Monday, 31 March 2014

A few transplant stats.

A lot of people tend to ask me where I am on the transplant list. I can't really answer that since it isn't a 'first come, first serve' system so there is no way of determining a specific ranking. There are two groups 'group 1 and 2' which puts people in high and low priority groups. So the lungs would go to someone who matched in group 1 before going to a match in group 2. Or maybe it's the other way around. I honestly forget at this point. I do know that I am considered in the 'low priority' group but if I start to decline then I will be switched to up to group 1....or down to group 2 (I easily forget non-essential medical information).

While I have no idea where I am on the list, I can give you some information about how many people are waiting and such.

As of March 31, 2014 in Ontario:

- There are 79 people waiting for a lung transplant. 44 Women, 35 Men.

- The blood type breakdown is: type A (my group!) - 29, type AB - 0, Type B-10, Type O- 40.

- Two people are waiting for heart + lung transplants. 1 Woman, 1 Man

-  A total of 1534 people are waiting for various types of organ transplants.

- The majority of people waiting are in the 51-60 age group with 473 people. The second largest group is 413 people. There are 72 people in my age bracket (18-30) and 31 people aged 0-17.  
 
- Only 24% of Ontarians are registered donors. That is 2.84 million out of 11.74 million people.

- There have been 22 lung transplants from Jan 01-March 31.

-From April 1 - December 31st 2013 there were 101 lung transplants. 95 at the Toronto General Hospital, 6 at the Hospital for Sick Children.

I found all this information on the Trilliam Gift of Life Network  if you want to check it out yourself. They have the Ontario stats for every organ donation over the past 10 years.

Sunday, 30 March 2014

Jellyfish drawing.

I haven't done much over the weekend but I did manage to draw this jellyfish while watching a few Harry Potter movies. I've been playing around with pointillism-type drawing and I think it turned out really well, even though Isaiah claims that its tentacle things look weird. I think that is because the jellyfish is weird to start.

I hope everyone in the Maritimes is having a good stormy weekend! It was sunny and above freezing here!

Jellyfish at the aquarium!

Friday, 28 March 2014

Yay Times and Transcript!

The Times and Transcript did an article about me! And it was in today's paper. Eeek! Unfortunately the online copy of the paper is behind a paywall so I can't link to the article but the gist of it is that I have CF and I'm waiting for a lung transplant and that I wrote a book about my cycling trip during my free time. All stuff that you most likely already know if you're reading my blog.

The journalist who called me asked if I had any 'words of encouragement for younger people who have CF or anyone who has a disability.' I kind of froze and couldn't think of much on the spot but of course thought of a better answer a few hours later. If I had to answer that now it would be something like: "Don't let yourself or your life be defined by your disability. It is amazing what you're capable of when you ignore the perceived limits that come with your label. Take opportunities when they arise because you never know when you're going to get a second chance. Focus on the positive and when you're struggling, don't worry about the future and take everything just one day at a time." (that blurb just about covers all the wisdom I've accumulated over the last 27 years)

I love that a staged-book-reading selfie made it into the paper.

Support person ID has arrived!

Guess what came in the mail yesterday? My support person assistance card. Yay! And here I had doubts that the TTC would get everything processed and sent out in time to arrive before the deadline of March 30th. They made it by two days! I never should have doubted them.

No more answering questions from bus drivers! Yay to hassle free bus rides! 
ID pics are always attractive. This one highlights my ghost-like qualities.

Thursday, 27 March 2014

Giant fish painting

My 'Art Mondays' seem to be going by the wayside for the past few weeks as my physio time has been switched from 1030am to 1pm. Instead of doing arty things, I end up just sleeping in and by the time I get home from physio I seem to find other non-art things to do. So, art Tuesday or Thursday is becoming a thing instead.

