Month: March 2018

Grief

As I forage the mirage of memories during my 2015 flare, it becomes hard to decide where to continue. I fear my audience grows weary reading about the day-to-day struggles I faced, navigating through physical and emotional pain, mental turmoil and ever-hovering lack of energy. Let us power through!

Realizing my friends were out and about working, meeting for dinner, planning weddings or baby showers left me feeling in a quandary of wondering as my mind wandered. Why had my independent, driven to succeed life style been reduced to zero? How had my nest egg turned to dust and why was I forced to close my bank account due to lack of income? Why was I unable to get support from the country that I’ve paid taxes into since a teen?

Unbeknownst to me I was grieving, not only for the life I lived, but for my life unlived. That year I missed the wedding of my two dear friends, Fred and Alisa, before that I missed the wedding of my fun loving cousin, Kimberly, plus numerous special events and outings.

All of the accomplishments I made heretofore meant little as I struggled to enjoy a simple pleasurable moment, such as watching cream settle into cloud like swirls in hot tea, sitting in the sunshine or watching a colorful butterfly flit around joyously within it’s delicate circle of life. Eventually, you reach a point where you recognize the value of small moments and choose to relish in those, reconciling the past for what it is, the unreachable past.

My inspiring friend, Ray, helped me realize the roots of my angst – grief. After nursing his bride for ten years, Ray had just admitted his lovely wife to a care facility and was dealing with legitimate, well founded grief. She had reached the point of needing round the clock care; probably most painful was the fact that she no longer recognized her loving and devoted Ray. Gone were their golden years, of not enjoying what they each had worked so hard to share together for over 62 years. I cannot imagine what that is like nor how Ray deals, yet he does so with cheerfulness and dignity. Ray is a saint in his endeavors to care for his wife and help others in their struggles, although he would say otherwise.

Each of us grieves, sometimes for different reasons; had Ray not chosen to share his experience with me, I may have never recognized or validated the stage of life I was in. There is great chance that I would’ve never recognized my own grieving process nor given myself permission to name it for what it was, precluding another clogged channel to work through later in life. Thank you, Ray, not only for your continual words of affirmation and gentle encouragement, but for your friendship. You do make a difference as you teach that we shine brighter through support and you do so with cheerfulness and dignity.

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Clearly

Seeing the blank person I became made me throw myself into damage control. This medication had taken all threads of life enjoyment from me. The mood swings – I could go from zero to sixty in seconds, at those times I did not know what to do with myself. To me, then, the cause was the situation, yet how I reacted to those situations is key to understanding just how changed I was. My non-drama attitude was replaced with defensiveness. I asked, and the guy I then dated described how intolerant and non-feeling I had become towards life and all the people and things I used to enjoy.

This awakening was bittersweet as I realized how damaged my relationships were. My close friends and family walked on eggshells around me; the chemo mutation made me do a 180 as it replaced halcyon with chagrin.

Despite this fresh knowing, the whirlwind of newfound cheerfulness abated once I resumed the 6mp. While happiness again transformed into a figment of my imagination, I did experience cool evenings and occasional farts of tranquility. Under approval from GI#6, I halved my dose in hopes it would keep me at a more constant and medial level, which it did, but I still had mood swings and the world wasn’t as colorful anymore.

Immediately, I poured out my heart and all which had transpired over those 3 days into an email to GI#6, she had met the guy I dated, therefore had a reference to all I exposed. Her response? A heartfelt, two worded “oh, wow,” all in lower caps; I felt overwhelmingly acknowledged and completely swaddled in advocacy from this once trusted source; I slept better that night knowing she had my back.

I continued to take the 6mp because GI#6 vehemently advised I needed it for fistulae healing and Crohn’s, Ulcerative Colitis symptoms control. Again, I fully realized the importance of being your own advocate, listening to your own body and loving yourself enough to just say no. I fired GI#6 and discontinued the drug after developing the last 2 fistulae, within 2 months of each other, despite having taken 6mp for almost 2 years, overlapped with biologics for over 2 years. You know what? I could see clearly now the rain was gone.

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Awakening Part 2

Day 3 of that momentous 2016 respite from chemo was even better; I woke with a positive feeling and actually wanted to get up, both out of character for who I was! I felt happiness deep within, I experienced joy, I laughed at something silly and relished the faint redolence of life slowly ebbing into my stiff senses.

I asked for hugs and actually felt them, allowing myself to be absorbed into someone else’s personal space. I was feeling joyous emotions, something besides peering through a starched gray veil, completely unable to enjoy life. I was awakening. Krista was returning.

I tried my best to express myself and relate to this new found kaleidoscope of sights, sounds, smells, tastes, daily life and discovered that my daily life could be a good thing after all. I smiled, I danced, I sang, I hugged my people, I hugged pooch. This epiphany of ethereal surrealism reminded me of a faint memory of who I once was.

The person I remembered was, in some ways, eternally different. The person I recalled was the one who bought a one way, transcontinental ticket, on a mission to find myself and forge a mental alliance with my ancestral homelands. That person was me, before arthritis, before Crohn’s Disease, before Colitis, before MAP (mycobacterium avium subsp. paratuberculosis) exposure.

Is some strange way, I viewed the person I was as a character out of a novel, wholly created in my imagination. She seemed so foreign, so far away; the person I was before diagnosis did not faintly resemble the changed, sick person I became. I wonder if we are at our strongest just before we become our weakest, possibly as a point of reference to our God given strength and perseverance. To think that I could ever return to being that person was unfathomable, yet those memories served as a reminder of things I accomplished, people I met, experiences I had, which I never would have dreamed.

