Month: November 2017

A Trunk of Life

 Recovery of this latest Crohn’s Disease Colitis flare (2015) took much longer than anticipated, and almost cost me my life. Again. The enemy chooses carefully whom he chases, however, my God at times, lets the enemy chase, but then He sometimes rescues us from the pursuit.

This flare, this latest trial, was one well rehearsed; since I knew what to expect and was familiar with what was happening to my fragile body, I set into a pattern of stubborn denial as this process caused me to waste away. Denial for me, as I now recognize, was a form of coping, and I thought that if I ignored or willed away the flare, that it would, in fact, listen to me and go away. Ha! A hard lesson learned, strong will is not always a match for a monster.

My days were filled with not being able to get out of bed other than bathroom visits or the occasional food forage. Bathing became almost impossible – I tired so easily and was required to take a nap after showering, I was that exhausted. Even then, the mere act of getting out of bed and placing one foot in front of the other was painful. I would walk by a mirror, the few times I chose to view the conclusive gaze of the person staring back was other worldly – I did not recognize my bent over, haggard form, nor did I want to. I had such a practiced ritual of dis-association, surely this mastery of self-deception would somehow convince the disease to go away.

My appetite was suppressed, partly because I knew it would do no good to eat and partly because I dreaded the after effects of eating. I knew if I ate, I was dooming myself to the soon to follow torture from being in a full blown, uncontrollable Crohn’s and Colitis flare. The thought of eating, of desiring one tiny morsel was lacking in immense magnitude; I simply did not feel like eating. The thought of self-loathing has since crossed my mind as why I let myself get so bad, however, I don’t think that was part of my equation. Why then, was the act of wasting away in front of my loved ones justified for me? The only reason I can conjure is the afore mentioned sea of denial, which knows no depths.

My bedroom was equipped with a glorious double paned window, which spread before me a large oak tree, bushes of pink azaleas and lush, green grass. This window represented life; I witnessed birds land on the branches, chirping happy songs, squirrels chasing one another round and round the dark, weathered trunks or burying acorns under their canopy. This window to the outside world allowed me to see that life does go on; people live, creatures live, the earth turns and seasons happen whether we are a part of them or not.

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She drove away

 Being a porter was fun; I crossed paths with all kinds of interesting people, my boss brought wit and 100% dry British humor to most days! My immediate co-workers, for the most part were eclectic mixes of sarcasm and caring jovial spirits. I learned routes, customer names and drove past the ocean daily! It was nice to work on a close-knit team. Before long, I considered them friends and would do things for comic relief such as taping toilet paper to the underside of my heel and nonchalantly walking through the service area.

One morning I woke with a tinge in my back, I thought nothing of it and went about my day. Over the next few days the tinge worsened and I recognized the all too familiar symptoms of a disc bulge in the usual spot. Realizing the ramifications of such an injury, I re-evaluated my routine of getting in and out of the cars at the dealership, making sure to move my torso simultaneous as I swung my legs in and out; too late for such ergonomics. Being the gifted in denial human I am, I began taking naproxen, as instructed by a GI nurse. I continued to work and not long after, went into full-blown Colitis Crohn’s Disease flare to top the joy laden disc bulge. Apparently, naproxen is on the do not call list for those with bowel insecurities. I remember being in the bathroom at work, hearing my name paged and not being able to do anything but remain, feet glued to the floor. This was no good because I was needed; it was my job to move the cars to the service area and shuttle patrons. My compassionate, uber understanding, willing to work with me boss assigned me to desk duty since my previous duties were not feasible; he did his best to help me maintain my job. I reached the point of not being able to eat at work and sitting was a joke since the fistulae decided to not be outdone by their higher status cousins of degenerative disc disease and colonic mayhem. Fistulae have such egos. Eventually, I began missing work, had to resign that position, and break yet another lease.

On top of that, after 10 short years, my Volvo (the Gem) reached the point of no return, with over 205,000 miles; I didn’t blame her for being on her last wheel. The Gem, Raven and I had traversed much of the South together, carrying passengers from all over the world, some in kilts, others in pimped out leisure suits & elf ears and on occasion, a genius! The three of us had entertained others and ourselves quite at our leisure; this old car with upgraded sound system (I miss those subwoofers) had proven her worth many times over. However, when you reach the point of choosing between fixing your car or buying groceries/medication, one outweighs the other. The Gem found a new owner, specializing in European cars and I watched her drive away, not breaking to look back, with her new mechanic doctor owner. Part of my psyche drove away that moment too. Pooch and I headed the opposite direction; away from the ocean life I had meticulously pieced together, including new boyfriend and slowly throttled back home to my parents, whose open arms could not come soon enough.

