Wednesday, April 17, 2013

Happy World Hemophilia Day!

So, today is WORLD HEMOPHILIA DAY. I woke up this morning to find an e mail from the mother of a Hemophiliac who recently passed away. The thought that my blog could give her a little tiny bit of comfort made me feel great. Hemophilia is a terrible affliction, I wouldn't wish it on my worst enemy. It also affects such a small group of people that I feel like sometimes we get swept under the rug. Not a lot of people are out there fundraising and advocating for Hemophilia, thus we have had to become our own advocates and canvassers. Sometimes I feel like between advocating for myself and being sick and trying to raise awareness I am completely exhausted.
The issue of Hemophilia care will never stop being important to me but right now my main focus is my wedding. Only 92 days away. I have to say its been so nice to have something pleasant and fun to focus on. I love thinking about and planning the wedding.
I think if ever bride had an awful chronic illness to contend with they would quickly learn to not stress about the little things.
One thing I worry about is getting sick for the wedding but that is one of the joys of being a hemophiliac you never know when you are gonna get sick and no matter how hard you try you can't predict it.
All you can do is take it one day at a time. Today I wish everyone a Happy and Healthy Hemophilia Day and I pray everyone that someday everyone has access to care and that they have someone to go out for supper with for Hemophilia Day!