Debbi Bifulco Update

[wendysig]

Debbi -
You look fantastic!  If this is how you look when you're face is drooping, you must look very close to your old self when you're not tired.  I see definite leaps ofimprovement from previous pictures.  Good for you for pushing yourself.  Doing something uncomortable every day sounds like the fast track back to normalcy (whatever that is).  Just don't forget not to push yourself too hard.  You deserve a break every now and then. 

Jan -  Even though I told my ENT off, I did it politely.  I agree with the need to thank those who deserve thanking.  I sent a note to my internist and most of the doctors I saw for an opinion.  I know this wasn't necessary, but not knowing who I would end up with, it seemed like a good way for them to remember me in a positive way if I went back to them for treatment.

Wendy

[leapyrtwins]

Wendy -

I'm glad you were polite.  I find that being polite when I tell someone off helps me keep my composure.  Plus it's easier to get my point across when I'm not so angry.  And in addition, I come across much more rational that way

Not that I go around constantly telling people off, but sometimes the situation warrants it.  In fact, rather than referring to it as "telling someone off", I guess it would be more accurate to call it constructive criticism.

Jan

[Debbi]

Thanks, Jan, Wendy, Eve and Kay - I confess to feeling pretty vulnerable putting that picture up!  I miss my smile so much and it is wierd to see a picture of myself without a smile.  However, it is good to get positive feedback and I thank you all.  Must keep reminding myself that progress is measured in milimeters, or maybe micro-milimeters!

Debbi

[leapyrtwins]

Debbi -

IMO, posting pictures is something that makes all of us feel a little vulnerable.  Afterall, not everyone I know gets to see what's under my hair 

But, by the same token, I think it's extremely important to post them. 

Thank again for posting yours,

Jan

[cmp]

debbi--

Wow, you look FABULOUS! Just lovely, and so close to "normal" (in spite of everything you've been through lately...) that someone who didn't know the history couldn't even begin to suspect it... I hope the tremendous progress you've made on this front offsets some of the less pleasant stuff you've been having to endure lately...

About arrogant opthalmologists: I think there may be a special degree they offer in that! When I realized I needed help and my first, do-nothing eye doctor wasn't going to provide it, I booked a consult with a "big name" at OSU hospital (we were living in Ohio at the time). I explained that my eye was constantly dry and irritated, that I'd had frequent bouts of keratitis and a corneal abrasion, and told him how I'd been caring for it (ointment 24/7 at that point, sunglasses and/or eyepatch outdoors, etc). His glib response was "Well, we could always extend that tarsorraphy and sew it shut if you want" (implying I should just get used to it, I guess?)

Needless to say, I kept looking...

Carrie

[wendysig]

Carrie,
All I can say is Wow!  How unfeeling and unpleasant.  Now there is a doctor I would have sent a letter to and not been polite at all.  What a jerk!!!  I hope you found someone you liked a lot better and who actually cared about what you were going through.

Debbi -
I have to say that I find your openness in your blog and the pictures you post are both incredibly brave acts.  I can't even figure out how to post a picture, let alone deciding if I'll be brave enough to follow in your shoes (just how big are your feet anyway, probably smaller than mine --  91/2 -10).  I hope you realize how much people(especially me) appreciate your selflessness.

Wendy

[MaryBKAriz]

Wendy,

I were 9 1/2 - 10 so if you follow in m y footsteps, the shoes will fit! 

[Jim Scott]

Wendy/all:

I just wanted to pop in and comment that I haven't had to deal with any arrogant doctors - because I simply won't tolerate them.  If a doctor treats me dismissively or acts if he has something more important to do when I'm talking to him, I never go back.  My wife, who has to see a lot of doctors, is even more adamant than I am about not tolerating rude or condescending attitudes from doctors.  We've had the same Primary Care Physician for well over 20 years.  He's a great guy and always very helpful.  He's the doctor that originally sent me for the MRI when I presented with my symptoms.  He called me that night with the news: "Well Jim, you have an Acoustic Neuroma"  I replied, trying to sound intelligent: "what is an Acoustic Neuroma, anyway?"  I found out.  He also informed that I would need surgery because it was too large for radiation.  That was a tough call - for both of us. 

The first neurosurgeon I consulted (on my primary care physician's recommendation) was unnecessarily aloof, seemed disinterested in my case and worse yet, was evasive when I pressed him to tell me how many AN surgeries he had performed.  He  finally said that he had done 'about 60'.  See Ya!  Fortunately, my wife's neurosurgeon (he didn't do skull surgery, he's a spinal guy) recommended the doctor (in his practice) that I ended up selecting.  This surgeon is first-rank but humble, unwaveringly polite and is truly caring and compassionate.  I'm one of his 'star' AN patients (he claims) and he always acts delighted to see me.  The feeling is mutual. 

Jan:

I loved it when you posted about getting your money back!  My wife loved that one, too.  It's something she would do.

Debbi: 

If that is really your 'droopy' look, you probably won't need too long to have your facial symmetry restored.  Thanks for posting that photo.  I know it is a challenge for you and that you feel vulnerable but it should help your confidence level to know that you're accepted even if you're not 'perfect' (who is?)  Bravo to you!

Jim

[yardtick]

Debbi,

I think you look beautiful.  Just think about all that you have been through these past few weeks.  I can look worst than you when I'm tired and I haven't had my nerve graft yet.  Remember I have a facial neuroma that was debulked almost 2yrs ago.  For me mornings, evenings, killer headaches and a low weather pressure causes the left side of my face some grief  

You go girl, keep up the good fight!  Your story, is amazing.   Please continue to post your recovery, it gives many of us hope.

