I feel like a "phony"

[Obita]

Hello Sefra22:

I had about 10 weeks between diagnosis and surgery to dwell on it.  

About week 3 (after I met the surgeons and had it scheduled) the shock had worn off a bit and I had accepted my fate.  I cannot tell you how many times I heard from co-workers, friends, family:  "You sure are taking this well.  Jeez, I would be a wreck".  My response was always the same: "I will be fine.  The surgeons that are doing this surgery can do it in their sleep".  

Well, about week 8 or 9 someone at work said it again, I lost it.  Major meltdown.  I started crying, YES I AM SCARED BUT IF I DON'T GET IT OUT I WILL DIE!!!  This woman retreated, said she was sorry etc....then I felt bad for making her feel uncomfortable.  Thats why we say we are fine even when we are not.  People cannot handle bad stuff very well.  Its human nature.  

Then, frosting on the cake here, one of the young gals said to me on my last day before surgery: "don't worry, I was put under for my wisdom teeth, you will be fine".  I could not quit laughing.......then I felt bad again,  I know she meant well.

Cheers,  Kathy

[GM]

Wow…what can I add to this that hasn’t been already said; so many good points, so many strong emotions…  For me it feels like a “facade� so many people see the “strong� way that I deal with it.  They don’t see the days that it gets me down.  I can’t relay how I feel on those bad days to my wife because she worries that I’m getting worse…and she cries.  I can’t talk about it with my kids because “Dad’s are supposed to be invincible� right?   Plus…I don’t want to worry them.  As for friends…they just don’t understand.   I feel even worse when I talk about it sometimes here on these sites because there are so many people dealing with major problems from their AN that I feel like I shouldn’t even bring it up.  So I created an electronic journal that I type into (password protected)…there I can vent, yell, curse, and let it out so I can put my “strong� face back on for the rest of them.   So…you’re not alone…not at all.  Just don’t do like me…write about it here.

Gary

[Sefra22]

I guess you really don't know what you can handle until you have to. I, too believe what doesn't kill us makes us stronger. I think we are all brave.

[matti]

Sefra - I had my first meltdown 10 days after surgery in a Target store. It came out of no where, but was exactly what I needed. I had been the strong one for everyone from the moment I received my diagnosis.

Meltdowns are good for the soul and your minds way of cleansing!

hugs,
Cheryl

[Cheryl R]

    I too hear that I am doing so good and my answer is usually   What choice do I have?   In most ways I am,but I do have my days.       As a nurse though I do feel fortunate to be able to walk and talk and live a close to normal life.      A fellow nurse who had a liver transplant was not so fortunate and died past a miserable period of time where he never did get any quality of life before he died. We were the same age.   
You probably will find too once you have surgery that after a period of time when you look fine that everyone will assume are completely back to normal but the left over residual effects of the off balance feel and loss of some or all of hearing do not show up to others.
Hang in there.         Here is where we are all completely understood!          Even the doctors don't really understand what it feels like!                  Cheryl R.
   

[Captain Deb]

What people say to me is "well, you look just fabulous!" and I want to say, "well, thank you but I feel like crap most of the time, I can't hear anything, and my head feels like it's going to explode."  But I don't, I just say, "gee, thanks." Oy!
Capt Deb

[Joef]

I actually dont call it a Brain Tumor .. I call it a "Ear Tumor" and people dont get all freaked out !!!

[Patti UT]

What people say to me is "well, you look just fabulous!" and I want to say, "well, thank you but I feel like crap most of the time, I can't hear anything, and my head feels like it's going to explode."  But I don't, I just say, "gee, thanks." Oy!
Capt Deb

so when they ask, how are you, "fine thanks' is it because common, no one has the 2+ hours to hear how we really are!

[Gennysmom]

Joe, you're way too nice.  I say brain tumor because if they can't handle it, it's not my problem.  I don't go into details, but I got tired of making others feel better when I told them about my condition when some didn't even ask me if I was OK.  There's no way to sugarcoat stroke or cancer, and I don't want anyone to think this isn't up there as a serious health issue.  OK, off my soap box....sorry. 

