Wednesday, October 29, 2014

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!

Saturday, October 18, 2014

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.

Thursday, October 9, 2014

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.