How it All Started (The Story Part 1)

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On the left – with my college roommate May 2007

I’ve always felt a bit silly talking about my health struggles. In the grand scheme of comparison there are people fighting much worse, much deadlier health battles. My health experiences may not have killed me physically, but they ushered in death of another kind. In sharing teeny tiny pieces of my healing story on social media recently,  I’ve been reminded I owe the story I’ve been given a voice. For while it has become common everyday life for me, it may impact others in a far greater way than I imagine.

If you’ve seen any photos of my from say five…six…seven years ago, and then today, you may be tempted to think this is a weight-loss story. But it’s not. It’s not a weigh-loss story or new diet story or get-skinny-so-I-love-my-body story. No, it’s a health story. A story of becoming a whole healthy person. So with that disclaimer, I begin.

IN THE BEGINNING
It hit me the day I realized that turning on and off the faucet had become a challenge. It was August of 2005 and I was preparing for my Sophomore year of college. I made an appointment with my doctor and it took him no more than a few minutes to refer me to a rheumatologist. A few weeks later, after much testing and countless questions, I was diagnosed with Rheumatoid Arthritis at the age of 20.

I started some medications and began adjusting to living with chronic pain. It wasn’t ideal, but it didn’t seem unbearable. If nothing else, I suddenly could relate in a whole different way to my aging grandmother’s who both suffer with various forms of arthritis and lupus.

Then came January. I’d returned to school in Milwaukee after visiting my family in Minnesota to spend the last two weeks of my Christmas vacation getting ready for another semester and put in overtime with my volunteer work. By the time classes started two weeks later I could hardly walk. I think back to those days and honestly I can’t recall what I felt. My memory of those days exists much more in isolated vivid moments than a whole picture.

I can remember sitting on the couch thinking to myself “I’m going to lift my foot off the ground” and not being able to do it. I can remember getting in my car and having to lift my feet in one at a time. I remember my roommate returning and not really understanding what I had tried explaining to her on the phone until she saw me literally have to crawl up the stairs, pulling myself hand-over-hand on the railing. I can remember telling my parents about it and them being equally confused until I went to Minnesota a few weeks later and couldn’t get into my dad’s truck. 

One of my first phone calls was to my rheumatologist who tried to convince me I’d injured my back and pinched a nerve. I knew that wasn’t it. He fit me into his schedule immediately. And upon seeing me, immediately referred me to a specialist at the Medical College of Wisconsin. His blood tests had told him a lot of what I didn’t have, but not what I did have. The specialist was to do some more sophisticated testing including slicing a piece of muscle out of my thigh for testing. There was also a full-body CT scan and a mammogram to make sure I didn’t have cancer somewhere in my body. Yes, I had my first mammogram at the age of 20. The auto-immune arthritis I had been diagnosed with a few months earlier made me more susceptible to virtually anything else that could go wrong in one’s body so they were being thorough.

An already underway process to get a second opinion on my arthritis diagnosis at the Mayo Clinic in Rochester, MN was expedited, and a few weeks later I was on a plane to Minnesota in search of answers and relief. 

The eventual diagnosis was given a different label by each of my doctors. One called it dermatomyositis. Another rheumatoid arthritis. And another a positive Jo-1 antibody inflammatory myopathy. All I knew was that I was in severe pain every day, had severe fatigue, and extreme weakness in my legs and upper arms.

With courage, Katie

One comment

  1. I love you huny and am so grateful that Father God has healed you and helped you become the wonderful young woman that you are. I remember being in Nursing School and you calling me with symptoms of your illness. It was hard to be a mom from so far away but I had to let you work it out on your own, being in school and all. I vividly remember you saying one day on the phone, "Mom, you don't understand. I literally have to crawl from the couch to the bathroom." You soon saw the doctor and got the ball rolling. I am grateful for all the people that stepped up and helped you on your journey when MN was so far away. I love you and look forward to the next chapter. Blessings always…..Love, Mom

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