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Translucent Existence

 For a while I had few Crohn’s or Colitis symptoms, yet the memory issues still were present. Desiring to stay in this eclectic, beachside town, I searched incessantly for work and once again, God opened a job for me and with a Godsend of a boss. I became a porter for a car dealership! I also helped with simple paperwork; in the process I met a roommate and was able to bring my pooch to join this latest adventure! We lived 10 minutes from a dog friendly beach, almost daily pooch and I walked to a popular fishing spot near a marina, often spotting methodical, slow moving manatee, playful dolphins and lively fish jumping above the brackish water. Having rarely witnessed marine life, pooch gazed with wonder as she watched this dimension of maritime existence. Our quiet street was tree lined, with colorful, well-kept old houses and fresh ocean air – paradise hidden.

One day pooch and I were on our usual afternoon jaunt, down narrow, Spanish moss laden lanes after a storm and passed a smiling, white haired lady with eyes full of mischief, and rolled down socks visible below the hem of her button up, white dress. She stood at the corner of a fence and watched us pass, giving a wave and kindly smile, as if she lived in the old Victorian house behind her; for awhile I wondered if she was an angel or apparition for her frailty gave an essence of translucence; much later I learned that there was a nearby nursing home. I’m guessing she had broken free, past the staff in her great escape towards her own past dimensions; I wondered if she had a psyched, elderly entourage in tow that aborted their part of the mission once they reached the point of no return – the outside doors. Rebels.

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Trying, again

 Taking this stroll down memory lane has made me develop a new appreciation for those with chronic illness. To me, I was just living with Crohn’s Disease and Colitis and did not realize the challenges such onsets provide while in their midst; I always felt like I was looking from the outside in and in many ways I was. At times I viewed life from a by-stander position because it was easier to deal with, however that left me never being fully engaged in the present and I overlooked many opportunities.

The saying is true: everyone is different, what works forever for one may not work forever with another. Eventually, I began having persistent biologics side effects, the first were minimal – adult acne, red/swollen face, blotchy skin, nothing serious. Months after however, new side effects began – swelling of body, fatigue, short term memory problems/cognitive challenges, mottled looking skin, much like I was “wearing a burgundy crochet sweater” – this is how the infusion nurse described me. These problems combined with stories I heard firsthand about long-term treatment led me to stop treatment.

Deciding this time in my life was going to be different, I chose to follow my dream of wanting to live near the seashore. I felt my life was spared and searching for the next step, I headed towards salt water. Dad says he has salt water in his veins, I do too; there is something about life, which is vividly magnified when close to the ocean, as if stepping into the water is like stepping into eternity. Facing the ocean is like facing life, no matter what baggage we have behind us onshore, the ocean will always be a calm constant in a world of chaos, giving heightened perspective or brief respites.

God gave me the strength to relocate, plus provided a job and a gracious couple to live with until I was on my feet again. I became acutely aware of the cognitive impairments after I began working again.  The customer service/data entry job required lots of recall; normally, taking notes did the trick for me to learn a job and once learned, I had no problems. This time however there was a major problem, much to my chagrin and that of my trainer.

I took lots of notes and was ok for a day or two, following the sequence of my notes. However, on a Friday I would leave work, have two days without repetitive entry, and by Monday I was a complete blank as to how to perform my job. If I had not recognized my own handwriting, I would have thought someone else took the notes for I had no recall. I studied the notes over weekends, which did not help. As you can guess, I lost that job, and chose not to divulge that I thought my medication was the culprit, because that sounded like an excuse, plus, I abhor pity.

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Did you know?

After diagnosis and before biologics you could see my ribs, I was very boney; as mentioned in an earlier post, I could put on and take off my size 2 skinny jeans without unbuttoning or unzipping them. If you search for pictures of cattle, sheep or goats infected with Johne’s Disease or MAP (mycobacterium avium subsp. paratuberculosis, the human equivalent of Johne’s), then you get a picture of the potential for extreme emaciation; MAP can cause Ulcerative Colitis and Crohn’s Disease!

To familiarize yourself with Johne’s Disease, I recommend this comprehensive website dedicated to education, research, testing and building awareness, Johne’s Information Center; this devastating disease can be found among ruminants globally and the many facets this pathogen takes in its quest to survive may surprise you. If you have cattle or other animals that may roam in herds this website is even more golden, providing guidance on how to protect yourself and your livestock.

My heart hurts for the suffering but especially those with Crohn’s, Colitis and/or MAP and animals suffering from Johne’s. Both are needless and we must advocate stopping the slow carnage. There are various ways to do this including spreading the word for awareness and supporting researchers, microbiologists, veterinarians, physicians and everyone else seeking to eradicate this infectious organism.

Did you know MAP might contribute to MS, Type 1 Diabetes, Parkinson’s, Hashimoto’s and other diseases? For more information visit this site Human Para Foundation chock full of info, this unparallelled website should be celebrated because it provides answers and hope to anyone with MAP!

