Another year older… Time to reflect

It’s my birthday today and as, is often the case, it led me to reflect on the past year.

I’m pleased to say that for the most part it’s been a peaceful year. I’ve not had any emergency hospital or emergency room admissions. I’ve come close, a few times, to anaphylaxis but have managed to mitigate the reaction fast enough by taking extra antihistamines and getting away from the source immediately.

Both my dogs are fit and healthy. Anything that Kai has eaten (he’s a goof ball off duty!) has been returned one way or the other. So no need for emergency surgery for him thankfully.

Relationship wise there have been a few friends that were friends for a reason or season and others that have proven that they’re here for a lifetime. Nothing difficult or hard to deal with; just the natural ebb and flow of life.

So I am actually delighted to recognise that I had a peaceful year. May this next one be just as peaceful!

Fibromyalga…

A few years ago I went down to southern Ontario to see a specialist about my Osteogenesis imperfecta. Whilst agreeing that I am atypical for my OI, in that I’m tall and most people with OI are short he also added a new diagnosis to my collection: fibromyalgia.

The new diagnosis answered a lot of questions for me as it explains a great number of my symptoms as depicted in the graphic for this Blog. However, treatment for fibromyalgia remains conflicted. Over the counter painkillers, antidepressants and anti-seizure drugs have all been shown to benefit some patients; especially, when combined with physical therapy, occupational therapy and/or counselling.

Unfortunately the weather seems to really affect fibromyalgia symptoms. Cold, damp days and drops in barometric pressure are widely associated with flare-ups in symptoms of the condition, which affects mostly women. Rapid changes in temperature can be problematic too.

On my worst days I feel as so I’m a hundred years old and every bone, joint and muscle hurts. On good days the pain is just there, underlying everything else going on with my health but not front and centre for a change.

So I wish our current weather would make up its mind. We’ve had some really hot days, too hot for me to even go outside as I burn so easily. Then we’ve had the cold, damp days as well. My body can’t seem to decide how to cope with this so my fibromyalgia flares despite the warmth due to the rapid changes in temperature.

Fibromyalgia is much more common than you might think. Recent studies suggest that it affects between 3-6% of the world’s population with 75-90% of those people being women.

To date, the cause of fibromyalgia remains unknown. Genetic studies are being conducted to see if genetics has a part to play. In many cases fibromyalgia is triggered by an accident or trauma of some sort. In other cases there seems to be no rhyme or reason as to why one person gets it and others don’t. It will be interesting to see the results of the ongoing research in this area over the coming years.

In the meantime, I apologise to those of you that I have had to cancel plans with due to a flare, or lack of spoons, and very much appreciate your understanding. With luck, we’ll see effective treatment within my lifetime!

Did you know that your iPhone can now act as a TTY device?

I have been having issues with the fact that to resolve a security issue with my credit card I can only use the telephone. They won’t allow you to deal with these issues by online chat or secure messaging. As you know I’m deaf, and the telephone is difficult for me. My new hearing aids help but for something as important as my finances I felt that it was important that I could communicate clearly.

So I complained to my bank that they only allowed telephone calls and didn’t appear to have a TTY number. (A TTY is text telephone). Not that I thought that I could call them using TTY as I didn’t think that I had a device; but it was the principle that I disagree with.

However, they kindly informed me that my iPhone is now capable of acting as a TTY device! So a few hours later I have my iPhone set up to act as a TTY device and accounts for IP relay or VRS (Video Relay Service).

I still didn’t have a TTY number for my bank. However, I could now contact them using relay services. Relay services are where I type my message to an operator who then speaks on my behalf to the person I’m communicating with. They type that person’s responses back to me so that the whole conversation is in text for me.

I’m proud to say that I just completed my first TTY relay service call! I actually used IP relay service as that uses my computer and gave me the advantage of a full size keyboard to work with rather than my iPhone’s keyboard. But the same system will work from my iPhone too.

I still disagree with the bank only allowing phone calls to deal with security issues. Especially, as using Relay I have to provide my account number, PIN and security question answers via the operator. So an unknown person now has my bank details. Ironically, that doesn’t seem very secure to me.

Just to be safe I have now changed my PIN. I also assume that there would be severe consequences for any Relay operator using the information they communicate in a call.

Anyway, for those of you that need it you can set up your phone under Settings, General, Accessibility, TTY. It’s great to be able to communicate so much more easily. Relay services can be used for personal calls too. Though the thought of having my conversation communicated through a third party disturbs me. However, it does mean that in a non 911 emergency I can get hold of help more easily than just relying on text.

It’s nice to see technology actually being used to improve accessibility. Welcome to the 21st Century!

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!