Friday, 30 May 2014

Good physio day.

I must say that today at physio was the first time in awhile that I actually felt really good. I mean, I always have some days that are better than others, but today it wasn't so much of a struggle to keep up my 'suggested' pace on the stationary bike and I didn't feel like I was going to go flying off the treadmill. Yay!

I'm not sure if this means that the puffer is working or if I just happened to have a really good day. Or maybe it's because the weather has gone back to reasonable temperatures (around 20). Whatever the reason, I'm not complaining.

Thursday, 29 May 2014

Pottery Class #8

My last pottery class. Boooooo. I spent the entire time painting and managed to get everything done. It helped that I painted almost everything with the same underglaze and had all the colours already planned out. I thought I was pushing it with all of my stuff but someone else was planning on glazing almost everything she made in the 8 weeks. Needless to say, she did not get them all done.

The only piece I didn't have completely planned was my plate so I save it until the end. I got a little tight on time so all my potential plans of fun lines or a drawing went out the window. I used the paints I had on hand and just threw something together. There is something to be said for not having time to over think about a design.

The bright green on the goblet is actually the clear glaze. The green is a food dye that apparently burns off in the kiln. It was a bit concerning while painting it on although I understand the practicality of it as it makes it easier to see while painting. It seems that a lot of the glazing process in pottery is experimentation and trust that the colours will change after firing. 

I got my bowl and vase back from last week. I like the bowl but the vase is much darker than I had anticipated and I'm not sure how I feel about it. It looks really red in the picture but under natural light and from further away, it's almost like a red/brown. I find it hides the texture of the vase. I'm going to see if it grows on me and if not, I think I'll take it to a drop in class and put a coat of blue or teal to try and brighten it up a bit.

I can't believe the classes are over, now what am I going to do with my Wed nights?

Tuesday, 27 May 2014

St. Micheals doctor appointment

Today, I had a dr appointment at St. Mikes. The good news is that my lung function went up one percent from last month which means it's hasn't continues to crash out. The bad news is it only increased one percent so it's still down from 3 months ago.

I'm still coughing more than usual and haven't really bounced back energy-wise from my cold but since I don't seem to be having any cold or flu-like symptoms, the doctor felt as though I have more of an inflammation rather than an infection.

[Just to refresh everyone, an infection is when the body comes in contact with a infectious organism, ie bacteria, fungi, virus; whereas inflammation is a reaction of the body to a stimulus or injury, ie allergies to pollen, asthma flare up to cold weather, or localized swelling after a bear mauling. A infection can cause inflammation but inflammation is not necessarily caused by infection.]

The doctor seemed much more concerned about my decreased oxygen stats than my lung function. I was worried they were going to hospitalize me and I was willing to agree as long as they let me go to my last pottery class tomorrow night (because, you know, priorities) but thankfully, the treatment plan is to try a steroid puffer ( Pulmicort; the brown one) and if things haven't improved in a week, start a crazy antibiotic cocktail mix. I really hope things improve in a week because being on three antibiotics simultaneously is never a fun time.

Even though it would seem with all my declines in the past little bit, that I would be bumped down to the 'level 2' group (level 2 is high priority, I double checked today) on the transplant list but no. The doctor today seemed to indicate that the change happens mostly if I'm hospitalized or if I'm not responding to any treatment. This is continues to be different than what the transplant clinic told me. I hope the two hospitals get in touch at some point.

I return to them in two weeks. I would really like this puffer to magically cure-all.

Monday, 26 May 2014

Tomato Goat Cheese Pie

Holy heat wave. It was 30+ degrees here today and while I don't like to complain about the heat after our crazy winter, it was too hot for me! I was starting to sweat just sitting on the bus. Thankfully physio wasn't very busy and I was able to have two fans on me almost the entire time.  It was slightly better at the apt where there was a bit of a breeze but I still can't believe it's time to turn on the AC already. It's only May!

Isaiah made a supper tonight as I was too busy complaining about the heat. I know I usually just share the stuff I've made, but this one was too good to pass up. He called it 'Tomato Goat Cheese Pie' but it was more of a giant calzone (except with pie dough) and used feta cheese. Seasoned with oil, salt, pepper, and basil. Delicious!


