Upward and onward

Many things going on in my bubble of non-reality known as Jasper. It's November 9th and I went for a ski today. Crazy. I am not what I use to be but being up there just has this healing effect on my soul and everything around it. Kinda like what Maui does to me. I only went for a few runs because I just don't have the jam, but boy it was wonderful.

I've also decided to go with the better option of those presented to me and will be retiring on disability. What I told the wonderful lady from the insurance company is that I know that I will have times where I'll feel strong and closer to the old me, and I'll have a hard time being a person on disability at those times, but I also know that I will need down time in the future because a big phat flare lurks just around the corner waiting for the perfect opportunity to pounce. So I will do what many fight to get to do and go on disability,and I'll use my strong times to try and make things better for all of us. I'll feel justified then with the disability thing and it'll be good for all of us. I have gotten together the most amazing group of people for our Board of Directors for the new Non Profit Society we're starting up. We have my awesome sister Hana Rode, who runs the Carpet Studio, Sue Cesco, Manager of Friends of Jasper National Park, Steph Sophocleous, Manager of Tekarra Motel and co owner of The River Stone Yoga Studio, Richard Ireland, Mayor of Jasper and partner at Rodger and Ireland Barristers and Solicitors, and little old me, Marta Rode, Weggie instigator. You watch what happens when this group get their hands in the batter. For this coming March 1st we'd like to take last year's Pajama Day success and multiply it exponentially. I will keep you posted as events unfold, but we're taking the world by storm this coming March. Get your PJ's ready.

Funny thing, moving along

I haven't shared this with anyone except for you. It's kinda like a diary here and I write as if nobody is reading, but I have to articulate this and what better place than this venue.

So in a situation where any other Weggie would be counting their lucky stars, I find myself pushing back and I think I might have just had the awakening moment I needed to move past that imaginary line I have drawn for myself.

I have been approved for permanent disability from my insurance company (I have also applied, on their insistance, for disability through Canada Pension Plan, which I wont find out the results until the end of November at the earliest.) So what's the problem? The problem is that I wanted to go back to work. I wanted to go back part time but because there is so much uncertainty with my particular situation they want me to leave my job, a job I've been working for a long time to get to full of security and benefits and all that jazz. I am being forced to make a decision to either go back to work, resign, or retire on medical grounds. So you can understand why I've been pushing back and not wanting to leave my job. I really feel like I'm being treated very unfairly right now, and was going to take this on as a fight but I am having second thoughts about fighting as it's not so much worth loosing my health over. As long as I know I can still financially contribute to my family, I'll be good.

I met with the Superintendent of the park (the uber boss, who happens to be a very nice man) the other day and he had this look in his eyes when he was talking to me. I couldn't make it out, but it felt like he was feeling sorry for me. He gave me a hug when I first arrived for our meeting and at the end. I know he's a sincere man with the best intentions. But it was the way he was looking at me while we spoke. I went home and tried to make sense of it, and it hit me. Maybe he feels bad for me because I haven't come to grips with the fact that things have changed monumentally and I am not who I was before January 2010. I will not be that person again. I can try my hardest, but from a physical perspective, I might not get there no matter how hard I try. Maybe he felt bad for me because I am still moving forward under the assumption that I will be me again, able to take on the world and do whatever I want to do. Maybe he sees the sickly person I am as he looks at me and speaks with me, while I, don't see the physical manifestation of Wegener's (unless I look at a mirror or a picture of myself, which I avoid doing whenever possible) am operating under the old memes.

So I came to this crazy place where I figured that maybe this is the Universe kicking my ass again to make me let go of the old mental constructs I believed to be 'my' reality. It might be time to move on and release the stuff I've been holding on to so tight. I have huge plans for the next PJ Day and bigger yet for the one following... and so on and so on... Maybe I need to retire and then start making a real change in the world rather than keep trying to make a change under someone else's misguided bureaucratic shackles. I can make a difference and see it within my short little lifetime if I'm the driver of my own car, and maybe this is the nudge I needed. I'm still having a very hard time emotionally with this.

I am really hating this moment of time right now... probably more than actually being sick in the hospital. At least when I was sick in the hospital I knew that the people I am dealing with truly had my best interest in mind, whereas now I feel this is quite a different situation. All I can say is thank God for my previous boss (who just retired last month) who knew my work ethic and knew that I would do anything for Parks Canada, who stood in my corner for the last two years. Thank you Carolyn D.You are a true living angel, and we are all at a loss due to your absence. I know how happy and free you are though when I see you walking down the street, so it all happens the way it's supposed to happen.

Time to move along

I haven't posted anything for a long long while. I've been trying to get myself closer to normal and this in turn takes away from my time at the computer. It's time to move this forward though and I am starting right here, right now.