[Pembo]

Gennysmom...I totally agree with you, I too got tired of making others feel better. It's my problem and I'll deal with it my way. People don't want to hear the truth anyway. I also said brain tumor.

When I was feeling like crap most of the time and people would ask how are you doing I would say I'm doing okay but recovery is slow...Which they usually followed up with "But you look good" at which point I just ended the conversation. I'm not sure what person they were looking at but in my mirror I didn't really look so good. LOL

You have to have a sense of humor and a strong support system(like these boards) so you can yell, cry, vent and laugh at all the dumb things people say.

[Patti UT]

Must be something in the AN air this week.  I really feel like I'm heading for the BIG meltdown. The vertigo, tinnitus, headpain, and lack of sleep this week is really getting to me. Don't know why it get so intense sometimes. Then add my kids bickering ( last feew days of summer, really getting sick of eachother) and hubby not " gettini' it"  at all cuz he's gotta go golfing. I'm about to crack.
Maybe after the kids go back to school next week I can have a private pitty party and get it out of my system. maybe it's time to give in and go back to the neuro and try some meds. I've been doing this for almost 2 yrs with no meds.
Thanks for this board to vent on. 

Patti UT

[Obita]

Hello fellow ANers:

Reading this thread and especially the last post from Patti UT made me realize how very important meeting and becoming friends with another ANer is to me.  I am one of the luckiest people on earth to have an AN friend 40 miles away.

Shortly after my first post on this forum, Denise wrote to me as we had the same surgeons. (a real good reason to put your drs./state you live in etc...in your signature box)  I wrote back and we decided to meet. 

Our 2 - 3 hour visits over coffee are so good for the head.  We can talk about how our families "just don't get it", how our lives have changed, how lucky we are (we are alive and having coffee & muffins!!),  how our dogs understand but people don't and anything and everything else.

I shall call Denise the next time I am on the verge of a meltdown and I hope she will do the same and call me.  It will be so much more fun to have a pity party with a friend.  (Patti UT - you can call me when you are having yours)

This forum, emails, phone calls or in person.......how nice it is to connect with people that GET IT.

Cheers to AN friends,  Kathy

[Gennysmom]

Kathy....couldn't of said it better myself!!!  The forum is invaluable, but the phone talks and face to face meets are really over the top.  It made all the difference in the world to me to meet Nan and see and feel her scar before I went through the same surgery.  Networking is the best!!!!!!!

[pattibobatti]

Now, this is a good thread!  I can't express how important it is to me to have you all.  I went to the mall a few days ago and realized how 'different' I still feel.  It doesn't feel very good.  I realized again how much my life has changed . 

This AN life is a hard one and I want to keep positive.  Realizing I can start typing to people that share alot of this crud makes me feel  better.

Pattibobattti

[Captain Deb]

Must be something in the AN air this week.  I really feel like I'm heading for the BIG meltdown. The vertigo, tinnitus, headpain, and lack of sleep this week is really getting to me. Don't know why it get so intense sometimes. Then add my kids bickering ( last feew days of summer, really getting sick of eachother) and hubby not " gettini' it"  at all cuz he's gotta go golfing. I'm about to crack.
Maybe after the kids go back to school next week I can have a private pitty party and get it out of my system. maybe it's time to give in and go back to the neuro and try some meds. I've been doing this for almost 2 yrs with no meds.
Thanks for this board to vent on. 

Patti UT

Maybe? Maybe?  There are good preventative meds for chronic headpain. The one that has helped me the most is Neurontin 900x2 a day. Get thee to a headache specialist, Wen......er, girlfriend! I did the no meds thing and then I did the too many meds thing and for the first time in nearly 4 years I feel like i'm doing the right meds. Without a headache, my energy level is better (WAAAAAAY better) and the world is better in general--the people around me even "act right" (ok ok it's me that's different, not them) All in all, life is a lot more tolerable. Just passin' this on as it was passed on to me on this forum!
Capt Deb