Happy New Year

Here's to 2013 being the year someone finds a cure for autoimmune disease. I know it's a very high hope, but without hope there isn't much chance of anything happening (even though 'hope' was one of the things found in Pandora's Box).

I promise to do everything in my measly little power to make that hope turn into reality.

All the very best to all of you and your families and may the grips of Wegener's be a distant memory in the not too distant future. I hope 2013 is full of constantly increasing health, love, laughter, joy and prosperity (however you define it.)

From my family to yours. Lots of love.

Marta

I need to give you an update

Hello friends. In my usual overly verbose way I need to give you an update on what's going on.

I just had a new member of our very elite club contact me regarding the book. Welcome Harry. This contact made me realize that there needs to be an update on how the various forces have changed my tangent somewhat but the overall objective is the same. That being that one day we are rid of Wegener's but now the focus has gotten wider in that one day I want to be witness to the elimination of all autoimmune disease.

Back to the book. I have collected some very forthcoming stories from some great people who were willing to share in order to help others.  The purpose of the book was to have somewhere where newly diagnosed people can go to for advice, hope and to see that there is indeed a light at the end of the tunnel, and it's not a train. I couldn't afford to self publish and the vision I had was not what the 'self publishing' companies offered, so it involved some solid work on laying it out (I'm not afraid of that and it's in my realm of skills, but the energy bit is what throws a wrench in the works.) I decided that if the objective was to give access to more information to people, it made no sense for me to be holding on to these stories while more people are getting diagnosed each day and looking for information. When I got sick, there was very little out there and compared to some of my dear friends that have been dealing with this for decades, I was lucky. I decided to put the stories on here so anyone can access them and use them to help with their own situation. I am missing a couple on the site because I didn't get a reply allowing me to post them from their owners, but it gives a good perspective. I haven't completely written off the book, but it's on the back-burner as I have chosen to channel my energy in a direction that I think is more likely to help us with our goal of eliminating this sucky disease.

Find the Common Thread. That's what I feel with all my being is the answer and will lead us to a cure for ours and the 140 other autoimmune diseases out there. We can not only work towards saving the rare lucky bunch of Weggies but millions of people (one in five), save billions of dollars from our overburdened health care system and open all of that infrastructure for other diseases once we get out of the picture. We (autoimmunies, not just Weggies) are a big burden on the health care system being chronic and many of us incurable.  I also think the answer is very close to the surface. We don't have to dig deep, just scratch the surface because so many people are working on their own disease and if we manage to get them to pool their efforts and data, the answer is not far. It's such a win win situation. AARDA (www.aarda.org) is doing this work in the US but not much happening in Canada.


I have found my dharma and it took living with a crazy disease for a while to get to it, but now that I know what it is, I will do everything I can to see it materialize.

I ramble on and on and I hope what I've rambled on about here makes sense. I admire people who can relay their thoughts in a few words. It's an art I have always admired but never achieved. Please forgive me.

Busy little Weggie Beaver

I'm just checking in to say I'm doing all that I can to get us closer to our goal. I've sent out 6 letters and have dozens more to go. I hope that someone reading them has the same 'aha' moment I did when I read the Common Thread article by Dr. Noel R. Rose (Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD) who incidentally has agreed to help us out with our next PJ Day here in Jasper. I have invited him to be our keynote speaker in hopes that he can inspire that many more people. You have to read this to hear it from the Rose's mouth: http://www.aarda.org/common_thread.php.

Things are coming together slowly but I'm still in search for a computer wizard willing to share some of his time and aptitude for a good cause. Once I get the person, I know - KNOW, we can start making some good money that will go towards research to find the common thread, and other plans I have (none of them involving my pocket).

Physically, things are "aaaight" - I had (as well as Brian and Hana) that horrid stomach flu a week and a half ago and although not feeling violently ill since the initial bout, I have a feeling it messed things up and is hanging in on a low key sorta way. The only thing that's crappy about that (other than feeling like I have no spoons and just not very healthy) is that it can cause a flare by making the immune system be in defend mode for such a long time. I've been feeling other symptoms the last few days that are not flu related but deeper. They're nothing to write home about but give me the hibby jibbies because I so don't want to go there right now. I'm at 3mg of pred and really want to get off it for a while to let my adrenals have a little more life. So I'm keeping a watchful eye on how things progress but I'm not obsessing about it and I'm hoping that it just goes away. I'm deaf as a door knob too so maybe when it goes away it will unplug the eustachian tubes and I'll be able to hear again.

