Those were the days….
You would think that after nearly 20 years, my memory of the onset and diagnosis of Rheumatoid Arthritis would be at best faded and at worst deposited into a long forgotten file. It is not. It is as clear to me as my own name.
I count myself among the more fortunate in that I was diagnosed relatively soon (within a year or so) of the onset of the symptoms. Let me set the stage for how my RA all started. In 1993 I lost my beloved mom who had lived with our family for nearly 10 years and died unexpectedly at the age of 68. It was a difficult adjustment for all of us and I was still missing her 2 1/2 years later when we found out we were pregnant and it seemed like such a blessing. I was pregnant at the age of 42 and so of course we had all of the testing done to ensure everything was OK. From the start things did not seem quite right and those instincts were on point as we suffered the devastating loss of our baby girl in 1996. She was stillborn as a result of genetic abnormalities.
If that pain and grief were not enough, within two months of her birth I started to have some troubling symptoms. Random pain in my neck, wrists and hips. Not in my hands and feet which would have been a much more clear indicator of RA! Instead I was fatigued, felt generally unwell, was not sleeping and of course had this random pain. Doctor after doctor attributed all of this to what my body (and mind) had just gone through, being pregnant at 42, etc. The more they insisted it was psychological the more confused and miserable I became.
Eventually I began to see a new Primary Care Physician and it changed the entire course of my life. He quickly realized that what I was experiencing went way beyond any psychological trauma. He referred me to a Rheumatologist and within two months we knew it was some sort of inflammatory arthritis. At first, he thought it might be a reactive arthritis that manifested as result of the pregnancy and the birth at 40+ years of age. I was not RA+ for nearly 4 years so the blood work was not conclusive either. That said, my symptoms began to clearly indicate RA as my shoulders, hands, elbows, feet even jaw joined the party!
After that initial diagnosis was made my treatment choices were laid out and determined with my “team” of medical, personal and professional individuals combined with my own intense research. It is important to note here that back in the 90’s the protocol for first line treatment of RA was NOT to be very aggressive. Rather usually anti-inflammatories were often used to start and more aggressive treatment often was not introduced until there was radiological evidence of joint erosion. I count myself so blessed and fortunate to have a very forward thinking team who along with me recognized that we needed to treat this severe and quickly progressing disease with some big guns!
I was made aware both through my own research and with discussions with doctors that some of the newer medications had some potentially serious side effects. My instincts told me to forge ahead as quality of life, for me, is much more important than quantity of years. But my youngest son, who at the time was around 9 years old was the one who sealed the deal for me. He had been witnessing my extreme difficulty with daily living and the pain and fatigue, etc. that go with RA for a long time. My two older sons who were, at the time, 15 and 17, clearly remembered a mom who was very athletic and active. To them this was an anomaly that we would deal with and treat. For Reilly, however, this was the mom he was beginning to think would be physically limited and ill, perhaps forever. So, the next Mother’s Day came around my sons were asking me what I might like to do or what gift might they give me. My youngest son jumped up and said with such sincerity, “I know mom. I think we should get you a wheel chair so you can get around from now on!” I tried to smile and say how sweet that was but we could hold off on that for just a bit, but I could not get out of the room fast enough. I literally sobbed when I was alone in my room at the thought of my son’s image of me as someone who not only needed a wheel chair but would likely need it forever – and he was fine with that – God love him. That was when I knew that I would do whatever it took, take whatever medication I could get, try whatever treatment was available to me if it meant I could change that image and that eventuality. AND I DID!
I have no regrets whatsoever about any choices I have made with regard to treatment. I did my homework diligently. Not all treatment choices were successful but every one of them was ultimately mine to make and that is a powerfully important and absolutely crucial way to manage RA!
Here I am at almost 20 years of managing this disease and I have very few joint erosions and no joint replacements! Of course there is much more than just medical treatments that accounts for that. Carefully managing the day to day issues of RA, ensuring that the other components are addressed such as weight management, exercising, alternative treatments like therapeutic massage, guided imagery, attending RA Support Groups, etc. are critical to successfully carrying on and living a joyful, productive life!
My youngest son no longer even entertains the thought that “mom needs a wheelchair” and that is all the endorsement I will ever need!