Sunday, 25 May 2014

Great Strides Walk!

Today is the Great Strides Walk where people all over the country will walk to raise money for CF research. Thank you people across the country! And thank you to everyone who donated to those people! If you wanted to sponsor my family and forgot, there is still time. You can do it here.
Even if you just want to leave a message wishing them well, they would appreciate that too. Thank you to everyone who supported them and CF research!

Speaking of CF research, really randomly, one of the ladies in my pottery class works with sputum samples from people with CF from the St. Mikes and the Sick Kids Hospitals. When I told her that I was waiting for a transplant due to CF, she was excited to tell me all about her research. She is an evolutionay microbiologist who studies the evolution of one of the common viruses in people as they age.

They hope that by understanding the adaptations of the virus, they will be able to come up with better treatments over a persons life. We tried to figure out if she would have any of my sputum samples but all of hers are over 8 months old so she wouldn't have any of my stuff. However, someone else in her lab looks at the antibiotic resistance of the new samples so my sputum has definitely been there. The research is happening and it's pretty exciting. Her research won't help me now but hopefully it can help young people with CF so they can keep their lungs as healthy for as long as possible.

Hope everyone has a great walk today! 
The CN Tower was blue and turquoise last night in honor of CF Awareness Month and the Great Strides Walk. I'm not sure how much awareness is raised by turning the tower blue but judging by the Tower's list of lightening schedule , it seems to be a thing that organizations do.

Saturday, 24 May 2014

Better to know or not to know?

Before I moved to Toronto, my brother asked if I had the option, would it be easier emotionally to know when the surgery is going to happen or is it better that it is a surprise unknown date? At the time, we both thought that not knowing the day would be easier as it doesn't allow you to have that emotional build up during the weeks or months before the surgery. Now, however, I'm not so sure.

At the beginning, it didn't bother me at all that I didn't know when the surgery was going to happen. However, as more and more time passes, I start to think the trade-off from the lack of emotional build-up to one specific known day, is a slow daily emotional drain. Every time I plan something, I wonder if I'll be able to attend. Every time I attend a show, I figure out an exit strategy in case my pager goes off. Every time I can't get a hold of Isaiah or my family, I wonder what would happen if I got the call at that moment. As much as I try to not think about it, everything seems to revolve around that 'just in case' or 'what ifs'.

I realize that all of this is pointless speculation as it's not like I have a choice in any way but it's something I've been pondering for the past few days. But honestly, waiting for major surgery in either situation is going to be stressful.

I'm just very thankful that I'm not currently in contention to break the record number of false calls which is 8(!!!). That person must have stopped believing the nurse after the 4th call and stopped notifying family after the 7th. What an emotional roller-coaster that must have been. I'll take my silent pager over that experience any day.

Friday, 23 May 2014

Toronto Gardening!

I mentioned last week about having to do a walk test this month. Turns out there was a miscommunication and I don't have to do it until the beginning of June. Yay to that!

Yesterday, I finally got some lettuce to grow on the balcony! Our balcony is pretty small and the only direct sun is in the morning so I think lettuce/spinach/chard are the only good options.  I intended to buy a mix of greens seeds but the garden center only had already started plants available so I left with a 4-pack of romaine lettuce. It was so hard to walk out of the garden center without anything else. They had so many fun plants I wanted! Isaiah kept reminding me that we only get a few hours of sun and have about 4ft of space. Mean Isaiah! The dollar store containers aren't quite as nice as the ones I have at home but they'll have to do for this year.

Also, to everyone freezing in the Maritimes, yes it is warm enough here to start gardening. The weather has been above 15 for the past few weeks and risk of frost is long gone. It's quite lovely.

Bring on the salads!

Thursday, 22 May 2014

Pottery Class #7

Last night's pottery class flew by! Even though I had planned out everything I was going to do, there wasn't enough time. I hand-built a mug to match the one I made earlier (no picture as the instructor whisked it away before I had the chance). I also made a long plate, I'm not really sure why or what I'll use it for but I had been thinking about making a serving-type plate so when the instructor just happened to bring in the mold this week, I thought I might as well use it.