On Tuesday,  I returned to the Chinese brush painting determined to try something a bit more detailed than a tiger or rabbit. I opted for the 'bird on a branch' picture and it went okay at first until it said to use thinner paint, meaning more water. Something between the way I was painting and the paper provided made everything looked blotchy and wasn't blending together. The leaves looked a very sickly and the bird had a crazy eye thing happening (I did not take a picture as I did not want to remember the experience). In the end, I got super frustrated and gave up. I will try it again on different paper.

After that, I painted a giant fish and it made me feel better.


Wednesday, 26 March 2014

Physio today.

They got a new piece of art in physio! It thankfully doesn't have any silly inspirational quotes and is just a nice picture of a lake. I meant to take a picture of it but clearly forgot after I was done everything. It's kind of sad what small things can make physio a bit more interesting these days.

Another thing that made physio go by quickly today was the fact that I'm totally addicted to this new game on my phone. It's called '2048' and it makes walking on the treadmill much less boring. The point is to match the numbers together to make a 2048 block which sounds easy but it's not. It's addicting because it's just a basic game that doesn't try to sell me anything or have any levels to unlock. More games should be like this. 

Anyone have any other game suggestions that would be good for playing while exercising?

Why can't I stop playing? Haha.

Tuesday, 25 March 2014

Diabetes survey

You may remember a few weeks ago I mentioned that I agreed to be part of a study looking at CF-related diabetes and exercise. Today, I got the call about it and it is not going to take too much of my time. In fact, the women did the 10 minute survey with me and is going to mail me the second part about my diabetes treatment for me to fill out. I'm not sure how much help I'm going to be to their study as I don't treat my diabetes and rarely check my sugars (before you freak out at me for not treating my diabetes, my blood sugars are in the normal range. They were high when I did a glucose tolerance test so they officially diagnosed me with diabetes but insulin didn't work very well if you remember from last June.).

Either way, I guess I did my small part for looking at the relationship between exercise and diabetes. I would expect the outcome would be that regular exercise helps regulate blood sugars although since they only asked me about a week of activity, I can't imagine that their results will prove very much. I was secretly hoping that I was going to get a 20$ Starbucks gift card for my time but the women who called didn't seem ready to offer me one. Maybe that only happens if you are being given trial medication. Boo!

Sunday, 23 March 2014

Sunset pic

As you probably noticed, I really like sunsets. I like taking pictures of them and turns out I enjoy painting them as well.

Sunset over Paros from the island of Naxos in Greece.


Saturday, 22 March 2014

A post-antibiotic world?

Last night, as I was listening to my podcasts to help my transition to sleepland, I listened to the most depressing segment that not only didn't help me sleep, it kept me awake for several hours afterward. Naturally, I thought I should share it with everyone else.

I've been pretty good at avoiding the depressing podcasts (usually by ignoring all the ones that say 'war' in the title). Unfortunately, this one bypassed my radar by being on the CBC science show, Quirks and Quarks. Usually that show puts me to sleep right away by talking about the latest dinosaur discovery or the atmosphere of Venus' moon. However, last night the first part was dedicated to how antibiotics are soon going to be obsolete (listen here). Eek! I've read a few articles speculating about the end of antibiotics but had never heard/read anything about it that went into the actual details.

If you don't have time to listen to the discussion, they basically went over how we have overused antibiotics to the point where infections will soon be untreatable. The antibiotic research has not been able to keep up to the evolution of the viruses. This is partly because antibiotics are not a big money maker for the pharma companies so they don't invest as much into the research. It doesn't help that there have been no major new antibiotic strains found since the 1980's.

Basically we will soon be overrun with 'superbugs' that we can not treat because they have evolved past the point of our best research. There are already some of these already in existence (like C.Diff and MRSA, you probably heard about them because shows like Marketplace love to show that they are rampant in hotels) and more are going to develop as we continue to overuse antibiotics.

