Emotions.

I'm concerned that I am going to become one of those bitter angry sick people. One of the ones who yell at children because they are being too happy. Sometimes on Facebook when people write whinny states about how bad their day is going, I want write snarky messages about how much they have to appreciate and maybe they should think about that for two seconds. But I don't because that would be a sure sign I've become bitter and it would also get me shunned from the Facebook world. Rationally, I know people have bad days and I do not want to dismiss how horrible it feels when you can't find your keys or when you burn you supper or are cramming for exams. I mean I'm sure someone is yelling at me to stop whining about my situation because there is someone in a worse situation than me. Of course there is, there is always a 'worse case scenario'. I'm worried that I am going to lose that perspective.

I guess what is bothering me more is that I get jealous when people talk to me about their plans for next year or five years because I can't help thinking, where will I be in 5 years? Will I be alive in 5 years? Then I feel guilty for thinking those things and feel horrible that instead of celebrating with you, I am making it all about me. I know I mentioned this before and no, I haven't figured out how to crush that little voice inside of me. I am so tired of being stuck in this limbo and unable to see a future beyond a month or two. I can't tell you where I will be in a month, let alone at Christmas, or next summer and my inability to plan for the future is making me envious at everyone who can. I know I need to keep planning for the furture and not let my health stuff stop me but it can get depressing.

I don't want people to stop telling me about their life plans or how about their horrible day because I really do want to hear what you are going through. I just wish I could shut off that bitter part of me that comes creeping up occasionally. I really don't want to be one of those cranky people who hate happiness in other people because they might not have the same thing. How do I make sure that doesn't happen to me? Will someone please slap me if I start becoming that person?

My horrible life decisions have caught up with me.

I, like most  people, enjoy routine. I like having a reason to get up in the morning and something to do during the day. The lack of routine since not working has been the hardest thing for me. For awhile, I was able to motivate myself to get up early-ish each day and find something to do. I would go to the gym in the morning and then go on with my day. However, that motivation and willpower has been zapped from my body.

Now that I haven't been going to the gym and have no other commitments during the day, I have reverted to my early-university habits of staying up incredibly late and sleeping in until noon. I sleep in so late during the day so when I try to go to sleep at a reasonable hour at 10 or 11 (every day I vow I will break the trend), I end up staying awake until 2 or 3 reading because I'm not tired.

As a result, my eating habits have gone down the drain as I eat breakfast at noon and then supper around 6. Sure I have some snacks but it is nowhere near the 2500-3000 calories that I am suppose to be eating. Its crazy that I ate better when I had to get up for work in the morning, as I would eat breakfast, have a snack during break in the morning, eat lunch, have a snack when home from work, and supper. Now I just laze around when I do get up because I can 'eat whenever'. 

My eating and sleeping habits have gotten worse this past 2 weeks because I haven't had any early commitments to get me out of bed. Today it all seemed to catch up with me, apparently the 9 years (its been 9 years!) since my first year of university has made a difference on how horrible sleeping habits affect my body. I've felt really lethargic all day while also being incredibly hungry. My body appears to be in protest and is demanding more sleep and proper hydration/nutrition. I felt a bit better after laying on the couch all afternoon while my partner supportively brought me juice and food. However, I think one day was enough for him as he is threatening that tomorrow he will throw me out of bed if I don't get myself up before 11.   

On the plus side, I managed to finish a dishcloth. 

Housekeeping note

Just a housekeeping note.

I changed the 'comments' so that a pop-up window will appear instead of having it embedded as a thread on the page. There is a bug in firefox that does not let users comment on embedded threads and seeing as mostly everyone uses firefox now, it may have been preventing people from being able to comment. If you try now, you will get a pop-up window which is more annoying but at least it will work. If you haven't tried to comment then ignore this post.

Thanks for all the support everyone!

Stupid Pinterst

Projects on Pinterst never turn out how they are advertised. This time I tried the herring-bone canvas print that I thought looked cool. And it does still look pretty cool as long as you don't look too closely. This was also a lesson for me on learning when to stop tinkering with the project. I taped everything out which took forever then had a lot of fun painting the actual canvas. However, I used watercolours which I found out when I took the tape off, leaked underneath the masking tape. So when I took the tape off the white sections were not as white as I had hoped. I should have just left it as is but the perfectionist in me wanted the white section to be perfectly white. So I dug out my acrylic paint and tried to cover up spots. I was not very successful. It looks messy close-up but from further away it isn't as noticeable. I think I'll hang it over the stairs where it will be impossible for someone to look at it closely.

Looks better from a distance and when the picture is blurry

Lets play the transplant game

Does this feel like a game to anyone else? A weird game that doctors secretly play in some basement somewhere? Lets play 'Who gets a new set of lungs?'!

My doctors have been throwing around the 'lung transplant' words for years. They would ask me if I was ok with them starting the paperwork process, to which I would say sure. Then at the next appointment three months later, they would ask the same question, to which I would reply "I thought you already did that". Then I was explained that my lung function was still slightly too high to be considered for a transplant but that they should get the paperwork ready just in case it drop down suddenly. I wanted to yell at them just to fill out the damn paperwork already!

