In Which I Find Other Friends with Facial Rashes and Diarrhea

Knowledge is power. But honestly, at some point, it just drives you batsh*t crazy.

I have spent the last week researching lupus and having some conversations with those who have been diagnosed and are on similar medication.  The general research is full of possibilities and dangers and such. So far everyone that I have talked to has a mild form of one of several auto-immune disorders. We have agreed that the medication considers our bowels its playground and that it doesn’t play very nice, like those elementary school bullies who were willing to do anything to win at “King of the Mountain.”   We all get tired and all are working on lowering the level of stress and anxiety in our lives, which among us is universally high. Most of us are on medication for it and nearly all of us on several of them. We carry around SPF 50+ products in small convenient tubes to smear on our noses and cheeks and foreheads and other exposed skin in order to prevent reactions from the sun, both due to our disease and from the medication used to treat it. We compare facial rashes, which is about as much fun as it sounds.  We wear long sleeves and long pants in the summer. In Florida. And we wear hats that most of you would not be caught dead in even on Halloween, floppy monstrosities with embedded sun protection and ventilation of a kind. If there is a breeze.

Lupus manifests itself differently in different people depending upon where the disease decides to flare up at a given time and over one’s life time it can do this is in many different places causing a variety of symptoms. Symptoms like joint pain and fatigue, my current serving. Only six more weeks until my next blood test according to the paper calendar I refuse to give up despite a very smart phone begging for me to go all digital. Give more blood, then the waiting to see if it is getting more intense or lessening. For now. And then an eye test to make sure the meds aren’t screwing with my macular. Which it shouldn’t. But, just in case, as a conservative precaution, says my eye doctor and rheumatologist.  No one under 50 should have to learn the word “macular” who isn’t getting paid to know it.

I have taken more naps in the past two weeks than I have in the past twenty years due to the fatigue, the new medicines, and me trying to figure out a daily work routine that works. A month ago I usually stayed up until 12:30AM and slept in until 8AM, loving the quiet evening hours to work or relax and gather my thoughts. I did this for as long as I can remember, but now it is time to make some new memories which involves getting up before the dogs.

On the plus side this week, the kitten, which I refer to as my therapy cat, is well enough that he delights in climbing up my body while I am standing still. Yes, his claws are that sharp. And no, I did not teach him this trick.  I am still losing weight, but slowly. Early to bed and early to rise and all that. And a side effect of the one of the meds apparently. Won’t my General Practitioner be ever so pleased when I have beaten her target weight for me? The depression meds are in refills and to my way of thinking have passed some serious times of testing in my life and have proven their worth.  We’ll see what the therapist has to say. I have so much to share with him next time like what it was like trying to explain to my oldest boys what it means that I have an auto-immune disease. “Will it kill you dad?” one wanted to know. “Very unlikely,” I responded.

But I am starting to have doubts about surviving long unless the kitten has his claws trimmed a little.

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2 thoughts on “In Which I Find Other Friends with Facial Rashes and Diarrhea

  1. Keith, what insights into your life — and the lives of those with this disease, or others with similar challenges. Good to hear the meds appear to be doing their job. Praying your next blood tests reflect this as well.

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