Wow, I haven’t written in this blog in ages! It’s not that things haven’t been going on because, believe you me, Mr. W has been hanging on like a loose tooth. However, I guess I just haven’t had the time to write! I believe it all started about this time last year.... shall we regale?
Let’s see..... for the past couple of years I’ve been attempting to do some fundraising for the Arthritis and Autoimmunity Research Foundation. I was on a committee where we were trying to raise 1.5 million dollars to help create a professorship so people like, the amazing Dr. Simon Carette, could perform vasculitis research! I was the person doing it on the east coast.... the east coast coordinator for the group. I contacted a venue, set up a date, got some donations and started working on it. However, this plan all went down the tubes in May, last year.
I can remember a YouTube story circulating through my ‘Weggie Friends’ and most were reposting it in support of vasculitis Awareness Week (which was this past week, by the way). I can remember the first time seeing the story on one of my fellow Weggies, Mark Marriott, profile. It made me so sad! It was the story about a young man named Mark Lesko who passed away from the disease. If you haven’t seen it, please have a look at it here. As the pictures of a smiling young man flash through the screen, his father is recalling his son’s heartbreaking journey with this debilitating monster. I think the last line of the video, which is spoken at the same time as a picture of Mark and who I am assuming is his significant other pops up on the screen, is what touched me the most. Choking back tears, his father says “I’m determined to not let his life be in vain”. It was bittersweet because while I was so happy that I was out there doing my part in raising awareness and funds and all that good stuff for WG, I really felt awful that this happened to this young man. I also really felt awful that this could have easily been me, or any one of my Weggie friends! I think it was at that point (which was very close to my 2 year anniversary of being diagnosed) that I really realized, wow, this is BAD. Of course, we all read those stories about wegeners being a crazy havoc reeking disease when we first got diagnosed, didn’t we? Then, you read a little further and realize that most people would pass away from it when they haven’t received treatment. Generally, this would be something that would have only occurred years ago, before cyclo and methotrexate and pred..... however, then I see something like Mr. Lesko’s story and it puts a whole new spin on things! This cretin is living inside of me and it’s scary as all hell! However, I digress. A week after viewing this video, I started getting a chest infection (great). I was coughing up yuckiness and was feeling overall GROSS! Of course, I went to the doctor and she diagnosed me with bronchitis. A couple of days later, I started getting these huge hives all over arms, legs, chest etc. So, I called in to work and told them I was going to drop by the hospital to see what they had to say about it...... they had something to say, alright. The buggers kept me in! I was having a super flare and needed to be pumped with IV pred to knock it out. So, I spent almost a week in the hospital. YUCK. So, needless to say, my AARF fundraiser planning moved to the side.
I finally got out of hospital, was feeling better, went back to work and got struck with another bomb. My Nanny passed away. I was absolutely devastated. I had a really hard time dealing with it. Not only because I was always very close to my Nanny growing up, but, I had never lost anyone before in my life. So, it was an extremely hard month and my fundraising moved even farther to the side. Eventually I had to call the venue and cancel. I had planned on picking it up when I was feeling myself again, but, I started working on a project with work that was never-ending. It ate up a lot of my ‘me time’ so, I didn’t have enough hours in the day to even think about taking on something like I had envisioned.
One of my very first Weggie friends, Heather Coppard, passed away in March of this year. Her untimely death made me realize that I had to pick up the pieces and put my plans back together. My mission is too important to let slide. That is why my fundraiser, “Celebrity Fling for Vasculitis and Autoimmune Research’, which will be held in the Summer/Fall of 2010 or Spring of 2011 has been reborn, and will be in memory of that sweet, sweet lady, who was always there to make me smile when I was having a bad ‘weggie day’. Rest Peacefully, Dear Heather.......
