January always marks the anniversary of my rheumatoid arthritis journey. When I think back to the beginnings of this journey an image of myself waking up time and again throughout the night wondering why my fingers hurt so badly and wouldn’t bend always comes to mind. I remember going through my days trying to figure out what I had done that would make my fingers so sore, swollen, and stiff.
I also remember the extreme fear I felt when my initial appointment finally arrived with the rheumatologist. It had taken four months to get in with him. When I scheduled the appointment all the new patient paperwork was mailed and I filled it out immediately. Before going in for my appointment, I reviewed what I had written several months back and realized that within four short months I went from sore fingers to stiff knees that struggled to get down the stairs and shoulders that could no longer help me undress without assistance.
I remember the rheumatologist telling me he was pretty certain I had rheumatoid arthritis. I went home and read everything I could on the topic. My family physician called me on my cell phone at 9:30 at night when I got off work to confirm. I remember sitting in my car hyperventilating I was so scared.
Fast forward to January 2011 and I finished a workout this morning with my husband, I will be walking our dog Izzy shortly, and then I will complete a long list of things I want and need to do. I am full of energy and doing better than I have in years. Getting to this point has not been easy. In fact, it has been the most challenging thing I have ever experienced. It is also one of the things I am most proud of.
When I began reading about rheumatoid arthritis, the things that scared me the most were the deformities (no longer a fear of mine. I know they are happening, but I can deal with them now.), the medications, and the fact that I could not find one single story of anyone that was doing well with rheumatoid arthritis. Why would I want to take medications with extreme side effects when it didn’t sound like it helped anyhow? I did take them though because I was scared. I was scared that I would never be able to take my daughter’s hand and skip with her again and I just couldn’t risk that outcome.
My RA journey has taken me many places. I found success following an anti-inflammatory diet along with meds for several years. I attempted to go drug free with some not so great results, but something I would do again and have absolutely no regrets about. As of last summer, I am back to an ant-inflammatory diet along with medications and doing great!
What I hope to share on my blog for other chronic disease folks is hope. When I went back on medications last summer it took a lot of encouraging from my naturopath. My biggest fear was that they wouldn’t work and all the hard work I had done to be drug free would be lost. However, they are not only working, but they are working really well for me right now. Sometimes I hesitate to share how well I am feeling because I would never want to feel I am rubbing it in someone’s face who is really struggling right now. Also, there is always a fear that as soon as I share how great I am feeling, I will wake up and not be able to get out of bed.
When I decided to go back on medications, I made a two year commitment to myself. If the drugs didn’t work, two years would give me time to experiment with other ideas. If they worked for even two years and then the effects wore off, then I would accept that I was given two wonderful years I might not have experienced otherwise. I have to enjoy life to the fullest while I have the ability because I now realize that any day it could all come to an end. I need to have memories of fabulous days to guide me through the rough patches. I need to see in writing that not every day of rheumatoid arthritis is awful. I think as chronic illness bloggers we often use our blog as a way to share the down times. I have even seen bloggers absent for months and then return when they are feeling bad again to say that they hadn’t been blogging because they were out enjoying life. On my worst days, when I read something I like that I would smile in happiness for that person and wonder, “what does living life with RA mean when you feel good?” I needed to read those stories just as much as I needed to know that I am not alone in my pain.
I have recently been given a very special gift. I have been given my physical life back. I told my husband the other day as I was skipping along next to him that in the last six months I feel like I have gone from being an elderly woman to a vibrant young woman again. My body is doing amazing things right now and with that comes a mind that feels open to possibilities again. I feel like I must share these good times. I don’t do it as a way to brag, but because I know how desperately I needed to read the success stories when I was diagnosed and as I moved along my journey. Due to all the horror stories I read, I stopped reading anything about RA until I started my blog here and found wonderful people that understood how I felt. I feel like we must get stories of success out there to give people hope, even if they are only one day stories of success. If you are one of the bloggers that shares what happens to you on good days as well as bad, “Thank you”. You have inspired me and kept hope alive for me on days that seemed impossible. During my worst days I needed to know that RA folks were still out enjoying life with their family and friends, that they had hobbies, and that they enjoyed simple things in life. I needed to know that my life would not be consumed by disease. This disease tries to take so much from us, but we are strong and we can keep fighting. For me, it has to be through positive images and postive thinking.