Happy early Canada Day!!

I realize that in my last post I said that I was back on schedule but that isn't entirely true as I'm off tomorrow to spend a few days lounging by my cousins pool.


As I will not be taking my computer with me, I thought I should wish everyone a Happy Canada Day before the day has passed. Happy Canada Day all!!

I hope everyone has a pleasant day off relaxing with friends or family and that it isn't quite as hot as today. It was 28 here today with crazy humidity, I fear that this temperature is my new summer reality. I thought I was getting heat stroke while watching the World Pride Parade. The best floats were the ones spraying water at the crowd as it momentarily cooled everyone down.

There were thunderstorms this evening which has slightly lowered the temperature. Hopefully the humidity will stay low for my pool plans tomorrow as I would rather be able to breath while I lay outside and read the latest JK Rowling book.

One benefit of the humidity/thunderstorms is pretty rainbows out our window.

Pics of June

Well, the revolving door of guests has stopped, the pile of laundry has been somewhat reduced, and I've spent three days in recovery sleep mode, so I guess that means it's time to get back to my grueling schedule of reading books and hanging out on the terrace.

Here are some of the exciting things I did this month around Toronto instead of blogging. I think I've checked almost everything off my 'touristy things to do in Toronto' list. The only things left are a CFL game (which doesn't start until July) and Niagara Falls (which is too far out of the city for my comfort level and will have to wait until post-transplant).

I found a colourful sidewalk, it was not quite as exciting as I had hoped.

Casa Loma being so very castle-y and loma-y. 

The X-men must have all been on summer vacation.

Look at the space between the vases. Something to try at my next pottery class. 

I fought a lego wizard.

Alison and I went to a drop in pottery class and I managed to make a vase! The wheel was my friend that night.

Art galley!

Some more animals from the Lion Safari.

I found what has to be the worlds oldest crokinole board at the Black Creek Pioneer Village.

Cart 2.0

I got myself a new cart! Well, technically, Isaiah was the one who actually went to Chinatown for the cart. He opted for the version with the fancy wheels which will hopefully survive the curbs for longer.

I broke it in at the African Wildlife Safari on Monday and it worked great. Although really, most of the time at the Safari is spent in a bus so it's not as though there was much maneuvering over obstacles. It was baby season at the park and they were all so adorable. Especially the baby baboons.

The fancy three-wheel option.

 

Cooking: More Crackers, Almond Crackers.

I made more crackers and they turned out just as well as last time. I cooked them all on stoneware and it seems to be the trick in having them crisp evenly.

I made a third of the original recipe and for this batch, I added about 1/4 cup of almonds as I can always use more calories and protein in my food. Plus they are delicious. I ground the almonds with the magic bullet and added them to the dry ingredients (the flour and salt). I think I like this batch better than my first one. I bet almond spinach would be good as well. I wonder what other flavor combinations I could try. Any ideas?

The magic bullet is surprisingly good at grinding up food.

A sample of the end result that turned into my lunch. Yum!

Goodbye cart

Last week of touring around Toronto was too much for the little cart that I bought to haul around my oxygen. Apparently thumping repeatedly over the curb was too much for the wheel to handle. It started to crack two weeks ago but I could always shove the tire back on the plastic bit but last week it gave up the fight for good. Isaiah tried gluing it together but that only lasted for a few hours. Turns out a 15$ cart from Chinatown can only handle so much abuse.

I guess it's back to carrying oxygen in the backpack until I get a replacement.

As a random person in the elevator observed, 'looks like I have a wheel problem.'

Happy First Day of Summer!

Happy Solstice all! And Happy Wedding Day Emma and Joe!! Their wedding was the one that I've been not wanting to miss. The one that I've spent evenings cutting out paper triangles and hearts for. The one that made me wonder if it was worth missing out on life events to wait for a transplant that may or may not happen soon.


I really contemplated going back to NS for the weekend and putting myself on hold on the list. Obviously I decided not to as I'm still here in Toronto, getting text updates, and really wishing I was there. Going back to NS for the weekend, was a nice idea but I think I would always wonder if I was giving up my one shot at the perfect set of lungs. Emma and I talked about it and she didn't want to be the reason I missed out on a lung transplant. It guess if I don't get the call this weekend, then I could have realistically gone. Unless my not going causes some fluke chain reaction, which results in something happening that would not have otherwise. I know, I know, I'm over thinking my decisions again. Arghh!! Where is the manual for the big decisions in life?  

On the plus side of not attending one of my best friends' wedding, more visitors arrive today!

Oxygen.

Since my lung function has gone up and my oxygen levels have improved slightly, I thought after my doctor appointment that would mean I could start wearing my oxygen a bit less like I was before my levels started dropping. I still wore the oxygen almost all the time but would leave it home if I was going to a play or out to eat. I was hoping that I could get away with not wearing it while I was being inactive to give my very dry nose a bit of a break.


