Heading into the Elementary School. |
So welcome my friends, and lets work together to make a difference. I have to say that since I've gotten diagnosed, I've heard of so many people who have WG or Vasculitis and have gone through a painfully long time of misdiagnosis and various medical runaround that I don't think this family of auto-immune diseases is as rare as people think. I think there is more people walking around with it and not knowing they have it than we know. This is why awareness and research is so important. I think new doctors coming out of school are more tuned to it, and we need to do something to alert the long term practitioners to look at and diagnose all of people's symptoms together rather than treating one at a time and missing the correct diagnosis. My dad went to a doctor a few years ago and was trying to tell him what was wrong with him ( he had several symptoms presenting at the same time) and the doctor REFUSED to hear more than one symptom. Told him he has to go out and wait for a second appointment to get his second symptom heard, and so on for the third and fourth (this after dad had waited for over two hours to see him.) I was sooooo totally pissed when I heard that, I wanted to go and wring the doctor's neck. Needless to say dad never went back to him - even though he had been with him since the guy started his practice. Jerk. That is not medicine, nor a doctor. This is what we need to eliminate from our medical system. Doctors who forgot what doctoring is all about.
Ooops. I think I might have ranted there a bit. Oh well. Have an awesome day friends.
Hi Marta,
ReplyDeleteI am really glad that I've found your blog. It instantly made me feel better to know that there is someone else out there with a similar experience. I admire your courage! It is good to see that you have the energy to keep on with family life and the WG-awareness project as well. We must keep our hopes up for the future and for the sake of our wonderful motivators. My 3 kids keep asking me: mom, when will your be back to normal? Well... this is my new me... i'm a Weggie now. I wish it would be easier to laugh at how life unexpectedly has changed. We have to cope and make the best of it.
The Weggies unite movement hopefully makes us all stronger!
Anna/follower from Sweden
Hi Anna, Thanks for the wonderful words of support. I'm never really sure, if you know what I mean? I read your comment this morning just before heading out to the doctor and have been wanting to respond to you all day. Now that I know someone is reading, I promise to move forward on my stalled out awareness project. Yes, the motivators. Thank God for the motivators. Love them!!!! How long have you been on the Weggie Band Waggon? Are you still on the cocktail? I hope that each and every day is smoother and stronger than the day before for you (I know WG likes to throw curve balls at us just to keep us on our toes - so hopefully not too many coming your way.) Are you looking forward to winter as much as I am (pred sweats and all)? All the best to you and your family Anna. Maybe I can turn to you for a section in our Weggie book. Send me info by putting up a post and I'll just keep it private.
ReplyDeleteMarta
Weggies Unite!
Hi Marta, great with the favourite links! For me it all started in dec 2009. On cytoxan 6 months, still on preds...difficult to wean. Who is that moonfaced person in the mirror?! Curve balls... I've seen a few of those, doing OK for the moment. Winter - starting to dream, but our winter (snowfall) isn't due until dec/jan.
ReplyDeleteI would love to contribute to your bookproject. I'm not that into the blog technicalities (selected wrong profile) - Sending info by putting up a post? Is that what I just did? Does regular e-mail work? All the best/Anna
Hi Anna, Just got your message. Post another with your email address and I'll reply to you directly without posting it on the blog. I'm very happy to hear that you're interested in playing in the 'book sandbox'. I've written the intro yeterday (thanks for inspiring me to get on it) and am working on my section right now so that I can figure out how to organize it and then send it out to fellow Weggies interested in sharing their stories. Looking forward to chatting with you. Stay strong, stay healthy and hope you're having an awesome day.
ReplyDeletemarta