Hard to believe it has been a year. I was in Orlando for a conference and ran around the Gaylord Palms hotel begging people to text in a vote. I found a dialysis company who was having a large meeting there, and they had me on stage telling everyone to text. Then, they were texting their coworkers and friends to tell them to text. Probably getting the drunk people in the bars to text as the funniest! Many just handed me their phone and let me do it. It was a long month of begging, pleading, and hoping, and WE DID IT! CURE JM WON!!!!!
Since then, we have gotten a lot more experience with JM and Cure JM. I hate JM - it is an awful disease that is life changing. It changes your family, friends, your schedule, the activities you do, your financial situation, your hopes, your dreams, your goals, and your emotional well being. I am so sorry that these kids have to go through this dreadful disease. Some days, I just ask, "Why Morgan?" It is so hard to watch someone you love suffer so much.
The one good thing that has come of it is Cure JM. I hate that everyone is struggling with it, but Cure JM is an INCREDIBLE organization run by INCREDIBLE people. They have inspired me and helped me more than I can count. I proudly wear my bracelet every day and wear my shirts as often as possible I tell anyone who will listen about JM and about Cure JM. I am so very proud to be associated with it.
If you have a friend or family member dealing with something like JM, I have some tips/thoughts to share from our experience and from talking to other moms of kids with JM..
1. No question is stupid. Ask your friend/family member how it is going. Most likely, it is always on their mind or close to it.
2. Invite the sick kid and/or the family to activities. Many times, you feel all alone or different than others. You and your family are now different and left out of things. Invite them to activities. Even if you think they can't do it physically or won't be able to go, ask anyway. They will appreciate the invite regardless.
3. Listen. Many times they just need someone to vent to. It is frustrating, scary, and aggravating.
4. If you have the ability, ask how you can help. There are so many things to remember and to do from doctors appts, to refill pickups, to tests, to tracking information. Many families really struggle to meet all of these needs.
5. Don't assume everything is good if the person is looking OK. Many times the pain and issues are not as noticeable. I think it is actually easier when people can SEE something wrong as they get it. This is a big one that I hear often from other moms.
My perspective on life has changed incredibly. I am really trying to focus on what matters and to let everything else go. I am not great at it yet, but I am getting better. On a sillier note, I am not a completely switched Diet Pepsi drinker as I still love my Diet Coke, but I do drink Diet Pepsi more than half the time now. I also make sure to tell people about what a great thing Pepsi does with the refresh grant project. GO PEPSI!!!!!!! Way to make the world a better place.
As for Morgan, she is more stable than this time last year, but she has had incredible pain with her joints. She still gets her two infusions and month and still takes 16 pills a day. Here's to hoping for a better year this year. I still can't believe she is 13!!!
For those of you who are interested, here are some of the advances made in JM research - thanks to everyone who has supported Morgan, our family, and Cure JM over the last year.
To read some of the latest advances made in JM research - thanks to you! - click on links following:
Dr. Rider - "Genetic & Environmental Studies" - http://www.curejm.com/research/genes_environ_research.pdf
Drs. Katz, Rider, etal. - "Parents' perception of self-advocacy of children with myositis: an anonymous online survey" - http://www.ped-rheum.com/content/9/1/10
Drs. Niewold, Pachman et al - "Familial Aggregation of Autoimmune Disease in Juvenile Dermatomyositis" - http://pediatrics.aappublications.org/content/127/5/e1239.abstract
To read about what is currently being researched at Dr. Pachman's lab in Chicago - http://www.childrensmrc.org/pachman/ - You get a GOLD STAR if you understand it all!! ;-)
Here is my post from last year so that you can relive the excitement! :)
I am thrilled to report that Cure JM finished the voting in the Pepsi Refresh challenge!!!
This is the first time I have relied on social networking for something important, and today I am amazed by two things.
1. Pepsi- I am amazed that they do this. It takes not only the investment but the resources to create and maintain the voting site. I have always been a Diet Coke lover, but I am officially a Diet Pepsi drinker now. :)
2. The power of networking, especially social networking. It is incredible that tweets, texts, emails, facebook, and phone calls got enough votes to win. Remembering that only about 5,000 kids have this in the US, there was not a huge group of parents to push this. It is amazing that the passion of these parents did it. We are all definitely stronger as part of a community that has a network. Simply amazing...I am a BELIEVER!
Thanks to all my friends and family who helped vote and who listened to me ramble on and on about this. $250,000 is a Huge step in the right direction. Thanks also to Pepsi!!!
One day, we will find a CURE for Juvenile Dermatomyositis!!!!!
