Here we go...

Be gentle, it's a work in progress, but start spreadin' the word. I'll keep adding if you pass it on. I'll have some posters on there soon.

Thanks friends. Every journey starts with a single step and here's ours. We've taken on a few in the last little while, not it's time to take one where we're calling the shots, not a stupid disease.

Find The Common Thread

Only moments away from the best year ever....

First of all a very Merry Christmas, Happy Hanukkah, Happy Kwanzaa, a great holiday in whatever you celebrate to this season, and the best ever New Year to you all. As some of you know I'm a strong believer of following your gut feelings, and my gut is telling me that this coming year will be the best ever.

Now for some news.

1. RTX has been approved by Health Canada for the treatment of Wegener's. Well we're a little behind (the US approved it last year for WG) but better late than never. Now it is not 'off label' use for Wegener's so if you have insurance it's a viable option... especially since the only two real heavy hitters to stop WG in its tracks during a flare - cytoxin (a.k.a. cyclophosphamide or CTX) and Rituxin (a.k.a. Rituximab or RTX) so yeah, we're legal on both sides now.


2. I'm almost finished putting together my supporting material for our 'change the world' moment. I will be directing you to a new site in the not too distant future to pick up your stuff for "Find the Common Thread Pajama Day" for Autoimmune Awareness. If you're not sure what I'm talking about here's the short version (I know, who am I kidding, I am incapable of writing anything in 'short version')...


... I think that the only way we as a society will make any significant - quantum leaps - forward with finding a cure or anything of the sort, is to widen the focus from our 'little' (not so if you're in it), rare diseases to looking at autoimmune disease in general and working towards raising awareness and finding a common thread for all AI disease. Here are some interesting quotes from AARDA (aarda.org)


"Autoimmune disease.......offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; "Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery."
• According to the Department of Health and Human Services' Office of Women's Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women's Health Information Center."

also....

"Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years. of age.

• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.
• Commonly used immunosuppressant treatments lead to devastating long-term side effects.
• The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients.

Autoimmune disease.....faces critical obstacles in diagnosis and treatment.

• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

February 29, 2012 - Pajama Day for Autoimmune Disease Awareness - Let's find the common thread! The wave will start with us and in a couple of years you can tell your friends you were part of the wave that started in 2012 and changed the world for the better.


I will continue to muse about Wegener's here... can't ostracise the already ostracised child. Us rare Weggie birds need to flock together and use each other's chemotherapy thinned plume to support and comfort each other. It's the best way to pull through to the right side of the fence. Feel free to contact me if you have questions (I don't know the answers, but I'm a great finder of the helpers needed - and I have plenty of opinions as you can see) or if you want to get involved in any way of raising awareness and getting the ball rolling on the bigger picture - Pajama Day. Find the Common Thread....

hiya friends

I'm sitting at a café, sipping a decaf latte and having a wonderful cranberry apple muffin. I have a doc's appointment and wanted to get a few things done beforehand, but all the stores are closed so here I am.

I've been so busy lately, but my mind is constantly mulling over the 'Find the Common Thread Pajama Day' concept. I will be putting something out on Facebook. I have an idea how we can all make ourselves known. How we can stir the pot. How we can make people stand up and notice. I have a logo that's been dancing around in my head and it's almost done, but it's gonna get us all united. Yup. I'm thinking it will.

I have other stuff I wanna talk about, but my time on this computer is running out so I will throw the other thoughts out in the ether after my docs visit today. It's nothing important but it's in there.

Peace

Pinker shade of life

Yup, 24 hour jobbie. Hopefully this wont trigger any flare type activities, but the worst of the the fluy part of it is over. I just have to keep an eye on what happens next.  I am getting another RTX infusion in January, so hopefully nothing significant that will force me to up the pred before then. I just want to get to feeling like old Marta again - wrinkles and all. On that note, it's funny how precious my previously dreaded wrinkles are to me now after the prednisone affair. I can't wait to see them again. They're startting to show a little, and some of them are a strange new variety, but anythng is better than the full moon pred face.

Back to the plans for changing the world. Baby!

It's not easy being green

Although I don't have Kermit's chops, I did share his lovely complexion in the last night and day. I don't think I like anything I've experienced less than emptying the contents of my bowels involuntarily with all the involuntary muscular contractions and body contortions that go with it. It has brought a couple of things to light.

One is how lucky I was to have been in good shape before getting WG. Now I'm in anything but good shape, and less than 24 hours of stomach flu has managed to knock me on my ass. So stay in shape, you never know when you'll need it.

Two is how lucky I am. How, you may ask. I've been in a couple of situations that are vomitously flamable, and I've been spared on both counts. I didn't have any nausea when I was pregers, and I've been super lucky in the last year and a half of daily chemotherapy ingestion. So yes - lucky. Now I'm in bed trying to regain my composure so that I can keep going on with our plan to change the world for the better.

Till soon.

Find the Common Thread - Jammies for AI Day

It's so obvious. So why didn't I think of it before.... chemo brain perhaps, pred head perhaps, just silly old brain perhaps (although the MRI I had last week shows I have a brain, and it's not affected by the WG fire - pheuf on both counts.) So give me a few days, and I'll think it through and put together some promo material we can all use. I'm on it. If you have ideas pass'em on.

Enter into my vision

So I've been racking my brain trying to figure out how to raise awareness for AI diseases.
I think I have it. Picture this... most AI disease sufferers look relatively OK on the outside but have really gross days of suffering on the inside forcing these seemingly healthy people to spend days upon days in their house in their pijamas trying to get their life back on track. Well, here's the plan.... a nation-wide pijama day. PJ's for AI's. Get people to go to work, school, play, dates, etc. in their pijamas. If you suffer or know someone who suffers from an AI disease, wear your PJ's in support. Then list all the AI diseases and guaranteed everyone will know someone. Guaranteed. Get businesses to challenge each other have PJ fashion shows. Can you see it? I don't know how to raise money for it with this but I think the awareness is most important now.

Just to give an idea of how our day might look like.

Part two. Have PJ day on Rare Disease day - end of February. Why? Because society hasn't put it together yet. When we look at the various diseases separately many of them fall under Rare Diseases - like Wegener's, however when you put them under the same umbrella (like has been done with cancer) Auto Immune diseases affect millions and millions of people. The find of a cure - or common thread - could have world wide implications. It would save billions of dollars world wide on chronic illness care as this is the number one drain on medical systems throughout the world and AI diseases are the number one cause for chronic illness.

How's that for a goal?

Wanna play? Wanna change the world? It hasn't been taken on yet, and well who better to take it on than a bunch of sick people?

This is gonna be SICK! ;)

It's a new day

There, I've had my rant last time, Hana is good, my brain is good, and I'm ready to take on the world. Jim P, you know what I mean... nudge nudge wink wink. Tell your wife I'm thinking about her and once financial freedom comes, we can take on the world and make Auto Immune diseases a thing of the past.

Here's to a new day full of hope and magic (yes and some work, but nothing good comes without that part)

Peace to you all.

What I hate most about all of this

I was up last night at 3am forcing myself not to turn on the computer and have a little swear-fest on my keyboard. What happened last night happened one time before where it affected me as viscerally as it did last night. If you're a mom, you'll get this completely. A dad would do I imagine, but I can't speak for men (nor for women for that matter, only for myself)... oh well, for myself it is.

