November Update

Met with my ocular surgeon yesterday for my 3 month check up. Overall, he was pleased with the placement of the eyes, but he remarked that the scarring on my face was a less than desirable outcome, as was the sag on my upper eyelids. He would like me to consider an upper eyelid surgery this spring, as well as some botox around the eye to speed and improve the healing around my scars…..I’ll post some photos later today when my camera shows up! LOL!

I’m torn about the botox. First of all, it’s not covered by insurance, and costs about $20 a unit. He is suggesting 20 units total, so that’s $400. Second of all, its botox….a second cousin to botulism. Also, I’ve seen many an actress who has had a few too many units of this stuff (like Nicole Kidman) and they look like they are devoid of any kind of personality.

The upper lid surgery will probably happen, though. But I’m not making any decisions until January. I want to enjoy my holidays without thinking about my next surgery, thank you very much!

photo update….

I’ve been meaning to post these updated photos….they were taken mid-September:

 

Update:I still have significant numbness….if you look closely at the shot of my left eye, you will notice that it is still slightly larger than the right. It has also not healed as well, which I attribute to them taking me off the erythromiacin a week early (they thought I was having an allergic reaction to it) there is a knot the size of the head of a seamstress pin (larger than the head of a regular pin, and more raised) on the scar on this eye, which is a minor cosmetic set-back.

I have not lost any visual acuity, and in fact it seems that much of my vision is improved.

Would I do it again? Ask me in 3-6 months. I still hate that I feel like I’ve had a head transplant every time I smile….although I am starting to have some feeling return to my nose. My “neutral” face used to be a pleasant blank face…now I frown whenever my face relaxes…I find myself pulling up the corners of my mouth just to look like I”m not scowling….which is an odd feeling….as a result, I continue to avoid most social situations, unless I know we are going to a dark restaurant, or bar. Come to think of it, the more I drink, the better I look! LOL!

 I still have significant puffiness in my face, and the 12 weeks I’ve spent on bed rest have made me pretty bloated and ridiculously out of shape. I’ve just started walking 30 minutes a day, and hope to increase my daily activities starting next week. That and a 1,300 calorie a day diet will hopefully allow me to loose some of the extra 10 pounds I’ve put on since the beginning of summer….good thing it’s now sweater weather!!

Things I wish I’d known about Orbital Decompression Surgery.

There is a list of things to think about as you prepare for ODS…they are things I wish I’d been warned about

**I wish I had discussed in detail with my doctor during the pre-op appointment about what kind of pain medication I would be on, and the appropriate dosage. In a perfect world, I would’ve had that prescription filled BEFORE the operation, but the Casey Eye Institute doesn’t allow narcotics to be dispensed until AFTER the surgery, because they’ve had problems with people canceling surgeries and keeping the drugs. In my case, the underling doctor under my surgeon prescribed a dose that was ridiculously low, and I suffered through the first day and night because of it. Drugs are your friend for the first 48-72 hours…..don’t even TRY to be brave about it.

**With my second surgery a week later, I wish my doctor had told me that there was a chance that the would choose NOT to remove the stitches from the operated eye. This would’ve given me a chance to make some rudimentary adjustments to my home to make it more friendly to the vision impaired. It wasn’t the end of the world, because my mom moved in for the month and really helped out, but a little forewarning is better than a last minute surprise, IMHO.

**I wish I’d realized for just how TIRED I would feel for the first 6 weeks. My doctor did tell me this, but I just didn’t believe him. I historically bounce back from major surgeries: I insisted on walking around the hospital ward just hours after a both c-sections (much to the nurse’s surprise) and I was at a neighborhood BBQ just 48 hours after my hysterectomy. The ODS was different. We’re talking about napping all day and sleeping all night. I never made it by the pool with the kids, and I barely made it into the dining room for meals. One of my favorite memories is my friend Jan visiting me and crawling into bed with me! I am just now feeling like I can go the day without a nap, and hope to resume aerobic exercise this weekend.

**I wish I’d thought the timing of the surgery through….I should’ve put it off until the fall/winter, when Oregon is overcast and cold, instead of during August, Oregon’s sunniest and hottest month. We have windows that face the west, so even with the air conditioning on, the bright sun in my bedroom became unbearable. We did the ultimate white trash thing and taped up tin foil on the windows….it was real perty. I missed out on some of the last fun days of summer with my kids, and my son’s last few weeks at home. I’ll never get that back. But, I DID dodge the back to school shopping bullet, as my mom stepped in and spoiled her grandkids.

**I wish I’d known that they were going to put me on 2 courses of Prednisone. I know there isn’t much I could’ve done about it, but knowing ahead of time would’ve prepared my poor husband for the evil that was about to ensue.

** I wish my doctor had given me a realistic idea of just how much facial numbness could result from surgery. Eating a sandwich is tricky, as my upper lip  doesn’t want to  lift, and drinking red wine in public is out of the question, because I end up with what looks like a kool-aid stain!

THINGS TO DO BEFORE YOUR ODS:

*If you have kids, make arrangements to have someone care for them (and you) for at least the first 72 hours. You will be tired and drugged and you need only focus on healing yourself. If my mom hadn’t come down, I don’t know how I’d handle it.