My sis, booked the Activity Centre for March 01, 2013 for our next PJ Day and I have a few things that I'm massaging in my head as far as raising awareness and also raising funds. I have been hearing of way too many young people getting diagnosed with this crappy disease that is normally a fifth decade of life disease. This has to stop and in my heart of hearts I think we can stop it by stopping and focusing on all Autoimmune Diseases, not just this one. I will continue to make this site a place where Weggies can come and get some references and feel more empowered when they are meeting with the myriad of doctors that becomes the norm in our lives after diagnosis, but I am focusing my efforts on pushing the right buttons to get more research into finding the common thread of all autoimmune disease. I feel that we can find this in my lifetime. I  want to go to my grave knowing that my beautiful little girl is safe from the genetic time bomb I have passed onto her.

This is my mission, and I will work to that end until my dying breath.

(Al, I know you're up there nodding your head because we had a very similar long term goal, so start pushing some buttons from your end buddy, let's make this happen)

Love ya Al!

I just found out yesterday that another dear friend who I feel very close with yet have never met in person has passed to the other side due to complications from Wegener's.

I'm shocked to the core.  I felt like someone kicked me in the gut when I found out.

My dear friend Al Swanson has brought wisdom and a sense of calm and control to so many people in the throws of a new scary disease threatening to obliterate any sense of normalcy out of ones life, and perhaps even ones life itself. He was a very wise, kind, generous man, and I feel blessed to have had his energy touch my energy on this planet... even if from thousands of miles away. I feel so bad because I've been ignoring my computer for the last several months in an attempt to regain my life, and I feel like I didn't have a chance to say everything I wanted to say to Al. We still had shit to do. We still had conversations to have. I still needed to learn more from him and have an opportunity to make him shake his head in disbelief with something crazy I haven't come up with yet. We still needed to compare and boast of the beauty of our respective stomping grounds.

My heart and thoughts are with Al's family, of whom he spoke with such love and respect and admiration. We have all been lucky to have been touched by Al's wonderful sense of humour, and enthusiasm to share himself with anyone who was open to it. Eileen, thank you for sharing him with the rest of us Weggies, and Al, we'll hook up on the other side and finally get together for those cocktails we kept talking about getting together for overlooking the mountains.

Love you buddy. Thanks for ... well, everything!

m

On a more positive note

OK, so I had a little cyber freak out on my last post. I am a little embarrassed but I stand by my opinion. I might have presented it a little better but it still makes me angry.

Now to change the mood a little.

I just saw my super rheumy, Dr. Yacyshyn and guess what.... the first Vasculitis Clinic in Western Canada is up and running. She did it!!!! So first Monday of each month at the University of Alberta there is a Vasculitis Clinic. If you want to go, you need a referral from your GP and a transfer of records from your rheumatologist or medical quarterback for your disease (nephrologist, respirologist, neurologist.... you get the jist). This is so cool and such a huge difference from the void two years ago when I got diagnosed.

As for me. On paper I look 'beautiful' according to Dr. Y. And I do. My liver function is elevated but nothing to freak out about, but other than that I look like a rock star (actually with the elevated liver functions I probably look more like a rock star.) The problems I'm dealing with now are drug related. Weaning off the stupid pred is so much harder and so much more than I ever imagined.  It's done a number on my brain as well because I ASSUMED that as you get closer to normal functioning and closer to remission things should get better not worse. Trying to get off the pred makes things worse. But like everything else in life, just gotta bite the bullet and put my big girl panties on and suck it up. After a quick calculation today I figured that if things go smooth and there are no complications or issues I can be off the pred by March 2013. That'll be right after our next Pajama Day....

On another unrelated note, Dr. Yacyshyn gave me a tip for a great pediatric vasculitis doctor in Eastern Canada for those of you who have been reading this blog and are the parents of kids with Wegener's. Her name is Dr. Suzanne Benseler and she comes highly recommended by my super doc.

A little red cheeked

I feel a little embarrassed for not posting for so long, but I have a reason. I also have a reason for getting on here right now... all in due time.

My reason for being absent is that I am getting a full on '$#!^ kicking' while weaning off the pred. I must admit it was at its worst when I went down from 7mg. You've already read that if you hang out here, but it really did a number on my body, my brain, and my emotions. I don't know, am I wrong to assume that as you're getting off the meds things should actually be on an improvement tangent? Well, it's not that way with pred. My wretched life saver. For all the good it's done in keeping me upright and alive, it sure has a heavy price to pay. I am now at 5.5mg (taking .5mg off each month) and according my my super doc, the adrenals don't start waking up until you're at 5mg.

There are so many thoughts that I have been wrestling with (nothing scary) and as I sit here and write on this blog again, I really want to share them all, but then it would turn out to be yet another novel type entry, and I wont subject you to that.

