Wednesday, 29 May 2013

A fly went up my nose

It was such a gorgeous day today that I couldn't stay inside any longer. So I thought I should get off the couch and go for a bike ride. Before you start thinking that I've found a love of exercising, this only happened because yesterday I drove to the library to get my books. That doesn't sound so bad until you discover that the library is one block from my house. I hate walking up hills and there is a hill on the block so I find it a bit of a struggle to walk up. I usually stop at the library on my way back or to somewhere so it seems less like I'm driving one block. However, yesterday I had nowhere else to go but I drove anyway. As an environmentalist wanna-be, it was a low moment of my week.

So back to today, it was sunny and I could not come up with any good excuses to stay on the couch. I do enjoy cycling and am very comfortable biking so would much rather do that then go for a walk. So, I put the oxygen tank in the bike panier (my physiotherapist would be so proud) and off I went down the giant hill that is the hill of Springhill. There is really no other way to start a walk or bike ride in this town than by going down a hill.

I decided to cycle down the connection road which starts off downhill and with the wind at my back, I was flying. At that moment a transport truck passed me, and I brilliantly decided to ponder the thought of what would happen if I hit a rock and crashed out.  Then I started to panic that if I fell over, the oxygen tank would explode and I would die a fiery death on the side of the road. It would be the stuff movies would be proud of as the fireball would blow me into the trees or something equally stunt-awesome. When you watch enough James Bond, you know that a mere fender bender can make a car explode so imagine the explosion when you add an oxygen tank into the mix. Physics be damned, I'm sure the movies never lie.

While these thoughts were going through my mind, a fly went up my nose.

But it didn't go all the way up because I had the oxygen tubing in my nose. So it more went halfway into my nostril and then proceeded to squirm around. Meanwhile, I was still zooming down this hill with cars flying pass me. I couldn't stop suddenly because I was going too fast and my feet were locked into those tiny little pedals. 

I just kept thinking, this will be how I die, I will never make it to the transplant, I will die because a fly went up my nose. I will crash to the ground and explode in a ball of oxygen saturated flaming fire. They will have to write 'death by a fly' on my memorial site or memorial library or memorial children's hospital. Because surely my awesomeness deserves one of those.

I made it to the bottom of the hill and was able to stop safely and I finally dislodged the fly from my nose wiped off the tubing and continued on my way. I can confidently say that nothing as exciting happen for the rest of my ride. When my ever supporting partner picked me up with the car at the bottom of the hill (its a big hill!) he said that if I fell over, I would simply just fall over and there would be no explosions. He is so logical.

I am sleeping with one eye open tonight for fear of the nose- fly coming back for its revenge.

Tuesday, 28 May 2013

Plarn and Arrested Development

Sunday I spent the day marathon watching the 4th season of Arrested Development and knitting.

What was I knitting you ask?

Plarn! The latest trend in enviro-upcycling, Ok, I have no idea what the enviro-upcycling trends are or even if I used that word correctly but it is something I read in a book (yes book) and thought I should give it a try.  I wanted to have a little basket to hold my facecloths in the bathroom so I that would be a good place to start.

'Plarn' is basically what people call it when you cut a plastic bag into a solid strip and then use it to knit something. There are some amazing bags and other items made with this material that you can find online. Seeing as I just learned how to knit in March, I'm decided not doing anything fancy.

After cutting up a bunch of plastic bags (all the pics I saw online had people with red and white bags but I only had one of those, the rest being ugly green, greys, and brown) into strips, I knitted a basic square base. I then used it as a rough guide on how big to make the sides. I made four different sides and then used hemp thread I had to 'stitch' them together.

Voila! A basket made of plastic bags.

I think it would look better if I had better coloured bags to start with but it is just for my facecloths in the bathroom so it will do just fine. I don't think I will be making a purse out of this material anytime soon unless the grocery store starts handing out prettier bags.

Saturday, 25 May 2013

Hiking with oxygen

Yesterday my partner and I went for a little hike around the bird sanctuary. I should probably preface this by saying that my doctors have told me that I need to doing low-stress endurance type exercise 2-3 times a week. I did very well in March when I first left the hospital, I even joined the gym and did a 5 km walk (the 'Transplant Trot') in April. However, since my appointment in May when I found out that my lung functions had dipped down again despite all my efforts, I've kind of stopped exercising as much. And by 'kind of', I mean I have stopped.

So with that in mind, my partner drug me out for a hike declaring that it was time I got back into it. *sigh* Another aspect of exercising is that I have been prescribed oxygen for when I "exert" myself. I've been lucky that I haven't had to use oxygen full time yet so I realize that having to use it while exercising is not that bad compared to some people. However, I still have not gotten use to wearing it outside of the house. I have the little tanks so I can use it when I exercise out of the house which is super convenient. If only they could make a way so the tubes were somehow invisible. I need Harry Potter's invisible cloak for the tubing. I guess I'm self conscious and embarrassed of needing the oxygen. I hate feeling sick and having to wear oxygen while in public makes me feel sick.

