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[Dfcman]

Helllo all.  Sorry I havent been online much lately.  I gotta be honest with you, I'm trying to put this whole AN thing behind me.  I mean it was awful and I wouldn't want to do it again, but its ok now.  I really thought i'd be sufferering from Post-Traumatic Stress more.  I do sometimes, like I have flashbacks of being on morphine and crazy fever dreams with hot sweats and cold sweats.  Well not like acid flashbacks, but like daydreams. The tube going down my throat and stuff.   I dont really come awake in the middle of the night with crazy nightmares like that.

Well, like I said I want to put this whole thing behind me.  Like it never happened.  You ever see Eternal Sunshine and The Events of The Spotless Mind, where Jim Carrey wants to forget about his ex, so he has that part of his mind erased?  I wish I kinda could do that.  I actually try not to talk about it if I can.  Its not like its too painful to talk about, but I dont want to if I dont have to.  I obviously have to when I see someone I know in social situations and they ask me "if i'm still in school".  I kinda have to tell them why not.

I was given a release to go back to work.  Maybe 20 hrs a week.  I work as a clerk in a grocery store.  Not to brag, but i'm pretty experienced and do alot there.  I can load and unload trucks, build displays, bag groceries,warehouse detail and orgnaization, stock shelves, work in the dairy and I was even in charge of the freezer section before I fell ill.  I'm prob not gonna be doing all that b/c my balance is about 75-80% i'd say, not to mention a need to build up some more endurance.

Speaking of endurance, been trying to build up my endurance by going on my treadmill for about 45-60 min a night.  That treadmill has helped a ton with my balance.  Thanks Captain Deb for recomending that.  I can walk a lot more without holding on.  I seem to be going down steps a little better and better tooo.  I just hope it doesnt stop getting better.  My Dr did say it takes 6-9 months for the other vestibular nerve to take over completely.  Its been a little over 4 months so now is a terrible time to be at alll discouraged.
 
But yeah, going back to work.  That should be fun. I'm bored to tears sittin here at home not bein able to drive, watching movies and TV all the time.  I have to be busy all the time..just have to be occupied. I am gonna be sad missin passions tho  Eventhough I have to tell about a million people about it all.  Maybe I can mention there was a tube in every orifice of my body at one time.  That is not it!

[TaylorsMom]

Hi Chris,

   I think you are doing very well so soon after surgery.  I know Taylor has times she doesn't want to relive everything that's happened to her.  She just wants to go back to her life and be normal.  You sound like her as far as being bored and wanting to always be doing something.  Hang in there.

Kathy

[Crazycat]

Chris,

   Don't fret too deeply. You'll get it back. It's just going to take time. Take it from me. I got hit pretty hard myself: 5cm+ tumor with hydrocephalus to boot! Just keep moving and try to stay in shape. Physical fitness is of the utmost! I run at least 2 miles every day and weight train.
In 6 months time I'm going to be 50 years old! In spite of going through everything I went through and losing my left-side hearing, I'm working as a musician. Even though my left hand (handwriting and so on) is somewhat impaired, I'm still a stronger player (bass guitar) than most guys on the scene. That's because before my medical ordeal I was close to virtuosic level and have always been an extremely strong player.

  I'm taking some time off. I'm going to Florida from January through April to escape the winter. While I'm down there I'm going to get back into cycling as well as running. I used to bike 30-50 miles a day - weather permitting - before I got into jogging. Now I'm going to do both. Just going to have to be extra cautious concerning equilibrium difficulties.

 I know that you went through a great deal but the point I'm trying to make is that you're young and still have alot of growth and development ahead of you. Stay as active as possiible and try to stay positive.
You're only 22! Christ, I can hardly remember back that far! 

      Keep the faith!    Paul

[nancyann]

Chris,

What we all went through is a life changing experience.  I know I'll never look at things the same, & for me it's a good thing.
Makes you think about what's really important in life.
As the saying goes, what doesn't kill us makes us stronger.
I think it is much more difficult for you younger guys.   You've experienced something most people never will.

Keep the faith,  Nancy

PS: Didn't you have the 7-12 jump??  I may be having it in January,  remember, that will help lots with the facial symmetry, just takes time for the nerves to come back.

[Derek]

Hi Chris..

It is a real blow that you developed your AN at such a young age but thankfully you are now on the mend...you are coming along fine..just keep hanging in there.

Very best of luck with your ongoing recovery.

Regards

Derek

[Palace]

Dfcman,


Everyone is different but, I just moved into my "real bedroom" in the back part of the house.  We camped out front by the fire as, it has been in the twenties at night.........and sometimes that helps me get a migraine in the middle of the night, which I was doing.  Back in that bedroom, I have a new clock radio which shines on the ceiling and it has those calming choices of the ocean, summer night bug, birds, ect.  I have mentioned this before, that you people might like that for some stress-relief.  I took a Valium last night and listened to that.  Today is my sixth day from Stanford and my evergy feels like it is beginning to come back slightly.  Over-all I'm doing well, considering everything.  I wish you the very best from my personal heart.



