One Patient's Positive Perspectives

craving a mocha latte

At mid-afternoon I was craving a mocha latte, and set out on my break for the coffee shop on the first floor at work.  In between my office and my intended destination, I ran into a gal from another department who also has lupus. It wasn’t too long and I almost felt like I was having an out-of-body experience.  Who would believe all the stuff that we were talking about, unless they were in the know about lupus?

To the unprepared person, the nonchalant way we discussed the day-to-day issues of lupus as we caught up on the recent condition of each others’ lupus adventures could be a little daunting.  It dawned on me that to the casual listener or passerby, our reality with lupus might seem utterly unbelievable and unreal!

utter fatigue from l upus

First, there was discussion of fatigue and how utterly exhausting my friend was feeling.  Then the encouraging thought that all of us lupus patients feel that way quite often, and it should not be alarming.  Then, a discussion of shared digestive issues  (I know, T.M.I.) that are so utterly disruptive to social life, and yet we have resigned ourselves to accept and live with the imposition of this lupus-caused discomfort and indisposition without warning.

impact of exercise on lupus

Next, we were chatting about exercise and the positive impact it as upon joint pain, circulation, tendon health, emotions, etc.  Followed by a detailed discussion of the narrow exercise options and restrictions we face: no sun, no impact, and the need for slowly working up the duration and rigorousness.  We discussed types of equipment that seem to work, and those that don’t.

medications for lupus

Soon our conversation turned to current medications and treatment plans. The long list of drugs we each rattled off was enough to turn any passing head in concern and amazement.  Scores of medications, this supplement and that, and what the benefits have been from taking them.  We spoke about the results of various anti-inflammatory drugs we have used, and how we reacted to them. Of course, we didn’t leave out the chemo drugs!

doctors are people, too

At one point we compared notes on our rheumatologists and evaluated their bedside and office visit manner, and swapped stories about methods and strategies for achieving the most successful results from our visits with our doctors.  It was comforting to agree that they, too, are just people, and that applying some kindness and people skills in our dealing with them, coupled with frankness was always a good tactic.

talking about lupus with others

Eventually, my fried introduced me to a co-worker that walked up and joined into our conversation.  At first, I was not certain how much she might or might not know about the discussion she had happened upon.  I found myself feeling almost sorry for her, and somewhat obliged to move toward more generic conversation.  Speaking with her about the support of our employer for ADA accommodations for lupus was a good quick transition away from lupus patient chatter to more benign and inclusive workplace gab.

the foreign language of lupus

The arrival of the third person had suddenly made me realize from an almost out-of-body perspective how obscure and perhaps frightening the “foreign language” of lupus patient chat might sound to the uninformed outsider.  We take so much for granted that we have learned to accept about our lupus.  Lupus is not for the faint of heart, that is for sure!

I chuckled to myself about the litany of things I have become used to discussing in my lupus adventures and headed off to find the mocha I had set out for 15 minutes earlier.  Quite a chat between me and my latte!


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