Those were my last in class pieces as I spent the rest of the class painting and next week will be all painting as well. This week, I barely managed to finish the leaf vase and only got the undercoat done on the goblets. The vase took way longer than I anticipated because of all the texture. The inside ended up being a bit of a lost cause as I reach many of the crevices. It will have to go somewhere in the apt where no one will can look at the inside.

Next week (the last class!) is going to be a test of time management to see if I can paint all my remaining pieces in three hours. It's not really a big deal if I can't as I can always just go to a drop in class to finish them but it would be nice if I could do it all at once. 

I got my bowl and small cup back this week. I really like how they turned out.

Waiting for the blue undercoat to dry.
Plate. The curved edges are an attempt to hide the fact that I can't roll out a block of clay evenly.
The cup on the right was used to test my colour idea for the vase so hopefully it will look about the same. It's so hard to know as the coats of paint are rarely the same thickness each time.

Tuesday, 20 May 2014

Lung decline in the family

People often ask why it's me and not my older sister, Amy (who also has cf), who requires the lung transplant. Logically, it feels like the older person should require a transplant first. Unfortunately, cf doesn't behave logically and there is no way of knowing why I am the one who requires a lung transplant first.

Well, that's not true, the reason I need the lung transplant is because her lung function is significantly better than mine and she would not be eligible for one. But as to why my lungs crapped out before hers, who knows! Cf presents differently in everyone so although we have the same genetic mutation, there may be a variable that makes me more susceptible to infection.

Or maybe it's not genetics at all, maybe I was exposed to more viruses over my life or maybe I didn't exercise as much or maybe she didn't skip her aerosol mask that one time, or maybe...or maybe... the reasons could be endless. I've given up wondering 'what if' or 'what could I have done differently.'

The thing with cf is that there is such a slow decline in the lungs that it is hard to pinpoint overall health to a specific infection or behavior (unless you smoke or refuse treatment or something obvious). 

So basically, I have no answer for you. I realize that isn't very satisfying but such is life.

Monday, 19 May 2014

More cards

My card supply has been diminishing so I spent yesterday working on rebuilding my stock. Not a very exciting way to spend a long weekend but definitely relaxing. I'm still not up for much more than a relaxing day doing arty things. I can't believe how long this cold has taken over my life. It's amazing/terrifying how slow my recovery time is now. What would take anyone else 4 or 5 days to get over, seems drag on and on into weeks. Urg. But the upside is that I made some pretty cards!

I recycled some of the beautiful cards that people have sent me as I can't stand throwing them out but I have no room to store them all. I really like how the gecko series turned out.

Sunday, 18 May 2014

Scenic cards.

I haven't been drawing as much lately but I have been playing around with watercolour landscapes to make for cards. The beach scene was for a friends wedding card (whose wedding was today, congrats Mark and Carina!!! I wish I could have been there). The first version ended up looking like there was a serious storm brewing as the blue was much darker than I anticipated. So I added some stars to turn it into a night scene which is much more cheerful. The second version is much more representative of a beautiful Caribbean day.


Friday, 16 May 2014

Growing lungs in pigs.

Did anyone see this article in the Globe and Mail about the the development of humanized pig organs? If you missed it, basically the news is that a team at United Therapeutics Corp. has started to develop pig lungs that have been altered to be compatible with humans. Sweet!

They are called 'humanized pig organs' and they hope to develop them for human lung transplants. It's like a sci-fi novel except it's actually happening. It's fascinating and amazing what they can do with genetic modification now (it's important to remember that GM is a tool that can be used for both good and whatever Monsanto is). Growing organs in pigs would solve so many problems. No more waiting around for people to die. Reduced risk of rejection. Bacon for all.

Obviously this is still in the research stage and they aren't about to give me a pair of pig lungs but the possibilities are incredible. Last week the National Heart, Lung, and Blood Institute said that they were able to keep a pig heart functioning in the abdomen of a baboon for a year. The first though is that is a pointless thing to do but it does show that pig organs can be made to be compatible with other animals. Between this research and 3D printing, the future of organ transplants continues to look more and more promising. Science is awesome.

