Tuesday, November 25, 2008

Happy Thanksgiving

Two days until gluttony prevails ... only in America is it acceptable to have a holiday that is all about eating way more than we should! Well, in truth, if one gets back to the roots of the holiday, one can find many things to be thankful for ...

Meanwhile, back at the "ranch" ...

Phoebe isn't liking her antibiotics very much, but at least she is pretty easy to handle. I just pry open her little kitty lips and send a blast of liquid antibiotic zooming down her throat. Where upon she promptly vacates the area to fix her fur! Her tail is almost back to normal - did I mention that she did a half-gainer off the grandfather clock and bent her tail again?!

I saw my primary doc on Monday and he took a blood test so I will know by early next week whether I have the "fever" or not. He doesn't think I have it, and neither do I - but best to be safe and certain.

We are having a smallish gathering for Thanksgiving this year - only Willie's parents, sister, aunt Rosie and two cousins. I have surrendered to my new reality and have ordered pre-made food. Yes, I know my limits! Since Willie and I are leaving Friday morning for a getaway to the Connecticut shore, I don't want to be totally exhausted, so have decided to take the easy way out. Willie will cook the turkey (on the grill, of course) and everything else is coming pre-made, even the gravy! Aunt Rosie is bringing Italian pastries from Queens, so I know the meal will end very well indeed. There's not much in life that can't be improved by a good cannoli!

To all who may be reading this, I wish you a wonderful Thanksgiving, no matter what country you hail from!

Saturday, November 22, 2008

Cat Scratch Fever

So begins a new adventure. To back up a bit ... Took Phoebe to the vet Monday for regular check up. Vet said her gums were inflamed and took a a couple of blood tests (expensive ones, of course). Brought Phoebe home, Rocket took one sniff and launched a Jihad.

Fast forward to Friday ... Jihad still underway although losing momentum. Vet calls to say Phoebe has Bordatella, or Cat Scratch Disease (Fever). What, do you ask, is that? Well, I won't launch into the medical details, but it is basically a tic and flea born disease that attacks the immune system. And, while it is most commonly found in cats, it is transmittable to people who have auto-immune disease OR have recently had surgery .... (drum roll).

So the first order of business is to get Phoebe on a one-month course of antibiotics. She will be re-tested in six months to see if the bug has been eradicated.

I have an appointment with my PC doctor on Monday morning where I will find out what, if anything I need to do. I did, of course, go online to see if I could learn anything and basically it was mostly bad. Not "you're gonna die" bad, but still ugly. I'm going to stop reading and just wait to talk to the doctor Monday. Brain tumor aside, I'm really a pretty healthy person so I really don't think there is anything to worry about. AT the worst, maybe he'll put me on prophylactic antibiotics for a time. My thinking is that the month of IV antibiotics I had following the post surgical infection would have killed anything.

Well, never a dull moment on Tallyho Lane...

Thursday, November 20, 2008

Acoustic Neuroma Aftermath...

Has a catchy ring to it, doesn't it?

So the verdict on the punctal plug is two thumbs up. It is doing what I had hoped in that I don't have to put drops in as often. I still have to use the thick Celluvisc drops, but I knew that switching to a lighter drop was a long shot, so it's okay. Of course, this means I still can't really drive much at night because the thicker drops just cause too much blurriness and headlight glare. Oh well, I never much liked driving at night anyway - so there!

Glad so many of you can see so much progress in my face - the improvement in the last 5 weeks or so has been the most dramatic. I have a lot of movement in my whole cheek area now, as well as my upper lip. Lower lip is still dead, which has the net affect of pulling that corner of my mouth down a bit. Still, it's a smile I can be quite happy with - funny how you don't fully appreciate your own smile until you are suddenly without it.

I've noticed that my face still droops more noticeably when I am tired, which is also when I have a tendency to slur my words, dribble food, etc. Willie still has to remind me sometimes that something has escaped my mouth and is stuck to my lower lip or chin - what a charming picture. When I eat in public, I just make sure to wipe my lip/chin after each bite with my napkin - it's really the only way to make sure I am not wearing part of my meal on my face. Kind of funny when you can allow yourself to see the humor.

The weather for the last few days has been crisp and cold which seems to be very, very good for me. This is the first time in months that I haven't been in pretty constant pain - yahoo! I suspect that when the weather changes I'll start to get some of the pain back, but I can't begin to say how wonderful it has felt the last few days to not have noticeable pain. It just makes a huge difference.

I'll post more later about the latest feline jihad and about my "Fitover" glasses ...

Friday, November 14, 2008

Punctal Plug

Friday afternoon in acoustic neuroma land...