Anne Marie     

[Debbi]

First of all, can I just say THANK YOU so much!  Every time I look at my face in the mirror, all I see is the wild eye and the down-tilting mouth.  Realistically, I do know that my face has improved from those first early days, but the progress is painfully slow to an impatient, instant gratification kind of gal like me.  Yep, I know a bunch of you can relate to THAT! 

So, hearing from all of you that I look okay is really wonderful.  I often wonder, when I venture out, what people think when they see my face - Willie keeps telling me that most people who don't know me wouldn't necessarily spot that anything is wrong.  Of course, he's my husband and he loves me, so he may be biased! 

The down side of forcing myself to get out more, and to push outside of my comfort zones means that there are moe times when I feel extremely vulnerable and insecure in my environment.  It's a strange feeling for me, and I take huge comfort from knowing that you guys all know what this is like.  So, thank you SO much!

Now, a confession to make - today I didn't do anything other than a few hours of work (safely on my phone in my office). Other than taking the dog out for a couple of quick piddle breaks, I didn't venture out at all.  So, tomorrow I am going to make up for it.  I am having lunch with a professional colleague of mine whom I haven't seen since pre-surgery AND I am going to the bank and the grocery store.  You guys have all given me much encouragement today - I shall go forth and conquer!!!

On the subject of arrogant doctors - I'm with you, Jim!  I've fired more doctors than I can count - basically, if they won't take time to answer my questions in a thoughtful, non-condescending way, they're ... out!  I was more tolerant when I was younger, but now, I insist on better care for myself and my family.  Kind of funny - my Italian family on my husband's side was of the school of thought that you never question your doctors - when I married into the family 8 years ago, their world started to tilt on its axis.  I've successfully gotten several doctors fired!!  Including one who was so patronizing to my mother in law that I nearly slapped him myself!  Some doctors shouldn't take on geriatric patients - period.

Okay, enough of my rant - guess this doctor thing hit a nerve.  all that being said, I love my doctors now!

Okay, on to the nightly infustion - my lemon IV awaits me...

Debbi

[lori67]

Debbi -

You really do look great.  Trust me - I look much worse than that - and I go out in public.

I do remember when I was first adjusting to my new look, I hated to go anywhere because I was so self-conscious, but I finally realized that my family doesn't care what I look like and doesn't even notice the changes anymore, my friends don't care and most people I'd want to have any interaction with don't care.  I do get some funny looks and stares every now and then, but I've noticed that there are a lot more nice people out there who would rather have a nice conversation than just stare at me.

You do look great and I'm sure other people would not notice anything different if you didn't tell them.  Thanks for posting the pictures - as you can see, I haven't been brave enough to post a post-op picture of myself yet.... 

Lori

[Kaybo]

Debbi~
Good Luck tomorrow - go get 'em Tiger!  You'll do great!  By golly, you conquered brain surgery...you have a right to look funny & have something to show for what you have overcome (even if that is really NOT what you want...)!!  Trust me when I say you look great -- I have looked a LOT worse for 12 years and I have been EVERYWHERE...well, not everywhere, but anywhere I wanted to go (& some of those places were with my in-laws -- pretty smancy!!).  Good luck!   

K

[wendysig]

Debbi -
Glad you are feeling better about everything.  Good luck tomorrow.  You are the best!

Wendy

[Tamara]

Just a suggestion - if anyone stares, try to smile at them and think the best thoughts possible.  By that, I mean, think to yourself, "Maybe that person has a friend who has an AN, and is wondering if I did.." or something like that.  I know I've mentioned that my daughter is severely disabled.  We are out in public constantly, and on the (actually rare) occasion that someone stares, I just think similar thoughts.  I'm actually guilty myself of staring when I see a child that resembles my daughter, so I've been on both sides.  If a child stares, I will sometimes ask, "Are you wondering about my daughter?", and then give them a brief explanation: "Her brain doesn't work right, and she can't talk, but she'll like it if you talk to her".  For the AN stares, especially from children, I'd try to educate.  Otherwise, just smile, and happy thoughts.

Smiling with happy thoughts,
Tamara

[Kaybo]

Tamara~
Great points - some I wish I would've remembered (but I was so tired when I responded!).  I do the same thing - in both instances!  I have stared before when I was just wondering what was wrong (this was a few months after surgery) and my hubby really got on to me.  He said that of all people I should not stare b/c I know how it feels - I answered right back that of all people, I had a right to stare b/c I had been stared at so much (I think this was while my eye was sewn shut or right after)!!!!  No, I really did need that reminder but I was curious!  I taught 1st grade when I had my surgery and then 3rd a couple of years after that - I always told my parents at Open House (my 1 time all year to REALLY get to talk to them) that they might not agree with me, but I had told their children that it was OK to ask someone what happened when they want to stare.  I told them that 99% of the people are like me and don't mind telling them and the other 1% would probably say that they would rather not talk about it (& that is OK too).  My students (& my girlies) talked very open & at length about my whole surgery experience.  I hope that they came away from my class with a LOT more than just reading and writing - I nearly KNOW they did!!     I taught them theat it doesn't matter what you look like on the outside, it is what is on the inside that matters and even if you look "different," you can still do what others can do (even if you have to make little adjustments sometimes)I always try to educate people where ever I am if they look curious - my explanation is defferent depending on the age of the person I am talking to.
Have a great day!

K