Off to write a few more letters. Wont know if I don't try.

My Inner Ninja - Classified

Just listen to the words. My filter is in full swing.

https://www.youtube.com/watch?feature=player_embedded&v=RwBb3byQhvE

My FTCT filter

Funny how when you get something in your head and know it will be what you're focused on for a while to come, everything you perceive after that point goes through a filter with that title on it.

Now everything I see, everything I hear automatically goes through my - how is this going to help us find a cure for autoimmune disease? - filter.

It reminds me a bit of when I went to Bulgaria for the first time after we ran away when I was a kid. I was 18 and fresh out of High School, feeling like the world is my oyster and went for a summer holiday back to the country I lived in until I was 10. I realized the moment I got off the plane that even though I was speaking fluent Bulgarian, there was this almost imperceptible nanosecond delay between my thoughts and my speech. My brain was translating everything from English thoughts to Bulgarian words. It was a cool experience to be witness to this brain functioning in living colour. Then, about two weeks into the trip, I went to sleep one night and dreamed in Bulgarian through the entire night. I woke up and was pleasantly surprised by the experience but when I went downstairs to talk to my family, I realized that I was now thinking in Bulgarian, and the nanosecond delay was gone. My filter magically vanished in the night and a new reality was upon me.

I hope that one day I will be able to have my dream come true and wake up to a world without autoimmune disease. I hope that this will happen and I can consciously relieve my new filter of duties. I hope that no other people have to wake up one day fighting for their lives and say "so tell me again, what is an autoimmune disease, and why is it killing me?" or " doctor just told me I have arthritis and they can't do anything about it and I just have to live with it," or "but I've been on chemo and steroids for almost three years now and it sucks", or "I want my life back".

My Parks Buddies last PJ Day. Love ya guys.

We will change it together. Only by teaming up can we make enough noise for people to hear and start doing something different. Like Mr. Einstein said "insanity is doing the same thing over and over and expecting different results". We need to pool our efforts and look for the commonality in all of the branches. We need to start talking together, getting together, learning together, finding together.

Next PJ Day and hopefully the other stuff that will go with it will be amazing. If you know of any super smart computer geniuses, ask them if they wanna jump on board and help us by sharing their brain power. I need to put together our revenue generator.
 

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.

Worm hole

I feel like I've been stuck in a worm hole and time has taken on a whole new quality. It seems to be flying by at phenomenal speeds and I'm just stuck watching it warp by.

I've been conspicuously absent from here and the Common Thread blog and have been thinking about getting on and writing my ever present swirling thoughts down but these impulses to write always hit me in the middle of the night when it would be completely not feasible to get up and start things up while the rest of the family is in their fragile sleep mode.

I pulled through the first annual Pajama Day and it was a screaming success. I spent most of the day on February 29th covered in goosebumps and on the verge of tears, completely overwhelmed by the support and sportsmanship of my beautiful community. I put on my PJ's (my going out PJ's) that morning and dressed Hana in hers hoping that there would be at least one other person out there wearing theirs. Well to my complete shock and surprise, I got to the school and saw a number of the parents dropping off their PJ clad kids while wearing their own PJ's. The feeling and PJ wearers just snowballed from that point on. It was a magical day. Truly.

I spent most of the energy I had stored for the whole month on that one day but it was so totally worth it. I've been sick with a cold since then and it's just now starting to go away but again, worth it. People are telling me how wearing their PJ's all day changed their perspective in so many different positive ways.

My other issue right now is that I'm weaning off the pred, and it's lower than what my body makes but higher than what is needed to get the adrenals to even start waking up, let alone making their own corticosteroids. Soooo, the crappy side of this equation is that I wake up with no energy and the energy levels just drop from that point on throughout the day. There are also constant aches and pains throughout my body - all the time - that I am attributing directly to the wean. I think the disease is at bay now - I'm scared I might jinx it by saying so because this stupid disease can turn on you at a moment's notice. I have this feeling now in my brain that the pred wean might be one of the more difficult things throughout this process. I can really feel it, and I know that if you misjudge it by even a little bit you can set of a flare and be back at square one within a week. It's happened to a Weggie friend, and I do NOT want to go down that road.