Thursday, 15 May 2014

Pottery Class #6

As I suspected, my vase from Sunday wasn't yet out of the kiln. I spent most of the class making a large fruit/serving bowl in the same style. It isn't quite as curved as I had anticipated but I like the way it turned out.

I spent the rest of the class painting the bowl and tiny cup. I used the cup as a test run for the colours I would like to use on the leaf pieces. I painted it teal with a blue underglaze and a light raspberry coat on the outside. I just made up the colour combos instead of using a tile suggestion so we'll see how it turns out. I can always paint over it again if it looks weird. For the bowl, I used 'burnt sugar' (redish brown) for the first coat and teal for the rest.

I also repainted the flower bowl because it had turned out streaky the first time. I opted for a raspberry coat which is apparently my new colour of choice. I found how that it is significantly harder to paint something that has already been glazed as the piece doesn't absorb anything. It takes way more time.

Only two classes left! Where did the time go? I still have so many ideas of things to make. Do I spent my remaining time handbuilding something, work on getting better on the wheel, or on getting the glazes right for the stuff I have made? So many options! I love that 'what will I make at pottery' is now the focus of my stress. There is no time to get depressed over my ever-declining lungs when I have pottery to make.

The plastic will be removed in a day or two when it's dryer but it will be fired inside the bowl to avoid losing the shape.

Tuesday, 13 May 2014


I didn't have to do my walk test at physio yesterday! I think they will want me to do it tomorrow though. My oxygen levels were a bit higher than Friday but still not totally back to where they were before this infection. On the treadmill, they were still dropping below 88 at a slow pace so the physiotherapist had me bump up my oxygen to 4L which pushed me back up into the acceptable range. I was able to speed up a bit after that and did 10 minutes at my regular pace.

I'm surprisingly not feeling discouraged about this. I'm not sure if it's because I've actually accepted the fact that I'm declining or if I've magically developed a zen attitude about life (most likely neither). My oxygen level was set at 2L over a year ago as a 'as needed' and 'while exercising' basis so it isn't shocking that my lungs would now require more oxygen while exercising. I think this latest hurdle is easier to process as I'm feeling much better physically. I'm sure I wouldn't have handled it as well two weeks ago. Mostly because everything sucks when all you're doing is coughing and blowing your nose.

On another note, back in Dec, you might remember that I was freaking out because there was someone at physio post-transplant who looked awful and could barely walk? They were at physio for a check-in appointment and they looked absolutely fabulous (let's look past my creepy-stalkerish ways). It's incredibly encouraging to see someone who was so physically weak have such a transformation. It keeps me hopeful.

Sunday, 11 May 2014

Pottery Class #5!

Happy Mother's Day! I love you Mom! Your card is in the mail. I didn't's just possible that up until three days ago, I thought Mother's Day was next weekend.

Since I had no annual Mother's Day hike to attend, I went to the pottery drop-in class instead. I know, I know, I'm suppose to be resting my lungs but I was able to attend the drop-in class to make up for the class that I missed and I couldn't pass that up. The drop-in classes are only two hours compared to the three hour classes but I'm happy that I could make up some of the time since their website was so intense about 'no refunds or substitutions!' I joined all the mother/daughter dates and spent the full two hours hand-building a vase. 

I started with a plan to make a vase but what I ended up making is worlds away from what I had originally intended. This version is probably better. I can't imagine it will be out of the kiln by this Wednesday's class but I'm already excited to see how it turns out. I need to start thinking of colour options. *fingers crossed that pieces don't fall off in the kiln*

Saturday, 10 May 2014

End of life care.

I was listening to a old Radiolab podcast (one of the best podcasts out there, subscribe to it now, you'll learn so much) last week , and the topic of discussion was end of life treatment and the disconnect between the wishes of average people vs doctors. Listen to it here.