However, it turns out that my lungs have grown accustomed to the oxygen and lately I feel more short of breath when I'm not wearing the oxygen even if my levels are staying above 90. I don't always feel an immediate effect but I definitely do if I'm walking around or it is slightly humid outside.

I realize that before when I wasn't wearing the oxygen, I was probably still as short of breath but I was so use to it that I didn't notice. Stupid lungs and their getting accustomed to not being stressed all the time. My nose was hoping for a break!

Dancing Sheds

Happy Birthday Amy!! Thanks for being the best sister ever.

Here is a drawing I made with her in mind as she loves the artist from Young Studios that paints funky sheds and houses from Newfoundland. I coloured it in with the 5 pencil crayons that I own.

Lighthouse Painting

Here is a lighthouse pic I did awhile ago. I thought I would share it before I went out for sushi tonight. Yum!

Pottery Class: The end.

I picked up my final pottery pieces! I really like how the colours turned out in all of them. I can really see an improved difference between my mug from the first week and this mug. This one is actual level and doesn't have any thumb prints. Oops! I wasn't expecting the plate to keep the 'paint splatter' look post-kiln but it is slowly growing on me.  

I repainted my vase at the drop in class so hopefully it will brighten up a bit. Now to try and find room for everything!

Walking Test

I finally did my walking test yesterday, and I've improved from March. Yay! My distance was up from 530m to 585m. I don't really know what that means compared to an average person (I can't find that study online) but I'm just happy it improved. My oxygen levels didn't crash out quite as bad either although they still crashed pretty far. I listened to some pumping music so maybe that helped although most likely it's the new puffer and higher oxygen flow.

The woman who did her test before me, was doing all her pre-transplant testing and was significantly lower than she had been a few weeks ago. So they were making her return in a hour to repeat the test. That poor woman! I found it hard to do my regular physio stuff after the walk test, I can't imagine having to do two in the span of an hour. Her legs must be aching today.

Waiting Game: 8 Month Update

Well, I've officially reached the average wait time. As usual, here is a bit of an update/recap on what's been happening over the past month. 

- Since I never seemed to really recover from the horrible-never-ending-May infection, I am staying at a 4L oxygen flow during physio. However, I have managed to increased everything back to my earlier levels without crashing out my oxygen levels which is good news. I've also managed to increase my leg weights to 10lb, I reached my personal leg weight goal!

The 10lb weight is so big that it needs two velcro straps.

- I started a new puffer two weeks ago after a doctors appointment at St. Mikes and returned today to make sure that it was working. And it is! My lung function has skyrocketed up to 28%. 28 is so incredible that I didn't believe the nurse at first. It's almost last year's levels. Yay steroids!!! Steroids cure everything (a good lesson for the kids out there)! The doctor was very pleased and told me not to change anything. The other good news is that I don't have to return for another 6 weeks. I was worried that bi-weekly visits were going to become a regular thing.

- I thought I had gotten super chill about getting calls from unknown and blocked numbers but last night at the Jays game (which was fantastic, btw), I had a missed call from a 416 number and I still had a few second panic. Even though the caller didn't leave a message and no one called call Isaiah's phone or my pager, I still thought for a minute that it could be the hospital. It's amazing how fast the rational part of the brain gets overridden by blind panic.

Go Blue Jays!

- We have so many visitors this month so I may be a bit slacking on the blogging front, I'll try my best but I may be off visiting new museums or restaurants instead.


The past few weeks, I've come to the realization that I am absolutely ready for a transplant. I know I said I was absolutely ready in Feb when it was cold and I didn't want to go outside, but now I actually feel like I've reached a deeper acceptance and preparedness (is that a word?) and not just because I don't want to go outside. I thought I was ready when I agreed to be on the list but I wasn't. If I had gotten the call during the first few months, I probably would have had a panic attack and tried to back out. But now, I'm ready.

I think that seeing so many people at physio go through the process helped me reach this point. It has given me a realistic expectation for the post-transplant world and the challenges that are on that side and I feel prepared for them. Being able to listen (aka creep on other people's conversations) to everyones post-transplant complaints has taken out a lot of the unknown so of course it has become less scary. Turns out I just needed a little more education. It has also helped that I've seen people go from using a walker while on oxygen, to strutting around the room talking about how awesome they feel.

The average wait is 8 months and today is my 8 month mark, so anytime now would be good. Average is more than fine with me. I'm not looking to break any 'longest wait' records. I want to strut too.

Cooking: Strawberry Rhubarb Coffee Cake and Crackers

Friday night I decided it was time I put together the Strawberry Rhubarb Coffee Cake I had been craving. I had made the strawberry/rhubarb sauce on Wednesday so I had to make the cake before the sauce went missing into a bowl of yogurt or icecream.

