Month: October 2017

Battle Ready!

One Day in Auld Reekie

Soon after, I had my first biologics infusion; to say I was apprehensive was an understatement yet I knew the alternative so I heeded my GI’s advice and began aggressive treatment. Years earlier, Mark, my friend and Iraq War Veteran from UK, had painted war paint on our faces and coached me until I perfected the look of “battle readiness”. He mentioned I might need it one day – his sixth sense was right on! In retrospect I should’ve painted all our faces the day my parents and I headed out the door for my first treatment; it would’ve made for a memorable day for everyone.

The super administering nurse noticed the cheery pool float – turned donut I brought to sit on, and confidently said that before long I wouldn’t need it (for a while she was right)! She was encouraging about the whole infusion process and results. I talked with another Crohn’s patient there for her first infusion and was amazed that she could eat potato chips, and not be bothered. After infusion, I felt quite better and about 3 days later I saw signs of progress. Awhile later the pain and cramps began to lessen; I cautiously allowed myself to believe that I was not sentenced to a poor quality of life. During next infusion, I spoke with another Crohn’s Disease patient who described himself with actually having a life after biologics, happily stating that he “felt like he could lift a car” after his very first infusion. This disease is indeed hellish, and to finally have relief is monumental to anyone with Ulcerative Colitis and/or Crohn’s Disease. My superb parents commented that I looked better after that first treatment!

A good while into biologics, I remember my self-less mom sitting with me one day; she had bought GF pizza crusts and sautéed ground beef with onions and garlic and made white pizza for me (I could not tolerate tomato in any form). I ate like there was no tomorrow, she marveled and commented how glad she was to see me with an appetite, and able to eat something besides pureed vegetables or broth.

A note about food sensitivities, you the patient know your body best so listen to and respect how your body reacts to triggers. I began having reactions to gluten a few months before diagnosis, now I strictly consume GF, lactose free only foods and no beef. When I could afford it I was tested for food sensitivities, a test well worth the cost; for someone who may not know what ails them, I suggest being tested, otherwise common sense is the best alternative – avoid food triggers at all costs. Respect the signals your body gives – both good and bad, for we are granted this one life and we must make the most of it. You owe it to yourself. YOU ARE WORTH IT!

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Home Sweet Home

 Eventually, the Erythema Nodosum dissipated. The day I was released from hospital was December 23. I was quite happy to be home with family for this birthday celebration; I imagine my parents raced down the interstate for me. Their delight when they came into my room was contagious; they came to bring their grown baby girl home, and the looks on their beautiful, and much welcomed faces as they entered my room, are ones I will indelibly forever remember.

I don’t recall much about that Christmas, only how my family surrounded and prayed for me, mirroring the way I felt with their eyes. My infectiously delightful nieces and nephews just did not know how to react, seeing their once independent “go getter auntie”, sourced to a chair, with life barely etched into my persona. Our friend Mark visited, and described me as looking like “death warmed over.” My ever protective, watchful brothers, having known me one way all their lives, now saw someone they didn’t really recognize. Those few I kept within my circle championed around me, quietly rallying for me to keep trying. I could’ve cried. God, in His immense mercy, chose to spare me, and bless me with a loving, supportive family and a place to call home. Along with celebrating Jesus birthday – a miracle on its own, a new miracle – another chance at living was just around the corner!

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For the Birds

Flowers from Paul during hospital

During my hospital stay, the corridors were filled with reds and greens of Christmas decoration and cheer; the nurse’s station decked out with homemade ornaments and shiny tinsel. I took notice of all the decorations the day I was released because I was in no shape to wander the halls or leave my room before hand. This was a shame because one of my favorite spots to stand and linger at that hospital is the cheerful, well-kept aviary, filled with singing birds from around the world. These delicate creatures embody the meaning of living life. Despite their fragility and small statures, they choose to sing and their exquisite voices bring harmony to the otherwise chaotic, concrete world they are nestled in the midst of. In turn, I’ve witnessed people sit and watch the activities of these birds, engrossed and for a while transported to either another, happier time in their lives, or caught up in the wonder of life and God’s creation, on such a minute scale. He truly is a living artist, His palette over flowing with continual renewal of different life forms.

