We did a bad thing

The memories and thoughts of my Dad seem to come so easy this time of the year.  I find myself remembering special moments from years ago and more recent years.

There is a lady who does Christmas baking at work and she made cuban lunches and brought to share.  That was my Dad's favorite chocolate bar.  I remember being in checkout lines with my Dad where the cuban lunch chocolate bar was added to the groceries.  While they are no longer at the stores I can clearly remember the moments with my Dad.

Another fond memory I have is of the tradition my Mom had each Christmas of making Poppycock.  This was one of my Dad's favorites during the holidays.  Mom used to make a huge batch and then put it in the shed outside to keep it frozen until Christmas Eve. 
My Dad and I used to sneak to the shed and sample the poppycock.  We made several secret trips to the shed for the sampling without my Mom's knowledge.  We obviously didnt think this plan through as Christmas Eve came and when Mom popped the lid off the poppycock she saw exactly what we were up to.  She asked both of us what happened and  my Dad very simply said " we did a bad thing". 

Loving the memories and going to make a batch of poppycock in his honour this weekend.
I Love You Dad!



It is..

YesterdayI noticed my two toes on my right foot were numb and tingly like my hand. 
Really? 
I have already conceeded to the numbness, tremors and lack of coordination in my right hand.  I am not willing to give up anymore.  I understand that the numbness and tingling is not as physically dibilatating as some of the symptoms can be but because it is constant for the past 22 months I have not been able to forget there is something wrong with me. 
In the beginning it was a constant thought and worry of "what could this be?"  After I was diagnosed it became a constant reminder of what I have. 

I havent forgotten for a minute that I have MS.  Aside from the bladder issues, the tremors, spasms, numbness, tingling and fatigue I have reminders every day of my disease.  I am waiting to move my Mom into a nursing home due to the fact that she has MS and her last attack has made her unable to move her legs.  I am reminded each Sunday night and Monday when I am enduring the flu like symptoms from my injections that I have MS. 

I did the right thing, remained calm and tried to destress and rest.  Today I woke to a lesser sensation of numbness and tingling.  It is what it is, but thankfully what it is today is better.

It's a Wonderful Life!

I woke up this morning with a burst of positive energy. I had a day off work today that wasn't because of the side effects from my needle.

I am smiling thinking about how wonderful it was sharing breakfast with the kids this morning. No rushing to get out the door, but enjoying the morning moments. After I dropped the kids off at school I heeded the advice of my friend and exercise instructor and took care of myself. I went to the gym.  No matter how busy life gets I have to take care of myself and the gym is one of the ways I can do that.

I am also getting caught up in the holiday excitement. Planning ways to make Saturday special for my Mom, wrapping presents, preparing care packages. I love listening to the kids sing Christmas carols and shaking their presents and trying to guess what's inside.

What's wonderful about this life is that my children don't care if my hand can't wrap a gift as nicely as it used to, or write their names on a gift tag. They don't care that I walk a little slower or leave some of the clutter in the house. They love the wonder and magic of Christmas and they are a perfect reminder that while Christmas is a wonderful time, every day is a gift and I plan to treasure each one.

Family

 Being a family means you are a part of something very wonderful. It means you will love and be loved for the rest of your life. 

My family has been on my mind a lot lately. Another Christmas without my Dad is approaching. My Mom is moving into a nursing home. My oldest has gotten a job and has let us be more involved in his life.

I know if my Dad was here the transition to the nursing home would be easier for my Mom (and for me). I didn't realize the strength I drew from my Dad until he wasnt here anymore.  His quiet strength  and unconditional love is very much missed right now.

Saturday my family is going to Melville and taking Christmas to Mom in the hospital. I want to make it special for her. I want to show her how loved she is and maybe take a little of her sadness away if I can.

All 4 of my children will be there for our Christmas with Grandma and regardless of where we spend it, it will be with family and surrounded by love.  That is something wonderful.

Failing

I feel like I am failing in almost every aspect of my life.  My health, my marriage, my work, my children, my home.  I'm treading water but keeping my head above water is getting harder and harder. 

I still attempt to do all the things I did before I returned to work full time, the only difference now is that while I am doing everything, Im doing everything poorly.  I am not the happy positive person that I was.  I am desperate to prove (if only to myself) that I can do this.

If  I admit I can't do full time work then that's acknowledging that my MS has taken something else from me.  I dont want to give up anymore to this &*$#ing disease.   



Not today

Today I was angry. Today I was sad.  Today I was mean. 

Today I was embarrassed to admit I treated those I loved badly. 

Today I wanted to reassure those I loved that on my bad days I still love and need them very much.

But instead every time I tried only mean and hateful things came out of my mouth. 

Tomorrow I am going to try harder to love and be loved, to be okay. 

Base Line

I don't want to inject the avonex. Not today, not next week and not ever.
I'm tired of the side effects and I can easily come up with a list of reasons why I could miss the injection. The excuses are easy to supply. But just as easy to think of are the issues I deal with constantly on a daily basis in regards to my MS.

Today I suffered the painfully cold hand that felt like knives were cutting my hand and left my hand bright red and painful for a long time.  I've been suffering with increased numbness and lack of movement in my right hand as well. Abilities that I regained after my first attack have been taken away. And I am saddened by the fact that I took them for granted even after I promised I wouldn't.
Simple tasks like doing my hair, brushing my teeth, starting the car, writing, are no longer simple for me. How did this happen?  What could have I done differently?

I have spent the past several days thinking about an MS patients 'base line'. My Mom recently had an MS attack and was given solumedrol. That was a week ago and she is still unable to walk and use her legs. Is this her new base line?  Just like that she is no longer able to live in her home alone?
Do I need to live like nothing is a given?  At any moment I could be like my Mom and lose the ability to walk, have a permanent catheter, have a right hand that is completely useless?  Each time her base line slid down did she mourn what she lost and promised that she wouldn't take anything for granted?

Making Memories

Bob and I are on our flight back from Las Vegas with our friends. I am excited to get back home to the kids, but again this holiday was such a wonderful time with so many memories. 

I think of the years before my MS. I didn't take the time to make the important memories. We had the opportunity and the means but the list of important things in our lives were different. 

Then my Dad died the year he turned 60. The death was unexpected by everyone, I'm sure that included my Dad. I had regrets and sadness because of the memories and moments I missed out on making with him. 

Then a few years later I was diagnosed with MS.   

Why does it take something like death or the diagnosis of an incurable disease for people to understand what is truly important and to live without regrets?

I don't want 10 years to pass and have regret for all the things I didn't do or the bucket list I didn't get to. 

I want to grow old and look back on the memories that made me smile, laugh and love. This was one of those memories.