’ve ever known but a risk I was willing to take. I beyond lucked out and life has been immensely better! I’ve never been truly safe until now. And what’s even better is I’m finally getting a fully custom wheelchair 🦽 covered by insurance which means no more crawling and dragging myself around my home!
It’s lovely to (hopefully) meet you all!
I was taking pics of my Jasmine cosplay and accidentally got this 🥲