I hear stories from people about how they know someone who takes their oxygen everywhere and how it has not stopped them from doing anything. Those people are fabulous and while I do not want to stop doing what I want to do due to self-consciousness, I would rather not take the oxygen with me. I can hear my sister and mother in my heading telling me that I need to just 'get over it' and that there is nothing I can do about it and I need to just carry on. I hate when they are right.

Back to the hike yesterday, I get off topic so fast, I decided that since I do feel better when I am using oxygen while exercising, I need to suck it up and hope no one sees me. I put the oxygen tank in my little backpack and off we went. It took me until the bottom of the hill to decide that I should probably actually turn the oxygen on and start using it. We only met one other walker and I was pretty quick to whip the cord off my face and drink some water to try to distract from the cords. I do not know what I'm so self-concious about. I mean, if I saw someone hiking with oxygen, I would just think 'good for them' and not really think about it.

So I need to just strap on the oxygen tank and go on doing what I can for now because it probably won't be too long before I no longer have the option. If using it now will help me avoid using it full time, then I need to get over myself because I'm sure no one is really paying attention.

Thursday, 23 May 2013

End of Your Life Book Club - Book Review

I am a fairly big reader and I recently read "The End of Your Life Book Club" by Will Schwalbe. I went into this book knowing nothing about it so I had no expectations. It did not take long to realize that it would not be a book that would distract me from the the thoughts of death.
It is a first person account of a man whose mother is dying from cancer. They spend the last few years of her life reading and discussing books together. The books ranged from books that I have read years ago to books I had never heard of before. They were definitely not reading the latest bestseller crime thrillers by John Grisham.

While it was a book about heavy topics, it was not a difficult read. However, despite my love of books, I did find that I started skimming through the paragraphs that listed and described the books that they read. I think it would have been more interesting if I had read all of the books the author discussed.

The book did make me want to read the "The Etiquette of Illness" by Susan Halpern. Schwalbe described it as a guide on how to talk to people with illnesses and how to approach death and dying as a caretaker or friend. I think it would be helpful to read as I try to handle social situations involving illness. I hope it says what to do in social situations for the person with the illness so I know how to talk to acquaintances (see previous post).

I thought the discussions they had about death were very interesting. The Schwalbe's mother had a very full life and spent a lot of her time traveling and doing volunteer work in or for Afghanistan with the refugee camps. I thought the most poignant section in the book was when a friend mentioned to Schwalbe that if his mother had the ability to choose her death, having to choose death in her late 70s surrounded by friends and family having lived a full and happy life, would not be the worst decision to make. It got me thinking that while we can not choose when we die, we do choose how we live.

Wednesday, 22 May 2013

"Bird in Tree" Art

So somehow this blog is quickly becoming more about CF and dying and less about the art projects I have tried lately. I totally understand the CF blogs that describe how the person is doing with their health as I think they are good for friends and family to keep updated but I am trying to have a blog to be more than the crappy medical side of life. 

So with that in mind, here is one of my early project when I was first put off work.  The background story to this project is that I have scraps of fabric from a quilt that I previously made that I thought would look good on the wall in the bedroom. I bought 9 3"x3" canvas thinking that I could stretch the fabric over them and hang them on the wall. Turns out my strips of fabric weren't quite big enough so I needed a plan B. I found this picture on Pinterst and I really liked the concept.


 However my canvass (canvi?) were not as big so I had to adapt. I also did not want to leave the background white for the bedroom so I painted the background blue.
The background turned out to be a little patchy as the only paint I had around the house were some watercolour paints which did not take well to canvas. I did many coats but it never quite evened out. I tell myself that it is artistic flare and makes it look more 'sky-like'.

While the canvas was drying, I cut out the pieces of fabric into leaf shapes. I found the material frayed less and was easier to cut out the fabric after I gave it a coat of modpodge. I also cut out the outline of a bird for the tree.

I then sketched the tree onto the canvas with them placed together and painted the outline. After that was dry, I used the modpodge to put the leaves on the tree and then used modpodge over the top just to make sure they would stay. I added a little paint on the leaves to add some continuity to the branches.

Voila! Bird in tree art.

In hindsight, I would probably have moved the branch the bird was sitting on down a little bit so I could make the bird larger, making it more noticeable but I think it turned out quite well.
The hardest part was trying to hang all the squares with even spacing between the canvass.


So my best friend and I got drunk together last night. It was one of those throwback moments to when we lived together when we just drank and stayed up talking about nothing and everything.

It was one of the best conversations I've had in a long time. I love my partner but he is not good about talking about the deeper meanings of life. He is more of a 'take it as it comes and don't worry about it beforehand' kind of guy which I appreciate but sometimes I need to vent and speculate and talk about the bigger picture. That is what friends are for.

My friend and I talked about life and death and dying and death culture and the reason that everything happens. We skirted around the fact that I may not be alive in a year for her wedding and talked about how life will continue after I die. The best part of the conversation personally was when she told me how much I have meant in her life. I realize that is egotistical sounding but for me, it was incredibly moving to hear.

