AH HAH moment

[Soundy]

I was grumbling the other day from just being tired and down and ready to get on with my life ...

But I was thinking last night  (really about 2 this morning ) and have analyzed myself... I know you
should probably get professionals to do that but none were available   

Any how ... How many of you as a child ever wanted some toy or item so bad for Christmas or your
birthday that it consumed you ... you lived and breathed just to get that one special thing... for me it was
Christmas 1970... Dancerina ballet Doll ... I wanted her more than I wanted to breathe thought I would
die without her... you could pose her legs and arms and hold on to her crown and hold a button and
she would spin on her toes ... Christmas morning  came and at about 4 I crept with my brother down
the hall and with a pen light , investigated and there she was ... I had to go back to bed as we were not
allowed to get up til 6 ... at 6 I woke everyone and tore down the hall to claim the doll...
I was the happiest child in the world... and a few weeks later she was collecting dust as I moved on to
something else ...


Back to now ..........

I have heard from the doctors and therapists to give things a year to heal and then worry  ... I think at some little
place in the back of my mind , I believed that the same way I got my doll I would get my wish to be
headache free and normal ( not that I was normal before but the doctor kept saying things would go back
to normal ) again ....

When it didn't happen I felt kinda like I did something wrong and so didn't get it ... the same way that if I had not
gotten the doll I would have felt like I had been bad and so didn't get it ...

I have found a peace with myself that this trip though longer than I anticipated will be over ... I will get better
but right now at a slower pace than the first few months of recovery ... I have friends and people around me
that are both negative and say stuff like I should never have had surgery if it was going to be so disrupting to
those that stand by me in my decisions ... have to ignore some and embrace the others ...

So what if I can not balance and ride my bike ... I can skate and as of yet have not broken anything ...

And who really needs chocolate and coffee ? ... two things that really taste bad to me now... I know I know
Chocolate is a food group in it's self ...coffee probably is too ...

We got a little movie theater two years ago ... woooooooooo hoooooooooo ... tiny town and the little college here
turned an old lecture hall into a 200 seat theater and we get first run movies... I know that sounds small to alot of
folks but here in hicksville it was something...

but now the big screen really bothers me and I rarely take the kids because of the after effects... have learned if
I con my husband into going  (he is not a movie person) I can take a pain killer and watch movie without getting
a headache...tried just Tylenol and it didn't hold headache at bay ... the screen is just so big and I feel like it is
tipping toward me  and swaying around  ... but  who needs to go to movies... we have pay for view capability
on satellite but have used it only twice in the past 5 years ... we have several hundred DVDs ... but I miss the
big screen and the smells of popcorn and the atmosphere of the theater ...even our little one

I watch our herd of cows from afar now ... I do some work... mostly filling syringes as we run them through chutes
to vaccinate them...just have to stand there handing stuff back and forth in that job... but my days of cutting the
calves from herd to either put in fattening pen to grow a beef or to put in sell pen to wean and take to market 
are all but over ... I worked a pen of 500 -600 pounders a month or so ago and stumbled around without injury
but was not comfortable with it ... getting out in the middle of a herd of 60 or 70  , 1000 pound animals could prove
fatal and not worth it ... but my lack of ability weighs on me and makes me feel useless ... but the job gets done ..
my girls almost 9 and almost 11 fall in and take up my slack ... and for big  jobs my husband gets my grown
sons over to help ... I guess I have been retired and put out to pasture ...
I remember times especially in 100* heat or extreme cold or in the rain wishing I was anywhere but working
cows and now miss it with the same intensity ... but it is OK... the farm has not collapsed without me ( I was secretly
wishing it would at least falter a little  ) and I am getting a break and one day I will get back to doing more ...
but right now I am selfnamed the suoerviser... I can still sit to the side and bark orders ...

My life is quieter now ... I am still super busy and don't have time to do alot of sitting around...I have Cub and
Girls Scouts to meet with ...I ran a Day Camp and survived it ... my house is clean , I have food on my table and a
book (several books  )  to read when sleep won't come ...  people tell me I need to slow down in my
condition  ... I have slowed down alot ... but not enough for many friends who worry I am over doing ... and
my husband who is constantly telling me to go rest whether I need to or not ... comes home and first thing he
asks if have I had my nap ...

I am not the same as I was a year ago... somethings I know will never be the same and that is OK... I  will adjust...

I just realized that my little melt down over the year anniversary was kinda like a temper tantrum of a spoiled child
that didn't get what they wanted ...I wanted normalcy ... then realized I have it ...my new normal ... I am doing better
than my doctors predicted but that was not good enough for me ... I wanted more ... but I am being made to wait
and work for it ...and that will make it all the more valuable

I was reading a thread on a private board I belong to , that I started when I learned I was going to have to have surgery...
friends added their thoughts and followed along with my trip from waiting to scheduling surgery through the surgery and up
til today... I read the whole thing ... daily accounts of what was going on from headaches on bad days that made me cry
to good days where I took the girls to the mall ... depression that had me sulking and overjoyed feeling I got from being
able to stand on skates (something that prompted about 20 messages telling me to take off the skates and sit in a corner  )
it has been a roller coaster of a year ... but I have came to a big conclusion after reading 180 pages of what myself and
friends had written since last April when the tumor was found to have grown at a super accelerated rate and that surgery
was now a must ...not something years down the line ...