I just returned from the ophthalmologist's office where he inserted a "punctal plug" in my lower right tear duct. As the name suggests, it is a very tiny "plug" that is inserted using a tiny instrument into the tear duct. I will prevent any moisture that is in my eye from draining through the tear duct. The plug appears to be about the size of a grain of sand - if it ever falls out, I'll never know...

As you know, part of the acoustic neuroma aftermath is that my eye doesn't close all the way and it doesn't produce any tears. So, I have to constantly keep drops or gel lubricant in my eye in order to protect the cornea. Sometimes, I find myself using drops every 15 minutes or so, which is a pain in the ass. Or, the eye, in my case. With this plug, I should be able to double the time between drops.

I thought it would be worthwhile to post a couple of pictures here. One is a "close up" of my eyes - as you can see, my right eye is almost, but not quite, closed. That little slit is enough that I lose quite a bit of moisture from my eye due to evaporation. Also, what moisture I do have doesn't always get disbursed about the whole because my blink doesn't work well or consistently. Hence the drops and punctal plug. You can also see from this picture that my eyebrow still doesn't move - at all. The upside is that I have no lines on that side of my forehead. Since I wear bangs now, most people won't ever see the crooked eye brows, although they will see the "Marty Feldman" eye, especially when I'm tired!

I also thought it was time for a smile update. As you can see, when I make a small smile, it looks quite symmetrical. The big smile is still somewhat asymmetrical, but definitely better than it was. I'm working myself up to a separate post about facial issues, because there are so many elements to it that aren't as overtly visible, but are still annoying and daunting.

Today, though, the eyes have it...

Tuesday, November 11, 2008

Pardon Me?

So, thanks first to my "tumour buddies" for your unfailing support and understanding. I was talking with Wendy (another tumour buddy) this morning on the phone and we had some good laughs about our weird new world.

So, today I am going to vent about SSD - or, for those who aren't in our club, Single Side Deafness.

I think that the thing to stress here is DEAF, not hard-0f-hearing. It seems to be very hard for a lot of people to understand that I don't hear a single thing from my deaf ear. So, talking louder doesn't necessarily help. What DOES help is remembering to talk into my hearing ear, which is my Left ear.

To complicate the total absence of sound coming from my right side is an intensity of sound coming from my left side. I am told that the sound hypersensitivity will go away or at least diminish in time, but right now I still find a lot of loud noises to be acutely painful. So, when people shout, it really isn't a good thing and I still can't hear you because at that point, I've slapped my hand over my left ear to protect it.

Another thing that people don't seem to really understand is that I can't hear when multiple people are talking all at the same time - really, I can't hear you. All I hear is a lot of noise all fighting to enter my over-worked left ear. And, if you add some background noise onto this (air conditioner, radio, forced-air heat) it gets even harder.

Conversely, when I am engaged in a conversation with one other person, or multiple people who don't insist on talking over each other, I can hear just fine and you don't even need to raise your voice.

When I am at home, I can hear pretty much as well as I ever did. What I can't do is tell where sound is coming from. When a phone rings, I can't tell what room it is coming from. A crash in the middle of the night? No clue as to where it originated. And, sometimes, I don't really recognize sounds - I am constantly asking Willie "What was that?"

In noisy environments, I just can't hear - period. And, that is very unnerving and exhausting. I find myself not wanting to go out to dinner as often because sometimes it just isn't enjoyable at all because it is such a struggle to hear. And, yes, that makes me feel very aggravated at times - I don't like not being able to participate in conversations at the same level I used to. However, there are some bright spots. Recently I was out in a very noisy NYC restaurant with my friend Kura who carefully leaned forward over the table every time she spoke to me - which meant that I could actually hear her. It was an amazingly thoughtful gesture and is just one of the reasons why she's such a very dear friend. Love you, Missy!

I am looking into some sort of bone conduction device (either BAHA or TransEar) but I am also fully aware that it won't solve all of these issues. However, it would go a long way to minimizing the problem of people talking into my deaf ear. The other option is to just stay home all the time and while some days that is very tempting, it isn't a good long term solution.

I am trying to take some pages from my Dad's book. He has been SSD for years and most people would never even know it. He is my hero when it comes to seeing how gracefully someone can get through challenging SSD situation. And, like so many of my tumour buddies, he also knows how crummy it feels sometimes to not be able to hear. Thanks, Dad.

On a bright note, when I sleep on my left ear (which I usually do because it hurts to sleep on my incision side) I really can't hear a thing. This means that I pretty much sleep undisturbed through the night.

Thanks for letting me vent.

