Sick.

I'm sick. Booooooo! And also aarrggggghhhhhuh;gun ehr;gjn;fjg. That is how I feel right now.
At least we now know why my lung function was down last week!

I skipped physio this morning and pottery class this evening. I though that laying on the couch watching television was the best activity for my overall health. It sucks being a responsible adult and having to put health before other things.

Isaiah treked to St. Mike's to pick up my antibiotics which I have thankfully started. It took forever for me to get a hold of anyone at the CF clinic there though. I left a message and paged the nurse but no one ever responded to my call.

I ended up calling in reinforcement from Halifax to help me get a hold of someone. The CF nurse coordinator from the Halifax clinic is the best and managed to track down someone from St. Mikes who then promptly returned my call. If the Halifax CF nurse ever leaves, I'm pretty sure everyone who attends clinic will cry.


Tomorrow I have nothing on the schedule which is excellent. I plan on sleeping in, drinking copious amounts of tea, and watching cheesy movies on Netflix.

Amy and Alley's Toronto Adventures!

Amy and I have been busy during her visit! Although not quite as busy as her last trip as we actually spent the day yesterday snacking and watching Disney movies. We decided that was better than visiting a museum. Here are a few highlights of the past few days (Yes, most of it is food):

Delicious crepes from Chococrepe.

It was closed when Mom and Dad were visiting but it opened up for Amy! 

Sushi takeout from Japango. So far the best sushi in Toronto.

We went for a Mani/Pedi!

Then it was out to the ball game because Dad was in town!

The Sox won!

Delicious almond pastries from St. Lawerence Market.

And a really strange mural. We definitely didn't see any turkeys or elk wandering around the market.

The CN tower was particularly eerie today.

St. Jacob's Market!

Thursday, Amy, Isaiah, and I, went out to St. Jacob's on a quest for more apple fritters. It wasn't as busy as last time when we went on a Saturday which meant we could actually find seating to eat lunch. We found and devoured the fritters and picked up a few groceries. We also found some discount flowers as it seems 1pm is when they call it a day and start discounting stuff. We couldn't resist the '5 bunches for 5$!' calls from all the flower booths so now my apartment looks like spring!

After the market we went into the town where we found a glass and woodworking shop that makes fun Harry Potter style wands and brooms (as well as vases, jewellery, and all other traditional things). Sadly we left them there. We really wanted to take a picture putting hexes on each other with the wands but there were a million 'no picture' signs as well as a man watching from the corner. Maybe next time!

We went a little overboard with our fritter purchases.

Still as delicious as last time!

The flowers still look great, days later.

We didn't move our vase up with us so I know what I will try to make next pottery class! 

National Organ and Tissue Donor Awareness Week!

It's National Organ and Tissue Donor Awareness week! Well I guess it's almost over now.

I honestly didn't know that was a thing until last week as I tend to ignore all the 'weeks' or 'months' for all the organizations out there. However, now I'm a full supporter! But I really think they need to call it the 'Sign Up to be a Organ Donor' week and force everyone to sign up to be an organ donor.

I really don't understand how each province hasn't moved to a opt-out donor system yet considering the support for organ donation. For the 5% anti-organ donors, I'm sorry to tell you but you'll be dead so stop just thinking of yourself. You will be dead and your lungs can either go into the garbage or to save someones' life. I'm not really sure what you think will happen happens to your body but the morgue doesn't want your lungs. Signing up to be a donor doesn't mean you will get worse care, nor does it mean that you will die tomorrow. Just get over your fear and squeamishness about talking and thinking death and accept that you, like everything, will eventually die. Sign your damn card!

Gah!! End rant.

I was trying to not ramble about the importance of organ donation because if you're reading this blog, I'm sure you already know. I guess I can't help myself.