My nurses kept me well nourished. Well, as much nourishment as one can handle with keeping “it in” for less than 5 minutes! One dedicated nurse came in daily and worked through the knots in my hair; we marveled at how much hair came out from simple brushing. Up to that point I was opposed to brush my hair, it was falling out and I had bald spots; I didn’t want to lose more hair. A social worker popped into my room that first day and inquired of my home life since my BMI was 17.4. I guess not everyone realizes what a chronic illness can do to a person’s body weight.

Paul came to visit daily. He always wore a look of deep concern, yet was cheerful and encouraging. Each day he brought a fresh potted plant of orchids or other blooming, vibrant, full of life flowers, sending a clear message that outside of those hospital doors there were memories to be made. He brought his dinners’ to coincide around the time I ate, a welcome respite. He would relay his day, how his website launch was going, and make me laugh by finding humor in odd places. Just by being there a while each day he helped me realize what a dark place I was in mentally. Since I had spent months perfecting the art of shutting other’s out of my life, he showed that I was worth the effort, which I should’ve realized from how much my family poured into me, how they sacrificed, yet depression takes you to unknown depths.

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All Aboard for Abroad

 Those treasured days abroad were spent with fearless me, schlepping a pair of heavy suitcases, wandering a country where I knew no one, yet would come to meet my extended family. Travelling as a single woman was rarely daunting, I was street smart and played it safe. The trains were a splendid mode of travelling cross-country and I often rode the rails, talking with locals plus international visitors. No one was surprised at lone travelers; I learned how popular backpacking had become with nomads and seekers.

I recall standing in a lone turret one sunny afternoon, overlooking the North Sea, amazed at the immensity of this cold yet familiar ocean, as waves lapped over one another in timeless fashion. I wanted to capture this moment in time to share with my family back home. I marveled at the sandy beach in front of, and green grass around the turret; I wondered about past inhabitants, guards, tiny princes and princesses, make believe or real, who in centuries past peered out this same window. I imagined what they thought, what they wore, if they were at ease, or forever knotted in protection mode or treachery of a voluminous extent. I imagined this turret being a secret meeting place of various people for a multitude of reasons. I was so caught up in this mind play that I didn’t notice a friendly couple coming towards me with their two curious dogs – heads down sniffing, tails wagging, in sheer anticipation of new scents and a new person to sniff. The dogs were excited too. It was refreshing to return to reality, realizing that despite the past being history, we are still mortally connected to its lessons, its mysteries and that we cannot destroy.

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Then and Before

The breaking point for me came over Christmas; it was December 21 and our house was filled with the colors and fragrances of the season. My nieces and nephews soulful eyes gave away their anticipation and wonder of the season, sipping nana’s homemade hot chocolate with extra marshmallows offered by their papa. I wish I could add an abundance of good cheer to the mix as that would’ve been the perfect backdrop to the coziness of a Christmas tree, sparkling embers from the fireplace and the reason for the season. Apart from keeping it together for the kids, we were all worried and I was uncomfortably the center of that worry.

My parents and I had watched my fingers grow from normal sized to enormous red, bruised sausage looking appendages. I could not bend them, the skin was cracking, and my legs, heavy with edema had the same burgundy bruises dotting my shins; we knew what that meant. I called GI #4, who instructed that my parents, without delay, rush me to the ER. I actually listened.

We sat in the ER for four hours – my stellar parents having navigated downtown, big city rush hour traffic. I could barely sit, my hands hurt and I was to the point of desperation. Long story short, I was admitted to hospital and diagnosed with another bout of Erythema Nodosum, a painful skin disorder, related to Ulcerative Colitis and Crohn’s Disease, where red or burgundy, sore nodules appear on extremities, plus a super bad flare. My round the clock, care giving parents, ready to collapse from exhaustion, left me in the care of well trained, caring staff; the good Lord knows they needed a break.

Those few days before Christmas found me reminiscing and filling my misery of days with vintage Miracle on 34th Street and other Christmas favorites, along with lots of Key Lime yogurt (which only exacerbated my condition as I didn’t realize I was lactose sensitive). When I was not being entertained visually, I would look out the window of my room, at the gray staunchness of the surrounding buildings, thinking about how this time of year was either the best time ever, or the worst, for the people on the outside and the inside.

