Sunday, August 24, 2008

It's All About The Onions...

Okay, so here's the deal. When you have facial paralysis, your eye doesn't tear which means that you must be very careful to keep the eye artificially moist with tears, gels, etc. One of the things you can do is create a "moisture chamber" which keeps the eye sealed, thereby allowing any moisture to stay in the eye as opposed to evaporating.

Stay with me here - I'm going somewhere with this ... and there are pictures! Several of my friends on the Acoustic Neuroma forum who are dealing with face and eye issues have been on a quest to find things that can act as a moisture chamber for the eye. Voila! Enter .... ( drum roll!) ... Onion Goggles!!!

Yes, folks, Onion Goggles! A handy device invented for cooks to wear while chopping onions so that their eyes won't tear. They are available in finer chef's stores as well as on Amazon and E-Bay. The theory is that if the goggles provide enough of a seal to keep onion fumes out, then they will also keep moisture in.

They come in a choice of colors, one being pink which supports breast cancer research. Need I say more?

But, enough of my chatter - judge for yourselves... (And thanks to my dear friend, Peg, for being the photographer on this...)

Oh, and Lorenzo - The evil Ethel was 2.4 sticky cm when removed...

Thursday, August 21, 2008

My Brain

So, I thought it might be fun for those viewing from home to see what an acoustic neuroma actually looks like ... Here is a copy of one of my initial MRI views - the big white blob is Ethel before surgery. I will be going for my first follow up MRI in a couple of weeks, so will post a follow up picture when I get that film - hoping to see nothing, other than maybe a couple of small spots. The surgeons left a few "nubs" behind that were stuck to my facial nerve, so I don't even know if they'll show up or not. As tumors die, they stop looking white in films and turn to black, indicating necrosis (cell death, which we like!)
That's all for today...

Monday, August 18, 2008

A Glorious Weekend

Well, the weekend with the posse was great - perfect weather, great food, good wine and - most of all - good friends! And, since a picture (or several) is worth a thousand words, I'll just let the pictures speak for themselves. My smile still sucks, but it's better than it was a few months ago...

So, the featured players ... Top is Willie and I, taken from my "bad" side; second is Peg, me and Kura; bottom is Sean. We're missing Sally, Ellen and Lynn from this gathering, but they were with us in spirit!

I am continuing to get more movement in my cheek, which is very encouraging. Lower lip and eye are still motionless, but I am hopeful that time will heal...

Thursday, August 14, 2008

Another Milestone Reached...

This was a banner week for moi.

On Sunday, I got in my car and drove about an hour and 40 minutes to Cornwall, NY to join several of my colleagues for a "retreat" to brainstorm and strategize for a business we are all involved in. So the first milestone was driving that long all by myself! Fortunately, I was able to put my eye weight on for the drive so I only had to stop once to put drops in my non-tearing eye - yahoo!

I was beset with anxiety leading up to and during the drive. Of the approximately 10 people I was going to see there, only one had seen my "new" face. I suddenly felt like a gawky, insecure teenager. I had several raging internal debates about whether I should just cancel and stay home. Almost did just that a couple of times. I spent most of Sunday afternoon feeling teary and scared. However, I powered through.

Arranged to meet my friend and colleague Denny for dinner - felt that would be a good way to "break in" slowly in preparation for the big "unveiling" on Monday morning. Well, as luck would have it, we ended up having pizza on the patio of the Inn and were joined by three other colleagues - none of whom ran shrieking at the sight of me! Huge hurdle passed!

Monday morning, I met up with all the other folks - and, again, no one ran shrieking from the room.

The two days were successful in so many ways! I got to know some people who I only really knew peripherally before, which was wonderful - we got some great strategies developed - I put in the two longest days yet since surgery - and I did very well at our group dinner Monday night (complete with background noise and lots of people talking - all of which can spell disaster for we SSD folks!)

So, at the moment, I am feeling on top of the world! My friends Kura and Peg are coming out tomorrow for the weekend - this will involve pedicures, wine, food, wine, laughter, wine, dominoes, wine (maybe some Prosecco - thanks for the suggestion, Lorenzo, more wine... Well, you get the picture!

Feeling good in the Northern Compound...

Sunday, August 10, 2008

Eye Update

Well, after sufficiently resting my eyelid, I once again affixed my Blinkeze to my lid this morning. So far, so good!

I am off to NY State for a two-day meeting, leaving this afternoon - it's about a 90-minute drive, so having the eye weight is a MUST as it keeps my eye so much more moist. I am traveling with the full complement of eye-care stuff - patches, drops, gels, eye wash, blinkeze kit, etc. I feel as if I am ready for just about anything! Now, all I have to do is get the steamer trunk in my car...

I'll be home again Tuesday night, so will post again then.

Thanks to all for your good wishes, and comments - I appreciate it so much!! Lorenzo, it's just about cocktail hour on the Continent, so hopefully you'll be hoisting an appropriate beverage. And, Kay, you should be poolside with the curly girls about now...

Ci Vediamo!

Friday, August 8, 2008

A Bump in the BlinkEze Road...

Just when you think everything is coming up roses in the post brain surgery world...

Late yesterday, my eyelid started to feel kind of sore, so I took the beloved BlinkEze off to take a loo, (and because it was time to change the adhesive.) Well, what do I find but swelling and redness on my eyelid! I tried to re-affix the weight, but it was just too uncomfortable so had to sleep with my eye patched again for the first time in 3 weeks.

This put me into a bit of a funk. I had a little pity-party for myself last night, but am already planning alternative options today. I am going leave the weight off today and tomorrow and try putting it back on on Sunday. We'll see if that works. If not, I am going to call the doctor and try to arrange for something called a "punctal plug" where they basically block the tear ducts on the lower lid as a way to retain moisture in the eye for longer periods. And, if that fails, I'll look into getting a surgically implanted "gold" eye weight.

Of course, there is always the chance that my eye will actually blink on its own one of these days, which would be the best option of all!

Meanwhile, I think that a nice piece of grilled salmon and a fresh grilled eggplant and tomato salad is in order... perhaps accompanied by a nice crisp glass of savignon blanc and followed by a piece of dark chocolate...

Tuesday, August 5, 2008

Back to Normal?

Someone asked me the other day when I would be "back to normal" ... and it gave me pause to think about that. What is normal, anyway? I realized that I probably needed to redefine "normal" for myself.

Will I get back to the way I was before this little Acoustic Neuroma adventure? No, I won't. I will always be deaf in one ear, and will probably always have some facial issues. I may (or may not) get tired a little easier than I did before, and I may occasionally have "wobbly" days when my balance isn't quite up to snuff. Is that depressing to me - definitely not! I don't look at this as not returning to normal; rather I look at it as having a new normal.

Sometimes life forces you to take a little time out - it is up to you what you do with that time out. For me, this was a good chance to re-examine my priorities and kind of "check-in" with myself to make sure I'm doing the right things. I have made some changes to my business as a result of this and am very excited about the changes. I have also become more selective about what I do in my "leisure" time - also good. And, I'm coming up with a list of upsides to facial paralysis! (Now, that is a bit of challenge, but I'm up to it!)

So those are my ruminations today from Tallyho Lane.

Lorenzo, the bottling will be sometime next year and you're invited! Jules, you too! And anyone else who wants to hang out in a vineyard for a few hours and swill down some wine.