No 6-min walk test for me!

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. 

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."

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.

Soaking the rice paper.

Filling: vermicelli noodles, grated beets, grated carrots, bean sprouts, and sweet chili sauce.

Our first three rolls! They got progressively larger as we went.

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.

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.

Step 1: Make delicious lemon spread.

Step 2: Make delicious waffles and smoother with lemon spread.

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.)

More books!

Having grossly underestimated the demand, I am pleased to report that the second batch of books have arrived in NB! Frenchy's and Scotiabank in Petitcodiac have graciously offered to sell copies so stop in and pick up your copy today!

Don't forget the e-version is available to download if you don't want to leave the house.

Thank you everyone!

Amy and Alley's Toronto adventures!

It has been another day of snotting but I am feeling a bit better in general I think. However, that may be because I haven't really done anything. So in deference of the week that may or may not have possibly led to all the snot, here are some of the exciting things Amy and I did during her trip to Toronto.

We looked at some fancy art that didn't allow photos.

We looked at some less fancy art that allowed photos.

As previously mentioned, we hung out at the CBC building.

And ate the most delicious sushi to be found in Toronto! (not at the CBC building)

Went to the theater. It was a story told through tango which sounds weird but totally worked.

We tried our hand at pottery.

I now have a greater appreciation for pottery and understand why it cost so much.

Success! Two bowls that were actually round and the sides did not fall apart! I pick them up in two weeks.

And we saw a mummy!

Amy and Alley go to the zoo!

Last Sat Amy and I went to the zoo to see all the new zoo babies! I think you will enjoy them more than the ones of my kleenx piles which has pretty much been my day. I did have a massage today (they come to the apt so I didn't have to go anywhere) and it was amazing but I think it may have actually increased the amount of snot coming out of my face.

So without any further mention of snot, here are pictures of adorable animals:

Mr. Panda being as adorable as ever enjoying a bamboo feast.

Baby polar bear playing with a bucket! The level of cute was overwhelming.

Another one of the baby polar bear because who could resist those eyes.

Sea horses are pretty cool too but there were no babies.

Baby gorilla! She was pretty sleepy.

Harvey, a pigmy hippo, was playing with the white ball trying to match the level of adorableness of the babies.

Mr. Rhino was happy just to drink some water.

Mrs Orangutan was sad that everyone was hanging out with the polar bear.

Long weekend!

I'm still here! I unexpectedly ended up taking a long weekend from blogging! Family Day is awesome and every province should hurry up on adopting a holiday in February. I mean, who doesn't like a break for one weekend in the middle of winter? Physio was closed (hurray!) so instead, Amy, Isaiah, and I, along with all the children of Toronto, went to the ROM for the afternoon. I wasn't feeling super energetic so we didn't stay very long but managed to visit the Egyptian mummies, the National Geographic Photo Exhibit, and learned about the design history of Europe.

Then I woke up today with a crazy stuffed nose and sore throat. It's like the snot fairies came to visit overnight. It is possible that perhaps I overdid it with Amy this past week and this may be the consequence of an event filled week. The other theory I have is that I ran out of my daily antibiotic last Thursday and couldn't get any shipped up until today so perhaps in the few days without the antibiotic, my body decided to host a party for all it's germy friends. Or maybe it was because of all the children at the ROM who like to touch everything. I will blame the children.

The plan today is to drink multitudes of lemon ginger honey tea, nap, read silly books, eat soup and crackers, and start up my antibiotic again. If that cure-all plan doesn't work, I'll have to call up the doctor to get something stronger. My head cold made Amy flee back to NB in an attempt to stay healthy (or perhaps she already had her flight booked). I'm sure Isaiah would have liked to flee with her but he is stuck here cleaning up my gross kleenexs and bringing me tea. He is good that way.

I hope everyone with a long weekend had an enjoyable one and that everyone who had to work will just enjoy the Easter long weekend that much more.

Happy Valentines Day!

