I just found out yesterday that another dear friend who I feel very close with yet have never met in person has passed to the other side due to complications from Wegener's.
I'm shocked to the core. I felt like someone kicked me in the gut when I found out.
My dear friend Al Swanson has brought wisdom and a sense of calm and control to so many people in the throws of a new scary disease threatening to obliterate any sense of normalcy out of ones life, and perhaps even ones life itself. He was a very wise, kind, generous man, and I feel blessed to have had his energy touch my energy on this planet... even if from thousands of miles away. I feel so bad because I've been ignoring my computer for the last several months in an attempt to regain my life, and I feel like I didn't have a chance to say everything I wanted to say to Al. We still had shit to do. We still had conversations to have. I still needed to learn more from him and have an opportunity to make him shake his head in disbelief with something crazy I haven't come up with yet. We still needed to compare and boast of the beauty of our respective stomping grounds.
My heart and thoughts are with Al's family, of whom he spoke with such love and respect and admiration. We have all been lucky to have been touched by Al's wonderful sense of humour, and enthusiasm to share himself with anyone who was open to it. Eileen, thank you for sharing him with the rest of us Weggies, and Al, we'll hook up on the other side and finally get together for those cocktails we kept talking about getting together for overlooking the mountains.
Love you buddy. Thanks for ... well, everything!
m
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')
Hi Marta, I have not been on your blog site for a while. I am sorry to hear about your friend Al. What an emotional journey you are on. I have so much admiration for you... you are one tough cookie girl! Such an amazing advocate for your fellow Weggies worldwide! wowzers! I have a hate on for Pred as well. My son is on it 5 days a month (50mg per day) yuk! He was recently switched to Pred from Dex because the side effects of Dex were just awful...he seems to tolerate Pred better...imagine that! I really dislike the stuff and what it's doing to my little boy's personality however it's keeping the cancer away so there you go. I think of you often and send you positive vibes. Your amazing attitude is just awesome. Brenda Toner-Murchison
ReplyDeleteHi Marta,
ReplyDeleteI've been MIA for the past few months but I've been trying my best to follow your journey!
My heart is very heavy for you and the loss of Al. Everytime Wegener's takes another victim I feel like we have lost to the enemy. You will be in my Thoughts & Prayers. Sending Good Thoughts and VERY positive energy!
<3
-A Weggie Like You- :)
hey! i have resently been told i have this bizzare condition im finding it hard to get my head round it ive had 2 lots of chemo and am on steriods 60mg which i dont like they seem to make me hyper im like a naughty kid lol luckly the chemo doesnt make me to ill so far it seems very odd that 2 months ago i was a 4 times a week gym freak now i get puffed out thinking about the gym im lucky to have a great family to surrport me and a great team at the hospital they really did pick up on it very quickly thankfully and got me on the right meds. im back at work on light dutys i cant stay home it drives me insane. i have had a couple of times where i just said what the hell and went out and got hammered but i have to stop that as im sure its not a good idea but its very hard to think about the anormatiy of it all. im only 43. i am very upbeat about this 98% of the time and talking really does help but trying to explain to others is difficult so they goggle it come up with mostly horror storys then feel pity for you or get upset :( i hope you are feeling ok
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