"If many remedies are prescribed for an illness, you may be certain that the illness has no cure." —Chekhov, The Cherry Orchard

The line above forms the epigraph to one of my favorite poems, “Having It Out With Melancholy,” by Jane Kenyon. While the poem is about Kenyon’s life-long chronic depression, so much of it applies to the experience of any chronic illness— the unexpected changes (good and bad), the miracles and disappointments of drug treatments, the way in which we feel like our lives are taken away without even knowing what happened, and the moments of grace, so much more powerful and precious than they were before we became ill.

The following lines, which make up the seventh section, “Pardon,” capture so well how I feel in the middle of a bad flare and then afterward:

A piece of burned meat 
wears my clothes, speaks
in my voice, dispatches obligations
haltingly, or not at all.
It is tired of trying
to be stouthearted, tired
beyond measure.

We move on to the monoamine
oxidase inhibitors. Day and night
I feel as if I had drunk six cups
of coffee, but the pain stops
abruptly. With the wonder
and bitterness of someone pardoned
for a crime she did not commit
I come back to marriage and friends,
to pink fringed hollyhocks; come back
to my desk, books, and chair.

All of this is at the forefront of my mind tonight because I saw my rheumatologist today. He’s not pleased with my progress on the Plaquenil (I’m still needing prednisone or massive doses of ibuprofen to keep the inflammation down) and wants to add Methotrexate. Based on my response to the meds and my blood work, he’s added rheumatoid arthritis back to the table in terms of diagnosis. So I may be looking at an overlap syndrome/mixed connective tissue disease diagnosis. I have too many symptoms and they refuse to sit neatly in a single disease category. My hunch is that most of us with autoimmune disease are actually like this, but it’s not the way medicine wants to work. Doctors want neat distinctions between separate categories. Taxonomy is comforting. Hell, I was comforted just having a name to give to my symptoms, even if it was “lupus.”

Realistically, I just want to feel better, and if it’s going to take MTX to do that, then I’m willing to try (though my dad had a terrible experience with it, so I’m hesitant). But at the same time I had been consoling myself for the past six months with the idea that with lupus at least the joint involvement would be less damaging, and that with SLE limited to my skin and joints, I had a much better prognosis in terms of lifespan and quality of life. Small consolation, but it was there. Now my silver lining has been ripped away, and I’m not sure what to think. I am indeed “tired of trying / to be stouthearted.”

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