New Year, New Sight

Happy New Year, readers!

I have some good news, some bad news, and some potentially exciting news….

The Good News: The site will indeed be moving, diversifying, and getting more consistent. I have purchased MySuddenSight.com and am in the process of building the site. The new site will include guest posts, health articles, some of my favorite recipes, and podcast interviews. Plus, of course, my personal blog posts. I had intended to launch a bit sooner, but…

The Bad News: My eyesight has been diminishing in the past few months. The translucent epithelial layer (eye skin) over my left cornea (the one I see out of) has been clouded for a long time. My eye doctor has been saying for some time that my eyesight should be 20/100, but somehow my brain has been compensating to 20/40. Even 20/30 on a good day! Unfortunately, the clouding has finally caught up to me. It started with enlarging my computer screen. Then, I stopped driving at night. About three weeks ago, things shifted pretty quickly for the worse. I’m not driving at all. I can’t do much at all without my scleral lens.

I have surgery scheduled for January 13. My surgeon will be removing the cloudy epithelial cells in the hopes that they will grow back clear. The recovery time is about two weeks with a Prokera – a plastic ring with amniotic membrane strung across it that gets inserted into the eye socket to encourage healing. Fun. Times.

The Potentially Exciting News: I may be a good candidate for ocular stem cell replacement. I will do a more thorough write-up later. For now I will say my Atlanta doctor called me on Christmas Eve to tell me he’s been in touch with the only doctors in the world who are doing this surgery. They are figuring out medical and legal logistical while I’m figuring out how to pay for probably three trips to Milan.

See you on the new site!

My Sudden Sight

eyes2Last night, I watched the movie Cake, which stars Jennifer Aniston as an ill-tempered woman dealing with chronic pain. Seeing her move slowly and robotically, small gasps with every effort, brought back some difficult memories. But also a clear sense of strength and of hope.

As anyone with chronic pain can tell you, it becomes so much more than a physical nuisance. As hours turn into days, days into months, and months – sometimes – into years, even the smallest discomfort becomes a nagging, petulant child. It sears through your every thought and bears down, constantly testing your emotional capacity to function like an average human being.

For me, waking up has been the hardest part of my day for 7 ½ years. Right now, I wake up sluggish, but with minor discomfort. The dryness in my eyes is easily cured with a drop or two of TheraTears and some eye-rolling to work the solution around. It didn’t used to be so easy. Immediately after the hospital, before I started wearing soft lenses to protect my eyes from the rough scars on my eyelids, I would wake up to near unbearable pain. I would spend an hour or two just praying to go back to sleep so I didn’t have to open my eyes.

The room at my grandparents’ was dark, its single window shaded, and I had a bathroom to myself. Most mornings I would get up, use the bathroom, and start getting ready to walk downstairs without opening my eyes. It was still painful, but not as painful as having to open my eyes. Certainly not as painful as blinking or walking into the main part of the house where the harsh sunlight pelted me with rays like acid.

After each surgery, things seemed immediately worse, then better, then worse again. The pain pills masked the abating pain for a week or two, and the high doses of Prednisone kept the inflammation at bay until I had to taper down. I quickly discovered that pain pills work best when you stay on schedule, even setting an alarm to wake you up in the middle of the night. Otherwise, you wake up crying out loud from the pain – in my case, tearless.  There are still some days when I hit a rough morning, take some acetaminophen, and wait another 30 minutes for it to kick in before opening my eyes and starting the day.

Regardless of whether or not I wake in pain, the fear of that pain lingers. After a year or so, thick scar tissue grew across my right cornea, and I eventually convinced my doctors to let me wear the soft lens in my left eye full-time. The pain lessened, and there were even some days that I felt in control of it. But the fear of that pain remained. With each slight discomfort came a wave of adrenaline and the frantic thoughts of how to stop the pain before it started. There was one year where every Wednesday, it seemed, I would come home and have to lie in a dark room for an hour, forcing my eye open with my fingers to put in drops every so often until the pain became bearable. It was like a timed migraine radiating from my left eye socket. They came untimed, too, forcing me to lay my head down on the desk at work in between customer service calls, covering my face with my arms to block the florescent beams.

But that was four years ago. I have come so far since then. If had you told me then that I’d still be fighting to recover, but functioning on a much higher level now, I’d have shed liquidless tears of joy and unrelenting dread.

Pain is more than nerves firing to tell your brain something isn’t okay. Pain is a trigger for reaction – bodily and emotionally. Pain that returns again and again is the harbinger of a fear that sits deep in your thoughts for maybe the rest of your life.

In the face of all that pain and fear, it can be difficult – impossible – to find hope that it will ever end. Four years ago, I did give up hope. I told myself that the pain was my new life, and I would just have to learn to deal with it. Without that hope, the pain overwhelmed me, and I nearly drowned in the worst depressive episode I’ve ever experienced. I wish I could say there was a moment where everything changed and suddenly my passion for life revived! It was, instead, a slow and grueling climb back to some semblance of normal.

There was, however, a moment that gave me the first taste of hope I’d savored in a long time. In May of 2011, I saw a new surgeon in Miami whose procedure (briefly) gave me sight again in my right eye. The surgery didn’t take, and the scar tissue grew back. The pain lingered, and the depression got worse before it got better. And yet, there was this one week were I began to recognize the faces of my loved ones again. It was enough.

