Sundays are always difficult. After 45 minutes of sitting through church my back starts to hurt. Yesterday it was especially painful. By the time I finished teaching my little 5-year-old Sunday School class I could hardly walk. All I could think of is getting home to my heating pad. My heating pad is my drug of choice. I have to have it, can't live without it. At times it means more to me than my own children. Yesterday it wasn't working for me. I was actually in tears. I had to step it up. My husband had accidentally bought Tiger Balm patches which he dug out of the medicine closet. He slapped one on my back and within 20 minutes I was sleeping like a baby. After a 2 hour nap I felt wonderful. My addiction to the patches has begun.
January 27, 2011
I saw the Rheumatologist today. She told me she had a diagnosis for me: suronegative HLA-B27 positive inflammatory arthritis. That didn't sound like much of a diagnosis, more like a description. But I understand these things take time. The doctor was concerned about my back. The fact that the pain went away with the prednizone then returned once I was off it led her to believe I had Anklosing Spondylitis. Almost all AS patients are HLA-B27 positive. She said it was likely I had Psoriatic Arthritis and AS, a combination that is not uncommon. Well at least we know it isn't RA. And we have a possible genetic connection linking my arthritis to Maddie's. I bet if we tested her she would also be HLAB-27 positive. The doctor is taking me off Plaquenil, I wasn't tolerating it well anyway. I had two choices, to go the methotrexate/sulfasalazine route or the biologic route. The doctor recommended biologics because methotrexate won't work for AS and if I do have that we need to be really aggressive. I chose biologics so I start Enbrel next week.
January 23, 2011
Maddie performed in her first piano competition yesterday and won second place. It was a very difficult competition and there were many fantastic performers. Maddie is musically talented, and I don't use that term lightly. I've taught piano for over 20 years so I kind of have an idea what I'm talking about. She internalizes the music and plays with such artistry for one so young. Each time she performs I offer a silent prayer that the arthritis will never get to her hands and wrists. Lord, give her that at least.
January 19, 2011
January 15, 2011
In order to get anything done around my house I just have to bite the bullet and get to work, even though it's painful. I have found it helpful to listen to really loud music on my iPod while doing housework because then tasks like vacuuming don't seem to hurt as much. One song in particular helps me forget the pain. I don't know what's special about this song, maybe it brings back happy high school memories. Anyway, here's my arthritis song.
January 13, 2011
I slept well but it was hard to get out of bed this morning. It helped lying in bed for an hour, awake, stretching, before my feet hit the floor. My 10-year old son helped me sit up. Even after a long hot shower it was hard to get down the stairs because of stiff knees and ankles. Guess all the Prednisone has officially worn off.