But since it is Organ Donor Awareness week, I guess I should remind you to double check that you are a donor. Also, be sure to tell your family of your wishes because signing the card doesn't give anyone the authority to make you an organ donor without your next of kin's consent.
After doing that that, start harassing your family, friends, co-workers, and random people to sign their donor cards as well. Thank you everyone!

Pottery Class #3!

Last night at pottery class was a night of painting! I was hoping to be able to do something with the bowl I had set aside last class but I misjudged how long the painting would take. I should have known seeing it took Mom and I two hours to paint the two little bowls when we did the drop in class.

It takes so long because you have to ideally do two or three layers and each layer needs to dry otherwise it can end up streaking. I definitely rushed the last bowl so we'll see how it turns out. It is so hard to tell how it is going to look while going since the paint colour is so different than the finished product. It is especially hard when layering the different colours on top of each other (which is apparently the thing to do).

My goblet from last week turned out great! The instructor pushed the bottom in a little so it wouldn't crack in the kiln as the base was so thin. However, it still cracked a little bit in the center of the base but she said to just drop a lot of paint in the cracks and it will be fine. Yay!

The instructor whisked away most of my stuff before I could take a picture but I managed to snap one of the salt and pepper shaker (I painted a blue S and P under the yellow which I was told would absolutely show up post-kiln). My 'flower' bowl was painted with a layer of dark rust, then I wiped off most of the paint, leaving the dark colour in the grooves, and painted over everything with teal. The idea is that the dark rust color will make the grooves pop.

I painted the mug from last week the same as the green/yellow square and everything else the same as the teal tile. I followed the instructions on the back of the tile so I'm sure it will turn out exactly the same... Or maybe it will be something completely different. If it turns out weird, I can always repaint it and send it back to the kiln!

Arghhhh

I hope everyone had a great Easter weekend! I had a great time with family eating yummy food. So much so that my weight was still up today at my doctor appointment with the CF team at St. Micheals. Yay! I actually believe their scale this time because my scale at home also tells me that I've gained weight.

I've been feeling good health-wise since my last visit so I was confident that my lung function was going to be the same or up. And I was wrong. It was down by 2%. Aaaaarrrrgggghhhhhhhhhh. I really wanted to scream that their machine must be broken but since I did the test three times with the same results so that probably isn't the case. Stupid lung function.

I was super nervous they were going to hospitalize me or start me on a host of crazy antibiotics that would zap all of my energy but thankfully no. The doctor said because my lungs didn't sound worse and that I don't feel sick, it wouldn't make sense to pump me full of more meds. Obviously if I wasn't on the transplant list they would be treating it but they seem to be hoping that I can remain stable-ish until I get a transplant. I go back in a month and hopefully it will have gone up again and I was just having an off day today or something.

I thought this would change my transplant status so I would now be in the 'high priority' grouping as  the nurse practitioner went on and on last week about to the importance of telling them when anything changes. But the doctor today said it wouldn't. They really need to make their information a bit more consistent as now I really have no idea what classifies a person as 'high priority.'


I'm pretty bummed about my lung function dropping but I'm trying to be zen about it and am repeating to myself that it is pretty much out of my control at this point. I will focus on the fact that if I wasn't working hard at physio than it would probably be even worse.

Amy arrived today and I imagine I'll be busy too busy with her to obsess over this latest setback. Or blog. If I don't update as much this week, it's because we are off dining on copious amounts of sushi and apple fritters.

Happy Easter!!

Happy Easter all! I hope everyone gets to spend quality time with their family and/or friends enjoying delicious food and chocolate. We have three Easter meals planned this weekend so no need to worry about us being lonely and hungry here in Toronto. This morning, the Easter bunny hid what was left of the chocolate eggs around the apartment (suspiciously after Isaiah got up) for me to find. I wonder how many forgotten ones we will find over the next few weeks.

Spring Cleaning.

Isaiah and I have been spring cleaning this past week. The apartment is spotless! Well...maybe not 'spotless' but the windows have been washed, the dryer has been de-linted, and the toaster has been de-crumbed. 

