ready to give up

[wendysig]

Hi Kerri,
Starting your own support group sounds like a fantastic idea!  I was going to suggest that if you can only get a few people interested at first that you could take turns having the meetings in each other's homes, or if you have the room just having it in your own home is a great idea too!  Pleas let us know  how it goes!

Best wishes,
Wendy

[Syl]

Kerri:

I hope you are doing well. Can you update us on how you are doing? I've been thinking about you.

Syl

[klangel]

hi syl and everyone else there,  havent been on the computer lately for many reasons. my son has been staying in my computer room and i have had numerous doc appts too. not doing so great lately. have such severe jaw/ eye pain that it is debilitating. guess the trileptal isnt working for the jaw anymore.also finally got a doc to address my hep c and have to go for a liver biopsy mar 6. not real scared of that tho. not too scared of any procedure since the brain surgery. haha that kinda took the cake as they say! got my mri and ct scan mon. and tues and wed back to the psychiatrist. they had given me this new med and i had a terrible reaction so goin back. also starting counselling altho i hold no real hope i will try to keep an open mind ( haha no pun intended) funniest thing was i was getting a haircut today and went to a new place and turns out the lady who was cutting my hair has an an! wow! shes ok now except the loss of hearing and an occasional wonky head. they found hers by accident during testing for an eye procedure and it was only pea sized so she was able to have stereotactic radiation as treatment. it was rare and interesting to have met her tho because of the rarity. i thought it was kinda cool. and shell be cutting my hair from now on ha! anyway thats the update. will try to talk again soon but very tired from so much pain.oh and id like to ask btfollis who the doc from mountaintop that works in a scranton er is? im in scranton alot. i have a standing appt every fri at mercy hosp annex and usually have all my bloodwork and many of my tests done at moses taylor hosp. thank you everyone for all your encouragement. youve all helped me through alot and i appreciate it so much! love, kerri

[mimoore]

Hang tight Kerri... each day is a new day! Have hope...and believe things will get better.
I recommend a really good book that I read when I was really down. It is called 'Deadly Emotions: Understand The Mind-body-spirit Connection That Can Heal Or Destroy You' by Don Colbert. It is a bit spritual, but the message is really great.

I bought this book when I was very angry and depressed about my situation. I was pissed off at the world and pretty much wanted to curl up into a ball and die,  I cried a lot. I was happy when my 11 yr old went away to camp so she did not have to witness her pilar of strength falling apart. I could not 'shake it' as I was told many times to do.

So I  bought this book. Anyway a week later on a sunny day my husband pleaded for me to go on our boat with him. I reluctantly said yes. I brought my book to share a few things with him that I had read, I had finished it that morning. We had such a great day that I forgot to bring my book out. On the way home the book flew out of the boat onto the road while it was on the trailer. We didn't notice until it was too late. We went back to look for it but it was gone. Funny thing I never wrote my name in it and I always write my name in all of my books (teacher thing I guess). I wasn't meant to find it. I know in my heart that I didn't need it anymore.. someone else did. I am sure that's why I lost it. When I looked at it that way I knew I was getting better.

Onward and upward Kerri... talk positive to yourself this will help. I know it did for me.... seems like a bad nightmare because I feel so great now. Buy the book and let me know what you think. I'd send you mine but as you know someone else needed it. 
Hugs Michelle

[Jim Scott]

Hello again, Kerri ~

Good to see you post - but I was sorry to learn that you have more ongoing medical issues to deal with.  I hope and will pray that the counseling you'll be starting soon may be of some benefit to you as you certainly could use some useful, professional advice on how to emotionally handle the medical problems that continue to torment you. 

I underwent a liver biopsy (long story) prior to my AN surgery.  It felt a bit weird, sort of like what - and I can only guess - a baby kicking in the womb feels like.   However, it wasn't painful and all over in about 30 minutes.  You'll be fine. 

Finding a hairdresser that had an acoustic neuroma is certainly unusual as well as serendipitous.  I meet a fair amount of people and have only met one who also had an AN, and I knew her long before I was diagnosed.  She, too, had her surgery years ago and had some complications (mild facial paralysis) but married and has a full life.     

Thanks again for your update, Kerri, and please continue to keep in touch.  Your input is valued, here. 

Jim

[Syl]

Kerri:

Nice to hear from you, But I'm so sorry that you're still having a rough time. Good luck with all your upcoming appointments. Keep us posted.

