still having bad days!

[Peggy]

I'm sorry, but I need to vent a little, I still find myself crying and feeling sorry for myself, I also cant stand when people tell me how lucky I am to have this and not something really serious, I just want to scream .  I'm not the type of person looking for sympathy or the person who always says why me, I'm usually pretty strong but some days this really wipes me out. I do have good support at home but I still feel alone.  I guess people don't understand how it feels to have a brain tumor ok, yes its slow growing and not cancerous , I don't look sick, so I think most people say whats the big deal, you'll take care of it and you'll be fine,  really? why don't I feel that way?  I guess if your not in a situation you really have no idea.

ok, I feel better, thanks for listening, sorry if I bored anyone

[Palace]

Hello,


Many of us on this forum if not all, face that situation.  I'm at the stage that I politely tell the person the "truth" if they are worth my time.  I surley found out who is and isn't worth the effort.

I understand what you are saying and it is important that you have a place to express your feelings and people here do understand them.



Regards,



Palace

[goinbatty]

I'll have to admit that having had so much cancer within my family and also working with cancer patients, I keep telling myself at least this isn't cancer.  But the truth is that it is life altering and it is as if only those with the AN or close family members and friends (after awhile you quickly find out who your true friends are), truely understand the ramifications.  A few weeks ago after going through multiple life stressors in succession, I frankly lost it.  It was the first time since being diagnosed that I felt truly down.  I finally broke down, called a friend and cried my eyes out.  Then as they say, I pulled myself up by the boot straps and am back to my normal self....for now anyway.  So anytime you need to vent to, just log on.  Hope you're feeling better. 

[yardtick]

Hi Peggy,

I can relate.  I have the same problem at work.  I might look fine on the outside, but if you really look at me you will see the effects of the facial neuroma.  The leftside of my face is weaker.  My smile is not what it was and my left eye is staring to droop in the bottom corner.  My left eyebrow doesn't move like my right.  Having to deal with the changes and the worry tomorrow when I wake up my face might be paralysed isn't easy.  The thought of having the nerve graft scares in beyond words.

The numbing pain, the headaches, the balance issues and the dizziness also take their toll.  My family has been wonderful, my husband a rock, but most of my co-workers couldn't give a dam.  My good friend and co-worker, Kathie, told me on Friday she would be there to wipe the drule for me brought me to tears.  She has read up on this thing and she's amazed I'm able to hold it together. 

Crying does help.  Laughing helps.  Going off and being alone helps and being in the company of people who love you and have an understanding of the difficulties you are going through helps.  You are not alone.  I hear and feel your pain.  So what if you or me or any one else on this board has a pitty party every now and then.  Its called entittlement!!  No one said this journey of life wasn't going to have a few curves, bumps and potholes along the way.   

I'll listen any time Peggie,
Anne Marie

[leapyrtwins]

Peggy -

I can totally relate to what you're going through.  I've been having a really bad week myself.  About a month ago, I felt absolutely great, but now I'm tired, crabby, and depressed.  This too shall pass.  You are entitled to your bad days, as are all of us.  If you need to vent the forum is a great place for it.

Here's hoping for better days,

Jan
 

[Jim Scott]

Hi, Peggy:

I'm so sorry you're having a difficult time...but it will pass.

Please know that you never need to apologize for venting, on this forum.  We understand your frustrations better than almost anyone, and that is why we're here.  Yes, your AN is benign (non-cancerous) but it's still a brain tumor!  We know, all too well, that this is usually life-altering to some extent, even with the very best outcome.

I hope and will pray that you feel better, soon.

Jim

[Cheryl R]

Is the nerve graft mentioned to you the one from the ear or the one from the leg?      The ear one  as part of my translab for my facial neuroma just felt like regular AN surgery but with a longer scar.   Not fun as well know as that was my 2nd AN surgery also but no worse than  the usual AN surgery.       Now the leg could be a different story.   
                                                   Cheryl R

[yardtick]

Cheryl,
From what I was told on Thurs, they will remove a nerve from my right leg, remove my left facial nerve and graft.  I'm watch and wait for the time being.  I see the Dr Jan 10/08, unless I should suffer from a more pronounced paralysis.

Anne Marie

[Pembo]

Vent here all you want...this forum was the only place I ever felt like anyone really understood. Yes it could be worse but this is your reality and you are allowed to be upset all you want.  And it could be worse HOWEVER it could be a hell of a lot better too.

Hope today is a better day........

[Dealy]

Peggy- So sorry you are feeling down-depressed and Blue. I like the rest can relate. My biggest problem is the prospect of going totally deaf. Some people have told me-so what-you are still alive. Yeah-but I can't hear and that is depressing in itself. So I guess we are ALL entitled to our own self pity moods. The only one's that will listen too me now is my wife and our little dog-and that's because she does not totally understand (speaking of the dog-not my wife of course) . However-I feel that animals are smart enough to sense when something is wrong. Today she followed me all around the house no-matter where I went-the dog was there. It is almost like she is saying-"well I still love you". Sounds foolish in a way-but it sounds good. I believe my co-workers at work feel that I need to get on with my life and stop boring them with my sickness details-so I don't anymore. I feel very isolated at work but I guess I will never change that by being demanding. The old saying "every dog has it's day". I would not wish one of these on my worst enemy. So Patty and the rest of you on this forum-"God Love YOu All' for at least your sympathy and understanding. I thank God for this forum and understanding people. Have a good evening all. Thanks Ron.

[Peggy]

Thanks to everyone for your support and understanding, I thought I was the only one that felt this way, not that I want everyone to have bad days too, but I guess we will always have good days and bad ones.  I am so thankful that I have you all to turn to, sometimes I get the feeling that people don't want to hear about it anymore, and for that shame on them.  I still have doctors appointments to go to in Oct. I think I've decided to do the GK, the only thing that bothers me with that is the claustrophobia, hopefully they can give me something for that.  I could sure use some "happy pills"  .   

Lets hope this week is a better one!!

thanks again
Peg

[Gennysmom]

Peggy,

Hang in there...we all have bad days, but there are good days too.  When I'm having a bad day I try to lay low so that it doesn't get worse...just give yourself permission to lay low and heal, because this about healing yourself emotionally too. 

They're pretty free with "happy" pills for us, so all you have to do is ask!  I had never had one until after diagnosis, and I take them now once in a while when things seem to overwhelm me, and they're great....I figure after I went through what I did I don't need any unneccissary stress.

Hang in there!!

[Mary 117]

Peggy, I understand and hang in there. Someone once mentioned the term "invisible disabilities". That is so true. I make it through the day ok, some days are harder than others but everyone thinks you are just fine because they can't see how much my head hurts, or how tired I am, or the latest eye infection... This is a great place to just let those thoughts vent. We have all been there and understand. You are not alone. We still can put both feet on the floor, at least I hope so, and somehow get through the day. Look for the sunshine and hopefully the rainy days won't last too long.

Mary
2cm AN, Middle Fossa, HEI Dr Brackmann, 05-24-05