Just got off the phone with Dr. Yacyshyn - my superhero doctor - and she managed to give me goosebumps. Why you ask. She's starting a Vasculitis Centre in Edmonton this coming January.... Wooooo hooooo.
I don't know how many of you out there watch 'House', but if you do you might notice that whenever things are really weird a diagnosis of Vasculitis is inevitable. Then comes the inevitable immunosupressants and steroids. I use to have my ears peeled for Wegener's but if you listen closely there's usually at least one mention of Vasculitis in each episode. Well now, for us Albertans there will be a Centre us strange but true patients will be able to go to in order to feel more normal and understood.
Yeeeehaaa Dr. Y. I thank you on behalf of all of creatures with inflamed blood vessels and messed up antibodies.
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')
That's awesome Marta! I'm not a House watcher, but I might become one. I brought the laptop to the hospital the other day and showed my you blog and story - she still is pretty weak, but she was so happy to read about someone else who had/has similar symptoms/issues...made a big difference for her - thank you so much for your blog.
ReplyDeleteCheers,
Michele
oops, "showed my mom your blog" too fast with the fingers....
ReplyDeleteMichele, I'm so glad this can help someone in some way. My five year old is now a 'House' watcher. She even gets upset when there is NOT enough doctoring in an episode. I'm coming into the city for a doctor's appointment on Friday. Where's your mom at? If you would like I can pop by and say hi. You can contact me direct at madcap01@telusplanet.net if you would like. Send your momma my love, and tell her that this too shall pass and she'll get on the other side.
ReplyDeleteAll the best to you and your family. Big hugs.
Thank you so much Marta! She is at the University of Michigan in Ann Arbor, Michigan. I just read mom your reply, and she got a big smile on her face and said, "tell her thank you", she is having physical therapy now...she gets moved to a rehab center tomorrow for a few weeks and then back to U of M for Acute Rehab - hope to have her home by Christmas!
ReplyDeleteI read mom your latest entry about make the trek to the city to see your doc - we both hope is goes wonderfully!
Thanks for the good thoughts and you might get an email to your direct email (I'm gizeppe3@aol.com). Great blog Marta I can't say it enough.
Cheers,
Michele
Ha ha ha. I thought you were in the province, but you're not even in the same country. Thanks for the pic of your mom. Brian forwarded it to my folks house where I am staying.
ReplyDeleteMy heart to your mommy. It's a crazy ride at first. And yes to your mom's story being added to the book. I think it's an opportunity to makes something good come out of this disease that can help others who are just embarking on this journey. I so know how scary it is at the start. It's totally freaky. I found that arming myself with as much information as possible and knowing everything that's going on is very important and empowering. There will be doctors in your future who will never have heard of it or know very very little about it. I have found that in some cases I know more than some doctors. Not to be arrogant, but they have more stuff that they need to know and don't have the time I had to put into learning as much about this one rare disease some of them might never run into with any patients with. Get your mom to get a note from her docs allowing her to have access to her lab work once she's out. It's very helpful to have access to it and know what's going on inside as well as what she's feeling. She'll notice that there are corellations between how she feels and what the bloodwork shows. She can become her own best advocate (with your help of course) and make decisions about her treatment alongside the doctors.
My visit was great. Can't say enough about my doctor. She's the coolest doctor ever and she's MY doctor. Man am I lucky. We'll give RTX one more go and see if it can do it's magic and knock this baby out of the water completely. Baby steps. My new motto in life (as it will become your mom's) teeny, tiny little baby steps.
Hugs to you all. If your mom can write tell her to try journaling. It's really neat reading my journal (i'm very bad and stop when things are good - probably cuz I get myself too busy with other stuff) from the early days. There were so many new things going on and I'm glad I got them down on paper, as I'm sure I would have forgotten most of it by now.
Awesome Marta! Glad the doc visit was great - it's everything and I hope the RTX kicks it to another planet! Baby steps is my new motto, as I've learned, so I totally get ya on that.
ReplyDeleteThanks for the advice, and we'll do that...mom isn't really proactive with her health, I find I ask way more questions then she does. I live with her, so that's o.k. and I explain it to her later. I'm reading through your links and stuff I find online. I've thought about keeping a journal, since mom doesn't use a computer or write stuff down (I wish she would), perhaps I could capture it.
Glad you get busy with other stuff - means you're feeling good! Since mom has been ill, the last run I did was my half marathon October 2nd (I did speed work on Oct 4th of 4 miles), so I'm not happy about that, but she means more to me than any of that stuff - nor did I get to rock climb much this year :( (she's been on/off sick since May). I get grabbing the opportunity to do something when you feel good. I can't wait to start running again (and maybe I'll get to snowboard when the white stuff flows).
My job has been good to me through this, I'm an animal cruelty investigator in Detroit - and we were short before this - the other two investigators have been awesome (www.michiganhumane.org)...I've been fortunate in that regard, they've been very supportive - like family....salt of the earth.
Our life will never be the same and that's o.k. I'm looking at Weggie's as an opportunity not a burden. Not many people understand that - but if you haven't gone through a crisis like this, you can't appreciate the little things. You're doing great work, and it's making a difference, thank you.
Hoping your weekend rocks and you can do something fun!
Michele