Atopic Girl's Weekend Off!

Being an "atopic" girl doesn't mean that I just think about allergies and atopy all day long. Honestly, I don't think about it all that much. Labour Day weekend was a great example of how I integrate the fact that I have allergies and atopy and love travelling, eating, shopping and having a great time in general. Nothing in that sentence excludes anything else. This is a bit of a longer post, but I hope it gives you an idea of how anyone with allergies or atopy can live pretty normally.

FRIDAY
I arrived in Toronto to meet my younger sister. The plan, have a manicure, have lunch with my sister and then go find her a dress for a glitzy Indian wedding on Saturday!

At Holt's Salon and Spa, located at the flagship Holt Renfrew store on Bloor Street, I happily sat back and enjoyed my hand massage and Express Manicure. I've been there and know that none of the products contain my allergens. It's always good to check, especially if you have a new aesthetician.

A bit later, my sister and I met up at Fresh on Bloor, near Spadina. This is my favourite Fresh in Toronto. Even though I've been there about a hundred times by now, I still let them know about my allergies (leaving out eggs and shellfish, because they don't have them on site). I emphasized my allergy to cashews, since they use them in a couple of dishes, but made sure they knew that almonds are okay. As always, I had an allergy-free and really delicious meal - cornbread with hummus, Ninja rice bowl and a matcha green tea latte with almond milk to go. I was ridiculously full for hours.*

All RentFrockRepeat!

Fresh was followed by RentFrockRepeat on Golden Avenue, just off of Dundas Street West. It's about a 20 minute streetcar ride from St. Patrick Station. The premise of RFR is brilliant. Rent a designer dress for a totally reasonable price. If you live in or are visiting the GTA, you can go in and try on the dress. If not, the site has detailed measurements and you can even ask for a second size (for free) in case the first one doesn't fit. They ship the dress out to you and you ship it back. Have two events to attend during the same time period? Rent a second dress for $35. And, if you refer a friend, you get a credit towards a future dress rental. I know! Brilliant! I actually visited RentFrockRepeat a few weeks earlier to try on a stunning David Meister dress for the wedding in question. Happily, it went up for sale and I bought it. My sister decided to try it out and we spent an hour and half in RFR amongst too many stunning dresses. Everyone there is amazing and friendly. I couldn't have spent a better afternoon. We were super lucky and met the CEO and Co-Founder, Lisa Delorme. Yes, she's that stunning in person.

That evening included mobile phones that weren't turned on and GO buses to suburbia. Thankfully, it also included a great martini from the bar in the lovely Fairmont Royal York and an easy, allergy-friendly meal from Spring Rolls in the Bramalea City Centre in Brampton. I love allergy-friendly chains and Spring Rolls is definitely one of them.

Unfortunately, I'd forgotten to inform the hotel that we needed down-free bedding. While the hotel had somehow run out of synthetic fibre pillows, I found that some of the pillows in our room were synthetic and we ended up all right. Definite note for next time though.

SATURDAY
Breakfast was included and provided by the hotel, but I planned ahead and brought an allergy-friendly, travel-friendly protein powder (Genuine Health Vegan Proteins) which I could easily mix with orange juice. Thank goodness since they didn't even have fruit!

If you've been following my blog or Twitter feed, you may know that I was expected to sing at a wedding. While I have a Grade 8 in Voice from the Royal Conservatory, I got it quite a while ago. So, even with my two months of vocal lessons, I was nervous. I practiced in the shower that morning and thankfully my voice wasn't hoarse and my asthma was under control. I will admit that I started off a bit shakily when I started singing in front of a packed church, but I bucked up and asthma-smasthma - I sang my heart out.

Between the wedding and the reception, we need to grab a very late lunch. I headed to another allergy-friendly chain, Moxie's, also at the Bramalea City Centre. The menu here changes so sometimes I have a lot of choices and sometimes not a lot. This time, I chose the Citrus Chicken to go and when the manager came out to speak with me, she let me know that the dish was totally free of all my allergens! I felt like I'd won a prize! It was delicious and I happily wolfed it down at the hotel.

The picture looks odd as it's sideways

The reception was held at the Pearson Convention Centre. I called them months in advance to let them know about my allergies. The chefs are made aware of the allergies ahead of time and then on the day, guests are provided with colour-coded cards. I had a red card which listed all my allergies. The salad and pasta were safe, they just omitted the cheese on the latter. And the meal itself, beef, chicken and veggies, were easy and delicious without the sauce. Dessert was a martini glass of fresh fruit.

