I am an untreated face of Ankylosing Spondylitis. I lost my Rheumatologist & Enbrel in 2011. Lost all pain management 2 years ago. I as a single mom with 2 small daughters that fell thru the cracks of the system no matter how loud & hard I fought to not be invisible. I was diagnosed in 2009. My oldest daughter was 3 months….my back literally couldn’t hold my torso & newborn in place long enough for a bottle. At that point diagnosis (due to Uncle previously diagnosed) & treatment with Enbrel. Pain medication also. I was also diagnosed with Fibromyalgia. A year and a half later I found myself finding refuge from Domestic Violence….shelter….then Public Housing, Food Stamps, Medicaid, TANF….it was a whole new world to me. I always worked but couldn’t any longer. Who knew that all other Rheumatologist’s in the Austin, TX area were full of their Medicaid patient quota & would not take any new patients on. This continued for the next 5 years. I self medicated as best I could and focused on my Spiritual Wellbeing, also Bipolar 1 & high Anxiety I lived with. Studied & graduated a 9 month college program…I didn’t feel I would survive but my Mental State of Being counted on it. Nine months ago I had two falls, one on each hip. The A.S. is spiraling down in the backdrop however it wasn’t my focus. After it taking 6 months for me to walk again, diagnosed with Costrochondritis at the Heart Hospital I start passing out several times a week. My Husband notices my heart slowing, circulation not moving well, top of spine is curving differently, tailbone is protruding causing any other obstacle I was lacking and developing all bad signs for serious kidney issues & something looking like Crohns. During that while trying to be great parents, sustain a family (let alone saving my life every other day), my Husband couldn’t work, we put the pieces together & he began holistically treating me. We live in the projects, I had no idea how he protected us from it but he was taken to jail February 4. If I could’ve gotten papers a few days sooner it’d be cleared up & he’d be home. But no, my flares are not cooperating with all the deadlines. I’ve lost my Food Stamps, Medicaid, TANF, possibility of home health (they didn’t have any available workers anyway) and am about to be evicted due to inability to pay maintenance fee’s because I couldn’t use a plunger. Agencies are asking me why isn’t Adult Protective Services doing anything? I’m begging for bond release because he is my caregiver. I partially feel I might be closer to death. I do have a motorized scooter to get around. There’s been a significant decrease in how my spine can/can’t bend to compensate a bump from driveway or pebble. I’m at my max of pillows that will fit…the pain & hardness that prevails the layers are increasingly prominent. However, for the last 5 years everything’s fallen in place right in time. I’ve rewired my brain to believe that with unwavering sureness. Stress is my biggest, most severe flare up trigger. Being my own advocate would be recipe for the apocalypse. All I know in this moment, I will gladly cut my quantity of time off for a smaller quality of time with Best Friend, Soul Mate of a Husband home and maybe perhaps Medical Marijuana. I stay in my moment despite of the above mostly filled in peace, laughter, joy & gratitude. The best I can do in this moment is being oh so thankful for a little rest before waking my daughter up for school.
35 years old
Texas, United States of America