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Hi, my name is WhirlingFish1221. I'm here because
Hey Mighties! I’m coming back. Happy 2023! I have some news to share about how my 2022 ended and how 2023 is my year of taking better care of myself. Stay tuned for a published story on life after life support. Are there any Mighties who live with a G-tube or Peg for feeding? #CheckInWithMe #MightyTogether #ChronicIllness #FeedingTube #Gtube #Dysphasia
Just over six years ago I was diagnosed with dysphasia and what was suspected to be an Esophagogastric junction Outflow Obstruction. Sadly this progressed and worsened and I was eventually diagnosed and confirmed to have #Achalasia . Food, eating out, grilling out and picnics were a pleasure. Events that would brighten my day, week or month. But with the progression of the disease, the thought food and struggling to eat caused pain. All food was then ground up and put in the blender for swallowing. Dilations worked but were only temporary and that is when the #Depression really kicked in. This week I “celebrated” the 4 years anniversary of my heller myotomy. Over time th swallowing issues are back and now is the depression. I know it could be so much worse like others but things just hit me today and I needed to vent.
My apologies. Have a blessed and positive day
Literally in so many ways! I have been on a desperate quest for a diagnosis for 10 years now. 12 years ago I had my first daughter and I started feeling off. I went to see my OBGYN for a pap and to talk about depression. I refused anti depressants because I thought maybe birth control would help and it was situational/ hormonal. I had just had a child as a single mother at 19! Who wouldn’t be overwhelmed! Then I got an abnormal pap. She ended up removing the cell dysphasia and the year following my pap was normal. Then for the next years to follow symptoms became full body. I was diagnosed with fibromyalgia in 2011. Today I have numberous full body symptoms and now head aches dizziness and shortness of breath. Now presumably Rheumatoid Arthritis and Lupus. I have my very long awaited appointment with a Rheumatologist an hour and a half away from home. After waiting for referral after referral, 3 denials! (Thanks state insurance) Finally I will be seen next week!
But, a week ago I had an ultrasound of my throat for my enlarged thyroid... nodules all over... one of which fairly large on the right of my tracea with high suspicion.
I am living under a dark cloud of fear right now as my most unbearable pain is bone pain, every pain makes me scared that for the last 10 years there was something missed!
I don’t have the support I need to badly and I’m finding my self in the darkest place.
My husband of 6 years lost his father to cancer three years ago.
When he heard the possibility of me having the c word, he completely shut me out.
Today he told me he doesn’t know if he wants to be with me anymore.
We just lost our home to a severe mold infestation. We lived in that mess for 5 years and we reluctantly moved into a rental when he noticed how sick I was falling!
Now after every bump in the road you can imagine he’s just to tired to go thru this with me anymore. With all of my anxiety, depression, OCD and what ever the hell is causing my pain and unbearable symptoms... makes me an unlovable person I guess!
I’m so broken and lost and I just don’t know what is wrong with me!?
Today after two years trying to find a cause for extreme fatigue cognitive changes, speech,muscle spasms, dysphasia, and occasional inability to walk along w loss of muscle strength and feeling my doc decided this is the diagnosis in the absence of any other diagnosis that can be made. I’m frustrated at no treatment and curious what everyone else has tried?
It’s been a while and my symptoms come and go but a couple days ago I was admitted to the hospital with dysphasia and speech therapy says it’s spasticity in my neck and vocal cords. I’m home now on a liquid diet using thickeners for food. Theee years, still no diagnosis or treatment but slowly losing myself. Frustrating.
So I saw that the CARES Act passed.
I'm scared though I'll lose accomodations from both my college dual credit side and high school side. I'm also scared College Board will take away my accomodations for the already altered test (which I'm scared I'll fail the first year they offer the course at my school because it's ONLY an essay and I have dysgraphia and I already had enough problems with AP tests). I'm on a 504 plan and I get this is probably the last worry that some people have, but I want to graduate as expected this upcoming May from high school and go to college.
If someone could explain how the Act impacts me as a student, that would be great. I mainly needed it out and need help to know that I'm not alone in education being really scary right now