Hustle and Bustle

This is the busiest our schedule has been since I had my first MS attack. I am concerned that the busyness of our lives is going to cause me some problems, but there is a silver lining in this all.
Because we are so busy I don't have time to give the CCSVI procedure too much thought. I don't have doubts this may be the wrong thing to do. But knowing you are making the right choice doesn't ease the fears and anxieties. There are hundreds of what if's I run through my mind when I have a few moments.
The hectic schedule means I'm still feeling well enough, have enough energy and too busy to give into those what if's.

Next Sunday when we arrive at the airport the hustle and bustle will be gone. That's where my wonderful husband is going to play a huge support role in this. He is going to keep me calm and reassure me that this is the right thing and everything is going to be ok.
Then Thursday after we get back the hustle and bustle can resume. Until the I will pray this procedure makes a difference for me and my fight against MS.

Deck The Halls

Christmas is quickly approaching.
It feels much quicker because of the hectic schedule we have over the next few weeks. With a ringette tournament out of town this weekend and another one next weekend, Austin's birthday, and the 4th Bob and I leave on our CCSVI trip we decided to put up our artificial Christmas tree this week. The little kids are very excited and look forward to decorating it with all the special ornaments we have collected over the years.

I took it upon myself to set up the tree today. Doing the prep work of arranging the branches and plugging the lights in isn't the part the kids usually get excited about. But I do. I found myself anxious to put a little more holiday spirit into the house.
I had forgotten for a moment that this was my first Christmas with MS. As I put the tree together and manipulated the branches I was quickly reminded. My clumsy and almost useless right hand is frustrating for so many things. Putting up the Christmas tree is just another one of the many things.
As I was decking the halls I starting think about wrapping gifts, writing out cards, using scissors to cut the paper, putting on the name tags and bows. These are things I can't do, or if I do they will look nothing like they did last year or the many years before.

Over the past few months I have accepted what I can't do, but each day I'm reminded of a new thing that I can no longer do like I used to I get so sad. I know I need to focus on the things I can still do and be thankful for them, but right now I need a few moments to be sad for what I can't do anymore.

Different

After my previous post where I wrote all the things that would be different if I didn't have MS I became acutely aware that I am very different from the person I was last year.
The one year mark is quickly approaching and I find it hard to believe it has almost been a year since I woke up with a numb thumb. It wasn't really that memory that sticks with me though. At that point I was still naive and believed it was nothing. The first AH HA moment was a few days later when I was standing under the water in the shower and I realized my entire upper half of my right body was numb and tingling but as soon as the water hit the left side it was normal. At that moment I knew this was something bad. Really bad.

I have one more vivid memory of my initial symptoms. This too was before I had my official diagnosis. But this memory sticks with me because it was the first time I realized how completely powerless I was to whatever was happening to my body. The first time I experienced what many refer to as the MS HUG was terrifying. How can the damage to my nervous system make me feel like I have an extremely tight girdle around my ribs. So tight that I couldn't catch my breath? Could my body really do that to me? And at the same time I wondered for the first time what the future held for me.

I'm a different person than before I knew I had MS, but more importantly I'm different today than the person I was in those first two painful memories of my disease. I am no longer controlled and overcome by my fears. I know what I have, I know what I can't do anymore and I listen to my body. I only hope that my life is not much different in a year from today because I like where I am.

If I Didn't Have MS

This morning I'm indulging in the little game!"How would my life be different if I didn't have MS?"

I think about how productive I would be at work. I would be working full time. Typing and writing like a fiend. I would be able to punch numbers with ease and without mistake on the phone and keyboard. I would be involved 100% with the daily goings on amongst my coworkers in the office. It has been so long that I find it hard to recall the positive attributes that I used to bring to the table as an employee.