Syl

[golden]

 
Kerri,
   Wow I just read your post and thought that was me. I had severe depression after surgery with all the medical conditions (I thought the Dr.'s got all of the tumor 3.7 c.m L side so now I will be back to normal in no time lol) that my surgeon started me on anti-depressents. I thought my life was never going to be normal again and I all I would do is cry and ask why me. I am a single mother of 2 children so I knew I couldn't give up but, I didn't know how to go on. Long story short I am 23 months post surgery and I still have medical conditions and last week I got to add a new medical condition to my list. In October a took a short term medical leave and decided I couldn't handle the depression with just anti-depressents any more. I found a wonderful individual therapist who is helping cope me with the emotional side of the AN ( I think that it is not only physical but, emotional damage that our bodies go through). I have learned that people take things in life for granted and until they suffer a loss like AN patients they won't understand what we go through.  I understand that my life will not be the same as pre- surgery but, it can be happy post surgery but, in a different way than before. In time you will come to accept the new you (I am still working on that) and the NEW LIFE you have.
Michelle is right go ahead and TREAT YOURSELF YOU DESERVE IT!!! I do and it makes me feel so much better when I do. I will keep you in my prayers. Staying connected to this web site is very beneficial. I find it to be a blessing that I know I am not alone and people here can relate to me.
Golden

[Syl]

Golden:

The post-treatment recovery certainly takes an emotional toll. It sure has for me. I'm 8 months post-op and don't accept that this is how the new me is. I'm gonna wait til my 1 year anniversary to evaluate the new me.

I'm getting treatment for headaches and am having such a difficult time. The meds have me feeling without energy even before my day starts. The neurologist says he's been very successful in treating headaches with Pamelor, so I'm sticking with it. But it's hard getting ready for work and making it to work. Somehow I manage to make it through my 8 hour shift. I hate feeling crappy all the time--sometimes worse than others--but I don't like telling my family and friends about it all the time. I don't want them to run the other way each time they see me approaching.

That's why the AN crowd is so important to me. You're so right in saying that you are not alone and people here can relate. That is why there is always someone willing to lend and ear and share some advice.

I hope that there are better days ahead for you.

Syl

[Pembo]

Just saw your posts today....I had vestibular rehab in Pittsburgh with Todd Henklemann. He is wonderful and a wealth of knowledge. I'm not sure how far you are from Pitt but he will talk to you on the phone. Might be worth a contact??? Stay strong...we're here for you.

[klangel]

hey there you guys, finally feeling a little better today. haha syl, the psychiatrist just put me on pamelor. hope it works for the depression and the headache. i call it my pamelor anderson haha. just add it to the list of meds! sorry to hear about all your trials golden. sounds like youve got your hands full too but it also sounds like youve got a good handle on it. ill be praying for you. i have a headache always but do any of you wake up every morning with severe hangover head even tho you dont drink? anyway ill be thinking of all of you and thanks so much for all your good advice and encouragement it sure helps keep my morale up! love and hugs to all. and im also gonna look for that book too!  kerri

[Syl]

Kerri:

The pharmacist told me that Pamelor isn't used for depression anymore. I guess he was wrong.

Syl

[wendysig]

Hi Kerri,

I haven't been on much because I've been preoccupied wth a sick friend.  Sorry to hear you are still having such a rough time but hope your pamerlor anderson helps you with your headaches and depression.  In spite of everything, it's wonderful to see that you still have hope -- it's a true testament to the human spirit!  You know we will always be here for you and even though it's been a while for me, you are often in my thoughts. 

It is amazing that you found a hair stylist who had an AN -- I'm glad for her sake that she hasn't had any major problems and happy for you that you found someone to talk to in person about your mutual experience once in a while -- I'm sure it will be good for both of you.   Keep haning in there.

Hugs to you,
Wendy

Syl - Sorry to hear you are having such a touch time with headaches and hope the doc manages to find something that helps without miserable side effects.  How are things going with Chatty Kathy?

Wendy

[Syl]

Wendy:
I've been wearing Chatty Cathy every day, all day long. I'm quite used to it now. I get the best use out of it when I'm outdoors going for my daily walk. Having a sense of directionality makes the walks so much more enjoyable. Without it, I must look like some paranoid drunk turning my head constantly in response to every dog's bark, gardening tool, and car engine while each turn of my head results in loss of balance. Can you picture that? Not a pretty sight.

I found CC is not as useful at work, especially now that my cubicle has been moved to much bigger room with some 40+ other cubicles and much more noise--lots of phones ringing, lots of people chatting, oh so much more noise. I get some directionality, but not like outside. I still feel I'm better off with it than without it.

Thanks for asking.

I hope your friend is doing better. You're a good friend, Wendy.

Syl