For as long as I can remember, I’ve been tired and achy. As a child I was told that eating better would give me more energy (I was a picky eater) or that the aches were simply growing pains. I would outgrow it, so they said.
Flash forward to 2008. After my second right shoulder surgery, the thumb and fingers on my left hand started swelling, were extremely warm to the touch, and were next to impossible to bend or use. I attributed it to overuse, since my right arm was in a sling from the surgery. Months after rehab, the pain spread to my other hand and feet.
After a multitude of blood tests, I was sent to a rheumatologist. Finally, I thought, I can get answers! Wrong. This doctor was only interested in me for drug studies and did not have my personal well being at the top of his list. Many years of multiple drugs, and I’d had enough. I begged my primary care physician for a referral to another rheumatologist, one that would help with the pain and fatigue. She sent me to a doctor that didn’t believe in all the commercial drugs on the market, and my symptoms seemed to be managed nicely with quarterly injections of corticosteroids. A year of that and the effectiveness wore off. He’s no longer in my insurance network, so I’m back to square one with another doctor.
I travel two hours one way to see the newest rheumatologist. I’m still trying to find answers and relief. At this point, I’m not even sure there is something out there that will help. I’ve been on Humira, Enbrel, Actemra, and now Rituxin infusions with no relief.
During all this I’ve lost a paralegal job (my employer died) and a real estate abstracting position (my employer retired 6 months after hiring me and making promises of retirement and benefits). Since then, I’ve managed to start my own abstracting business and have been able to hire one full time and two part time employees. I can’t say enough about how awesome my employees are! I’m able to take off when it’s a rough day. That’s the best part of being self-employed.
My husband has been with me to almost every doctor’s appointment and is my biggest cheerleader. He sees the struggles, pain, and anxiety this disease causes and feels my frustration with the inability to find something that works.
Someday I’ll wake up with no pain, stiffness, or fatigue. That’s my hope. For now, I push on, knowing that if I stay in bed too long, I’ll be stuck there all day. The struggle is real. That’s why I fight like a girl!