Monday, September 15, 2014

Are you all in?

Are you all in? At first it seems like a fairly simple question, but when my coach posed it to me three months ago, it did not seem very simple at all. I will confess, at the time he asked me it had absolutely nothing to do with training or my recent diagnosis and everything to do with the fact that someone important to me was possibly leaving for longer than I had expected. Mark is often more psychologist than coach and at that time he had some background that provided some desperately needed perspective. His question, “Are you all in?” was enough to make me realize that not matter what I would make the situation work.  I already knew the answer; I was all in and had been since the very first day, I just didn't realize it.

Fast-forward to a week ago and this question kept rolling through my mind as I was given the RCD diagnosis. During the course of the day I had been given lots of advice, things like “make sure you get plenty of sleep” or, “you should eat more”. Both of these are great, but when side effects of the RCD drugs include insomnia and loss of appetite, these are not under my control. Are you all in? Now that was under my control. That was something I could focus on.

The afternoon of my diagnosis, I bought new running shoes. My way of trying not to give in.

Being all in means not giving up, it means not pausing to let fear keep you from chasing what you want – the risks, a broken heart or in this case the possibility of Type I becoming Type II, are secondary. This has been further broken down into two more pieces of advice that I have received.

The first is simple. Don’t blink. Know that you stood in front of the monster without fear, screaming into oblivion. Blinking is giving something power over you; just that moment of pause is enough for fear to take root.  Easier said than done, but it is one of those pieces of advice that serves more as a pep talk than actual advice. Sometimes you need a pep talk.

The second is more practical. Make the good days great. From what I have been told, particularly in regards to the side effects of the medication cocktail I am on, it will get worse before it gets better. There will be days where I feel like I am fine, and there will be days where even getting out of bed is a struggle. Since there is no storing up energy for a rainy day, it is better to take the days that I feel fine and make them great, something to smile about on the bad days.

Speaking of making the good days great, I had my first event as Race Director this last weekend. Running the collegiate track race for the RMCCC was an absolute pleasure, and reminded me why I came to Colorado in the first place. 

I had initially targeted five cyclo-cross races for this fall, but those are out the door (USADA violations if I was to race with the drug cocktail, not to mention the fact that my immune system is currently being intentionally broken). I had planned on running a half marathon with my brother while home over Christmas, and I am signed up for my first marathon in May (eep!). Those may not be in the cards right now, but I’m not changing my plans yet in the hopes that it will give me something to work for. Ask me in a month and maybe things will be different, but for now I’m trying not to blink. I hiked/ran six miles with my friend Tasha yesterday at Section 16, and today there was barely enough energy to get me to the mailbox and back.

This was in part because today was my first day on the full cocktail of medications for Refractory Celiac Disease. Because so few people are diagnosed with RCD, it is very much trial and error in terms of dosage, which has made the last week less than fun. However, when I got home I found a box at the door, and inside was a Hulk action figure. It even says HULK SMASH! Sometimes, it’s the little things that make the bad days okay.

So for now, there is no training plan but listening to my body. The only weekly schedule I have is four words long. Are you all in?

HULK SMASH! From Kurt. Literally the best thing from today. 

Tuesday, September 9, 2014

The Upbeat

I did not want to put up the doom and gloom diagnosis post without putting something a bit more upbeat up as well. With summer winding down the weeks have been flying! During the course of this mad dash towards fall I ran my first half-marathon as part of my 100 Before 25 goal. As a self-proclaimed plodder when it comes to running this was something I wanted to do to force myself out of my comfort zone. It worked.

Yup. I have some pretty awesome people in my life. 

After four months of running I found myself standing with a bunch of other crazy people at 6:30am. I can only assume it was some sort of group insanity that occurred when each of us hit the sign-up button. Insanity aside though, I had a blast! I managed to keep a very even pace for 3/4 of the race and it seemed to be the perfect course as it followed the Santa Fe trail upriver. Between friends near the halfway point, and a coworker running the last bit with me I had plenty of support and managed to finish with a smile on my face!

How can you NOT smile when you have a Nemo balloon?

ADT marked exactly six months since I moved to Colorado. I have been so fortunate to have made some amazing friends since moving, and life out here would be so completely different without them. On top of such great friends there has been adventures galore, a job I love and some great riding (crashing). The next six months are likely to be crazy due to lots of travel for work and dealing with RCD but I can not wait to see what Colorado has in store!

Colorado Balloon Festival, a true sign that fall is coming. Also likely the last one. 

Adjective: Refractory

I heard the doctor, but what did he say?
I knew I was fine about this time yesterday.
I don’t need answers
I just need some peace
– Ben Rector, When a Heart Breaks

Have you ever considered the power of an adjective? You are not just an athlete; you are fast, slow, good and bad. Adjectives judge. The food at your local taco stand is spicy, the guy you are dating is wonderful, the puppy at the park is adorable.  Adjectives are watercolors over a pencil drawing.

I recently learned even more about the power of adjectives and their ability to bring questions and fear.  My freshman year of college (forever ago it seems) I was diagnosed with celiac disease, common knowledge to those of you reading this. Not ideal timing but I made it work and for me following a gluten free diet stopped the autoimmune reactions. In the process I gained a lot of strength I never realized was missing and managed to take training and racing up a notch. However, recently this trend reversed and I started to see significant red flags in my blood chemistry. Vitamin D levels reached a low of 4 then 2ng/mL several months ago and soon many other vitamin and mineral levels followed. Numerous tests, hypothesis and scans later revealed a new adjective.

Refractory. Meaning difficult to control or deal with. What it means to me is that, for some reason doctors cannot figure out, my celiac disease has decided not to be managed by a gluten free diet alone anymore, leading to a flare up. Refractory Celiac Disease. Now there is a scary adjective, one that hides in the closet at night and keeps you awake with shadows.

I’ll leave out the nitty gritty of the treatment plan, but it does include a cocktail of drugs that will pretty much murder my immune system in an attempt to reset the autoimmune reaction. Supposedly exercise may not be an option, and racing is out even before the whole USADA issue is factored in. Apparently I will have quite the Bruce Banner/Hulk dichotomy going on. The ability to leap buildings, fight monsters and pick up buses? Yeah, I’m hoping that comes out of this. HULK SMASH!

Long story short, I think I underestimated celiac disease. It is not a fad diet, a weight loss success story or a juice cleanse. It is an autoimmune disease that can and will damage your body with the same tools used to protect it. I won’t make the mistake of underestimating it again.