Almost time to go home

So just on the end bit of a two week stay in Edmonton. Meeting the new doctor and having the best visit with a specialist since diagnosis. A week and a half worth of Rwo Shr with Mrs. Chang. Wow is that crazy painful. Apparently if I didn't need it it wouldn't be painful, and when I'm fully healthy it'll feel like a wonderful foot massage. There were a few funny moments. She squishes the crap out of end points of the various energy lines for various organs and functions, and the 'sleepier' they are the more it hurts. She sits there as tears are almost running down your face saying to your various organs "Wake up, wake up, wake up". Well she's doing my adrenal glands, and she's telling me how they are very sleepy. I told her that they are permanently asleep until I get off the prednisone. I told her they're atrophied and haven't worked since last May, so please don't try and wake them up. Man did that hurt though. Then she's doing where my appendix is on my foot, and it's not hurting at all - feels quite nice actually... She says to me, "oh, look appendix good" I start laughing and tell her that it's good because I haven't had it in my body since I was 5 years old. I tried to get her to keep rubbing there and nowhere else, but it didn't work.

She actually did my feet just before I got diagnosed and told me all the organs that were affected before I got the good news from my dream team. She was dead on. She told me a few things this time too that are beyond what we've had our radar on, so I'm curious what will come of it.

Meanwhile, as fun as this has been, I am so totally looking forward to being back in my home again around my peps and in my environment. It's quite a bit less hectic there - oddly enough. So Jasper, here I come.

Open Comments

Hey y'all,

I've just opened up the comments form so that I don't have to moderate as I'm not at my computer often and I don't want to discourage people from commenting. So if you have anything that you need to send me privately just fire me off an email. I'm pretty sure you can do that from the blog. I'm new to this blog world, if you have a hard time, just post something here and I'll get it straightened out.

Thanks for following, and stay in touch.

Yipeeeeee!!!!

Not quite sure how to express my joy in words, but whoa, am I one seriously happy girl.

Met my new rheumatologist yesterday - and yes, she said she would be my new doctor - and she totally rocks. She's super nice and she's completely versed and immersed in the world of vasculitis. She said a few things to me that made me feel like this person will go out of their way to make me get better. She also knows in which direction to go out of her way to help me get better, so I feel like I'm in very very good hands. Not only was the visit awesome from a Wegs perspective, but she's also a very nice human being which is way more than I could have ever asked for.

We're about to change treatment protocol because she said that she's "concerned about me". So onto a new road we go. We're both super keen to get this thing under control and get back to a normal life (or as Hana would say - normial). So bring it on!

I'm also a very superstitious girl - as some of you might know - and right after the appointment as I was coming home, I drove under a bridge with a train engine going above my head. This is very good luck. I know, I'm a crazy Bulgarian.

It's a new day. I must admit that I had to shed a little tear of joy after the appointment. I kept it together during the appointment (and there were a few places where I felt a little misty) but I had to release the hounds after the appointment. I was THRILLED!

off to the big city

Well off to the city firs thing in the morning - like noonish knowing me. It'll be a big couple of weeks. Seeing a rheumy specialising in vasculitis... first visit. I'm excited, curious and a little nervous. Also a two week RwoShr treatment. That'll be painful but very good - I know it. The only bad thing is that I have to drive through the storm of the winter. It's been snowing non stop for days - and normally this is a great thing, but this time it'll make for a hairy trip in. My only solace is that in the past I've noticed that there is less semi trucks on the highways on Mondays, so hopefully this will be the case tomorrow.

Next post will be from Edmonchuk... after the appointment. Cross your fingers for me.

P.S. Anna, hope things are going well with you. I've been thinking about you. Click on the link from a few posts ago - I'll keep getting stronger. Super fun song to dance to with the kids. Hana and I have been rockin' out to it - and I think it actaully made me feel better for one day. One day is better than no days. I actaully woke up 'headache free' on Thursday. It was like a godsend. It lasted until the evening, then the headache came back, but almost a full day without one was wonderful!!!!

Truly Blessed

I just have to say that I am truly blessed to be surrounded by amazing people. I really must have done something special in a previous life to be where I am today. My family and friends - here and around the world - are the coolest, kindest, most generous people and I have to shake my head some days because it seems so surreal. So a big fat THANK YOU to all of you for being so totally awesome. I'd list, but the list would be too long and I'd surely miss someone with my pred head, so you know who you are. I'm one lucky lucky goil.

I'll keep getting stronger

Funny where you get your magical moments of inspiration when  you have a four year old in da house. I think we've danced to this 50 times already.

http://www.youtube.com/watch?v=cyVzjoj96vs

"The Spoon Theory" of being sick

Just saw this link on the Wegener's Forum - Thanks Brian C. for posting it -  and thought it was great. It really gets across what I've not been able to. Last few days I've been low on spoons....

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Happy New Year

I write this post on my brand spanky new laptop that I got for Christmas from my wonderful husband. I told him that I wanted to get a refurbished one so that I can work on the book project without being stuck to my desktop computer, and poof, this new jobbie came into my life. I have no excuses now.

It's the media weekend in Jasper and the snow has come down in huge heaps - maybe you media types need to come out to Jasper more often. I say 'you' because Brian told me that a few of you are following my blabberry blog after talking with you last night at the Astoria. I'm shocked, and delighted that non-weggies are interested. Thank you!!!!

So things are looking up again since we upped the chemo. It took a few days for the kick to stop 'kicking'. When I first started the treatment in May, I would get completely knocked out for hours on end. At first it was a complete knockout, then it turned into deep sleeps, then into light naps and unfortunately the naps eventually disappeared. When I upped the chemo on this go-around (50% more - as they only come in 50mg tablets and you can't split them) I definitely felt the 'whomph' of it, but not anything like in May. It's getting less 'whoomphy' each day, so I think my body's getting used to the new dose. Liver enzymes going down within even three days of the new regime. My inflammation markers were a little more stubborn but on my last bloods they too went down by a few points, so even though they're still quite high, the trend of upward mobility (good in other circumstances but not in this one) has stopped and reversed itself. Why is this such great news???? Because if they didn't stop moving up, my doc threatened to up the pred. That's worse than being told you have the starring role in a horror movie - and it makes you look like you belong in a horror movie when you're on the wicked drug. Soooo, I'm super happy that the trend has stopped and I don't have to go up again. Wooooo - hoooooo!!!!

I went for my third day of skiing this season yesterday when I dropped Hana off at Nursery School. I only have one or two runs max in me so it was perfect. It's so good to go out and feel some of the stuff that old Marta use to do. It gives me hope that one day things will be the same as they were before May of last year. My aerodynamic cheeks give me that extra super human strength to make super awesome carvy turns. Or not. Sure was great to be out there though. Feeling like a human and not a Weggie for a few moments.