Before you start building your isolation chamber, there is some hope with new research. Outside of North America, there are some treatments being used like 'bacteriophage' that kills bacteria cells specifically and is unable to attack human cells. Unfortunately, the treatment is only done in Eastern Europe/Russia and wouldn't be close to passing our drug administrative tests. There is also research being done to develop antibiotics that would attack a specific virus which would leave good stuff in the body so the person would not be as immuno-compromised to other viruses. However, it is also years away from being approved by any drug board so there is nothing really in the interim.


They ended the segment by saying that not is all lost but people have to stop taking so many antibiotics and if there ends up being a new method of fighting infections, we have to not overuse it like we did with antibiotics.

My entire life, I was given antibiotics whenever I got sick to prevent the infection getting into my lungs. I was definitely part of the 'over antibiotic-ed crowd' and continue to take a crazy amount of antibiotics to try to keep my lungs to stay healthy enough until the transplant. It's terrifying to think of what would happen if antibiotics were no longer effective. No more transplants! No more hip replacements! Minor surgeries could become life threatening if infections could no longer be treated. Gah! Transplants are just starting to become commonplace and it's terrifying to think that it could all be destroyed by the fact that we are running out of effective antibiotics.

If you need me, I'll be hiding in my plastic bubble.

Friday, 21 March 2014

More Books Available!

Dear amazing people of the blogosphere and beyond, 

You're all fantastic. Thank you for buying my book and harassing your friends to do the same.

Because of you, I've sold almost 500 copies which is amazing considering most self-published books sell 100-150 copies. I can safely say that all my expectations have been blown out of the water. So thank you!! I think I have the best support system that has ever existed. 

*giant hug for all*

While I'm on the subject, books are now being sold at Mike's Bike Shop in Moncton, NB! There are still lots of copies available at Frenchy's and Scotiabank in Petitcodiac and my apartment in Toronto. There are also more books heading to Halifax on Friday for anyone still wanting a copy from there. Or just message me and I'll mail you one. Or get your e-copy online by clicking above on 'I wrote a book!' There's no excuse for you not to be reading the #1 bestseller of Scotiabank and Frenchy's. (Teeheehee)

But seriously, thank you all. I couldn't have done it without you.

Thursday, 20 March 2014

Spring is officially here!

Happy Spring! Even though I've declared it several times this month, spring is officially here. Yay! I'm just going to ignore the flurries outside.

I'm been feeling kind of blah the last few days. I'm not sure why as I don't feel like I'm getting sick and everything seemed fine at physio yesterday. I just feel unmotivated to do anything. Like I want to lay on the couch and watch mindless TV for the afternoon. So that is what I've been doing. I've been on a horrible sleep cycle the last week and I think maybe it has caught up with me. I have to get back on track!

To celebrate Spring, here is a piece I did last week of the tulips Mom bought at St. Jacobs. I used watercolour pencils so I'm not sure if I get to call it 'painting' since I coloured everything in and then used water and paintbrushes afterward. The flowers are on their last leg (I haven't had the heart to chuck them yet) so it is nice to remember when they didn't look as sickly.

Spring flowers!

Tuesday, 18 March 2014

Update on TTC support person program

I thought since I wrote a rant against the TTC, I should write a post when things are going well. I still have not received my 'Support Person' card but now that I am armed with a printout of the program information from their website, I feel more confident about using the honor system with the bus drivers.

On Friday, we had absolutely no problems. Both bus drivers just nodded when we got on and didn't seem confused about what we were talking about. On Monday, the first bus driver reminded me to get a card by the end of the month. He actually said "we got an email today saying you need the card by the end of the month." The TTC actually sent out information to their drivers. Yay! The second driver however seemed to have just skimmed the email as he asked me where my card was when I said that Isaiah was my support person. I replied that the paperwork was being processed and he let us on. So all in all, much improved than the last time. Everyone seems to be actually aware of the program. Yay!

Happy St. Patricks Day!

Happy St. Patrick's Day!! I hope everyone had a green day full of pots of gold and green beverages. We sadly didn't do anything in celebration, Isaiah went to the St. Patty's Day Parade yesterday but I opted to stay home and avoided standing in the cold for a few hours. I think it was the right decision as it sounded like I just missed a lot of people in green and one float.

