Which is worse?

[DeniseSmith]

You know i am so crabby today I need to vent or I am going to take it out on someone here at work.

My S.O. sells cars for a living and he was invited to dinner at one of his client's homes.  We both went and while the people were extremely nice and very good people.  They did have an 11 year old son who asked about my face. Okay, he's a kid and thats understandable.   But I was already self-conscious about meeting new people, so that didn't help.

Then on Sunday we went to the MN Wild v. Detroit Red Wings hockey game. Where I could hardly get to my seat because of the stairs and the steepness and people looked at me like i was drunk, because I had difficulties manuevering.  I hate that!

I can't figure out which pisses me off more.  Looking like I do (face) or looking like I can't walk.

Also, why is it my S.O. keeps trying to convince me that its not noticeable!  HELLO!!!! When i talk only half my mouth moves, people do notice!!!  I am so sick of all this B.S. and I am seriously upset.  Nothing is happening, its been almost a year. And yes, I have made progress, BUT,  I never knew it was going to be this bad. I never had anyone explain about the after surgery symptoms, and i never had a choice, surgery was my only one due to the size of my tumor.  I am so mad right now i could spit on someone.  I only had 34 days from diagnosis to surgery, and then the surgery was moved up a week, because my stupid tumor was growing fast. Oh yeah, no slow growing tumor for me, hell no!! I had to have an agressive little bastard in my head.   So I never had time to researh my condition.  No computer at home, and too busy at work. Plus, i didn't know there was a site like this until after I got back to work in July.

I have also been told by some people close to me that I have no f---ing sense of humor anymore. Well, no s--t, I am not happy, I look ugly, not that I was a beauty queen pre-op but I was attractive, I can't walk a straight line,  and to be honest there is nothing funny about all this to me!  While i can appreciate the humor on this site to some degree, I just don't get how you got to that point, to be able to laugh about this crap.  I am not laughing and don't see how i will ever laugh or find humor in this stupid stupid tumor!!

I really just want to crawl off in a hole and never be seen or talked to again.  I am not depressed. I am just very pissed off and angry right now.

Thanks for letting me vent.

Denise

[Karla83401]

Denise,

I am so sorry that people can be so insensitive at times by staring and that children being so brutally honest in their questions. I am a firm believer that each of us should make a serious effort to get out and get to know people that are facing different life situations than our own. If we were all willing to do that it would then nobody would seem "different" and we could all look at people for who they are.

I know that we all understand and justify the actions of these people because we have all been in situations where we stared at something out of the "normal". That being said, it does not ease your pain and anger. I read your post and felt that I wanted to respond yet did not know exactly what to say so I decided to let you know that I am so sorry. Please know that if there is anything that I can do to help ease things for you please let me know.

I am proud of you for going out there and leading the way for the rest of us who may be walking the path that you are walking now.

Take care,

Karla

[Gennysmom]

Denise,

Big hugs to you whether you want them  or not.     If I were you I'd feel the same way, and in the back of my mind I wonder if I will be where you are later this year.  I think stark realities are good for us here, and I know I'm glad I will have so much time here before my surgery.  I think frustration is the emotion I don't deal with well, and I'd spend plenty of time there before depression would ever hit.  So please, vent, get mad, throw things, it will be good to get that release.  I'm sorry you're not where you want to be at this point, and I'm cheering you on to get past this!  Hang in there!!!!

Kathleen

[Joef]

I like questions!! I wish I have more...I rather have understanding than staring and making up you own ideas....  Its been months now back at work .. and some people know the details, but most dont .. and would you believe only 1 person has asked me about my BAHA !! (and we had a nice chat over coffee in the lunch room) and I sometimes wear the bright stickers, you can miss it !!!

[Battyp]

Denise...

{{{{{{{{{{{{{{{{[HUGGGLES}}}}}}}}}}}}}}}}(as Phyl would say!

No deep breath in through the nose out through the mouth..feel like slapping me yet?   

Venting is good we understand or at least I do.  I'm 7 mos post op and things did not go as well as expected.  Does it ever?  I like you had to take the dont' stop at go approach to my surgery and in doing so was told nothing to worry about back to work in 3 to 6 weeks.  Well it's been 7 months and they only allowed me to go back to work so I didn't lose my health insurance.

I feel the same way you do.  I keep wondering why I'm still here but know it's to see my son raised and do something special I just dont know what it is yet. 

I have no S.O., I've been single for 10 years following the death of my husband (and abuse too). The only other guy I loved married someone else the weekend before my surgery. So feel fortunate that you have someone who cares about you enough to tell you he doesn't notice your condition.  To me thats unconditional love.

