Sometimes I get so caught up in my own self-loathing and self-pity. I am too busy dwelling on the things I can no longer do and I am too busy throwing pity parties for myself to notice the truly important things. I forget one of the most important things that has pulled me through the toughest times in my life. And when I sit and think about it, I mean REALLY think about it…well, the world is perfect and my life is wonderful once again.
Matt was my high school sweetheart. He was one of those boys who, when he looked at you, seemed like he could look right into your soul with his big brown eyes. He was so intelligent, and it was very attractive on him. At 16 we started dating. We met in boarding school so we didn’t really have a chance to date and our relationship was built purely on letters and notes. I soon found that I was able to open up to him, not just about the good things about me, but I was able to open up about the bad things. I was able to tell him my deep dark secrets, and he loved me, the good and the bad.
Fighting for our love
I fell so hard for him. It was a feeling I never in my life had experienced. It scared me and I felt vulnerable. And why I tried numerous times to make up reasons to break up with him and sabotage our relationship, each time he let me know he wasn’t going anywhere. He fought for our love.
At 18, just one month after graduation, we married. It was a little ceremony at a place called Miracle Mansion in Eureka Springs, Arkansas. My mom, dad, and grandpa were there and most of his family came as well. We were so in-love. And little did I know that that love would some day save my life.
I became very ill
At 23, right after the birth of our second son, I became very ill. I lay in bed unable to move, so matt would carry me when I needed him to. I was in so much pain that there wasn’t any room left to feel anything else, not even love. For months and months I laid in bed unable to do anything by myself. I wasn’t even capable of helping raise our kids. So Matt worked hard for his family and had to come home, make dinner, take care of the kids and soccer practices, and take care of me. And then, at the end of the day, he would hold me in his arms until I stopped crying and would fall asleep.
I kept fighting
The next two years were horrific and spent with various doctors who kept testing me for multiple sclerosis and telling me nothing was medically wrong with me. I felt like I was losing my mind. Matt never stopped believing in me though, and encouraged me to keep fighting until someone would listen. And he made sure I kept fighting, even when I was so tired and so worn down that I felt I couldn’t possibly go on. He made sure I fought up until I got my diagnosis.
At 25, I was finally diagnosed with having severe rheumatoid arthritis in 69 joints. My rheumatologist told me they thought, because of the extent of damage I had, that I must have had this disease since high school. I was very active in high school. I played volleyball, basketball, I was a cheerleader, and I ran track and cross country. My rheumatologist told me that that probably kept my joints mobile and that all my pain was most likely masked by sports injuries.
Telling my husband
I will never forget the night I had to tell my husband. I could barely stop crying enough to talk. Matt once again held me in his arms and told me that everything was going to be alright. He made me believe it too. He could somehow always make me believe that things were going to be alright.
The next couple years
The next couple years were when I thought it was all going to fall apart. The damage in my joint increased dramatically and it was almost as though I could feel my joints turning. I started to become cold, unable to let myself feel anything. Every rheumatologist appointment I went to I would cry. There was never good news and I knew for sure I was going to drive my husband away.
He never gave up on me
He never gave up on me though. He always knew that behind my cold face was the happy, free-spirited, loving girl he once married. He helped me around the house with the things I could no longer do. He always tried to make me laugh and smile, which he has always been good at. He cut my meat when I needed him to, and I even think he had to help feed me a couple of times. He took me out to dinner even when I had to use my cane. And even though I was humiliated most of the time, he never acted embarrassed of me or treated me like I was any sort of inconvenience.
After three to four months on Methotrexate I had what my rheumatologist called an uncommon symptom of severe alopecia. I literally lost almost all the hair around my face from ear to ear. I thought that this would be it for me. I had lost my mobility and independence and now I was losing my womanly features. My husband was surely going to leave now, after all I was no longer the woman he fell in love with. I felt I had nothing to offer.
I was beautiful
Matt really surprised me with this one. He cut my hair. My oldest son still talks about how we all once had shaved heads at the same time Every time I came home with a new wig my husband would tell me that I was beautiful. And when I took my wig off, not only did Matt tell me I was beautiful but he made me really feel that way too.
Now that’s love!
Over a year ago Matt took a job in the oil field in order to provide our family with a better life. Unfortunately at his last job the money was barely enough for me to keep up with medication and doctors appointments. You see after all these years we haven’t had the money for biologics like Enbrel or Remicade. Even with insurance and prescription assistance the cost per month was going to be $2000-$3000. That was way too much money for a young family like us to afford, especially when every cent we save goes to caring for me. But my husband sacrificed being home with his family so that I could have my medical needs met, and so that our boys could have a better life. Now if that isn’t love, I don’t know what is!
It’s as simple as this…
By now you are probably wondering why I told you all of this. It’s as simple as this…love saved my life! There were times in my fight with this disease that I just wanted it all to end. I literally wanted to teach myself how to not feel anything at all. I was too tired to fight and I almost had no strength left to even care. I thought that this was it for me, and that I was destined for a life full of pain in suffering. I was no longer a person that I recognized. I didn’t even like myself. I would say awful, horrible things to my husband. I know a couple times I told him I wanted a divorce so that he could find a new wife and mom for my boys so that they could go on living a full happy life without me. And then a couple times I told him to shoot me to put me out of my misery. And when I lost my hair I told him to go find another woman, one who he could stand to look at and be attracted to. These were all awful things to say to a wonderful man who has always shown me true love.
Love was my reason
Love saved my life. I would have given up on everything years ago without love. The love my husband has shown me has given me a reason to fight this disease. It has shown me that I still have a life to live despite rheumatoid arthritis, and that it can be a happy and full life too! Love has helped my through the hardest and darkest times of my life. And well, love is the reason I continue to fight today. So on days when the pain is almost unbearable and I think that this is it and life will never be good for me, I think of the love my husband has for me, and the love I have for him. I think about how that love has saved me and how it still continues to pull me through. I am 30 years old today and in June Matt and I will celebrate our 12th anniversary. Not bad for someone my age. I feel lucky to be married to such a wonderful man who has shown me more love than I could have ever imagined. His love has given me a reason to live, to be happy, and to love deeply. And still to this day when I look at him my heart melts, my pain eases up a little bit, and I can’t help but smile at those big brown eyes. He is truly my hero!
My hope for you
My hope for you is this…that love helps you find your way through the trials of this disease. May love provide you with the strength to fight for your life. Maybe you don’t have an “other”, so you fight for love and never stop looking. The truth is that we are worthy of love despite our incurable illness. And on the days where you just feel like there is no possible way you can fight this disease any longer, think about those who have loved you along the way. Think about those who have made you smile and who you have shared a good laugh with. Whether it is a good friend, a child or other family members, or a good animal companion love can pull you through this. So today, even if it is just for today, go ahead and break out of that cold exterior that rheumatoid arthritis has helped build up and allow yourself to feel and experience love. I know it’s scary, but it is possible and it just might save your life too. After all they do say that true love stories never have endings, and I am not about to end my story because of rheumatoid arthritis…are you? Good luck and best wishes!