Last weekend I ran a 50 miler. My younger brother, Sam, invited me out to Missoula, Montana to help me finally realize this pie-in-the-sky dream I've had for the past few years. This flat-lander managed to run 51.5 miles in 15.25 hours with 7500 ft of elevation gain and loss. No easy feat for the average healthy runner. And no easy feat for a person living with chronic diseases.
Many people live with chronic diseases. A chronic disease is defined simply as a disease lasting more than three months and is generally considered incurable. They include a whole host of common diseases like diabetes, cardiovascular disease, asthma, rheumatoid arthritis...the list goes on and on. Living with any of these diseases is a daily struggle, don't let anyone kid you. I don't think you truly understand these struggles until you develop a chronic disease. And then your life changes.
Mine changed in early 2014. At my office's holiday party the month before, I drank one martini, went home, and vomited the rest of the night. My body did not react well to the alcohol. In hindsight, I can now see other small tell-tell signs that my body was revolting. I had multiple sinus infections that winter and in January 2014 my B-12 levels had hit an all-time low (they had been deficient years before I became a vegetarian or vegan). Every time I stood up, I'd find myself sitting on the floor a few moments later without remembering how I got from point A to point B. My mediocre primary care physician had been lackadaisically treating my B-12 deficiency for years with random level testings, pills, and injections every few months. A few weeks after asking (and being denied) an extra injection, I had blood drawn and the results showed I was extremely deficient and was told to come in immediately for an injection. Needless to say I asked for a new doctor—and received a life savor of one. At the first appointment, my new doctor tested me for a rare disease called Pernicious Anemia and bingo, we had an answer.
My brother ended up mapping out 50 miles in the Rattlesnake Wilderness area to include a dropout option at the halfway point. His friend, Billy, was going to spend the day with my husband, Mark, supporting us by dropping water at a spot along the way and and then meeting us at the 25 mile point and again at the end. It was mentally important to me that I had the option to throw in the towel at 25 miles. Although by now I have completed half a dozen ultramarathon races (any distance over 26.2 miles), they have all be supported races on looped courses. This was to be an out and back course, starting at an altitude higher than any race I have ever run. I live and run at sea level, so when I say I am a flat-lander I am not joking around. We started at the Rattlesnake Wilderness trail head at 5:30 am as the sun was coming up. The trail from Franklin Bridge to Mineral Peak was our first big climb going up 3000 feet and lasting about 5 miles. That section alone almost killed me and we were only a half marathon into the run. Luckily the views made up for it.
Less than a month after my Pernicious Anemia diagnosis and after starting a rigorous treatment for it, I quickly started to deteriorate again. But this was different and it was scarier. In February 2014, I started to get uncontrollable tremors and had a hard time walking straight. I needed my husband or a wall to be able to walk without falling over. My mind immediately went to Parkinson's or MS and that terrified me. My new doctor saw me right away and did a litany of blood tests first thing the following morning. One of the things he tested was my cortisol level, which came back too low. He then tested my ACTH levels from my pituitary gland, which came back low as well. Bingo, we had another answer.
Adrenal Insufficiency. Another rare disease. Another life sentence. It means my body doesn't produce its stress hormone—like, at all. And you need cortisol—like, to live. I take steroids to get out of bed in the morning and then every four hours during the day until I go to bed at night. And then I start all over again the next morning. If I get sick, I have to take extra steroids to fight my infection. If I have surgery, I have to have steroids in my IV so my body doesn't go into crisis. If I go for a long run, I have to take extra steroids every few miles to keep up with the added demand. I have to guess how much steroids I need at any given moment because a normal person's adrenal gland secretes cortisol in response to what their body needs in different situations. It would produce more cortisol if you were having a job interview than it would if you were at your desk working. On the flip side, I also have to try to live on the bare minimum dosage so that I don't take too much, which can cause other health problems. Not too tricky if I am just living my normal home-to-work-to-home life. Extremely tricky when trying to be an endurance runner. For this run, Sam set his cell phone alarm to go off every 40 minutes to remind me to take an extra dose of steroids. On a normal day, I take a total of 20 mg of steroids. On this day, I took 67 mg—over 3 times my daily dose. And it turned out to be the perfect amount. I also carried in my pack 3 vials of liquid injectable steroids in case of emergency, which we thankfully never needed.
