One Year in Colorado

I have always enjoyed holidays. Anniversaries. Birthdays. There are so many reasons for this but at the core is the fact that these days stand out. They provide marks in the book of time that we can hold up and look back to. We can see where we are, and where we have come from.

I moved to Colorado a year ago today. At times it seems like yesterday, but often it seems like significantly longer. A year is a long time. Long enough to build fitness and lose it all over again. Long enough for a relationship to fall apart and slowly begin to repair. For a job to be amazing, boring and return to amazing once more.  Long enough for new passions to be kindled and old hobbies to be laid to rest. For distance to seem smaller and for the world to seem not so scary a place. It is long enough for the doors to open and for you to realize that you are not as young as you once felt. It is long enough for health to fail and old wounds to heal. Long enough for a strange new place to become home and a new group of people to become family.

Looking back at the year, there is so much that stands out. Much of it I have written about here, or posted about on twitter and facebook, but much of it has been little moments. Things like recieving an email saying thank you or a phone call from an old mentor now asking your opinion on something. Finding yourself standing on top of a mountain looking out at a world that once seemed to be an immeasurable place. Watching an old dog become young at the sight of snow, or drinking hot chocolate on a winter's day. Walking on a sidewalk and watching someone come towards you in the snow, just knowing that something great was about to happen. These little moments that take your breath away and that seem to happen so much more in Colorado.

I can not wait to see what another year brings.

Standing on top of mountains.

The little moments. 

The Last Post on RCD

I have sat down to write this post many times over the last couple weeks. Scribbles to sentences to pages but inevitably they have all ended up in my (now overflowing) trashcan. Considering that there is no recycling in our complex, you can see why this bothers me.

Since August I have been dealing with the ramifications and complications stemming from what is known as refractory (unresponsive) celiac disease, or RCD. Odd blood work numbers in May led to the diagnosis, which led to the discovery of abnormal tissue growth in the lining of my digestive system. I went on a slew of medications this past fall to try and bring down the inflammation in the tissue and to limit any further abnormal tissue growth. For a while it seemed to be working, then it wasn't, then it was again. The unknown seesaw known as the human body. 

Early last week I took my last round of immunosuppressants and steroids – designed to do everything mentioned earlier and push the RCD into a dormant state by essentially resetting my immune system. However, during the appointments that followed a new mass was discovered during a series of routine scans. I went in for an endoscopic mucosal resection on Friday and on Monday I sat down with the doctors to go over what was found and what my options would be moving forward.

They had not been able to remove all of the abnormal tissue growth and although they wanted to try another round of medications, or another surgery I chose to take a step back and see what happens. RCD can go into dormancy just as quickly as it flares up and my hope is that it has been beaten into submission for the time being. I will be undergoing periodic tests to ensure it has truly been mitigated but for now I am done tearing my body apart – physically and chemically.

This is not without some concern, but I have my reasons. Ever since we began decreasing the doses of medications I have been feeling better. Running, cycling, pilates, the list of things that I can enjoy once more goes on. My mood is better; I’m happier and significantly less depressed. Right now, being able to enjoy getting up every morning is amazing. I have a new found appreciation for sleeping through the night. 

I struggled with this post for the longest time because I did not want to sugar coat it, but neither did I want to paint an unrealistically dark picture. In the end this is something I will always have to be mindful of with my health, but it does not and will not affect my every day life. Long term it just means adjusting to a new normal.

Thanks to everyone for your kinds words, prayers, thoughts, lucky pigs and support. Being so far away from home made for more time alone in a hospital than I could ever keep track of but I hope you know that you all made a world of difference. I hope you never find yourself needing that same support, but if you do know that I will be there.

Here is to never speaking of RCD on this blog again.

Bad News Comes in Pairs

Today was rough, no way around it. After three months of putting my body through hell and medical treatments, I went in for routine tests that ended up anything but routine.

The scar tissue that had built up around my intestines  due to the RCD was supposed to decrease as my immune system became compromised, allowing it to heal without being attacked. Unfortunately, although my white blood cell count is incredibly low, the scar tissue has only proceeded to grow. The doctors at the point think it is likely growing on its own, rather than being caused by the immune system attacking it.

They're giving it until January and if it does not reduce in size the next step is to operate.

I finish school in four weeks and go home to Bloomington shortly after that for a long two weeks away from work before heading to Austin, TX for cyclocross nationals. Hopefully I will know more before then.

Three Miles

I am a little over two months into my RCD diagnosis. Two months of not exercising, of complete breakdowns on my part and being a perfect case study for the negative side effects of steroids and immunosuppressants. I have seen more of the hospital than anyone ought to, and the nurses at this point know which fruit juice I prefer when I come in. It's a glamorous life.

Yet after today, I am a little farther from giving up than I was. Three miles to be exact. The three miles that I ran today and yesterday that reminded me what it feels like to breath and not worry. Cycling may be what I do to take some time for my thoughts, but running is where I go to not think, or at least not think about the usual things. On my bike I think about work, school, training plans for athletes I coach, my training plans and a myriad of other stressors. When I run I think about friendships, relationships, Colorado, puppies, sunshine and gumdrops. Happy things.

The last two days have been amazing and although it possibly landed me in the hospital (again), I have been given permission to start working out again. The doctor is skeptical that I will be able to do much, but the general opinion is that it might make things a bit easier on me mentally. I do not intend to push it, if only because I know the consequences.

