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