Amy and Alley search the CBC building for Jian

Amy and I went to a taping of Steven and Chris today.  We were also on a quest to track down Jian Ghomeshi!

We took some photos along the way:

Waiting to go into the studio. See that garlic bread? It will come out of the oven 'ready to serve' in a few hours.

Inside the studio! The Governor General made an appearance but no Jian to be found.

Steven and Chris were too busy to answer our questions.

The giant Rick Mercer picture did not provide any clues.

Amy tried to sneak into the employee only section to see if she could find him there.

When that failed, she thought pawing at his giant picture might make him appear. It did not.

He was not hanging out by the FIFA World Cup.

His second giant poster confirmed our fear that he really is in Sochi and not here to hang out with us.

So tired of motivational posters

I discovered this week that I can stream the Olympics on my phone at the hospital during physio. Hurray for hospital wifi! It also helps that CBC has great online coverage for all of the sporting events. Today I watched the womens snowboard halfpipe. It was very exciting. It is a much better way to pass the time while I am on the treadmill and exercise bike than staring at all the motivational posters. I am not one for motivational posters as I tend to take everything to a level of absurdity.

Like the example below "If you can dream it, you can do it." by Walt Disney.

Well, Walt, I have some pretty crazy dreams at night. I have dreams where I can fly, and breath underwater, and can jump over buildings, and walk through walls. I even dream that I will one day be looking down on earth from my moon castle but that probably isn't going to happen either.

More practically, I dream about traveling around the world and running marathons and climbing mountains and cycling trips. I can not do any of those things no matter how hard I dream. Maybe I will be able to do those things again one day (not that I was ever able to run a marathon due to my love of 'doing anything other than run') but not in the foreseeable future. Telling me that if I can dream it, I can do it just makes me feel bad about all the dreams I have that I can't fulfill.

I realize that I have spent way too much time thinking about this poster but in my defense, I do stare at it for 20 minutes three times a week. I think they need to start rotating their wall art. Or maybe I should start drawing pictures for them so they can move this poster out of my area of the room. I could write appropriate quotes such as 'if you have realistic dreams and work hard toward the goal, you may be able to do it. But sometimes it is out of your control. Learn how to deal with it.' I don't think they would sell very well. 

It is really hard to take a clear picture while walking on the treadmill. Also, what's with the boat? Are we suppose to have boat-related dreams?

Waiting game: 4 month update.

It has been four months since I was listed. 

Here are some of what has been happening the last two months (since I forgot to do a 'three month' update):

- I continue to go to physio three times a week. I am up to 7lb and 8lb weights! And am now walking with an 3% incline on the treadmill! My legs are getting super toned...ok probably not 'super toned' but I'm definitely killing it at the squats. It would be nice if the routine varied a little bit but I guess the one bonus to the repetition is that I have everything down so I could do it in my sleep.

- I wear my oxygen almost all the time now. Well, when mostly when I go anywhere as that is when my oxygen levels drop the most. I bought a oxygen stat monitor so now I know when my levels go down which is good because now I know when I need to wear the oxygen and annoying at the same time because now I know when I need to wear the oxygen. While I was wearing the oxygen, a guy in the elevator asked if I was a climber which confused me. He was then confused about my confusion as I had no idea what he was talking about and replied that I had crappy lungs. I'm pretty sure climbers around Toronto don't get high enough to require extra oxygen. Another person on the bus sat down beside me and then noticed the oxygen and moved while saying she shouldn't be around me because she was just getting over a cold.

- I had a mild infection in mid-Jan. I fortunately had a doctor appointment with the transplant clinic already scheduled that week so I was able to get on antibiotics quite quickly. I have finished the antibiotics and feel mostly recovered even though I'm still a bit more tired than usual. At the CF clinic last week my lung function was down one percent to 23% but the doctor was not overly concerned as she felt it was on its way back up after my inflammation. To be safe, I am going back in a month to make sure it is not declining any more.