They started by talking about a study done by Johns Hopkins University where they asked doctors "if you had a brain disease or brain damage that can't be cured, you can't recognize people, you can't speak understandably, and you're in this condition for a long time, indicate your wish for the following medical procedures: CPR, ventilation, dialysis, feeding tube, surgery, etc..." As you can see below, the vast majority of doctors responded that they would only want pain medication as a treatment.

That was then compared to interviews of people where the majority replied yes to CPR and most other forms of treatment.

The hosts of the show found the difference between doctors and non-doctors answers quite disconcerting (as did, I'm sure, everyone else listening). They talked to a doctor who said basically that the reason for the disconnect is a lack of education on the success rates or severity of the intervention. For example, doctors know that CPR works 8% of the time (with only 3% of the survivors returning to a pre-CPR condition) whereas most of us get our information from TV shows like ER and Grey's Anatomy where CPR works 75% of the time.  Damn you Hollywood!

The doctor felt that a lot of the time, often the treatment can be worse than the actual disease and while it may briefly prolong your life, it's not worth the pain it causes.

It's kind of terrifying that people are getting medical treatments that doctors themselves would never dream of doing to themselves or their family. Part of it is a lack of information on what the procedure will do for the person and part of it is families wanting to do whatever it takes to extend the person's life.

A doctor they interviewed said that the topic is hard to discuss with families because it is difficult for families to hear that there is no hope of recovery. It is made harder by the fact that 90% of patients don't have a end of life plan. 90%! That is ridiculous.

The paradox of the entire situation is that when asked, everyone says that they would like to die quickly and without pain but at the same time, most people want every medical intervention done to prolong their life as long as possible. Often the artificial prolongation of life means that death is neither quick nor without pain. The hosts concluded that a good death means "loving life with your whole soul while being prepared to die when there is no more that can be done."

That is easy to say but it doesn't help when a family is being asked if their family member should be placed on a ventilator.  I know people hate thinking about death, but is avoiding the end of life conversation worth it if means that your family won't know what to do if you can't make the decision yourself? Why put the burden on your family if you already know how you want to die? And if you don't know what kind of end of life care you would want, what makes you think your family is going to know? Think about how hard it is to make easy decisions as a family (ie. what will we order in for supper?) and then imagine trying to make those decisions when about someone's life. Wouldn't it be easier to decide when you actually have time to think about the decision and no one is imminently dying?

The whole point of my rant is that there needs to be better education from health professionals about end of life care options because clearly watching ER and House a few times doesn't cut it. Also, talk to your family about how you and they want to die while everyone is still healthy. Put it in writing and it will make decisions much easier when the time arises.

Friday, 9 May 2014

Yay Zoo! Boo Physio.

We went to the zoo yesterday! It was a gorgeous day and I was feeling much better. We also went because we had a pass that expired on Sat and we were running out of available days. The little zoo train was running so we took it around to try and decrease the walking. It didn't have as many stops as I had hoped but it still decreased our walking a bit. I stuck to the animals close to the stops while Isaiah went around to see all the other animals. It was nice to be able to stay outside and not have to run (or walk slightly faster) from pavilion to pavilion to stay warm.

I didn't think that I overdid it at the zoo as I felt good energy-wise last night but obviously my lungs didn't agree as this morning at physio, my oxygen saturation levels went crashing down.
Argh!! It was low on Wed too but I don't think as bad. However, I wasn't checking as often so I may have been without realizing it.

My saturation was down to 86% after my 'warm up' on the treadmill. I checked to see if I was okay to increase the speed and realized that I not only could I not increase it, I had to reduce the intensity. The frustrating part about it is that I didn't feel short of breath or was coughing or any of those symptoms one is suppose to have. I mean on one hand, it is good that I wasn't winded but on the other hand, I clearly have no idea when my oxygen levels are low which is a bit concerning.

This weekend is going to be a 'lay low and hope my lungs feel better by Monday' type weekend. On the positive side, here are some adorable animals.  

Mama giraffe. Her baby was out in the field and made everyones heart melt.
Ms. Lion discretely eyeing everyone.
Penguins and pelicans chilling out together.
Baby polar bear has grown!
Still likes to play with his bucket though.
Mr. Polar Bear enjoying a swim.
Mr Panda deciding which bamboo stalk to enjoy next.

