PsA - My Journey, My Curse, My Blessing

I was about 15 when I started to notice chronic neck pain in conjunction with the chronic headaches I had experienced for years. Being young I paid it no mind. Over the next 10 years I began experiencing debilitating pain in my shoulders and jaw, then my chest, hands, feet, knees, ribs, and hips.

Having acquired a fibromyalgia diagnosis at 19, I pursued relief avenues along this route for years. After becoming a single mom and obtaining a job with benefits 10 years later, I utilized my (finally) acquired health care frequently. Several sequential earaches landed me in my PCP’s office, only to continually discover that my ears were fine, it was the typical inflammation of my TMJ causing the pain. This lead to my PCP refer me to a local rheumatologist who specialized in fibro. At my intake appointment, the rheumatologist informed me that not only did I have fibro, but PsA as well. My relief was profound, as for years I have stated that I knew there was more to my issues, and finally, I had an answer. I thought my battle was almost won, but, little be-known to me, it had barely just begun.

I spent the next year trying failed medications per insurance regulations. I finally found a balance that worked for me. Then, the government reformed prescription laws preventing me from getting mine. After 3 months of searching for a qualifying doctor, I began driving 5 hours once a month. A new law cut my dosage down, and when this wasn’t adequate and my other options limited, I quit them a second time altogether. At the same time, my insurance plan was discontinued, but graciously my boss allowed me to get a more expensive plan for better coverage...or so we thought. The plan changed formularies and denied my biologic UNLESS I cut my dosage in HALF and received it every 8 weeks (when it was shown I needed it every 4).

At only 32 years old (next week), I spend most of my days miserable; I have no recent memory of what life is like to not be in pain, all day and every day. I can’t focus because my mind is preoccupied by the pain. I have a headache every day. I can’t be the mom, girlfriend, family member, friend, employee...I can’t fulfill any role in the manner I wish to. My bathtub tends to be my best friend, and the friends I do have to be kept at arms length, as making plans is rarely an option. The swelling in my fingers is horrendous and my grip is failing. I cry about my pain frequently, and I tend to spend my life counting down; I’m counting down during the day until I can go home and lay down, and I’m counting down the hours at home until I can take my medicine and go to sleep, the only time I’m not hurting...well, the only time I’m not consciously thinking about hurting. And as I’m counting down perpetually the one thing my mind can focus on is the thought incessantly running through my head..."What a waste of a life."

I’m angered that there seems to be a monetary value placed on my quality of life by the insurance companies, and I’m sad that I can’t be more to those that matter to me. The only solace I find is to continually remind myself that this world cannot be perfect; therefore, someone must be exposed to painful trials such as these, and if God thinks I am strong enough to be one of those, then my greatest curse is ultimately my greatest blessing.