Hana was sick last night. Violently sick. So sick that at one point I thought we're going to emerg - fast, but luckily that passed quickly enough to not give me a heart attack. What gets me, gets me so bad, is the fact that because I'm immune suppressed, I can't go and cuddle my little girl to make her feel safe and better. It kills me. Totally kills me. I have to sit on the edge of the bed and watch her and Brian lay in bed while she whimpers. It was way too much for me to handle. I went to bed after a while, but laid there angry with tears running down my checks and soaking the pillow. This is the only time(s)  where I get really pissed off at the situation.

I know. I know. I'm alive and still get to hang out with her all the other times. I get that, but I also want to be the comforting, caregiving mom that I feel I am inside, but I'm blocked by a wall of drugs and the threat of a horrible outcome if I let myself get sick with a simple flu. Ughhh!!!

Driving into the abyss

You know how when your car makes funny noises and you finally get it to the mechanic just so that it can work purr-fectly for him, and you feel like a fool-ass for wasting his time? Well, I'm going to drive through the worst snow storm so far this year to go see my doctor in Edmonton and I just got my bloodwork back and it looks awesome. I'm feeling stuff inside, but it is not at all reflected in my bloodwork. Brian said to me this morning "don't get upset if you see your ESR and CRP a bit high" - oddly enough this is one of those rare times I was actually hoping to see them a bit high but alas - on paper - I'm stRong like booll and smaRt like TRactor - (did you get my Eastern European accent from the way I wrote that down?). Anyways, I hope that we can have a solid discussion about next steps and nipping things in the proverbial bud with my super doc.

I've packed my car with all the emergency preparedness things you need when you drive through a big fat snow storm with all season tires - coffee, coffee, granola bars, blankets and everything else one needs to start a weinie roast, oh and some coffee (although I have to say that it's decaf - I've been off the 'juice' - caffeine - since two weeks before diagnosis - the withdrawl headaches were conveniently masked by the Wegener's headaches - see good things do come out of Wegener's.) Hopefully I wont need any of it, but being pred girl, the food wont go to waste. Nudge nudge wink wink.

See you on the flipside.

After thought: I just looked at all the road cameras on the highway and it looks quite nice throughout. Sunny and green. I almost thought I was looking at shots from the summer it looks so good. Oh well, at least I have munchies in the car now.

In my next life, I'm coming back as a super healthy weatherman.

Well. I'm taking my potshot at the weathermen back. I have no idea how the picture above could have possibly been taken at the time it said it was taken. I drove through that area not more than an hour later in a complete whiteout conditions with snow everywhere.  It was a harrowing drive, but I'm here now. In the biiiig city... ha ha.

Milkin' it......

This is a neat video on how it's OK to be sick...

It's long and I haven't got through the whole thing, but what I have seen seems to resonate.

http://www.youtube.com/watch?v=tfy69sa-h8E&feature=player_embedded#!

My doc just gave me goosebumps

Just got off the phone with Dr. Yacyshyn - my superhero doctor - and she managed to give me goosebumps. Why you ask. She's starting a Vasculitis Centre in Edmonton this coming January.... Wooooo hooooo.

I don't know how many of you out there watch 'House', but if you do you might notice that whenever things are really weird a diagnosis of Vasculitis is inevitable. Then comes the inevitable immunosupressants and steroids. I use to have my ears peeled for Wegener's but if you listen closely there's usually at least one mention of Vasculitis in each episode. Well now, for us Albertans there will be a Centre us strange but true patients will be able to go to in order to feel more normal and understood.

Yeeeehaaa Dr. Y. I thank you on behalf of all of creatures with inflamed blood vessels and messed up antibodies.

Do you or someone you know fit into this list? I bet the answer is YES

List of Autoimmune and Autoimmune-Related Diseases

Acute Disseminated Encephalomyelitis (ADEM)
Acute necrotizing hemorrhagic leukoencephalitis
Addison's disease
Agammaglobulinemia
Alopecia areata
Amyloidosis
Ankylosing spondylitis
Anti-GBM/Anti-TBM nephritis
Antiphospholipid syndrome (APS)
Autoimmune angioedema
Autoimmune aplastic anemia
Autoimmune dysautonomia
Autoimmune hepatitis
Autoimmune hyperlipidemia
Autoimmune immunodeficiency
Autoimmune inner ear disease (AIED)
Autoimmune myocarditis
Autoimmune pancreatitis
Autoimmune retinopathy
Autoimmune thrombocytopenic purpura (ATP)
Autoimmune thyroid disease
Autoimmune urticaria
Axonal & neuronal neuropathies
Balo disease
Behcet’s disease
Bullous pemphigoid
Cardiomyopathy
Castleman disease
Celiac disease
Chagas disease
Chronic fatigue syndrome**
Chronic inflammatory demyelinating polyneuropathy (CIDP)
Chronic recurrent multifocal ostomyelitis (CRMO)
Churg-Strauss syndrome
Cicatricial pemphigoid/benign mucosal pemphigoid
Crohn’s disease
Cogans syndrome
Cold agglutinin disease
Congenital heart block
Coxsackie myocarditis
CREST disease
Essential mixed cryoglobulinemia
Demyelinating neuropathies
Dermatitis herpetiformis
Dermatomyositis
Devic's disease (neuromyelitis optica)
Discoid lupus
Dressler’s syndrome
Endometriosis
Eosinophilic fasciitis
Erythema nodosum
Experimental allergic encephalomyelitis
Evans syndrome
Fibromyalgia**
Fibrosing alveolitis
Giant cell arteritis (temporal arteritis)
Glomerulonephritis
Goodpasture’s syndrome
Granulomatosis with Polyangiitis (GPA) see Wegener's
Graves' disease
Guillain-Barre syndrome
Hashimoto's encephalitis
Hashimoto’s thyroiditis
Hemolytic anemia
Henoch-Schonlein purpura
Herpes gestationis
Hypogammaglobulinemia
Idiopathic thrombocytopenic purpura (ITP)
IgA nephropathy
IgG4-related sclerosing disease
Immunoregulatory lipoproteins
Inclusion body myositis
Insulin-dependent diabetes (type1)
Interstitial cystitis
Juvenile arthritis
Juvenile diabetes
Kawasaki syndrome
Lambert-Eaton syndrome
Leukocytoclastic vasculitis
Lichen planus
Lichen sclerosus
Ligneous conjunctivitis
Linear IgA disease (LAD)
Lupus (SLE)
Lyme disease, chronic
Meniere’s disease
Microscopic polyangiitis
Mixed connective tissue disease (MCTD)
Mooren’s ulcer
Mucha-Habermann disease
Multiple sclerosis
Myasthenia gravis
Myositis
Narcolepsy
Neuromyelitis optica (Devic's)
Neutropenia
Ocular cicatricial pemphigoid
Optic neuritis
Palindromic rheumatism
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)
Paraneoplastic cerebellar degeneration
Paroxysmal nocturnal hemoglobinuria (PNH)
Parry Romberg syndrome
Parsonnage-Turner syndrome
Pars planitis (peripheral uveitis)
Pemphigus
Peripheral neuropathy
Perivenous encephalomyelitis
Pernicious anemia
POEMS syndrome
Polyarteritis nodosa
Type I, II, & III autoimmune polyglandular syndromes
Polymyalgia rheumatica
Polymyositis
Postmyocardial infarction syndrome
Postpericardiotomy syndrome
Progesterone dermatitis
Primary biliary cirrhosis
Primary sclerosing cholangitis
Psoriasis
Psoriatic arthritis
Idiopathic pulmonary fibrosis
Pyoderma gangrenosum
Pure red cell aplasia
Raynauds phenomenon
Reflex sympathetic dystrophy
Reiter’s syndrome
Relapsing polychondritis
Restless legs syndrome
Retroperitoneal fibrosis
Rheumatic fever
Rheumatoid arthritis
Sarcoidosis
Schmidt syndrome
Scleritis
Scleroderma
Sjogren's syndrome
Sperm & testicular autoimmunity
Stiff person syndrome
Subacute bacterial endocarditis (SBE)
Susac's syndrome
Sympathetic ophthalmia
Takayasu’s arteritis
Temporal arteritis/Giant cell arteritis
Thrombocytopenic purpura (TTP)
Tolosa-Hunt syndrome
Transverse myelitis
Ulcerative colitis
Undifferentiated connective tissue disease (UCTD)
Uveitis
Vasculitis
Vesiculobullous dermatosis
Vitiligo
Wegener’s granulomatosis (now termed Granulomatosis with Polyangiitis (GPA)
**NOTE Fibromyalgia and Chronic Fatigue are listed, not because they are autoimmune, but because many persons who suffer from them have associated autoimmune disease(s)