My grandmother died recently and when I have been reflecting on her life, I've been pondering what is meant to have a legacy. My grammy worked for many years as a nurse and raised five children and has many grandchildren. In my view, her legacy would be her family and her fabulous career. I would not say that her life impacted society in some great shifting way. She did not discover a new cure for a disease or start a revolution but she always had treats waiting when we visited her house. She was a fantastic nurse (so I"ve heard) to many patients and was a loving mother and grandmother to her family. She was known to few people outside of her family or area but I believe she lives on through the memories of her family and those she worked with which would be her legacy. 

I think as a culture, we are focused on what our legacy will be when we die. We like to have something tangible that we can point to and say 'that is my legacy'. Whether it is one's children or career or years spent volunteering or a youtube viral video they once had. For some reason, we all need a greater purpose outside of being a good human being and being kind to one another. It is almost as if anyone who does not have anything tangible to leave behind is seen as a lesser human. I will not probably have any of those things (viral video pending), I simply do not have the time. Sometimes this makes me feel lost, as though I need to be doing something more significant with my time than sitting at home knitting dishcloths or painting another canvas. Part of our society tells us that we are not worthy if we do not have children or a full time job to contribute to the world. That people who stay at home not paying taxes are 'less than'. Logically, I know this is not true. I am able to rationalize outside of that pressure but every once in awhile it gets to me.

I know how fortunate I am compared to millions of people: I have a place to sleep, I have friends and family who love me, I have food on the table, my disability is hidden so I do not get treated different in public, I've traveled, I've been to university (twice!), I had a (very short) fabulous job. I wonder if people who are financially and medically less fortunate as me feel the same way. Do they wonder what their legacy will be? Do they wonder why some members of society and politicians view them as less worthy? Is this just some self-indulgent reflection that I'm feeling as someone from a wealthy developed country?

...back to the conversation with my friend, after pondering these questions with her, she said that my legacy is all the moments I've had with other people. All the times I've influenced someones life or had a meaningful conversation with another person. It will be in how the people I know and love remember me. Then she told me how much I have meant to her and how seeing me just live my life has influenced her life. You may not be able to point to it but my life will have meaning through the way it has changed other people. That will be my legacy.

I think sometimes we do not realize how our interactions can change other people. Or how much we can mean to another person. I wonder if the amazing people people who have impacted my life are aware of it. I really need to start telling those people how appreciate they are before I run out of chances.

I also need to drink another litre of water.

Monday, 20 May 2013

Awkward social settings

So I'm off to my friend's birthday party for the night (this would be a long weekend if I had weekends to consider anymore). I am generally an awkward person in social situations at the best of times but right now I am wondering how do I answer the dreaded "How are you?".

I mean no one really wants to know how you are doing, right? It is just a way to start the conversation or something to say to another person when really you would rather just sit there sipping your beer in silence.

I never know what to say anymore. To my close friends, I can say 'ok' and they really know what I mean. Because they know what is happening. What do I say to the friends who I have not seen in awhile?

I know what to say to complete strangers I say 'great!, how is everything with you?' I will never see these people again and disclosing your personal life to complete strangers makes people not want to sit next to you anymore.

It is the friends of friends who I never know what to say too. I might see these people once or twice a year at a dinner party or someones birthday and I know them enough to know their names, employment, and that they played softball last summer. I don't really know them well enough to talk about personal problems.

So when they say "How are you doing", do I let out a rant about how everything is pretty shitty right now? That I have been off work since February, my lung function had improved but then they went back down when I went to see the doctor early May and she basically told me that I needed a lung transplant in the next year or I was going to die and even with the transplant I would have 5 to 10 years more at best...?

That is probably not a good idea.

But in a few weeks if my friend is talking to them about what is going on, they might wonder why I didn't say anything. So for now, I've decided I just say 'fine' because no one really likes an acquaintance to spill their personal problems to them and also because ranting to people about death is probably not going to get me invite to many more birthday parties. 

Sunday, 19 May 2013


I've decided that my first post will be a rambling of mine about how hard it is to write first posts. I tried to write an intro of sorts but it made no sense to me so I stopped that nonsense.

I need an outlet for my thoughts and this is a good as any. I feel that by the time anyone reads this blog (if anyone ever does), they probably won't start at the beginning so kudos to anyone reading this.

I am going to write about my trying to cope with my health through crafting, baking, and general crazy thoughts. I don't really know what is going to happen with my self yet, re: lung transplant so I feel in a sort of limbo. I will know more after my appointment in July with the big doctors in Toronto. I realize this makes no sense to anyone starting to read this because you know nothing about me so background. I have CF, I may or may not be getting a lung transplant. I have been off work since February and have decided that to cope better with my boredom and general anxieties and possible depression, I should start a blog.

Actually, to be honest, I was skyping with my brother showing him some coasters that I've recently made for some friends and he told me that I should start a blog because 'they looked cool'. I said 'yeah I thought maybe I should do that'. He said 'yes you should, it would give you something to do'. I replied 'yeah ok' and he quickly countered that I would probably never actually do it.

Challenge accepted.