Seeds of Change & A Move that Saved My Life

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Great Wall of China – May 2011. I was still amazed I was able to climb all the stairs & hills & still be standing.

If you’re just joining, here’s where we left off with the story.

Not really knowing what I was going to do after college, I eventually ended up moving to Appleton, WI just a few hours north to help start a church. My health was still a roller coaster ride of medications, infusion treatments, fatigue, and pain. As more medications had adverse effects on my body, I was quickly losing options. I was still getting several rounds of pneumonia and sinus infections during the winter months and was on high alert for sickness all of the time.

A year or so into the church thing, I was finally feeling well enough to begin some regular physical activity. Nothing more vigorous than walking, but after three and a half years, being able to walk a block or two was progress. I was still on way too many medications and had fallen into the medication domino game where you start taking meds to treat side effects of other meds.

THE SEEDS OF CHANGE
I don’t recall when it happened, exactly, but somewhere along the way my dad encouraged me to go see a holistic doctor down in Chicago one summer. The drives got old real quick. But, the visits I made to Dr. Mercola’s office planted the seeds that perhaps there was a better way to heal my body – things like real food and exercise and vitamins.

By March of 2010 I was miserable in every way. I wasn’t physically making progress because stress and unhappiness with my job were weighing me down. After months of resisting it, I decided to leave that job and ended up in Nashville, TN. That was a move that may have just saved my life.

CHANGE IS THE BIRTHPLACE OF NEW LIFE
I’m really not sure where I’d be today had I chosen miserable-but-comfortable over unknown and risky. While it hasn’t been easy, that dramatic transition has given me the motivation and space to do the work to get healthy. Not to get skinny or lose weight, but to become a whole, healthy person.

In the beginning, my health was still quite up and down. But, as I settled in, started researching how food effects my body, and eliminating stress, things slowly started quieting down. It was May of 2010 when I realized that I was finally on the road to healing. I was preparing to take a month long trip to China and went to see my rheumatologist to make sure everything was stable before I headed off to a foreign country. The lab results came back and I emailed him to confirm. His response was “Pick up your bed and go to China.” I sat and cried in a Starbucks as I read that.

So Much For That Life Plan (The Story Part 2)

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College graduation – May 2008

My plan to take 20+ credits a semester was derailed as I contemplated dropping out of college all together. In the end I decided to try to stick it out by cutting to 13 credits, just enough to stay full time and keep my academic scholarship.

Navigating our small old college campus in the Wisconsin snow and ice proved to be extremely challenging. I found routes I’d never considered to find elevators to replace stairs and hills. I couldn’t do my own laundry, grocery shopping was an all out exhausting process, the mall was unthinkable. I even remember going to the movies and realizing it required altering my seat choice to avoid stairs. Needless to say, my college roommate was a saint.

I can vividly remember one fight she and I had. It’s the only one I remember, but it wasn’t pretty. The ultimate driving force was that I was unhappy, miserable, in pain all of the time and she had essentially become a caretaker in my life because there was so much I couldn’t do. My compromised immune system meant I got sick often and so many daily activities were now not so ordinary or simple.

The months and years that followed included a series of medication trials and errors. Some didn’t work. Others caused other health problems to spring up. And others I had extreme adverse reactions to. One of the first they tried was called Imuran. It was fine at first and then I started throwing up…often. Without a fever or other symptoms, I was convinced it was my medication. I remember going off of it and finally being able to keep food down. But my doctor’s wanted me to try it one more time…you know, just to be absolutely sure it was the medication. My roommate and I decided Cracker Barrel sounded amazing for dinner one night and afterwards the medication ruined that meal. I still can’t eat their corn or chicken to this day.

I’ve only been hospitalized once in my life and it was the Fall after I first got diagnosed. They decided to try a new treatment called IVIG (a helpful acronym for intravenous immunoglobulin) After an initial five day hospital stay with two infusions a day, I visited the infusion clinic two days in a row for four to eight hours a day about every three weeks for almost the next year. You can see how keeping up with college might become difficult.