American Autoimmune Related Diseases Association
22100 Gratiot Avenue, Eastpointe, MI 48021-2227
www.aarda.org

Well that was something....

I want to start off by thanking you all for the wonderful messages and support. The response since the Global Health Matters piece has been mind-blowing. Thanks to the gang at Global (Christine, Su-Ling, and Paul) for making it happen and the opportunity to reach so many people in our area (and beyond) that are in need to connect with someone going through the same poopy roller-coaster ride. This experience has opened my mind up to the possibilities and the power of media to get people moving. I feel like this might have been an interesting and crucial first step to something bigger than all of us.

It's great to connect with other Weggies and to let the world take a peek inside the whirlwind existence of a Wegener's patient, however I have a feeling that this is all happening for a very defined reason... a reason that has been gelling in my head for several months now and the certainty and feeling I have in my gut gets stronger with each passing day. If you've been following my rantings on this blog, you've seen me mention this previously, but I feel such a primordial pull to go further with this that it's very hard to ignore or push aside.

Wegener's is small (doesn't feel like it when you're in the thick of it, but relative to the big picture it's small). How do you get anything of significance done for something that affects one in 30,000 - not very many interested stakeholders, other than sufferers, their families and friends, and the amazing but SMALL group of doctors who specialize in vasculitis. The problem is a bigger one. And within that problem lie unprecedented opportunities for discoveries that can be world changing. For real. The issue and the bigger problem is to find 'the common thread' to Auto Immune Diseases in general. AID (auto immune diseases) are huge... they affect a significant percentage of the population which means there are literally billions of people suffering in silence, feeling segregated from others because of the way that AID are themselves segregated from each other. There is an article I have linked to in an earlier post (Through the looking glass) which talks about how before the discovery of bacteria and how to treat it, infectious diseases were much like AI diseases are now. Because they affect different organs/systems they were treated by different doctors and not a lot of inter-communication. Just close your eyes and imagine the moment someone finds that 'common thread' for AI disease, what a life altering event that would be for millions and millions of people throughout the world. The cost of chronic health care would drop drastically as AI is the biggest cause of chronic disease.

I'm not a scientist, but I am a loud mouth schnook, and that's worth something. So there. This whole thing gives me goosebumps.... how about you?

Here's the goods

I'm being interviewed as I write

There are two really cool people standing behind me with a camera right now, and hopefully I managed to get out all the cool stuff about Wegener's that you all want to know. Check it out on Global tonight at 6pm. Yikes. Hope I do you proud. Have a good one fellow Weggies and friends.

Through the looking glass

It's interesting to read this stuff now... it's kinda like a fairy tale -  of sorts (Thank you Lewis Carroll)

Gotta catch that rabbit
No wonder you're late. Why, this watch is exactly two days slow. Mad Hatter

"I'm late, I'm late, for a very important date...."
It would be so nice if something made sense for a change. Alice


Let me see: four times five is twelve, and four times six is thirteen, and four times seven is -- oh dear! I shall never get to twenty at that rate!Alice

Yikes, a hole.... noooooooo....

"If everybody minded their own business, the world would go around a great deal faster than it does." The Duchess

Read the directions and directly you will be directed in the right direction. Doorknob

Going further into the Rabbit Hole...

"Speak English! I don't know the meaning of half those long words, and I don't believe you do either!" Eaglet

What is the use of repeating all that stuff, if you don't explain it as you go on? It's by far the most confusing thing I ever heard! The Mock Turtle

Falling deeper.....weeeeee
It was much pleasanter at home, when one wasn't always growing larger and smaller, and being ordered about by mice and rabbits.Alice


Now I'm with my people...
"I wonder if I've been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same, the next question is 'Who in the world am I?' Ah, that's the great puzzle!"Alice

Spreadin' the word

So I'm back at work and it's awesome. I love the energy of the people I work with despite the fact that I'm working from home. Still a little germ shy with all the insane drugs in my body. I've been feeling a little off lately but I'm hoping that it's germ related and not antibody related. I went for a blood test yesterday and will see what the results are today. If anything is strange I will call my super doc and see if another RTX is a wise step. What I'm really really really not interested in is letting something go too far so that I have to start the fight from scratch again. I'm on 9mg of pred and not even remotely interested in going up on that evil, life saving grossness.

Things are looking like I might end up on TV spreading the word of Wegener's. Nothing is final until it's final - an important lesson I've learned sportin' this disease (amongst a myriad of other lessons) but it's looking like it's a go thus far. If / when it happens I'll post a link of me looking like a fool.

Take care my friends and remember to only sweat the big stuff, the good stuff, the important stuff.... the little stuff is just that - little.

I owe, I owe, it's off to work I go....

Well, tomorrow is that day. The first day back at work since all of this started. I'm going back part time to start and working from home to ensure that cubicle land doesn't get the best of my compromised immune system, but I still feel a bit like a kid on the night before their first day back at school.

Don't know if you know that feeling... the one where you're feeling like your body is putting on a brave face and is all calm and cool on the outside but inside there is this twang, this subtle but overwhelming vibration that's making you question yourself.

I'm excited to be at that point in this ride where things are getting more and more like life before Wegener's, but as I said in an earlier post always a little afraid that I might jinx the whole thing and fall back into the vortex. That's one vortex I'm so not into falling back into. I look forward to seeing all the wonderful peeps I work-ed with and to see what kind of trouble I can stir up at work (that's my nature if you haven't noticed yet - wa ha ha ha).

