A Good Day

teachingpicSo often when you have a chronic disorder, especially a painful or debilitating one, it can be difficult to talk about the good days. That seems counterintuitive, right? Shouldn’t we want to talk about the good days more than the bad?

Of course we do! Thinking of the good days is what gets us through the bad ones. And yet, so many times when I’m writing on this blog, posting on Facebook, sharing on Twitter – I find myself posting far more frequently when I’m frustrated or hurting. Certainly those are times when I need support – of course! And I have to admit that posting when I need support has made a tremendous difference in my recovery time and overall attitude. Yet I also find that posting when I’m happy – on the good days – is just as important!

So here today, just for all of you, I am posting my sheer happiness in waking up this morning on a gray winter day in Atlanta, when the silver lining seemed so shiny and bright…

Mornings

Mornings have never been particularly easy for me. As a kid, I had insomnia, and waking up during high school often meant three different alarm clocks that invariably were destroyed or slept through. But for the past nearly seven years, mornings have been near impossible.

If you haven’t yet read about Christine Miserandino’s Spoon Theory, it’s the idea that everyone wakes up each day with a certain number of spoons with which to allot varying daily tasks. Take a shower? Spoon. Go to work? Three spoons. And so forth. But we don’t all get the same number of spoons. And for some of us, a shower can cost a helluva lot more than a single spoon.

Mornings for the past seven years – since my SJS episode – have been like waking up with more than a few of those spoons shoved into my eyes. I’ve undergone around 15-16 eye surgeries, some here in Atlanta and others with a fantastic SJS specialist in Miami, Dr. Tseng.

It was my first surgery with Dr. Tseng in 2011 that prompted me to start this blog. He was giving me sight back in my right eye. While compications with my rheumatoid arthritis (RA) did not allow that sight to last, his surgeries did give me something else. Through resurfacing the eyelid, he removed the constant pain from my right eye. And last week, he did the same with my left.

Surgeries are never fun. I currently have a “contour bandage lens” in my left eye to keep the stitches from scratching my cornea, and I’m on several different medications for after-surgery pain and inflammation. But when I woke up this morning, something miraculous happened…

FBpost

Words really cannot describe how incredible it was this morning to open my eyes and simply see. No pain, no fear, no fatigue from the fear of pain. Just sunlight creeping into my room, wishing me a happy morning…

And a very good morning to all of you, dear readers! Keep your warm memories snuggled near to you this winter, and the happy sunshine under your wings!

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7 thoughts on “A Good Day

  1. What a brilliant post, Alex! So glad to read that things are on the upswing and you are feeling better. Here’s to many more days of the same!

  2. Yay, Alex!! XX Sent from my iPhone

  3. You are an inspiration to me everyday! Love to here you have less pain. You are a fighter!

  4. Alex I just wanted to drop you a note that extends our true concerns in your support. I think about you many times and pray for your healing; and this morning is one of those same moments out of many. Wishing for you to have an extremely nice day full of smiles and comfort! Hugs!

    • That’s very sweet of you, Lee. Thank you. You might also consider donating to the Arthritis Foundation or spreading the word about the dangers of Stevens-Johnson Syndrome and how it impacts so many lives!

  5. Reblogged this on Howdy Hydrocephalus and commented:
    Found a fellow blogger & Stevens-Johnson Syndrome survivor. Check out her blog!

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