Sometimes being stubborn is what’s needed…

Sometimes it’s hard not to think that life is out to get me. On Monday, I posted about finally feeling like myself again having had a day out in the form of a road trip on Sunday.

On Monday I had some follow-up tests due to one of those rabbit holes we dropped down when trying to find the cause of my breathing issues, just as a precaution, and the results came in yesterday and they’re not good. So I’m back to that specialist next week.  First appointment after the holiday weekend.

It just seems that for the last year, or two, that every time I start to feel as so I’m getting a handle on life again that something else comes to try to knock me flat.

Well this weeble may have been slow in recovering her equilibrium over the past two years and it might be taking me longer to get back up; but I’m getting back up and will deal with this issue as it comes. I’ll also work hard at not worrying about the unknown and the suspected in the interim.

In reality nothing has changed since Sunday. I had the same issue then, I just didn’t know it. So I’m going to hold on to the good feeling from Sunday and use that to help me through the next few weeks.

I’m on the path to health and while it seems to be an especially twisty path I will get there!

I’m too stubborn not to!

 

 

Just for one day I started to feel like myself again….

Yesterday I felt like myself again, just for a day. It was wonderful. I packed up snacks and emergency survival equipment, loaded up the dogs and hit the road. It was wonderful to feel well enough to just drive….

So Molly, Kai and I went to visit the home of Winnie-the-Pooh, White River, Ontario.

The day was mostly spent driving as it’s a good 4 1/2 hours from Sault Ste. Marie. However, it was a nice sunny day for the most part. Though I drove through two storms on the way home just in time to beat the massive thunderstorm that hit last night.

Some gorgeous views and amazing sights. I saw moose and birds of prey. The lakes were starting to unfreeze so the edges were mixed between waves and open water and icebergs. Some of the waterfalls were just flourishing with the snowmelt.

I loved the sense of humour of whoever was naming some of the lakes. At one point there was ‘Mom Lake’ and ‘Dad Lake’ just next to it. Just as I was wondering what you’d call a third lake I came upon ‘Orphan Lake’ just far enough from Mom and Dad to be orphaned!

It was a lovely day out and the dogs loved the ride and the walk by the Winnie-the-Pooh memorial. Next time we’ll have to go when the museum is actually open and see if I can handle the scents.

However, for right now just getting out for the day was such a huge step for me after almost a year of being mostly housebound. I’m only extending my limits to my vehicle but now that I’m well enough to drive like that again…. it’s wonderful!!

Even with the thunderstorm last night all three of us slept well last night!!

Success at achieving some of my bucket list items!!

In the past couple of weeks I have managed to achieve several items on my bucket list and I’m so excited that I just had to write about it again, without adding new items just yet.

You might remember that my list is currently up to 20 items with some having been italicized to mark them as in progress the last time that I reviewed the list.

  1. At least once a month, taking appropriate precautions, get out and do something social
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work
  11. year-long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic
  18. At least once a day, do something creative
  19. Resume dress-making
  20. Train Kai in Rally Obedience

Firstly, I’ve kept up with my aim of doing something social once a month, and with the help of the public library, their scent free policy and an extremely helpful librarian and other book club members, I was able to attend a book club meeting! That’s #1 on my list met for this month.

My hair hasn’t reached my waist yet but it is significantly longer than it was – if I straighten it – marking progress towards item #6. I also think that if I was 5′ something, instead of almost 6′ tall, that it would be waist length on almost anybody else!!! Though that would be cheating!!

I’ve pretty much come to terms with my RADS diagnosis though I’m still frustrated by the limitations especially as I have finally made it back to work admittedly in a very restricted fashion. So that’s major progress towards items #9 and 10.

While it wasn’t quite planned, I even managed #17 and had a picnic in my car earlier this week. I’d had a doctor’s appointment at the hospital and only just under two hours later also had a group to attend at the same hospital. Given the extortionate cost of parking I sat in my car for an hour and read my book, having a picnic lunch!

Lastly I got out my sewing machine and whilst I haven’t made a dress yet, I have turned an old T Shirt that I couldn’t bear to throw away into a cushion and I’m part way through a bigger project. #19 can be checked off!

