Xolair

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I’m coming up on a year since my Drug Induced Christmas Miracle…C R A Z Y! What a difference a year makes. I feel really grateful right now. Grateful for Xolair and how this year has panned out healthwise.

There is a picture I have of a games night with the girls a year ago. I look at it and feel a rush of emotion…I remember EXACTLY how I felt that night. Exactly.

I felt terrible. I wanted to cancel because my breathing was brutal and I really had zero energy to even sit upright, let alone host a whack of rowdy wine-drinking women ๐Ÿ˜‰ I was so exhausted and just so done…mentally and physically done. I was glued to my inhaler that entire night and couldn’t wait for it to end so I could just wheeze openly, lay down and try to get it in check.

Since Xolair, it has been a year of discovery. I think I celebrated for a number of months because my allergies weren’t nearly as sensitive. So I ate bread (supposed to stay away from yeast), ice cream (supposed to stay away from cow’s milk), pounded back the cupcakes, and drank wine. I ate chips, dip, chocolate bars. Four months ago, I decided it was time to shut down the party.

Not only was I packing on the pounds, but my asthma was noticeable once again. To be honest, I was genuinely scared that the effects of Xolair were short lived and the party was over for me. I knew I had to stop pissing around and look after myself because if my asthma was coming back in full force I had better be in good enough shape to offset it. I started eating healthy…cut out all processed foods, refined sugar, dairy and grains. Paleo virgin in full force. It took me a couple attempts, but once I researched and understood that the very foods I had sensitivities to, where those not included in the paleo lifestyle. It made sense for me. Inflammation needed to come down. Paleo makes sense for me for a couple other reasons too, but that’s a later post ๐Ÿ˜‰

The thing about all the crap being out of my diet is it’s really easy to determine what my body can’t handle. For me, that is always in the form of inflammation and trouble breathing. First discovery was that the kombucha I was sooooo loving (and brewing my own!) was making me wheezy. So…gone. Then I noticed days when I really threw back the eggs, my asthma flared up. Eggs are also a source of inflammation. I’ve cut back on them huge (only have in my baking for a snack) and already my asthma is in check again.

So yes! Xolair is a life-saver and total game changer for me…but as with everything, there is never a simple pill or easy route to health. I still need to really stay focused or I will slip back into that girl in the picture that even looking at makes me so sad.

No. frickin. way.

 

My Christmas Drug-Induced Miracle

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I’m writing this for anyone else who has asthma and thinks maybe they have to settle for strained breathing every single day. And how it can gradually take over a big chunk of your life.

I got asthma when I was 16…always coughing, drinking cough medicine like a mad woman because we thought it was a cold that wouldn’t go away. And snorting Dristan like some sort of junkie.

Until I had my kid it was always VERY manageable. I’d go to ER maybe once a year, but the rest of the time no problems, meds always worked, it never affected my life whatsoever.

The past 2+ years have sucked healthwise. I’ve been tested for everything under the sun. I switched doctors, cried, and got seriously pissy with them, because NOTHING they were doing was helping. Beyond frustrating. $350 to get the air tested in our house. Nope. Every type of inhaler. Nope. Yoga. Nope. Oils. Nope. Allergy tests. Nope. Biopsies. Nope. Natural medicines. Nope. Work out like crazy, build your lung capacity. Nope. Eat 14 cupcakes a day. Nope. (ok…I made that one up…but it didn’t work either)

About 8 months ago, my Lung Specialist (who I have a mad crush on now) suggested Xolair. An injection at a mere $25,000/year.

Um…no. We’re self employed with no benefits. So just no.

Last month I went to see him and was worse again. My husband said enough. Do the shots, if after a few months nothing, we quit, but at least you’ll know.

So…..Monday last week I went for my Xolair application appointment. Cindy was awesome. AWESOME.

NEVER in my 23 years of asthma doctors has anyone REALLY REALLY explained the disease to me. Because it is that, it IS a disease.

With asthma, you look fine, no visible ailments but you can really feel like hell. It can make you stop participating in certain things because you are worried you’ll have to quit because you can’t breathe and you feel like a puss because of it. I’ve kind of always considered it a minor thing that I needed an inhaler for, and I always kind of felt it was my fault it was getting worse. Cindy was very direct with me. You have a disease. Stress didn’t do this, stress can’t create these numbers, it’s a disease and we need to aggressively treat it because it is getting worse.

Ya…I cried. Like any unstable mother would do, filled out the Blue Cross applications, and cried.

And Cindy…awesome, caring, smart Cindy said “You know what? I’m going to give you a compassion shot right now, no charge”.

And then I cried more because, well that’s a $650 please stop crying moment worthy of some tears of gratitude ๐Ÿ™‚

She told me not to expect overnight success like I know some have had.

First 2 nights I had my attacks early evening…usually they are late at night which is why I never get to sleep until morning, after I’m pooped from fighting to get my breathing in check. And…I slept! I slept hard…lol…I felt like I haven’t slept in 2 years, which I kind of haven’t had a deep, uninterrupted sleep in that long. And I’ve slept every night since. AND I’m 5 days with no asthma symptoms. FIVE DAYS! I haven’t had a stretch like that in a looong time ๐Ÿ˜€

Freakin miracle…I can’t even tell you.

