Wegener's slide show

I had this elsewhere and the link is now dead. So I went online and found it so that we all have access to this if we need to explain to a friend what our crazy disease is all about. I will also make a little booklet type thing so that we can print it out and understand better. I'll try and laymen-ize it. Wish me luck.

<iframe src="//www.slideshare.net/slideshow/embed_code/key/aCvWknCw06kxVM" width="595" height="485" frameborder="0" marginwidth="0" marginheight="0" scrolling="no" style="border:1px solid #CCC; border-width:1px; margin-bottom:5px; max-width: 100%;" allowfullscreen> </iframe> <div style="margin-bottom:5px"> <strong> <a href="//www.slideshare.net/ameenrageh/granulomatosis-with-polyangiitis-wegeners-granulomatosis" title="granulomatosis with polyangiitis (Wegener’s granulomatosis) " target="_blank">granulomatosis with polyangiitis (Wegener’s granulomatosis) </a> </strong> from <strong><a href="https://www.slideshare.net/ameenrageh" target="_blank">Ameen Rageh</a></strong> </div>

Another warrior gone

I haven't posted for a while. That's usually a sign that I have a little extra energy and am diving into things other than the blog. But rest assured that all the things I am doing on the side of this are actually complimentary to it. I am keeping myself busy with just trying to be a good mom, a good wife and member of this family. With the permanent shortage of spoons, this alone is somewhat tuckering, but I feel absolutely compelled to use any extra energy towards my little obsession - the utter elimination of Autoimmune Disease.

Why? Because it kills. And nobody is standing up for us because we are segregated from each other. Cancer made a very smart move by joining forces. Suddenly the death toll becomes frightening when it's a group of people. Autoimmune affects more people than Cancer, takes away quality of life, sometimes crippling people permanently, removes healthy productive individuals from the work force, and kills, and kills and kills.... either directly from the disease or indirectly from damage caused earlier or drug side effects. Either way it kills more people than anyone can imagine as there are currently no epidemiological studies on AI as a disease group, and certainly many related deaths are misreported and statistically added to other groups. Jim Flaherty's passing was reported as a heart attack, when in fact he was suffering a nasty AI disease and on pretty nasty drugs. Many autoimmune disorders can lead to heart problems due to the inflammatory process going on inside the body. And this is why we are left behind in the dust when it comes to funding, support, and research.

Yesterday, Phil was buried. Another victim, giving up his life too early to Wegener's Granulomatosis. It so sucks. Phil was the first Weggie I met face to face, and we had a great time sharing horror stories and successes and sharing survival tricks, absolutely necessary for life with active WG. Your body is a 10 ring circus - all the time. There is always something going on, and any tip, trick or piece of advice on how to minimize the pain and discomfort, are a godsend. Phil was also the first to respond to me when I joined the WG Forum. Always helping that guy.

Phil and I went up to Marmot Basin, before it opened up, and he got to see where my happy place is. I remember being 'talked to' on the forum for going skiing with my weakened pred bones, but for me it's more than that. It's a place where my soul can recharge, where my body can suck in as much healthy, clean air and my humanity can get a thrill again of wind against my face. I am with friends, in paradise when I am up there. Once he saw the view, he understood. We had dinner the following night with his parents in tow, and had some philosophical discussions on which we didn't agree, as is to be expected when meeting someone new. We still had fun, and the next day Phil and his parents departed towards home in Saskatchewan. Over the years, Phil and I have had our moments of mutual support, long phone calls, and yes scraps. We fought sometimes like cats and dogs, and Phil had this amazing ability to get me going so bad that I would lose control of myself and do stupid things on-line. That's my own crazy issue.

Phil however was a fighter who only saw comfort in his efforts to help others. Sometimes his comments would misfire, but he was always there, always welcoming and always wanting to have the answer that might be the magic bullet that'll pull you out of the darkness. He wanted to help everyone, and if he couldn't help you with your crazy ass disease, he'd try and help your spirit make sure it gets into Heaven. This was the biggest point of contention between us, but in hindsight I am sure the things that irritated me so, were his way of ensuring his soul gets into Heaven. He did only good, in his mind everything he said or did was directed to good, it's just that eloquence is a skill that many of us don't posses - I'm at the front of that line. I am sure I get many people's hackles up, but I get defensive because my intentions are always good, and I think this was the case with Phil as well.

He helped a lot of people. A lot of people. He is now up in Heaven looking down on us, screaming at the top of his angel lungs to let us know what 'the answer' is - cuz he knows it now - but we are only going to find it if we work hard.

As a final image on this post, I imagine Phil and Jack and Al and Lightwarrior (Christie) up there, chilling around a little table, arms randomly slung over the back of the chairs, leaning back and talking about how it had to take drastic measures for them to finally have a coffee together. They are our guardians now.

You all behave up there ;)
See you on the flipside.

Off again, on again

I've resurrected the book project we all started a few years back but it has morphed into something that I feel I need to do anyways, so it will be killing two birds with one stone.