  1. To be a bridesmaid
  2. To visit New Zealand
  3. To live on the ocean
  4. To own a Class B motor-home (Roadtrek ideally)
  5. Day-trip to Frankenmuth & Bronners
  6. Reschedule & enjoy my belated 45th birthday vacation
  7. year-long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  8. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  9. Visit Harrison Hot Springs in BC
  10. Go indoor skydiving
  11. Attend the Albuquerque International Balloon Festival
  12. Train Kai in Rally Obedience

If I take out all that have been accomplished or had significant progress made, as you can see, a lot has been accomplished in the last couple of weeks. So much so, that I’ll have to start thinking of some new items for my list as 8 of them have now been marked as either “in progress” or “accomplished”. It’s a great feeling!

How’s your list coming along?

 

Bucket List – Items #14 – 17

It’s been a while since I worked on my new bucket list. At my last count I had 13 items…

  1. Coffee with a friend in our local Starbucks
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motorhome (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.
  11. year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather

If you’ve been reading my posts you’ll know that I was able to do a little towards number 13. Unfortunately, my reactivity then increased and the weather deteriorated so I haven’t been able to get out much in the past few weeks. Hopefully, that will change soon.

I’m also actively working on items 9 and 10.

I haven’t managed to cross any off completely yet but some of them are within sight, which is a good feeling.

So what’s next?

A trip to Harrison Hot Springs in BC. I’ve visited a number of times both staying in the resort with their pools, which make use of the hot springs themselves, and camping in the area using the local pool to access the Hot Springs. Unfortunately the sand castle competition, which I’ve visited in the past is no longer running. However, there are lots of other events in the summer to experience.

I’ve always loved the idea of skydiving and have a good friend back in Edmonton who was a member of a local group and I went out often to watch them on the weekends. However, with brittle bones it’s not really advisable for me. However, I was reading the other day about indoor skydiving and how a centre down in the USA had been able to help a child with much more severe OI than I have skydive safely. So I’m going to add indoor skydiving to my list. It may not be in Niagara but at least I know there is somewhere that does it and maybe I could plan it for next year, along with attending the Niagara wine tasting festival that I had to cancel attending this year.

When I was a student in England my first husband had a good friend whose dad was getting his pilot’s licence as a hot air balloon pilot. As a result, we spent many weekends camping and chasing that balloon all over the English countryside. Usually a group of us would get together at a balloon meet, often held at a Stately home during a festival or fete and due to the weather conditions we’d fly early morning and just before dusk in the evening. This was before cell phones were prevalent so air-to-ground radio was all the communication we had, if we were lucky. We had some amazing adventures. I tended to drive the chase vehicle leaving others to navigate (following the balloon by sight and matching that to the roads on the map and the best way of getting to it to retrieve the balloon and passengers once they landed). Anyway, during that time I heard a lot about the Albuquerque International Balloon Festival and always wanted to attend. So that’s also on my list.

All three of these bucket list items include extensive travel so given my current health restrictions perhaps I’d better add something a little more realistically attainable at this time….

Go on a picnic. Nice and simple and at this time of year it will involve staying in my car. However, there are some lovely places within a few minutes drive of my home (That are also not far from the local Emerg and that also have cell cover) where I could pack up the dogs and take a picnic to sit for a little while looking out at the countryside or the St. Mary’s River or Lake Superior. Stretching my boundaries a little from only ever leaving home to attend medical appointments or very rarely to pick up groceries.

So here’s my updated list:

  1. Coffee with a friend in our local Starbucks
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motorhome (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.
  11. year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic

 

Items for my Bucket List – #11 – 13

Continuing on with the theme of thinking up a new Bucket List I came up with a couple of new items. As you may remember I was up to 10 items before:

  1. Coffee with a friend in our local Starbucks
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motorhome (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.

So number 11 is a year long road trip following 70 degree (21 C) weather throughout the contiguous United States.

RVing.how has developed a route that follows the perfect weather for camping. Warm but not sweltering. I still have to work out how to extend my stay in the US past the normal 90/120  day maximum for Canadians without becoming liable for US taxes. However, it would seem to be possible to stay for up to 182 days with the right paperwork and given that the route actually runs through Canada and near the Canadian border for the months of June through July it certainly looks possible.