There, I just got my mandatory whining in - sorry. I try very hard to keep my wa-wa's to myself, but I assume that there are other Weggies reading this and it might be something they might also be feeling and would want to know that it's not the exception but more the norm.

Sorry bout my absence

Wowee.... So all of this time that I've had a secret little hate-on for pred (yes, I know it's keeping me alive, but I still have a little love-hate relationship with it) all of the sudden I'm feeling an appreciation of the magical elixir properties of the wretched drug. As I posted earlier I had gone down to 6mg a week after my last infusion. Well, holy crap. I've been dragging my ars around like it weighs a ton (it's up there compared to old 'normal' but it's not at a ton yet.) I haven't felt so tired and lacking energy as I have the last few weeks. I had no idea how much energy pred gives you in your day (again I knew this but was avoiding thinking about it - our bodies produce about 7-10mg of the equivalent corticosteroids that pred gives you but your adrenals don't start to wake up until you're at about 5mg, so until they wake up, you're (I'm) functioning at an energy deficit - big time.) Thankfully my wonderful doc happened to be on here and noticed that and gave me a call to say 'let's try something a tad more conservative' - apparently at these lower doses 1mg is a big drop - I knew that but was trying to see if I can be one of the magic ones who pulls it off.

No way!

So now I'm doing one day 6mg one day 7mg for a month, then 6mg for a month, then 6mg one day 5mg the next for another month and I go and see my super doc so we can assess further. I find it trickier now with the pred wean than it was just dealing with taking all the sick drugs. Ughhh. But I'm moving in the right direction and keeping my mind focused on some other stuff - which for me is very therapeutic.

Now, I got a couple of stories from two more amazing fighters. Thanks you guys. I'll post them in the next day or two (unless I manage to sneak that in today). Thank you from the bottom of my heart for sharing your stories. I've received feedback that the stories on here are helping others who have been diagnosed, so we're accomplishing the overarching goal - thanks to you!

Another Weggie Story

I have just added another story to the Weggie Stories page. Thank you Ian for sharing your story with everyone. I know it's a little tough putting yourself out there, but it gets easier and even moreso when you know that perhaps it might help someone who's just starting on this journey.

I've been trying to take a few days and spend my precious spoons on myself and my family. Easier said than done but I'm trying.

I'll get back on in a day or two. Feeling like I'm in overdaft on the spoons right now.

Strange Sounds

What's that strange sound I'm hearing? Oh it's the sound of the snowball rolling down the mountain. It's the  Find the Common Thread Pajama Day snowball and I'm loving what's happening. LOVING IT! So keep it going friends. Start a little 'viral' PJ oriented activity in your neck of the woods to raise awareness for autoimmunity (nothing crazy though, when I say viral I mean through the web and word of mouth - just to be clear.) Find others hiding their pain in secret (or not so secret if you're me) not knowing how many of their friends are doing just the same. Lets all get together and stand up for the most neglected disease group out there - autoimmunity. Stand up in your PJ's on the 29th. Colour your finger red and make a fashion statement for Autoimmunity. We can post our pics and video here or on www.findthecommonthread.com - When this is bigger than any of us imagined, we can all say that we were there when it started.

RTX check, UofA talk check, remission - checking

Well, doneski. RTX done yesterday. Knocked me on my buttocks but it's done, and again I wave nostalgically to my dead B-cells with each toilet flush. I was quite emotional today and realized that after round one, two weeks ago, I was also quite emotional after the infusion. Me thinks the pred has figured out a way past my Bulgarian defence system. I was talking to Brian today about how totally lucky I've been with that aspect of the pred side effects. I've heard of some really bad horror stories about pred and emotion and mine has been kept in check throughout the last almost two years. I do feel it now though. But as I mentioned to the Medical Anthro students at the UofA tonight (they were very gracious and didn't make fun of me once - thanks you guys if you are reading this) I've been primed to notice unnatural emotional reactions just from being a goil, and having to go through PMS (a long lost and un-missed acquaintance, PMS that is).