I am OK...

[Omaschwannoma]

Thanks for posting your heartfelt story of one year post treatment.  Sorry you experience the headaches as I too had the same problem with no help from the "specialized community" and so began my three years post treatment of more torture.  At one year I too wondered "where my gift was"!  I was told all will be well six weeks after as a prior patient of his was doing so well they returned to their job flying commercial airline!  Well, what the heck was wrong with me then?  What did I do wrong or not enough of?  Did I make the wrong choice in treatment?  My husband thought I should opt for radiation therapy in the beginning days of our AN journey, but my gut told me surgery.  Those were my thoughts and they continued for three years while I went down hill visiting more than one specialist with no answers.  Again, I was tortured like I was 12 years prior from all the specialists I went to during those years trying to figure out what's wrong with me.  It wasn't until I went back to my surgeon desperate for an answer that the problem was found.  Relief came with another surgery, thankfully!  I do well today and hopefully what I went through doesn't happen to anyone else due to misdiagnosis from "specialists"! 

Cheers Soundy!  Here's to better days!

[Jim Scott]

Soundy:

Thanks for the poignant account of your AN journey and the many emotions you've experienced; from joy to sorrow to regret to frustration to, finally, acceptance.  Even though we always emphasize that every AN patient's experience is different, I trust that many of our members will totally relate to your roller coaster ride of emotions and not only understand but have complete empathy with your situation and appreciate your comments.

 I think you really are O.K. 

Jim

[Debbi]

Soundy-

Your post touched me in so many ways - thank you for sharing yourself with us.  As I was reading this, tears came to my eye (only the good one, of course ) and a smile came to my face (only the functioning half, of course.)  I felt as if I could have written some of it myself.  I am only a few months into this journey, but you captured some of my own feelings better than I could have myself.  The picture I have of you is of a very brave woman who is going to be better than okay. 

I am sending you a big hug.  Thank you.

Debbi

[krbonner]

Your courage and strength shine through in your story.  The road may be rocky and not what you expected, but it sounds like you still have many great things you will accomplish in life!

Katie

[Soundy]

Talking to a friend the other day I realized something (really she kinda told me ) that I didn't give myself
permission to feel bad and was trying to be up for everyone and was wearing myself out ...
made some sense when she pointed it out ...

My almost 9 year old dressed up yesterday in her backless "prom dress" that is made for her age but not something I
expected to buy for her until she was in her teens... too grown up looking for me

I told the girls about the tumor about 2 weeks before surgery and  they were worried and scared but excepting ...
she asked me what would happen to them if I died and I told her daddy would be there... they have grown up watching
an aunt die a long slow death from complications of CP and a virus she got that damage her nerves to the point
she was bed bound for 7 years... they like most of us were relived when Kathy's suffering was over last March...
so death didn't worry them so much because we have discussed it since they were young ... they just
wanted to know they would not be alone

Then tearfully she asked if I was gone who was going to shop with her for her first prom dress because I was
suppose to do that and daddy doesn't like clothe shopping... so a week before surgery we went shopping and the
girls got too grown up dresses than what I would usually let them wear and shoes to match... hers is a black and white
geometric retro print with a scarf hem ... when she turns it billows out around her... the oldest got a more traditional
turquoise dress ... she is a big tom boy and doesn't do dresses but did to appease her little sister
we dressed up and went out to eat ... making memories ... she later got a black shrug and did wear it to school for
an awards presentation and it was fine ...

Looking back this has really been a good year when I look past the things I can't do or have to do differently... I
just freaked out a little but I feel like I am back on level  ground even if it does seem to be rocking
under my feet...

Something my doctor told me before surgery is that many patients about 4 to 6 weeks out go through a crisis and
depression ... I didn't and waited a year and so it hit harder because I was not expecting it ...

Still things to get taken care of medically including BAHA and headache treatment so maybe I can get off the 
high doses of Tylenol  and occasional hydrocodone I swallow daily to function.... but life is still good ... I just had to
hit bottom to see it

And I want to thank everyone here that supply support , information and humor for all of us  on this journy...you
will never know how much I have needed this place sometimes 

[Debbi]

Your friend is very wise - we all need to give ourselves permission to experience whatever emotions are there - good and bad.  Part of learning how to deal with my own crummy days is that I've realized that we all get them.  Your daughters are very lucky to have such a wonderful mom and role model.

hugs to you.

Debbi