God Bless...........Love,



Palace

[ppearl214]

Chris,

Do you know just how much we are all cheering you on?   You have been through so very much this year and 2006 has been real stinky for many of us... but know that 2007, you are on the road to onward and upward.  I am so tickled to see you write here, to reach out to us and know that we are all here for you.  Keep writing, write a journal if you can... and one day in the future, you will look back at all of this and just be amazed at how much you have endured but most of all, just how well you are doing.  I'm so very proud of you!

Hang in there Chris.  You are so on the road to wellness and we're here to help!

Phyl

[Dfcman]

Thank you for your replies

I'm trying not to fret too much about it.  I think the balance is getting better.  I seem to be doing better on the balance beam at therapy.  My PT named it my nemeisis.  I still have a really hard time walking on ice.  Like my sidewalk today, just ridiculous.  Like just getting my mail which is like a 30 ft walk was like walking a mile.  I think it honestly took me about 2 1/2 min each way.  But my goal too is to keep at it.  I'm gonna start jogging to I think.  I dont think I ever wanna be in the hospital again.

Yes Nancy, I did have that graft.  I think it was called a 7-12.  I know the procedure was called Anastomosis.

My mother also tells me that she thinks that I am recovering fast.  I guess thats one advantage of being 22 years old.  I mean its a god-awful thing especially at an early age(actually any age) but it seemed almost in a sense necessary.  It was like God was trying to teach me a lesson.  Not to take many things for granted.  People especially.  But yeah, life seems a lot brighter.  And I think i'd rather have something like this early in my life.

It prob looks a lot worse on the other end.  I guess my friends couldnt understand like my parents could.  Being barely able and too weak to speak,  with all kinds of crazy tubes in each orofice and some sort of line coming out of just about every appendage.  Which i'm sure several of you remember.

I still seem to have many mixed emotions.  Like I said, I was bored to tears and i'm glad that I will have a social existence again.  The people throughout my treatment(inclduding this forum)  were SOOO nice.  And I really emphazisize that.  The people in my outpatient rehab are so nice.  I actually got Access to pay for more sessions, cuz I was supppose to be done.  And they still show my continual improvement.  I'm worried that once I get on the outside world again, things may not be so nice.  I feel in a sense returning to reality.

[nancyann]

Hi Chris.

I can't believe you're walking on ice! I'd be doing a butt walk the way my balance is.  Where do you live?  (I'm in Miami, went down to 60, we're cold).    Anyway. 

When I went back to work, it was uncomfortable at first, people were looking at me (& still do),because of the asymmetry in my face.
It was hard, seeing people I've worked with a long time, some people didn't know what had happened, etc.   But after awhile, it got easier,
& now I love working ( yeah, right, I'm just glad I've got a good job with good people).    It took me about 5 months to understand what happened, accept it,
& finally, know that  'life is good', I'm happy to be alive. Taking a look again at my passions, things I've loved since I'm a kid.   We've got our whole lives ahead of us to enjoy.  " It's a wonderful world" (Louie Armstrong, I think - help me out guys if I'm wrong & I'll change it).

I have time to think about facial reanimation in the future, it will depend on how hypoglossal anastamosis goes (what you had. after repeat EMG), if it brings back enough animation to make me look 'normal' again.

Keep a peaceful heart, & a child's spirit, Nancy

[Dfcman]

Yeah Nance I live in Pennsylvania about 70 miles North of Pittsburgh.  But yeah, Ice?  no es frio not cool.  My mother claims she sees some tone in my face.  I dunno...maybe.  Its only been 6 weeks.  My doctor said 9-12 months, but I heard some people have movement in like 3-5 months.  So I don't know.  I used to say "as slow as molassses" but I guess "slow as nerve generation" would be the new one... I don't know, thats not really funny.

But yeah, you were mentioning the facial asymetry.  Its not really that noticeable for me.  I can tell my lip looks a little uneven though.  My friend told me when I asked him, that it really wasnt that noticeable.  He said if you really look it just kinda looks like I got punched in the face.  I dunno, he's pretty honest about things.  He told me "maybe a lil" when I asked him if I gained weight, since he'd seen me in the hospital.  He's a good dude though.
 

[nancyann]

Hi Chris,

Slow as nerve generation IS funny !!  (we can make nerve jokes all we want, we've earned the right!!!).

A girl I worked with in Maine once said to me  ' slow as molassas going uphill in the wintertime' ( funny you mentioned that phrase, reminded me of Freda)

Anyway, I bet (know) because your 22 y.o. your skin tone is alot better than mine ( you stinker) so the paralysis isn't as noticeable.

6 weeks is a short time out since the 7-12.  Be patient with the results, but you obviously know that already. 

Oh, the weight problem...  your still young yet!!!   You can take off the weight whenever/if  you want, it's a breeze for someone your age.
At my age, 50, (& most on this post, I'm sure), taking off the weight isn't as easy !!!!   lol

With warm regards,   Nancy