For everyone who is wondering about how the dreaded 6-min walk test went on Wednesday, the answer is that it got pushed to Friday! And today it got pushed to Monday! The physiotherapist on Wednesday had thought that today's physio time would be slower and therefore easier for them to take the time for it. But then today someone else with higher priority than me showed up requiring a walk test before they could be discharged and a few new people were there so the one physiotherapist there today was too busy. I think they are missing the physio student who was there for all of Nov-Dec.
I did bond with another pre-transplant person when she commented that I probably wasn't too heartbroken that there wasn't time for me to do it today. Obviously there is a common dislike for having to push yourself as hard as possible for 6-minutes while being told that your oxygen levels suck.
So, something to look forward to on Monday! I'm not sure if this is something to be pleased about or not. On one hand, I am happy as it means I didn't have to do it and I get a bit more recovery time for my headcold (which I'm pretty much over. Only snotting now when I go out in the bitter cold and I'm pretty sure that would be happening without a headcold) . On the other hand, it means it gives me something to wonder about all weekend. My secret plan is to have it keep being pushed back until I get my transplant and then post-transplant, I'll feel so awesome that walking 6-minutes as fast as possible will be a breeze.
I think it is a stellar plan.
Friday, 28 February 2014
Wednesday, 26 February 2014
Fighting with the TTC.
Isaiah and I recently learned that in January, the TTC (Toronto Transit Commision), brought in a program where people with a disability can have a support person accompany them for no extra cost on the bus/subway as long as they require assistance during the transit or at the destination. Awesome right? Yes.
The person with a disability just needs to apply for a 'I have a disability and need a support person with me or at my destination' card and since no one knew about the program, they are letting people use the honor system until March 30th to give everyone time to have their medical people fill out the paperwork, get passport pictures taken, and have the cards processed.
Ever better right? Who doesn't love the honor system?
Bus drivers, that's who!
This morning, Isaiah and I decided we should take start taking advantage of this program since the only reason he is taking the bus is because he is my support person at physio (and let's face it, people with disabilities have to take advantage of the few perks they can get). Plus I took my oxygen in my wheely cart again today and he can carry it up and down the stairs a lot easier than me. I would think that I am the prime target audience of this new program as I require a support person at my destination but do not have a disability which requires the wheelchair bus service and once I get my transplant, I will continue to be a paying customer of the TTC.
Great! Except the bus driver this morning had no idea what we were talking about. Isaiah got on the bus after me and told the driver that "I'm her support person, she just hasn't gotten the card yet." The bus driver replied with a "What are you talking about? You still have to pay. What is this program? Where did you get the idea that you could ride for free?"
After a lengthy discussion trying to explain the program to the TTC driver and describing how all the information is available on their website saying the honor system can be used until March, the bus driver finally agreed to let Isaiah on but was obviously not happy with it. He said he never heard of the program and that he would have to look into it further. I'm pretty sure he thought we were trying to scam the system.
Arggggghhhh. This pisses me off on so many levels.
Level 1: The TTC brought in this great program but obviously neglected to inform their drivers.
Level 2: Because drivers are not informed, in order to use the system, a person with a disability or their support person will have to fight every single time they want to take advantage of the program. Not because bus drivers are bad at their jobs, because they are not informed and therefore skeptical about people trying to get a free ride. That is exhausting to both the bus driver and the person with disability.
Level 3: Isaiah and I are the most non-confrontational people in the world so having to argue with the bus driver every time we travel to the hospital is a nightmare to me. I would rather drive than go through that three times a week.
Level 4: Because of our experience using the system the one time, after physio Isaiah ended up just paying because we were both too tired to argue with another TTC worker. I know that as an educated person with a disability, I have to stand up for my rights because no one else is more qualified than me. However, arguing is exhausting and I spent an hour and half exhausting myself at physio so I had no more energy for it today.
After the bad experience today, I am off tomorrow get my passport pictures done for the ID card. Even with the card, I'm sure the bus drivers won't have any idea what I'm talking about as they obviously weren't informed about the program. I still think we will have to argue every time we use the card and I'm not looking forward to it. I can only imagine the arguments that will take place post-transplant when I still require support but no longer need oxygen so I won't look like I have a disability. Argh!
Seriously TTC admin people, how hard is it to send a email to your bus drivers to tell them about your new program? If you are too understaffed to write a email, I will give you an example you can use.