When I went to physio this afternoon, things were a lot less rowdy around the university than I was expecting. Perhaps the students at U of T celebrated yesterday or maybe it's just because my path didn't take me past the student bars. Or maybe I just don't know how the rest of the country celebrates after spending so many years in Halifax watching people line up at the pubs at 7am.

Either way, I hope everyone had a great day and celebrated in their own way. May the luck of the Irish be with you! (I mean the good luck, not the bad potato-famine-English-ruling-type Irish luck)

Sunday, 16 March 2014

Don't die on me pager!

On Friday I was switching all my stuff from my backpack to my cart for physio when I noticed that the pager was dead. GAHHH!! It shouldn't be allowed to just die with no warning!! Who designed these things? Shouldn't it give a loud warning beep right before it dies or something?

I will admit, I have been pretty slack in my 'testing the pager every week' like the transplant manual suggested. As the pager lives at the bottom of my wheelie cart or backpack, I only really look at it a couple times a week when I am switching all of my stuff between bags or to my purse. I think since it's the third method of contacting me, I didn't worry about it since I figure I'll have my phone on me when the hospital calls that first. However, I did not anticipate the pager dying (although I'm not sure why I assumed the battery would live forever) so I seriously have to start checking it more often. I bought new batteries so I'm once again back in business!

Friday, 14 March 2014

Alternative therapies

Writing about cupping got me thinking about all the alternative therapies for CF that I've looked into over the years. I have phases where I look up what the alternative medicine world has to offer and to see if they have discovered a cure and forgot to tell people about it. I have yet to find one.

Yes, there are blogs out in the blogosphere about people treating their CF through oils and herbal supplements. There will always be one person on the Internet who says the latest thing has worked on them (not surprisingly, a lot of them are then willing to sell you the product). Reading their stories wants me to abandon all of my pharmaceutical medication just like them and start drinking salt or silver (yes people do this) or whatever it may be. That is, until I read that the person has a lung function of 80% (mine is 24%). So perhaps it does work for that person but I can't even remember when I had 80% lung function. Are the persons lungs at 80% because they drink the stuff or do they just happen to have a different type of CF that does not require as much medication?

CF can be so varied from person to person as the disease presents so differently in each individual. Some people get more lung issues, others more digestive issues, the lucky ones get hit with both. So if someones lungs are healthier to start off, often the less invasive treatments will be all that is required to maintain that level of health. To say that a treatment that helped someone with a lung function of 80% is going to help my poor 24% lungs would be absurd. And that is part of the problem with looking at these alternate therapies on the Internet. One case study is not going to sway me when the scientific studies have shown results that are not statistically significant. 

The problem with Internet research is that people are often very passionate when they find alternative method that works for them. I have yet to find a blog where the person said how much they loved their Symbicort puffer and how much it changed their life. However, there are quite a few blogs when people talk about how much Reiki treatments, Himalayan salt, colloidal silver, or an oil concoction increased their lung function by an almost unbelievable amount. I can't see anyone passionately blogging about their puffers (perhaps that will be a topic of mine next week) even though the majority of people with CF use them as a treatment. 

The Internet can be a great equalizer when trying to find information which is not always a good thing. People with an opinion about a topic can make a website that seems as credible as a medical researcher who is writing about the latest studies. There is so much information available that it is hard to decipher what is true in the depths of Google. I tend to skew on the side of being skeptical until I have talked to a health professional who can give me their opinion about the topic. They have the expertise and have talked to way more people than me to know about the latest therapies.
 
Before you start telling me all about how the evil pharma companies have control over everything, let me just say that I am not anti-alternative therapies. But I am also not anti-pharma companies either. Pharmaceuticals are the only reason I'm alive. I sit somewhere in the middle where I think that well researched medicine and treatments are absolutely necessary but that, of course, exploring other options can be beneficial. In the same way that drinking a lot of water, sleeping well, and eating non or low-processed food is beneficial. Helpful for overall health but not enough for me to abandon my puffers or powerful aerosol masks.