Thursday, 8 May 2014

Pottery Class #4!

I made it to my pottery class last night! I also made it to physio in the morning which was must less exciting after having not gone for a week. My oxygen levels were pretty low even though I was trying to take it easy. Argh!! Stupid lungs. Hopefully they can bounce back by next week when I'm scheduled for a 6 minute walk test.

At pottery class, I went thinking that the first thing I would do, would be fix up the bowl that I had saved from the second week. It was a good idea but the instructor told me that the bowl was too dried out to do anything with and that I could scrape it a bit but it would crack if I tried to shape it too much. So much for that plan! I spent the class on the pottery wheel. I have a great ability to make bowls that have no bottom as well as ones with walls so thin in the middle that they collapse onto itself. That takes real talent.

I successfully made two small goblets and one small cup thing. The instructor told me that the goblets are usually made in two pieces (a small bowl-like shape at the bottom, and a large round cup for the top). That would explain how people get the base to look so good. I think it would mean I could make a large cup which would be nice as mine turned out pretty small. They are mostly small because that is about all the clay I can physically center on the wheel. It takes some serious muscle (more than mine) to get a large piece of clay to get centered evenly, way more muscle than I would have thought before this class. I have a hard enough time with small bits of clay that my dreams of throwing a giant vase have quickly disappeared.   

I also got all my pieces back from the kiln! My first pieces from class! One bowl, I decided that I'm going to repaint as it turned out a bit streaky but the rest I brought home. The salt and pepper shakers worked! To be honest, I only half believed when the guy said the blue would show up.

This week's creations!

Tuesday, 6 May 2014

7 Months!

It's been seven months since I've been listed. I usually do a summery of the past month, but I thought instead I would mention that there is an article about me in the Globe and Mail today about the transplant process. It's in the actual paper or you can read it online. It basically describes what it's like to be on the lung transplant list and hopefully it will encourage people to sign up to be organ donors.

I'm not crazy about the headline 'life on hold' because it implies that everything I'm doing while here in Toronto isn't 'living' (which we all know isn't true) but I'll look past that because the article describes everything else really well. Plus 'women learns how to make pottery while waiting for lung transplant' isn't quite as catchy.

Monday, 5 May 2014


Ok, enough complaining from me about being sick. Let's move on to more interesting things. Like this article in the Globe and Mail about how illness in women is related to an increase in divorce rate. 

"The newest study, presented Thursday at the annual meeting of the Population Association of America in Boston, found an increased risk of divorce in older couples when the wife – but not the husband – became seriously ill."

The article typically blames the fact that men are not 'traditionally caregivers' and that they flee at the idea of having to care for someone (I may be paraphrasing). However, a women from the Canadian Cancer society said that women shouldn't be afraid of being abandoned when they get cancer because the study just looked at people with brain cancer so it shouldn't be extended to all types of illness (not so hopeful for those with brain cancer). Also, she says that the study didn't look at who initiated the divorce so maybe the women are deciding they don't want to spend their now limited years stuck with a super annoying partner (again, paraphrasing).

The whole point of the study was to look into caregiver supports and ways that that social workers and doctors can better support a couple in the stressful time. This is important because being a caregiver is a tough thankless job. The man that they profiled (he photographed his wife's struggle with breast cancer for three years) said that he 'has never been as happy as I was during that time.' That does not always happen.

Being someone's caregiver is hard. It's exhausting and challenging and while it may bring some couples together, it can just easily drive them apart. There are countless reports of caregiver burnout; stories like how the caregiver becomes sick from the stress and refuses to seek medical treatment because they refuse to take any time for themselves.

Burn out can happen so easily if the illness is prolonged or if things don't improve as expected. Caregivers can have guilt over taking a break because 'why should they be having a good time if the other person can't.' Or have fear that no one else would be able to meet the ill person's needs as well. Or feel like it is a failure if they are unable to provide all the support. Then there is the extra guilt about venting frustrations because no one wants to be the jerk complaining about how hard it is to take care of a person with cancer. No wonder so many couples end up separated.