You asked how some of us got to joking on here and were able to.  Well, for me if I didn't joke I'd be crying constantly.  I'm so terrified about my future.  I own my own home which cost me dearly to get (I was hit by a drunk driver and was able to put a downpayment down after I got a small settlement) I was being harrassed by my old neighbors as I didn't drink or do drugs so they targeted me to move and harrassed me and scared my son like you wouldn't believe. And I realize  that within the year I could be homeless.    I don't see myself being able to go back to work full time and social security isn't enough to pay the mortgage with and my son is going to start college soon.  I feel stupid, unattractive and am trying to come to terms with I'm all alone in this world, even my family doesnt' undestand and isnt' real supportive and my friends have abandoned me for S.O.  So in other words, life isn't so easy.  I CHOOSE to laugh when I can (and crawl in a hole any ohter time).  This site has given me an outlet, and understanding and some pretty great cyber friends otherwise I don't know where I'd be as I was wishing I had died before I found this site.

I'd have cried too if I had to go to a red wings fan as everyone knows Dallas Stars is better )  Now if that doesn't get you riled up nothing will  lol  Just remember no matter how  bad you are there are others who are worse off and start looking at the positive side.  I left a hospital that not many leave alive as it's a cancer institute,  I am still here which the doctors consider a success as I wasn't  expected to make it I'm sure yours had doubts too from the sounds of it, I get to discover new things and new frustrations everyday. 

I'll get off my soap box.  I want you to understand its ok to be angry, it's ok to vent we're here for you.  If you ever make it to FL, know you have a friend here   

[DeniseSmith]

Thanks, you guys!

Batty, i have nothing bad to say about the Dallas Stars, they used to be the North Stars and i saw them play a long time ago.  I am a Wild fan. 

I am scheduled for an MRI and a visit to my dr. on the 9th of May, on my one year anniversary. I don't know if i want to call it an anniversay, anyway.  I am kind of stressing about that, so that might have something to do with my anger. And it will be one year for me finding about about the tumor on the 5th.

Denise

[nannettesea]

Denise-
I hear you all the way--no pun .

I get angry, too.  If I hadn't been so anxious to do the surgery, thinking it would fix my dizziness, I would have thought long and hard before doing the surgery.  These last 7 months have been hell.  And I'm not better, much, much worse.

It's okay to have the anger.  Feel it, indulge it, let it out so it doesn't fester.  Then when you're ready, let it go.  And it will come back!  We go in and out of these emotional phases, which is oh so natural.

 I know it doesn't help when people say,"It could be worse."  Today I think, would it be better to have facial paralysis and not be dizzy?  You can work, girl, and I am so jealous of that.  I don't even know if I'll get disability...and like Batty, I may lose my home if I can't go back to work.

This Forum is where people understand.  Remember, there is a lot of love here.  As my friend Cheryl and Phyl say, keep breathing...long, deep breaths, closed eyes.  It helps.

We love and care about you.  Keep hanging on...

Nan

[Captain Deb]

Denise,
I don't think there's anyone in this forum who hasn't felt like you do at one point or another on their AN journey--myself included--more times than you can imagine.  Sounds like you have a dose of Post-traumatic stress disorder which is pretty normal following a health crisis like an AN and major surgery.  Anniversaries of traumatic events are definitely triggers for it.  I sought counsel from a professional for mine--usually on the phone as I spent the better part of 2 1/2 years in bed with a pretty much constant migraine. I really thought my life was over--never going to get any better, and why the heck was I alive, anyway.  My poor husband suffered as much as I did with worry and anxiety that his best playmate would be an invalid so close to his retirement. It was hard for me to see anything past my own crappy predicament, much less have a sense of what he was going through.

I finally figured out that I had to be grateful for what I did have instead of focusing on what I had lost. I had to quit asking "why me" and start asking "why not me" and what can I take from this that would benefit others so I could quit focusing on myself and get rid of the "poor me's."  It really did take time to process that one!
My headaches have eased up and become manageable, and my balance is better. I didn't have any facial paralysis post-op, so you have my complete empathy on that one.  

As for the humor--I have always had a wicked sense of humor--and I've fought like heck to get it back--2 years ago there was nothing funny about my life whatsoever.  It has been a huge part of my healing process--and I love to share it with those who choose to indulge.

Venting is part of the emotional healing process--there sure are a lot of folks here that are glad to listen.

Captain Deb

[Raydean]

Hi Denise

In reading your post i could see myself.  We share a similar AN journey with many of the same outcomes.  Like you  I had no choice, I was treated under emergency conditions.  I know that it's extremely difficult to research and to make  a decision regarding treatment options, but it's also extremely difficult to have no choices.  it's hard to put it into words, but it's something that you have clearly felt as I know I have. In my opinion it adds to the resentment

It's hard to balance who you were before (and what you were able to do) with who you are now and what you may not be able to do. 