SUNDAY
The top off to a great weekend was brunch at Frank at the AGO. I've been here a few times for drinks and appetizers, but never a meal. To celebrate my mother's birthday, the entire family got together (from as far flung as Peru and Ottawa) and had the best brunch I've ever had. When I made the reservation, I let them know about my allergies and was told that it wasn't a problem. Before we arrived, the server and the chef had a discussion about what would work. I had to reiterate my egg allergy, but once that was done, I found I had quite a few choices on the menu. I ended up with a beavertail bacon sandwich with apple butter which is even better than it sounds.

That was my weekend. Pretty spectacular. I didn't let my eczema, asthma or food allergies get in my way. I stuck to my regimen - washed my face, used moisturizer, used save shaving tips, and always double-checked food ingredients. That's the way to live an atopic life!

* I went back to Fresh (on Bloor) on Tuesday and had a Miso Burger (a fave), a glass of organic wine and took a Sweets From the Earth cupcake to go. You can never get bored at Fresh.

Why You Should Eat Foods Your Allergic Child Can't

An Atopic Girl's Perspective on "Disordered Eating"

This post was inspired by reading yet another amazing post by the Allergist Mom: "My Disordered Eating". One of the questions asked is do you avoid eating food your child is allergic to? Part of the answer is related to guilt, since what person wouldn't feel guilty about eating something that someone they care about can't? Another part of the answer is related to contamination and introducing the allergen into the home, but I'm not going to address that since it varies so much. I'm simply writing from the perspective of someone who watches others eat foods I can't on a regular basis.

In the post, there is a picture of the Allergist Mom eating a deviled egg and enjoying it. I love this picture. I think it's so important that parents and siblings are not restricted, as much possible, regarding what they eat.

One of the most important lessons an allergic child, youth or adult has to learn is the difference between fairness and equality. The world is not a particularly fair place for anyone nor is it necessarily equal. However, when it comes to food, equality is the goal. Having an equal experience doesn't mean that the person gets to have the same food as everyone else. It does mean that they partake in the experience equally - a birthday party, an anniversary or a dinner out. They're not left staring at an empty plate while everyone else is enjoying a meal.

Another reason is the basic fact that if you're not allergic, you shouldn't stop eating a food. Especially if you enjoy it. Especially when you're out of the house, that is your opportunity to enjoy yourself. Any parent of an allergic child lives with a constant degree of stress and guilt. If an ice cream cone or a slice of pizza brings you a bit of happiness, it's silly to deny it.

So, if it's not physically harmful, I think it's important for children and youth to see that their parents and siblings eat different foods. It was difficult for me as a child, but as I got older, the fact is that I got used to it. Most importantly, I love the food I can eat; so, I rarely look at anyone else's and wish It were mine. In fact, people usually look at my meal and wish it was theirs.

Quick note: I will now be posting weekly. Look for new posts every Monday on AtopicGirl's Guide to Living and the TalkHealth blog. As always, if you have something you'd like me to talk about - something you want to know - let me know.

Allergies, Atopy and Health Care Reform: Why You Should Care

I've written about why public relations matters for atopic and allergic people. This post will deal with why allergic and atopic people need to get involved with government relations, specifically health care policy. While this post is about the future of health care policy in Canada, I think some of the core messages certainly apply elsewhere. That said, Canada clearly has a lot to learn from many other Western nations who handle health care a lot better than we do.

A few weeks ago, I attended a political convention in Toronto. I will "out" myself as a member of the Liberal party at this point. Now that it's out there, you can put whatever spin you wish to on anything I write here, but I am writing this with my unbiased hat on. Liberals have certainly not done anything to advance health care recently and are not in a position to do so at present.

At the Liberal Convention, I had a great opportunity to hear talks by the Honourable Dr. Hedy Fry, M.P. for Vancouver Centre and Liberal Health Critic, and Senator Art Eggleton from Toronto and Deputy Chair of the Committee of Social Affairs, Science and Technology. The latter committee just released an extensive report on the 2004 Health Accord which expires in 2014 - "Time for Transformative Change: A Review of the 2004 Health Accord". If you're not familiar with the jurisdiction involved, very basically health care is administered by provinces, but the money is transferred from the federal government to each province. Some of the exceptions are health care for Inuit, First Nations and Aboriginal peoples as well as veterans and military personnel. Health care for those groups are administered and funded by the federal government.