Awhile back and before the diagnosis I signed up for a marathon (bucket list item) next May. I am not sure if this is on the table still but I have mapped out a semblance of a plan to get me from here to there.  It focuses a lot on cross training with my true love, the bike, which hopefully will put less wear on my immune system. However, my hopes are realistic at this point and I am accepting the fact that failure as I define it may be in my future.

I come off the current rounds of medicine in mid to late December and at that point we wait and see if my immune system resets itself properly. If so I go back to normal life with the continued gluten free diet that I've had for the last five years, and hope that this was all just a fluke. I do not want to get into what happens if it does not reset properly, but simply put it would mean an end to any long term training plans on the bike or in running.

So, wish me luck because my tires are back at 110 PSI, and my shoes have gotten pulled out from the depths of the closet. At this point every mile is a victory, and three is even better!

Rock Bottom, it isn't so bad with pillows

It was only a matter of time. Pump your body full of steroids and immunosuppressents for long enough and the end result is inevitable. I just wish that rock bottom hadn't been quite so hard. A pillow or two would have been nice.

I stayed home sick the Friday before last weekend. By home I mean the hospital. Not a great way to start a long weekend in which my roommate was hosting two parties. I was exhausted but had promised a few months ago to do menu planning and food prep, and I was not about to back out my end of the deal. I'm tired of letting people down. Saturday found me sitting on a stool in the kitchen. I don't even have enough energy to stand for a couple hours to make dinner anymore. If I had to pinpoint a starting point for my fall to rock bottom, this would be it.

The next piece was a hike that I can usually run, but it instead left me crying in my car afterwards with my arms wrapped around myself as if trying to hold it together. The rest of the week brought eight hour work days followed by five hour marathon homework sessions. By today (Saturday) I was running on empty, with an entire week's worth of course work to get done before I leave on Tuesday. I had planned on going to a soccer game solo due to changed plans, but found I didn't even have the energy to even drive. Then I snapped at someone and set off a chain reaction of things that I feared the most. All of this found me crying on the phone to a friend from back home, terrified.

And that's when it happened. I said to her: "I wish they had never found what was wrong for me, at least then I could be blissfully ignorant."

What a load of bullshit. A wagon of "I'm feeling sorry for myself-ness".

Yes, the RCD diagnosis sucks. Yes, I hate not working out and I hate feeling like I can't hold myself together, but saying something like that is admitting defeat. If it was not for my RCD diagnosis, I would have been hospitalized as my body started to shut down, first through loss of essential vitamins, then through it attacking itself and slowly breaking down. I am lucky. I am blessed to be given the chance to get better and go back to normal. Not everyone gets that chance and there are so many who have it worse than me.

Anyways, while I am still scrambling to put back the pieces, rock bottom is starting to get a bit more comfortable. It is likely that i'll be back here again before this is all over, but at least I can leave some pillows for next time.

Last of the Good Days

This last weekend was an odd dichotomy of uplifting and discouraging. At this point I am a little over a month into my treatment for refractory celiac disease, a condition where my immune system begins to attack my body despite being on a gluten free diet. In the weeks since my diagnosis I have spent significant time curled up in bed or on the couch, too exhausted to do anything as my immune system is shut down by a drug cocktail of immunosuppressants and steroids. In addition to the daily medications I have time each week in the hospital, hooked up to IV meds to help hurry this process along. These tend to make the rest of whatever day it is miserable.

I spend a lot of time being sick to my stomach, and with my white blood cell count being so low, sick in general. When I hike, or do anything physical I often have to take long breaks every ten minutes or so even to move on. Hiding exhaustion from those around me is becoming more and more difficult, particularly since I want to spend time doing fun things with my friends and family. However, even this is tricky as more and more I lash out or gripe at those around me without meaning to. Talk about a ticking time bomb.

The good news from all of this is that the treatment is doing what it is supposed to. My white blood cell count has dropped dramatically from what it was - we are practically at half of normal levels now - and the inflammation around my intestines has decreased, likely allowing for more absorption of vitamins and nutrients. One the other side, this means that each day is becoming significantly harder than the one before it. Because of this, I was grateful for what is likely to be one of my last strong days for awhile.

This past Saturday was a wash due to hospital treatments, but on Sunday I was feeling strong enough to venture up to Divide, Colorado to hike the Horse-thief and Pancake Rock trail with a friend. Roughly 8 miles total, this trail was more difficult than I had intended and I was exhausted by the end of it, even with breaks every few minutes. However, the views were spectacular and it was a nice chance to get away from Colorado Springs.

We got back mid-afternoon and although all I wanted to do was sleep I managed to meet Norman for brunch at a local restaurant that has an entirely gluten free menu. Nomnomnom. Even with the low appetite I managed to work my way through one of the best pieces of french toast I have had in a long time. It was nice to just sit and talk, particularly since we hadn't seen much of each other due to travel conflicts.

Norman bonding with the mountain lion.

However, the day was just getting started at this point. Norman surprised me by recommending we go to the zoo, something that has been on my list since I moved here. On the car ride over I wondered if I could actually manage the entire zoo at that point, but there is something about certain people in my life that makes me feel stronger just being with them. In the end, it was an amazing day and I am so glad we went. I may have come home exhausted and gone right to bed, but it was something that made me feel better and still makes me smile, as tired as I am. Sometimes, it's worth the exhaustion to eek out a good day in advance of so many rough ones.

Probably the best giraffe exhibit I have seen.

Also. They had otters. If you have ever been to a zoo with me you know that means case closed on a good day. Almost as awesome as seals.

The beaver trying to escape.

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.