ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: arkansasfarmgirl on April 12, 2009, 03:13:14 pm
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I thought I was doing better. I thought I was more accepting of my situation. I've been going about my life like nothing is wrong with me. My accupuncture treatments seemed to be helping, as I can close my eye with less effort, and it's easier to chew on my "bad" side. I've been making tears a lot better too, which makes me way more comfortable. I bought a pretty dress to wear to church this morning.
And then BAM!! I consented to having my picture taken with my hubby and kids. Big mistake. What I see in the mirror doesn't look anywhere near as bad as what I saw in those pics. I started crying, slammed the computer shut, and hid in the bathroom for an hour. I still feel like poop, even after my mom came in there and kicked my butt for me. I feel dumb for having thrown a fit, but I can't get over how awful I looked in those pics. :-(
Vonda
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Just because you are doing better (sounds like you are) doesn't mean you won't have moments like the one you described. Remember that you're still the same person you were, you just have issues that will take time and patience to deal with. It is so exhausting on a daily basis that I think you are entitled to lock yourself away for a while, as long as you come back out.
Best,
Marci
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Photos do NOT show what other people see in you!
I have pre-treatment minor facial weakness that even some of the neuro-ots can't really see -- my eye is slightly open wider than the other, but especially if I'm not tired it's barely noticeable. Even experienced drs. have said it looks like it could just be a normal variation (not everyone's are precisely the same!)
HOWEVER, in pictures, my "normal" eye looks like a dime, and the other like a SAUCER!! :o It's insane!! It is SO not like what I see in the mirror or what friends, family, co-workers or even doctors see when they look at me in real life.
So, just as the camera adds 10 lbs., it really exacerbates every little thing, beyond what is visible to the normal eye!
In fact, I just left an Easter party and I took a photo of someone there, then looked at it on the digital display, and was shocked at what it looked like -- the flash had illuminated every little crease across her neck in some crazy way and made her look 20 years older than she is!! She was right there in front of me looking SO much better than in that stupid photo!
I am sure you look much, much different to real people in real life than what any cruel camera shows! It is not reality.
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Vonda~
I am so sorry that you had to experience that...I truly know what you are feeling. I wish that I could say that that goes completely away, but it doesn't. I was in a LOT of pictures this weekend as we are with all of my husband's family in Houston and my SIL is here too. She is a big photographer in LA and takes TONS of pictures. It is great having someone in the family that is ALWAYS taking great picutres of my kids but we always play around with the camera too. It is really fun...until I see the pictures! Just this afternoon, we were taking some crazy shots outside of the two of us (I know, it is hard to believe that I would do something crazy! LOL) - we were having so much fun & laughing and then her hubby showed us the shots. They were GREAT of her, but not great of me...it made me very sad for a few seconds - until she told me she had a great tool on Photoshop where she could pull my mouth up a bit!! ;) I thought about it later, I can't change things (Lord, knows I have tried) but it is the same old thing - people that know & love me, know the REAL me - & they love me anyway. It is like Steve said on another thread, it is that genuine happiness that radiates from within and thru the eyes that means the most. It sucks...that is the only word for it, but YOU ARE BIGGER than this! It won't necessarily go away, but it will get easier (& the time spent locked in the bathroom will get less & less!).
K
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Hi Vonda,
I can't remember when your surgery was, but the same goes for me as far as my eye starting to close some on it's own (with some effort) and chewing going better, and just feeling more normal (I'm 10 wks post op). I look in the mirror and have also thought that my smile was getting more back to normal. Then, like you, I saw some pictures of myself this evening. The ones taken outside were especially surprising. My good eye totally squints... my smile that I thought was almost back was still turned down in one picture. My bad eye just sits there open. I agree - not like looking in the mirror at all. I've read your posts before and I think you've made great progress. You're doing great; you're active with a good outlook, etc. I'm telling myself this while I tell you this right now as well - we've made a lot of progress. We're not there totally yet, but it's getting better. I really believe it will continue to get better, even with the bad days that feel like setbacks. Believe me, I bet you're more of an inspiration to people than you think you are, especially when they see how far you've come.
Hang in there! Thank you for sharing openly.
Keri
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people that know & love me, know the REAL me - & they love me anyway.
Well said, Kaybo :-*
Jan
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Vonda, I had my facial neuroma 3 yrs ago. I recently looked up pictures from that surgery and even found a printed out one. I could not beilive how horrible I looked. I was told ahead it would be at least 8 months for improvement and it was and for long after. Now to look at pics and see my face at rest is decent is so nice. My profile pic is from a year ago. I can't get pics on here or I would put both. I do remember thinking I would never look ok again. I was back to work as a nurse and no one ever made fun of me or made a bad comment. I still have an occ person say my face looks so much better.
It's ok to be so frustrated,sad and why did I deserve this. I think the person with it pays more atention to it than others. It is just something that others see and wonder what happened to that person but pay more attention to your personality. I wish I could make it easier for you. I did not end up back to normal but good enough considering what I went thru. I have no big answers for you but know one has to put up with time. Our life goes on and we can do the best we can with that life.
