Month: April 2018

My Journey Continues

Penning anything about myself is an unusual endeavor as I am extremely private; revealing myself to the world is something I feel God is leading me to do, in hopes to not only help others, but magnify Himself. Without Him, we are nothing. Without Him, I would not be writing.

Being candid about my struggles has to be viewed from the outside looking in; instead of seeing my experiences through a personal magnascope, I must swivel and realize that this is like a detergent for others facing similar difficulties. The abhorrence of appearing like a victim, or having a woe is me mentality if I share too much, is replaced with the cleansing realization that I can identify with many others; my struggle may or may not match yours, however we are all sondering in one direction or another.

As I forge onward with these musings intertwined with my story, I feel it only best to give you a preview into what my life is like at this very moment. The most imposing issues now are fatigue and insomnia – that’s it! I am maintaining weight, cognitive functioning is replacing brain fog and short-term memory loss; cramps are a bit less, my olfactory system has the cogs turning once again and the drug induced lupus symptoms are beginning to leave, ever so slowly. Precious pooch has a precious new bestie named Kiwi and the therapy these two dogs present is a comforting balm. Progress is being made!

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Updated Version

Ulcerative Colitis/Crohn’s Disease are two of many silent diseases. Unless one is in mid flare, there can be little visible signs of illness. Subtleties such as exhaustion can be over ruled briefly with caffeine, drudging to shop can be temporarily masked by pain killers, and the brave face that a lot of us wear, who keep our problems to ourselves, works wonders for charades to the outside world. The mask makes it difficult for others to understand what we face daily, as we “look fine.” However, the looking glass bears great distortion, both from the outside looking in, more importantly, from the inside looking out.

Understanding then accepting the levels of defiance, denial and grief is an acquired resolve to beginning to love ones self again; small steps to make our lives a bit more bearable are needed for self-affirmation. Our bodies respond to positive queues just as they do to negative self-loathing. We are living creatures – resilient, yet needy to the love, attention and care that we so often delve to everyone but ourselves. When we introspect, we locate deficits within our psyche, those dried out channels and pathways, which lead in and out of ourselves, which must be nourished daily. If we continue drying ourselves internally, it does not take long for us to display those embittered responses to those around us and unless we are careful, we shut ourselves away from the very people who care the most for us.

Speaking for myself, I began ignoring phone calls, texts, emails and most attempts from those who knew a bit of my struggles. Unless these concerned friends or family are determined and can see past our façade and ignorance of ignoring, they will drop off the map. Who can blame them? You must be a trooper to endure chronic illness; you must be a trooper to be patient and love someone with chronic illness.

The older I am blessed to become, the more I realize how everyone has a struggle, some greater than others, but nonetheless we all deal with Goliaths. How we choose to respond to circumstances determines how well we live life; even the most optimistic people have deep chasms of chaos. The optimists are to be admired because they choose to remain soft and vulnerable, rather than fully retreating into themselves, morphing into an emotionless grey wall, the only penetration being, not love, but dynamite. I know, my gray fortress was thick and surrounded by two moats, filled with prehistoric swimming creatures ready to strike prey. Well, perhaps not to that extent, but close enough. Only those few, who persisted with trial and error, patience and love, tamed those beasts and carved their way through my walls.

I’ll never understand all of my circumstances and I don’t think God intends for His children to always know the reasons why He sends us through storms, yet my faith in Him gives me reason to hope, for He has never failed me. The best way to explain where I currently am in life is that I’m striving to become a better version of my pre-illness days and by the Grace of God, an updated version of my old self!

This is my birthday cake my dear friend Pam baked and decorated for me, gluten free and delicious!

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Sunset Bleu

Before I continue, I might interject that these last 2 weeks my physical difficulties have intensified. Joint pain inhibits walking/sleeping, muscle aches, overall stiffness and flees to the loo have me weaving a deepening trail of pain meds and heating pads; it’s early August 2017, hardly the time to be cold and hurting. Such is a day in the life of a Colitis/Crohn’s Disease patient. However, this time is inextricably more tolerable, more load bearing as I am having, err, welcoming the throes of Herx reaction, in other words I’m living through die off of MAP (mycobacterium avium subsp. paratuberculosis).

My teeth and tongue are a matching shade of endearing navy blue and daily I taste metallic. My hair is thinning and I have visions that I may soon resemble a blueberry lollipop. My complexion is orange and my hair goes between flattering hues of orange and greenish blue. If you squint, I look like the sea at sunset, especially if I smile; perhaps these reactions are a nod to herald incoming and continuous seasons of Belle Époque as opposed to past seasons of seemingly dismal and infinite gray expressionism? That’s my take on these reactions.

These reactions are side effects of the antibiotic regimen my new GI – #7 has prescribed. This I can handle, because I’ve had 6 years of the flip side with no end in sight; the end is in sight now since I believe MAP is the cause of my Colitis and Crohn’s. Trials, studies and scientific data all back this claim and I do not mention this lightly. My new GI rocks the rafters and so does my new treatment, which is not a band-aid as previously experienced for 6 years, but rather a possible cure!

As presented in earlier posts, MAP transmission, (infected ruminants, dairy, and tainted water are the top sources), does not affect everyone, only those with a genetic predisposition towards illness or those with microbiome imbalances. There is more to come on that subject! Check out my two articles:

Is Your Water Safe?
Two Uncommon Sources of Mycobacteria You Should Know About

The Lord laid this quote on my heart: For everyday you wake healthy, for every day you wake feeling normal, consider yourself blessed.

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