Author Topic: super positive cheza has a few bad days, no way!  (Read 1908 times)

cheza

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super positive cheza has a few bad days, no way!
« on: January 03, 2008, 08:08:11 am »

How rude!!

How dare I have bad days, ok, ok, I realise I'm not invinseable, but I did for a while feel like super woman, this is maybe why I fell with bump last weekend, after a week of being with family and friends running round here, there and everywhere and after going to a friends party on the 29th I woke up on the 30th with my ear ringing and feeling like I had ear ache, my poor body said "whooo slow down girl" and that was that, 3 days of feeling as week as I did 3 weeks post op.  the coach became my friend for a few days and everyone had to tip toe around so not to set my ear off. I don't know if any of you have experianced this, its a little like having a bee fly past, really close to your ear it only lasts for about a millisecond, and seems to send an electric shock through your body because the bee in your ear makes you jump! its a horriable experiance and when my ear is bad it happens every 10 to 15mins but you never know its coming there is no pre warning.

I've realised that maybe this recovery thing is going to take longer than I'd first thought, I went for a walk yesterday and its bitterly cold here in england at the moment, winds from siberia are blowing our way and -5 doesn't make a pleasent walking enviroment, but I want to walk to keep myself fit and keep my energy levels up but when its so bloody miserable outside all you want to do is hibernate.

does anyone go swimming? I want to go but I'm worried about my eye, and I'm sorry I'm not wearing a patch, can you imagine swimming with a patch over your eye, please, your just leaving yourself wide open for all the arrrrrrrr where be 'ur parrot and 'ur ship then, ya be thrown over board or did ya walk the plank haharrrrrrr! NO THANK YOU! (no offence cap debs) Pirates just ain't my thing no matter how sexy jonny depp makes them look! and he does.  :-*

So anyway just having a general moan and rant now, hope I'm not boring you, but has anyone noticed that people who don't know you do a double take at your face, as if there not sure if that eye didn't blink with the other one or hey is she winking at me? then once they realise that no in acctual fact the whole left side is'nt moving,  then to make it worse they then try not to stare, for example, shop assistants who talk to you with there eyes looking somewhere eles or they just don't even lift there heads up from the till (cash register for those in the US) Grrrr doesn't winde me up just makes me feel like a lepar, so know I just move my head round to where there's is just to make a point. 

Anyhoo, now I've had a grumble, join in and have a grumble too!

Take care all, oh and by the way I'm feeling better now I'm just resting up a bit this week.

Speak again soon

With love cheryl XxX  :-*
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

lori67

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Re: super positive cheza has a few bad days, no way!
« Reply #1 on: January 03, 2008, 11:09:01 am »
Cheryl - I've done - and continue to do - the overdoing it thing.  I feel good, so I try to do things like I used to - and then all of a sudden, after a few days of that I hit a wall.  Then I tell myself, I'm going to pace myself and not do that anymore.  Then a few weeks go by, and I do it again.  Duh.  When will I learn?

I tried swimming last summer and was concerned about my eye.  I bought regular swimming goggles at the sporting goods place and they worked great.  And I didn't look out of place, because everyone else had them too.  As far as walking in -5 degree weather - BRRRR... I don't think I'd even get out of bed.  Is there an indoor shopping center or anyplace you could walk and not freeze to death?

And yes, I also hate when people stare at me like they can't quite figure out what's different about my face.  I'm sure they all think I'm winking at them.  Even since my eye surgeries, my AN eye is watery all the time now, so now I look like I'm crying in one eye on top of everything else.  I usually take my little ones with me to the store because then people pay attention to them and not me. (they are much cuter!).

I hope the bee in your ear goes away.  It's amazing how much a good grumble can make you feel.
Feel better and take it easy!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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Re: super positive cheza has a few bad days, no way!
« Reply #2 on: January 03, 2008, 12:47:21 pm »
Hi, Cheryl:

I'm sorry to learn that your too-busy Christmas holiday ended up with you feeling weak and sapped of energy.  That stinks. 

I can't offer any advice on swimming but your doctor might have some advice, as will other posters, I'm sure.

While not something I had to deal with, your experiences with shop clerks and such avoiding looking at you when thy realize that one side of your face doesn't seem to be mobile, is quite rude.  In the past, I've had one or acquaintances that had some facial abnormality and I wouldn't think of avoiding eye contact with them.  It's the same with strangers I meet.  I try to use the Golden Rule (do unto others what you would have them do unto you).  I can't say I remember to employ it 100% of the time, but I do try.  I think it would be a much better world if everyone did but that is probably just whimsy on my part.  :)

Anyway, you've earned a grumble and no need to apologize for having it.  Thats what this forum is (partially) for.  I'm glad you're feeling better, now.  :D

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Captain Deb

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Re: super positive cheza has a few bad days, no way!
« Reply #3 on: January 03, 2008, 03:52:27 pm »
No offence taken, Cheza me dear! Ye talks a good pirate talk ye do! The holidays do take it out of us at times as does the cold weather. We're here to listen and support you. Grumble on! Voicing it makes it lose some of its power over you. The old bee in the ear thing, ah yes, ZZZZZZIIIIINNNNG!!!  Too much noise and stress. Try to relax, a few hot baths and pamper yourself a little if you can.

Hugs,
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Charlotte Lady

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Re: super positive cheza has a few bad days, no way!
« Reply #4 on: January 08, 2008, 06:03:44 pm »
cheryl!

Sorry about your "crabby" patch.  We all have days.  Even before we had an AN, we had bad days (or at least I did). 
Take it easy!  No matter how you put it, you just had major surgery two months ago.  It'll take time...lots of time. 

As for the noise, try a soft ear plug.  I use the 27 level.  I get them in the drug store.  It's kind of funy to be putting an ear plug in my deaf ear.  I use them when I'm mowing hte lawn, vacuuming or going to an action movie.  Just too much loud noise!

Donna from Charlotte
1.5 cm AN removed 9/25/07.

hawk

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Re: super positive cheza has a few bad days, no way!
« Reply #5 on: January 08, 2008, 06:20:43 pm »
I have only been on this forum for a few days.  It is amazing to me, how much we have in common.  I wish I would of become part of this a long time ago.  It was on a whim that I called the ABTA to see if there were any support groups.  They connected me with all of you. 

In regard to swimming, great advice on the goggles.  I used goggles before my gunderson flap, and it worked out great.  With the gunderson flap, I where a pair of dark sunglasses that fit good to my face.  I am able to swim in salt water and pool water with great comfort. 

I know I talk about the gunderson flap alot, but it was probably the best decision I made.  The comfort level was instant. 

Take care of yourself, and know that we are all in this together.
Mark Anderson(hawk)
Acoustic Neuroma Removed, March of 1997 and May of 1998: gold weight inserted in 1997 and removed in 1998. Underwent a Gunderson Flap procedure on left eye, and fitted with a prosthetic shell.  Underwent a 7-9 nerve surgery.