It is December and I am sitting here wondering where the rest of 2011 went. There are blue icicle lights hanging all along my front porch. My bushes have colorful “net” lights strung across their green, bushy branches. It looks like December. It is December. What happened to the rest of the year?
Last winter was brutal in the Midwest. We had much more snow than usual, and colder temperatures than usual, and..........a blizzard. I remember that one well. It was so cold that the moisture froze in my nose as soon as I walked out the door. Not a nice image, I know, but I'm trying to get my months back in order. I remember going to the ladies' room at work and running warm water over my hands so that they could function. Ah, yes....I do remember January of 2011.
February, March and April are a blur. I was in an RA flare that did not want to leave me alone. I was seeing an RD who thought I had something called Erosive Inflammatory Osteoarthritis. He was wrong. I was suffering. Enough said!
Then came that wonderful, blessed month of May. Flowers were popping their heads out for the first time, basking in the life-giving warmth of the sun. The wind died down, and the temperatures rose to comfortable levels. The snow was gone. My RA did not depart with the snow. I was still suffering.
One wonderful thing did happen in May. I found a good Rheumatologist. What a relief it was to find a doctor who spent over an hour with me on our first visit. Funny, but she didn't have any trouble diagnosing RA. Actually it wasn't funny at all, in the “ha ha” sense of the word. But, I digress. My new doc, started me on MTX and Celebrex and continued the Tramadol for pain. Finally, I thought, I am headed in the right direction and on my way to becoming well! Actually, I knew I would never again be “well”, but I could be better, and better is a wonderful thing when you have RA.
May, June and July were filled with hope and anticipation. My new RD also gave me prednisone to take as a “bridge” drug until the MTX started to work its magic. That was a much appreciated blessing. Unfortunately, while MTX was definitely helping, it wasn't helping nearly enough. I did skip my MTX one week, just to see if it was helping at all. I was in a doubtful frame of mind. All doubts were erased when I unexpectedly found myself looking forward to the following Friday, and my next scheduled dose of MTX.
All I remember about August is that it was hot, and that my RD said it was time to start a biologic. She gave me a choice of either Humira or Simponi. I chose Humira because it has been around longer. In addition to that, I had read many accounts from HealthCentral members about Humira, so what the heck. Why not give Humira a try.
I took my first Humira shot on Tuesday, September 6, 2011. I am a journal freak. I faithfully write down the days I take my Humira shots in my journal. I also keep track of my RA symptoms and flares in my journal. By doing this, I can look back to see if there is any kind of pattern to my flares or any thing that might be triggering flares. It makes sense to me. I think it is a good idea, but the truth is, I have yet to see a pattern of any kind. RA is indeed an unpredictable illness.
RA does teach us patience, does it not? I was expecting “magic” to happen after my first shot of Humira. Well....not so much! Then came shots 2, 3, 4 and 5. Still, not so much magic. Not any magic at all. BUT, then came shot 6. I remember it as if it were yesterday, and I keep playing it over and over again in my mind. I had an entire week of feeling almost normal. It was wonderful!
Unfortunately, my “magic” wore off after eight days, and I was, once again, struggling to function. I have not given up. Last Tuesday I had my 7th shot of Humira. It hasn't “kicked in” yet. It usually doesn't kick in until four or five days after the injection. So, I am waiting for the “magic” to return.
I remember my worst moment of last year, but I'd really like to just forget it. I was in intense pain for 60 hours straight because it was the weekend, and I couldn't contact a doctor. This was before my diagnosis. I spent the entire weekend on the couch, not moving, not eating, not drinking. I am embarrassed to say that I was thinking that it really wouldn't be so bad just to go to sleep and not wake up. I was in a dark place.
My orthopedic doc pulled me out of the flare with a prescription of prednisone. My hope is that I never find myself in that place again. So, here we are in December. I think I am ready for this month now. I am looking forward to 2012 with hope. I am determined to do what I can to improve my quality of life. I am happy and feel relieved that I now have a doctor who “gets it”. I have a plan, and that makes all the difference.
I see my RD in two weeks. At our last visit, she hinted at the possibility of decreasing the length of time between my Humira shots. I don't know if Humira will eventually last for two weeks or not. If not, I will consider changing my dosing schedule to whatever my RD recommends. She has helped me immensely. She cares, and I trust her.
I have been thinking about all I have learned in this last year. Some of what I have learned is hard to put into words. I know that I am stronger emotionally than I have ever been. Lene, Lisa and Ronie helped me trudge along in the beginning when my feet felt too heavy to lift. I simply didn't know if I could keep going. Health Central has been a wonderful blessing for me. I don't like to think about what might have happened had I not found support here, and from my wonderful husband of almost 35 years.
Pain is hard to handle. RA pain is really hard to deal with because it can be unrelenting. Feeling alone and dealing with the pain and fatigue of RA is not something I ever want to experience. I don't want anyone else to experience that either. If...or should I say when, I get to the point where I am more physically able, I plan to start an RA support group where I live. I have learned that helping others is a sure antidote to dwelling on my own problems for too long. The joy we get from helping others is like none other.
The most important thing I have learned this year is to do what I must to hang onto my hope. There are new drugs being developed for RA. There are good days and bad days, but we need to find the joy in every day, and realize that every day is precious. I have changed. I notice things I never saw before. The grass is greener, the sky is bluer, and there really are a lot of nice people in this world. I love life.
What have you learned this past year that has helped you cope with your RA?
Published On: December 05, 2011