Making tough decisions…

So last week I had to make a tough decision. I had intended to drive to Sudbury on Friday morning to attend Northern Constellations. This is a 2 day conference for faculty and staff who work at the Northern Ontario School of Medicine (NOSM).

I have two stipendiary positions with NOSM. The first of which I have held for a number of years now which is as a committee member of the Theme 2 Committee which ensures that professionalism is integrated throughout the NOSM curriculum and education. This committee usually meets in person during the conference whereas we use video conference to facilitate our meetings for the rest of the year.

My second appointment is new this year as the Family Medicine Research Tutor for Sault Ste Marie.

So as NOSM faculty I was really looking forward to the event and meeting my colleagues in person. However, the closer the event came the more my anxiety increased. Finally, after not feeling well for a couple of days I checked my blood pressure and found it to be very high. So I started to consider not going.

Unfortunately I was then booked to stay in a different hotel to the one that the conference was in. So this meant that I’d have two hotels to manage my allergies in. Two lots of open areas and two bars and restaurants. That was the final straw. With much regret I cancelled my attendance in person and set up to join the Theme 2 meeting by video conference instead.

Within a couple of days my blood pressure dropped back down to normal and the general sense of illness went away. So I knew it was the right decision.

However, it was a really tough decision to make. Not so much missing the specific event but rather having to accept the restriction on my life. However, given that my citrus allergy appears to still be extremely sensitive it was the safe decision.

Will I ever be able to stay in a hotel again? Maybe. But I need to break it down into smaller pieces rather than trying to attempt a full conference. Perhaps a night in a local hotel using room service rather than eating in the restaurant and checking that they don’t provide a breakfast buffet, with fresh oranges, in their lobby area.

It might be possible. Maybe by next year’s conference, which will be in Thunder Bay, I’ll feel that the risk is out weighed by the benefits. Though having to fly up there adds another environment to manage.

Some days are tougher than others. Some decisions are extremely tough to make but all I can do is the best that I can and look out for my own safety. It would be a lot easier if all my health issues would just get in line rather than my having to work them all out together!

Chronic pain… bring on the warmer weather please!

For the past few weeks our weather can’t seem to decide which season it is. Just as we thought spring was really here we got more snow again. Thankfully, it didn’t hit us as hard here in Sault Ste. Marie, Ontario as it did in other parts of Canada.

Regardless, for those of us who suffer chronic pain it was a bitter setback. Many people with chronic pain are adversely impacted by the cold and damp. So having had a few days of warn sunshine our bodies were starting to feel a little less painful. Just a touch, but enough to really relish it.

Today the sun is shining, and the sky is blue. The temperature is 5C and a light jacket or heavy sweater is all that’s necessary. (Even if Kevin is wearing the heavy winter jacket he bought here in Canada, back home in Australia where it’s the same temperature but Winter for them!)

Unfortunately the warmer weather doesn’t completely take away the chronic pain, it just alleviates it. It maybe gives us an extra spoon or two to work with. So please remember to be understanding of your friends and family members who suffer with it.

They would love to wake up one morning and no longer be in pain. As that’s extremely unlikely to happen we carry on the best that we can. But oh so thankful that the warmer weather may finally be here to stay for a while!

To seasonal camp or travel…

So, as some of you may remember, I bought a new little travel trailer back in September 2018. I say new, but it was made in 1972. So it’s just a year younger than I am. However, it’s in great shape and I had it completely re-wired, last year, before it went into storage for the winter.

Now that the new season is almost upon us (it starts the May long weekend) I have a decision to make. In the past I’ve always travelled with my trailer. I took my previous Boler to Prince Edward Island through Canada and to Rhode Island through the USA on different trips.

Last year I camped with my new trailer in Sturgeon Falls for the long weekend after buying it in North Bay. I like camping and I like travelling so it seems like I just need to decide where to travel to this summer.

So that was my original plan. I booked a shake-down camp in St Ignace the week following the long weekend in May and started planning a much longer trip to meet friends at their seasonal site in Alberta. But then I saw a posting by the Busy Beaver Campground on St Joseph’s Island just 45 minutes away. They have a few seasonal sites available. So yesterday I went out to see them for myself.

Two of the three sites wouldn’t work for me. One was very exposed and my fibreglass trailer would just become an oven without any shade. It had a great view of the water though! The second was tucked in between two other larger trailers. It had shade and a great view but I have two dogs and one of the big trailers had little children. I could see me spending my whole summer trying to get them to leave the dogs alone. It would also have been very difficult to enjoy if I didn’t get on with the owners of the two big trailers as I’d have to walk between their sites to get anywhere.

