scared
When my dog was still alive, he slowly started having some worrying symptoms - he withdrew, had less stamina, panted and drank a lot. With time, he lost some fur and got a big stomach. I had taken him to a vet and a clinic about it, but no matter what tests they suggested, it was all coming back negative. I helplessly watched as he wasn’t his usual self. One day on the sofa while scrolling online, I found out about Cushing’s Disease. I thought it fit so well, and I asked the vet to test him for that. He reluctantly agreed… and I was right. Finding that out and medicating him gave him 2 more years to live! He acted like he was young again most of the time.
When my symptoms got so bad around February, I assumed either chronic appendicitis or Crohn’s, thinking the latter is probably it. I was right again.
Months of Prednisone for Crohn’s made me finally feel normal in terms of body pain. I could move freely, get up easily, stretch, run and was more flexible. I realized how much joint pain and stiffness I had been in all my life. I just assumed I was a little sensitive or this was muscle tension or sore muscles like everyone has; I used to believe it was an illness, but gave up after rheumatologists couldn’t find anything.
Now off the Prednisone, it came back with a vengeance, worse than before. I was able to get another rheumatologist appointment in November, and I will fight for more this time. I’m not a teen anymore, I’m now 28, and I finally experienced what healthy feels like. I will ask them to test for a specific illness and will not rest until that is ruled out or confirmed.
I fit it pretty well; sacroiliac pain, lower spine pain and between my shoulders, painful joints elsewhere especially base of the thumbs, the inflammatory bowel disease. My grandfather on my mum’s side had Crohn’s, my mum has Rheumatoid Arthritis. Autoimmune runs in this family, and I definitely want to get tested for the HLA-B27 gene. I might guess correctly for the third time now, and I fear it.
The disease I mean is Ankylosing spondylitis, or Bechterew’s disease.
The good thing is, if it’s really that, my current Crohn’s medication also treats this, so I might have a 2 in 1 meds situation (very convenient).
But I’m also really scared. This year is like a bad dream I’m not waking up from. All these years I thought most of my issues were just some temporary things or nothing bad; everything would go away at some point if I just ate right, exercised right, limited stress or took some medication for two weeks. Now I know my body is attacking my intestines, and there’s serious possibilities my vertebrae might fuse one day if my suspicions are true.
I don’t know what to hope for; I don’t want to have it at all, but if I already have the symptoms anyway, it helps having a diagnosis to get it treated and file for accommodations and disability. It’s worse to have symptoms and not know why, but a second life altering diagnosis this year might break me, especially thinking of all these years wasted in pain when both could have been caught at least 10 years earlier.
My girlfriend said it’s like a year of reckoning, finally addressing everything that has been wrong with my body after getting no answers for so long and just winging it, and she’s right. I always pulled through and fought to continue as it is, finished school, kept working, studied through it all because I had no other choice and I wanted to succeed. Now it’s all coming to a head and it seems like I have to sit this one out, and by it, I mean the entire year. All these plans I had to cancel or modify or postpone or suffer during. All this time spent in bed. This sabbatical in my goals and hobbies. Ugh.
Published 20 Sep, 2024, edited 6Â hours, 59Â minutes ago