Hey folks, it’s finally autumn around here! The leaves are changing, pumpkins and mums can be seen everywhere, and we’re just days away from Halloween. I can hardly imagine what has happened to summer and early fall. Time has simply flown by so very quickly.
Have you ever noticed that when things are going well, time flies? This seems to be true right now. And looking ahead at the calendar, it feels as though it should be January already. My life is so very scheduled right now, it’s not funny. But the fact that I’m able to be so involved and active is a very good thing.
One year ago, I was not able to schedule much of anything. I was sick, sick, sick with bronchitis which wouldn’t give up. I was still greatly depressed and feeling the effects of a humongous MS relapse during the summer, accompanied by a cumulative total of 8500mg of steroids. And, I was 50 pounds heavier then I am right now.
2009 was not going so well until I took charge of at least one aspect of my health and approached my rheumatologist about trying a different RA medication (Rituxan). I had done my research and knew that it is effective in RA and has also been studied as a potential treatment for multiple sclerosis. My neurologist was excited about this possibility.
In October 2009, I quit my injectable MS medicine and stopped taking sulfasalazine. I continued with methotrexate and in November 2009, I had my very first Rituxan infusion. A positive effect on my RA was apparent within days and the benefit grew with the second infusion. My fatigue levels have improved so much over the past year that I haven’t needed medication to create artificial alertness. I had my second full round of infusions in May/June of this year.
My hands are ‘almost’ my old hands again. They still get stiff on occasion and slightly swollen at random times. I don’t think that they’ll ever be exactly as they were back in college when I was practicing the piano for 6-8 hours/day, but at least they feel good most of the time right now.
Recently I just celebrated the "five-year anniversary" of my MS diagnosis. Sounds like a silly thing to celebrate, but after years of strange symptoms (and having already gone temporarily blind in one eye previously) I was thankful to get the diagnosis and move forward with treatment. This is exactly what we did.
Just one year after my MS diagnosis, the ball started rolling for my RA diagnosis. After years of subtle early symptoms and negative blood tests, more obvious and painful symptoms began to emerge. Things were becoming more serious than a tentative diagnosis of tendonitis.
One time my left shoulder became swollen so much that I couldn’t lift my arm to the side or overhead. The doctor and I were perplexed (and in response to one of her questions during the exam - no, I had not been abused!!) and she said it was most likely bursitis.
A month later, I began having difficulties with my hands (again). But this time, the pain became excruciating. I was not able to play the piano accurately. It was terribly embarrassing that at a church job, I was butchering simple hymns on the last Sunday in October (2006). The last church job that I’ve taken since.
So here it was, again in the autumn, and my life was changing. By December, I was completely crippled in my hands and arms. I couldn’t open my palms, extend my fingers, nor create a fist. My hands were useless but screaming out in pain. Anytime my fingers touched ANYTHING, I winced in agony. I even dreamed of chopping my arms off.
When I think back to the fall of 2006, I shudder inside. It was truly horrific for me. Time seemed to move so very SLOWLY. Painfully slow (literally and figuratively). Those months were difficult ones. I did a lot of crying.
But… I was finally referred to a wise hand surgeon who first discussed the challenges of Carpal Tunnel Syndrome (which I had been diagnosed with instead of RA) and treatment options. Then he injected each wrist with steroids which brought down the inflammation dramatically. The pain was subsiding. He also referred me to a rheumatologist because he suspected RA instead of true Carpal Tunnel Syndrome.
Bless that hand surgeon. Just as spring was rolling in (April 2007), I was meeting with my rheumatologist for the first time. She diagnosed me immediately and we began the process of starting treatment. Over the summer, I started getting better. I also visited an occupational therapist several times to try to address the early deformities I was already experiencing in my fingers. I also learned some joint protection techniques.
By the time autumn came around again, I was in much better shape, physically and emotionally. I had also started my blog and was just beginning to discover the online patient communities in the blogosphere. I still didn’t know about HealthCentral yet and PatientsLikeMe had just opened their MS community.
This was the beginning of a new era for me. Community, support, education, laughs… all wonderful things for a patient living with a chronic disease.
Talking about patient communities with others has been taking up much of my time this fall. I plan to share more about that in a Sharepost soon. Time is flying and life is evolving. Just as seasons change, so do we.
I want to thank you for allowing me to be an active part of this community. I really appreciate it more than you may realize. :)
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.