I crossed paths with seemingly unreachable people, shared memories with others who have since passed and now enjoy lifelong friendships with loved ones I met on my sabbatical. We are quick to determine that the life we presently live is our eternity, however nothing could be farther from the truth. We just don’t exist only to pass into nothingness; we have a purpose, we have God given talents and while finding those sometimes seems like an eternity, if we make the effort, it pays off by way of fulfillment.

Realizing how depressed and checked out I had been to my loved ones and myself, I cried. A deep soulful, realization of tears, as all the amassed, captured gray of time and the emotionless, colorless shell I had become, washed away, down the vast drain of history; all of this chaos and complete lack of enjoyment for anything, from one small, needless drug. While I will never be able to gain back the time and moments lost, I can look forward to the times ahead.

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Awakening Part 1

Did I mention that this 3-day siesta from 6mp was life changing, a borderline panacea? This one overlooked “mistake” was my awakening! The first day without taking the drug I felt different and strange, yet in a good way. I couldn’t identify what was happening but I liked it, it was abundant and cleansing if you will.

Day #2, I ventured outside and noticed color – glorious blue skies, the opulent shade of green grass and late Summer leaves, brown/grey hues of knobby tree trunks laden with wispy Spanish moss, the bright green and hot pink of my pink polka dot plant.

Amazed with my once hidden, then renewed colorful sight, I went inside and for the first time in too long, I noticed the colors of my inside world: bright shades of wall colors, and the soft, muted flowers of window treatments from my late Auntie Evelyn. There were under appreciated works of art, from whimsical paintings to nautical wooden and sea glass objects, my favorite Fall scarf of yellow, orange, pink, all in staggering ombre. I didn’t know how to react, where to begin or what to do. So, I cried.

I remember going from room to room, seeing the contents for perhaps the first time, appreciating the beauty of life within, from simple family pictures on my dresser to the calypso colors of a wall painting. I called a friend, trying to explain what was happening. I was seeing colors for the first time in a long time and I was appreciating the effort behind the displays.

I realized what an island I had become, inhabitable to only me, sustainable to few else; I felt nothing inside therefore had nothing to give. When life lines were tossed, I usually cut the line and kept the float. Most overtures of kindness were lost on me, not out of spite, but out of having no feeling, few emotions except numbness and not knowing how to react. Only my true friends and family toughed it out; they knew who I was before chemo and that is what they held onto when I gave them nothing else.

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SMH Continuum

As mentioned, the straw with GI#6 had been weakening, let me further explain; up until recently I was taking 6mp (chemo in a pill) daily, trusting GI#6 protocol to help “manage” my Crohn’s Disease and Colitis. I ignored my body alarms to the 6mp, which included: new and extreme sensitivities to loud noises, bright lights, large crowds and being easily overwhelmed.

Those significant changes perplexed me, yet I validated their existence with the need to endure the side effects of a medication which was prescribed to “help” me. The sad thing is, I didn’t realize how dangerous the situation was until 2016, when my life began to change, yet again!

I went 3 days without taking 6mp, I simply forgot to order them (memory issues remained still). I remember going to celebrate the birthday of the guy I dated, with his family; I was physically present, that’s it. He had a large family and I was overwhelmed by all the activity and noise most families make when celebrating. Before 6mp, I would’ve been in the middle of everything, with video camera. However, this time was different.

The family dog had taken residence on my lap and I was on the couch. The family moved to the birthday cake laden kitchen table to sing Happy Birthday, accompanied by bazookas and boisterous kid cheer. The noise left me immobile; all I could do was sit and watch from across the room, with the dog on my lap, which was oddly comforting. As the family sang, I didn’t know whether to run, hold my hands over my ears or ask them to be quiet, which you don’t do at a birthday party. I remember the celebrant’s mom looking over to me while they were singing, all I could do was return her wondering yet conclusive gaze; I can only imagine what she was thinking.

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SMH!

What?

There occurs a point of dissatisfaction, when those not meant to be in our lives for long exhaust their purpose for us. GI#6 reached this point with me in 2017; the infamous tan and weathered straw was severed soon after my colonoscopy. As mentioned, I was the lucky bearer of 6 fistulae, each with Seton placements, the last two presenting them glorious selves last year.

GI#6 had completed the latest, joyful quest into my rectum; in recovery, she tried to offer encouragement regarding my fistulae assemblage, with a passing phrase akin to, “you’re seton’s are fine, people live with seton’s for years and do well.” In other words, I was just sentenced to having these hindrances for the rest of my life; apparently that’s the norm when one is disinterested in exploring options with their patients.

In my anesthetized state I managed to think, “you’ve no idea”. You’ve no idea what it takes to manage these things, and you expect me to just be okay with having them? Come on! I can’t swim in pools, oceans or otherwise be in any public water source. I can’t ride a bike or sit for long periods of time due to pain (in the buttocks), plus a few unsavory characteristics of fisulae, not to mention round the clock maintenance. When they are aggravated, there I am popping pain pills, lying on cold packs, feeling like I’m sideways on top of two camel humps.

I can only explain so much to my nieces and nephews of why I can’t do certain things. When invited to go out, my usual response was “no thanks.” No way will I accept this sentence; however, I did accept a similar sentence six years ago, when told I would have Crohn’s Disease and Colitis the rest of my life. I could insert a spoiler alert here, but you will need to stay tuned for that!

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