Big hug, Cheryl R
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You know, even before my facial paresis I did not like most of my pictures.
This is my theory -- photographs are static images, while our faces are dynamic. Somewhere around here there are photos and a video of a get-together in Los Angeles, and if you look them up you will see what I mean. In the video everyone is having a great time as they talk and interact, and that is what you see as you watch them. But in the photograph, you can see the various degrees of weakness that you simply don't notice in the video clip.
So just remember, in the mirror and in person, you really DO look better than photographs suggest.
Sara
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AWW, Vonda, I know how you feel >:(
I still get depressed and don't even want my picture taken, but people say it's really not that bad as I think. They also don't feel that heaviness of a face with poor muscle/nerve stimulation! Or an eye that won't close >:(
Did you see my photos I posted this weekend? And this is almost 3 years post surgery (the last 2). So yea I can empathize.
Actually sounds like good progress, if you can close your eye and tears even coming down. That is PROGRESS! Slow but steady. I just stay away from cameras if I can, and if I must, I hold my AN side to someone.
That is how I cope, and it's ok for me.
http://anausa.org/forum/index.php?topic=9252.0.
Maureen
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I really like what lilan said so well. And the others, too. Your loved ones love you, and the beauty you have is greater than any picture can show!
Most of us have pix we've thrown away and others we're not fond of. So "chunk" the ones you hate, knowing that you look better than they show, anyhow!
We love you, too!
Kathy
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Thanks everybody. I guess I just needed a little support and understanding. My family is great, but never having lived it, they really don't get it. They're like "but you have hope of it getting better' like that in itself is supposed to make it bearable in the meantime. It was a shock to see myself like that. I was able to go back and look at the pics today, alone, without crying. That's progress, right? :-)
I was talking to my mom today and she said I was very very tense when she took the pics and that made things appear worse. She said my mouth is actually moving the slightest little bit when I smile (nearly 5 months post surgery) and looks normal at rest, unless I get tense and then it draws down. So that made me feel a little better too.
I'm going to try to post pics of my little ones here:
(http://photos-c.ak.fbcdn.net/hphotos-ak-snc1/hs019.snc1/3020_1144688500418_1323675078_359506_2182171_s.jpg)
(http://photos-d.ak.fbcdn.net/hphotos-ak-snc1/hs019.snc1/3020_1144688540419_1323675078_359507_3265687_s.jpg)
In case that didn't work, here's a link to my facebook photo album: http://www.facebook.com/editphoto.php?aid=11429&success=3&failure=0#/album.php?aid=11429&id=1323675078
I'm very proud of my chirrens. ;-)
Vonda
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Vonda ~
First, let me state that your children are adorable. I'm sure you're a very loving, caring mom - and that surmounts almost everything else. I admit to being a bit distressed reading your post about seeing yourself in Easter photos and being upset because of how you appeared. Frankly, I found the entire post to be poignant and commend you for openly sharing those painful moments that I hope have now passed. Granted, usually no amount of 'outside' encouragement can overcome our personal feelings but you do have to consider that - as you once told Angie ('Crookedsmile'), we are often our own worst critic. Although it really disturbed me to read about your pain from seeing photos of yourself that disappointed you, I'm relieved to learn that you dealt with your distress - with a good cry in a locked bathroom (an age-old stress remedy my wife has employed once or twice) - and emerged victorious, regained your emotional equilibrium and usual positive attitude. Those beautiful children of yours are certainly a valid source of pride, as your own fortitude and spirit are a source of strength for you. I pray your healing will continue apace and that you'll have fewer (if any) such negative experiences in the foreseeable future. :)
Jim
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My husband told me last night that at least I have my hair. ROFL Poor guy. He lost his hair in his early 20s. When I met him (age 26) he was already bald, so I don't know any different. I told him that since he can put on a hat and cover up Mt Baldy, that it doesn't compare. <giggle>
V
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Okay Vonda,
You now have me crying like crazy. (let me go get my kleenex box.........really) Okay...I'm back. I actually got a Bounty papertowel and we will see if everything they claim is true. (lol) Whew, that hit me hard I guess because I do know exactly how you feel. I just got back last night from a 7 hour drive to Baton Rouge, Louisiana for my consultation with the OculoFacial Plastic surgeon. She took tons of pictures and had me trying to make normal facial expressions and when someone has you trying to do the simplest things then it is a terrible reminder that those things are gone. I did have a liquid face lift yesterday with approximately 30 collagen injections which were very painful (tried to pass out a few times, vomited, etc) I am bruised and swollen. This was done in her office with a topical numbing cream. (yea right.) I can't say that I feel any better after all of the pain and $$$$ but I feel like I am trying to be proactive and do something. My husband just now called me and if this tells you anything it is perfectly normal to have down days. I was fine at the beginning of the call and then just was sobbing by the time I got off. Emotions run high because I guess when I pay alot of money like I did yesterday at the Cosmetic surgeons and you have high hopes of looking like the old you when you walk out but then you still can't blink right and your smile still isn't there............It's like why bother. It was really hard seeing all of these attractive ladies in there just getting botox to erase wrinkles and here I am 38 and just trying to look normal. I'm sure that I'm extra emotional right now because my face hurts like crazy, I'm swollen and bruised. The human pin cushion for sure! I am going to go ahead and have eye surgery May 11th on both eyes. She is not going to do the canthoplasty as she thought that was too aggressive of a surgery (remember this surgery/canthoplasty was recommended by another doc...this was a 2nd opinion visit) She thinks she can accomplish the same thing without cutting tendons and muscles. I will have incisions under both eyelids and lifts done but a quicker healing time with the same type results. Vonda, I really know what you are going through. I think that facial paralysis is much harder the younger we are because there is so much pressure to look our best. I haven't shopped for new clothes in over 20 months as I think again.......why bother. I try to be strong and I can talk a mean game when giving support to other people but it is so much easier said than done. Do know that you are loved. Go easy on yourself. Give me a call. I would love to meet up sometime. It does feel good to get out and about. By the way, your kids are adorable.
