Today is the first day of infusions. I am married, have a 13-year-old son, and will be 36 in a week…
I am hopeful that my journey leads to quicker diagnosis and relief for someone else out there. My symptoms were vague and non-specific in my early twenties. I occasionally have back, hip, and foot pain, but I attributed it to my active lifestyle and career in retail. I had a pretty easy pregnancy and delivery at 22, and remained pretty healthy. However, when I was about 27, things seemed to change overnight.
My sister, son, and I all contracted Fifth’s Disease (a minor kid virus) at the same time. My son got a rash and healed pretty quickly. My symptoms were painful and severe. I had extreme pain and inflammation that never resolved. After 6 months of doctors and tests, everyone agreed that I had an unknown illness unrelated to the virus. I remember a period of seeing specialists and hoping each time they could give me some remedy or answer – only to leave the office crying. Most of my pain was in my feet and upper back and chest. I had a high sed rate and low RBC. Other than that (and the pain) I was perfectly healthy.
Fast forward several years, and the doctors were convinced I only had foot problems related to my job as a retail manager. I was diagnosed with posterior tibial tendon dysfunction, and had a talo-nav fusion to correct it. This painful surgery was followed by three more years of constant and unresolved foot pain. I finally gave up on cute shoes, walking without pain, or walking without a severe limp. I was angry and frustrated that I had no solution, and I was under 35, but couldn’t run or play or do what I wanted.
More recently, I have been more exhausted than ever, and have faced increasing levels of constant pain.The pain in my chest and back were so bad I feared sneezing. I couldn’t walk distances, and worst of all, I was too tired to do what I love. Even my hobbies like baking and gardening were too demanding. I could hardly gather the strength to get to work each day. At home, I seemed like a zombie. I hit the couch and slept for 10 to 12 hours – only to wake up exhausted.
Over Labor Day weekend this year, I finally developed iritis and scleritis. It turns out this condition was the smoking gun I had been looking for – an answer to the puzzle. After several more tests, doctors finally realized I had been suffering from AS. Who knew?… So that brings me to today. I am starting remacade – and am hoping this treatment changes my quality of life. I look forward to less pain and more energy!
I am cautiously optimistic that I can go back to being the “me” I envision… active, free of pain, doing what I want without wondering how many pain pills I should take with me wherever I go. I am so lucky (like so many others out there) that I have a wonderful husband, son, and family that have supported me through this. I count on their strength when I am weak.
“The best way out is always through”
Dublin Ohio United States of America