It’s almost Christmas, and I’m almost ready.
I started early this year. It may have taken me 10 years with this disease to learn it, but I’ve finally learned to start early, plan ahead, work smart because my body might not always be able to work hard.
I had a flare for the entire month of November. I am stubborn. I hate Prednisone. I’ve been on it in varying amounts for a solid two years trying to get off of it completely. Right before Thanksgiving I finally gave in and called my Rheumatologist to let her know the 8mg I had FINALLY been able to successfully dose down to from 60mg, was just not cutting it. After trying a 20 mg burst for five days, I had to report to her that I still could not move my wrists for the first 6 hours of my day, as well as having to sit every 3 minutes when trying to stand, the excruciating pain in my knees which I was unable to straighten, and the most severe fatigue I’ve experienced this fall. She then said 20 mg twice a day. It was like a high! I could stand! I could stretch! I felt 30, not 60! I felt like I didn’t have severe Rheumatoid Arthritis. I love Prednisone.
As of today, I’ve been on a 40mg Prednisone dose for almost two weeks. The “high” has worn off but I still feel alive, like I can move and do small things around the house and take care of my sick kid. I’ve also found some randomly long hairs in some random facial places, had crazy mood swings, sweated profusely, and have had major difficulty sleeping. The worst part? Since August, with exercise and nutrition changes, I have lost 50 pounds.
**Insert applause here if you know how hard that is to do with a chronic disease, small children, and million medicine side effects**
One week on Satan’s little Tic-Tacs and I gained 5 pounds back.
My next directions are to “dose down by 5mg every seven days” – a pretty normal Prednisone ween from my experience. That’s at least 7 weeks on a higher dose of Prednisone just to get back to where I was. And as one RA nurse puts it, I have a very “special” case of RA. I have never been in remission since the day it showed its face (almost 10 years now). My disease is extremely active – all the fricken’ time.
See? I told you I was stubborn… even my disease holds that trait. No biological, DMARD, NSAID, or Steroid meds have decreased the numbers my doc looks for in all that blood work. None. In 10 years. *sigh* So, me and my “special” RA, have an increased flare each time I dose down on Prednisone. That’s potentially seven flares for the next seven weeks. Don’t you just love Prednisone?
Today we are decorating for Christmas. I’m almost ready! And thanks to Satan’s Little Tic-Tacs, I’ll be able to stand long enough to help decorate our little tree, move my hands enough to hang ornaments, and have enough energy to watch my beautiful little boys enjoy some time with their father. I’ll worry about the next seven weeks and side-effects later.
Bring on the merriment.
#RAPOV 