This iReport is part of an assignment:
Living with MS
About this iReport
- Posted August 13, 2012 by
- CKLambSidell Follow
Location
Williston, Vermont
Williston, Vermont
Assignment
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My MS, My Loves, and My Free Gift with Disease
- hhanks, CNN iReport producer
In 2010 I was diagnosed with MS. I had similar symptoms as Jack Osbourne, but was lucky that my Doctor figured it out within just a few days of my seeing him that I had MS. The biggest obstacle was that I was getting old. I was 35 at the time, married, no kids (DINKS is what it is called, dual income no kids). Did we want to have kids sure when the time was right. While at the doctor’s office with my husband on the phone conferenced in for the diagnosis we had to decide, right then go on meds ASAP and wait a minimum of two year to have kids or have kids now. The joys of modern day technology and a conference call. We had our son a year and a half later and call him our free gift with disease, and yes he is perfect. One negative of MS was being unable to breast feed, because I needed to be on medication as soon as he was born and having people judge me and say horrible things to me about not breast feeding him. I learned to nap when he naps. I learned to watch and take everything in.
Along the way I have had to learn to ask for help, something that is difficult for me. We moved to be closer to my parents for extra help when I get sick and that has been wonderful. I have fantastic friend near and far who are extremely understanding and supportive of this.
While Ann Romney still has her horses, I had to partially give up yacht racing, no longer having the energy to be out on the boat all day on the weekends or in the heat for that long (there are ice vest but that adds to the weight of the boat, a big no no). I still get out for mid week races but it is not the same. I spent a week in bed at Christmas with a horrible relapse unable to hold my son, wondering if I would be with my son on his first Christmas morning.
My husband has become a great support person but at times feels frustrated that he can’t fix my disease. When I started my injections we were worried how would I remember to take them or where I was supposed to inject next, we are tech people and knew there must be “an app for that” but there wasn’t a good one that let me track and take notes of how I felt and was reasonably priced ($0.99). That is when he started his work. He asked me questions periodically about what I would want in an app and over the next 6 month in his (rare) spare time he would work on it and finally created an app for me to track everything (MS Journal).
This past year I started to get involved with the MS society. Doing my first MS walk and volunteering at the MS Bike event. Next year I would love to bike the 50 miles but we will see. I view this disease as a challenge now. What can I do? How far can I go? What haven’t I done that I still want to do? How can we work around this unknown thing…the ticking bomb that may or may not ever go off. I have taken a positive view on most things, this does stink but it could be worse.
Along the way I have had to learn to ask for help, something that is difficult for me. We moved to be closer to my parents for extra help when I get sick and that has been wonderful. I have fantastic friend near and far who are extremely understanding and supportive of this.
While Ann Romney still has her horses, I had to partially give up yacht racing, no longer having the energy to be out on the boat all day on the weekends or in the heat for that long (there are ice vest but that adds to the weight of the boat, a big no no). I still get out for mid week races but it is not the same. I spent a week in bed at Christmas with a horrible relapse unable to hold my son, wondering if I would be with my son on his first Christmas morning.
My husband has become a great support person but at times feels frustrated that he can’t fix my disease. When I started my injections we were worried how would I remember to take them or where I was supposed to inject next, we are tech people and knew there must be “an app for that” but there wasn’t a good one that let me track and take notes of how I felt and was reasonably priced ($0.99). That is when he started his work. He asked me questions periodically about what I would want in an app and over the next 6 month in his (rare) spare time he would work on it and finally created an app for me to track everything (MS Journal).
This past year I started to get involved with the MS society. Doing my first MS walk and volunteering at the MS Bike event. Next year I would love to bike the 50 miles but we will see. I view this disease as a challenge now. What can I do? How far can I go? What haven’t I done that I still want to do? How can we work around this unknown thing…the ticking bomb that may or may not ever go off. I have taken a positive view on most things, this does stink but it could be worse.
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