It was a year ago now that I went and got my first flu shot (second H1N1 shot - which was combined with the regular flu shot) and ended up with a full on flare in the hospital getting pumped up with insane amounts of steroids. So I scoff at all the signs around town encouraging people to get a flu shot. Apparently they have the H1N1 in there again this season, and I'm not interested in another hospital visit and setback that takes a year to get a handle on. Just before going to Hawaii, my blood work was the BEST it's been since this all started. Everything on there was within normal range. Two weeks ago I went and all of my liver function tests were quite elevated again... total bummer. I went again today - two weeks early - to get another blood test and see if I'm trending or if it was just a blip. I'm hoping for the latter. Will know tomorrow. So tomorrow is a big day in more than one ways. Guess I should go to sleep now and get ready.

Nighty night y'all. Remember to enjoy all of the little wonderful things life has to offer. They truly are beautiful and make the things we worry about seem quite insignificant.

Peace.

Shit!

Jack's avatar on the forum was
 Leonard Cohen (one of his two fave
artists, the other being 'The Gorilaz')
I will never see Leonard the same again.

I am super bummed about the events of the last few days where yet another great person was taken from this planet by this ugly disease. "Jack sadly died on Friday 23rd September 2011 at 11.05pm UK time"  - we were informed by his loving family. He was diagnosed in 1988 and has gone through many years of intense drug therapy and ups and downs due to both the disease and the treatment.

Jack was an inspiration to everyone who went on the Wegener's Forum for advice, guidance and camaraderie amongst those in the battlefields of Wegener's Granulomatosis. His awesome sense of humour and compassionate ways made the worst of days better and most uncertain of situations bearable. He was quick, witty, economical with words (something I very much envy) and full of wisdom and unfortunately lots of experience with dealing with Wegener's and the medical profession.

This is something he wrote to me not that long ago. "Hope you continue to improve, you have certainly come a long way in the past year and although you will never be the same person, you might even be a better one!"

Love you Jack. Rest in Peace wherever you are and know that you will be alive in our hearts as long as we're here, and after that.... we'll see you on the other side and party without stupid Wegener attached.

Time's fun when you're having flies

I know I've been the absent Weggie, but there's a reason. The reason? Things have been looking up. I'm always so scared to say that so that I don't jinx it (as I'm so well aware now that things can turn on a dime) so instead of telling the world I'm feeling stronger I've just been trying to use that time to try and get closer to the old Marta. I miss her, and want her back in my life. On that note, I got a glimpse of her (not on the outside, but more on the inside) on our first REAL holiday as a family since this all started. We went off to Hawaii for a couple of weeks before I head back to work and since the Wegener's gig started and it's the first time I felt like a normal person in the last year and a half or more. It was great. Amazing. Not sure what part of the experience triggered that feeling, or maybe it was a combination of things, but it was amazing. I had a hard time coming home not because home is bad (home is paradise and I love where I live) but because I really didn't want to loose that feeling of 'normal'. I still get a little weepy at the loss of that liberating state of mind - liberated from Wegener's.

But onto new things now. Hana just started kindergarten and it's only her second day today but she seems to be liking it. There is a whole change of life around starting school which is new and slightly cumbersome but will become second hand in no time. One thing that is slightly perplexing to me is that I think with this disease came some very important lessons in life - whether the disease was brought to us to teach us those lessons or they came as an accompaniment to the disease is irrelevant but they were very focal and powerful when we were in the thick of it - and as things get closer to normal the lessons learned seem to be sliding off the plate like plastic plate full of raw chicken breast quickly getting taken out to the BBQ. This makes me sad. It's sad that we have to get a bitch slap to learn what's important in life and what the priorities are but once the sting from the slap goes away we start to forget, it also scares me that the universe will give another little bitch slap to remind us of the lessons and I'm really not up for another one at this point.

just sayin....

just sayin' not much, but thought I should post. Ma and pa are in Europe and it's hard getting in touch so I'm gonna use this forum to communicate with the rents.

Life's been gouda. I've been feeling stronger and all of the little aches and pains that were so reminiscent of the 'early days' have now left the building. It is because of them that I went to Dr. Y to see if she can put me on the maintenance drug sooner and seems to have done the deed. I did get a sore throat last week though and popped a few oregano pills and did the old 'grappa on a wool cloth on my throat' trick which eliminated the sore throat within two days. The bummer of it is that it has now silently moved on to my lungs. I will do the same routine but if it doesn't do the trick I have some antibiotics prescribed to me for just such a case. I had my doc prescribe me an antibiotic in case I got something while on the plane travelling to Hawaii next month (oh yeah, only 30 more sleeps until I hit the beach and am promptly thrown 'back' into the water by some well meaning environmentalists.) I have a feeling I will be going in for another prescription.

Wendy Hall, bless her soul, lent me her behind the bike trailer for Hana and we tried it out a few days ago and it ROCKS!!!! So today Hana and I went for our first real mountain bike ride together. It was absolutely fabulous. Absolutely! We rode. We talked. She's a smart kid. I so totally love that monkey. We hung out and just sat on a bridge and looked at the scenery. It was a magical afternoon, and I got to get some exercise and get one step closer to 'old Marta' (there are a lot of steps to go, but as with Wegener's, one little step at a time.)

I'm also going to do a little experiment this week. Hana is in Drama Camp (they let her in underage because of her natural aptitude for drama - ha ha ha ha - she looooves it even though she's a year and a half under age) and while she's in there this Wednesday, I will give selling elephant ears/ beaver tails (deep fried dough with icing sugar on it) a go at our local Farmer's Market. It might suck, or it might be great. I want to try it though so I'm never asking myself 'what if'.

Talking/preparing to go back to work in September (end of) after we get back from our holiday, so that's kind of ominous, but gotta do it. I'm looking forward to doing something productive with all of my old buds from the office. I will be working from home though just to avoid the cubicle land petry dish. I'm quite freaked out about getting sick again. "They" - docs and other smarty pants who know about this disease say that an infection of any kind can kick off a flare, something I am not in the least bit interested in, also I have a harder time fighting any bacterial infections and viral stuff takes a long time to get out of my system with my lack of 'fighter cells'. Oh well. I found I was the most productive in my life when I worked my home business before getting on with Parks, so we'll see. Maybe I'll start a trend.

Dancing in the streets

The 100 block street party is on tomorrow and I'm up looking for just the right ideas. I just downloaded some face painting ideas to add to the party feel, also some good Bulgarian eats are in order. Trying to get some pop up tents to make sure we don't get rained out, but it'll all be great. I'm stoked and quite looking forward to it. Yeah, another distraction.

'nuf bitchin'

I just noticed that the last couple of posts have been a wee bit on the negative side of things and this needs to be rectified this instant. From now on only good stuff (until something comes up that pisses me off ;)

My garden looks great. My treadmill sits there looking at me longingly. I have heard the faint siren call of the P90X discs (baby version of course) and I just read a post from a fellow Weghead who just pulled off a 60km road ride with a 1500ft elevation gain - maybe it's time to saddle up the old pony and check out Athabasca Falls - very very slowly. I'll report which one of those activities wins. I am without childcare and hubby is off to another bike race this weekend, so I think it might be one of the first two in the immediate future.

Peace out friends.

First holiday in swimwear - ughhh/ yeah / ughhh

Love being away from home. Not complaining about my life at home, but being in the same place day in and day out where the proverbial poo hit the proverbial fan, and where I've been trying to clean up said fan, gets a little tiring and somewhat depressing from time to time (rarely but it does happen to the best of us).