I think that Isaiah and I have been pretty good in avoiding caregiver burnout. It helps that while he has been picking up more than his share of the housework, I can still help out some and have my own activities. He still has his weekly board game nights and often goes out cycling or to the market during the day. Also, my family consistently remind him that they can step in, if he wants to go back to NS for a bit. The fact that he is the most laid back person ever, helps when dealing with stressful news or when I freak out with emotions.

One of the things that isn't often discussed and that I have found the most challenging is finding the balance between being partners as well as being in a caregiver/care-y (care-ie? care-e? being the sick person?) relationship. It really changes the dynamic of the relationship and can be hard to figure out.

I've spent the last hour writing and re-writing how to best explain the struggle and I honestly can't find the right words to convey the frustration and helplessness and vulnerability and all other emotions of having your partner become your caregiver. It adds such as weird element into the relationship that was never discussed in any relationship advice guide I've ever read (not that I'm super proficient in relationship advice books). Honestly, it's still something that we are trying to figure out but at least he doesn't seem to be having caregiver burn out at the same time. 

Sunday, 4 May 2014

Feeling feelings.

Being sick has brought back all my 'ahhh I'm dying' feelings. I started having them after my last doctor appointment when my lung function was low but Amy's visit helped distract me from it all.  I was hoping that enough time had past that I would have subconsciously processed all the information but apparently two weeks is not long enough! It doesn't help that I got sick and don't have the energy to leave the apartment.

Stupid feelings. I thought I dealt with all of them awhile ago. They shouldn't be allowed to return. Arghhh!!! The thing is that when I'm 'healthy' (ie. better than right now), the whole 'dying' part isn't as prevalent. It's easy to ignore that I was given 2-3 years to live (without a transplant) because I can still participate in activities I enjoy. I still get to go to museums, shows, pottery class, do art, and read books but when I get sick like this weekend, than all I seem to do is curl up on the couch and think about death (good thing Netflix exists otherwise I would feel even worse).

I know I should expect this more. I'm sure everyone has feelings of 'arghh I'm dying!' when they are on the transplant list. And I know this is just a passing phase. I know that most likely in a few days, I'll start to feel better and my coughing will reduce from a thousand to a hundred times a day. I just need to process this latest bump in the road and move on. I know that I'll get through this but right now, it just seems hard to shake.

Saturday, 3 May 2014

Happy Birthday Isaiah!

Yesterday was Isaiah's birthday. Happy Birthday!! We made pizza, garlic fingers, and a crumbly carrot cake and played board games. This morning Isaiah climbed the CN tower as part of his birthday present. They do it annually as a fundraiser for WWF and it takes place from 6-10am before the tower is open to the public. Because who doesn't want the chance to climb 1776 stairs?! You aren't allowed to take anything up with you (ie cell phones, water, camera) which they are super strict about. Apparently they had issues of stuff falling on people below.  Isaiah left enthusiastically at 730 this morning and returned less enthusiastic around 9. No, I did not go with him.

We both continue to cough but are definitely on up the upswing of things. Sleep and meds have definitely helped. For once, it wasn't me keeping us up with insensate coughing during the night. I almost started complaining when I woke up to coughing at 230 but I thought that 'your coughing is annoying' comments would not be appreciated at that time. 

Well done!

Thursday, 1 May 2014

Still sick.

Happy May! I have not been miraculously cured overnight. Boo! Isaiah has joined the fun of being sick as well. It's a party here in Toronto right now. A chicken noodle soup and kleenx party! Good thing we had a stockpile of broth in the freezer. 

I have spent the day laying on the couch and watching the first season of Veep. I tried to have a bath but ending that quickly after I overheated, had a coughing fit, and then proceeded to throw up into the tub in which I was bathing. It was not the highlight of my day. Or week. Or life really.

I have managed to keep down my supper broth and noodles as well as a ton of water  and part of a chocolate bunny so as long as I don't go near any steam or do anything to provoke a coughing fit (ie moving), I should be able to avoid any further vomiting. I would say that I will once again be skipping physio tomorrow morning and sleeping in for as long as possible. Sleep will cure all!