Thursday, 13 March 2014

Cupping


About a month ago, I got a set of suction cups for cupping my back. For those who don't know, cupping is when you place these cups on the muscle which creates a suction and helps loosen the muscle. That is the theory anyway. The old ones for Chinese medicine use glass cups with fire but my set uses plastic cups and a suction pump thing but I think it is better that I don't have to use fire. Knowing me, it would very dangerous, very quickly. You can learn more about it here. 

My massage therapist in Halifax used them for my back and I found they really helped along with the massage. Yes, they left me with giant circular bruises on my back but it was worth it. Since getting the cups, I've been watching youtube videos on how to best use them for my back since I don't have a massage therapist around and people make quite the claims about them. They have said that cupping will help with inflammation, increase circulation, get rid of stretch marks and scar tissue, and a host of other claims. I'm not sure about any of that but they do help with my back so that is all that matters to me.

My cupping set!
It has really good suction for being one of the the cheapest sets on Amazon.

Wednesday, 12 March 2014

Tiger painting.

More art from the Chinese brush painting book! It was suppose to be a sleek tiger but it turns out that my tiger needs a bit more exercise. I find the brushes a bit hard to use as the bristles kept falling out so maybe next time I will just use my regular paint brushes. I also think it might be easier to blend the colours with watercolour paper but I'm not sure. I'll have to experiment. The ink stone worked much better this time but that may have been because I wasn't trying to paint solid black. Or maybe it is because I used less water while trying to make the ink.  

Running tiger!

Tuesday, 11 March 2014

Waiting game: 5 month update

It has been 5 months since I was listed! I can't really believe it has been that long. Despite February dragging out a bit, it doesn't seem like it has been 5 months. It can only be a positive thing that the time doesn't feel like it is dragging on.

Here is my monthly update on life pre-transplant in Toronto (sorry for any repetition to those who read the blog regularly):

- Physio remains as boring as ever. I have progressed to 8 and 9 pound weights! My goal is to get up to 10lb leg weights but my legs seem to not be building muscle as fast as I would like them too. It probably has something to do with the fact that I only do ten lifts of each muscle three times a week. I seem to have plateaued on the treadmill and bike as if I push myself any further, my oxygen levels drop below 88% which is a no-no. So I seem to be stuck where I am for now which is okay. Some days the cardio part of the workout seems super easy and some days it is a struggle. I haven't been able to determine the variable that decides if it is going to be a easy or hard exercise day.

- I still haven't made any transplant BFFs at physio or elsewhere but I do have a small talk relationship with a few people which is nice. We always just talk about the weather or the traffic which is not very exciting but it is nice to actually talk to people. Last week, someone actually told me about someone else having a transplant last week and who is doing well so I feel somewhat in the loop! I have no idea how people get their information but everyone always seems to know the status of everyone who have recently had transplants. My Monday physio time has switched this month from 10:30am to 1:00pm so I will now have a new group of people with whom I can talk about with weather.

- The weather has been a huge struggle for me lately but that seems to be changing which is a relief. It feels great to be able to walk outside and not immediately start coughing or tense up. I'll hopefully now be able to relieve some of the tension from my shoulders and back. I know people just want it to be summer now but I will be happy if it stays around the 5 degree mark for the next month. I'm in no rush for it to be full on summer which I'm sure will present a whole new level of weather-related struggles with the crazy Toronto heat and humidity. I am so happy that the winter is pretty much over. I'm sure you are too as it means I will stop whining about the cold. 

- I had a bit of a head-cold last month but it didn't seem to move into my lungs and my lung function had returned to its new baseline at my last doctor appointment which is all good news. I think the lesson from it was to maybe not cram so much into family visits. Especially if it is February and super cold outside.