I developed the first two of seven fistulae after beginning biologics, which “wasn’t supposed to happen.” If I had known about MAP then, this could’ve lead to a different outcome. Did you know MAP creates fistulae in some cases? The pathogen tunnels paths through tissue, which originate from the colon to various places within the body, or breaks through the skin. From my experience, once established this mycobacteria has free rein to do what it wants and where.

As mentioned in my last post, I was finally able to work again! However (have you come to expect these however’s?), I developed another bulging disc, which put me out of work, on top of missing work for the fistulae procedure. As you can imagine I lost my new job because this fast growing company needed my support daily, not when Crohn’s and Colitis decided to give me “a day off!”

Johne’s Information Center

Human Para Foundation

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MAP was there

 Biologics were a Godsend, for quite awhile; however I wish that one of the many specialists I had seen had mentioned MAP (mycobacterium avium subs. paratuberculosis), that I might have it and that it may be responsible for causing my Colitis/Crohn’s Disease. Such was not to be the case and so I continue. I maintained a healthy weight and had a decent amount of energy – enough that I was blessed to begin working again. My Pooch and I packed our things and moved to a new city.

Easing into contentment with a somewhat challenging yet enjoyable job, easy relationship and fair town to live in, I decided biologics were the answer we prayed for, despite being concerned with the side effects I researched. For me, contentment has always been short lived, call it my nomadic tendencies or motto of “my bags are always packed;” this was a cause for pause at where I was in life. Pooch was happy, I was happy and my landlord was a trip. My relationship was smooth and I was not asked to choose between him and my pooch. It would’ve been futile anyway for pooch “always wins!”

I feel the need to reiterate how important it is to explore all of your options with your Crohn’s and or Colitis treatment. If I had known about the possibility that I suffered from a bacterial infection (MAP) vs. over active auto immune system, I would have explored that route and possibly saved myself 6 years of tumultuous ups and down, undue suffering (my family and myself) and feeling like a guinea pig. MAP was there, mapping out my body for future launches, yet I didn’t know it. The biologics worked in my case because they suppressed MAP; biologics cannot destroy this invading organism, but sometimes will send it packing to the deep recesses of the bowel, lymph nodes, adipose to lounge with its chill playlist and wait for the next opportunity to come out of hiding. Be your own advocate. If your GI won’t explore options with you, find one who will. Don’t you owe that to yourself?

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Biologics, Trails and a Cue Stick

  The Year 2013 and a good while into biologics, I felt close to normal. I gained weight, was able to hold my food much longer, the pain and most other symptoms had subsided and Buzz Lightyear found a new galaxy to conquer. I fondly recall how weird it felt to have food remain in my system long enough to be absorbed – this was a remarkable feat! For the first time in such a long time, I felt full and welcomed the pressure of an extending stomach. That barren, bottomless pit of gut emptiness had been covered with fertile ground where life could once again establish. My vagus nerve had substance to send to my brain, and a good portion of brain fog burned away like the thick, cool mists of Scottish mornings around Steve & Margo’s flat. I graduated from being able to feel every single morsel of food travel down my once inflamed esophagus to swallowing, and not feeling my food painstakingly travel downward.

To top this repose, I was not afraid to have a social life and began dating a wonderful, supportive, empathetic man who taught me to play pool! He also demonstrated that there are a random few capable and strong enough to handle the ups and downs of a relationship with someone who has chronic illness. I chose not to let the illness define me and he did the same! It was refreshing to actually dine out, my only worry being the menu; it was even more refreshing to be able to look at the open road with enthusiasm and not fear. Mom and I joined a gym and I began to slowly build my strength. My body responded well to weights, leg lifts, spinning, I was regaining precious muscle mass. One way Dad encouraged this rebuilding was with meat; no one can grill meat like him. He makes pork taste like steak and he makes chicken want to fall off the bone. The Grill Master has his secret marinade to make steaks dance the flamingo upon your plate, and your taste buds signal to your GI tract of the party on its way down.

When I could drive again, I remember finding and exploring a trail with my pooch. The first few times we hiked, we walked – later she and I hit that trail running like two caged birds set free, weaving between tall pines, immense virgin hardwoods, jumping over gnarled roots partially covered in bright, green moss and splashing in the clear, cool streams! Like two smothered beings, we breathed in as much of the air as we could, lungs expanding with welcome to the woodsy, earthy, crisp, fresh air of a forest. She was responding to me responding to this innate need to be in nature and thrive. God spoils us with nature. It had been a long time since she and I had hiked; that used to be our thing, either day tripping to hike/picnic or road tripping to the beach, and dog friendly hotels via bringfido.com.  To witness the enthusiasm and sparkle once again present in her demeanor and eyes meant so much. We were on squeaky toy overdrive minus the squeaks and toys. We were a long way past her spooning me to keep me warm, and lift my spirits. Or so I thought.

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