We also sorted out our winter stuff for Dad to take back to NB next week so we better not need a winter coat or boots after next week! If I do, I'm planning on refusing to go outside until it gets warmer.

Since I've been cleaning, I've also been procrastinating or 'taking breaks' by playing 2048. It's definitely more exciting than cleaning the fridge. The game continues to work well as a game to play at physio so hopefully I don't get bored of it anytime soon. I managed to beat my high score yesterday!

I lost shortly after.

Sketches of Trail

There was sadly no pottery class last night, I guess because of the Easter holiday? The instructor didn't know why as the museum is still open and she doesn't have the day off.
So instead of pottery class,  I watched old movies and practiced my shading/sketching. I've done a few sketches of my sister's dog, Trail, so I tried to fix them up a bit last night. Trail has super fine hair so I find it hard to get the shading right.


 

Transplant Clinic

I had a transplant clinic today, since my last ones have been over three hours of waiting, I was prepared today with my book, water, and snacks. I then met with a nurse practitioner who went over my info, asked me for any updates, and sent me on my way.  It was over in 20 minutes! Yay!

The one thing that I still find weird is the lack of information sharing between the CF hospital (St. Micheals) and the transplant hospital (Toronto General). The hospitals can't get information from each other unless the person remembers to put it on a special server, which they never do. Information like bloodwork, x-rays, and lung functions aren't accessible between the various health professionals which means I get to repeat all the tests or they simply rely on my memory which makes me a bit nervous as I tend not remember test results if they don't effect my daily life. 

It would save so much time and money if they just put all the information on the same server. If we have the technology to perform robotic heart surgery, surely we can merge the information of two hospitals. It's not like it would take an IT person more than a week to set that up (training everyone would be the hardest part).

The only other option that makes sense would be to provide patients with an record of all of their tests so it can be pulled up when asked. It's especially frustrating when they ask me here something about a test I had done in Halifax. I don't know what my sputum sample results were from Oct 2012, that's why we have computers!

Cooking: Cheesy Chicken Enchiladas

On Saturday, I made Mom's Cheesy Chicken Enchiladas. They were one of my favorite meals growing up and I don't make them as often as I should.

I have a tendency go off recipe while I'm cooking as I am too lazy to measure everything or need to use up what is in the fridge but here is the general recipe:

Fry up garlic, onion, chicken, corn, tomatoes, salsa, salt, pepper, and cumin. Add a cup of cheese at the end to melt in.

I debated just eating the filling for supper. What's the point of the bread part anyway?

Fill tortillas with mixture and put in pan. Spread whatever mixture didn't fit into tortillas plus more salsa on top of tortillas. Cover and bake for 25 min.

I bought the small tortillas because apparently I love stretching the 'fill the tortilla' part for as long as possible. 

After 20 min or so, uncover and add cheese to top. Bake or broil until cheese is bubbling.

When finished, let them sit for a few min while you dig out the cutlery so they don't completely fall apart when removed from the pan. 

Yummy!

Great Strides Walk!

On May 25th, my fantastic family and friends from the Moncton CF chapter are participating in the Moncton Great Strides Walk for CF Research (formally known as Moonwalk) and could use your sponsorship! They are close to reaching their team goal!

I know every charity now has a walk and that everyone is tired of being bombarded with requests to sponsor their co-worker's kids. Ignore your co-work and sponsor my family instead!

To those who are skeptical of large charities who just seem to 'raise awareness' and make no actual contribution to the cause they claim to help, I understand. I also roll my eyes at awareness campaigns that seem to involve people buying products that have been linked to the causation of the disease in the first place (ie. KFC pink chicken buckets for breast cancer awareness). Especially since a lot of those products are just used as a tax break or marketing for the company involved and little or no money goes to the charity itself.

