Debbi Bifulco Update

[Debbi]

Good morning all-

Yep, its going to be a hot, sticky day in New Jersy.  I was hoping to do a little gardening, but I think I'll wait - no sense getting all sweaty, especially when I have to plastic wrap myself before showering!   

Tamara, that's a very interesting link!  I don't know if NYU did give any antibiotics at time of surgery - this would definitely be something I'd ask in the future.  Hopefully some of the folks who are waiting surgery will see this and ask.  As big of an issue as infections are now, I would think that hospitals would do a better job on this.

The docs never really got a good culture on my infection, so unable to say how it started - but what has been mentioned several times is hair follicles.  Isn't that weird?

Wendy - stop scratching!!

Jan, how's the BAHA today?

Lori, any new business ventures for Wendy to invest in?   

Mary, how're YOU doing?

Kay, stilll flashing that gorgeous smile of yours?

Ah, well, off to the opthamologist to see if there's anything else I can do for my non-tearing eye.  Problaby nothing, but figured I should really add one more doctor to the list...   

Debbi - trying to make my face move...

[lori67]

Debbi -

It's good to use that economic stimulus check on various doctors, isn't it?  Besides, the eye doctor is probably ready for a tune up on his Ferrari anyway.  Nice of you to finance that for him!   

It's HOT and sticky here in Nashville today too.  I think I'll be spending the day in my kid's little plastic pool.  It won't be pretty but, hey, desperate times call for desperate measures.  It'll give me an opportunity to come up with some more money-making schemes.. maybe it would be a good idea to come up with one that actually makes money for a change...

Can any of you Canadians send down some cooler air for us?

Lori

[Kaybo]

Lori~
It is supposed to be 96 and gusts up 45 mph!!

K

[wendysig]

Debbi -
Back from the doctor.  He actually had the nerve to laugh at me and told me it was just an allergic reaction and to take some Benedryl and use hydracortisone cream  I already knew I'm allergic to bee stings so now I can add mosquitos to the list.  The fun never ends!  My hand is about 1 1/2 its usual size, red and tichy.  That's why I thoughtit might be an infection.  Thank goodness its not.  Have fun gardening and drink lots of water if you're staying outside.  Now that I know I'm okay, we're going to the pool.  See you later.  Hope you have a great day!

Wendy

[yardtick]

Lori,

In the Southern Ont today temperatures reached a high of 34 Celsius, with a humidex of 42.  That's dam hot!!  My central air has been on since yesterday at lunch.  You would have to go into the Territories to avoid these hot, hazy and humid temperatures.  No igloos around here.

Anne Marie

[wendysig]

Debbi -
What did the optahmologist say?  Did he have any ideas for you?  Let me know how the fcial PT is going too.  I' hoping you'll be flashing that barely noticable assymetrical smile soon.

Wendy

[leapyrtwins]

Haven't worn my BAHA today as it's hot and sticky here too.  When I was outside I was doing yard work and I figured I was too sweaty to wear it; when I was inside there really wasn't much I needed more than one ear to hear 

The humidity is horrible and we have been having thunderstorms for about the third day in a row and there is no relief in sight until the middle of next week.  IMO it's just too hot for early June.  I hate having to turn the A/C on so early - though I'm confident that the electric company is just thrilled 

I wish I had a great excuse to sit in a plastic kiddie pool - Lori can you spare your kids for a while?

Debbi -

your doctor has a Ferrari    Boy, doctors with fancy cars, doctors with private islands!  I'm beginning to see where I went wrong in life LOL

Jan

[Debbi]

HI All-

Sounds like we are all in sticky, hot hell this weekend.  It's too hot to do anythign outside - I don't want the area around my picc line to get all sweaty - I'm sure that's NOT sanitary! 

I didn't much like the opthamologist yesterday - thoguht he was arrogant and he didn't listen to what I was saying.  However, he did say that I am doing the right things with the various drops and gels, and that my cornea is fine.  No need to see him again unless I have problems - or if this doesn't eventually resolve in which case I'll want to investigate gold weight.

I ventured into a Model's after the doctor, and for some reason it ended up being one of those experiences that made me feel very insecure.  I think it was probably the noise, and the fact that I didn't know my way around the store.  When a sales person aslked if he could help me, I couldn't hear him - and then when I was standing in line to pay, I didn't hear the cashier call "next".  Ugh - this is the part of SSD that isn't much fun.  I almost raced out to my car and just sat there for about 5 mnutes collecting my emotions. 

I spent the rest of the day "hiding" in the house.  I guess I was due for a bad, "feel sorry for yourself" day ...  Today, however, is a new day.  I am finishing my morning IV and then plan to tackle the task of showering (after first wrapping myself in plastic wrap, eye patch, etc) then off to the grocery store to pick up a couple of things for dinner.  No pouting allowed today.

Debbi - trying not to sweat on my PICC line

[wendysig]

Hi Debbi
I guess we all have  a day here and there where we can feel sorry for ourselves for a little while. It sounds like yesterday was one of yours and you had every right to feel at least as sorry for yourselft as you did.  I can't imagine going what you have and not giving in to the blues some  of the time.  You're a strong person, but you're only human.  That opthamologist sounds like someone should put him in his place.  I hate arrogant doctors.  My ENT was and is  kind of arrogant.  Do you remember when I told you I can leave things that bother me alone.  I tried talking to this guy like a normal person when I was seeing him.  Although he was professional and is good at what he does, I did not like the way he talked down to me or the look he would occasionally give me if I disagreed with him.  Well, I sent him a letter the other day and you know first hand what kind of letters I can send.  This time I was not half crazed and on prednisone.  I meant what I said.  I basically told him what a good doctor I thought he was and that while I very much appreciated how quickly he diagnosed my problem, he needs to work on his people skills.  I wish I could have been a fly on the wall when he read it.  My internist already knows that I sent the letter (he actually thought it was funny) because I gave him a heads up since he and the ENT are friends.  He knows how arrogant this guy can be.  Maybe you should do that, I know it made me feel better!  Hope today brings happier things.

