3 ms·
My wife appears to be incredibly fit and she is. She's able bodied, thin but not sickly so and strong. She has great muscle definition. Her skin looks healthy.
by igetspam 6y ago
My wife appears to be incredibly fit and she is. She's able bodied, thin but not sickly so and strong. She has great muscle definition. Her skin looks healthy. She is often taken for being a decade or more younger than she actually is.
She spends half her week pleading with medical staff or arguing with insurance about why the drugs and procedures shouldn't be denied. Her eyesight is rapidly degenerating. She's has diverticulosis (they told her to lose weight and stop eating meat... she's thin and vegan). A number of her bones have started to fuse and she has acute arthritis in places that seem to show up without warning and were nowhere to be seen on images from less than a year ago. She's im chronic, sometimes debilitating pain. There's no diagnosis and people keep jabbing her with needles based in what appear to be best guesses. She's disabled. She doesn't want a sticker because it's embarrassing and she's worried about people thinking she's abusing the system and vernally (or worse) assaulting her. She'd rather walk the extra distance I'm horrible pain than have to deal with it.
Being "disabled" means lots of things and wears many faces. The stigma sucks.
- sterlind 6y agoSorta sounds like me. I have smooth and young-looking skin, but it's because my collagen is messed up. My joints come apart everywhere in my body, I get woozy from standing or even sitting for long, and I'm developing a host of spinal and nerve problems. I'm expected to need PT, braces and probably more for the rest of my life. But I can walk, and I look young, so I had a hell of a time getting diagnosed. And I felt really guilty about using a disabled parking pass even though I knew I needed it.
- igetspam 6y agoI'm so very sorry for you. It pains me to see her going through this an know it's exponentially worse for her. She can't even hold our toddler and dance with her any more. It's been so long that she doesn't even think to ask. Faddy dances and mommy sings.
- omgwtfbyobbq 6y agoThat sounds awful. My wife has Stills and went through a similar experience before getting a diagnosis. Has she been seen by a rheumatologist? Her symptoms seem vaguely auto-immune/inflammatory. https://rarediseases.org/rare-diseases/reactive-arthritis/ https://rarediseases.org/rare-diseases/reactive-arthritis/
- igetspam 6y agoShe's on her second one. They suspect something auto immune buy all her symptoms are peripherally related to solid indicators. For example, most people might have IBS or chrones but she developed diverticulosis. In the ballpark but not quite right. Edit: something in the RA realm is what they suspect but it's hard to be conclusive because she has symptoms but no markers.
- partyboat1586 6y agoThe bone problems are caused by nutrient deficiencies and inflammation from the digestive issues, correct?
- igetspam 6y agoNot as far as anyone can tell. Everything in her bloodwork comes back perfect. She eats well balanced meals, stays as fit as the pain will let her, doesn't drink much, no drugs that aren't prescriptions because of all this. By all measurements, she's in peak health... you know, except for the debilitating pain, bone fusion, rapid onset arthritis and degenerating vision.