I haven't talked to my doc and after the chickenpox freak out two weeks ago I'm hesitant to bug her again. I've decided to make a couple of decisions on my own using my experience, and the knowledge that I've acquired thus far. I WILL go down on the pred by 1mg. I was holding off until after the infusion - just in case - just in case what I don't know, but I thought I shouldn't change status quo before such a drastic treatment. I was meant to go down at the beginning of the month, so I'm going to bring it down 1mg tomorrow.  I've also decided that I'm going to stop the Imuran until I get home and get a blood test. I haven't had any here in the city (other than the v-zoster one) and even if I did, I wouldn't have access to the results (Dynalab won't give them to me) - I love living in a small town. In Jasper I can go and get the results the day after I get the blood test at the hospital. I can see where my White Blood Cell count is at and then decide if I go back on Imuran now or wait a bit. I just want to make sure I don't deplete my immune system completely because then I am very susceptible to potential invaders that I can't fight off. Last time (in March) when I had my RTX, I completely stopped taking cytoxin the day before I got the infusion and then didn't take any chemo for a few months, so I don't think that there would be any issue with stopping the Imuran for a bit to make sure I don't deplete completely.

There, I'm being a pretend doctor again. But I have my own best interest in mind and plan on living a very long and hopefully healthy and normal life, so I'm not just being foolish. I'm making educated decisions based on more information than most docs (other than rheumys) have on this disease and on knowing my body and having the experience with Wegener's.

Read some more Weggie stories

Since there is so much on my little plate (apparently that's a good trick to loose weight, eat from little plates) I just don't see being able to publish the book in the foreseeable future, I've asked some of the people who have submitted stories if I can post their stories on here. There are more at home, but I can't make Brian look through my disorganized email folder and send me all of them. He's sent me a few and I've asked the owners to post their stories and they have graciously agreed. Thanks guys. To read their stories go to the tab above that says Other Weggie Stories. We're making a difference, one little 'ouch' at a time.

Well I'm stuck in the city

Found out that I don't have any v-zoster antibodies. Blah. So I'm in the city, separated from my family waiting to see if Hana gets anything and if I get anything. If I do, then I have to go on an antiviral and see where that takes me. I've been checking for spots every day and so far so good. I'm also feeling that with each passing day I'm a little bit more out of the woods. 28th will be the full 21 day gestation period, so that will be the magic date. I still go on the 23rd for RTX number two and on the 24th to the U of A for a guest blah blah, so things overall are moving smoothly aside from this one little pox speed bump. Thanks friends for all of your support.

Peace y'all.

Don't Panic

If you were an intergalactic traveller and had the Hitchhikers Guide to the Galaxy in your pocket for advice, one thing you would know (because it's written in big, bold letters on the front cover) is DON'T PANIC. Well, I apparently lost my copy of the Hitchhikers Guide because I panicked last night. Big time panic. I'm calmer now, but man did I ever get worked up. I found out that Hana's friend who she hung out with on Saturday got spots on Sunday and was diagnosed with chickenpox on Monday. I also saw her friend on Saturday and got all of my B cells blown to smithereens on Monday. So I panicked.

Why did I panic? Because there are two things I've been afraid of contracting since being immune suppressed - pneumonia and chickenpox. AND chickenpox in an immune-suppressed folk like us Weggies, can lead to pneumonia (and encephalitis - ughhh). Again, I panicked cuz those things can kill us. I know, I know, it sounds so melodramatic, but I've been really good and calm about the whole process so I'm allowed to have a freak out once during the disease process. This was my freak out. When your B cells are gone, your immune system goes back to being where it was when you're a newborn, not much memory of what you've had or have been immunized against. I know that there are still some B cells that aren't killed so I'm hoping I have a few of those that can pull me through this, probably overblown, crisis.

I spoke with my doc and she ordered a blood test to see if I have antibodies for the virus and if I don't then we'll treat with blood product to protect me (IgG - I think). We'll hopefully know by Friday where I'm at with all of this and where we go from here. We will separate me and Hana for a bit just to be sure - which is a total bummer. Total! But gotta do what we gotta do to make sure we're around each other for a long time in the long run. I hope this doesn't mess up my RTX treatment ( I have a second round in two weeks time) as that will be a huge waste of time, money (the treatment is worth $10,000) and health. 

I panicked my friends too on Facebook, so I feel like a bit of  a putz. There's nothing I can do about that now though.

I keep telling Hana that a big rule in life and survival is DON'T PANIC. You can never make sound decisions or control your body or surroundings if you're in a state of panic, apparently though I should listen to my own advice a little better.

Fastest Girl or Best Sport - which award would you rather get?

Best Sport. That's my answer.

