Month: December 2017

Independent-less

My 2015 nights were filled with little sleep, lots of grueling bathroom trips (usually 15 per night, more during day), night sweats and general chaos, all classic symptoms of severe Crohn’s and Colitis. I hurt, I bled, sitting and standing was a struggle as my bones cried out. What weight I had gained since my last flare was dropping fast and I tipped the scales at a whopping 98 lbs. when I reached a point of not caring; the quality of life I experienced was not worth it, therefore any ounce of fighting back left me. I could not bear the thought of “you’ll have this autoimmune disease the rest of your life.” My pseudo air traffic control mind looked backwards into my world of Colitis Crohn’s Disease; a vivid picture of agony, physical, mental and emotional, using a walking cane and walker to accomplish what lots take for granted. The gaunt, exhausted person I recognized was pushing a cold, grey metal walker forevermore into a spinning world, head over feet, head over feet, never quite landing anywhere.

My parents raised my brothers and I to be independent and self-sufficient; this blasted condition had rendered me unable to even support myself. To top it off, I’ve worked and paid taxes since I was 16 years old – since I am not an illegal alien, pregnant nor have kids, I qualified for zero assistance, not even food stamps. I had exhausted my life savings, checking account, sold my car and was mounting a large credit card debt to pay for doctor/specialist visits, medications, expensive, non-allergenic food, you know, things we all can do without. SSA judge ruled that I wasn’t “sick enough” to be awarded disability. Apparently IBS and peri-anal disease are walks in the breeze.

I thought of where I would be in life had these medical cousins not encumbered me, remembering how Crohn’s Disease and Colitis had wreaked havoc and essentially stolen my life, plans, dreams, motivation and zest for life. If you recall, I was diagnosed with Crohn’s Colitis a few months after graduating college. I had two coveted, formulated plans for once I graduated: return to the UK to live and work or earn my graduate degree from UNCW and work in ocean conservation PR and legislation. I strongly considered earning my B.S. in marine biology. A wise doctor, who oversaw this recognized UNCW department, guided me into PR, explaining that I would basically start college over again since my curriculum was arts oriented. I was already 35 and that did not interest me! On this continued academic quest, I laid plans for yet another move with pooch, found a place to live and had one potential employer request that I contact him once I graduated college! My late inventor uncle and I discussed his blueprint for producing biofuels; I began networking with DNR local to coastal NC parks –  Pooch and I were sitting on ready for the day I walked across the stage with degree number one.

All of that eroded over the years of disease progression and all I envisioned was history repeating itself over and over; after all, I was going to have this incurable disease “the rest of my life.” I was again – ready to meet my maker. When the enemy gives chase, he controls your mind and thoughts, if you give him the room. He had all the room he needed in my desolate mind and how he was working me.

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Pièce de Résistance

 How utterly interesting life can be, we all know that. My addition to this established fact has been occurring these recent months. Before I get into specifics, I must tell you the reason my posts have lacked in frequency – I’ve been sick from drug-induced lupus.

My brilliant GI, hereto known as Magnificent Seven diagnosed my increasing symptoms this week. Everything has seasons, shelf lives, measures of accurate effectiveness; eventually these things wear out, run their course or just become ineffective like thin toilet paper on a bad day.

My body has developed a resistance to the biologic I’ve taken the last two years, the one that pulled me out of my second debilitating flare, by suppressing MAP (mycobacterium avium subsp. paratuberculosis). Some of the symptoms of drug induced lupus have been déjà vu, the same symptoms to some extent as I experienced taking the first biologic.

The similar symptoms are: brain fog, short-term memory loss and being unable to express myself. I’ve noticed how much this has increased just this week. In relaying events or thoughts to others, I frequently become confused and cannot complete the thought; other times my words get so mixed up that what comes out of my mouth makes no sense. I recently told my brothers about making cornbread, I meant to tell them I added buttermilk and sour cream, what I said instead was that I added butter cream and sour milk! With a few raised eyebrows, my brothers understood what I meant. By the way, if you have MAP, don’t consume dairy. Leading by example is my best attribute.

In speaking with my dad tonight, I tried to make a joke; my words came jumbled, not humorous as above but rather in a way that neither of us understood. This is eerily similar to what I experienced nearing the end of the first biologic and lasted for months afterwards. That “uncommon” side effect caused me to be fired from a job I acquired a few months after stopping the first biologic – due to memory issues and confusion; the boss thought me incompetent.

This evening I was driving on a very familiar road and twice my heart jumped because I did not recognize where I was; I focused and thank God I made it to my destination. I am worried to put it mildly.

The joint pain has been incredible; wrists, ankles, knees, hips, elbows, spine all have hurt to such a degree that at times walking takes great effort and opening jars is impossible. I’m fatigued. My hair is falling out and I have bald spots on my scalp; my cousin Doug suggested that I may have a cool looking skull. If I go bald, my plan is to walk backwards in crowded places, pumping my arms frantically while wearing a pair of dark shades on backwards.

Skin rashes, light and noise sensitivity, plus a few other symptoms began Summer of 2016; knowing my history of developing antibodies to the first biologic, the GI I saw at that time dismissed the 2016 symptoms as biologic “related” and referred me to a dermatologist. I’m rolling my eyes at that memory because I did not know it was repeat lupus; I’m fairly certain she knew. Plus, dermatologists are the go to people for light and noise sensitivities.

On a bright note, I’ve been able to enjoy fellowship, hot tea and the best chicken soup ever created this week with dear friends. These are those rare friends whom you don’t see often, yet when you do it’s like you were never apart!

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