Be Your Own Superhero (The Afterword to My Story)

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“You’ve renamed yourself as the hero of your story instead of the victim,” she said.

I sat in my counselors office a couple of weeks ago and she immediately could sense there was something different about me. “You feel lighter,” she said. And she wasn’t talking about my appearance.

Not until I sat back and thought about the two and a half weeks of life that had happened since I’d last saw her did I realize what a profound impact writing out my story had on me.

You see, when you live with the reality of a chronic disease, it can be really easy to let it control your life. Before you know it, you’ve surrendered all power to it because it just seems easier that way. But in sharing my story, I was reminded that I am actually stronger than my disease. I have a choice. I have the ability to improve the symptoms.

That doesn’t mean every day will be a good day or that I’ll be magically healed or that I will be able to eat what I want without a second thought. But it does mean I have a say in the whole thing.

It was almost a year ago when a dear friend and mentor asked me to think about what I’d given power to in my life. It’s taken me almost 12 months, but I finally have an answer. For the last nine years I’ve given power to my disease. And that was just the beginning.

There is immense freedom in looking back and realizing all that you’ve survived, in being reminded of your strength and resilience. You no longer have to be waiting in fear for the other shoe to drop, because, well, if it does, you will survive that too. And you will survive because you are the hero of your story, not the victim of it.

But you know my favorite part? We are heroes not in spite of our stories, but because of them. Because of the whole of them – the highest highs, the lowest lows, the ugly cries, the bad mistakes, the incredible accomplishments – all of it. After all, we all know a hero doesn’t become a hero without fighting a few battles and defeating a few stubborn enemies.

Freedom Found (The Story Part 5)

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I watched this TED talk once about memory. I’ll be honest, I have absolutely no desire to repeat the last 9 years. But, I would not trade the person it has helped me become. So if that’s what it had to take, I’d do it again. Not happily, but I’d do it. I wouldn’t give up the freedom I’ve discovered through the journey.

There is great freedom in being able to move again, in not having to think twice about going to the grocery story or the mall or the movies or even the gym. When I first felt well enough to move again while living in Appleton, I started with a personal trainer at the YMCA. She tried to get me on an elliptical and three minutes in, my legs gave out. Today, I can do intervals on the elliptical for 45 minutes and still walk out the door of the gym. There is immense freedom in that.

A friend graciously offered to take some head-shots for me recently, and I realized something profound in the process. I was completely comfortable. I was completely comfortable in front of a camera because I’m more comfortable in my own skin than even I realize. I think that countless doctor’s visits and medical tests will help with that, but I know it’s more than that. It’s that when I realized I had control over my body and I claimed it, I became proud of the whole person I am and all of my “perfect imperfections” as John Legend calls them. There is massive freedom in that – in being able to accept and love and welcome your whole self.

TO BE CONTINUED

This journey isn’t over. I will forever have to work at feeling good. It means I drink things that are green and take lots of vitamins and make it a priority to go to the gym and get good sleep and and no longer love Italian food and these days even carry coconut milk in a thermos in my purse when I go out for coffee.

Yesterday I spent 5 hours with a friend prepping healthy, healing food for our bodies. Five hours. Yes, taking care of myself takes a lot of time. There are days it feels like a part-time job and that’s frustrating. But, the fact that I could be on my feet for 5 hours cooking and not be thoroughly exhausted today reminds me of the massive progress that healthy food has helped my body make. 

And all of that is worth it to not live in excruciating pain every day of my life. These days, there are more moments than not when I don’t even think about the painbecause it’s so slight.

I know not everyone’s story ends in healing. And I don’t take it for granted that mine has. But I also know that while we have an amazing Healing Father, he has also It’s my choice. My responsibility. My opportunity to partner with him in the healing process.

But How Did You Do It? – The Story Part 4

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Here we are in January 2015 and I am down to only two prescription meds and I have lost 100 pounds since my heaviest. 65 of those since moving to Nashville. It’s been a very, very slow, and not always steady, process. For me, the change only came through lifestyle shift. I had some tests at the Mayo Clinic recently and a doctor who hadn’t seen me before came into the exam room. The first thing he said was “I was looking at your chart and it seems you’ve lost a lot of weight, how did you do it?” “Well, I said, I got moving and started eating real food.” He kind of chuckled and said “Huh, imagine that.”

That sounds like over-simplifying. But, it’s not. Simple, however, doesn’t mean easy. Getting healthy isn’t rocket science, but you do have to put in the work, even when it’s hard. And you have to be willing to not only embrace change, but invite it, seek it out.

When I first moved to Nashville I had a friend who tried her hardest to convince me to drink green juice. I refused for well over two years. “I’ll eat green things, I said, but there is no way you are getting me to drink something that is green.” Today I love green juice and green smoothies. When I’m feeling a little sluggish, it’s the first thing I go for.

But it’s not just dietary change you have to accept or physical work you have to put in, you have to be willing to do work on your whole self. I honestly didn’t start really gaining traction in losing weight until I started seeing a counselor to get the emotional heart part of me healthy.

Even today, when I want to think that I can isolate one part of myself and just work on it, life reminds me otherwise. When I get stressed, my body feels it before my mind does. When something is off in my heart, when I’m not being honest with myself, I’m fatigued and my pain is worse. Every single piece of us is so intimately connected.

The other thing this journey has taught me is that any permanent change must begin deep within. I am convinced that had I set out to lose weight or look better, I wouldn’t have stuck with it. But, my motivation to feel better, to hopefully lessen the pain I lived in daily, that keeps you going in a different way.

Seeds of Change & A Move that Saved My Life – The Story Part 3

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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.