I was super stoked to get away and go on vacation, but (again I'm using the word 'but' - I don't like it when people are giving me that phraseology) but this environment of beach and sun and bathing suits is doing a number on my brain. Again, don't get me wrong, I'm super happy to be here and be on holidays, but I can't get away from the reality of what the drugs have done to me in the last year and some. I can't hide in my baggy clothes, and I've been quite stubborn about buying a bunch of new 'phat' (i.e. cool for big girl) clothes, so I'm feeling a little (lot) sausagee, so I caved in and bought a size 12 one piece bathing suit with a little skirty thing to hide all the nastiness. A lot of reflective surfaces here too. Yay (a very sarcastic yay). My new chemo hair is quite lovely too - I'm shocked Holywood hasn't picked up the look yet.

Speaking of hair, I had a great haircut by a dude here in Penticton about six years ago, so I tried to find him. Went to his old place, but it's been sold, and they knew of him, but not his name or where he works. They thought maybe in Summerland. So I called every hairdresser in Summerland to find him and alas, I did. However he is booked until Saturday and can't fit me in. We're leaving Friday. He said he'd call me if he had a cancellation but I'm loosing hope with each passing day. His name is James and his place is called James on Kelly.... if you're ever in the area. I think I might be out of luck though. Probably for the best as I was kinda looking for a miracle, and those are hard to come by these days.

I was just telling Brian that this might sound vain, but all my whining and complaining comes from a different place than vanity. I've been me, the me I know inside and have known for the first 43 years of my life, and this new version (one I don't particularly like to see) is quite shocking to see and be reminded of...it lives on the outside and is the one everyone outside my body sees, and I honestly am surprised every time I see a reflection of myself and see a complete stranger looking back. I'm sure other people feel this way when life throws them a curve and their 'shell' changes, but I think because it happened so quickly might be why it's freaking me out like it is. Everytime I meet someone I want to tell them that the person they are talking to is not the person I think they are talking to, but it's pointless and absurd and my own private little battle.

Oh how things can change

So before all of this started I considered myself one of the healthier people on the planet - statistically speaking. Now I'm uninsurable. Aint that great? We are booking a holiday to the States in September - one last hurrah before going back to work. I haven't really had a significant getaway from this experience, and I am so looking forward to not being  here where it's all happening and being somewhere with palm trees. So now I have to fill out all of these forms to get insurance, and once they're filled out I get told in a not very nice way that not only will they not insure me for any hospital stay related to my current condition (which I would have gladly paid more for, and am certain wont happen anyways because it takes a while for the shit to kick in) but they wont insure me for baggage or trip cancellation or interruption or in case I get hit by a car or have a completely unrelated accident. Uggghhhh! That was one of those little things that set me off. It really bummed me out because for a couple of days there it seemed like it would put a kaibosh on the whole family vacation plan. It also gave me a little face slap about where I now stand in society. That sucks!

And when I feel that way I always go back to being mad about being betrayed by our government health care system for pushing us all to get that stupid H1N1 shot. The people who are supposed to keep us safe and healthy transformed me from being a very healthy, strong, fit woman and mom to a burden on our healthcare system, uninsurable, round, pudgy, balding Wegener's patient.

There is a group trying to get Canada on board with the other G8 countires for compensating people harmed by vaccines. The premise is that there will always be people who will get adverse reactions from vaccines but we all do it for the greater good of the all so they should be compensated. Russia and Canada are the only ones who are still in the dark ages. Here's the working paper: http://www.munkschool.utoronto.ca/assets/files/Publications/keelan_workingpaper_feb2011.pdf

Also some other research to support my theory on the cause of my disease...

The adjuvant? Squalene.
According to Meryl Nass, M.D., an authority on the anthrax vaccine,

“A novel feature of the two H1N1 vaccines being developed by companies Novartis and GlaxoSmithKline is the addition of squalene-containing adjuvants to boost immunogenicity and dramatically reduce the amount of viral antigen needed. This translates to much faster production of desired vaccine quantities.”[v]

Novartis’s proprietary squalene adjuvant for their H1N1 vaccine is MF59. Glaxo’s is ASO3. MF59 has yet to be approved by the FDA for use in any U.S. vaccine, despite its history of use in other countries.

Per Dr. Nass, there are only three vaccines in existence using an approved squalene adjuvant. None of the three are approved for use in the U.S.
What Squalene Does to Rats

Oil-based vaccination adjuvants like squalene have been proved to generate concentrated, unremitting immune responses over long periods of time.[vi]

A 2000 study published in the American Journal of Pathology demonstrated a single injection of the adjuvant squalene into rats triggered “chronic, immune-mediated joint-specific inflammation,” also known as rheumatoid arthritis.[vii]

The researchers concluded the study raised questions about the role of adjuvants in chronic inflammatory diseases.

What Squalene Does to Humans

Your immune system recognizes squalene as an oil molecule native to your body. It is found throughout your nervous system and brain. In fact, you can consume squalene in olive oil and not only will your immune system recognize it, you will also reap the benefits of its antioxidant properties.

The difference between “good” and “bad” squalene is the route by which it enters your body. Injection is an abnormal route of entry which incites your immune system to attack all the squalene in your body, not just the vaccine adjuvant.

Your immune system will attempt to destroy the molecule wherever it finds it, including in places where it occurs naturally, and where it is vital to the health of your nervous system.[viii]

Gulf War veterans with Gulf War Syndrome (GWS) received anthrax vaccines which contained squalene.[ix] MF59 (the Novartis squalene adjuvant) was an unapproved ingredient in experimental anthrax vaccines and has since been linked to the devastating autoimmune diseases suffered by countless Gulf War vets.[x]

The Department of Defense made every attempt to deny that squalene was indeed an added contaminant in the anthrax vaccine administered to Persian Gulf war military personnel – deployed and non-deployed – as well as participants in the more recent Anthrax Vaccine Immunization Program (AVIP).

However, the FDA discovered the presence of squalene in certain lots of AVIP product. A test was developed to detect anti-squalene antibodies in GWS patients, and a clear link was established between the contaminated product and all the GWS sufferers who had been injected with the vaccine containing squalene.

A study conducted at Tulane Medical School and published in the February 2000 issue of Experimental Molecular Pathology included these stunning statistics:

“ … the substantial majority (95%) of overtly ill deployed GWS patients had antibodies to squalene. All (100%) GWS patients immunized for service in Desert Shield/Desert Storm who did not deploy, but had the same signs and symptoms as those who did deploy, had antibodies to squalene.

In contrast, none (0%) of the deployed Persian Gulf veterans not showing signs and symptoms of GWS have antibodies to squalene. Neither patients with idiopathic autoimmune disease nor healthy controls had detectable serum antibodies to squalene. The majority of symptomatic GWS patients had serum antibodies to squalene.”[xi]

According to Dr. Viera Scheibner, Ph.D., a former principle research scientist for the government of Australia:

“… this adjuvant [squalene] contributed to the cascade of reactions called “Gulf War Syndrome,” documented in the soldiers involved in the Gulf War.