That brings me to the third. Which is tucked into the trees so it gets plenty of shade. It doesn’t have a perfect view but it’s not bad either and it’s less than a minute’s walk to get a better view. So I’m debating what to do…

Fortunately, Steve & Lorraine (owners and managers of the Busy Beaver Campground) don’t know for sure yet that the third site is available so I have some time to think. Do I want to try a year of seasonal camping in the same place?

On one level it appeals a great deal. Much as I love travelling it is a hassle to make and break camp every day or two. I love the idea of being able to leave clothes, things to do and some food there week to week.

It could be nice to be next to the same group of campers all summer. Though that could be bad too if we don’t get along! But I’m not too concerned with that as I can usually get along with most people and the campsite is strict about campers being quiet at night-time.

Not having a bathroom in my trailer the bathrooms on site were important to see and they are great. Newly renovated and exceptionally clean. They’re also accessed with a key so only campers on site can use them.

The good news is that the campsite doesn’t have WIFI. The bad news is that the campsite doesn’t have WIFI. Thankfully, I did have cell coverage by the office at least. I forgot to check at the actual campsites. So I wouldn’t be out of touch completely.

Given that I plan to spend most of my summer conducting a systematic review which entails a great deal of reading this could work out perfectly. Little distractions and plenty of time to work on my research. I just have to remember to make sure that I have copies of papers on my laptop itself and not just on my G drive.

So, assuming the site that I want is available I have to decide do I want to seasonal camp?

The maths is pretty simple. It works out that I need to spend 7-9 nights a month at the campsite to simply break even on what the cost of nightly camps would have been. If I am there more than that I gain.

Additionally, if I want to stay for next year I can store my trailer on the site and not have to move it. That appeals too and would save the storage fee that I’m currently paying.

Given my disabilities a seasonal site may be the safer option for me as well.

So it all comes down to the fact that I have to decide if I’m ready to have my wings clipped or not.

I’ll let you know what I decide…

Invisible disabilities… Thank you Sault Ste. Marie…

I saw a new doctor this morning and as part of their intake I had to provide a list of my medical conditions. I started listing them but the nurse and I got stuck spelling the first of them, Osteogenesis Imperfecta, so I pulled up my medical ID on my phone. 18 conditions later they then made the ‘mistake’ of asking about my allergies. 13 allergies, including several anaphylaxis, later we were done. Thankfully, I’d actually thought to take a list of my current medications with me so I simply gave them the list rather than listing all 14.

As you can imagine going through that little lot gave me pause to think. Not one of my conditions is visible or readily apparent. My use of a service dog does mean that I’m disabled but other than that clue you would never know that I was invisibly disabled, let alone the extent of it.

Being a member of several service dog groups on Facebook I’m aware of a number of handlers that have access issues because ‘they don’t look disabled’ or ‘they’re too young to be disabled’. I guess at 47 that I don’t fit that last one anymore. However, I certainly fit the first.

Despite this, I’ve never had an access issue. Once, when staying in a hotel in the USA I was asked the two questions allowed by the ADA. But otherwise I’ve never even been asked for the doctor’s letter that I must carry with me in Ontario.

So I just wanted to thank the people in my town of Sault Ste Marie. Thank you for treating me as I wish to be treated. That is, just like everybody else.

Despite my long list of invisible disabilities people treat me as me, even with a service dog. Thank you!

Fake disabilities… Fake service dogs…

I’ve written before about the issue of certification for service dogs in Canada and how discriminatory some provinces are for service dogs and their handlers. However, there is a growing problem across Canada in terms of people faking disabilities in order to take their pet dog out in public.

Actually I doubt that they realise that that’s what they’re doing. However, if you take a pet dog out in public and call it a service dog when you’re not disabled to a point that a service dog mitigates your disability then you are faking a disability.

To have a service dog in Ontario a medical professional must have written you a letter, that you must carry with you, that states that you need a service dog to mitigate your disability. Without that letter a dog, no matter how well behaved, is a fake service dog.

Why is this such an issue? Well it takes about 2 years to fully train a service dog and training continues throughout its working life. Service dogs are trained to cope with a huge variety of situations and scenarios. Throughout all they are required to be calm, quiet and do their job.

Pet dogs are not trained to the levels that a service dog is. Even extremely well trained dogs, such as a police dog, is not expected to behave as calmly as a service dog is.

So when you bring your pet dog out in public and come across a legitimate service dog team the majority of pet dogs will misbehave. They’ll bark, lunge, try to ‘say hello’ to the service dog and in some cases even attack the service dog. I know of several teams whose service dogs have been attacked and the dog had to be retired from service work as a consequence. Leaving that handler isolated and bereft.