- During February, there were a few days where I really wanted the transplant to happen that day so I wouldn't have to deal with the cold and physio (not that the transplant is going to eliminate physio). It has been the first time where I've had that feeling and I don't know where it came from. It's not like I've been lonely as there has been no shortage of family around. Part of it was that I was feeling like the novelty of living in Toronto had worn off and I was ready for it to be over. I haven't felt that way in a week or so, so it may be related to the change in weather. I'm now starting to think of all the new fun things I can do in Toronto once it warms up (booked tickets for a Jays vs Red Sox game last night!) and all the fresh market food that will be available. I think the combination of not wanting to go outside because of the cold and being sick was bringing me down. Hopefully that is now behind me.

- I have started to wear my oxygen while sleeping some nights. I started doing it while I had my head cold to help me sleep and I find I cough less in the night when I'm wearing it. Although that could also be because I am feeling better. I'm not sure but I continue to use it at night because my oxygen levels probably do drop low while I'm sleeping (they tested my night-time oxygen levels a year ago when I was hospitalized and they were a bit low but not low enough to require oxygen. However, I feel like it has probably changed over the past year). The only problem with wearing it at night is that sometimes I wake up having managed to wrap myself around in the cord. So now I have a fear that I'm going to strangle myself in my sleep. Although it would be a fairly ironic way to die, I would rather not any time soon.

- I realize I have fully developed a need to have my phone beside me at all times. This was especially evident last week when I somehow managed to forget it when we went to the art gallery. I didn't completely freak out but I felt like I was missing something the entire evening. I had my pager on me so I knew rationally that the hospital could still contact me if a set of lungs arrived. I still spent the entire evening subconsciously feeling my jacket pocket for my phone. Pre-listing, I always made a point to not take my phone to work or when I was going out with people so I wouldn't feel dependent on it. I guess I could take my pager everywhere but for some reason, I don't have full confidence in its abilities. Post-transplant I will have to try and break myself of my phone addiction.

That is all I can think of for now! We have a bit of a break now company-wise until the end of April (unless someone else decides to visit) but I don't think I will have much time to sit around and get bored. The wait continues!

Monday, 10 March 2014

Response from the TTC

I got a response from the TTC! And it isn't exactly a form-letter response which is fantastic.

---------

Dear Ms. Watson:

This is to thank you and acknowledge receipt of your correspondence dated February 26th,2014 regarding the incident with one of our operators on the 509 Harbourfront route on the same day.

I fully appreciate your feelings and can understand the frustration and apprehension that can be caused when situations such as the one you experience occur.  In light of your concerns, I have forwarded a report to the Divisional Management and requested that the details of the Support Person Assistance Program be communicated to the operators.

The TTC is committed to improving our customer’s experience, service reliability, customer communication and customer service. As such we value our customer’s feedback and hope to move in a direction of improvement.

We apologize for any inconvenience or anxiety that may have been caused and thank you for allowing me the opportunity to respond.

Sincerely,
Rishu Chadha        
Senior Customer Service Representative

--------

I feel like that is about all I can expect from the TTC and hopefully things will go more smoothly in the future. I got the physiotherapist to fill out the paperwork on Friday (they had never heard of the program but were very excited to tell people about it).

After physio today, I took the subway out to the suburbs of Toronto (everywhere outside of the downtown core is 'suburbs of Toronto' to me) to drop off my form to the customer service office. I was told to expect it to take 5-6 weeks to get processed but that it should also be done before March 30th so it will be anyone's guess as to how long it will actually take.

I asked the woman at the office if the bus drivers were getting any information about the support person program. She responded that everyone should have gone to education sessions about the program but they have gotten complaints about the drivers not knowing about the program (I guess I'm not the only one) so they will be sending out more information. She said it should get better once everyone has a card and for the interim she printed off the information from their website for me to show the drivers so I'm all set for the next time Isaiah goes to physio with me!