The symptoms they developed included arthritis, fibromyalgia, lymphadenopathy, rashes, photosensitive rashes, malar rashes, chronic fatigue, chronic headaches, abnormal body hair loss, non-healing skin lesions, aphthous ulcers, dizziness, weakness, memory loss, seizures, mood changes, neuropsychiatric problems, anti-thyroid effects, anaemia, elevated ESR (erythrocyte sedimentation rate), systemic lupus erythematosus, multiple sclerosis, ALS (amyotrophic lateral sclerosis), Raynaud’s phenomenon, Sjorgren’s syndrome, chronic diarrhoea, night sweats and low-grade fevers.”[xii]

Hiya

Just spent a week in the city getting to see my super doc, Dr. Yacyshyn, and planning the next phase of attack. So unless I'm one of the unlucky ones who doesn't posses the enzyme to metabolize imuran, that will be my new companion for a long time to come. I'm interested in trying out a drug free remission, but we'll take that in baby steps as we do everything else with this goofy disease. Dr. Y isn't into it (the drug free thing) but I'll try and convince her again once things are stabilized and all looks good. Are you reading this Dr. Y?

Also went and saw my ENT and got tubes put in again so my hearing is not perfect but man has it increased exponentially. I have to say that he (my ENT) has totally redeemed himself after the initial experience. He is kind, and gives me the time to explain myself, and is almost a different person (I know he must have been frustrated seeing me every few days after he put in the tubes the first time when things kept deteriorating and nobody had an answer - but it was a yuckier time for me when nobody took me seriously and I was in the worst shape in my life). He is very good now though, we've had a couple of good discussions in the last few visits. I also have to say that Tyra, his assistant is the best medical assistant I have seen in my newly very active doctor visiting life. She is not only nice and kind but also very compassionate and professional and totally on the ball. If everyone in the medical field was like her, people would have a completely different view of going to see the doctor.

Brian's got a week off and the forecast is for rain rain rain... but he managed to sneak off today and get a good ride in - it's broken cloud right now so he's going for a long one before he goes to the GranFondo in Penticton next month. While there I get to see the hairdresser that makes miracles happen out of bad hair, and now I have the worst hair ever - in the history of time, so hopefully he can pull off a miracle. Hopefully he's still working.

Last but not least, the survey results might actually get used for something useful instead of just settling my own curiosity. Dr. C Pagnoux and Dr. E Yacyshyn are putting the results together and will try and get them published in a medical/rheumatology journal. COOL! wait... SUPER COOL!!!

Just thinking about old friends and new ones

Just found out that there are more people than my immediate family reading this blog lately, so I wanted to send out props to all my old friends and all my new friends. Anna, Mike, hope you're doing well, haven't heard from you in a while, Cole and Georgia, hiya, welcome to the vortex - ha ha. Geoff, thanks for the email, I'll respond when I get back on my actual computer - I'm glad things are going well, and I'll be thinking about you when you're getting infused full of the good stuff. I loved the power point - awesome way of looking at life, and all the snowy pictures got me all excited. I loooove the snow. Brian's ruined me for life with the snow thing - ha ha. I love sun too, but now in my new 'beached whale' body, I'm more into the winter games.

I hope you're all doing well and things are moving in the right direction for all of you. Someone just told me something today that kinda stuck. "If things are bad remember that they can always get worse." So no matter how bad things are dance in your head, tap your toes, and smile knowing that you're alive and have an opportunity to beat this thing and get back some semblance of normalcy - I will anyway.

In the jaws of life



Inside the largest dinosaur in Canada
(it's always good to be safe and wear a helmet :))

 Hi friends and family. Sorry for the time away. I went with Hana and mom and dad to Dinosaur land for a few days away from the everyday stuff. It was rainy the ENTIRE time we were there, but it still was fun. Saw the Tyrell Museum of Paleontology and Hana totally dug all the dino stuff everywhere in the town. We even found a dino bone - I think it's a femoral head of a smaller creature (it looks just a bit bigger than a human femoral head - this is Physical Anthropology Marta speaking). We got to go up in the biggest dinosaur in Canada and look out of it's mouth at the surrounding geology. Pretty cool place.

I also had a cold that I've been dealing with since the beginning of the month, but just before we took off to Drumheller it went into my chest and aside from a little anxiety on my part it seems to have gone by without any collateral damage. I did go to the doc however and got some antibiotics to ensure it doesn't turn into a lung infection.... can't handle one of those right now. The funny thing is that the antibiotic I got has an interaction warning for people on prednisone - the combo can make your tendons and ligaments rupture. Sweeet! So I've been taking it real easy to ensure no ruptures. I did have my eardrum rupture while we were away though, and that was kinda cool. Not really. But the good thing is my doc looked at the ear that ruptured and said it looks better behind my eardrum now than it has in months and months. I can barely hear out of that ear, but she figures it's because the eardrum is healing and is a little stiff so not functioning the way it's supposed to. This too shall pass. I'm excited that summer is coming - or so the calendar says - Brian said it was snowing today all the way down to the lower chalet. Crazy weather. I'm spending some time in my garden and went for my first bike ride since the flare - that felt good... real good... just to be out there and using my own strength to propel fast enough to feel a little wind in my face. Oh the little things that you forget to appreciate when things are going well. I will strive to continue to do that every day - appreciate the little things.

Live long and prosper my friends.

A crazy week of appreciation

It's a year ago today that I was getting my lungs cut open by Dr. Bedard and his team who came in on their day off to figure out what's going down in my body. It's a year ago today I got my diagnosis. What a journey of growth (on many levels - ha ha) it has been this past year. Brian and I went out the other night (on the 6th - a year to the day of getting into emerg and being told I have a very nasty cancer in my lungs) to celebrate another year of life and getting to spend it with the people you love.

What have I learned in the last year?

Family is the MOST important thing in the world. The people you love and chose to spend the rest of your life with in front of all your friends. The people that have come to this world out of that love. The people who bore you out of their love. The people who you grew up with and fought with as a kid and discovered the world with as a sibling. The people who have accepted you into their lives because of the love you have for their son/brother. I love my family more than any words could ever express. Thank you so much for being my rock - all of you.

Friends are invaluable. People who you work with every day that take time out of their busy lives to show you love, support and give you courage. People you play with, and drink with and eat with and wouldn't think they would have the time to think about you, and they end up surprising you and filling your heart with joy and love.

Don't judge. You never know what the person you're choked with for taking their time crossing the road is going through at this moment. You don't know why that big person riding one of those little automated chairs is that big and in that chair. You don't know that the girl with the snarly face at the checkout is that way because the doctors have put her on some crazy meds. You just don't know. We all have our own crosses to bear and our own demons to fight. I have learned this last year to give people a break and be gentle with them (except when I'm having a pred rage moment - then I can't help myself, I try, but not always successful). What's on the outside is not always congruent with what's on the inside.

Take every moment of feeling good and being happy and cherish it because you never know what tomorrow holds. Treat it as the miracle it truly is. Live every moment like the next might be taken away (cuz it can be) with dignity, grace, loyalty, love and joy (I am not saying I've got this one nailed, but I try).

Don't stress out about tomorrow because I really have no clue what tomorrow holds. It's as much as a mystery as what lies on the other side of the universe, so I have stopped worrying about what can happen and if it will. There are billions of things that can happen tomorrow or next year, but I know what's happening NOW, so I will react accordingly.

Question authority. Not always but don't just take authority's word because they're in a position of authority. Those positions are held by people like you and me who have good days and bad days, who skipped some classes in school and don't know everything about everything. Inform yourself as much as you can and be an active participant in the big decisions that guide your life in a certain direction. Authority, for the most part, appreciate that.

