Month: January 2018

The Fundamentals of Caring

Dr. and Mrs. Ira Shafran

Over the course of our lives, we cross paths with various people from all walks of life. To quote Mother Teresa, “Some people come into your life as blessings, some come into your life as lessons.” As powerful a statement as that is, it lends me to believe that those two embodiments can rarely be condensed in the same person; Mother Teresa may or may not have meant those terms to be separate, yet in her divine wisdom she may have left her statement as is, to make the seeker think for themselves.

When you meet a unique, with the confident ability to deliver both blessings and lessons, basically the human experience, it makes you step back to observe. You consider that you may have met similar people in your journey, yet were not ready mentally to delight in their remarkable gifts and knowledge. I readily think of my parents in these regards.

I recently had the pleasure of spending time with one such person, Dr. Ira Shafran; during those moments of contemplating which cigar to try, I gleaned a new appreciation towards my own life purpose. Under the influence of this idiosyncratic fellow, I formed an updated mindset, one I wish I had adopted years ago, yet chose not to: living in the moment.

Too oft, our hours are jam packed from dawn to dusk, always planning and re-routing in order to create what we deem the best life possible. Internally, most struggle with the brevity of life, which in turn ignites us towards pursuit, forever striving for accomplishment; each of us harbors our own definition of accomplishment. In these moments of harried living, life becomes un-malleable as we say no to the precious mindset of enjoying the now and yes to what we think is securing our future. I know, I’ve lived this way for years and thinking back, regretfully.

I recall moments that I wish would last forever and sadly recognize, how when I was in the moment physically, mentally I was already 12-24 hours ahead, thinking about this or planning that. God grants us great expectations yet He also grants us time to heal, mellow, cultivate and step off the cataclysmic trains we create in our quests to succeed.

Success is measured individually and if we choose to learn from others, we are ahead of the game. In my observation of my eccentric friend it was obvious how he embraces life; on a given day you will find him amidst crowds walking his beloved pooch, enthralled with those he meets. Ira keeps in touch with old friends while simultaneously making new ones; basically he never meets a stranger. He checks in with people and makes introductions; it’s as if he realizes his gestures may be the only heartfelt one they receive all day. A lesson in his fundamentals of caring.

In my own guardedness and skepticism, I shudder to realize how many times I’ve been offered the hand of friendship or better yet, saw a path towards getting to know someone yet chose to ignore those prompts. I realize how others have pursued a friendship with me, yet I was too wrapped up in my own voyage that I ignored their beckons, eventually they gave up; I don’t blame them.

Upon having a cigar in the company of my infectiously vibrant friend, I met new acquaintances, shared laughs and swapped stories with strangers; all unchartered waters for me, all from his leading by example.

I observed how each soul contains individual abilities and how crucial it is to be ourselves, while pushing our own boundaries past set markers, to expand; if we continually live within our comfortable bubbles, we’ll miss out on living life. You can challenge your limits or live contentedly as is, that’s your choice in life.

I considered the friendships Ira has, some old, others more recent; the lesson there was that you never stop neither living nor cultivating relationships. I saw someone with the capability to engage strangers, reminding me of my own exceptional dad.

I witnessed a classic go – getter – not afraid to turn heads, ask questions and certainly not take things as they seem; with a history of blazing his own trails and pushing past the status quo, his genuine actions completely fit his personality. My friend’s bride Anita is no exception; innate and generous, beauty meets beauty both internally and externally with her – a natural, much like my own lovely mom.

For me, to add an expansion into my sparse canopy of true friends is monumental – like forging an alliance with a trusted commandeer; that is one of Ira’s blessings to me. His zest for life makes each waking hour count and proves that, despite adversity, the pursuit of happiness is still worthwhile.

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Is Your Water Safe?

To limit exposure to MAP (mycobacterium avium subsp. paratuberculosis) and mycobacteria in general, I’ve researched ways to guard my home against these pathogens, via water. Unfortunately, most public water utility systems offer little protection from mycobacteria because of its ability to produce biofilm, which attaches to water pipes, both incoming and outgoing. “In fact, M. avium numbers increase in drinking water distribution systems as the distance from the treatment plant increases” (Joseph O. Falkinham III, Reducing Human Exposure to Mycobacterium avium, atsjournals.org). This risk increases since runoff from livestock and dairy farms, which likely contain mycobacteria and MAP end up in rivers, a source for public water supplies. Low heat temperatures and diluted chlorine are simply ineffective in destroying mycobacteria.