However, since I have yet to see a CF ribbon on smoke machines or packs of cigarettes (not that those things cause CF), I would say, being completely biased, that Great Strides is a great charity to handle your money. The money raised through Great Strides goes directly to CF Canada which uses 77% of its money for research, patient support, and education (I know we aren't suppose to judge charities by the admin costs anymore but let's be honest, we all do. CF Canada's 2012 Annual Report can be found here ).

The research CF Canada is supporting is varied and will hopefully directly benefit those with CF. They are currently funding infection research to help reduce flareups; inflammation research to better understand inflammation and design better treatments; CFTR protein research to look at treatments that correct the protein activity; cell membrane channel research which looks at slowing lung tissue damage and more. I have directly benefited from their research,  patient support, and volunteer programs and hope to keep benefiting for many more years.

All of that is my case to why you should support my family in their Great Strides Walk. If nothing else, consider leaving a message on their page to show your emotional support. Thank you everyone!

The team page where you can send your support or messages 


CF Canada's website if you want to learn more about CF research or the charity

Or consider walking in a Great Strides Walk in your area! A relaxing 5km!
If my sister with CF can do it, I'm sure you can too!

Surprise in the mail!

This year it seems that the Easter bunny thought visiting Toronto would be too much effort so it enlisted some help from Canada Post and Laura Secord.

Thank you Easter bunny! I will try to make sure there is one egg left for actual Easter weekend.

No longer a CTRS.

I got an email the other day saying that "My Certified Therapeutic Recreational Specialist (CTRS) credentials have expired...as a result I can no longer use the title of Certified Therapeutic Recreational Specialist...represent that I am certified...or a qualified provider of Recreational Therapy Services." Wow, relax certification people!

I knew this was going to happen as I didn't pay my renewal fee. I figured there was no point seeing as I am not going to be working for the foreseeable future so why keep paying money for a title that I don't need. Even though I knew it was going to happen, I still find it depressing. It's just another reminder of how much my life is on hold while I wait.

Now I really don't know what to say when people ask me what I do. Not that very many people ask anymore but someone did at pottery last week. I just replied that I am waiting for a lung transplant and that I'm not sure what I 'do' anymore. Without missing a beat, the woman who asked said 'well now you are a potter.' So I guess I'm a potter now! Problem solved.

Pottery week 2!

Wednesday's are turning out to be busy because of my pottery class! Well, ok, maybe 'busy' isn't the right term as I had a hour and half nap in the afternoon so let's go with 'full' day instead. Either way, once again I had a great time at pottery class.

My two pieces from last week were back from the kiln and my salt shaker did not collapse! I spent the first half building a pepper shaker and mug. The person beside me made a mug and I thought it looked cool so I totally stole her idea.

I spent the second half on the pottery wheel. While everyone else was glazing, the instructor spent quite a bit of time with me showing me everything I was doing wrong. It takes a surprising amount of muscle to get the clay centered but once it is, it's so much easier to work.

I successfully made two bowls by myself. The first one I decided not to send to the kiln and I'm going to add some design to it next week to make it a bit more interesting. The second one ended up with wavy walls as I pushed down too hard when I was trying to smooth out the top and to even it out, I gave the entire thing wavy walls. Mistakes = creativity! I tried to make a goblet at the very end of the class and it worked! I'm very excited about it, it may have been a total fluke. We'll find out when I try to make a matching one.

Next class it will be time to paint my pieces!

Waiting Game: 6 Months

6 Months!! Wow. Half a year waiting for a transplant. I can't really think of much that I have to report from the last month. Let's see....

- Things are the same at physio. The exact same. It is so boring. My desire to stay in bed instead of going grows stronger every day. I called in 'tired' one day last month because I hadn't slept well that night but I don't think that I can get away with doing that every week.

- I received my support person disability card so now Isaiah can go on the bus with me for free when I'm going to physio or to doctor appointments. It's a great program. He will probably start cycling more now that the weather is getting nicer but it is nice to have that option.