I am writing for a reason though. I just heard a story that shook me to the core. Reinforced the idea that I'm one of the lucky ones because I'm still here - raising shit, and causing all kinds of trouble. Apparently though that's not enough, I need to stir the pot more, and more and more, until there are no more senseless deaths from this stupid disease. I think one of our biggest problems and obstacles is the fact that a) this is a rare disease that masquerades itself as a common cold, or flu, or chest infection, or ear infection, or eye infection or throat infection... and regular doctors who either missed rare disease day in med school or are not listening to their patients and treating them like a hypochondriac or just another number or means to a living for them are missing diagnosis and in some cases letting people die. It makes me so so very angry, I wish I could explain it in words how this gets me to the core. Another problem is that kids are dying undiagnosed because the doctors that might know this disease from a textbook would think that it's a disease for people in their fourth or fifth decade of life. Well Charlie, that's not the case anymore. If you check out the results from the Weggie Survey http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96ekw28_3d - out of the 741 Weggies that have answered, 10 are under the age of 12years old and 81 are between 13 years old and 20 years old. That's 91 kids that if they ended up under the wrong doctor might have died. I just read a story of a 17 year old in UK dying from it, getting tossed back and forth between doctors and told there's nothing wrong with her, she ended up in a coma and then passing away a day before they were going to give her plasmapheresis, I know of a two year old diagnosed with WG and now today I heard another horrible story very similar to that of the 17 year old in the UK, but this one is way closer to home. It absolutely infuriates me. This is a scary but treatable disease, and people should not be dying because of lack of treatment. Since diagnosis two years ago, I've heard of at least 10 people dying from it, and most of these cases are either due to under-treatment, over-treatment, or complications from the treatment.

I find it so strange that in order to survive you have to be lucky enough to land in the lap of the right doctor or team of doctors. We're super unlucky to get the disease in the first place if you look at the stats, so luck at that point is not really on our sides. I have now met too many people dealing with docs who don't care, don't try and make them feel like horrible people for complaining about the pain that comes along with this. And if you haven't been there, let me tell you it's a doozey. So what do we do to eliminate the survival rate that's dependent on chance? I'm so crazy lucky to have landed in the lap of Dr. Zia and his team, and now to have Dr. Yacyshyn who is the best thing to come my way since diagnosis.

What do we need to do to take this horrible thing and use it to make a change for the better? How do we save more people from ending up on the wrong end of the life spectrum? I will not rest until I see something positive and good, not just for my family but for many people, come out of this. I promise.

2 hours later:  I have now thought about it for a bit and let myself cool down from being so upset, so I have to say that I get it from the doc's perspectives. They are regular people like everyone else, and in the experience of their career if someone presented with said symptoms, of course you'd go for the most common of possibilities when diagnosing. But I think if you see someone keep coming back with the same symptoms and they're not responding to any treatment, and the person is deteriorating in front of your very eyes, then it's one of those moments when you as a doc need to dig deeper and help that person get well, find a diagnosis and get them to the right experts. What also irks me is specialists who refuse to consult, to listen to symptoms and treat someone with a life threatening disease like any other patient dealing with inflammatory issues. This is where under and over treatment come in. I'm watching a friend right now dissolve while her specialist is dilly-dallying and ignoring her and has her on the most insane pred wean regime I've ever heard of for a WG patient. If you scour the forums, you'll quickly learn that too quick a pred wean is a very likely suspect in triggering flares. From listening to her symptoms I'm so worried that she is in the midst of a flare and her support system (medical) is a little shaky with the main wheel missing three and a half bolts.


But for the regular docs out there dealing with millions of colds and flues and chest infections, and ear infections, I don't begrudge you, you are working a hard job and it's so very repetitive. I would also be going to the most obvious answer first, but when the patient keeps coming back and back and back, take notice.

Celebrating the small victories

Who would have thunk that something as little and seemingly insignificant as one's Eustachian tubes would generate so much joy. Well, they have in my case.

I had completely given up on my sad little Eustachian tubes but I just found out from my ENT that the tube in my right ear has gone the way of the Dodo, and now while I enjoy the sunny world of my most therapeutic place on earth, my second ear is fixing itself up. I can once again whistle out my left ear (the one that still has a functioning tube left in the eardrum) which means that my Eustachian tubes are no longer inflamed shut... a condition I was certain would be with me for the rest of my life. The joy from this one turn of events is so tremendous and a tiny little sign that things are moving in the right direction that I've been so happy and not focusing on the horrible feeling of trying to get of the prednisone.

I'm still at 6mg about to go down to 5-6 alternating in about a week and I dread the next phase of feeling like a useless bag of poo, however I am treading in the pool of joy over the Eustachian tube development...and did I mention I can whistle out my ear... how's that for a killer party trick.