Since I am very much my mother's daughter, I figured since the oven was on, I should also make a cracker recipe that I've been meaning to try. Never waste a hot oven! I eat a lot of crackers for lunch and snacks so it would be nice if I could make them instead of giving more of my money to Kraft.

I tried a cracker recipe a few years ago but they didn't quite crisp up the way I wanted. This recipe worked much better. I added a bit of spinach and cheese because I can't help myself in trying to make a recipe more exciting. Why have regular crackers, when you can have Spinach Cheese crackers? According to Isaiah, it's because you want to see if the recipe is going to work before starting to experiment with it. Meh.

I halved the following recipe (from Grazing cookbook by Julie Van Rosendaal):

1 1/2 cups flour
1 1/2 cups whole wheat flour
1/2 tsp salt
1/4 cup canola oil (I used veg oil and ended up using a bit extra as the dough wouldn't form)
1 cup water
Coarse salt, for sprinkling
(I added about a 1/4 cup cooked chopped spinach and some grated Parmesan cheese)

After mixing dough, let it sit for about 15 min before rolling out as thin as possible and sprinkling with salt. Cut into squares before baking but don't bother to separate them. Prick each cracker with a fork a few times. Bake at 350 for 15-20 min (I did 20-25 min)

I baked them on a regular cookie sheet and a stoneware one, the stoneware did a better job getting them cooked evenly and crispy. 

Half of the dough waiting to be rolled out.

We use a wine bottle as our rolling pin. It works pretty well. I think all my clay rolling has helped me get the dough even. Although I think a pasta roller would really work the best.

Pre-sliced ready to be baked.

One plate full of crackers. Yum!

The coffee cake turned out delicious as well.

Friday

I've been slacking with my posting! We have some visitors in the Toronto area for the next few days which is most exciting. The next few days are going to be filled with board games and delicious food. Yay!

On Friday I had a bunch of appointments at the Toronto General which meant getting up at 6 am. Urg. I almost fell asleep in the CT scanner. I probably would have if it weren't for the annoying voice saying 'breath in...hold it....relax....' during the entire scan. I hate that 'hold it' part, my little lungs can't handle it.

The 'hold your breath' part was worse at my Echocardio appointment though where the women wanted me to hold it for an impossibly long time. After a few seconds, I just gave up and started breathing anyway or went into a wild coughing fit. I'm sure it really helped her scan the stress of my heart. Or whatever it is that a Echo testing. I think they have unrealistic expectations. About halfway through, the woman just said 'hold it if you can but breath if you have too.' Thank you for that advice. I really wasn't about to make myself pass out for a routine Echo test (although I'm pretty sure I wouldn't be able to do that if I tried).

After my appointment fun, I had regular physio where I was the third person with CF to show up for the 1030 time slot. This caused some panic with the physiotherapists and it meant that I got to exercise all by myself in a special gym on the 7th floor. It had all the OT-type rehab equipment so I think it's the rehab gym for the transplant inpatients. Above the practice toilet was a giant sign 'Do NOT Use.' I wonder if they hung that sign when they first installed the toilet or if it was put up after a smelly incident. 

Talking to children about death.

I hope everyone in Moncton is safe and my heart goes out to those who lost their lives in this senseless tragedy.

I saw on Twitter that many parents were choosing not to tell their children what was happening. That is their right as a parent, and as I non-parent I'm not judging, but it is important to realize that children know when their parents are afraid and it can be worse when they don't know why, as that is when imaginations run wild.

After the Connecticut shooting last year, my favourite mortician of the 'Ask a Mortician' series, posted this video on talking to children about death and tragedies. I think everyone should watch it, not just those with small children, and that it might help in processing what happened.

To antibiotic or not to antibiotic?

It's been a week since my doctor appointment at St. Mikes so I'm suppose to now decide if the puffer is working or if I should start the antibiotics. Someone tell me if the puffer is working or not!

The argument pro-puffer would be that my coughing at night has decreased significantly, that I'm coughing less overall during the day, and that my energy has returned to mostly-normal rates.

The argument pro-antibiotics would be that I'm still quite congested in the mornings (but my saline mask helps), I'm still coughing up more sputum while exercising, and that my oxygen levels haven't increased back to their pre-cold state.

I would much rather not take the anitbiotics as the dosage is crazy high and I know they will immediately wipe out my energy and appetite. However, if they will increase my lung function and help in the long run, it would be worth it. Argh! Why did they leave this decision up to me? Don't they know how horrible I am with subjective 'reflect on how you're feeling' decisions?

I think I'll give it another two days with the puffer and see if anything changes since I really don't want the antibiotic side-effects. Or maybe I'll give it another week until my clinic appointment and they can tell me if I need the antibiotics or not.

It's times like these when I think how great it would be to get 'the call' right this second so I don't have to make a decision.

Lettuce

Look how the lettuce is growing, Yumm! I think it's time to have a small salad. The weather here makes growing things so easy. Must stay away from garden centers...