- For those who are concerned about Isaiah and I being bored while here in Toronto, there is no need to worry! This month, I had a afternoon date with a friend who was passing through the city, Isaiah and I went to see the musical Chicago, Isaiah continues to attend his weekly board gaming group, and I just started a 8-week pottery class. Yay! Next month, we have some family coming to visit and a concert to attend. So we are finding lots to do!

I really have nothing else to add, it was a pretty quiet month overall. I have two months before I reach the 'average lung transplant wait time' so I can't start complaining about the wait time until then.

And all that jjjjaaaazzzzzz!

Apple Fritters.

I've had a craving for apple fritters ever since my trip to St. Jacobs so I decided to try making some to tie me over until Amy's visit at the end of the month. They aren't exactly the same as I didn't want to battering each ring individually so I just threw in chopped up apple bits instead. I think it worked just as well. Mmmmmm. 

I found the recipe on food.com and modified it according to the comments and my love of cinnamon.

Recipe:

1 cup flour
11/2 t. baking powder
1 t cinnamon
1/2 t nutmeg
3T sugar
1 egg
1/2-3/4 cup milk
1 apple, chopped (In retrospect, I think an apple and half would have been a better ratio)

Fry in some oil and sprinkle with icing sugar and cinnamon.

Batter all ready to fry!

Fritter #1: Too big. Burned on the outside, raw on the inside. It was later cut into pieces and refried.

Some pre- and post- sugared fritters.

Final haul. There were no survivors the next day.

Stupid Hollywood!

Last night, I was watching Elementary (the US version of Sherlock), and on the episode they strongly implied that a person didn't get the best medical care because they were an organ donor.

AAAGHGH!!! I was so annoyed. Way to help perpetuate the myth that organ donors will receive less than stellar care because the doctors want their organs for their other patients. Good job on undoing the myth-busting-work transplant organizations have been doing.

It should be noted that the person was also a serial killer so that may have had more to do with the excellent medical care. However, it kept being repeated that 'he is an organ donor' with long looks between everyone as though that was the secret code to make the doctor start harvesting his body.

I really hope everyone else who watched the episode took away the message that if you are an organ donor AND A SERIAL KILLER than doctors might hesitate in giving you treatment. Because the general public doesn't need any more reasons to not be an organ donor. The numbers are low enough already and we wanna-be organ recipients need all the donors we can get.

Coping with physical decline.

Today at physio, there was a person (I'm keeping it vague for confidentiality reasons) who was struggling with the 20 minute treadmill walk. They were checking their oxygen levels every 5 minutes or so resulting in a lot of loud beeping as the machine beeps whenever levels are below 88%. Afterward, the physiotherapist had a long talk with them about how it was time to decrease the intensity of their workout as their oxygen levels have been on a slow decline (I realize that it is super creepy that I know their entire conversation but it's really hard not to overhear what is happening 2 feet away). The person looked so upset that I wanted to give them a big hug and tell them it is not their fault their lungs are failing.  

The person looked how I felt back in Nov after my 6 min walk test when my oxygen levels dropped earlier than they had in the test a month prior. Despite the fact that I had started physio during that month and was doing all I could in that time. It is so hard to be physically declining when you follow the treatment plan and exercise three times a week. It can feel like there is no point in trying because trying doesn't stop the lungs from failing. It does not guarantee success.  Hell, not only does it not guarantee success, it doesn't even guarantee being able to maintain a level of health.

Everyone with CF or any other degenerative disease has had to come to terms with this lack of success at some point in their lives. The idea that if you work hard you can succeed and 'beat it' doesn't work for us.  There is no 'beating' some diseases. We don't get to see it slowly reduced or eliminated from our bodies. It is something that is always there and is always getting worse.