I am writing my story and the other stories will be part of the the story I'm writing. They will get inserted into the spot of my story where this popped up on the timeline of my personal experience. If you'd like to contribute your story to the mix please feel free to do so. The instructions can be found under the "Book" tab above and you can find me on Facebook and contact me that way if you'd like.

I've gotten a few new ones and I'm thrilled that we can make this go further, reach more people and hopefully make a positive difference somewhere along the way.

Panic not! I do have an editor already working on my ramblings. They will be less disjointed than they are here :)

Noteworthy moment on the road to normality

It's been a while but I just had noteworthy moment and had to share with people on the scary end of this ride. The steps toward that normality, that seems so elusive on some days, are small and sparse,  but they do come. Once I get one little element of my old life back I get the zango to push forward... and each achievement is much more special now in something that was perhaps taken for granted in my pre-Weggie life.

I've managed to shed enough pred pounds and am one step closer to 'normal'.

Today I put my Wedding Ring back on my finger after a three year hiatus.

A very special moment

Here's a link to a video that meant so much to me this last weekend, on our second Annual PJ Day. The Grade One classes of Hana's school (Thanks Mrs. Morgan and Mrs. Koss, and JES) sang a very special song from the time I've been dealing with WG. Hana and I used to cuddle together and sway to this song in the early days and as time went by we could dance to it together and the words, although simple to some, really pushed me forward. I indeed felt stronger, bit by bit, and the more strength I gathered the more I knew what needs to be done. How we can change things with our voices, standing together as one. Together we are something else, something bigger, we are strong, and we can overcome this sly beast of a disease that until now has had it's strength in being segmented. By bringing all those pieces together we can now look at the beast as a whole and see where his weakness is and hopefully eliminate the problem so many have to deal with daily, just by getting together in on the fight against autoimmunity.

So when I saw these kids performing it I knew how much strength it had given me, and I could see things turning for the better already. Together we can fix things, by all of us finding the best part of us we can find and use that part to guide you. We all slip and fall sometimes, but if we keep trying, we can change things and this moment inspired me this weekend: http://youtu.be/8yhAkA7TVk8

Hitting the US autoimmunies

Here's a little show we did today with Dr. Diane Dike. All I need apparently is someone who is willing to listen and then you can't stop me:
http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together--one-pajama-at-a-time

Going Global In Edmonton

Watch Global on Monday evening if you want to see me make a foo-ool out of myself. The amazing Su-Ling Goh is interviewing me about PJ Day. Hopefully we can get lots of people on board.

What does 'on bord' mean?

It means that regardless of what flavour of autoimmunity you have and support, you can put on your PJ's on March 1st and show the world that you're part of a bigger thing. Much much bigger than any of our individual diseases are alone. Together we can bring attention and we can push for research into the lowest common denominator of autoimmunity (which we still don't know about) and if we find that, we will surely find a cure not just for our specific disease (whatever it might be) but for all of us. Isn't that a wonderful thought?

If you want to do a fundraiser of any kind, put on your PJ's and do one and send the money to your favourite autoimmune disease charity that already exists. We don't want to take anyting away from anyone, we just want to show the world how very many of us are out there. Way too many but we still get treated like this is a 'rare disease' and get dismal medical attention most of the time, unless you're lucky and  have found a super amazing doctor like I have.

Let's change things and have some fun while doing it.

MONDAY NIGHT: It's now Monday night and the story didn't air tonight. Probably good too because I was a bit of a babbler in the not so good way. Didn't say half the stuff I wanted to but who knows how it will come out - Su-Ling is a pro and will do her best to make it OK. Will keep you posted.

BT up for PJ's

The awesome gang from City TV's Breakfast Television are coming up for PJ Day on March 1st to help us spread the word and get that much closer to finding a common thread and curing all of us autoimmunies - not just Weggies.

I'm so stoked that while doing the happy dance after I found out, I tweaked my back and have been hobbling along ever since. You know, I use to be tougher than that. I could do so much and not feel a thing, but now I jump once from joy and pay for ever after. It's OK though, this kind of pain I'll take.

PJ Day will become a global hit. It's crappy but more and more people are getting sick, and it seems like you really want to do something about it when you or someone you love and watch suffering gets whacked by the autoimmune stick. Apparently there's a whole lot of hitting, so we will all join together one day and change this shitty situation, and our kids wont worry about having to deal with the crap and take toxic drugs that ravage your body in order to stop our immune system from doing the same.

Watch out AI Disease, here we come.

Get your PJ's shined up

Back from an inspiring trip through China and now rearing to go for PJ Day.

Along with PJ Day I heard something today on Quirks and Quarks and now know where I would like to channel any money we raise for Autoimmune Disease. My body usually tells me which path is the right one and which is the wrong... the one of very few times I didn't listen to my gut, I ended up becoming a Weggie, ever since then I follow my gut, and this comment has taken on a whole new meaning.

Quirks and Quarks interview with Dr. Jayne Danska

and here's the poster for the upcoming PJ Day... plans are moving along. (click on the image to see a larger version)

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.