Wendy

[lori67]

I guess it's hot and sticky everywhere these days.... ugh..looks like another day in the kids pool.  I will, however, be generous enough to ship them and the pool to Jan and just remain in a quiet, air conditioned house while Jan is trying to squeeze 4 kids and herself into the water.  It does have a little slide and a cup holder, so you can put down your margarita while sliding - they think of everything.

Debbi - sorry to hear the eye doctor thing wasn't as pleasant as you would have hoped.  Some of the best doctors have the worst people skills.  They should have to pass "Bedside Manner 101" in school before they can graduate.  On the bright side, at least your eye is in good shape and hopefully will stay that way.

Stay cool everyone!!
Lori

[leapyrtwins]

I don't know where to start -  guess since this is Debbi's topic I'll pick her first - yes, "mom" is playing favorites again   

Debbi -

I am sorry to hear about the arrogant doctor.  Amazingly enough, I don't have any arrogant doctors who come to mind.  I thought my neurosurgeon would be extremely arrogant because he is a "big shot" and has a huge reputation, but I couldn't have picked a more down to earth, reassuring man.  He is definitely confident, but not at all cocky like I expected.  My neurotologist is a nice guy too and he knows his stuff, but I find he can be very business like and serious - which, while being very commendable for a doctor - sometimes hits me the wrong way.  I have to give him tremendous credit though; he has recognized that I like humor and he makes it a point to include some in his communications with me.

I am thrilled to hear that despite the fact your doc was arrogant, and a non-listener, your eye is doing well.  I'm hoping you won't have to go the eye weight route, but if you do, I know you'll keep the same positive attitude you usually have and things will be fine.  Don't feel bad about your "bad" day.  IMO we all have our grumpy days and we are all entitled to them.  The weather isn't helping either - I know it's giving me a bad attitude 

Wendy -

the letter to the doctor.  Sounds like something I would do.  There's a large part of me that wants to change my bad experiences into positive ones for others.

I once wrote a doctor a letter and asked for my money back - and got it.  I had made an appointment with him for a second opinion - or maybe it was a third - and had taken the time to forward a copy of my medical records; and trust me, it was a very large file.  When I got to the appointment, I found out he had never even looked at my records and our appointment was basically him asking me what I thought I should do    I told the doctor who had given me the first opinion about my letter and my refund and he got a huge chuckle out of it    I'm anxious to see if your ENT mentions the letter to your internist.  Keep us posted.

I also have to add here, that I although I am quick to rock the boat when I feel it needs rocking - I am also quick to offer praise and thank yous.  I wrote thank you letters to all my divorce attorneys and also to all the doctors involved in my AN surgery - and I mean personal thank you notes (not the Hallmark ones).  Yes, these people all got paid, and they were just doing their jobs - but IMO they did their jobs wonderfully and it was the least I could do to thank them all.

Lori -

I was unaware you had the "deluxe" model kiddie pool and I am SO excited that it has not only a slide, but a cup holder.  I will trade you my air-conditioned house anytime - as long as you agree to pay ComEd for that high-priced service.  PM me your address - I'll be right over 

Jan

 

[Kaybo]

The only Dr. that I had that was truly a jerk was the Infectious Disease doctor recently.  One day I reminded Dave that I had an appointmentand asked him if he was meeting me there and his reply was..."Of course, I haven't had my daily dose of arrogance!"

K

[Debbi]

"Daily dose of arrogance" - that's funny!

Thanks for all the kind words from all of you - I think I was just in a bit of a funk yesterday.  I am still trying to get comfortable going out by myself, and it is going slower than I like.  I know you'll all understand what I mean here - I feel SO insecure when I'm in a store by myself right now!  It takes me a bit by surprise, becasue I've always been so independent and confident.  I know I'm just getting used to the "new" me, so I know this will get better with time, but ... damn, I hate feeling like such a weeny!!

So, this week, i am gong to push myself to do something uncomfortable every day - it's the only way that it is going to get any easier.  So, if you see someone sitting in the parking lot sobbing, that'll be me ...  kidding ... sort of... 

Hey, Wendy, good for you writing to the doctor! 

Oh, BTW, I just posted a current picture of my face (okay, that sounds weird!) to my blog if anyone wants to see progress...

Off to slay the demons...

[jerseygirl]

Debbi,

I just saw your photo and you look SO MUCH BETTER! CONGRATULATIONS!  Recovery from AN surgery is long for many people (including, unfortunately, me) so, please, don't lose your wonderful feisty spirit. Human bodies have the tendency to heal themselves. Right now you are probably at your lowest point with being hooked to PICC, feeling tired from antibiotics and not knowing yet what changes, if any, SSD brings. Things will get better, you just have to go through this yucky time.

I have to commend you for documenting your progress, your life after surgery and posting pictures of your face. I am sure you helped more than one newbie who is wondering what it is like.

                                                                      Eve

[leapyrtwins]

Debbi -

your "current face" looks lovely and I see a definite improvement from some of the other pictures you posted post op.

We all have our funks.  Just got over one myself the other day 

Some tasks are a little overwhelming post op when dealing with SSD.  You will get used to them with time.  Even though I have a BAHA now, I still experience hearing issues - the BAHA helps a lot, but it's not like being able to hear completely again.  I think your plan to push yourself and do something uncomfortable each day is a good one - just don't overdo it.  Take you time and good luck.

K -

very amusing comment by Dave!  He sounds like a regular member of our AN family 

Jan