There, I've  pontificated enough. Now to going out and enjoying my beautiful family. Happy Mother's day mommas. A big fat hug and kiss to my momma, thanks for being there for me during the super crazy times a year ago, there are some memories that are fuzzy, but one thing that is crystal clear is looking up between being in and out and always seeing your face looking down on me - full of love and compassion. I love you mommy.

Time's fun when you're having flies

Well it's almost a year from the real crazy times. It was a year ago today that I was in the Emergency Department of Hinton Hospital. Tomorrow would have been the drive to Edmonton to see the ENT for the last time before diagnosis, and three days from now was the night that I was told I have terminal-ish cancer of the lungs. Then things started to get better. These days were the real shitty ones.

Now - today - I feel good... real good (well ). Had the RTX just under a month ago, and what a difference. I just bought a treadmill and it came in last week. I've been walking on it to try and get some of the conditioning that I've lost over the last year. I look like a fertility doll - which I have never found pretty.

I've cut my hair short - up to the new growth - and all of my new hair is curly.... hmmmm, all of that money I spent as a teenager on perms, just popping some little pills for 10 months coulda accomplished the same effect. Ha!

The ski season is over, and it's time for new beginnings. Time to get the old Marta back on track. Time to publish a book. Time to plan a big event for next spring's Rare Disease Day (stay tuned).... also there might be some history making news from our Weggie Survey, who knows what tomorrow brings, I do know that today is a beautiful day with my beautiful people.

FDA OK's RTX for WG

Feel like you're watching an army flick with all those acronyms. Well that's what happens when you're immersed in the world of Wegener's Granulomatosis. You become acquainted with all sorts of goofy words you'd never have even considered looking up before...

The good news.... FDA has just aproved Rituximab (RTX) for the treatment of Wegener's Granulomatosis. This is great news as this powerful yet expensive drug has been one of only two 'big guns' used to get Wegener's under control when in a flare or at initial diagnosis. The other big gun is Cyclophosphamide / Cytoxin (CTX) which is a chemo drug that causes all sorts of other damage to the body. I've been on CTX for 10 months - EVERY DAY - and it sucks. It's kept me alive, but it still sucks. On that note, I finally decided to cut my hair. I lost, hmmm, I'd say about 70-75% of my hair but still had good distribution of the survivors and was holding on tight to the dream that it still looks OK. Meanwhile I was getting new growth underneath that was looking quite goofy. Soooo, I just cut all my hair to the length of the new growth and lo and behold, my new hair is CURLY.

So now I have a chunky pred face, neck, and back and short and curlies on top. Not a pretty picture to imagine, but ironically I feel much more human since the hair purging. Brian is still trying to get used to it, but all in good time.

I think I dodged the bullet

I think I might have had a little pred rant last time.

Hana ended up going through the cold/flu thing while she's with her grandparents and I think I might have dodged it. Pheeee-uuuf.

I'm noticing a considerable improvement in my sinuses in that I don't have to wake up 15 times a night to blow my nose and unstuff my breathing passages. Yeah! Headaches are also subsiding. I get the occasional 'zap' but I know how to deal with those now. There is no pressure or pain behind my eyes. My skin is not doing the 'Johny technicolor' show it use to, and my face feels floppier when I touch it - it doesn't feel like an overinflated balloon that might pop at any moment. On that note, love your wrinkles.... you have no idea how great they are until you loose them... I'm so looking forward to having my old wrinkles back. My hair is a circus show, but I am starting to get some new undergrowth (about an inch and a half) and my fifteen strands of long hair fighting for supremacy are keeping the peach fuzz underfoot slightly in control.

Now to the job of getting strong again. I have lost pretty much all of my conditioning (other than the basic minimal requirement to stay upright) so it's time to get it back.

Old Marta, here I come.

RTX ROX

So it's been just over a month since my first Rituximab infusion and things are looking brighter. I had a bit of a dip but it seems to be clearing itself up. One little downside is that after just one day back at Nursery School, Hana got some bug and now I think I might have gotten it from  her as well. That kinda bugs me. I know that those environments are little petry dishes, but it's so blatantly obvious that it makes me a little angry. I had been keeping her from school the week before the second infusion as I couldn't get anything or the whole thing would be a waste, a $10,000 waste as well as my chance at getting healthier. Then there were two weeks of holidays for Spring Break. We've managed to stay healthy for a long time while the world around is sniffling... then off she goes to school on Monday and is sick by Wednesday. I just started coughing this morning but I believe now that I have no B cells, my immune response is slower. Hopefully this blows over soon and healing continues.

Woo hoo Rituximab!

The Valley I didn't think about

I am now in a valley... which is normally a good thing when you're out on a back country hike, but in this situation it's a little unnerving. I didn't think about this before the infusion and am getting a good taste of reality, but I also know that this is the final umpapa before things start improving.

What's my valley? Well, cyclophosphamide stops working about a week after you stop taking it. I think it stays in your system a little longer, but I definitely know from experience that there is a week on either side of starting or stopping cyclo where you feel a definite difference in symptoms.

I just saw my doc on Friday and asked how long before the Rituximab kicks in and she said four to six weeks and for some people two to three months (I wont be one of those however). Sooooo, there is a few week period where symptoms will probably come back - I'm starting to feel the headaches and the shooters making an entrance.

I also asked about why some people are getting an RTX infusion every six to eight months and if I had misunderstood our goal. She reassured me that I had not misunderstood and in my case we will not re-infuse unless I have another flare. I am not interested in needlessly taking drugs and being B-cell depleted for the rest of my life. What I am looking for is a normal life with a drug free remission as the pillar holding that together - for a looong time.

I thought of something the other night. I have always been a strong believer that change is great. I have always loved change. I wonder if I got an 'in your face' from the universe.... but I still have to say that I love change. It keeps things fresh, even if it is with a stinky disease like Wegener's. There are so many people I would never have met and things I would not have done had I not been introduced to Wegeners's. So in YOUR face, 'in your face'.

Biological Weapon of Mass Destruction

Wa - ha ha ha ha..... I have set off a serious BWMD on some poor, unsuspecting, misguided B-lymphocytes. There will be another attack in 18 days to kill off the ones we missed and then a new/old life hopefully.

The event was quite uneventful - thank goodness. The nurses were awesome. There are a lot of people who are in there too often. It was quite the infusion dance hall. I got to see lots of people coming in and leaving as my infusion is one of the longer ones. I was there from 8:20am to 3:20pm. One dude came in (a regular) and slept for about 6 hours while getting his infusion. Apparently he works nights and schedules his infusions in the middle of his workweek so that he can get a good sleep before hand. They give him some Benydryl and off he goes to slumberland. It was an interesting vibe - way different from the ER vibe where everyone around is in a slight panic and unsure of the events to come. Here it was all relaxed and everyone that came in was at peace with their lot and what has to be done. The lady beside me said to me... regardless of the poking and prodding, it sure is worth it in the long run. The nurses are happy, relaxed, peaceful, as are the patients.

I felt a little tired after the event last night, and a little off today (tired wise) but other than that nothing out of the ordinary. I've been having dreams of running races, and through the forest, and doing all sorts of things from my old life that I haven't done in a very long time... so hopefully, like little Hana says, "your night dreams will come true".