According to Dr. Falkinham, mycobacteria are common in the following: ice and water from refrigerators, basic water filtration systems, humidifiers including those in HVAC systems, spas, hot tubs and the like. He recommends disabling humidifiers in HVAC systems or not leaving water in reservoir, plus cleansing and disinfecting reservoir every 2 weeks, (the amount of time M. avium recolonizes).

Hot water heaters pose a looming threat and maintaining water temperatures of 130°F (55°C) or above reduces the growth of mycobacteria; buildings with water redistribution systems have higher counts of M. avium. To limit exposure consider the following:

-Routinely drain and refill hot water heaters every 2 weeks
-Open bathroom windows and use efficient ventilation fans
-Regularly disinfect your showerhead for 30 minutes in undiluted household bleach
-Exclusively use showerheads which produce water streams greater than 1 mm in diameter, or use shower heads with microbiological filters with less than 0.45 pore size

I was surprised to learn that most GAC (granular activated carbon) and AC (activated carbon) water filters offer no protection and may promote the growth of mycobacteria. Carbon is used in water filtration systems to eliminate odors and bad taste from chlorine, metals and minerals present in the water; this works through a process known as “adsorption.” Adsorption is where organics in the water being filtered, adhere to the carbon’s molecular bond.

Carbon filters have too large a pore size to trap biological impurities, including mycobacteria. The water is filtered at too fast a rate to catch the contaminants and the actual components (carbon) are not capable of keeping mycobacteria at bay (recolonizing every 2-3 weeks).

Since I’ve used carbon filters for years, I wanted to know the difference between a water filter and a water purifier; one main difference is the size of the contaminant each system allows through. Water purifiers mostly catch viruses; water filters have too large a pore size to catch viruses, both are ineffective in catching mycobacteria.

Dr. Falkinham recommends boiling water for 10 minutes to destroy mycobacteria, a practice I regularly follow for my drinking water!

Reducing Human Exposure to M. avium

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Life, from Inside a Fish Tank

My friend Roxanne has a fish thumb, she can collect any fish, nurture it and reap the benefits of thriving species, which fill her bright, colorful tanks. I admire the dedication she takes in caring for her charge and for ensuring their tanks are filled with lifelike water shrubs in every imaginable color. She has aged driftwood, green hued rocks flecked with mica – reminiscent of the Emerald Isle and other quizzical shapes for her fish to hideout, play or raise their young.

There is symmetry involved when comparing life with chronic illness to Roxanne’s lively fish tanks. Chronic illness has the ability to make us feel we are being viewed as captive specimen, from which well wishers, physicians and curious observers place us, simply because they don’t know what to do with us.

We override contentment of having a small, familiar circle with the inevitable what-if, could’ve been, and was, which equates a narrowing perception of our abilities and ourselves. If we are not careful, our tanks decrease in size over time, almost imperceptibly and we are suddenly swimming alone.

Those in the confines of disease are as varied, unique and beautiful as the fish in Roxanne’s tanks. Some of us are striped horizontally or vertically; others of us take on muted solid colors. Depending on how we deal, we can live as vivid seekers swiftly swimming the currents we are dealt, displaying a new found sense of importance and cloaking ourselves in rainbows of orange, yellow, pink, red, turquoise or violet.

When we learn to own our illness, we begin to fan our fins just a tiny bit to test the waters of a changed life. For some, those fins morph into powerful propellers, much like the propellers on my Uncle Harold’s twin engine Bonanza, which I’ve auto piloted before under his skilled guidance! I clenched (thanks, Stephen) a few times though when turbulence caused our time machine to suddenly veer sideways or up. Atmosphere has no respect.

For others, there is safety within the confines of our own little tank. We realize most people will never understand our struggles nor grasp exactly why we cannot accomplish the same things as they, even though we look fine on the outside.

Fanning your fins just a little is better than nothing at all. I’m not writing to suggest you react one way or the other – that is up to you. What I am suggesting is that you grant yourself permission to dream, if only a tiny amount; fantasy may be a form of coping, a brief respite in the continual onslaught of feeling bad.

