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!

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!

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!

A freelance writer is born….

Just under a year ago, I started this Blog as my first endeavour as a non-academic author. Since then, I’ve had an article published in an online forum and a poem selected for inclusion in an anthology; both under my pseudonym. The first was unpaid and the second payment is on a royalty basis and as one author among many royalties will be minimal and a long way off.

However, today I can count another milestone: My first article published as a paid freelance author. Yesterday I attended the Sault Ste. Marie Annual Dog Show. I then wrote about it for SooToday. Today, that article was published as “Dispatch from a dog show“. At the end of the month I’ll submit my invoice and I’ll be paid for what I wrote. Not it’s not going to get me out of debt in a hurry but it’ll certainly buy me a soy white-hot chocolate at Starbucks now and then and help me complete my bucket list.

Unfortunately with summer on its way I may need to stop them soon as fruit smoothies will start ruling the day and exposure to citrus becomes more problematic. However, I have enjoyed the occasional ones that I have managed. So whatever you drink, raise a glass with me, to me – Nikki Shaw – freelance writer!

Photograph courtesy of Kirsten Wilson.

One more rabbit hole dealt with…..

On the Easter weekend I took the decision not to blog for a few weeks. My health had gone down another rabbit hole and I was finding it overwhelming to deal with. Now that I’m through the worse of the rabbit hole it’s time to start blogging again.

Yesterday I had surgery. The thought of this surgery terrified me. I am allergic to general anesthesia and have come very close to death several times in the past thanks to it. However, I have to give a huge shout out to my surgical team. My surgeon and anesthetist took my concerns seriously and agreed to operate using just local anesthesia and sedation. As long as I could tolerate it. If I couldn’t then they’d have to put me under but would use different drugs than usual in an effort to stop the adverse reactions I’ve had in the past.

Apparently, I’m a superstar! I not only tolerated it but I tolerated it under such mild sedation I was allowed to go home the same day, rather than stay overnight as we’d been expecting that I’d need to do.

Today, I’m sore and morphine is my friend. However, aside from the surgical site itself I feel pretty good.

I now have to wait three weeks for the pathology results of the mass that was removed. All along the belief has been that it’s probably benign, and in fact when biopsied last year it was found to be benign then. However, since then the mass grew and changed in ways that made it imperative that it was removed.

If it’s not benign and I need to deal with radiation therapy or chemotherapy then I’m ready for it. Nothing is as scary as the thought of the surgery itself. Now that I’ve survived that I can deal with anything.

It was a very strange few weeks recently as part of me was completely convinced that I wasn’t going to survive the surgery; that I’d have an allergic reaction and die. It was an odd position to be in.

Yet once I arrived for the surgery itself and it became clear how much work the day surgery team had done to be ready for me; setting up a completely latex free operating theater just for me; making sure everybody knew at every handover that I have multiple allergies, was absent my service dog, and that I’m deaf; I felt more optimistic.

So this is a HUGE shout out to the day surgery team at my local hospital. They made a terrifying experience as positive as it could possibly be and made me feel validated and understood throughout.

Now I just have to take it easy for a while and let everything heal. One more scar for my collection!