70-degree-rv-trip

Number 12 is more practical. Being on steroids for so long has caused a huge amount of weight gain. While there isn’t much that I can do about it while I’m still on the steroids, number 12 on my bucket list is to start walking again as soon as I can in an endeavour to get my weight back down to a healthier level.

Right now that means using my Wii Fit program to walk in the safety of my home environment. With time I hope to be able to get back outside to walk, even if it’s only around my back yard initially. With time I’d like to be able to get back to walking round the Essar Centre.

Beyond that there are a number of walking routes around the city that I’d like to try, as well as the Hub Trail itself. Eventually, I’d like to get further afield and actually start walking hiking routes again too and some of the longer routes around the local area just over the border in Sault Ste Marie, Michigan.

Once the snow comes I’ll hopefully be able to use the snowshoes that I  invested in last year in end of season sales and get out on some of the showshow trails as well.

Walking is about the safest activity for me as long as I take it easy and build up stamina slowly. Hopefully, being outdoors will help my lungs too and the chances of being exposed to perfumes and scents should be minimal.

The best part is that my dogs get to be with me as well for all but the Essar Centre inside walking; though Kai could join me for that.

So perhaps item 12 should be split into 2: lose weight safely and get out walking / snowshoing as possible.

So my list is now up to 13 items.

  1. Coffee with a friend in our local Starbucks
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motorhome (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.
  11. year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoing as determiend by the weather

How is your Bucket List doing?

Canadian Disability Legislation – An exemplar in complexity

One of the commitments that Trudeau made when campaigning was to develop federal disability legislation. A year on and there is some activity in this area.

Carla Qualtrough, who is the first ever minister responsible for people with disabilities has put out a call for consultation regarding the proposed ‘People with Disabilities Act’ or ‘Accessibility Act’.

What is disheartening is that since July, when she made this call, only 700 people have commented yet there are 2.1 million Canadians (over 15 years of age) who face communication or physical barriers.

Why aren’t these people speaking up?

Perhaps because ironically, the announcement about the consultation has not been well communicated. You have to navigate your way to a sub page of  Employment and Social Development Canada to find the consultation information. Once there, the call is provided in ASL and audio versions as well as in plain text. However, unless you know to look for it it’s pretty difficult to find.

So for those that are interested, here is the link. Whether you consider yourself disabled now or not, you probably will need accessibility to be provided for you at some point in your life, even if only due to old age. So this does impact you. Please comment!

The stated timeline is that a report will be made available on the consultation in February 2017 with the new legislation to be introduced in the fall of 2017, or spring of 2018 at the latest.

While I applaud the efforts to provide a quicker process for accessibility issue resolution, than a Human Rights Complaint, I do worry that all that this new legislation will do is make an already complex area of law even more complex.

My concern is that while this is proposed as national legislation Qualtrough has been quoted as saying that:

“…she expects the law will establish some kind of standard or guideline for federally regulated employers and service providers for ensuring accessibility and fairness for Canadians with a disability. That would include banks, interprovincial travel such as trains and airlines, and telecommunications.”

My concern with this is that it leaves all the provinces and territories free to continue with their own legislation.

So as a disabled person I will continue to have to navigate my way between each jurisdictional law in my home province, and all others when I travel within Canada, as well as this new federal law for federally regulated organisations.

I’m also not optimistic that this new law will bring compliance very quickly unless it has serious consequences for non-compliance and a fast, complaints procedure that is enforced at a local level.

Ontario has had the AODA since 2005. However, as Ontario still has another 8 years to become fully compliant with this legislation it is apparent that many organisations will not bother to work towards compliance until the final deadline applies. If you think that I’m exaggerating just go and look at any new building – many are still being built that do not comply with the AODA.

Worse still, even when you know the law and try to assert your rights in Ontario local police will not, or can not, enforce them and so you’re left with making a Human Rights Complaint which currently takes years to resolved.

What might help is if Canada took a leaf out of the USA’s book and established federal legislation that takes priority over jurisdictional legislation, whenever it is least restrictive.

