Lupus in Technicolor

Wanna hear something funny?  Ok — less funny — more sad.

Today is December 1st!

My last post, about never having enough time — was almost a month ago.  And I — STILL — HAVE — NOT — UPDATED — MY — PHONE!

I don’t have an excuse for the first few weeks of the month, but these last two weeks have been slightly shy of hell.  This place — surrounded by trees, covered in clouds nine months of the year, this cold and constantly wet place?  This place is the perfect place to have lupus.  The difference between being in a “flare-up” and being healthy?  It’s the difference between dark months and the bright sunny skies.  It’s the difference between a panoramic shot of the bright mountains, flowers in every color of the rainbow, vibrant green grass, trees in every hue of green — and a somber black and white snapshot of black skies and shadowy mountains tucked away and forgotten in the back of a file folder.  This place (on a good day) is lupus in technicolor.

After a long and warm summer (and then tolerable fall), I was hopeful that I had beat the disease.  I spent the pain free summer fine tuning my business plan, applying for a new degree program, cooking new dishes, playing with my children.  I even thought the original diagnosis was an error.  Besides the splotches on my skin and the bleeding scalp (ok — in retrospect I guess those are very clear symptoms — stay with me here) I was mostly pain free.  I had occasional fatigue and joint pain but nothing like it was when I first became ill.  Remember the swollen and scabbed eyes and scars on my neck?  Remember when lupus started eating my eyebrow? THAT:  I didn’t have that!

Two+ weeks ago when the temperature here dropped below 30 degrees and the cold rain started again, it might as well have been pouring acid all over my body, from my head to my toes.  Not like I was standing in a shower of acid, but like I was laying flat on my back and some sadistic son of a bitch was pouring acid all over me.  And then massaging it in for good measure.  I want to tell you that I’m being dramatic.  But if you have lupus, fibromyalgia, rheumatoid arthritis, or any other disease whose main symptom is chronic and severe pain:  then you know that what I’m saying is true.

Before I knew that I could call my pain something, I had a very high tolerance for it.  But now that I know — pain works me over — it changes me.  And I let it.  It changes who I am and changes who I want to be.  It changes the future I envision for myself.  It makes me into a person who is bitter and angry and guilty and then thankful and then bitter again.  Quickly and in that order, over and over until I will myself to sleep for a few hours only to be woken up by the throbbing again.

And now I think this flare is over.  *crossing fingers*  This place is not a perfect place for the disease.  In fact, the Pacific Northwest is probably the worst place you could possibly live with a chronic and inflammatory condition.  But it is a perfect place for me because when the rain stops (and it does on most days) and the sun finds a way to come out (even in the middle of winter), I see and feel and have —  color and hope and relief.  I’m reminded that it will get better, even if it doesn’t stay better.

And then I’m me again.



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