I believe, now, that is what I meant when I started this blog and named it “SuddenSight.” It is that moment of hope, that brief flash of light from a tiny hole to world of “normal.” Removing the bandages and correctly counting the nurse’s fingers with my right eye for the first time in three years – that was my sudden sight to hope again.

What’s yours?

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…

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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!

Once More Into the Breach

eyesI’m sitting in a hotel room in Miami, mere hours from the next chapter in what has become a seven-year climb. I suppose I could think of my steady stream of surgeries as a mighty war against the scar tissue that continues to threaten my vision. Tomorrow’s surgery is but one battle of many in a long siege that the guerrillas seem to keep winning. Each time the surgeons believe we’ve beaten back the insurgents, and each time the inflamed warrior rises again to conquer!

I could see this as a mighty war, but no. Instead, I choose to see these trips as tricky crags on the mountain of my life. A mountain I have no intention of quitting, no matter how Sisyphean the task may seem. And Sisyphean the task may yet be…

In May 2014, my Atlanta doctor performed a surgery on my left eye (the one with full sight) to cut back the scar tissue which connected the eye to the eyelid. He stitched a donor cornea over the surgical site, hoping it would act as a barrier to keep the scar tissue from returning to envelop eye and eyelid again. By July, however, the attempt proved to have been in vain.

The tissue has returned in full force by now, and I am seeing Dr. Scheffer Tseng in Miami to try something old, but somewhat new. This time, it is a surgery of my own suggestion – one that I am proud to say Dr. Tseng agreed would do well to calm the tissue. He technically did a similar surgery for me in 2012. Despite medication and attempts to bring back sight in my right eye, the pain of it all was excruciating. Constantly inflamed, the scarring on my eyelids from 2008’s bout of Stevens-Johnson scratched mercilessly against my eye. It was far worse for the right one than the left.

Tseng believed the scratching may well be what caused the inflammation to ruin his remarkable surgery that renewed sight in my right eye for a few months. It had gone well at first! But as has been the case with the left eye, the scar tissue pressed forth – and in the right eye conquered all. So he used cheek tissue from my mouth to resurface the inner eyelid of my right eye, stopping the friction and easing the pain. And ever since my right eye has been blind, but calm.

Tomorrow, he will repeat the surgery on my left eyelid. It is my belief that the scar tissue continues to grow in an effort to protect my eyes from the constant scratching of the scarred eyelid. I hope that removing this friction will mean that the scar tissue no longer has a need to grow. Essentially, I’m negotiating with the terrorists of my body – not unlike the Remicade infusions which calm my RA.

And so, my friends, I go again. Once more into the breach. Once more up the rocky surface, with my fingers strong and my feet steady, hoping to make it past this next incline. Let’s hope for the best!

Try, Try Again

Do you ever wake up and just think, “Not today”?

For those of us with chronic illnesses (or even difficult habits), finding a way out can seem like an impossible task. After years of trying, the trying itself can become a monstrous chore. I know I have certainly had moments where giving up looked like the best viable option. Except, I would remember, giving up means getting worse.

There’s an anxiety that undergirds every new treatment. What if it doesn’t work? How much money am I wasting? How much time am I wasting? How much time do I have left, anyway?

Today I’m going into the eye doctor to be fitted for scleral lenses. Essentially, they’re large, hard lenses with a reservoir over the cornea to keep fluid on the eye. The hope is that this will ease inflammation and keep my eyes from growing scar tissue in an effort to protect the cornea. Sounds fantastic! Frankly, I’ve been hoping to get these for a few years now, but the expense wasn’t an option until just now.

Yet there’s still that voice in the back of my head – the one that reaches down and twists my stomach into knots. What if it doesn’t work? the voice asks. What if this was all for nothing, and you go blind anyway?

It’s a ridiculous notion, really. I’m in no danger of going blind anytime soon. We have several other options before that even becomes a worry. And yet, it remains my worry.

When my anxiety is high like this, I often turn to friends to vent. A simple text message at midnight to my sister will calm me, even if she doesn’t have the chance to respond until morning. For me, it’s about getting the words out of my head and sharing them with someone who cares. Other times, I might find it helpful to talk to a friend who makes me laugh or to watch something funny. I’m proud to say I own every episode of Monty Python’s Flying Circus, and it never fails to take the edge off.

My last resource, as a left-brained “Virgo”, is to plan. I plan what I would do if I did lose my sight or my ability to move freely again. I am instantly grateful for my vivid imagination and my dreams, for regardless of my physical condition, those have remained untouched. I have always loved writing and storytelling, and that has been my solace.

When I was first rebuilding my life in 2008-09, I happened upon a film that changed my life. The Diving Bell and the Butterfly is based on the memoir of a man who has a stroke and loses everything but his ability to blink his left eye. Through months of calculated blinks, he shared a story that gave me strength in that first year.

I actually haven’t thought about his story for a long time until now. Perhaps, if the appointment this afternoon does not go well, I will come home and read his book again. I can find hope in the powerful story and gratitude for my ability to read. Then tomorrow, I can research something new to try.