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!

2 comments

Judy Wanamaker

Oh, Krista, I was so hoping you were feeling better. You will stay in my prayers, as you have been since I learned of your battle with these illnesses. Your positive way of dealing with it is amazing. Sending love and hugs, and lots of prayers.

Thank you, Judy! I suppose if life were smooth sailing all of the time, we would become complacent or bored. That’s a guess. In the meantime, we have all of these adventures between mountains, no one said adventures would be welcome 😉

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