If your health is going to shit, it really is up to you to keep at it, search out specialists, research, research, research, try everything. Eventually something has to click. And don’t quit until it does. Keep asking questions. It’s up to you to get better.

I was told this drug can change your life. The first week has me feeling rested, relieved, and I could not be more grateful.

Sometimes my weirdness turns out pretty awesome

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So..this past weekend a family stayed with us we’ve never met. By never met…I mean in person – I’d talked with her a LOT and seen pictures of her family growing up over the past 8 years. EIGHT YEARS! Amy and I met 8 years ago when a group of us blogged on MSN Spaces. Since then…after Spaces retired, we’ve kept up with one another through facebook.

She’d posted she was planning holidays to Drumheller and West Ed, I saw it and immediately demanded STAY WITH US! Her and her 3 kids did! What a FANTASTIC weekend! We played games, went to the Royal Tyrrell Museum, Centrefest, had a campfire and caught some belly dancing at It’s All Greek to Me.

Every night my husband would ask…”Seriously, no surprises? She’s what you thought?” Nope, no surprises. No awkward moments. No OMG WHY ARE THESE PEOPLE IN MY HOUSE! It was like having an old friend here to catch up with. The ONLY thing I was surprised by was her voice, because I’d never heard it before. She said mine was bang on to what she expected. I guess she just knew I’d have a high pitched whiney voice ๐Ÿ˜‰

So…REAL relationships CAN be built online, just sayin ๐Ÿ˜‰

Thanks for coming Amy, we had a great time with your family!

Ronald McDonald House

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I’m not going to lie, this past year I’ve feltย inundatedย with charitable donation requests, events and fundraisers. It’s tough, you want to support them all; the ones that are marketed in such a way that it’s fun to participate, the ones that affect your friends and family, and the international programs that tug at your heartstrings, and of course the ones that involve a sweet wide eyed kid on your doorstep.

You can’t possibly do it all, so you choose what feels right.

The Ronald McDonald House feels right for me. When Larry Mathieson started tweeting about its construction probably a year ago I felt excited. I’ve had friends who have used these facilities in other cities and thought wow, this is so awesome for Red Deer. No, this is HUGE for Red Deer. Not only that, but Larry struck me as an honest, sincere, caring man that I trusted. (relationships built on twitter people, i can’t say enough!)

So when Angie asked me if I wanted to join her in taking the Orientation so that we can go in to the House and prepare meals for families there I was IN. What a great way to help. In my world food is comfort (yes I know Trainers, but it is!) and if we can provide home cooked meals to these families that are under insane stress and give them even a tiny bit of comfort in their day, count me in.

Can’t wait to get started!!

Listen. Acknowledge. Save the Crazytown

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I used to work for Fluor during the Joffre 2000 Projects. There I met a man who taught me more than any person I’ve ever met. I don’t think he knows that.

The job was in Labour Relations. He was the manager and he hired me as his assistant. He was SMART. And not annoying smart (you know the type) but socially smart. Always friendly, always REALLY listened – stopped what he was doing and focussed on what you were saying, and always genuine in his responses. Always. But not a pushover. If you were an ass, he’d make you aware of it. But not in a passive aggressive way, in a direct concise way. No bullshit, no beating around the bush.

We’d have a job steward come in, sit for an hour to get to see him, only to put in a complaint that there was no lemon pie in the Camp Kitchen. OMG. My first EMOTIONAL response was always “Are you frickin kidding me? Get your ass out there and get to work and be grateful you get pie at all you lazy ass”… or something like that ๐Ÿ˜‰

Not my boss, he would listen. He would understand that these men were away from their families for considerable lengths of time. They missed their kids, they missed being cared for by their spouses. He acknowledged their complaints. Which is all they really wanted. Someone to listen and acknowledge them. He never was quick to the emotional off-the-top response…he always took time to consider where they were coming from. Amazing talent. Needless to say, I’m crazy jealous of that talent and whenever I find myself going crazytown over something that REALLY isn’t that big of a deal, I try to remind myself of his awesomeness.

Stay calm. Breath. Listen. React. And if someone’s an ass, tell them straight up ๐Ÿ™‚

Thank you Mark McCullough for the impact you’ve had on my world.

 

Goat’s Stomach

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My dad had surgery for a hernia when I was probably 4 or 5 years old. It left a HUGE scar on his belly. He always told us kids that he had to have part of his stomach removed and they replaced it with a goat’s stomach. He was dead serious and stuck to his story for year. YEARS.

My dad is the original no BS. He tells it like it is and never beats around the bush or lies. Teases, yes. Lies, no. So I believed him. Of course!

Fast forward…college years…drinking with a group of friends and I share that my dad has part goat’s stomach. They laugh at me. A LOT. huh. I’m pissed they don’t believe me. Call my dad. I’m 19 years old and I’m calling my dad to prove that he has a goat’s stomach to all my drunk friends.

My dad doesn’t have a goat’s stomach.

This blog is for any of you out there that believe everything your parents tell you. Parents lie. I’m going to go tell my son right now that I have a lizard in my ear and every time he doesn’t listen to me it eats another chunk of my brain. Take that.