Two more sleeps

Yup, it's fast approaching. I'm a little nervous but mostly excited. I was comparing it to buying an all-inclusive vacation. When you buy way ahead of time, you start to develop expectations because you're over thinking it, whereas if you buy it the day before you leave (like Brian and I have on a few occasions) you have no expectations, and everything is a treat. Landing in the hospital and having things done to you is more like buying the vacation the day before, you just take it as it comes. Now I feel like I bought my vacation in advance cuz I'm thinking about it way too much.

Of course Murphy had to come into the picture too. I've been keeping myself so safe from catching anything as they wont do the infusion if there is any sign of infection, virus, fever - anything. I haven't caught anything really that I know of since I got on the immunesuppresants in May, and last Friday night I started to feel off, and within a few hours my body was doing a full evacuation of it's innards from both ends. As I was holding on the 'puke bucket' all I could think of was - 'lovely, only five days before I have to go in'. Luckily it was a short lived body assault, and has now passed. All three of us had it too, so hopefully we're done with that game.

My next post will be after the wonder drug infusion.

Viva la vida, as my good friend Janet just sent me.

P.S. HAPPY INTERNATIONAL WOMAN'S DAY!

Rituximab here I come

March 10, 2011. Part one of two for Rituximab. March 28, 2011, part two.
Then, remission time.

In the meantime, here is some video of my little bunny skiing it up with momma duck (me) behind her just a couple of days ago...
http://www.youtube.com/user/TheJasperlife?feature=mhum#p/a/u/0/XId_dillfek

I love my family. Wait, I think I've mentioned that a few times before.

International Rare Disease Day Today - Feb 28

Today is a special day for special people. I always thought I was special but now I have even more reason to think so. So join in and click away. Next year maybe we'll have a big party on this day, all of you are invited - Weggies Unite... wa ha ha ha.

what makes my soul soar?

....my soul soars when I see my little girl learning new things and getting excited about life and what it has to offer. My soul soars at the thought of watching my little girl achieve her goals as life unfolds for her. My soul soars as I see the sparkle in her eyes and her daddy's eyes each and every day. My soul soars when I hear those three little words from her and her daddy, for no apparent reason.... and to you both, I love you too.

Another snowy day in paradise

It's another beautiful day in paradise. I looove the snow. It makes everything look and feel so fresh and new, and this feeling of newness is more precious now than it has ever been in the past.

I've gone for a couple of skis in the last week. I can only pull of a couple of runs at a go, but man does it ever make me feel good. It really gives me that sense of 'normal' that I so yearn for. I forget about my cheeks, and my achy body, and my perma-headache, and my owy ears and stuffed up nose.... all I focus on is making those perfect little turns and staying upright and feeling the wind in my gigantic face. I'm also a huge fan of muscle memory, because despite huge deconditioning over the last year, I can still pull it off and feel like I know what I'm doing. Oh and Hana took a lesson yesterday (after skiing with us with a leash since last winter) and she can officially ski on her own, no leash, turning perfect little turns and stopping. I was watching her yesterday and bubbling over with momma pride. She's quite a little thing. I love that little thing. Still can't believe she came out of my gut.

I go for a CT scan on the 15th and see what's really going on in the vast empty caverns known as my head. Hopefully not too far behind that is the rtx infusion and then remission. Ahhh, that magical word - 'remission' . There is a lot of virus action going on in town and I have to keep myself from getting sick as that will keep me from getting the treatment. I have a snotty, coughy four year old who loves to cuddle (as do I) so there's a lot of hand washing and sanitizing going on. Gotta be ready for the big treatment at the drop of a hat.

Here here to fresh and new!

LDN - Low Dose Naltrexon

So I just finished reading the book "Google LDN!"  Very interesting indeed.

I have had a serious misconception shattered (I didn't even know that I misunderstood auto-immune diseases like I did) and have learned some interesting things along the way. I will share in a nutshell what I've learned from the book.

1. I thought auto immune diseases meant that the immune system is overactive. I was in fact wrong. It means that the immune system is deficient and has a hard time distinguishing between self from non-self (which I knew), but it is not over-active like I had assumed all this time.

2. Although there is no known immune system regulator, research is showing more and more that perhaps the regulator of the immune system is the body's endorphins.

3. People with auto-immune disorders and other neurological diseases as well as some cancers and HIV/AIDS tend to have 25% or more decrease of endorphins in the blood.

4. This drug, at low doses,  inhibits endorphin production during the essential hours of the night using a low dose, short term spike which in turn forces the body to create two to three times more endorphins for the following day. The increase in endorphins helps to regulate the immune system into functioning properly.

5. The drug was FDA approved for recovering drug addicts at 50mg per day, but due to unpleasant side effects at that dose doctors stopped prescribing it. It has lost it's patent with time and is now a generic drug, so there is no point in drug companies to do millions dollars worth of research for other diseases as they stand to not make any money from the findings. Nobody markets it and nobody really makes any significant money from it.

6. Because doctors are afraid of litigation they are hesitant to prescribe 'off label' meds, which would be the case in our situation. But it's perfectly legal and ethical and has the potential to eliminate a lot of pain and suffering - as we have seen with rituximab.

7. The drug is very inexpensive ($30 or so a month - quite different from our cocktail) and has literally no side effects. It said that 1 out of 50 patients might experience sleep disturbances the first week, but that inevitably goes away after a week, and besides we're all use to that with pred. It also increases the endorphins, so you're feeling pretty good to boot. There also seems to be no contradictions with our drugs, but I will double check with my doc and the pharmacist.
It is recommended that people who have had organ transplants and are on immunosupressants as well as people taking any drugs with opiates should not take this (opiate users should stop taking the drugs for two weeks before starting LDN, and organ transplant patients can offset the effects of the immunosurpressants in accepting the new organs - so that might be dangerous)

8. If you do get a prescription here are a couple of things to ask for.... make sure to ask that they don't prescribe the 'slow release' version, as it is not effective in treating what we need treated. Also because they need to have a filler in the capsules for the low dosages (so a compounding pharmacy will need to put it together), ask that they don't use calcium as a filler as it blocks absorption. The other options are lactose or sucrose as fillers as they don't mess with the absorption.

The book I read is called 'Google LDN!' by Joseph Wouk. Book is so so, but the appendix is great. The subject matter is quite noteworthy.

How's that for blah blah blah. I'm going to look into it further in the next couple of weeks. If it can't hurt and can make you feel better and might be able to help with the disease, why not???

http://www.ldners.org/resources.htm
http://www.lowdosenaltrexone.org/

Wow - check this out if you're WG curious

Leah, a fellow Weggie, just posted this on Facebook, and I've been totally into it for the last 20 minutes. It's quite cool - both the slide show and the animation on what happens inside the blood vessels of a Weggie. I'll also put this link on the links section for easy access later.

http://www.ANCAVasculitis.com/index.php

Almost time to go home

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

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

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

Open Comments

Hey y'all,

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

Thanks for following, and stay in touch.

Yipeeeeee!!!!

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

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

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

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

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

off to the big city

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

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

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

Truly Blessed

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

I'll keep getting stronger

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

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

"The Spoon Theory" of being sick

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

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

Happy New Year

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

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

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

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