Acceptance of RA, denial and knowing all at once...

Last updated: October 2013

I was diagnosed with RA in 2010 (at age 54), after about 6 weeks of constant fatigue and traveling joint pain, spending my days on the sofa wondering what in the world was wrong with me. I have had fatigue issues at different times in my life, but not like that! I finally went to the doctor, and was referred by my Primary Care to a Rheumatologist after testing positive for RF. The Rheumatologist confirmed the diagnosis after an extremely high anti-ccp result (940), and a physical examination of inflamed swollen joints.

The first two years were interesting... I tried Humira straight away due to the high lab results and physical findings, skipping over the regular Methotrexate route. Within a few weeks my white blood count was low enough that I was taken off the Humira. But, as if by magic or miracle, I suddenly seemed "recovered"... no joint pain, no fatigue, just back to normal (or my normal, anyway)... this lasted about two years. So, I chalked it up to a fluke and went on my merry way... denial.

However... In October of 2012, after a long visit with my mom, and a lot of physical work in her garden, long airline flights, etc., I noticed some vaguely familiar joint pain and inflammation starting in my left hand and wrist... at the time I thought I had hurt myself by overdoing some heavy planting in my mom's garden... then, the pain increased dramatically and moved to my right hand and wrist. Uh-oh, I knew this pain... this was more than over working in the garden. I was also beginning to have that debilitating fatigue again... and losing a lot of time by needing to rest. So, back to the Rheumatologist ... (knowing)

Now, one year later, this month in fact, with unremitting pain in many joints all over... I have been down an arduous and winding road of medications... Prednisone, Plaquenil, Enbrel (another discontinuation due to white blood count drop), and more Prednisone, and now Methotrexate in tiny doses, trying to patiently move into a working dose without white blood count issues (or other issues)... a long process requiring many blood tests and cautious dose increases, along with very focused patience, which I hear is an art...

I am in pain most mornings now, sometimes I have to use a cane to get around... which I have many feelings about, mostly related to my ego... but grateful for the steadiness it provides none the less... I feel a bit more mobile in the afternoon, but with a pronounced lack of stamina. My life feels turned upside down, especially when I start comparing myself to others, and slide into a "non-acceptance" place of what is really happening (which is less often now)... When I am able to accept the diagnosis, the disease, the medication, the lifestyle change, and come to peace within myself, I really do so much better. I have a ways to go. Some days I feel pretty good, and so I do what I love to do, need to do, play catch up (I still ask myself, "Could it be over?")... Other days I feel completely spent with aches, pains, and fatigue... all day... It's a roller coaster (And, I then come back to reality, "It's not over").

I have so much more compassion for people now, especially people who have disabilities... knowing they once had a different life too... I am fortunate that I am still able to take a walk most days, to cook, play in the yard with my dog, to go and visit with friends, to have a quiet life, and a good solid marriage. So many people have more suffering... yet, I do suffer too.

I think what I am learning is that my life has to be more like it was when I was a kid... When I was growing up, I lived in a small neighborhood, I played with the kids next door, and going to the mall once in awhile was a big treat. We walked to school just down the street, and had dinner at home every night. In other words, life was simple, the world was smaller somehow. So, I lean on that memory of happiness, and try to cultivate it... to be okay with the world being smaller for me. My husband and I find happiness in the little things now, we are more aware of the beauty of the geese flying overhead this time of year, calling out to one another... of the gentle changes of season, of the delight of coffee on the deck with the autumn sun low in the sky. We have more conversation, less going and doing. And, we are actually happier in ways...

I still feel tearful some days, and that's okay. I talk it out... My husband is my best friend and he supports me so well. Sometimes, a hot fudge sundae is the only thing that works... Sometimes, working in the yard or playing with the dog is my great accomplishment and joy. My spiritual life helps me through the rough times. My family helps me stay on track when I want to overdo. It's a journey... We never know what is around the corner... but somehow we just keep walking the path with hope...

My love and affection for all suffering beings goes out to all, and I hope by sharing my story I've eased the burden in your own suffering and helped you relate to another human soul walking in some familiar shoes... we are never alone. Peace and simplicity to all who are here. Thanks for reading my story...

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