Additionally, people take their pet dogs out in public and they are way beyond their comfort level so they misbehave. That puts the next service dog team at risk of being refused public access due to the first dogs behaviour. It’s not right and shouldn’t happen, but it does.

Emotional Support Animals (ESAs) are an American concept and is needed to allow pets in non pet friendly housing. They do not exist in Canada, aside from in Calgary by-laws for livestock! With that exception either your dog is a full service dog or it’s not.

If it’s not then please realise that when you take your pet dog out in public and call it a service dog that you are really faking a disability.

To be totally honest having a service dog is hard work. It’s not something many people would choose unless they’ve tried everything else first. It’s like having a permanent toddler. Everywhere I go I have to think about my dog’s safety and what tools, such as boots or ear protection, I might need.

Additionally, I have to be ready to deal with the people who try and interact with my dog when it’s working despite a clearly labelled vest which asks people to ignore the dog. I also have to be ready to listen to everybody’s dead dog story. I have no idea why service dog handlers are expected to listen to such stories but I’m not alone in coming across this. Even if people leave us alone they still point and stare. Working a service dog is not for the faint at heart. A 10 minute trip to the store can become 30-45 minutes easily just dealing with other people.

So let me reiterate: Please stop taking out pet dogs and calling them service dogs. You are discriminating against the disabled in doing so and making the life of legitimate service dogs teams much harder. Please just stop!

Dead canaries…

In the days of heavy coal mining canaries were taken down the pit as early indicators of gas leaks. To put it simply, if there was a leak such as carbon monoxide the canaries would die before the miners giving them a warning and time to get out of the pits immediately.

Sometimes I think that we should now have a modern version of canaries in all public places. Not to detect carbon monoxide but rather the clouds of perfume and cologne that some people drench themselves with.

Our sense of smell is much like our other senses. It acclimates to the smells that are regularly around us so that it can concentrate on smelling things that are of danger to us and out of the ordinary.

Unfortunately, this means that for some people they can no longer smell their favourite perfumes/colognes and so they add more and more until they can smell it again. By which point it’s so intense that those of us with sensitivity to smells have real problems.

Sometimes you can talk to those concerned and they’ll agree to back off the scent a little. Most health related buildings are no scent or low scent areas but not everybody follows the mandate.

So I think we need a modern version of a canary in public spaces. Something that would set off an alert if somebody entered the space with excessive scents. I think that a few embarrassing moments like that and the perpetrators may think a little more before using so much scent again.

In reality this isn’t going to happen but perhaps we can just raise awareness that scents can kill people. As an example, I’m allergic to Marijuana so 420 friendly spaces are literally deadly for me.

So please, as you reach for that perfume or cologne think twice about where you will be going that day and think twice about how much you put on. Those of us with scent sensitivities will thank you.

Why I can no longer fly…

A couple of articles in the past week really hit home for me. Since developing RADS I have severely cut back the amount of travel that I do. In the past I have travelled all over the world and perhaps acted somewhat naively about my safety.

I’ve had one really bad experience on a plane where I reacted to an orange being eaten somewhere on the plane but was able to stabilize myself with medication. Thankfully, much of my travel has been international and as citrus fruits are on the list of prohibited foods for import in most cases I’ve been relatively safe. Additionally, airlines rarely give out fresh fruit.

However, my sensitivity is now much higher than it was. Unfortunately I found out yesterday that, at least to oranges, it remains extremely high. I was in a meeting and as it was breaking up a trolley of food & beverages was brought in for a meeting following ours. There was an orange on the trolley. A colleague notified me immediately and I left straight away thinking that I’d avoided a reaction. The orange was not peeled after all. However, on my way back to my car I suffered from some restricted breathing and had an asthma attack. So apparently, even an unpeeled orange is now an issue for me.

What I am interested to know is how long they were waiting outside the door before coming in. Kai, my service dog, started to be unsettled about 10 minutes before the end of the meeting. I put it down to being a long day as he’d been working since 9am and it was now 4pm. I wonder now if he was trying to tell me about the orange.

Anyway, to cut a long story short I don’t feel that it is safe for me to fly anymore as my allergy is so sensitive and airborne. I sit in wonder when I see people like Miss Allergic Reactor talk about how she travels the world extensively with a severe nut allergy.

In contrast, just this week two boys were taken off a flight due to a nut allergy and the airline being unwilling to accommodate them. I can only imagine what they’d say if I asked for accommodation for citrus fruits especially on a morning flight where they’d usually be serving orange juice with breakfast.

Thankfully, I have travelled a great deal so being restricted to places that I can now drive to isn’t such a big deal. I have all of North America to visit and that’s a lot of places!