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')
Thursday, January 19, 2012
Read some more Weggie stories
Since there is so much on my little plate (apparently that's a good trick to loose weight, eat from little plates) I just don't see being able to publish the book in the foreseeable future, I've asked some of the people who have submitted stories if I can post their stories on here. There are more at home, but I can't make Brian look through my disorganized email folder and send me all of them. He's sent me a few and I've asked the owners to post their stories and they have graciously agreed. Thanks guys. To read their stories go to the tab above that says Other Weggie Stories. We're making a difference, one little 'ouch' at a time.
Subscribe to:
Post Comments (Atom)
Thanks for posting the stories, Marta. It reminds me to get on with my own. Soon....
ReplyDeleteYou still going in as scheduled for the next infusion, or do you have to deal with the V. zoster first?
Al
Hi Al,
ReplyDeleteWent in yesterday and got round two. Knocked me on my butt but mostly because I couldn't sleep the night before. I figured it was OK cuz on round one I got to have a great nap during the infusion... not yesterday, the Benydril gave me restless legs syndrome and there was no way I was going to be able to sleep. I was so frustrated, I can't put in words how chocked I was. So I got home and crashed and got up at 11am this morning. I wasn't going to let the possibility of getting chickenpox mess with this expensive treatment that my doc worked hard to get for me and I need. It's been 16 days since exposure, so with each passing day the chances diminish. I'm hoping that I'm out of the woods. I'm praying that I'm outta the woods. Crazy couple of weeks. I totally miss my little family - this is a long time we've been separated and it sucks. I'm going home on Friday - with bells on.
Well done, ski woman. (As I've said elsewhere, sometimes the correct commas of life are necessary.)
ReplyDeleteNevertheless, I would like to offer a couple of pieces of advice. Today, I heard a radio story about a woman who reminds me a lot of you. Seems she is an entrepreneur who owns a flower growing business. As part of her proselytizing campaign, she had a film crew visit. She told them the story of watching a hummingbird pollinate the flowers in her hand, but she told it rapidly enough that the director noted that she was acting like the hummingbird herself, He asked her to slow down, lest her point became as blurry as the hummingbird. In this way, Marta, I recommend not pushing yourself so desperately for a spell. You might be better served by taking some time just smelling the flowers. I think young Hana comes by the fire in her heart quite honestly, as this is what her Mama is all about. (The vaunted pred rage may have, in you, no chance: You would just blast your way through it!) Nevertheless, considering the hummingbird image, pollinating everything will come soon enough.
The other bit of advice is to not let the doctor forget about the chicken pox issue. Even if you get through this episode, which we all truly hope will be the case, it is part of your condition, apparently, that you will not be able to fight off this virus, should it happen in earnest. You need to remember that anti-virals are only effective if you start them immediately after the first sign.
Of course you want to get home, and back to the small town. And you know there are a couple of other folks who want this more than anything in the world, except, of course, for you all to be able to forget about the stupid disease. I have no doubt that father/daughter bonding has worked very well, but enough is sometimes too much. And yet, I believe you will find Hana has grown some, and she is likely to see you in the same light. This is a good thing, and for you, I think, a glorious thing. Yet I know I certain that you will revert to being a hummingbird, or other restless creature, soon enough,
Al
Let's eat grandpa. Let's eat, grandpa. Yes, commas are necessary, it could be life or death with the commas in the wrong place.
ReplyDeleteI promise to try and slow the pace of my wings to at least that of the crow (on a breezy day), although it hasn't happened much. I came back after our 21 day separation only to find out there's another case of chickenpox in the school, so I've been keeping her from school and trying to get the medical pros to see if she needs/can get a chicken pox booster (now considered the norm by the Pediatric Association - and adopted by a few provinces but not ours. Both kids that got sick had been immunized. I can't afford to uproot my life every time a kid gets the chickenpox in our town with one school available. So Hana got a blood test yesterday to determine whether she has immunity or not. I think I might just ask them to give her a booster and pay for it... if the only issue is the cost of it. So that was yesterday, I was pretty wasted at the end, but I promise to take it easy. We do have PJ Day coming up, so maybe after the 29th.... for a few days.
We've all grown up a little indeed. It was tough but in the long run probably good for all of us. At least that's how I chose to look at it (with the exception of a little guilt because of what this disease that's attached to me is making me put my family through - but I'm sure that we all have those feelings deep inside, hidden around a few corners)
Take care Al. I'll keep you posted on the progress of PJ Day, you got any good ideas to implement in your corner of the world? You know me, gotta ask.
And well that you do ask. Someone, you see, needs to kick my backside now and then. As it turns out, I do have a pretty good photo op in the works. More on that soon....
ReplyDelete