The USA established their federal legislation is this area 26 years ago: The Americans with Disabilities Act 1990 (ADA). The advantage of the ADA over what seems to be being proposed in Canada is that while states are welcome to establish their own accessibility legislation the least restrictive law always applies. As a result the ADA is often the law that applies making life much simpler for the disabled to navigate.

Qualtrough hopes to achieve this in one area alone. The definition of disability itself where she hopes:

“…to develop a common definition for disability that would apply to all federal laws and regulations and eventually be adopted by the provinces.”

I don’t understand why we can’t have one accessibility/disability law that applies across the entire country. That has serious consequences for non-compliance, that the local police are educated in and can enforce, and for which there is a simple complaints procedure that is also accessible.

Isn’t it time to simply enforce the Canadian Charter of Rights and Freedoms for all?

Trudeau, it is 2016 after all.

Celebrate life – Thanks for the memories Miss Norma

Miss Norma died today, at the age of 91.

She was born in 1925.

Can you imagine all that she has seen in her lifetime? To give you some idea here are some of the major events that came to my mind when thinking over the  period of her life.

  • The first Mickey Mouse films in 1928.
  • Amelia Earhart’s solo flight across the Atlantic in 1932.
  • King Edward VIII abdicating the British throne in 1936.
  • World War II.
  • The introduction of colour television in 1951.
  • The Vietnam War.
  • The first space flights by Yuri Gagarin and Alan Shepard in 1961.
  • The assassination of U.S. President John F. Kennedy in 1963.
  • The assassination of the Reverend Martin Luther King, Jr. in 1968.
  • Neil Armstrong walking on the moon in 1969.
  • Disney World opening in 1971.
  • The invention of the cell phone in 1973.
  • Watergate in 1974.
  • IBM introducing the personal computer in 1981.
  • Chernobyl nuclear accident in 1986.
  • The Berlin wall coming down in 1989.
  • The invention of the World Wide Web in 1990.
  • The Gulf War.
  • End of apartheid in South Africa and election of Nelson Mandela in 1994.
  • 9/11 in 2001
  • Iraq War
  • Barack Obama being elected President of the United States in 2008.
  • A 7.0 magnitude earthquake in Haiti killed 230,000 in 2010.

Why am I talking about Miss Norma today? I never met her. I don’t know her in person, or any of her family. Yet in some ways I feel as so I do.

Just over a year ago, Miss Norma’s husband of 67 years died. Within 2 days of his death she was told that she had what was probably terminal cancer. She faced months of chemo and radiation, if she survived the initial surgery. Instead of going through treatment, Miss Normal hit the road.

Since then, Miss Norma has been traveling with her son, Tim, her daughter-in-law, Ramie, and Ringo the poodle, throughout the US in a RV. They have been posting their adventures on Facebook and almost half a million people have been following them.

I know that I initially wondered how Tim and Ramie were able to do this. In case you are too – when I looked a little more into it I found that Tim, Ramie and Ringo started living full-time in their RV in 2006 and record their own adventures on a Blog page, so it wasn’t the complete change of lifestyle for them as it first appeared to be.

Knowing that, it seems that Miss Norma simply decided to join in their fun!

As one of the followers of their Facebook page, I have shared in their celebrations of a year on the road, visits to lavender farms, petting zoos, beaches on both the Atlantic and Pacific Oceans, aquariums, national parks, national monuments to name but a few. She’s been horse-riding, sailing and taken carriage rides and a hot air balloon ride.

Miss Norma truly spent the last year of her life celebrating every possible moment.

Today, for the first time her full name was posted. For the past year she has simply been Miss Norma, beloved by many.

Take a few moments to read their story.

Look at the photographs.

Reflect on your life.

I have no doubts that Miss Norma left this earth today with few regrets, with a completed bucket list, and her family knowing that she died having celebrated life.

What a wonderful legacy.

What will yours be?

Norma Jean Bauerschmidt
March 31, 1925 – September 30, 2016

(c) The source of the photograph of Miss Norma is: https://www.facebook.com/DrivingMissNorma/
Last accessed 30th September 2016