Tuesday, January 27, 2009

They're here!

Today my drugs came. Alittle old man - a private delivery service - in a beat up old Chevy pick up truck showed up at our door with a small styrofoam container. In the styrofoam container was an even smaller box, about the size of a small tampon box, full of liquid that costs over $3000 per month. So I have in my possession the stuff that is hopefully going to slow down the progression of the MS. I have a tentative appointment - I have to get the kids squared away before I can confirm - for Thursday with the nurse to figure out the nuts and bolts of these injections.



A couple of things have come to mind as of late, and perhaps I have mentioned them before, maybe several times. There is a "rule" so to speak in MS. The progression of your disease within the first five years (I think that is what it is) is thought to be how your disease is going to progress life long. So far, in the first three months of this (come on, cut me some slack) I am on a pretty good road . . . ok, I have a little ways to go. Jay took my train of thought away, so I do not remember what else it was that I was going to say on this train.



This morning, as usual, I was spending sometime with Matt Lauer before the kids got up. Generally the tv goes off when they get up, but today I was trying out a new "system" for getting ready on school mornings so I was somewhat out of my element and the tv didn't got off right away. As I was making breakfast for the girls, I happened to look up at the tv - the volume was so low that I couldn't hear it - the blurb on the bottom of the screen said "Woman Living with MS" or something to that effect. Really? The one moment that I happen to glance, it is about MS. The story was actually pretty uplifting. It was a younger woman who had MS and had lost most of her ability to walk after being an athlete all her life. She was using this new apparatus that hooks to the leg, a sensor in the heel and a remote control. This machine allowed her to walk and run virtually normal again. Amazing. Her body was also retrained, therefore she did not have to use this tool all the time anymore.



We made it to school on time and Madeline and I were off to the gym. A great workout. Ran some errands and back to pick up Emma. We came home for lunch and to do some work on the house. I now understand why some people have two dishwashers. I always thought it was living in excess, but now it makes sense.
The girls layed down and I began reading a new book. Jay got home and we were off to gymnastics for Emma. And since Maddie is starting gymnastics on Thursday, Jay found her something to wear. She was very excited to try it on - over her clothes. Emma was happy to have Grandma Kim as an extra audience member tonight for her class.



Dinner and bed time followed. Jay spent a long while on the phone catching up with a friend from long ago. He was so excited to talk with him and catch up. Nate has a beautiful family and an amazing home. We have high hopes of driving out to Montana to see him and his family this summer/fall.



I was talking with a mom today before the kids got out of class. She doesn't know about my "condition", but she was talking about a friend of hers who is battling some demons. We discussed about how life can make you rich, but being truly rich or wealthy doesn't come frome money, it comes from spending quality time with family and friends cause you can't get that back. If this is truly the case, Jay and I are wealthy beyond our dreams!

1 comment:

Anonymous said...

Andrea:
I imagine you were aware that your mom gave me your web site so I could stay abreast on your blog. I look forward to logging on every day. Naturally I was shocked to hear of your MS, but your strong positive attitude, and a family that is so close, and full of love
sure makes your blog very uplifting. Until now I knew nothing about MS, however since you have acquired it, I have been logging on to different web sites in order to get smarter. The Pics are great. The girls are beautiful, and Jay sounds like a Prince. I know you will continue to be strong, and my prayers go out to you daily.
God bless to everyone,
Love, Grandpa Mooney