Before Crohn’s and Colitis, I was quite different; I had bought a one-way ticket to Europe and assured my parents they owned half my heart, but I had to find myself. They supported me and off we went towards the airport, not knowing when we would see each other again.

I recalled the person I was then, versus the person I had become, lying in that hospital bed, barely able to recognize myself, physically and mentally. I recalled, how years earlier, I was on another continent, preparing to spend Christmas with my dear friend Mark, his brother Garry, my newly adopted parents Steve and Margo, and their cat Charlie.

This warm, welcoming family treated me as their own, opening their home and hearts. We ate, we laughed, they introduced me to the wonders of deep fried Mars bars, deep fried pizza and prawn-flavored crisps. I met more of my new family, enjoyed hot tea and shortbread with Steve’s parents and came to realize how much I was enjoying living in the moment! We feasted on Christmas day dinner with our late friend, Madge, who had prepared a spread of delicious, festive fare, paired with the best red wine I’d ever tasted. For dessert, she graciously served her homemade Trifle, I’m pretty sure I had 3 helpings. Traditional food, superb friends, undeniable great memories, including playing with Madge’s German Shepherd’s.

With good humor my cohorts cajoled me about not having sure footing while traipsing around in European snow. Southern girls are not always well versed on how to navigate this white, slippery phenomenon, which rarely occurs in our part of the world. Armed with waterproof, thick-soled leather boots, I forged through mountains of snow (not really) and learned that car bumpers have more than one purpose. Never did I dream that years later, I would be feasting on those very memories to catapult me into keeping my head above water.

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Crohn’s and Colitis – What a Waste

 GI #4 was very plain in his interpretation of what I should do to ease the flare, a plan I was not ready to be a part of. Biologics. I fought him on this recommendation; the list of side effects deterred me and I was scared of developing medication related health issues down the road, having “induced this” or “induced that” stacked upon Crohn’s Disease and Colitis.

During one poignant office visit, GI#4 asked point blank what I wanted him to do. Never had anyone been so blunt, leaving my treatment in my hands. This spoke volumes as we had tried another medication, which did not work, was expensive and since I lost my insurance, I could not afford long term. This GI said he was worried about me; I must’ve looked perplexed because his next words stung. He looked me in the eyes and said something like, “Krista, you wobbled into my office, barely a shell of a person, you’re having to use a walking cane because you’ve hardly any strength left.” It was true; the act of walking through the parking lot, to the elevator, to the doctor’s office left me so fatigued; my legs felt like weights. I could easily pull up and down, without unbuttoning/unzipping my size 2 skinny jeans, a belt and thick wool leggings underneath were needed to keep them up.

For some reason, those words resonated with me, and I literally saw myself from his viewpoint. I was pitiful, wasting away and my denial had set in with vengeance. I realized how my champion parents had struggled with my dismissiveness about my condition. Talk about feeling like an eejit in hiding, I had to use a walker, a cane and could no longer climb the stairs to my room. Dad set up a cot on the main level for me; my nights were filled with night sweats, bad dreams of migrating, howling/yelping coyotes, and pain because I had nothing but aching bones to cushion and insulate. Once again, I was wearing my back brace.

As more proof of wasting, for the first time in my life, I developed receding gums and canker sores. Each time I ate pureed food (the only way I could tolerate) was horrid, like someone rubbing sandpaper between my gums; the best thing I found was to brush my teeth with a child’s toothbrush as the irritation from bristles was less. I could target the small brush away from the sores and clean my prized, orthodontist perfected teeth, of which my parents are still supremely proud. They paid a lot for my mouth. I found a super cool brush with Buzz Lightyear on the handle; he was more reliable than a fabled princess. It’s the small things.

I had recently willed my weakened self to fly, the super airport employees shuttled me to and from the gates in a wheelchair and shuttle – cane and back brace in tow. They employed the lift outside of the plane to board and unboard me because I was too weak to climb stairs. I looked like the walking dead I was so thin and gaunt, a painted picture of headstrong denial combined with a devastating illness. Denial morphed into depression and then grief. I questioned God. I questioned life. While I was not suicidal – I did ask Him to end my misery and let me die.

During this time, that still, small voice revealed that this was not the end, as much as I wanted it to be. He – The Lord – was not finished with my life on earth.

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