My Journey that Led to Northwestern

Rewind to a little over three years ago. I was going to see a sports medicine doctor in East Lansing at Michigan State University, where I had just finished my degree at and was planning on starting grad school the following year. My entire lower half of my body felt like it was asleep, I had been going to crossfit regularly and was 100 percent certain I hurt my back doing deadlifts, he would send me to a few PT sessions and I would be back to Spartan Crossfit in no time.

In the mean time I had a very special guy conveniently pop into my life. Gavin and I started talking the day after my initial appointment at MSU, but let’s just put that thought on hold for a few.

After I had completed all of the very unpleasant tests that my doctor had ordered, blood work, MRIs, an EMG, you know, to just rule everything out, I returned to my follow up appointment at MSU. My mom insisted on taking me but I went in by myself. My doctor sat down and looked at me, and I knew something was very, very wrong. He told me that he loves being a doctor, but this was the part of his job he absolutely hated. He told me that after looked at my scans, it was very obvious that I had Multiple Sclerosis. He then proceeded to tell me about his very good friend who has MS and regularly does triathlons. He told me this is not a death sentence and that its very possible for me to live a somewhat normal life if I am proactive about my disease and really take care of myself. He walked me out of my room, gave me a big hug and let me cry on his shoulder for a few moments. He told me that he had no doubt in his mind that I could handle this and somehow turn this into something positive. He then proceeded to help me get an appointment set up with one of the neurologists at MSU.

After that appointment, I walked out to get in the car with my mom. I just started crying all over again and gave her the MS pamphlet my doctor sent me home with. She started crying too. While she was waiting for me at my appointment she went to J.Crew to pick out an outfit she knew I wanted. She put it on hold and was planning on surprising me with a shopping trip afterwards and buying me that outfit in celebration of the good news I had received. When she told me I said I still wanted to go, we walked out as soon as we walked in. I couldn’t even process a single thought, so trying to pick out my next going out outfit was a little much. We decided to go to dinner and I remember I had tears running down my face while I was trying to pretend to eat my dinner by playing with my food with my fork. I told her I had started talking to “THE Gavin Bowen”, it instantly changed the mood of dinner, I had something happy to talk about and to take my mind off of things. I’ll talk about it more in a later post but I’ve known Gavin for a very long time, he was 5 years older than me, my elementary school crush, the guy me and my 7th grade friends were literally obsessed with, the guy we also completely forgot about the minute he graduated high school and moved away, and he just so happened to walk back into my life the week I get diagnosed with MS. We had a pretty good rest of dinner considering the circumstances stances and my mom dropped me off at my apartment and she made the two hour drive back home.

I decided I needed to go for a run, as soon as a finished my 3 miles I get a text from Gavin, “Hey, how’d your appointment go today?”. My heart sank, why would someone want to get into a new relationship with someone who had just been diagnosed with a terrible, terrible disease? I decided to just tell him. He responded with saying how sorry he was, but just remember, “you might have MS, but it doesn’t have you.”. We had our first date two weeks later, it was so simple and so perfect, I knew that very day we’d get married. Funny how things work out.

About six months later, a series of very terrible doctors appointments led me to the Cleveland Clinic, one of the most prestigious hospitals when it comes to MS. I absolutely did not want to go on medicine, I had read the Wahls Protocol and was determined that changing my lifestyle even more drastically than I already had was what going to help me. However, my parents really, really pushed for medicine, and by the look on my dad’s face the moment my neurologist said “If this was my daughter theres no way in the world I would let her not take medicine for this”, I knew I was going to go on it. She decided to put me on a drug called Tecfidera, it was a new drug, she told me it was 80 percent effective for Relapsing and Remitting MS and that it had very little side effects associated with it. I agreed to try 1 medicine, (while sticking to my Paleo-ish diet) and if it didn’t work, or I had side effects from it, I was done. I started the Tecfidera and for two and a half years my scans were clean. The Tecfidera was working like we had hoped and I experienced no effects from my medicine, to my knowledge.

My three year appointment was coming up. A few months before that I quit my job, it wasn’t only a job, it was my dream job, working in my dream salon, with my dream boss. She laughs when I say this, but Kelli Mason is a hair god, she’s practically famous in the hair world and I landed a job as her assistant. I had just finished her 6 month”residency” program I had been taking my own clients and, in my opinion, I was kicking butt. But then I started experiencing a lot of symptoms, and my eyes were not seeing the greatest, making cutting hair very difficult, although to others I appeared to be my completely normal healthy self. I wasn’t. I called my team at Cleveland and told them what was going on, they assured me that I was experiencing symptoms of anxiety and I wasn’t having a flare up. They told me to go to the nearest ER to make sure. I went to the ER, they gave me a Xanax pill and said the same thing. They said the stress of my job was to much for me and that maybe I needed to find a new one because with MS I am supposed to keep my stress level as low as possible. So I quit. A week later I had my 6 month MRI for Cleveland.

In August I had what marked my 3 year appointment. Gavin and I just got married about a month ago and I felt great. Despite feeling okay, they found 7 enhancing lesions on my brain. My medicine was not working like they had thought. Surprise, it wasn’t “just anxiety”. Cleveland gave me two different medicines they thought I should try. The thought of continuing to poison my body with another daily pill just made me cringe. I gave myself two options. 1. I get a stem cell transplant from Northwestern. 2.  find a really good functional medicine doctor who can help guide me through healing my body naturally. After thinking about and fighting it for about a month, Gavin and I decided to give Northwestern a shot first to see if I would be approved for the transplant. I told myself that if I get approved it’s what I’m meant to do, if they say no, option 2 is the right choice.

Well, Dr. Burt at Northwestern University Hospital approved me yesterday for the transplant, and that moment I knew it was what I was going to do.

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