Friday, September 15, 2017

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="//" 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="//" title="granulomatosis with polyangiitis (Wegener’s granulomatosis) " target="_blank">granulomatosis with polyangiitis (Wegener’s granulomatosis) </a> </strong> from <strong><a href="" target="_blank">Ameen Rageh</a></strong> </div>

Thursday, October 16, 2014

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.

Monday, May 19, 2014

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 :)

Wednesday, November 27, 2013

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.

Sunday, March 3, 2013

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:

Thursday, February 21, 2013

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:

Saturday, February 9, 2013

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.