Plan B

Three years, one year longer than planned, and a modified student teaching placement that ended me in bed with the flu for a solid month later, I graduated from college. I look back at pictures from college graduation and it’s hard to believe it’s me. I had never been a particularly healthy or in shape person, but at the time I didn’t realize how out of control it had gotten because of my medications and lack of movement.

Teaching was all I had wanted to do my entire life. Sure, other ideas had momentarily passed my mind, but I always came back to teaching. But, thankfully my passion for teaching had fizzled somewhere along the way because I couldn’t have physically been a full-time teacher.

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.

The Year of the Comeback

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Since I moved to Nashville 4.5 years ago, life has been non-stop change & growth. And sometimes growth & change can happen so fast that you feel like you lose yourself in the process – like you don’t know who you are anymore.

This time a year ago I chose revival to be my word for 2014. I had dreams of feeling alive again rather than in a perpetual state of blah. But a year later I’m left disappointed that revival hasn’t happened. What’s even more disappointing is realizing it was my own fault. “I just want to feel like myself again” I’ve been saying.

But, if I’m really honest that’s not ultimately the goal – I can’t, nor do I want to be, the person I HAVE been. 

When a sports team makes a comeback it’s because they have a “come to Jesus moment” & decide to work. They decide to push – hard. They decide to lay it all on the line, to be all in. They decide that knowing they gave it all they had is ultimately the greatest success no matter the outcome of the competition. And they start playing the game differently because they know different is the only thing that can change the course.

So, 2015 will be the year of the comeback – not going back to my old self, but simply being comfortable in my own skin again.

ps – This shall be my theme song for the year
pss – This is my favorite comeback story I’ve heard recently

Show Me Your Scars

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Show me your scars. Tell me your battle stories – don’t hold back the details, I want to hear it all. The heartbreak and loss and grief. The hard times when joy was merely a discipline, not a feeling. Tell me of the times when you wanted to give up, when pure adrenaline kept you holding on. Be honest about your questions and your doubt. About the times when you had to reconcile faith with reality and the days when you weren’t sure if that was really possible.

Show me your scars with pride because they are evidence that you survived. That you’ve fought hard and your heart is better for it. Your scars have made you resilient. They’re the birthplace of your courage. Signs of your humble strength.

Show me your scars – the dark places where light shines through. The emptiness now filled with connection. Show me your scars and I know it will be safe to show you mine.

Addicted to Adventure

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My name is Katie & I am an adventure addict. Any personality test I take will tell you I thrive on the spontaneous. That I get bored easily. That I’m not satisfied with status quo but rather individuality.

And all of those tests would be accurate. But can I be really honest? I am suffering from adventure fatigue.  

Too often I feel like I am simply collecting experiences for the sake of experiences. Experiences are what shape & mold us, yes, but I’m beginning to believe that doesn’t happen without some curating. 

We live in a culture that has encouraged in us a fear of missing out so we say yes to everything. But I’m beginning to fear missing out in a different way – the depth of life I miss out on because I want to keep my options open rather than committing to something. 

I have a wide variety of interests & I’m a people pleaser. So naturally “no” is nearly non-existent in my vocabulary. But I’m wrestling with how to change that because my entire being is desperate to be whole. And I become more convinced that whole isn’t possible without saying no to a lot of things. A lot of good things. Maybe even some great things. All to create space for the best things – those I deeply value & am passionate about.

I am beginning to wonder what my life would be like if I became a curator of experiences rather than a collector. If I had an end goal in mind & those experiences were stepping stones rather than distractions.

But first, I have to do the work of figuring out what that end goal is. Endless adventure does a really good job of filling time, of keeping you busy & therefore thinking you’re achieving something. And while there may be small achievements along the wandering path, what do they really mean if they don’t move you in the direction of your purpose?