Why do I need surgery?

I appreciate everyone's care and concern and would like to use this format to answer your questions. Be warned, if you are squeamish, there are some pretty gross photos, details and a video included. This isn't a laser surgery. They stick crap up my nose and break bones in my face! Eeeks!

So, here's the background...

In my 20's, I was diagnosed with Graves disease, a thyroid/autoimmune disorder. A couple of treatments with radioactive iodine killed off my thyroid, and regular blood tests and synthroid kept me on an even keel for many years.

And then many years later, I worked in food service in a school, and when my boss asked if I had pink eye, I took a quick trip to the eye doctor. Treatment cleared it up, but the redness always came back again. It wasn't pink eye. The symptoms subsided, and I was happy to ignore things for a couple more years.

The stress of a new job seemed to flare everything up again. There's nothing better than starting a new position, and needing to take off every couple of weeks to see yet another eye doctor. Thank God for an understanding boss. Each time I went in, the doctor would look at me and say, "Hmmm... perhaps you should see... " and name another doctor in the group at Illinois Eye Center. I planned to ignore it and give up, but the serious looks on the doctor's faces convinced me to pay attention this time. At last I landed with Dr. Cuite, and a diagnosis of Thyroid Eye Disease and scleritis, both related to the Graves disease of many years ago. Fabulous - TWO rare eye diseases. Always the overachiever. (For those who want to know more - http://www.medicinenet.com/scleritis/article.htm)  Immediately, she suggested orbital decompression surgery. Even with all the pain I was going through, I didn't want to consider surgery yet. I Googled it, and it didn't sound like any fun.

Did I mention the pain? Get a really big guy to punch you in the face hard, and then stab a pencil in your eye. That's kinda what it feels like. By dinner time, all I wanted was darkness. Sit in a dark room, with my hands over my eyes and a blanket on my head kind of dark.  Eye drops five times a day, steroids, plugs in my tear ducts and an eye mask and ointment at night brought the pain to a tolerable level. A recent change in my eye medication includes a compound made with corn oil. It feels delightful! Seriously! Best relief I've had in 5 years, but the gooeyness of it means no eye makeup and everything is blurry for about an hour or two after you put them in. Recently, I needed to give a speech. Standing in front of 75 people, I look down at my notes - and found them to be a big smudge. Hmm. Oh well, speeches shouldn't be given at 6 AM anyway.

Even with this management, my eyes bleed at least once a year. 

On my last appointment, Dr. Cuite quietly told me I don't need to live like this. She says I have been stoic long enough. Huh. Not flinch in the sun? Go outside when it's windy? Be able to sew again? That could be nice. Have a conversation with someone and not think about the searing, stabbing pain in your eye, and wonder if they can see the torture? Stop checking the mirror because you are convinced blood is running out of your eyes? Yes, it's time to get this fixed.

So, the next six months are all about me. January 3rd is the first surgery on my left eye. The right eye will be fixed about 2 months later, around the beginning of March, and finally, she's going to reconstruct my eyelids the beginning of May. They don't close properly, so my eyes are truly never shut.

This isn't for sissy's, my Mom would have said. Orbital decompression involves breaking the bones around the orbit to allow the eye to recede further into the socket. In my case, she'll go along the nose, and under my eye. (http://omardurrani.com/decompression.htm). She'll also remove some fat. Of all the places on my body that I could get fat sucked out of, and we choose my eye socket. I've always been a nonconformist.

Here's what my eyes look like today. The lower lids are supposed to touch the iris (colored part), and the upper lids should come half way down. And it's not supposed to feel like someone is poking a finger in your eye all day. That would be so awesome.

Getting ready for surgery

I've spent probably way too much time on the internet reading blogs from others who have had the surgery. I usually end up crying, but I've learned so much. The best thing I've learned is how fortunate I am to have my wonderful support system. My oldest daughter, Katrina, will come home for a few days to help the day of the surgery and beyond. My youngest, Janet, lives in Peoria and will be here to help with the dogs and every day issues. Husband Dave is a blessing, helping me cope with the nerves leading up to surgery. My doctor is skilled, experienced and caring, and only 15 minutes away.

I've gotten a few things done already to prepare. Research, research, research! Thank God for Google. We've checked out the doctor's credentials. I've read up on others experiences. I've bought comfy sweatshirts that can fit over my big, ow-ey head. I've scheduled my bills to be auto-paid for the next month. I've stopped all blood thinners - which for me means no fish oil or Advil. I've planned meals that will be easy to chew. There's a possibility of stitches in my mouth, and nerve damage to my face. I cleaned up and caulked the bath tub. Who wants a mildewy bathtub when you don't feel good? I've gone to confession, and set the DVR for a bunch of movies I've been meaning to watch. I've isolated myself so I don't catch the flu before surgery and screw up the entire schedule. I've eaten all my favorite foods. I asked my veterinarian if this is a good idea.

Here's what I expect the day of surgery: I won't know the time until the day before, but it will probably be in the afternoon. She schedules her easy surgeries for the morning, and moves on to the more difficult. That's not the first time I've been called "the more difficult", so no offense. I won't be allowed to eat or drink after midnight. My pre-surgery brochure says I should take a bath before coming. Really? What I want to know is how many stinky people did it take before the nurses begged to have that included in the brochure?? I'm told once I get there, I can have a 'cocktail' to calm my nerves. I could use that now. Surgery should take about two hours, and they'll send me home once I wake up. I expect that will be 8 to 10 PM that night. I'll be bruised, swollen and might have stitches at both corners of my eye. She'll go in through my eyelids and possibly my nose and roof of my mouth to avoid as many stitches and scarring as possible. Most likely I'll have double vision as my eye learns it's new place. Typically, that subsides within a week. On the third day, the swelling increases substantially. I'll go in for a recheck on day 4 (Tuesday), and plan to be back to work on the following Monday. I will not be allowed to bend over or lift anything for about a month. And then we do it all over again two months later on the right eye. Two months after that, she reconstructs the eyelids, so that the lower one can meet the upper one. She'll also remove extra skin from my upper lids. I've seen two of her patients and they look pretty good, so that doesn't worry me as much -but they tell me for this surgery, you must be awake. Oh. Dear. God. But she lets you choose the music. And they shouldn't stick anything up my nose.

What do I Really expect the day of surgery? Some pretty good Fear. She's going to break my face! And stick things up my nose! I'm worried Dave and Katrina won't get enough to eat. Janet is in charge of seeing that everyone eats that day. Skittles for everyone! (Janners, just give them a power bar and a bottle of water.) I'm worried I'll bleed on furniture and puke in the car. (Fair warning, Daughter, your mommy is a mean drunk with a potty mouth. Don't encourage it when I'm coming out of anesthesia.) I'm worried she's going to stick crap up my nose and give me a brain infection. I know I'll never look the same again, and I'm really worried my face will be just.wrong.

What can you do to help?

• Don't throw up when you see me for the next 6 months. We all know what every girl wants to hear is "Eww, you look really gross!" Honestly, I'll already know it. And if it bothers you, think how much it's bothering me.
• Pick things up for me. This is going to bother me the very most, I think, besides that sticking crap up my nose. I can't lift anything over 5 lbs for at least a month each time. Do you have any idea how many things weigh more than 5 lbs.? Everything.
• Forgive me if I'm snappy. Yippee for prednisone and pain. I'll try to behave. It's not your fault, mostly.
• When I'm sad, my dog Amos sits on my head and licks my chin. But I'd rather that you don't. 

Ok. Now we wait. For 5 more days. This should be a fun week.