Sunday, 9 March 2014

A newfound love of apple fritters.

The last few days have been simply gorgeous. It is finally nice enough to be able to breath outside without coughing. Or to enjoy just standing in the sun. Spring is here!

On Friday, Mom and I returned to the pottery drop-in class to paint the bowls that Amy and I made a few weeks ago. Mine was a lot smaller than the one I remembered making. Probably the excitement of 'actually making something that didn't immediately fall apart' inflated how big I remembered it to be. We spent the two hours painting the bowls and I can pick them up in a week after they go through the kiln for a second time.
My bowl!
Amy's bowl!
I went with Raspberry and Pea Green colours. They will look very different post-kiln.
Mom opted for Fire-truck Engine Red, Lemon Yellow, and Lime Green stripes. The colours will be much more vibrant after the kiln.

Saturday, we went for a drive to St. Jacob's. It was a fantastic day for walking around the market. They had a horrible fire last year but everything is still going strong. They put up a giant dome-like building which was full of vendors and super busy. I have no idea what it was like before the fire but it looked like everyone was doing well. The day filled my longing for a market experience for a little awhile. There is only so much pushing through crowds and stalking out limited seating one can take in a day. If it was that busy in March, I can't imagine how crazy it is in the summer. Although, it probably didn't help that we went on the nicest day all winter which also happened to be the Saturday of March Break. The highlight of the day was definitely the apple fritters. Freshly cut apples, battered, deep-fried, and rolled in cinnamon and sugar. Mmmmm. I may have to go every week for some. I wonder if they deliver.

Fresh Samosas. Mmmm.  
Can't beat deep-fried apple slices and sugar. I barely had time to take the picture before they were gone.
My new favourite company.

Thursday, 6 March 2014

The Watson family continues the search for Jian.

I think I forgot to mention but my parents are here for NB March break! Yay! Isaiah's family was here for a quick visit on the weekend so there has been no shortage of family around. Today we went to see the final debate of Canada Reads! Everyone seemed okay with me dragging them to the CBC building this morning even though no one else had read any of the books (I'm still finishing up The Orenda) or have been following the debates this week. It was a fantastic way to spend a morning and I totally fangirled over Stephen Lewis and Jian.
After the show, we explored more of the CBC building and then went for lunch to have some delicious sushi. Mmmmm.

Stephen Lewis! (Me screaming in the back row!). Jian is hiding behind the camera.
There he is! The lighting was not conducive for audience members taking pictures.
Dad tried to get HNIC to hire him to talk about hockey when they can no longer afford Don Cherry.
Mom was more interested in finding the tickle trunk!
And looking for Rusty and Jerome. They were not home.
Neither were Casey and Finnegan.
No one is home! Maybe they will let me live in the tree. (I actually took this picture two weeks ago when we were at the CBC building for the Canada-US gold medal hockey game).

Wednesday, 5 March 2014

6-min walk test is complete!

I finally did my walk test today! (Urg!!!) The first time I did the test about a year ago, I thought 'oh this is kind of fun, I get to push myself and see how fast I can really walk'. Now all the fun is gone and I no longer care about seeing how fast I can walk in 6 minutes. They have it set up in a fairly busy hallway too so it's like an obstacle course where you have to weave between all the nurses and doctors strolling down the hall while trying not to run over their toes with the oxygen cart. It is not as fun as it sounds. I feel like I lose significant time turning around at each end of the hallway but I can't imagine that I am alone in having that problem.

The one good thing about finally having the test done is that it means it is over for another three months. The results were fine, my oxygen levels still drop off faster then I would like but my distance was still about the same so at least my legs aren't losing strength. I was about to say that I'm not losing endurance but I don't think that a 6-min walk test is a good reflection of endurance. Basically, everything was about the same but slightly worse than three months ago. The physiotherapist didn't seem overly concerned about it so nothing is going to change in my program.

