Ups and downs of recovery--I'm venting, just warning you

[bell]

Hi Marcie,
I am sorry that you are having a rough time.  One day at a time, is how I am going to try to cope, when I have my surgery the 21st.
I think I  know what to look forward to post-op and I am trying to be prepared.  So..  look on the bright side, that your information is good for me.  You are helping me already trying to prepare.  Does that sound weird?  I wish you the best of luck for tomorrow, hopefully you will feel better and have alittle more energy.  I am worried about going back to work because I am a flight Attendant so we will see..sleep tight and say a prayer,
Bell

[Pembo]

Marci, Your vent post sounds like you are right on track with the emotional recovery. I remember those early months oh so well and I wanted to just slap all those that said "well you look good" as if that mattered to me!

Not sure what to say about your pain, I have facial weakness and numbness. I did travel to Pittsburgh to a facial therapist at UPMC. He was wonderful. If you want more info PM or email me. He might have more advice for you. My one complaint with Dr M is the follow-up on symptoms after surgery....I have always felt he wasn't that concerned.

Stay strong, read up on the cycles of grief, allow yourself to grieve and plan a trip to somewhere warm and sunny...this Ohio weather gets us ALL down.

[MAlegant]

Today is a better day (thanks to all for asking) but I'm still a bit of a mess.  I just keep running in the hope that exercise cures all.  Went to a party last night and my balance (which for some strange reason has been fine until now) was terrible.  But I was at a party with a bunch of brass players (musicians) so they just thought I'd had too much wine!   

I'm off to run in the snow and then go to my Italian lesson.  Very frustrating because my formerly flawless diction has given way to a mouth full of marbles, but oh well. As long as I can avoid the letter "r" I'm good.  By the way, it seems that every word in Italian has the letter "r".

M

[Debbi]

Hi Marci-

I read your post and thought - I could have written that myself!  I have been posting up a storm on my blog for the last week or so, trying to work through my own "down spell". 

I think part of it, for both of us, is that we are both having ongoing and chronic pain problems which aren't visible to those around us.  It starts to feel, after awhile, like you are carrying this invisible boulder around with you.  And, you sound a lot like me in that your first response when people ask "how are you?" is to say "oh, I'm coming along really well".  I always think that no one really wants to hear my complaints about how parts of my face are still numb while others are so sore I can barely stand to touch them.

You may relate to this - a couple of weeks ago a friend of mine (who doesn't live nearby and hasn't seen me in the last six months) said that she'd seen the pictures on my blog and "you are doing much better than you seem to think you are."  The top of my head nearly blew off!!  All I could think was - you haven't spent one second in my head, how could you possibly know how I really am.  Wow, did she hit a nerve!!  Literally. 

So, Marci, have your pity party.  You know that you can't spend too much time there, but you also know that you have to acknowlege and honor ALL of your feelings.  And, I just want you to know that I really do understand how you are feeling.  Big hugs to you.

Debbi

[wendysig]

HI Marci,
Doesn't almost eveyr word in Italian have an "r" in it?  Sorry, that was the first thing that came to mind when I read you post.  Sorry to hear balance problems are popping up at this late date, hmmm.  I have some wonderful exercises you can do.  If you want I'll type them up and send them to you.  As for how you're doing emotionally, it sounds like you're finally feeling everything you didn't have time to feel before your surgery and it is a kind of grief for the things your tumor took from you.  Let yourself go through the process and we will be here to support you.

Best wishes,
Wendy

[texsooner]

Marci,

It looks to me like you are always positive even though you have issues. Like others have said to me, you are still relatively new in the recovery process. I know it's much harder to practice patience than to talk about it, but that's what we have to do. I too have the balance issues at times when walking, but fighting thru it.

You are much more hardcore than me with the running....I don't think I could run in snow. I just ran a few miles here NW of Houston(45 degrees), and I thought that was really really cold. Keep running...you're an inspiration.

Patrick

[konnie]

Hi Marcy
I  just went back to work for the first time this week.
you are just a few weeks ahead of my surgery date. and went back to work way before i did. You have to give yourself some credit.
I too like reading your post you are a very positive and inspiring person.
I think we forget to give ourselves  permission to feel sick or upset, we do try to be there for others and put ourselves last.
Remember you had brain surgery and this is normal for you to feel this way.......
You to will pull through this, in the mean time we are all here for you like you have been for us....
Konnie

[yardtick]

Hey Marci,

I wish my arms could reach you and give you a hug.  I feel your pain literally.  I went to a wedding Friday night.  It was a co-worker who got married, it was a lovely wedding.  Most of my co-workers haven't seen me since I went off in April.  Everyone told me how great I looked.  I joked it took me three hours to get ready.  Actually it did, because I really wanted to look good, so I took my time.  From smiling and laughing for about on hour straight my face really started to act up.  I dance a few dances with Louie and sat the rest of the night.  I enjoyed seeing everyone, eating a wonderful meal, dancing a bit, listening to the music...it was loud and just people watching.   

Facial pain and headaches can be debilitating, I now this first hand.  Emotions can get in the way, mine have.  One cannot go through this roller coaster ride without being effected.  I admire those who just bounce right back, but I feel deeply in my heart for those that do not.  Patience is a virtue so I've been told since I was very young and in my late forties I still haven't required that virtue.  What I do have is passion and compassion.  I want you to know that you can vent any time you want.  I now all about the up and downs of recovery. 

Many hugs, my surgery sister,
Anne Marie     

[MAlegant]

All,
This forum has a way of wrapping its arms around a person in a virtual hug. It feels like the best possible medicine.  Thank you. Each of you are appreciated more than you know.  Today is a better day than yesterday so maybe tomorrow will be as well.  Here's hoping!
Marci

Ciao, amici

[yardtick]

By the Marci,

I so much want to hear you sing, especially with the Christmas season is upon us.  Any suggestions?  I'll give you my good ear

Anne Marie

[MAlegant]

You know Anne Marie?  It's funny that you mention that--today was the first day I actually sat down, practiced and then sang through something with Brian (yes, I married my pianist).  I was thinking of which Italian aria I would work on for the forum, so don't worry, I haven't forgotten.  It's been difficult to sing with proper diction but it will come along and I WILL post an aria (or at least part of one) for you to hear.  Just don't let anyone blackmail me with it!
M

[Debbi]

It's not an aria, but could I request Ave Maria?  Either version?  That to me is one of the most beautiful songs ever written.  One of my best friends (who trained in opera) sang it at my wedding and it really was so special.

Debbi

[yardtick]

Sounds wonderful to me!!!  I cry when I hear that sound.  So much emotions.  It was sung at my mom's funeral 40 yrs ago, my wedding 24 yrs ago and at my father's funeral almost 16 yrs ago.  Let's not forget at every Mid Night Mass.      SNIFF.....Sniff....I need a kleenex       Tears of happiness!

Anne Marie

[Debbi]

Sending you a huge hug, Anne Marie!  Make al lthe tears come as tears of joy...

Debbi

[MAlegant]

OK you guys, Ave Maria is really hard to sing well, but if you want it, you can have it.  Which version?
Marci