Angie
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Thank you Angie. I was going to call you last week, but my mom had a botox appointment the same day as my accup. so we rode up there together, met my sister and went shopping. :-) Maybe next week?
Sounds like you got tortured at the surgeon's office. Yuck. Accupuncture needles aren't nearly as bad, I promise!! He put a bunch more in my face last week and I looked like a porcupine, but only one of them was a little ouchy going in. I can't wait to see how your eye surgery comes out. good luck with that--I hope it works as well for you as you want it to.
Wanna hear a funny? Your talking about not buying clothes made me remember this. On my first trip to the accup. doc, I did not realize that I would be expected to strip down to my undies. Or that he was going to stick needles in my legs. And I hadn't shaved my legs in at least 2 weeks... :o OMG I was so freakin' embarassed!!!!!!!!!!!! I made sure those babies were slick when I went in last week! ;D
Hope your sore face heals up quick.
Vonda
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Vonda,
You make me smile.
Angie
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It sounds to me like you are loved. To be quite honest, that's all that really matters. WE all get caught up in this external stuff, but it's much lower on the list. I think you should count your blessings to have such a wonderful family.
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Hi Vonda, just a couple of tips that might help. Keep a journal and note good days and bad, my face changes with stress, tiredness etc. When I have a good day I play with my cell phone and take pictures. I also practice different ways of smiling to improve the look.
My facial therapist has me doing lots of exercises, one that really loosens up my mouth is blowing through your lips like a horse. Not advisable in public unless you are near Hay. Anyway whatever it takes never give up, and its ok to cry in the loo.
Lainie.
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This is possibly a bit late, but I've never been real connected to that whole time/space continuum thing anyway.
All things in moderation, including moderation itself...it's okay to be out on the edge occasionally. Adults are allowed to throw tanturms, as long as you don't make it a lifestyle choice. No reason to feel bad about it. I worked in retail security for four years, you would not believe some of the minor things adults will throw a fist pounding, scream in your face tantrum about. Being upset and frustrated in the long grind of AN recovery... the fact that more of us aren't in a continual snit of frustration and anger is what amazes me. People with AN's truly are rare individuals, even beyond the medical statistics.
Having never been very photogenic I've adopted a paraphrase of a Mark Twain saying... "There are lies, damn lies, and photographs." If I hid everytime I saw a photograph that I thought made me look terrible I'd be so reclusive that it would make Howard Hughes look like Paris Hilton. I used to avoid the lens side of camera, then I realized that if one of my friends or family was trying to take my picture it's because I have value to them. That's a pretty wonderful thing and my need to honor that value turned out to be stronger than my ego. I made the decision to just think of myself as refrigerator art... you know what I'm talking about, those things you hang on your refrigerator that would never be judged acceptable by any objective social measure of art but are valuable beyond compare because of where they came from...your first graders heart.
The primitive mythology got it exacly wrong...the problem with photographs isn't that they capture your soul...it's that they don't and can't.
..take care.. tim b
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The primitive mythology got it exacly wrong...the problem with photographs isn't that they capture your soul...it's that they don't and can't.
..take care.. tim b
Tim, you're a pretty smart dude...for a Hillbilly. ;) My hubby has a friend that reminds me a lot of you--very philosophical and intelligent, but looks like a caricature of a mountain man. teehee Clint is one of my favorite people...
Vonda
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Tim,
VERY well put. I think all that clean mountain air must help you think clearly!!
Vonda, I think those little ones of yours could make anyone smile - some of us just show it a little differently than the rest of the world! ;)
Lori
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Thank you very much for the kind words. I only play a hill dweller during the day, at night I'm a suave, debonaire, power-tie schmoozing machine. Once you get to know me you'll get over using that 's' word. Somewhere on my facebook page is a note describing my adventure of standing in the living room of our log (as in wood) home with a burning chunk of firewood in my hands and being unable to formulate a plan as how to solve that problem. People who have read that account rarely use the word smart when referring to me, unless it precedes an alternative name for donkey.
Thanks again for the kind words...
..take care.. tim b