Denise, i wish i had more answers for you other then to say I do understand. I'm a level 6 on The House/Brackman scale.  8 years later I still  walk like a someone with a alcohol problem.  In the beginning, I worked so hard at becomming the person that I used to be that I pretty well lost who i was.  It help me to talk to someone.  Be it here on the list or in person talking about the problems opens up doors to accepting and healing.  To be able to move on.  Knowing you aren't the only one. (God knows we don't wish this on anyone, but it sure helps to know that there are others like us out there.)

One thing I know for sure, you are an amazing lady, with alot of inner strength and courage. It hasn't been easy for you, but here you are.  I'm glad you found this group and the many great people within it.  if I can be of any help please feel free to email

best to all
Chet
and  Raydean

 

[Larry]

Denise,

Venting your anger is one thing that this site can offer. You will gett lots of support here and I must say that I was deeply moved by your words. I am relatively lucky (at this stage) coz, I only have the severe headaches, however, my growth has grown back so i will be facing an uncertain predicament at some stage.

people generally are very cruel if you don't fit the "normal mould". I can't say that i know how to deal with people staring or commenting behind your back. It's rude and inconsiderate.

Personally, my biggest fear is damage to my facial nerve mainly from an employment situation as I am self employed and have too much debt that I'd rather not have. If I have to be out of work for too long, we will be in deep doo doo. I know you struggle to appreciate the humour on this board and I can understand that. For me, it has been a life saver coz when I am writing or reading something stupid, its 5 minutes of no headaches and to me that is worth gold.

Denise, keep venting your anger on this board and you have the right to be very angry and don't let anyone tell you otherwise.

For the caring posters on this site, and thats all of us, we want you to get better. Emotionally as well as physically. Try and stay positive that there is a light at the end of the tunnel. It just may take time to get there.

Laz

[Pembo]

After reading on this board since my surgery almost 2 years ago I've found a common thread, at about 9 months post op, you get pissed off. It happened to me and I've read it many times. So you are normal. Hang in there and vent away. We do know what you are going through.

[thecakes]

   Denise, vent, vent, vent all you want dear.  That is what this is for.  We all have these days.  Let it rip!  My surgery did'nt effect my face, I am very lucky for that, but I to am taking the long way around in recovery.  We are all in the same boat together.  I guess we all have to be thankful for the things that we have and believe it or not, for our good health.  We are healthy, even though we walk crooked and look funny  and thats better than alot of people.  Its easy for me to say but, try to think the hell with the poeple that stare.  This is your life now.  How dare someone bring you down like this.  You been through to much.  Keep your chin up, things will get better.  Keep us posted.   Patti

[lmurray69]

denise I too am sorry that you are haveing a hard time,I have not had surgery yet, I am in the process of tryingto find one in Missouri,, I am so glad that you found a way to release your anger and it isbetter to dooit here then get your self in trouble else wear.. I am deaf on the left side and my an is on the left side also.. I hope that you can get threw this all right..I will be sure to  put you in my prayers.. The dizzyness is not fun .I got a cain to help me walk. The bright floors throw me off or designs in the walls and floors.. and if they get to cute with you stick out your toung..and laugh at them.. DOnt let their ignerance bother you.. Its their lose...Your friend always Linda Email anytime

[Kathleen_Mc]

Denise: I can totally relate to where you are right now. I was there soon after my orginal surgery. I never was a real beauty and tried to just "look my best" and then this happened. Boy did I look terrible, face messed up, hair shaved off, couldn't walk straight, eye not blinking, drooling! And I was single at the time and not wanting to be. It took a long time but I got better. I have had many "plastic" repairs to my face and although I am not "back to where I was" I have acepted who I am now and how I look. Sure there are days not but most I do. (oh I forgot....constant weight issues too and pimples).
I have days of great frustration and feeling "fed up" and although I would like to just curl up in a ball and hide I don't have that option anymore (two young children).
I know you can't imagine it but it will get better, over time, and with talking about it.
Kathleen

[shoegirl]

Denise,

I read your post and was deeply moved.  I can remember being stared at and talked about as a child, teenager, and even as an adult.  Some people think if you don't look, walk, talk, etc. like them then you are different.  These people are shallow.  I respect those who look, recognize, and reach out.  Unfortunately, these people are hard to come by.  All of us have something that make us different.

Please vent if you need to, others will learn from your words.  I wish I could find the words to help you through this because "I am sorry" isn't enough.  Please be good to yourself.  Put yourself first, do what makes you feel good.  If it is being angry - so be it.  We will be here for you.

I wish you all the best, Suzanne