Recently, I also attended a talk by Globe and Mail columnist and reporter, André Picard entitled "The Path to Health Care Reform: Policy and Politics" organized by the Conference Board of Canada. This was another amazing talk about the future of health care in Canada.

Both Fry and Picard pointed out that the current system of Medicare was created in a different time (the 1950s) and designed to fulfil a much different purpose than it does currently. Medicare was for acute cases and hospitals were for "birth, surgery and death" according to Picard.
  
The medical system is much broader now. There are numerous chronic conditions like asthma, eczema and allergies that require life-long monitoring, treatment and medications. However, the system we currently have was never meant to deal with these kinds of issues. On the most basic level, diagnosis and treatment is still very fragmented. I currently see an immunologist and family doctor. In the past I have seen a dermatologist, pulmonologist and psychiatrist. In the future, chances are good that I will need an ophthalmologist. All of these conditions are related to atopic and allergic conditions, but they're all dealt with in a vacuum. This isn't the same in all countries. In other countries, there are hospital departments which deal with most of these conditions in a much more holistic way, but I have never experienced the same thing in Canada. What makes it even more difficult for people with multiple chronic conditions is the lack of e-records, something discussed by both Fry and Picard. I keep a spreadsheet with the basics of my medical information (treatments, medications, etc.) and print it out when needed, but this needs to be done on a national scale so it can be easily accessed by all relevant doctors and contain thorough data.

What really struck me about Picard's talk is that he addressed the ideological barriers that exist in Canada surrounding Medicare. To critique health care is to risk a politician's career because the concept of universal health care is so entrenched in Canadian pride and identity. We think it distinguishes us, makes us better than everyone else, when really there are a lot of countries who administer universal health care better than we do. Picard called our view of health care "myth"-based, when it should be fact-based. It should be a rational discussion of how to improve a half-century old institution.

I won't go much further into his discussion, because I think it's worth hearing from him. I will include the Globe and Mail article and the video and audio to his actual talk below.

Regarding Dr. Fry's talk, she outlined four areas that need to be addressed:

1. Pharmaceutical strategy

2. Health Human resources

3. E-health

4. Delivery of care

Every point in there is important for those of us with atopic and allergic conditions. The amount of medications I use in a year adds up to a staggering financial amount. I feel I am an otherwise healthy person, but the fact is that I need medications to maintain my health. An important part of Medicare should be financial assistance for medications, yet it's not something we have unless one is hospitalized or meets very narrow criteria.

There is also a shortage of certain specialists and too many dermatologists and family physicians who spend more time selling cosmetic procedures instead of dealing with their medical patients in a timely fashion. Something in there has to change. There should be no reason to wait six to eight months for an appointment. There are immunologists and dermatologists who have figured out the perfect balance and that needs to be looked at.

E-health is a simple concept, but is proving difficult to implement for many reasons, some valid and some not. However, for people who will deal with lifelong conditions, it's necessary. Canada is also the second largest country in the world in terms of land. It is not feasible for every population in Canada to have access to each kind of specialist it needs; however, telehealth (something being done very well by organizations like the Ontario Telemedicine Network) is cost-efficient and practical. Technology and services like this need to be rolled out across the country so that every remote community has access to the best care possible.

Delivery of care deals with multidisciplinary, holistic teams and more of a focus on home care. This is something that is pretty difficult to disagree with. However, it's not happening on the scale it needs to. Considering the fact that seniors form a larger proportion of Canadians than ever before, it's past time to act.

So, what does all of this mean? It means that the health care system we are all proud of needs fundamental restructuring. It means that as people with chronic conditions or as the parents of those with chronic conditions, we need to start pushing our M.P.s and provincial representatives to change now. Health care is something that deserves and requires federal leadership and whatever your political leanings, that's the exact opposite of what the current government wants.

I am always amazed at the amount of backlash when some meaningless person out there makes a disparaging or intolerant remark about kids with peanut allergies. Clearly we have power, but we don't always use it in the most productive way. Regular, motivated parents are responsible for ground-breaking legislation like Sabrina's Law. This is the next step to that kind of legislation. It's about making sure plans are in place to help people with atopic and allergic conditions throughout the rest of their lives.

