Hi Irene,
Here's a link to a few Weggie stories going by a similar outline to follow that we were thinking would make a good book of experiences (I still plan on using them later on.) Weggies Unite: Other Weggie Stories
I know what you mean about the feeling of having lost all you've kind of felt like you were working for by being healthy, active, and eating the right stuff all your life. I've personally always used exercise for the fun factor and have gotten the strength as an accidental side effect. To me the kick in the head was missing out on my 'fun' by not being able to be physical in the great outdoors. I went back to skiing pretty quickly after diagnosis, since the lifts help on the way up and gravity helps on the way down, turning and stopping don't suck up that much energy. Now I've got the new e-assist mountain bike, and can have fun with my hubby on the mountain bike trails - again. I can't say in words how happy and thrilled I am to get to do that again. I too have a 'slight' caffeine addiction. When I first got on the cocktail after diagnosis, I was told by the pharmacist that I can't drink coffee, so I didn't for more than a half a year. I learned on this forum that this was not the case and after some further research, I went back to my old friend, caffeine.
I am only an 'advocate' because it's my coping mechanism. I feel like the gross stuff needs to be negated by something positive for it to be worth the experience, so I do stuff to negate the grossness that is Wegener's. It also forces me to focus my attention on positive rather than negative. I know I have a personality flaw that gnaws on me if I complain about something and don't put the effort into trying to come up with a solution rather than just complain. I know it drives people around me nuts, but they're kind and humour me. ha ha.
I do believe that the H1N1 vaccine triggered my onset of WG. I've done considerable research on this, and it seems to support my hypothesis. I've also got some solid docs backing up my theory. I hadn't made the connection at the getgo, but after a flare (only days after I got a flu shot 7 months after diagnosis) it was Sangye's help and others on this forum that helped me initially connect the dots, and then I started to research the possibility that this was the case. The evidence is strong that this was the case. So I have an aversion to vaccines, but this is my experience and does not reflect a communal experience in any way. We all have our own triggers, and this happened to be mine. It's just worth a question (if you talk about risk-benefit) if you have a disease where the immune system is 'confused' is it the best idea to play with subcutaneous concoctions that are designed to mess around with your immune system. That's my stance, and I don't suggest anyone follow it and make their decisions based on their own experience. I know how divisive the vaccine question can get, and I'm not at all interested in starting a debate on this.
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