*Make sure that your household is prepared for at least 2 weeks without you. Pay your bills, cancel appointments, and make sure your house is uncluttered and ready for you to stumble around with limited vision.

*Realize that you won’t be driving any time soon. I’m lucky enough to live in a city with grocery stores that deliver. I took advantage of that service, and the one that brings any local restaurant’s menu to your door. Let neighbors pick up groceries at the store (if they offer, lol) and just be prepared to be a little helpless for awhile.

*Don’t expect miracles from the surgery. I’m still working on this one. I’m disappointed that, although my eyes look better and are not nearly as protruded as they were, my eyes are not as symmetrical as they used to be.  I used to have symmetry to my face, even with my eyes bulging out. Now my left lower eyelid seems less tight than my right, which makes the whole eye seem larger. But, I have to keep reminding myself that it’s better than it was…it’s just not the way I looked pre-Grave’s disease.

On the Road again…..

I’m cleared to drive again. Its amazing how simple life becomes when driving comes off the table. I need to post some photos, but I got a new camera and I’m lazy!! My eyes look pretty good….the left eye is still slightly larger than the right, which is driving me crazy, but I have to remind myself that it was operated on last, and it may take longer to settle in.

I feel as if I’ve had a head transplant. I am still numb from my lips to my eyebrows, and my temples still ache when I brush my hair. My cheeks and nose remain swollen, but the under eye swelling has receded a bit. With my facial muscles numbed out, I find that my relaxed face is a frown, and smiling feels really odd, and looks even more odd. DH keeps teasing me about looking, uh, fugly (how nice!) But, it’s the truth……

He keeps asking me where my glasses are. That’s code for “Baby, your eyes are fugly, do something to hide ‘em”…..Somewhere in the confusion of the operations, the percocet, and the visitors who meant well, but hid all my kitchen items, I’ve lost my everyday glasses. So, this past weekend I bit the bullet and bought a new pair. I didn’t bother with an eye exam, and opted for the same prescription I’ve had for the past several years…..hope that wasn’t a mistake.

I just couldn’t wait for another month, and I wanted something to hide the big red scars on the side of my eyes. I’m not one to wear make-up on a daily basis, and people think I’m stoned when I walk through the grocery store with shades on. So, I look forward to picking up my frames sometime in the next week, and venturing out into the world again, beyond these four walls and the children’s school.

Latest Update

Well, just got back from my Doctor’s check-up two days ago and things are going swimmingly. They still can’t get over the fact that I have no area bruising to speak of, and the eyes themselves are doing fine. I opted out of having him remove the stitches in my left eye, because I just was tired of people monkeying around with my eyes….that proved to be a mistake, because when the dissolvable stitch broke yesterday, it left behind a half inch of stitch that floated around in my eye for a day until I finally got up the courage to poke around my upper eyelid and pull it out.

My right eye’s stitches are totally dissolved, and the scar tissue is looking pretty good. The left eye still has visible stitches, and I imagine that will be the case for another week.

I’ve now been in bed for almost three weeks, and it’s getting old….but what should’ve been a fun Sunday drive turned into a miserable afternoon, because I get queasy when my eyes have too much to focus on….we went to my favorite breakfast spot, and I know people thought I was weird wearing dark shades on a rainy day!

I’ve got the joy, joy, joy, joy…….

“mommy?”

“Yes, Honeybear?”

“Is God in my heart?”

“Of, course, Sweetie.”

“Then, how can I face him, if he’s in my heart? I want to see him, and I want him to see me…..I know he’s going to want to face me in heaven, right?”

These are the questions I was asked this morning at 2am by my ridiculously cute 8 year old daughter. She is the spiritualist in the family. Born on 2-2-2000 at 2:02pm, I’ve always known that someone is looking out for her, which is a tremendous blessing, as she was born with multiple mid line birth defects.

She has had multiple open-heart surgeries, as well as surgeries on her spinal cord and numerous exploratory surgeries. She has permanent brain damage, and there will be heart surgeries in the future, which keeps us all on our toes. Lately she has been regressing, and her toilet training has gone out the window since mommy has been recovering from surgery. This makes me nervous, because school starts next week, and I really want her to fit in with her peers, and not be the kid in pull-ups.

But, then she wakes me with questions on religion, and it puts everything right back into perspective for me:

How can I even begin to feel sorry for myself, or even start to complain about recovery when my little one has been through many more traumatic operations? And she bounced back each time, with her eager smile and determined attitude. She has taught me more about recovery than I will ever know on my own…she’s my hero. And my 2am spiritual guide.

She’s better than the old 24 hour Church of Elvis!!

Halfway there….

Well, I am in the second week of surgical recovery, and I’m still amazed at how tired my body is. Tell me how it is that I can focus on the tv in my bedroom for hours at a time,but one look at the Target circular in the Sunday paper makes my eyes reel in pain?

The stitches in my right eye have definately dissolved, but my vision is still pretty blurry in the right eye compared to the left. The healing, on the other hand, looks much better on the right eye, which makes me believe that I will be feeling much better in about a week. Until then it is all I can do to lie low and wait it out. My husband is impatient for me to bounce back, but it’s just not that easy for me to jump in the car and run errands just yet.

