Debbi Bifulco Update

[Debbi]

Glad my bonnet meets with approval - I'm just trying to do my part!

Here's what I just posted to my blog about today's events and adventures (sorry for not having fresh material, next time...)

A Red Banner Day!!

We were up at the crack of dawn and on the road to NYC by 7:30 AM - in the rain. We being me, Willie, mom and dad. Took us a couple of hours to get in, but the really cool thing was that I experienced ZERO (zip, nada) dizziness or disequilibrium (one of my fancy new words - like it?) during the drip!

Got to the hospital parking lot, where the attendant directed us about halfway down the ramp. (Stay with me on this - I'm about to make a pointl...) I launch myself from the car with gusto - right up until I by brain realizes that I am NOT on a flat surface - eek! I grabbed the car and mom until I could get my wits about me, then proceeded with extreme caution up the ramp and into the hospital front doors (with my armed guard protecting my flanks.) I'm sure it was quite a site.

We were a little early, so stopped at the Starbucks kiosk for a coffee - my first public event, complete with lots of ambient noise (the enemy of my people, the Single Side Deafies.) All systems go, although I will caution myself against ordering hot beverages in public again for awhile. Apparently the numbess in my mouth causes me not to realize something is hot until it reaches my throat - well, you can imagine how that turns out.

Off to the Surgeons office to be "de-sutured." He was very pleased with his work - and with my progress. Stitches (both head and belly) came out without a problem. I had armed Willie with a list of questions, so while the sutures were flying out, the questions were flying equally fast. Good thing Dr. Roland is a brain surgeon and able to multi-task with aplomb. The hightlights - because I am not having the balance issues that everyone expected, I have the green light to try a short driving expedition this weekend (Willie will be sitting beside me, fully clenched and ready to pounce.) Dr. R also feels like my face may resolve sooner than the expected 5 months or so. He will see me again in about 3 weeks for an assessment and will refer me to a facial physical therapist as needed at that time. Numerous other little things, but all positive!

The next big accomplishment of the day (see, I told you this was a Red Banner Day, didn't I?) was lunch IN PUBLIC! We went to IHOP (yes, Willie's favorite) where I selected the multi grain pancakes as being the safest option. Good choice, as I was able to get them into small bites with no mishaps along the way - only disappointment was that all of the syrup tasted weird to me (I think maybe the tongue numbness is affecting how I taste sweet things...) There was a big group sitting right next to us for awhile that was VERY noisy, so I got to experience that aspect of SSD for the first time. Didn't much like it. It is SO hard to hear when there is background noise. However, I'll give it some time to see if it gets easier - and in the meantime, I'm sure I'll drive everyone crazy saying "what?" all the time. sigh.

Once home, it was time for a little nap - up and feeling ready for almost anything now (okay, that's probably a slight exageration, but I do feel pretty darned good!)

Debbi - stitchless in NJ and sneaking up on the car...

[Jim Scott]

Hi, Debbi:

Thanks for the latest update....and it's a good one!  Getting the stiches removed is always a relief and your doctor was very encouraging. 

Overall, you seem to be doing very well and so, once again, congratulations are in order! 

Your recovery sounds similar to mine.  Eating out for the first time (I did this on my release from the hospital.  I had pancakes, too) and driving were big milestones for me, as they are for all post-op AN patients.  The SSD takes getting used to - but you will.  I say 'What?' a lot and no one seems to mind that much.  Of course, there is always the possibility of a BAHA or TransEar if you feel you need some help with hearing.  Many do. 

I expect to read of many more 'accomplishments' for you as the days roll by, Debbi.  Your positive, 'can-do' attitude is obviously helping you, as it usually does those who have no serious post-op complications and are eager for recovery (Jim raises his hand).  Keep it up!  We really appreciate the running account of your recovery.  It's both informative and inspirational.  Thanks again. 

Jim

[cmp]

So glad your recovery is proceeding smoothly and VERY speedily, Debbi. And you are definitely quite the fashionista in your bonnet--avant garde milliner Philip Treacy could learn a thing or two from you!

It's interesting to see the changes in the procedure/followup since my surgery long ago... I didn't realize that the belly-fat/titanium mesh plug is pretty much standard procedure now, and that I'll be getting it myself (I just had my preadmission appt and final consult with Dr Martuza this week, and in reviewing my latest MRI, noticed for the first time that the base of my skull has a big old scoop taken out of it!).

And it's wonderful to hear that now there are designated facial physical therapists--I felt like quite the pioneer when I went off to work with Jackie Diehls and Richard Balliet, well before "facial reanimation" became an established field.

Most wonderful of all, of course, is that your face is expected to resolve in less than the expected time. Hooray! I'm sure you'll appreciate that tremendously.

[leapyrtwins]

Debbi -

I kind of like reading what's on your blog on the forum, it saves me time since I don't have to look in both places 

Congratulations on being stitchless and on getting the okay to start driving.  It sounds like you are recovering very nicely.

