Hi! I’m Melanie. Ive has symptoms of AS as far back as I can remember (Im 41 now). I was diagnosed at 27, though at that point it was just attacking my eyes (anterior uvitis).
When I hit 30, a month after we sent our paperwork to China for baby #1, I had my first flare where it was in my spine. I think they just put me on NSAIDS that round.
All was quiet for a couple years, until we moved to Austin. The month we moved into our house I was hit with a flare that put me on the ground literally. Baby #1 was still tiny (age 2) and I needed to be able to interact and play as best I could. We made it through that with lots of “trot little horsey” & “rocket” things, I could do while laying on my back, or lots of coloring.
A short time after that we sent off paperwork for baby #2. She would change my life… Disease wise for the worse, from the stress of having a raging child, and personally for the Best, I’ve learned sooo much from having a child with Aspergers. Learned to totally embrace neural-diversity! So i have an Artistic, Aspie, Computer guy & me <-embrace the crazy.
So we are all learning together on this path AS is taking me. Hubby still struggles with the changes he’s seen in my ability to do things and the fact my endurance is definitely not what it use to be. Prime example…on vacation w/ MIL, I’m being dragged everywhere, not eating but one or two meals a day and yesterday I crashed. The ugly came out and I’m not moving today. *wicked grin*
I’ve been through all the biologics, they no longer work. Humira left me cold sensitive and allergic to gold. My only prescription meds are Cymbalta & Nuvigil, for the Myofacial pain. The rest are anti-inflammatory herbs, fish oil & vitamins. Plus, stretching & exercise. I refuse to allow the AS to dictate how I live my life, though I know there are energy limitations, so I try to budget well. When I have a ton of energy Im known to go, go, go, then crash!
The HLB-A27 gene runs in my birth family. My birth mom & females in her family have colitis. I’m the only one with AS. For all the issues having AS, Im thankful I have it and not the other!
“Chaos! Panic! Disaster!! (My work here is done)”
Texas United States of America