- I also got a lecture at my CF clinic to go back on the hypotonic saline masks which I had stopped in the fall because I felt like they weren't doing anything. The doctor said "even if you aren't bringing anything up, the studies have shown that they still help." So back to two aerosol masks in the morning for me (it means I have to get up earlier on days when I have somewhere to be in the morning which may be why I got lazy with them in the first place).

- Jan was pretty quiet by way of visitors (except when Mom and Dad were down the first week of the month). It was actually a nice stretch where I managed to get caught up on a lot of TV and read a lot of books. My sister is here for a week this month and Isaiah's family is here at the end of the month. Then Mom and Dad return for the NB March break so back to the museums and out for meals we will go! Sushi will be eaten!

- The weather has warmed up slightly which is excellent for my lungs. It has gone from bitterly windy cold to slightly cold with less wind. This is much more pleasant for me and my poor lungs so hopefully our crazy cold days are over.

- I still have dreams where I get or miss the call. I have come to accept that they are a way for me to prepare myself for the emotional ride that will be 'getting the call' and a way for me to subconsciously process everything that is happening. I don't think they will stop until long after the surgery ever happens. The dream the other night was most traumatic as I dreamt that the hospital was actually the Air Canada Center and people were playing basketball and my friend's boyfriend was the doctor. I kept screaming that he wasn't actually a doctor and it wasn't really a hospital but no one would listen to me. When the 'doctor' went to give me the anesthetic, I woke up in a panic. I'm not sure what my emotions were trying to process there.

That is all I can think of in terms of new information from the past two months. I'm not discouraged about the wait as there are quite a few people in physio who have been waiting for over a year. Still could have a ways to go yet!

Parking permit!

I finally got myself an accessible parking pass. I can now park wherever I want! Ok...probably not, but I can now park close to stuff. Yay! I avoided getting one for the longest time because I felt that once I got one than it would be my excuse to never walk anywhere. However, with the lack of parking in Toronto, that really isn't going to be a problem. Plus I figured I will for sure need one after my surgery and it is easier to get it now than when I'm walking around with a walker.

I've heard stories about other people with CF or other disabilities getting notes on their cars because some jackass thinks they are scamming the system because they don't look 'disabled'. I will not be pleased if that happens to me.

The right to park anywhere!

How am I doing?

How am I doing? That seems to be the question to ask these days. I honestly have no idea how to answer that question. I talked about this when I first started my blog and I am still confused.

I'm doing great! That is my typical response but I feel like when I say that, people could get the wrong impression of how I'm doing. Because 'doing great' to me, and 'doing great' for other people means two very different things. When I say that things are going well and that I'm doing great, it means that I am not in the hospital, not on extra antibiotics for an acute infection, and that I have enough energy to go to physio and maybe one or two extra activities during the week. It basically means that I am stable and have not had any sudden progress or decline in my health.

That would not be 'great' to most people but it is where I'm at at this point in my life. And I do feel great most days, I am reminded of this every time in physio when I compare myself to the other people who are waiting for a lung transplant.

I don't want to start ranting to everyone who asks but I really don't know how else to describe my situation.  I don't want to be sugarcoating it because obviously this isn't exactly my idea of awesome but on a day-to-day basis, I don't really know what else to say other than that I'm doing great.

Hot air balloon art.

I managed to keep up my 'art Monday' the past two weeks! I drew and then painted this picture of hot air balloons. Well I guess I coloured it as I used watercolour pencils. They are super fun, you colour the area and then go over it again with a wet paintbrush and voila! Art! The downside is that I find it harder to blend the colours but I think I just need more practice. It is from a picture from when Mom, Amy, and I went for for a sunrise hot air balloon ride in the Cappadocia area of Turkey. This view is from the ground while the sun rose and we were waiting for our balloon to fill. About 75 balloons went up the morning we were there. It was quite the sight.

Balloons! The landscape in that area is amazing.

Snowman dishcloth.