I really like "disequalibrium" - if it's not already a word, it should be!  It's right up there with "wonkyhead" 

We'll have to create a dictionary just for AN patients.  Let's get Lori on that one; she's always open to new ideas 

Jan

[wendysig]

Debbi -

I'm so glad for you that you seem to be doing so well!  Fantastic sense of humor too I must say!!  I know it's important to keep a sense of humor,and like everything else I've noticed about you, you are just an amazing person.  I guess if we can't laugh at ourselves, who can we laugh at?  Hope your recovery continues to go as smoothly.

Wendy

[lori67]

Lori's to do list....

 Write the first ever AN Dictionary... including, but not limited to the following AN related words.... disequalibrium, wonkyhead, fat-head, metal-head, BAHA, TransEar, SSD, eye goop, eye goop removal procedures, forumite, postie, pirate socks, pick-a-weinie dogs...

With a special section on AN fashion trends..."Which AN headwear is right for which season?", "Eye Patches:  Not just for pirates anymore" and "How to accessorize your hearing aid".

Maybe some restaurant pointers:  "No soup for you!", "Corn on the cob?  Why don't you give peas a chance instead?"

And of course, the all important "Thank you to Jan, without whom I might not have thought of this undertaking..."  (I guess that means I'll have to share the profits..)

[leapyrtwins]

And of course, the all important "Thank you to Jan, without whom I might not have thought of this undertaking..."  (I guess that means I'll have to share the profits..)

Well, that was a given, you know I'd do the same for you 

Afterall, we are fellow forumites.  I just LOVE that word 

Jan

PS - don't forget the section on the ever-popular garage surgery - complete with rolling gurneys

[Debbi]

Love the book idea!  Let's see if we can't come up with a few more catch-phrases and maybe even a secret handshake! 

Did we get Bobbly-head?

Debbi

[marymomof3]

Debbi!  I'm so glad to hear you're doing so well.  Getting your stitches out is a huge milestone.  It's only up from here!
Mary

[calimama]

Debbi,

Don't forget to add "drip" to the list of words. I guess this is kind of like a 'trip' but without 'disequilibrium'?   

Note to self: watch out for NJ license plates!   

All fun aside, glad you are doing so well and spreading your message of hope with all of us awaiting our big day.  Keep up the great work!

Trish

[Mama R]

SO glad to hear about your moving progress..I bet you feel really blessed to be doing so well. I know I do.

GREAT BONNET!! I love the animal theme an Dark Lord replica. I recived  a teddy bear which we named 'Charlie' and a cat with we named 'Calico'. If you get a chance and would like to chuckle go to 'You Tube' and key in 'Charlie Bit Me'.. It is the cutest video of two young ornary British boys who ..well..once you play it you will know how the title became 'Charlie Bit Me'. Needless to say soon after ICU and plenty of
drugs my 'Charlie' and 'Calico' went at it imitating this You Tube video. It is amazing what humor & positive attitude comes upon one who is just so relieved to be a 'postie' ...It appears as if you are too! CONGRATULATIONS, Debbi!

Hopefully this will get you to 'Charlie Bit Me'  http://www.youtube.com/watch?v=_OBlgSz8sSM (WARNING: Some Remix's r inappropriate)

[Debbi]

Hey, that is one funny video!  I was laughing out loud.  And, I can imagine the drug-induced hospital games with this, too - ah to have a sense of humor!

I really do find that finding humor helps me feel better about each day.  There are certainly plenty of things that I could get upset about, or feel sorry for myself about - but if I can just see humor in it all, I know I'll be all right.  Besides, if I laugh first, it gives other people permission to laugh, too, and not feel as if they are laughing AT me.  Does that make sense?

My milestone (and laugh) for today was taking about a 1/3 mile walk on our road.  (that would me the milestone part).  The laugh was as I was strolling along, I realized that I was listing rapidly towards the middle of the road, rather like a drunken pirate!  Mom and I had a good laugh and got me back to the side of the road. 

Tomorrow I am tackling the car!! Yep, stay off the roads in NJ while I'm out - could be dangerous!  Actually, I am going to venture out on our quiet street fiirst, then if I am feeling confident, I'm going to venture down to the local flower/produce stand.  Stay tuned...

Debbi (revving the engines)

[MaryBKAriz]

Debbi,

Sounds like your engine is doing well so I guess that means things are going well under the bonnet! Sorry, hubby likes British cars...had to do the pun.

I DO like the animal print on your fancy bonnet!

You go girl!!!!!!!!

Mary

[LADavid]

I would definitely add bobble-head and fog-head to that list.  Very slowly it does go away.  I remember taking one of my first steps out side the hospital when there wasn't a step to take.  I landed on the hood of a parked car.  Drunken pirate pretty much sums up this whole experience.  Only drunk with out the happy part of it.

[jerseygirl]

Debbi,

What a wonderful progress! Keep it up! Thank you for documenting it.

                         Eve