I was late getting to physio as I forgot my sneakers and had to drive back to get them (thankfully it happened on the one day I drove up to physio). Because I was so late and then they finally decided I would do my walk test, I ran out of time for the treadmill. I was obviously heartbroken about this. To make up for it, we spent the evening walking around the art gallery. I'm sure it is about the same thing.

Tuesday, 4 March 2014

Doctor appointments.

It seems that the weather is not cooperating with my declaration of it finally being spring as it is still freezing cold out. Maybe next week will be a bit better.

I had a doctor appointment at the CF clinic today. It was not very exciting. They took some blood and I agreed to be part of a study looking at diabetes, CF, and exercise. They claim that I gained 2 kg in the past month but I think they are wrong.  There is no way I gained that much weight in one month. I think it was different because they used a different scale than they have for my past visits. I also think it is wrong because I according to our bathroom scale, I have not gained 2 kg. I told them not to be too disappointed when next month I lose about 2kg but they didn't listen to me!

I also had a resident doctor who knew nothing about CF or the transplant process. I understand that people need to learn but can they do it with the other patients? His top three ridiculous questions of the day were: "Did I know when to expect the transplant?" "Was I working?" and "Is there a CF clinic in the Maritimes?" I understand he is just learning but surely the other patients in the morning would have given him some idea of how the transplant process works? Or maybe he should have read about it before attending a CF clinic? Or maybe he should have looked at my chart for 10 seconds before asking me all the silly questions. Most of my frustration was because it was 2pm and I had been there since 11am and I really just wanted to talk to the doctor and go get some lunch.

It was all good news though! Well, 'good' might be a stretch, it was all the same expected news. It seems that my head cold was just a head cold as I had thought as my lung function remains steady with fev's around 0.79 or 24% (still not very awesome). So I basically have to just keep doing what I'm doing and I see them again next month.

I did learn that a random side effect of the transplant medication is that Vit A and E absorption tends to increase so peoples' levels super increase for an unknown reason. One less pill I will have to take! Ignoring all the anti-rejection meds I'll be on, of course.

Monday, 3 March 2014

Art Mondays!

For Christmas/birthday, I received 'Chinese Brush Paintings' kit. It has paints, stiff hair and soft hair paint brushes, ink stone, paper, and instruction book. A few weeks ago, I decided I was ready to tackle the kit. The book says that the idea of Chinese Brush painting is minimalism with a lot of white space. It also involves nature scenes which I enjoy painting so excellent choice!

The warm up exercises involved painting fish and bamboo and practice with how to use the brushes. I found the ink stone is really hard to use. The idea is to add water to the ink stone and mix the water into it to make ink. It is easy in theory but for the rabbit I painted, it was really hard to get it to be a solid black colour. I think it all just takes practice.
My practice fish!
Ink block!
Ink made!

The instructions are definitely confident in the painter's abilities as they go 'Step 1: draw this picture, Step 2+3: Add minor details, Step 4: Do the rest of it!'. 

I painted a rabbit from the books! But he ended up being too big to add the second carrot that was suppose to be on the ground. So a week later, I painted a new version of the rabbit.

I gave up on the ink well at the end and just used black paint as I couldn't get the ink to become solid black.
Rabbit #2. A bit less intimidating with room for the second carrot!

Saturday, 1 March 2014

Happy March!

Happy March!

This means it's spring right? Right!?! It's going to warm up now? I know everyone is complaining about how they are ready for winter to be over and I concur whole-heartedly! (Everyone except my mother who will happily ski until the last snow pile has melted)

Bring on temperatures higher than 0 degrees! A few day ago, I read that this winter has been the coldest in Toronto in 15 years but today I read it was the coldest Toronto winter in 20 years. Does this mean that the bitter cold of the past few days bumped it from 15 to 20 years or that the reporters are just making stuff up at this point? Either way, it has been way colder than I expected a Toronto winter to be and I am ready for some weather that will not make my lungs to seize up and cause long coughing fits.

So yay for spring! I declare that winter is over!