Often I think back to an evening in 2004. I finished teaching an evening class at 9:00, walked to my car, and received a call. I sat in the parking lot absorbing the news from my primary care physician that I was officially diagnosed with rheumatoid arthritis. I'll forever be thankful to him for patiently explaining the findings from the rheumatologist I had recently visited. He assured me that once I was on the right medications life would be fine again.
I don't know that I ever questioned my doc's supportive words that life would be okay again, but over the following years it didn't seem like it was in my future. I was on meds for four years, got better, and then worse than ever. My rheumatoid arthritis went from mild to severe. Since the medications didn't seem to be working anyhow, I decided to take a two year break. It was the supportive words of my health professionals that lead me back to medications. My naturopath had me take a good look at where I was and where I wanted to be and my primary care physician suggested I start fresh with a new rheumy. The advice from the two of them was just what I needed. I went to my first appointment with the new rheumy ready for change and a feeling of optimism.
One thing I always did for myself even during my darkest days of struggling to walk up the six stairs to my bedroom, needing my children to undress me, and finding everyday tasks like lifting my cup of tea to my mouth was to visualize myself well. I could always see myself hugging my family without pain, skipping beside my children, bike riding with my husband, and walking my border collie with ease. I never let those scenes drift from my mind. When my new rheumy suggested a mixture of methotrexate and Enbrel, I accepted and for some reason knew as I was shooting myself with my first dose of Enbrel that things were going to be different this time with medications.
I was diagnosed in April 2004. From that time until August 2010 when I started on Enbrel, I searched high and low to find someone who was leading a fairly pain-free and active lifestyle. I had no luck. I found person after person who dealt with the pain I did during my rough years and wondered if I would ever find someone who got better. "Maybe people don't get better" was a thought I sometimes allowed myself to think. Then my optimism won over and I convinced myself that people do get better but stop sharing online because they are out enjoying life again. I had to believe my life wouldn't be one of constant pain and physical restrictions.
In the five years that I have been on my mix of Arava (went off methotrexate due to increased number of nodules) and Enbrel, I have finally found a person that leads a pretty much pain-free and active life. She has flares off and on and has to watch her stress levels, the weather, food, and other conditions that contribute to the flares but overall leads a pretty good life. She has answered "NO" to the following questions from her rheumatologist for some time. "Do you have morning stiffness?" "Do you ever need to take pain medications?" "Do your flares last more than a few days?" Who is this person that I finally found? It's ME. I'm finally the person I searched for all those years. I am the person who I dreamed about on my most difficult days. Will I always be this person? I have no idea. What I do know is that at this time my rheumatoid arthritis is under control. I searched too long and too hard to find the person I have become to worry about what "might" happen in the future. Now is the time to embrace life and be thankful that my visions of wellness came to be. If it hasn't happened for you, please don't give up. Keep seeing yourself healthy. Know that it may take years for you to find the person you are searching for but that person is out there just waiting to be found.
What an amazing post! Thank you so much for sharing your journey from darkness into light. I wish more people would do that — it offers so much hope. During my dark times, when it was so hard to find a reason to hope, a post like this would have made all the difference.
ReplyDeleteI just wrote a decently long comment letting you know that I appreciated your article and the like... but I had to switch Google accounts and it deleted what I wrote! Frustrating!
ReplyDeleteAnyways, check out my own blog detailing how I got past my own autoimmune disease when you have time:
http://myautoimmunediseasestory.com/
And good luck my friend!
I just wrote a decently long comment letting you know that I appreciated your article and the like... but I had to switch Google accounts and it deleted what I wrote! Frustrating!
ReplyDeleteAnyways, check out my own blog detailing how I got past my own autoimmune disease when you have time:
http://myautoimmunediseasestory.com/
And good luck my friend!
I was there when you started Enbrel and remember your concern at first. I'm so glad that you decided to jump in with both feet and that Enbrel was your med. I'm surprised to be able to say after a long time and a lot of meds, I too have my RA under control. It's not perfect but I don't ever think having RA is going to present us with that option. That said, it's still pretty awesome in my book and a lot more than I had expected at this point. I'm so glad to hear that life is treating you well and have enjoyed seeing your name and face within the online RA community. I hope this trend continues on for both of us for a very long time.
ReplyDeleteAlthough my RA started in 2003, I was formally diagnosed in early 2004 as well.
ReplyDeleteLook forward to following your blog.
Hi Cathy, I haven't checked out your site in awhile. I am wondering about your nodules. I have several on my finger pads. They come and go, but never really go away. You mentioned the MTX as a culprit and I am wondering if the switch to Arava has made a difference to your nodules.
ReplyDeleteI've been off MTX for almost five years. Until recently I haven't had any new nodules. However, I've had two poke out on my wrists recently on Arava. 😁
DeleteThanks for sharing your experience :)
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