When I started this blog I went back and forth on whether or not I wanted to share about my disease. It isn’t very joyful and definitely not something that I use to find joy in life, but it is a huge part of my daily life and therefore I decided to share about it. When deciding how to share my story, I thought I should start from the beginning and share some of the ways I turned my struggles with my disease into joys in my life. This is not something that came easy to me, but it is something that has helped me cope with living with Rheumatoid Arthritis.
On my son’s first birthday I began having weird pains in my elbow. My elbow hurt like crazy and I couldn’t straighten it. Over the next few months I experiences pain and stiffness in almost all the major joints in my body. It started with one or two pains a week, but quickly escalated over the next 2 months. Two months after my first symptoms I was given my diagnosis: an autoimmune disease called Rheumatoid Arthritis. I was 28 years old. I began researching my disease, my blood results, and everything I could find about autoimmune diseases. That was a mistake, because with every terrible thing I read, my heart sank deeper and deeper into a place negativity and despair.
As I researched my disease I was faced with the hard facts that I could be crippled in my future. At the time of my diagnosis I actually WAS crippled due to my “flares”. My levels were high and the disease was aggressive. My son was 14 months old at the time and I went weeks without carrying him, putting him to bed, or holding him because I physically couldn’t. I remember vividly one day being home alone with Isaac asleep upstairs. When he woke from his nap I had to crawl up the stairs to get him, my body failing me. Because I couldn’t fully bend my knees, I had to hold my son with my one good arm, and slide down the stairs on my bottom. I felt defeated and helpless.
I remember crying my eyes out in a hot bath one day after work. (The month I was diagnosed our water bill doubled from all the hot baths I would take in an attempt to find relief from my painful joints.) I was crying and I said to my husband, “my fingers are going to be swollen and disfigured and I won’t be able to wear my wedding ring anymore.” I instantly felt guilty for being so vain, thus making me cry harder. I knew I should be worried about being able to care for my son and hold a job, but I couldn’t help but selfishly want that one thing for me. I love my ring and it means so much to me to be able to wear it.
The next week we traveled to the Dominican Republic for my sister’s wedding. I was not in a good place and the stress of traveling made my symptoms worse. The first night there my husband had to cut my food at dinner because I couldn’t. The next day I had to call my sister to brush my hair for me because I couldn’t lift my arms to do it. On the way home my ankle swelled up so bad I couldn’t walk through the airport. My husband loaded all our carry-ons into the stroller and carried our son while I used the stroller as a “walker” to make it through the airport. The whole trip I kept thinking, ‘I’m 28 years old and I am already helpless, what is going to happen in 10 years, 20 years, 30 years?’
Three years later I look back at those first few months and think, where was my faith? Why was I so embarrassed that I needed so much help? Why didn’t I trust God to provide for me? I have to remind myself that we are all weak at times and we all lose our sight of God’s greater purpose. As I look back on the challenges I faced (and will continue to face) because of my disease, I can find something from each of those challenges that NOW brings me joy. Hindsight is 20/20 right?
All those times I missed out on holding my son because of the pain in my arms, made all the times I DID get to hold him that much sweeter. When I went a week without being able to walk upstairs to put him to bed or give him a bath, I was so much more aware of the joy of his bedtime routine when I could do it. I didn’t mind changing a poopy diaper because it meant I COULD change a poopy diaper.
It is very humbling to have your husband cut your food or dress you because you physically can’t, but it is also very joyous to know that I have a husband who would gladly do those things for me. In fact, this disease has made our marriage stronger because we have had to lean on each other so much. There have been more times than I can count when I needed help and I had no one to call except my husband and parents. While it hurts not having friends whom I can call for help, that pain is wiped away by the joy I get when I call my parents and say “can you come over and give the kids a bath and put them to bed because I can’t walk upstairs?” and their response is always “sure, I will be right over.” It’s not always easy for them to drop what they are doing and run over to help me, but my kids love them so much for it and they have so many memories with my children because of that. That is something to be joyful for.
Having to ask your younger sister to brush your hair because you can’t reach it, that’s like going to the salon for FREE! And as for my vain tears over my potentially swollen ring finger? When I became pregnant with my second child (against my rheumatologist’s recommendations), I had the worst flare in my hands that I have ever experienced. Nine of my fingers swelled up and ached from pain. Not all 10, just 9, and guess which ONE finger didn’t swell up? That oh so important left ring finger. I took that as a gift from God. A reminder that He was still there, holding my achy hand, listening to my cries, and only giving me what I could handle at the time.
Is this disease something that brings me a lot of joy, NO. But it IS something that has helped me grow as a Christian and learn to find joy in even the most troubled of places. Maybe that was God’s plan all along… or maybe His plan was for me to find joy in sharing my story with others. Either way I think I have accomplished my goal of finding joy in my disease.
Joy Goal accomplished!