Here's a link to a video that meant so much to me this last weekend, on our second Annual PJ Day. The Grade One classes of Hana's school (Thanks Mrs. Morgan and Mrs. Koss, and JES) sang a very special song from the time I've been dealing with WG. Hana and I used to cuddle together and sway to this song in the early days and as time went by we could dance to it together and the words, although simple to some, really pushed me forward. I indeed felt stronger, bit by bit, and the more strength I gathered the more I knew what needs to be done. How we can change things with our voices, standing together as one. Together we are something else, something bigger, we are strong, and we can overcome this sly beast of a disease that until now has had it's strength in being segmented. By bringing all those pieces together we can now look at the beast as a whole and see where his weakness is and hopefully eliminate the problem so many have to deal with daily, just by getting together in on the fight against autoimmunity.
So when I saw these kids performing it I knew how much strength it had given me, and I could see things turning for the better already. Together we can fix things, by all of us finding the best part of us we can find and use that part to guide you. We all slip and fall sometimes, but if we keep trying, we can change things and this moment inspired me this weekend: http://youtu.be/8yhAkA7TVk8
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
I have Crohns Disease and came across your site from googling prednisone stuff. Love the T-shirt idea. I'd always wished for a shirt that had a dry-erase section that I could put down the mgs I was currently on so fam and others could know how much longer I had or the extent to my Preddiness, Rageness, and so forth.
ReplyDeleteGood luck, my friend. So sorry you have this illness.
Hi Amanda, I'm sorry you've got bitten by the autoimmune monster, but I know that we will see a cure in our lifetimes, but only if we work towards finding a cure for all autoimmune diseases rather than trying to find individual cures. I think they've taken our power away by segregating us, and by coming together we will step over the line and change things for the better.
ReplyDeleteI'm glad you like the shirts. Maybe I need to go and make some more that are more autoimmune based rather than Wegener's based. I just have to find the time. I just dropped .5mg of pred and feel like I've had a dance with a mac truck, and I wasn't leading. This too shall pass, but I hate the weeks following a pred drop.
Take care Amanda, and wear your PJ's next Feb 28th and we'll start getting noticed. Once they know how many of us are out there, we will be unstoppable.
Hello there from a fellow Weggie!!! I just purchased two sweatshirts on Zazzle, not sure if they are yours or not. I'm excited to wear them and bring some more awareness to what is going on.
ReplyDeleteI am so tired of people not knowing what it is!!!
I'm so glad I found your blog.