Kristen's Chronicles | Small Victories and Confronting Emotions

I walked down the lengthy hallway with my mom, following the random-colored tile squares on the floor. Around me were white walls with nurses and doctors hurrying by. I could smell the remnants of breakfast coming from the little cafeteria and the gift shop sat vacant with a bouquet of "Get Well" balloons bouncing gently. 

The cold, dry, and sterile air in the hospital was a stark difference from the rising temperature and thick humidity outside. It felt nice to walk into a cooler environment at first, but the appeal quickly vanished and it just became cold as I waited for my name to be called in labs. On the wall was a muted television flashing images of world leaders and stern-looking newscasters talking to each other through the screen. 

Thursday was my follow-up appointment with my primary care doctor in town. After being given the all-clear from my surgeon at Johns Hopkins almost a month ago, I felt it was time to sit down with my primary care doctor as a follow-up to my follow-up at Johns Hopkins. 

"You look great!" the nurse commented as she checked my vitals. I smiled. For once I had not made an appointment for something oozing, bleeding, infected, or going terribly wrong. In fact, it felt strange to report nothing too seriously wrong to the nurse since they first saw me last March. When you have been sick for a while it is sometimes hard to remember what it feels like to just be healthy. My primary care doctor is the one who prompted our journey to Johns Hopkins Hospital last August after telling my parents that I "was not going to make it" and urging them to seek help outside of the state because there was nothing left that any doctor or surgeon could do to help me within the state. My deadly combination of severe Ulcerative Colitis and a very antibiotic-resistant infection of C. Diff. was simply too much. 

That day, I sat in the chilly little room in little pain and very much so alive. 

My blood work has since returned and my levels were OK. My iron is still considerably low, but has raised slightly since my appointment a little over a month ago. Along with my iron, my vitamin D levels are also low. My hemoglobin is not where it should be, but definitely better than it has been in recent months. Thankfully, my insurance has approved a DEXA scan to check my bone density, which will be coming up in a couple of weeks! Needless to say, overall my health is improving for the first time in a very long time. Perhaps the biggest concern of my doctors now is my weight and nutrition. Being very underweight is additional stress on my body, but will just take time. For now, I am focused on walking and yoga to help condition my body once again. 

Even though my pain is subsiding and I am growing stronger and healthier each day, I am reminded of just how much my body has been through and just how weak it has gotten. In the middle of one of my yoga sessions the other day I laid flat on my back on my soft purple yoga mat. The exercise was focused on deep stretching the legs.

"Slowly sit back up in a seated position for the next movement," the yoga instructor through the screen instructed. 

I tried to pull myself up but it was as if a powerful, invisible force had me pinned to the ground. I tried to lift my head but it felt heavy like a bowling ball. I wiggled back and forth as if I could magically engage my core muscles and sit up. But after almost 30 seconds of struggling, I was now far behind the yoga routine. 

I stared up at the ceiling, frustrated and defeated, as the yoga routine continued on without me in the background. In my year of illness and three major abdominal surgeries, I was left with very little core strength. I had not realized the true effects of it until now, though. I could not even do a sit-up. I rolled onto my side and used my arms to hoist my body up, pausing the yoga routine. 

Building core strength up again after one major abdominal surgery it challenging, let alone three. For the first 6-8 weeks it is downright dangerous to place strain on the healing muscles. My local surgeon explained it to me in the best way, urging me to think of the abdominal wall as a complex system of muscles, all woven and intertwined with each other. When these muscles are cut it is as if you are cutting through a woven basket, weakening it at that point. Slowly, the muscles begin to pull back together, weaving the complex system once again. Although 2 of my 3 surgeries were done laparscopically, they still presented damage to the abdominal wall. My last surgery, however, involved a near 5 inch incision, greatly weakening my core. 

I have been cautious over the last 9 weeks not to place too much strain on the area, especially when I still had 7 staples ripping through my skin. Even now, there are visible sutures under the skin that have not yet dissolved that become relatively irritated when they are moved around.  

After my disheartening realization I have started to incorporate light core strengthening exercises into my daily routine to safely become stronger. It is going to take time and it is undoubtedly going to be challenging, but I will get there! Sometimes those little reminders, although defeating, are great at helping to remind me that I am still healing. 

The situation brought memories flooding back in from last fall when I returned home after my first surgery. I was only 72 pounds and had almost no muscle left. Coming from a lifetime of being active in track, cross-country, soccer, and just running on a daily basis to stay healthy, it was devastating for me to come home and really see what months of being seriously ill and major surgery had done to my body for the first time. I remember approaching the steps only to realize that I physically could not lift up my leg and foot to step up. My thighs were hollow and sunken in with just pointy bones sticking out. I collapsed onto the floor in tears. My parents then took each of my arms and lifted me up the stairs to my bedroom. It is memories like this that truly remind me just how far I have come and motivate me to keep going, no matter how hard it is. 

So for anyone out there that may feel like their current situation is never going to get better, trust me when I say that it does get better. The human body and mind are so much stronger and resilient than we often give them credit for. I know it can be frustrating, infuriating, devastating, and seem hopeless at times, but these battles were given to us for a reason. You may not know what that reason is right now, but when the time is right, it will present itself and everything will made sense. All of the struggle, all of the pain, and all of the heartbreak will finally make sense. I have already met so many extremely kind, talented, and strong people fighting some of the hardest battles you could imagine while also spreading awareness of their illnesses and providing others struggling with a support system. 

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This week brought a new week of lessons and personal victories in my recovery. I always try to maintain a positive attitude towards my recovery, but please do not let that make you think that I do not have my challenging moments. There are many moments when I can feel the frustration and sadness well up inside of me. For anyone battling a chronic illness, you are undoubtedly familiar with the emotional roller coaster that comes with your illness.

Here is the thing: we are only human and it is 100% OK to feel like that sometimes.

Instead of dismissing my feelings and trying to bottle them up, I always embrace them. I will allow myself to grieve, cry, rant- whatever it takes. Most of the time, I end up having a long talk with my mom to acknowledge my feelings and lift them off my shoulders. I always feel 110% better afterwards. I have also found that spending time in nature or going on a long walk can help to clear my mind and bring me back to the present. Again, we are only human. 

Stay strong, spoonies! 

Keep and eye out for my next blog post on what I kept in my ileostomy emergency kit and how I transformed it into my j-pouch emergency kit- coming soon! 

"Alive. Blessed. Grateful."

- Kristen