After leaving Mineral Peak, we made our way to Sheep Mountain on an old logging road. Although it was still morning and not too hot yet, we both knew that this unshaded stretch of road was going to be a challenge on the way back in the afternoon. Miles 20 to 25 were my favorite part of the whole run and they left me invigorated as we arrived at the halfway point and meet Mark and Billy. I ate a gluten-free peanut butter sandwich, some watermelon, and refilled my water supply. There was no way I was quitting. Time to turn around and do it all over again in reverse.
I told a few friends that running this 50 miler was the hardest thing I have ever done in my life, but that's not actually true. Clawing my way out of my disease stump was. You see, going from healthy to being saddled with the knowledge that you have two incurable chronic rare diseases was devastating. I became depressed. I snapped at my husband constantly. I wallowed in the depths of despair. Quite simply, I gave in to it. Poor me. It's easy to just give up and to start crocheting doilies in your mind. It's comfortable. It's strangely safe. I had a great excuse to just sit there with my two rare diseases and make a nest. And I promise you, I wanted to...until I didn't. It took a few months for me to decide to try and run again. I had to start over with just walking for more than a mile and then started adding in running intervals. I made my way back to running 5k, a distance I had previously taken for granted. I was slowly figuring out how to run on a body that can't handle stress on its own.
That 5 mile unshaded stretch along the logging road in the afternoon did end up being the most challenging part of our 50 mile run. It was all uphill and it was hot. We finally made it back up to Mineral Peak and both got excited that we were in the home stretch with only a half marathon distance to go. The downhill stretch from Mineral Peak back to Franklin Bridge was almost unrunnable and it took us longer than we thought to make our way back down to Rattlesnake Creek.
We refilled our water in the creek (using a filter) and started a slow shuffle towards the end. Mark and Billy trekked out a few miles to help walk us in and we were cheered on at our unoffical finish line by Sam's wonderful wife and my two nieces. We made it in just before sunset. It took a few hours more than we estimated, but we made it.
This finish was bitter sweet. There was no one there putting a medal around my neck, no large crowds and fanfare. There was simply the knowledge that we beat the odds. My husband gave me a kiss and Sam gave me a big hug as I whispered "thank you" into his ear. He gave me the greatest gift possible—supported opportunity. And I ran with it.
In the US, a disease is considered rare when it affects less than 200,000 Americans at a time. How do you get two rare diseases in two months? You win the damn lottery. I often tell people that getting these two rare diseases is the best thing that could ever happen to me. It woke me up and made me realize what was important. Not my job and not my possessions, but my husband, my family, my friends, maple syrup, and that comforting feeling I get when I lace up my running shoes and greet the morning.
Running 50 miles with my conditions is probably not all that advisable. I spent 6 months getting the blessings of each of my specialists and preparing myself both mentally and physically for this. My message to anyone with a chronic illness is to not set up residence in your disease. You don't have to be an ultramarathoner to live large. It will mean something completely different to you than it does for me. No two diseases are comparable, just as no two people with the same disease are comparable. The premise of living large is to constantly be doing things to challenge and inspire yourself. For you. Not for me or your family or your doctor or the woman in the next cubical to you. Just for you.
You might be wondering why in the world I would risk my health and try and run 50 miles. The reason is because I had to prove to myself that these two diseases won't dictate my life. I promise you, there isn't anything special about me. We all have our tales of woes. I simply refuse to let mine define me.
And if you aren't someone living with a chronic disease, my message to you is to make sure you don't wait for a rare disease diagnosis to live this type of life.
Life is short, even when it is long. So every once in a while, blow your own damn mind.
P.S. Rare diseases get little scientific interest and even less research funding. Organizations like NORD (National Organization for Rare Disorders) provide information for people with rare diseases and advocates for important research dollars. If you are inspired by my story, please consider donating to NORD.