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!

It’s a hard life…

So I just got back from my second camp at my seasonal site. I feel as so I now have pretty much everything there that I could need and will now only need to take food, clothes, charger for my hearing aids and my knitting!

As you can see from the picture – it’s a hard life for Molly & Kai when we’re camping! They both love it. We go for a walk every 2-4 hours. Not too far as my lungs aren’t up to that yet but there is a small hill to climb which is stretching my limitations in a good way.

Apparently the site is much busier on the weekends. The owners told me that there had been over 15 children there on the previous weekend. Much as I love kids, I think I’ll stick to going mid week where I can.

I still have 8 days of vacation to take before the end of June!

Anyway, this seasonal camping malarky is fun!

Seasonal camping…

A little while ago I posted about my internal debate as to whether I should take a seasonal campsite this year, or travel as I have in the past. I said that I’d let you know my decision.

So, as you can probably tell from the title, I have decided to take a seasonal campsite for 2019. I’ll be staying at the Busy Beaver campground near Hilton Beach on St Joseph’s Island.

The site that I thought I wanted wasn’t initially available but the campground owners, Steve & Lorraine, offered me a different site which is nicely tucked in the trees and so it will get plenty of shade. This is essential with two large dogs, my being a red head and not having any air conditioning! Ironically the first site did become available but after discussion I decided to stay with the site we’d agreed on.

So for the past week or so I’ve been gathering together things that I’ll need. Some of which I had, and others I had to purchase. Hopefully, I’ve pretty much got everything now and if I really do forget something essential at least it’s only just under an hour’s drive door-to-door.

My new adventure starts this coming weekend. I have tickets to see Crystal by the Cirque du Soleil on Saturday. So I’ll be moving on site on Sunday with a plan of staying there until Friday and actually taking some vacation time.

There is no WIFI on site but I have a skyroam device that I want to check out. This device uses cell towers to create a secure WIFI network for a simple payment per day, month or year. I have 13 day passes so I’ll start with them and see how it goes. I’m pretty sure that it won’t be good enough for streaming video but hopefully it will allow me to access my work files so that I can come back to the site over the summer and work from ‘home’.

The weather forecast is a bit unsettling as rain is forecast for most of the week. The forecast keeps changing though so hopefully the rain will blow through before Sunday and I’ll have a dry camp. I’ll be taking wellington boots just in case. Mine aren’t bright pink like the ones in the picture but they’re still flowery!

So I’m starting a new adventure – a seasonal camp site. I’ll let you know how it goes…

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!

Service dogs are not robots…

Kai, my service dog, is a complete goofball off duty but when his vest is on he’s like a different dog. I’ve got so used to how well he behaves on duty that I’ve not been keeping up with his training. There are tasks and obedience commands that I don’t use often and to keep them active I need to practise them with Kai frequently. So over the past couple of days we’ve started working on these commands/hand signals again so that he doesn’t forget them.

Additionally, I’m teaching him a new command.

On Saturday night I attended the musical ‘Shrek the musical’ performed by the Sault Ste Marie Musical Comedy Guild. It was a fabulous show. However, on this occasion I had to wait for my guest to meet me in the entrance way before the show. As you can imagine the area was full of lots of people milling around. Kai was a star and kept in a tight sit next to my legs but I was still concerned that he would get hurt as people don’t expect anything to be at his height and a lot of women’s bags are just at the height of his head.

As a result I decided that I want to teach him something that is called a between the legs heel. You’ve probably seen it if you’ve ever watched any shows with police or military dogs. It’s where the dog is between the handlers legs and moves in sync with the handler.

My reason for wanting to teach Kai this is so that I can protect him better in situations such as Saturday night. So a couple of days ago I decided to start teaching him the new command. Oh my gosh! It was like he was a puppy again. He couldn’t understand what I was asking for so tried everything he could think of to get the reward (food on this occasion). It was extremely funny but also somewhat frustrating. However, I soon realised that I had missed the first step, and went too fast, so I need to go back to the beginning and start building it up in steps.

While we’re at it, as mentioned earlier, I’m going to reinforce the tasks and commands that he already knows and keep them all fresh. It will only be ten-twenty minutes once or twice a day but knowing Kai he’ll soon be acing it all. Including the new command!

However, his reaction to my trying to teach the new command reminded me that Kai isn’t a robot. He’s a dog and he’s going to make mistakes. Just as I did in not breaking the command down into small enough pieces.

So when you see a service dog that isn’t acting in the way that you think it should I’d ask you to consider 2 things:

1. Could the dog be tasking for its handler? Kai, and many other service dogs are trained in intelligent disobedience. A good example of this is a guide dog refusing to step into a road despite the handler giving the command to move forward. Additionally, some tasks look odd if you don’t know what they’re doing.

2. Is the dog just having a bad day? It happens and sometimes life is such that you can’t just call it quits and go home for the day but you have to work through it with your dog. As long as the handler has full control and is correcting any inappropriate behaviour the best thing to do is leave them alone.

I’d also like you to keep in mind that handlers hold themselves and their dogs to incredibly high standards. If something is off I can guarantee the handler is well aware and trying to work out the best way to deal with the issue as fast as possible.

But most of all, please remember that service dogs aren’t robots!

Photo Credit: Megan Parlow