I refuse to be defined by the disease in my body

I start each morning with a prayer, “God help me to find the good in each day. Help me to NOT be defined by the pain that I feel in my body. Let me show kindness and gentleness to others that like me have medical issues beyond their control. Let me be an extension of your love!”
I believe it helps me to focus on the good and not be too caught up in the illnesses that plague my body. I have had RA for four years and probably longer based on how quickly my body has gone down hill. Currently, I have failed all therapies and have never been stable on any medication for long. I still have the port that was used for my infusions and I am waiting on the new medication, Xeljanz to hopefully work. I am on so many pills a day, one might think that I am my own personal drug store. I also suffer from Hypogammaglobulinemia, Reflex Sympathy Dystrophy, a spinal cord injury and a few other diseases. I am no longer able to work because of all of the complex issues that these diseases present to me. RA has spread to each joint in my body and currently I am waiting to see a surgeon for my bicep muscle which was eaten away by the synovial fluid during flares.
I don’t want my story to be one of defeat, I don’t want anyone to feel sorry for me, and I refuse to define who I am by the pain that I feel each day of my life. There is the theory of the glass and whether it is half full or empty. I would say that even in the midst of my rather rough journey that not only is my glass half full but rather it is overflowing with blessings of this life. That doesn’t mean I don’t shed tears on even given day from the intense pain that I feel but rather that I believe from my faith in God, I have been given the inspiration to continue on this journey with a positive attitude. I cling to my faith on many given days when I feel down.
I wish things were different, I wish I was healthy but this is the journey that I have been given. I am so blessed to have my care taker and soul mate, Phil. He is the light of my life and along with him and my sweet companion and fur kid Mia we take each day, the good, the bad and yes, at times the very ugly and go forward together knowing that we will endure and prosper. I have been blessed with so many that love me, family and friends.
I have no idea what tomorrow will bring. I am blessed with an amazing doctor, Patrick Knibbie and P.A. Jeanne Jenkins. I am quite certain without them I would be much worse.
Tomorrow hasn’t come and I can’t worry about what it might hold. Sometimes it is a moment by moment journey….just getting through the pain. However, the one thing I do know is that RA will NEVER define who I am.

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Comments

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  • Helen Opczynski
    4 years ago

    I wouldn’t be where I am today without my faith in God. Thank you for sharing your story. I will be sharing my story soon. I’ve had JRA since age 8, almost 45 now, and have almost a lifetime of experiences. Like you, I don’t want people to feel sorry for me, but believe my story/experiences can help others with our disease. The understanding that it doesn’t have to define you came to me later rather than sooner, but hope to reach others sooner.

    God Bless You!

  • Mariah Z. Leach moderator
    5 years ago

    Hi Carlene – Thanks so much for taking the time to share your story. It sounds like you have really been through a lot but, I like your optimistic prayer! I have a similar mantra myself – “I have RA. It doesn’t have me!” I am glad to hear that you have a partner who is understanding and supportive – that is always such a blessing. And it’s great that you have a good relationship with your doctor as well. Please hang in there and remember that we are here to support you!

  • Carlene Hansen author
    5 years ago

    Dear Mariah,
    Thanks for your kind words. They are always helpful in our journey to battle the effects of disease.

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