You can do everything right; aerosol masks twice a day, exercise regularly, stay away from smoke, eat healthy, take all medication regularly, and still end up needing a lung transplant. The best you can hope for is to delay the decline as long as possible. Following a good treatment plan can help but the disease will progress despite anyone's best efforts. The hard part is that the body adjusts so easily to small declines that the change can be almost imperceptible on a daily basis. Until you wake up one day and wonder when it became so hard to climb a flight of stairs.

I don't think the frustration of degeneration gets any easier. Nothing is harder than making the best possible effort and still feel as though you are failing. It is hard to adjust from blaming yourself to accept that it's out of your control. Or to accept that all you can do it control what you can and realize that while your efforts will not stop the decline, it may help delay it somewhat.  And sometimes delay is all a person needs. Delay can mean the difference between transplant or no transplant.

Pottery class is awesome.

Pottery class was so much fun! It is not structured in any way so I think I'm going to have to come up with some project ideas so I don't spent too much time wondering what I should do for the next 7 weeks. Most of the people in the class already had projects on the go (such as one women's jewelry making for her etsy shop).

I spent 2 hours trying to master (or you know, minimize the amount of clay spraying everywhere) the pottery wheel. The instructor always makes it look so easy! Even though most people knew each other, everyone was really helpful with tips and suggestions for us new people. Once my shoulders were sore and I had a slightly off balanced bowl, I used the rest of the time handbuilding half of a salt and pepper shaker set. The clay shrinks about 10% in the kiln so I'm a little concerned that my shaker will collapse in the kiln as it is not exactly structurally sound.

I also picked up Amy and I's bowls from the drop-in classes. The colours are much more vibrant post-kiln.

Pottery class!

I start pottery class today!!! Yay!!!

Since I enjoyed the drop-in classes at the Gardiner Museum so much (I still have to pick up the bowls, I tried once but they weren't out of the kiln yet), I decided to sign up for a class after much convincing from my mother. I was pretty hesitant about it at first as I wasn't sure if I should commit to a 8 week program but I decided that I should just take the risk and go for it. It helped that I called the museum and I explained my situation to the very understanding women who said they would waive the strict 'no refunds or substitutions' policy for me if I get the call so I didn't need to worry about paying and then immediately getting the call. 

I was debating between 'combination tableware' and 'wheel-throwing' but by the time I decided to sign up, the wheel throwing was full. So the decision was made for me. In case you are wondering what 'combination tableware' means, the description says:

Using mainly hand-building techniques, but also some wheel-throwing, this course will focus on creating unique tableware. Suitable for beginner and intermediate students.

Deciding to sign up for the class last month has been really good for my soul (or optimism, or good-spirits, or whatever you want to call it). It has given me something to look forward too (more than the Blue Jays game) and it makes it so that if I don't get the transplant over the next 8 weeks, it is okay because it means that I won't have to worry about my pottery class.

Be prepared for a lot of pottery-related info and pics for the next 8 weeks! Yay!

Happy April!

Happy April 1st! I hope no one was too badly fooled by anything this morning and that those in Atlantic Canada have had their power restored! 

My lovely partner has been sick since Sunday. This is when we need an isolation chamber for him to hide in so I don't get his 'cold'. I have wiped down the entire apartment several times and am trying to stay away from him which is not super successful with our tiny apartment.

While I was rolling my eyes over his complaints of a sore throat, it occurred to me that perhaps I'm not the most sympathetic of people when it comes to dealing with a sick partner. It is possible that I feel like a slightly sore throat, a barely-existent cough, and being somewhat tired does not warrant complaining (quote from said partner: "I haven't been complaining!"). I mean he hasn't even lost his appetite and had the energy to go outside today!

I know I should be more sympathetic but I think my sympathy-meter is slightly skewed by my disability. The conversation in my head is something like "oh, you coughed once this morning? That's too bad. I had 3 coughing fits before breakfast and I'm feeling fine* so what is your problem?" Of course I rarely say these things out loud. Rarely.


*'fine' being a relative term, of course.