Being a Snowflake

I recently had a polite disagreement with an MS expert. His business is built on helping people with MS and we disagreed that the disease could be altered by changing a patient’s environment. 

I argued that diet, community, restoration, and exercise dramatically alters the direction of this disease. I defended my position by sharing my personal experience and his comeback was to remind me that MS is a snowflake disease. While we are all the same thing (diagnosed with MS) not one of us is the exact same. 

I would argue that he just won my argument and proved that was true for all chronic diseases.  Health is similar to a complex snowflake. There is not one easy answer or pill that will cure a disease. Chronic disease is influenced by the environment and the smallest habit modifications can have a lasting impact. It is almost impossible to compare another person living with the same diagnosis. We need to treat the person, and not the disease.

A snowflake is a result of a journey through the clouds from inception to its final resting place. Similarly, health is not defined by one moment in time whether it is good or bad because it is a long complex journey.

Eight years ago I gave up cereal, dairy, pasta, artificial sweeteners, english muffins, and  frozen yogurt. Those daily choices used to define my diet. I researched the importance of stress management and I recommitted to my health. My snowflake changed shape, but I was not cured.

Today, I am still down 40 pounds. I fantasize about cereal and english muffins, but they are not in my daily life. I meditate, I exercise. I practice regular yoga. Sometimes, I struggle with stress, and stay in bed eating my favorite caramels. My snowflake is constantly changing shape and it is unique to my journey.

During the holidays my disease took hold and I was living with an indescribable pain. After months, I wanted to throw in the towel. I was following the rules but weeping with pain at night. I thought it was unfair because I was doing so many things right.

For a brief moment I thought, f**k mediation just give me a bowl of Apple Cinnamon Cheerios with Skim Milk and and a banana. I would get angry thinking of people waking up pain-free downing bowls of cereal. Those non-meditating jerks were living a better life, so, why should I keep following all the rules?

Because, one good choice does not heal, and one bad choice does not make me sick. I am not the person I was 8 years ago or the same person I was last year. I will be a different person tomorrow,

Being kind to myself and patient with my body was important to heal this time. I visualized what throwing in the towel would look like. I wasn’t happier 8 years ago eating cereal every morning for breakfast. Eating frozen yogurt on the couch while I watched The Biggest Loser was comfortable but not fulfilling, so, why was I so angry? 

I was angry with the short term results, not the process. Honestly, the process is the best part. I love the person I have become in the past 8 years. I still love that person who ate frozen yogurt on the couch eight years ago. I need to accept and embrace my snowflake. I will never be angry with past choices because it has led me here.

Even when I get frustrated with the journey that will just help shape me and not destroy me.  I am stronger because of my pain. I am better because of my successes. I will have weak moments and phenomenal celebrations in my future.

My Road to 50 Miles

I have lived with lupus most of my life, and on the 8th Anniversary of my MS diagnosis, I ran the JFK 50 miler. I wouldn’t have considered running if my coach, business partner, and friend had not tricked me into training. I would not have survived the run without her.

The training was brutal! I had to train my body to do things that weren’t natural for me. Eating sugar again and eating sugar while running was a shock to my system. It was challenging but thanks to great public bathrooms, I survived. Running multiple times in a day and giving up on having good hair was tough, but in the end my legs could run two marathons in 48 hours without any side effects(except bad hair). My training plan was so good that I was over confident at the start line. It only took 6 hours of running the JFK 50 miler for me to begin to question my ability complete 50 miles in one day.

It was a difficult course that brought me through the Appalachian Trail for miles with blood soaked stones and runners with broken bones. Falling was common and a just a little scary for someone with MS. I felt like I should where a t-shirt that said, “You have no idea.” I kept thinking that it was irresponsible for someone with a balance issue to navigate this trail but I survived. I remember another runner saying, “You won’t win the race here but you could lose it.” Her words were in my head for miles and I made up the time on the flats.

The entire run was filled with pain, joy, and lessons.

The course is known for its support and I was not disappointed. Food, gatorade, water, Christmas cookies and even Santa was available. The volunteers and runners were the best part! The veteran runners loved offering advice and when you have endless miles to run any guidance is welcomed. People only wanted to finish and no one seemed to care about their time. I discovered that runners considered their past attempts as opportunities to learn and never failures. These veterans had great advice about slowing down and enjoying the experience and views.

And, then there were times that I was alone for a long periods and lived off the messages and supportive words I received before the run. I had a hard time falling asleep the night before because my phone kept alerting me to the flood of support.

Every once in awhile a medic on bike would ride past me with more words of encouragement like, “You are looking better than most of the people.” I started to get concerned for most of the people and questioned the logic of running this type of race. But, I also wondered how they knew just what to say to keep me going. Being reminded that I wasn’t alone in my pain and suffering gave me some weird type of solace. When things got really bad I thought of my daughter who reminded me to stop if my health was in jeopardy and weighed that against my desire to finish. I kept checking my body for any noticeable signs but felt strong.

Just like life you can prepare as much as you want but in reality it is in the moment that we learn how to run the race. The last 30 miles were tough and most runners would run/walk which lead to this amazing game of leapfrog. You would pass a struggling walker who would pass you in just a few feet. I would spend hours with the same people getting to know them at their most vulnerable moments which lead to a contest of supportive of words. “You are doing awesome.” “You are crushing it.” “Where are you from?” “You are probably a very fast marathon runner.” “Those are really short shorts, you must be freezing, but I am impressed.” “Please go ahead of me and run like the gazelle you are.” For a compliment hoar like me it was truly heavenly. I love giving as much as receiving when it comes to encouragement and this was a love fest for my type of people. Apparently, people who lacked the common sense to not sign up for a 50 miler were my people. I desperately wanted these strangers to cross the finish line.

In the end I finished in a respectable time. I received a medal that will be one of my proudest medals. I called my husband immediately to thank him for the years of support and quickly went to the medical tent. As soon as I listed my medical history I had every medical professional in the facility hovering around my cot. I always have to manage my chronic diseases but Dr. Google didn’t have any research articles of what to expect after running 50 miles with lupus and MS. I agreed to an ambulance ride because my daughters words were in my head.

The paramedics and intake nurse were fascinated with my disease management and had a lot of questions. I was reminded of the magnitude of the feat. A 46 year old women living with lupus and MS finished a 50 mile ultra marathon. I was discharged early because rest was more important than being observed at the hospital.,

The run was a great reminder of how I am surviving two chronic disease. I learned so much from training and running the race that will keep me moving forward as I face new roadblocks….and I will face new ones. Here are the top 10 things I learned:

1. Coffee shops have the best bathrooms.

2. I am only as good as my coach and my ability to listen to her.

3. I will always chose the path with no regrets.

4. Past attempts are not failures if you keep learning from them.

5. I feed off my community and their words.

6. Other peoples success fuels me.

7. I am not cured of chronic disease but I will have some great days.

8. Accepting the limits of diagnosis is challenging but necessary, especially for the people I love.

9. Grilled cheese at mile 32 is not appealing.

10. Check the weather before I pack shorts.