I think about the carefree attitude I would still have. My entire life and the way I look at life and how I live has changed so much. I remember a few months before I had my first symptoms of MS show up I was on a winter holiday in Cancun. I am so thankful for that holiday. While it isn't going to be my last holiday it was the last one I took where I didn't know I had MS. I layed by the pool and on the beach completely relaxed and content with my life. There was no fears of what the future would bring, no constant thought that I have an incurable disease.

If I didn't have MS I would feel both my hands and all 10 of my fingers each morning when I woke up. If I didn't have MS my fingers would move the way I want them to without trembling. If I didn't have MS I would feel the painful sensation of needles in my hand and wrist. If I didn't have MS my right leg wouldn't give out from under me. If I didn't have MS I wouldn't suffer flu symptoms every other day after my injections. If I didn't have MS I wouldn't have red bruises on my stomach and thighs from the needles. If I didn't have MS I wouldn't feel the insane itching on my neck each night. If I didn't have MS I wouldn't go to sleep at night with the tremors and spasms in my right arm and awake to an aching tightness in that same arm every morning. If I didn't have MS I wouldn't have episodes of dizziness and loss of balance.

If I didn't have MS I wouldn't live with the uncertainty and fear of when the next attack will come and how bad it's going to get. If I didn't have MS I wouldn't wonder how many more years of walking unassisted I have.

There is a lot about my life that would be different and better if I didn't have MS, but I also have to acknowledge the good that has come from from the fact I have MS.

Because I have MS I am thankful for my good days, my healthy and happy family, my supportive family and friends. Because of my MS I appreciate the things I haven't lost or that I have regained.

Because of my MS I try to live in the right now and enjoy each moment.

Thoughts that count

I picked out a card for a dear friend this weekend.  As I read this very fitting card I thought about some of my dearest friends I realized I need to share these words with more than one of my close friends.

For many months I have been selfish and very absorbed with what was going on with me, but recently I had some very dear friends open up and share some of their challenges.  While it breaks my heart that they are going through these hardships I realize that it isn't all about me.  Everyone is faced with hardships, but its when you share these hardships with those that love that things get easier.  I also realize that these girls are my true friends because they have the brutal and open honesty that I love.  They have unconditional support as only true friends can. 
It is very hard to put yourself out there, expose your faults, voice your fears.  Each time I have done that to these friends I have gotten nothing but love and support. 
This is the card I am sending to my friend, but I am also sharing the words with the rest of my FOAF friends so they know they are loved and not alone.

They say what doesn't kill you makes you stronger.

Well, what if you didn't sign up for the extra strength training?

What if you'd rather catch a few breaks once in awhile?

 Is that so much to ask?

At some point, you'd think you'd be entitled to a free pass or two;

Skip this challenge.

Avoid that crisis.

Delete those problems.

It's not that you're not strong or that you don't have what it takes to get through this.

You are, you do and you will. 

But  you've built enough character already and it's time for things to lighten up a little.
I know it's not really my call,

but if I were in charge of life's wheel of fortune,

you'd get a free spin.

And  I'd be right there cheering you on!

Cheering loudly my lovely ladies.  I love you.

Table for 6 please

For 7 days Austin was staying with us.  I was very anxious about his visit worrying there would be issues that would come up.  I am happy to say that my family of 6 was under one roof for one week and it was pleasant.  It was also natural and felt right. 
I remember years ago when we were a family of 6, at the restaurants, movie theaters, family vacations etc.  The past two years we have been a table for 5 kind of family.  Sure we always said we were a family of 6 or that we had 4 kids, but for people on the outside looking in on our family it looked like we were a family of 5.

I was worried that because it felt so right and natural that I would be overcome with guilt and sadness when Austin left Monday.  Luckily that wasnt the case.  Sadly Austin once again made some very bad choices and chose to not go home all night and also not go to school the next day. 
These choices Austin made helped me realize that we will always be a family of 6, but not always living under the same roof.  Very soon because of Austin's choices he will likely no longer be living under his Dad's roof either. 

And just because he doesn't live here that makes him no less a part of our family.