What light through yonder window breaks?

Today my right eye began to open oh-so-slowly as the swelling went down. I started to realize that, while it was easy to continue taking bromelain and arnica montana for swelling, as they were by my bedside arsenal of meds, the Monavie was a bit harder to remember, because it was all the way in the kitchen fridge. Now I have my mom giving it to me twice a day, and the swelling and bruising should go down.

The following photo was taken today, with me forcing my eyes open:

eyes open.....11/22

So, I can see a wee bit through my right eye, which is a huge relief. I found many things to be grateful for when I was blind, though: Thank goodness my affliction was temporary…not seeing my little girls everyday would kill me. That being said, there was a simplicity that came when you could not see the clutter in the house, lol! But seriously, it did give me plenty of time to think about how much simpler my life could be if I wanted to take the steps to make it so. When life is condensed to the bed and the bathroom, it can’t be much simpler. Of course, eventually I would have to venture out into the kitchen, which would’ve caused me to clean out all those cluttered drawers and cabinets that drive my husband wacky. Note to self: clean house as if you were blind next time.

I am convinced now that the third day post op is the most painful. Therefore, I look forward tomorrow.

seriously?

So, forgive the typos, but now I’m typing blind. Dr. Dailey decided against opening up my right eye when he went to do the decompression on my left. Seems the inside liner is still too swollen, and he wan’ts to be extra cautions. For this reason, I will not be posting any photos today, as I can’t see to take them! LOL!

I’m pretending that I’m doing an actor’s study on “wait until dark”

My mom will take photos today, but I have no idea how to post them, so it may slow down this blog for a bit.

Othere than that, the surgery went better. I chastized the doc who wrote the ridiculously low prescription for percocet, telling him that my mother was playing nurse ratche and being very strict about the one percocet every 6 hours, no thanks to him. The ony response I heard was “That’s odd….” I replied “Odd?> painful is more accurate”……I’m sorry is not in this doctor’s vocabulary. Go figure.

Thanks for all the cards, flowers and positive messages here and on myspace/facebook/phone calls, etc….. Special thanks to those bringing by food, as it takes a little off my mom’s plate.

Well, here’s looking at you…..or not….

’twas the night before surgery…..

So, tomorrow is part 2 of the orbital decompression surgery. I’m trying to enjoy sleeping for moments at a time on my left side, because as of tomorrow I will be a back only sleeper. I am a total side sleeper, so this has been one of the largest adjustments I’ve had to make. I’m sleeping on three pillows and propped up with one of those corduroy backrests from the 80’s. The pillow furniture I bought in college is still useful, as I’m using the bolster pillow to support just under my knees.

I knew my husband and I were meant to be when my college pillow furniture: a wide corduroy in dusty blue with pink stitching, matched his first marriage furniture: a monster couch in pink and blue herculon. A match made in heaven.

My surgery isn’t until noon tomorrow, which is a bummer, because I won’t be able to eat or drink anything all morning. Me without coffee only goes so far.

Last time we went out for a last supper at Shari’s, where I am in love with the veggie omlet with stuffed hashbrowns. But, since I can’t drive and everyone else is asleep, it’s fruit salad and brownies tonight.

I’ve managed to go all day without so much as a Tylenol because I want to be sure that the percocet works the way I need it to tomorrow. I’ve been weaning myself off for the last three days, knowing that the next three days will be the most painful.

I’m looking forward to the halfway mark, but I’m nervous about this upcoming surgery…especially since I know how much discomfort I will be in for the first 24-72 hours. I asked my mom if I could just stop here and not do the other eye, and she reminded me that I had the same reaction when I got my ears pierced….the poor lady at Spencers was chasing me around the store as I screamed and cried “I changed my mind!” I eventually gave in, and let them pierce the other ear, and I know I’ll go through with tomorrow’s surgery.

Knowing that I was about to go down for several more days, I ventured out into the world with my mom and kids. the outing du jour was to New Seasons, my favorite grocery store. I figured we could pick up a quick dinner there, and I could get more arnica montana, which is part of why my face isn’t more swollen and bruised. Big mistake, venturing out.

I never realized how much we see when we are passengers in a car….the speed at which objects fly in and out of view are dizzying if you’ve been on a low stimulus eye diet. Then there was the store. I was nausious the minute I walked in. And people have no idea that I am blind in one eye, and they keep walking in front of me cutting me off or, even worse, bumping into me. So, I started putting one of my daughters on my “bad” side to shelter me….between my daughters sheilding me and my mother lording over everything, and the fact that I was wearing dark shades when it’s 70 degrees and raining, I’m sure I looked like I was running away to a battered shelter with my kids. LOL!

We had planned to go get a couple of koi and rent a movie right after dinner, but I was eshausted from the outing, and went right to bed.

I will not be posting more than a pre-surgery photo tomorrow, but I’ll hopefully check back in as soon as I’m up to it.

If you say “break a leg” before a performance, what is the proper pre-surgery salutation? All I can think of is

cross my heart, hope to die….stick a needle in my eye.