I was at a function the other night and the awards were being handed out for fastest male and fastest female in a fun ski race, then came the Best Sport award.... I thought about that after, and figured that this is the award I'd like to have for the race of 'life'. Why? For a couple of reasons. To be the fastest male or female depends on having a collection of qualities and attributes, some of which are beyond one's control, whereas being the best sport is totally and completely within anyone's reach and is completely dependent on how you approach and perceive life. So it doesn't matter what your situation, what your physical shape, what your health condition, 'Best Sport' is within your reach, which is why I think that this is the award to get and the award to strive for. We can all be best sports and imagine what kind of awesome place this planet would be if we all worked on being the best sport. Besides, when you get fastest male or female, you might be going too fast to notice what amazing things life has to offer during the journey, and you definitely wont have enough time to stop and smell the roses, or see the beauty of each individual snowflake. So kudos Dan. May we all be the Best Sport just like you.

My shoes got their innogural wearing on
the day of my RTX infussion. Raging Baby.

Today I had another drip drip drip moment (moments - seven hours worth of moments). You know what, even some nurses don't get it. I asked one if most of the people in there are in because of autoimmune diseases and her reply was that no, all kinds of doctors send people for infusions... nephrologists, respirologist, neurologists.... But then I asked a few people around me what they were in for and everyone I spoke with had an autoimmune disease of some sort and were sent there by different doctors. Then  I spoke with a wonderful lady beside me who had MS and another disease that was way too long for me to remember the name but it was basically a distal neropathy (both AI diseses) and we started speaking and I gave her all of my babble that has made me so passionate about my new adventure and after a pause (we were both getting RTX so we were both there for a loooong time side by each) she looked at me and said - "I've never thought of it this way, you have a very good point". That's the thing, we don't think about the effect AI disease has on our society, and how many of us there really are out there, and how closely we're all related, and how few people really get how AI diseases work and how they affect our medical system as a whole. We are standing on the edge. We need to get together and push for a cure, rather than just treating our symptoms and making us weaker in the long run because of a myriad of nasty drugs we have to take for the rest of our lives to keep us alive.

More cool stuff to come. Like really really really cool stuff. Stuff so cool that I might actually get to meet some of you in person in the not too distant future. How's that for a cliff hanger?

Now I go to bed and rest while my B-cells are the victims of genocide. Tomorrow a toilet bowl will be a mass grave of the innocent bystanders who have been confused by another drug intended to make me stronger (H1N1 vaccine). Peace out friends.

Here we go.... best year ever....

Since you can't hear the tone in my voice I'll just clarify that there is a bit of a wishful thinking tone as I say that. I know it can get worse, it can always get worse... no matter how bad  you think you have it, it can always get worse, so I try to enjoy all my moments of relative health that I am given. I am also thankful for the fact that I'm at that point in dealing with this disease where - although there will always be an element of uncertainty (moreso than the everyday life type of uncertainty) - I am getting more acquainted with the goings on with my body and how it responds to the drugs and to the disease process.

My apologies for the hiatus. It's been a crazy busy holiday season, and well, guess what... there's a little wildfire within that needs to be put out by some super expensive designer drugs - my only option. As I mentioned before RTX and CTX are the only big guns that will put this beast into remission and I've done my life's allotment of CTX so RTX it is. The positive of it - no hair loss. I now have crazy Einstein hair, too bad the brain ain't following suit.

So, I'm going in for another zap of RTX in a few days, followed by another one in a couple of weeks. There go my B cells, about to get obliterated again. I forget how it is to be completely immune compromised and the dangers that lurk everywhere when your body can't fight anything - a cut on your finger, a scratch on the roof of your mouth, a fingernail that breaks, a cold, a flu, pesky little wart virii... the list goes on and on... gotta be careful getting a massage, can't ever go for a mani or a pedi (not that I ever do that anyways). My mom asked me if she could take Hana and me to Puerto Vallarta in February and I begrudgingly have to decline as I will be completely immune compromised at that time. It's time to lock myself up in the house again for a little while (a little while has taken on a whole new meaning since I got sick).

I will be playing on my computer as energy permits and continue on our quest for the 'holy grail' of autoimmunity. I now have a Facebook group - FIND THE COMMON THREAD, as well as the site where I'll put the posters and supporting info as it gets done. There will be another interview on Global but this time it will be about the common thread gig. This will be later in January.

Take care my friends and keep it real.