Sunday, November 9, 2008

Poopy Days

I've been going through a rough patch the last few weeks and I've been trying to pinpoint exactly why it has been rough. What I've come up with is that I probably haven't done an excellent job of accepting that some of what I go through on a daily basis may very well be permanent. Yes, intellectually I knew that I was deaf in one ear, and that my balance might not get completely back to "normal" and that my face would take up to several years to get wherever it's going. But, I don't think I necessarily understood the emotional implications of some of that. So, I am going to take the next couple of blog posts to try to "talk it out."

I can't promise that this will be very entertaining, but it will hopefully help me sort through things. Read if you want, comment if you feel so inclined.

I think I'll talk first about balance. I fell twice this week. In both cases, I know what happened but it was still startling to find myself on the ground. Most of what I've read suggests that I am at the point where my brain should have adjusted about as well to the disequilibrium as it's going to. And, I don't have anywhere near the balance challenges that many do following this surgery. What seems to happen to me is that if I move too quickly, for example get up out of chair and take a step all at the same time, my brain just can't keep up with my body and I end up having to catch myself. Likewise, if I bend over too quickly, down I go.

It's a little embarrassing to stumble in public and I need to get over that. And, I am going to need to change the way I move sometimes. I have always moved at a very fast speed (just ask my ever-patient husband who has been telling me to "slow down" for years) and it is going to take me some time to adjust my speed to my capability. And, that pisses me off. Yep, I admit it - I am feeling angry.

The first time I fell this week was last weekend, when Willie was away racing. I was going down the driveway to check the mail, heard a noise and quickly swiveled around to see if I could tell what the noise was and where it might be coming from. Bad move. I did the normal Acoustic Neuroma stagger, stepped into the lawn and completely lost my balance and went down. I certainly wasn't hurt, but in that moment when I knew I was falling, I was scared. I had that quick flash of thinking, what if I hurt myself, who will find me, will I lay here the rest of the weekend, etc. A simple thing like walking shouldn't be frightening.

The next time I fell, I was rushing around the house, as usual, saw something on the ground, bent over and ended up on my hand and knees on the floor. Anyone reading this who's had balance problems will totally relate to this. Most of the time, I can find some humor in it, but this week it hasn't felt all that funny to me.

I hate staggering in public. It makes me feel like I need to explain myself, and that would entail getting into some big long diatribe about why I am staggering which I just don't want to do. And, I am at the point where I really don't know if I am going to get much better which means I have to deal with this. Grrr.

Walking in the dark is a whole other challenge. I now have a route mapped out to get to and from the bathroom at night - it involves never being more than a foot from a wall or some other very stable object that I can hang onto. Turns out that when you no longer have a vestibular nerve, your brain relies much more heavily on vision to keep the body balanced. Not surprisingly, when you can't see, you are much more likely to tip over. Gee, isn't this fun?

The bright spot is that I suspect that if I can ever stop using so much gel and stuff in my right eye my balance may improve a bit too. The reality is that I can't really see much from my right eye most of the time, which makes it harder to balance. More on that later.

Well, this is probably a good place to stop. To those who are still reading, thanks for letting me rant.

Tuesday, November 4, 2008

Musings of a Muddled Brain

I have just finished doing my series of facial exercises, and put a fresh batch of drops in my eye. Pretty exciting life I lead! Actually, I also had a couple of meetings today as well as some client calls. I'm going to throw together a nice winter soup with ham, black eyed peas, and kale which will be accompanied by something red.

It is hard to believe that it is already November and before you can blink, we'll be pulling the turkey off the grill and gathering around the table to give Thanks. And, then, before you know it, we'll be out chopping down a Christmas tree. And, that can only mean that in January, I'll turn 53. And, then, I'll be getting ready for my one-year MRI! Good grief!

Well, back to today and the soup. I am thinking a pinch of fresh rosemary (last week's early and unexpected snow didn't get it!) would be just the thing for the soup. Perhaps I'll totter out there and get some. Now that we are not longer on Daylight Savings, it is dark by 5 pm, which sucks.

Now, here's an interesting question that my parents and I were debating over the weekend. Why does Alaska (my birth-state) need to go on Daylight Savings??? They have, like 22 hours of daylight a day during the summer months - WHY do they need to save it???? Can someone explain that to me???

Well, tomorrow morning when we awake in the US, we will (barring any hanging chads or dangling bills or whatever) have a new President-elect. I find it all quite exciting - like many here, I think I'm ready for a change. I drove one of my neighbors to the vote this morning (no, there was no voting-coercion going on!)

Tomorrow will be a new day....