From the Mouth's of Babes

[Lightwarrior]

Of course women don't work as hard as men. That's because they do it right the first time. (Did I really say that)

OMG HAMMY, I can't believe you finally see the light

[marta]

Hello my beautiful friends. I'm doing fine. I just came to the city to see my doc about another round of RTX as I'm feeling the beast awaken slowly... I just want to make sure I don't have to go back to square one, and avoid at any cost going up on the wicked pred again. I'm at 8mg. I haven't been posting as with improved strength come increased responsibilities and activity. I am far too busy. Actually that's my biggest complaint these days - not enough hours in the day to get everything done.

Hana and I spend a ton of time together and since she's having a one day away from momma withdrawl, she's being super awesome and writing cards that make my heart melt. When we're together she yells at me and even gives me the occasional kick in the shin, so it's good to go away for a day to see the angel inside come out and show herself. She's an absolutely amazing kid and I feel so trully blessed to have her and Brian and my family loving me and backing me up in my corner when the 'fight is on'. Truly truly lucky I am. (Yoda)

I also peek in here sometimes but not nearly as much as I would like. You are on my mind a lot though, nothing can stop that.

Some cool stuff to report. Dr. Yacyshyn, Dr. Pagnoux, and yours truly (ha ha ha ha) just got an abstract published in a rheumatology journal at the latest Rheumatology Conference in Chicago (sorry I forgot to ask Dr. Y. all of the details) with the results of the survey that all of US have filled out. The basis of the abstract was that patient generated surveys are as viable as those designed by the medical profession as our results are very similar to what they have from their studies, and our response is much higher than anything out there. So yeah people, we've been published!!!!!

Something else that's cool. Dr. Y is starting a vasculitis clinic in Edmonton starting January. The hospital wants something novel and great aside from just the clinic. She wanted it to be a multi-disciplinary clinic focusing on vasculitis, however she's unsure if she can get all the specialists to have the same time to allocate to the clinic. She opened it up to me to see if I have any ideas and to think about it. If any of you have any briliant ideas, pass them on. This is so cool. It will be the first and only one in Western Canada. I have some ideas, but please please if there is something you have in mind bring it on... this is yet another opportunity where we can have a say in something new and special. I love my doc.

But I love my Brian and my Hana more than anything on this planet, nay, in this universe.

There, aren't you glad I don't post much anymore.... it's always a novel.

[Dryhill]

There, aren't you glad I don't post much anymore.... it's always a novel.

But such an enjoyable and uplifting novel.

[jola57]

Marta, I hope you can keep the beast away, so that Hana can kick you shins all she wants My foremost thought is that Edmonton clinic liase with Mayo, Rochester, and others and bring their expertise to Canada. And not just in experiments and such but to begin treating patients from all of Western Canada. I find that my, and a lot of other doctors, just do not consult with US vasculitis/Wegs experts. With an understanding that treatment is the same all over, the different symptoms we all have should be categorised, published and shared between the clinics. I for one would welcome to be able to call up/visit Edmonton clinic and request that they get in contact with my rheumy and get regular updates about my treatment. I would also like them to feel free in letting my rheumy know if he is not doing something that he should or that would be benneficial to my treatment.