Hi There - This is My Story
Wow. I am not sure where to even begin. I’ve been “lurking” on here for some time. Gaining confidence to post & make my story public knowledge. So I’ll just start, and try to make sense of it all.
Living with multiple diagnoses
Hindsight, I had signs & symptoms going back to junior high at least (I’m almost 48). When I was in high school I got mono, missed school for the required 6 weeks, and never really honestly ever had full strength after that. The major back issues started my freshmen year in high school (around 85-86). I was in sooo much pain trying to walk, sit, etc there was no relief.
X-rays confirmed then that had what they were calling “rigid spine”. I had extra fsfvertebrae, and the bottom two had fused together. During this time they said no more physical activity for me, no PE or athletic classes, or marching bad. Things eventually calmed down back wise, I just always had my physical limitations. However, my family ALWAYS blamed it on my weight. If I felt bad, it was because of my weight. If I had a hard time moving around, it was because of my weight. You get the idea.
Go to college, experiencing new symptoms
It wasn’t until I was in college that other/different symptoms started showing more. Fevers, which my mom to this day still says I’m nuts and that I don’t have a fever. You know how it is though! Even the slightest, slightest fever can make you feel like crap.
I was working as a respiratory therapist and got SUPER sick. My sides were killing me - not my back as much- but sides. The Dr sent me for blood work and kidney scans. My sedimentation rate was off (first clue of autoimmune). I know the Dr was worried. The only time in my whole life I remember a Dr calling to check on me! Not his nurse, not the receptionist, but him! I was super sick for a couple of weeks. It finally passed (again). Life went on. I didn’t follow up with blood work I was supposed to. Bad Pudge!
Currently seeing a specialist I don't like
This went on a couple more times, same scenario. Same blood results that I never took the next step on. Finally about 8 years ago, my primary sent me to a specialist. At first for a long while, she kept saying I had RA. As time has gone on and more testing and more problems, it has evolved into psoriatic arthritis. I cannot tell you which is worse. Psoriatic arthritis or AS.
They each play they own part. As of the past couple of years, my joints swelling have caused more issues, neck and upper back pain (holy hell pain), extreme fatigue, and the list goes on. My current autoimmune specialist, I seriously cannot stand. Her bedside manner is the worst!!! Last time I was there I voiced a concern about having more and more difficulty breathing. To wit, she basically told me nothing and when it gets worse SHE will let me know. I’m telling her NOW it’s getting worse! I could go on & on about this lady. I won’t. So motto bore to death I’ll stop for now.
My current symptoms and medications
My current symptoms are:
- Neck pain/mid back/lumbar
- Limited mobility
- Muscle, joint, and bone pain
- Ocular migraines
- Worsening vision
- Tingling/numb mouth
- Bladder leakage
- Spastic/muscle /jerking spasms
- Difficulty walking
My current meds are:
- Cocentyx 150 mg once month
- Gabapentin 600 TID
- NARCO 10/325 q4 during day
- Belbuca 150mcg every 12 hours
There are others I’m supposed to and don’t for the migraines-it’s too much. These abide are my necessities.
It's not perfect, but I'm feeling better
I’m sure I’ll have more to say. These days I’m feeling some better with the Belbuca - meaning I’m not spending every non-working moment in bed. Is it perfect? No. But until I find the right doctor I don’t think there is a perfect way.
Do you use the word disability to describe your AS?