May we appreciate that God has granted us passage into a new calendar year. I hope you realize how special you are to have reached the year 2018; some do not make it this far.

There is life both inside and outside of Roxanne’s fish tanks, it may not be as ethereal on the outside as we would like but it is there for the taking. Welcome to 2018 and welcome to your own unchartered waters.

Posted by kristaevans in Posts, 2 comments

Southern Blur

During the 2015-2016 debilitating Crohn’s and Colitis flare, my life became blurred; I lost sight of family, friends, even Pooch. I was not interested in the fight against what I was told were lifelong autoimmune diseases; I did not take into consideration those my outlook would impact. Those very people who were by my side the previous years, plus my brown-eyed girl.

In the South, we have many “-ism’s,” aka Southernisms – if you are unfamiliar with this one, behold. My then boyfriend “gave me a good talking too,” without apology; amazingly, it worked. This man, who had seen me at my somewhat best and now, at my worst, gave it to me straight. He told me that I was not the only person I was affecting, that he was in the picture, my family, his family, my nephews and nieces were all touched by the incessant Crohn’s and Colitis symptoms of my illness. How sad it would be to not see them grow, to never again celebrate birthdays, holidays or take pooch to the beach. He explained what a hole I would leave in the lives of those who loved me, and how I needed to get myself up and deal. Guess what I did? I dealt.

My go-getter Mom scheduled an appointment with recommended GI#5. My parents drove me to this appointment and we were on edge, as if riding the wheeled platform of a dust billowing chariot on an open field of armored troops, not necessarily as a form of transport, but rather like we were facing impending warfare, not sure what to expect compared to the plethora of past GI experiences. Dad, the fierce, Corinthian helmeted warrior driver, mom the hawk eyed, bow and arrow yielding archer, daring anyone who would thwart our galloping, Spartan pursuit; I was in charge of, well, not shitting myself.

GI #5 did a thorough examination, from looking at my fingernails to asking details about my arthritis, stating that most people with Colitis/Crohn’s Disease have arthritis. News to me. By then, I had 2 established fistulae and would develop two more under his lack of care. Did I just type that?

He recommended a new biologic; having been kicked off of my pre-existing insurance by Obamacare, that was out of the question as I was still paying for my previous biologic infusions. GI#5 prescribed 6mp (chemo in a pill), iron supplements and this new, out of the question biologic, along with prednisone. He warned that if my anemia did not improve, he would put me in hospital for transfusions. At first mom and I thought GI#5 was golden; he and his staff were attentive, saw me regularly and staff returned my calls. He recommended a new colo-rectal surgeon to see about the latest obnoxious fistulae. Being content with and trusting the one I already was under the care of, I refused to see his recommendation and things went south with GI #5, pun intended.

I saw my brilliant colo-rectal surgeon who had dealt with my glowing fistulae history; he told me that I had to treat my Colitis/Crohn’s diseases like cancer, and said he might consider a colostomy bag to let the intestines heal because my colon was in such rough shape. Mom asked how long that would be in place, he answered that he did not know. Wake up call.

At that time, I had been on 6mp for 2 months and was asked how my labs were by the surgeon. Immediately I felt microscopic, like someone standing aimlessly, mouth agape, with no particular destination, yet wearing a look of remarkable ignorance. I know I looked dumb, asking “what labs?” Shaking his head in disbelief, surgeon explained how 6mp required monthly routine blood work – not once did GI #5 order labs or suggest I needed them. Surgeon examined my abdomen for signs of distention and pain, tell tale signs of life threatening 6mp side effects – thank the Good Lord I was ok. Long story short, I fired GI#5 and we tuned our chariot to a different compass.

As a side note worth mentioning, one of my new and fabulous “Crohnie” friends mentioned how she was told to make arrangements for and prepare her kids and husband for the worst during the latter portion of her 25 year battle with Crohn’s Disease. She had not responded long term to mainstream medical treatments and was told no one could do anything else for her. I mean, what do you even do with that? That is what Crohn’s and Colitis can do to our bodies and my heart goes out to her and other’s parents/spouses who must consider the unthinkable. Thank God, she is in remission from her anti-MAP therapy!!

Posted by kristaevans in Posts, 2 comments