At some point, your allergic child with asthma or eczema is going to be my age. They're going to be dealing with the health care system all by themselves and wouldn't it be amazing if they didn't have to spend a lot of their income on medications just so they could live a regular life? Wouldn't it be amazing if they didn't spend hours of their time on visits to doctors? Wouldn't you feel better if they had an anaphylactic or asthmatic reaction and the hospital had access to all of their medications and medical history? Shouldn't it be a Canadian right to live in any province and have access to the same level and type of health care services?

That's what this is all about. So, let's get this started. 

Links You Should Read: 

The Path to Health Care Reform: Policy and Politics (VIDEO)- André Picard (CPAC) 

The Path to Health Care Reform: Policy and Politics (AUDIO)- André Picard (Conference Board of Canada) 
Dragging medicare into the 21st century - André Picard (Globe and Mail) 
Time for Transformative Change in Health Care - Senate Report (Committee of Social Affairs, Science and Technology) 
Federal-provincial health accord expires in 2014, experts say it's time feds talk about their plans - Bea Vongdouangchanh (The Hill Times Online)

Links to Get Started:

Government of Canada - Members of Parliament

Alberta - Members of the Legislative Assembly

British Columbia -  Members of the Legislative Assembly

Manitoba - Members of the Legislative Assembly

Newfoundland and Labrador -  Members of the House of Assembly

New Brunswick - Members of the Legislative Assembly

Northwest Territories - Members of the Legislative Assembly

Nova Scotia - Members of the Legislative Assembly

Nunavut - Members of the Legislative Assembly

Ontario - Members of Provincial Parliament

Prince Edward Island -Members of the Legislative Assembly

Quebec - Members of the National Assembly

Saskatchewan - Members of the National Assembly

Yukon - Members of the National Assembly

Lessons to Learn from Anaphylaxis Deaths

Every time I hear about another death from food allergies, I am horrified, sad and take it as another reminder to be vigilant. I just read an article about Diallo Robbins-Brinson who passed away in Atlanta this past Monday. My intent here is not to be critical. My intent is to point out what must be learned from this.

Allergies are not a fixed thing. Personally, my food allergies developed over almost a decade and within that time, some came and went a few times. Even now, in my 30s, I have some that may have disappeared and I'm careful to eat a variety of foods and never become dependant on one thing should I develop another allergy. I also know a handful of people who developed allergies in their 20s and they had no history of allergies, personal or familial. If you are allergic to anything, you unfortunately must assume that you can develop other allergies.

The other point is that in the article, it stated that according to his mother, Robbins-Brinson was "so accustomed to avoiding peanuts, Diallo no longer carried an Epi-Pen". It's pretty obvious why this horrifies me. Sorry to use that word twice, but that's what it is - horror. I am very accustomed to avoiding eggs, dairy, certain nuts and shellfish, but under no circumstances would I not carry two EpiPens with me. If I didn't have my EpiPen (I always have my EpiPen), I wouldn't eat.

Complacency and comfort are things allergic people can never afford to be. Not ever. We can never get accustomed to being safe. We're just not. We can live our lives normally and be positive and optimistic (and we should be), but no matter what, we have to be critical and be prepared for the worst.

Once again, I am not criticizing the family at all. This was an undiagnosed allergy and I can certainly understand why Robbins-Brinson did everything the way he did. I've written before about how I can feel "too safe" when I'm staying with friends and family.

What I am saying is that parents and caregivers should have frank discussions with their child's/teen's immunologist and their child/teen. For adults, being older doesn't mean you're wiser and it certainly doesn't mean you can stop an anaphylactic attack. If any doctors are reading this, you need to be a lot more frank with your patients. A little bit of fear is not a bad thing if it makes someone carry an EpiPen or wear a MedicAlert bracelet. I'll admit that a horror story about a freshman who was force-fed eggs during university initiation and suffered severe anaphylaxis was what it took for me to become so vigilant about my own health years ago.

I would love to see an awareness campaign about always carrying epinephrine auto-injectors developed by a social profit allergy organization and funded by the makers of epinephrine auto-injectors. It worked for seatbealts.

So, please learn the lessons here. Allergies change and under no circumstances should anyone with allergies or asthma be without an epinephrine auto-injector or medical bracelet. It's just not worth it.