It's been 2 days since my little go around with the pain center (who treated me as though I am drug fiend of some sort) I go to till the 28th of this month. It's been a hard couple of days but as I have said I won't beg for pain med's and since all this has transpired I've tried to keep a level head with the world around me.
My youngest daughter (6 years old almost 7) come up to me just before bed last night and said to me "Daddy I love you and miss you" My response of course was what do you mean honey? " I know you have been hurting because you always seem like a different daddy when your hurting " I couldn't do anything but hold (cry for a moment) her and apologize and tell her I will work on being the daddy you are used to and yes daddy is hurting. Amazing how children that live with a parent or parents in our case that deal with pain day in and day out become so in tune with the way that pain effects either one or both of their parents at such a young age. I have to give her credit were credit is due her brother and sister (which are much older 25 & 21) never had to deal with anything like what she has experienced because we where so young and in much better condition then. As I have stated before I'm looking forward to the SCS trail for the simple fact to see if I maybe can get a little part of my life back from this monster! that has consumed a large chunk of my life and who has also has stolen my little girls Daddy from her when it decides to rear its head . I might be but a shell of the man I once was at this point and time in my life but I REFUSE to be beaten by something that can not been seen or that messes with my little girls childhood. She shouldn't have to understand how debilitating pain can be at such a young age. She should be worrying about if her friend down the street is going to be home tomorrow and be able to play so she can also show her that she to has lost her front tooth (which did happen last night of course right before school starts ) Anyway after last night I have adopted a new mind set and a new persona of a monster slayer no matter how much it hurts I'm going to purse this monster that lingers in the dark. I will hunt it down and slay it for the sake of my little girl.
I know that an scs device may not take away all the pain but if it can reduce it so my little girl can grow up with a father similar to the one her brother and sister had then by all means where do I sign one the dotted line ?
Messy Mark ©

Behind you I would like to sign up too

someone who cares

I don't understand pain management. They divvy out our drugs to the exact number we need, and if you call them for any reason, you're a drug seeking freak. For example, I have full body rsd and fall. A lot. I fell on the stairs of my daughter's meet the teacher Thursday night. I wound up fracturing my ankle. Well, that's acute pain that doesn't really get covered by my scs. I have a contract that says I can't accept pain meds. I just grin and bear it. I should have been in mywheelchair and learned my lesson, but sometimes you just want your kids to remember something besides a parent who hurt or was too tired to do anything all the time. My kids and I used to run 5Ks together. Now i can barely keep up with them. It does get frustrating. I was doing great until April, then things went downhill very quickly. I'm slowly building back up, but days are definitely hard. Anyway, I hope thishelpsto know you are not alone. I hate disappointing my kids!!!

TK

How right you are, Mark. What we deal with certainly does affect the rest of our family. I battle guilt a lot. Things like, I can't even cook a full meal for them without spasms kicking in so bad that I have to go to my room to lay down for 10-15 minutes. I'm SO very thankful that the Lord brought me a wonderful husband.

I really like the way you responded to your daughter, Mark.
It's plain to see what a loving father and husband you are.
I admire your determination!

Rae

Children know. They are in tune with us right down to our souls. You cannot fool a child either. My own two, lived with a mom who had pain too. My son grew into an OPT. and has great compassion. Fight for your life Mark, your attitude is wonderful! ginnie

My son is almost 13 and he always asks how I am doing every day, no matter what. My daughters do, also. It's just great to see a boy that is caring and compassionate as well.

I agree with everyone. I have been upfront and honest with my kids, especially when I have a bad day. I have pushed myself too hard sometimes to be at every single function. I just can't bring myself to miss anything.

I have paid for it, but it is a small price to make the kids happy. They lost their dad, so I feel I owe it to them.

I know I push myself too hard, but I am not sure how to stop myself lol

TK

TK
You do because you love
and know how blessed we are
to be a mother
I LOVE BEING A MOM
My children hit 30ees
This is when they find out
who they are the mistakes they
made
They still value my opinion
And then there is my 15 year old daughter
who will be repeating freshman year
It is not my wish my children harmed
in ways of addiction and trying to beat it
A child epileptic at 32 found how to live with
it a poetry slam master
A child 30 addict who found his way out of it
Bipolar hates the Med
And the my 15een year old who asks me
every single day how I feel too

Blessed we are
Are we not