Probably the only snowman I'll make this winter. The snow in downtown Toronto doesn't stay clean very long so any snowman around here would be quite yellow and brown thanks to everyones dogs. It's actually pretty gross and despite the condo building's clever posters, the owners don't seem to motivated to walk to the park across the street. Smarten up dog owners! I don't want to walk in pee just because you find it cold out. Should have thought about that before you bought a dog. Or a condo. I wonder if it was just as bad in the fall but I just wouldn't have notice it then because there was no snow. Gross.

It will add some fun to doing dishes!

Everyone is ignoring the sign. Maybe it needs a few more pictures on it. 

Books books books!

The books made it to Halifax and Petty. Yay!!

Aaaand all the extras have sold. Already. Before they could actually be removed from the box. The support I'm getting is outstanding!

I will be doing another order this week so if you missed the first order, let me know and I'll make sure a copy is held for you. Don't miss your chance to get your hands on what all the cool kids will be reading this winter!

Here is another poster from my ad campaign!

E-version is actually available now! Just click on the 'I wrote a book!' tab to download your copy today!

Pulse Oximeter.

My pulse oximeter arrived today! Now I won't have to fight people at the gym for the ones there. Not that I really fought with people...more like grabbed a  oximeter and tried to prevent anyone else from using it while I was there. Now I'll be in with the cool kids who have them hanging around their necks. I really got it so I can check my oxygen levels at home. I had no way of knowing before as I don't get dizzy or feel lightheaded when my levels drop. So most likely, I'll end up wearing the oxygen more often (if not all the time) as I'll be able to actually tell when  my levels are low.

It works! I'll compare it to the expensive ones at the gym tomorrow to see if it's right.

I enjoy punny cards.

It was Isaiah and I's anniversary on the weekend. According to the internet, it was our anniversary of wool and copper so I gave him a card and 7 pennies and he heated up some leftovers and made dessert. I think it is the biggest celebration we've ever had (we aren't big on anniversaries).

Hehehehe

I am not my disability.

On Friday, one of the physio assistants called me 'a cf'. Not a 'cf-er' (which I've heard a plethora of times), a cf. She looked at me standing in the doorway, turned to her colleague and said "we have a cf at the door."

Argh! How many times does it have to be said? "I AM NOT MY DISEASE!!"

(No, I didn't say anything to her because I have to still see this person three times a week and rely on her for stuff like 'getting my weights' and 'cleaning the room.' Let's save the 'people being uncomfortable speaking up to professionals on whom they rely' conversation for later.)

I know that she probably didn't mean to dehumanize me with the comment. She was probably just commenting on the fact that I have CF which meant that she needed to figure out which side of the room I should be on and whether or not she will have to clean that side before I enter the room. However, at that moment, being called 'a cf' reduced my identity and person-hood to my disease. Nothing else about me mattered.  

I know there are people out there who use the word 'cystic' or 'cf-er' to describe themselves in certain situations (note the 'er' attached to the 'cf', if nothing else, at least there is a 'er' to attach the disease too). That is a personal decision and one that each person get to decide. Not you. You do not have the right to define me by my disease. I am a person first, a disability last. I do not like being referred to as my disease any more than you would enjoy being called a 'acner' or 'dandruffer'.

When we call each other by a medical label, we reduce that person to their disease. We are saying that we see that person as first having a disease or illness and second as being a person. We reduce each other to a condition on which we then use to base all of our future interactions. Calling someone 'a cf' or 'epileptic' or 'autistic', reduces that person to one characteristic about their lives over which they had no control. Why would anyone have the nerve to assume that the other person wants to be defined by a medical diagnosis?

Look, I understand that we, as humans, are lazy when we talk and it is faster to say 'cf-er' or 'disabled person' over 'person with cf' or 'person with a disability' therefore the former seems to be the go-to option. But when doing so makes a person feel dehumanized and as though they are being reduced to their disease, we have to get our butts in gear and start treating and calling each other people first and foremost.

Language is important. Let's be more aware of how we use it.