I am participating in 2017 RA Blog Week at www.radiabetes.com/2017. Everyday for a week, the participants are given a prompt and are asked to blog their responses. Monday’s prompt is regarding mental health. This has been especially challenging for several reasons. My maternal grandfather passed from complications of RA and a maternal auntie that passed from lupus complications. My first memories of Papa were of him walking with a cane and always in pain. I understood that I had to be gentle, even giving him a goodbye kiss, because of the pain. His hands and limbs were deformed. My grandma, his wife, had dementia and diabetes. In the end, they could not take care of each other and spent their last decade together in a nursing home. My aunt was afraid of the medication that was given (corticosteroids) to manage her lupus and subsequently passed from kidney failure/heart issue.
When I was diagnosed with psoriatic arthritis, in 2014, I remember feeling relief and sadness. I spent the few months leading to my diagnosis, doing medical testing from lyme’s disease to histoplasmosis. When my rheumatologist came back with psoriatic arthritis, it was the culmination of months of uncertainty. It wasn’t until I was prescribed plaquenil (step therapy) that it hit me that I may suffer the same fate as my family members.
After plaquenil failed (I lost twenty pounds in a month), I was prescribed subcutaneous methotrexate. I can’t tell you how difficult it is for someone with vasovagal (sudden change in heart rate from a reaction due to a difficult or stressful event) to give themselves injections. I went through a year of emotional pain. I saw friends getting married, going on holidays, changing jobs and carrying out their lives, as normal progressing young adults. I had failed not only myself but my family for not being “normal”.
For a year, I wrestled with all of these regrets, sadness and the physical issues. I attended countless doctor appointments, lab visits and only worked part-time for my dad’s business. I tried to isolate myself from friends because I believed no one wanted to hear about my ailments. I was living with my parents, which was a blessing, because there were days I couldn’t move, let alone dress or fix food for myself. I didn’t want to be a burden on my parents but I needed their help financially, physically and emotionally.
After a year of mentally abusing myself, I decided I needed to get my mental health in check before I could get my body to a new “normal”. My first order of business was to change my workout routine; yoga, weights and running on a rebounder, four times a week. I started talking about my condition to friends and family. I got in touch with my local Arthritis Foundation office and began working on my local Jingle Bell Run. I let my other physicians know about my struggles and kept an open dialogue with them all.
Finally, I realized that this diagnosis meant more of modifying my life rather than it ending. So, I began educating myself on rheumatologic medications. Methotrexate alone was not working and I understood I needed additional medication. After much deliberation, I went to my rheumatologist armed with knowledge and questions and settled on Remicade with methotrexate. Remicade made a huge difference and I was able to start managing my condition rather than the condition managing me.
This year, I switched to Cimzia and was able to quit methotrexate. I am not the same person I was before my diagnosis – I am a stronger and more resilient me. I learned about myself and forged new lasting bonds with people. I am happier now than before my diagnosis. I still worry about my future but, I am confident that I will be okay. I am blessed with a wonderful, loving, supportive family and friends. In additon to my friends and family, I have the best physicians, nurses and staff that assist me. I couldnt do it without my medical family. I also want to recognize the Arthritis Foundation and Arthrits National Research Foundation for all that they do for the rheumatologic community, including myself.
Mental health was the first step to my physical well-being. This fight is for all of my fellow chronic illness patients and for the ones that have gone before me. Your stories continue to inspire me.
Lots of health and love.