"TTC employees: A new program has been implemented to allow people with disabilities to have a support person accompany them on the transit system. Only one fare will be required for both the person with a disability and the support person. Because we suck at PR and no one knew about this program until now, we are letting people use the honor system until March 30th. Don't worry about people trying to scam the system because if the people with disabilities don't know about the program, the general public definitely won't be informed. Take people at their word and remember that young people can have disabilities too. Don't be a asshole. Thank you."
The person with a disability just needs to apply for a 'I have a disability and need a support person with me or at my destination' card and since no one knew about the program, they are letting people use the honor system until March 30th to give everyone time to have their medical people fill out the paperwork, get passport pictures taken, and have the cards processed.
Ever better right? Who doesn't love the honor system?
Bus drivers, that's who!
This morning, Isaiah and I decided we should take start taking advantage of this program since the only reason he is taking the bus is because he is my support person at physio (and let's face it, people with disabilities have to take advantage of the few perks they can get). Plus I took my oxygen in my wheely cart again today and he can carry it up and down the stairs a lot easier than me. I would think that I am the prime target audience of this new program as I require a support person at my destination but do not have a disability which requires the wheelchair bus service and once I get my transplant, I will continue to be a paying customer of the TTC.
Great! Except the bus driver this morning had no idea what we were talking about. Isaiah got on the bus after me and told the driver that "I'm her support person, she just hasn't gotten the card yet." The bus driver replied with a "What are you talking about? You still have to pay. What is this program? Where did you get the idea that you could ride for free?"
After a lengthy discussion trying to explain the program to the TTC driver and describing how all the information is available on their website saying the honor system can be used until March, the bus driver finally agreed to let Isaiah on but was obviously not happy with it. He said he never heard of the program and that he would have to look into it further. I'm pretty sure he thought we were trying to scam the system.
Arggggghhhh. This pisses me off on so many levels.
Level 1: The TTC brought in this great program but obviously neglected to inform their drivers.
Level 2: Because drivers are not informed, in order to use the system, a person with a disability or their support person will have to fight every single time they want to take advantage of the program. Not because bus drivers are bad at their jobs, because they are not informed and therefore skeptical about people trying to get a free ride. That is exhausting to both the bus driver and the person with disability.
Level 3: Isaiah and I are the most non-confrontational people in the world so having to argue with the bus driver every time we travel to the hospital is a nightmare to me. I would rather drive than go through that three times a week.
Level 4: Because of our experience using the system the one time, after physio Isaiah ended up just paying because we were both too tired to argue with another TTC worker. I know that as an educated person with a disability, I have to stand up for my rights because no one else is more qualified than me. However, arguing is exhausting and I spent an hour and half exhausting myself at physio so I had no more energy for it today.
After the bad experience today, I am off tomorrow get my passport pictures done for the ID card. Even with the card, I'm sure the bus drivers won't have any idea what I'm talking about as they obviously weren't informed about the program. I still think we will have to argue every time we use the card and I'm not looking forward to it. I can only imagine the arguments that will take place post-transplant when I still require support but no longer need oxygen so I won't look like I have a disability. Argh!
Seriously TTC admin people, how hard is it to send a email to your bus drivers to tell them about your new program? If you are too understaffed to write a email, I will give you an example you can use.
"TTC employees: A new program has been implemented to allow people with disabilities to have a support person accompany them on the transit system. Only one fare will be required for both the person with a disability and the support person. Because we suck at PR and no one knew about this program until now, we are letting people use the honor system until March 30th. Don't worry about people trying to scam the system because if the people with disabilities don't know about the program, the general public definitely won't be informed. Take people at their word and remember that young people can have disabilities too. Don't be a asshole. Thank you."
Tuesday, 25 February 2014
Spring Rolls.
Last week when my cousin came to visit and play board games, Amy and I made delicious spring rolls. Yum! The only problem with making stuffed food is that the filling is so easy to make so it is easy to make way too much and then it takes forever to wrap it up. But it was worth it in the end and we were eating the left overs all week.
Dipped in a soy sauce + peanut butter mixture of which I forgot to take a picture.
Dipped in a soy sauce + peanut butter mixture of which I forgot to take a picture.
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| Soaking the rice paper. |
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| Filling: vermicelli noodles, grated beets, grated carrots, bean sprouts, and sweet chili sauce. |
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| Our first three rolls! They got progressively larger as we went. |
Monday, 24 February 2014
No more excuses to skip physio.
I went back to physio today! It was really hard to motivate myself to get out of bed this morning but seeing as I missed all last week and am feeling more energetic, I didn't really have a valid excuse not to go. Also, physio is a requirement for being on the lung transplant list so I do have to go regularly otherwise they can say that I'm refusing treatment and kick me off the list (no better motivator than "it is the only way the hospital will give you new lungs" to get me out of bed in the morning). It's just soooo boring. The routine never changes and never gets any more exciting.
