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.



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