So I drug myself out of bed this morning and took myself to physio. I tried taking the oxygen tank in my push cart today instead of my backpack as the snowbanks have mostly disappeared. It worked ok except that it was annoying having to lift up and down the stairs on the street car and over all the curbs. And then my arm got tired of dragging it around so my conclusion is that there is no easy way to carry around a oxygen tank.
Once I got to the physio room, it was super hot in there. I really hope this is just a winter thing and they have air conditioning that they crank in the summer. I mean, I always complain about it being too hot for exercising but I get very little sympathy from the people who don't have to move in the heat (*ahem Isaiah*). However, even he found it hot in the room today so he didn't complain when I demanded (I mean, 'asked nicely') for him to move the fans every time I switched equipment. They really need more fans! It is unbearable without any moving air, some people don't turn the fans on or even shut them off and I don't understand it at all.
The physiotherapist seemed fine with me missing last week. It's better for everyone if people stay home when they are sick because everyone post-transplant has to be even extra careful about cold germs. Today she just wanted to make sure everything was okay and to remind me to take things slower if I need too. I also missed my walk test last week so I'll get to do that on Wed. Too bad I don't get to skip it entirely! I'm kind of dreading it seeing as I got so frustrated after my last one and I can't imagine Wed is going any better.
After physio, I finally got myself a new hospital card (here in Toronto, you get a medical card for the specific hospital) as mine did a disappearing act sometime last month. I still have my NS health card and I always keep the two of them together so I'm super confused about how it went missing. I kept putting off replacing it as I was expecting it to randomly show up in a coat pocket but I had to get my 'quarterly (I really wanted to say tri-monthly but I'm being told that isn't a word) antibody testing' blood work done this week and I needed a hospital card to register. It literally took 2 minutes to get the new card so it really made no sense that I put it off for so long and I'm sure the original card will now show up at the bottom of my backpack tomorrow.
So I drug myself out of bed this morning and took myself to physio. I tried taking the oxygen tank in my push cart today instead of my backpack as the snowbanks have mostly disappeared. It worked ok except that it was annoying having to lift up and down the stairs on the street car and over all the curbs. And then my arm got tired of dragging it around so my conclusion is that there is no easy way to carry around a oxygen tank.
Once I got to the physio room, it was super hot in there. I really hope this is just a winter thing and they have air conditioning that they crank in the summer. I mean, I always complain about it being too hot for exercising but I get very little sympathy from the people who don't have to move in the heat (*ahem Isaiah*). However, even he found it hot in the room today so he didn't complain when I demanded (I mean, 'asked nicely') for him to move the fans every time I switched equipment. They really need more fans! It is unbearable without any moving air, some people don't turn the fans on or even shut them off and I don't understand it at all.
The physiotherapist seemed fine with me missing last week. It's better for everyone if people stay home when they are sick because everyone post-transplant has to be even extra careful about cold germs. Today she just wanted to make sure everything was okay and to remind me to take things slower if I need too. I also missed my walk test last week so I'll get to do that on Wed. Too bad I don't get to skip it entirely! I'm kind of dreading it seeing as I got so frustrated after my last one and I can't imagine Wed is going any better.
After physio, I finally got myself a new hospital card (here in Toronto, you get a medical card for the specific hospital) as mine did a disappearing act sometime last month. I still have my NS health card and I always keep the two of them together so I'm super confused about how it went missing. I kept putting off replacing it as I was expecting it to randomly show up in a coat pocket but I had to get my 'quarterly (I really wanted to say tri-monthly but I'm being told that isn't a word) antibody testing' blood work done this week and I needed a hospital card to register. It literally took 2 minutes to get the new card so it really made no sense that I put it off for so long and I'm sure the original card will now show up at the bottom of my backpack tomorrow.
Saturday, 22 February 2014
Waffles with lemon spread.
My friend from Halifax texted me this morning to say how great the weather and market was this morning. Oh how I miss the market (and great weather). I realize there are probably a million markets here but none are the Halifax Seaport with their coffee and waffles. Since no one was going to send me Halifax waffles, I decided I should make my own.
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| Step 1: Make delicious lemon spread. |
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| Step 2: Make delicious waffles and smoother with lemon spread. |
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| Step 3: Make delicious coffee and smoother with whip cream. (Note: I didn't take this picture in the bathroom, we ran out of kleenx and I have resorted to using toilet paper.) |
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