When I was hospitalized in February, I was pumped full of antibiotics which caused my lung functions to jump up by 10%. This was great and the doctor mentioned that my lung function had improved too much for a transplant but that we should probably go ahead with the process. While she said that I was thinking 'of course you should go ahead with the process, two weeks ago you were panicking that catching a cold would be the death of me and now I'm good to go?". I was so confused. In the end, I was just on a medication high and once they were out of my system, my lung function went back to where it was before hospitalization.

Basically you have to be sick enough to require the transplant but healthy enough to survive the surgery and rehab. You also have to not have anything else wrong with you and you must be the perfect patient in every way. The Halifax doctors basically told me that you can be denied for any reason, too healthy, too sick, having something else wrong with you, not checking your blood sugar levels every day, looking at them the wrong way, etc...

Providing you aren't rejected, you move to Toronto to wait for the surgery and are started on an intense physiotherapy program. I was informed that because of all the exercise, people tend to see an improvement in their lung function causing them too become too healthy for the transplant. Then they have to wait until the lung function drops a bit but of course not too low because then they wouldn't have the ability to survive the surgery.
 
So your in Toronto, on an intense physio program which may make you too 'healthy' for a transplant, then someone has to die who is your blood type and body size, and you have to be the best candidate in the chosen pool of possible recipients. If there are multiple people who would be eligible and who are all around the same level of health, the person who has been waiting the longest gets the lungs. At least next time you will be closer to the top of the list!

You continue to play the 'transplant game' trying to stay in the magical zone between being too healthy and being terminally ill all while trying to be the perfect patient so one day you may one day maybe win a shinny new set of lungs.

I understand now why everyone is on anti-anxiety medication.  

I don't have TB!

I don't have TB! I had the skin test done this week and I didn't react so that is good news. I sent the form off to Toronto but I still don't expect to hear anything from them for another 2-3 weeks. So, I continue to wait.

 Here is a art project that I did based on one I saw online. I'm not thrilled with the results. I'm not sure how the other people managed to cut their pedals so evenly. I guess they are better with scissors than me. The modpodge also made a bit of a shine in certain parts, I think if I go over it again with a coat of modpodge then it would at least be evenly shinny. I'm not really sure what to do.

Why do things never turn out like they do on Pinterst?

 

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'Garden' Update! The first cucumber, it was delicious.

I had a dream I died during a lung transplant

Well, last night I had my first 'transplant' dream. It was terrifying.

I must say that I have incredibly vivid weird dreams every single night so having an uber-realistic dream is not new to me. I also tend to dream about the situations I am currently in. Every summer when I worked at the pool, it would take about a week before I would have my first pool/child drowning dream. When I've started new jobs or internships, I've always noticed when I had my first dream about the job as it meant that it was finally part of my psyche. I don't look for deeper meaning into my crazy dreams other than that they are usually about something I have been trying to process, thinking about a lot, or a book I have been reading. 

So, having a transplant dream is not surprising and I am not looking for deeper meaning other than the fact that it is obviously something I am still processing.

If you want to dig out your dream books and analyze it further, here is how it went (For those who don't care, feel free to skip over this part because I know how boring it is to hear about other people's dreams): I was in a waiting room by myself in a very sterile empty hospital. Everything was a ugly beige, the walls, the seats, and the counter. Then I was wearing a hospital gown laying on one of those white hospital beds being wheeled down the hall by faceless people (people in my dreams never have defined features). All I felt was extreme loneliness and panic that I would never see my partner again and that I never got a chance to tell everyone that I loved them. I was then wheeled into the surgery room which was all very blurry and then someone told me to close my eyes, gave me a sedative, and then I died.

Obviously that was when I woke up in a complete panic and with a very intense feeling of loneliness and loss. I woke up my partner in my panic and told him that I had a horrible death dream and that if I never got the chance again, I hope he knows that I love him. He just rolls with these wake up calls by this point in our relationship so he sighed, told me he loved me too, rolled over, and held me until I calmed down enough to fall back asleep.

Thankfully, my next dream was being at the Long Island Medium's house with my sister and we were trying to sleep but kept getting woken up by various contractors who needed to make sure the supporting beans were still stable. Then we were getting on an airplane but my sister kept getting sick so I stole some crackers from the house to help her stomach. That is the last time I read about the Long Island Medium on Wikipedia before going to bed. 

Tips for talking to people who are going through a tough time

I know there are a lot of lists out there of 'things to say to a friend who is going through a tough time' but I thought I would add my two-cents to the pile. This can apply to anyone who is sick or who is struggling to cope with a new situation in their lives.

1) Say something that acknowledges the problem without trivializing it. 

       "I heard about your (whatever) problems, that must be tough."
       "I heard about your problems, that sucks."
       "Sucks you are going through all that stuff right now."
       "I don't really know what to say but I'm thinking of you."

2) Saying 'let me know if you need anything' is great but some concrete examples can be helpful. It can be hard to ask for help when you aren't sure what the person had in mind. Did they mean they would clean my house or that they would go out for coffee sometime?  
 
       "I make a mean lasagna, how about I bring one over for you?"
       "Here is some wine for us to drink together tonight." 
       "Why don't we try out that new yoga class together next week?"
       "Call me anytime you need to talk, seriously, the middle of the night is fine." 
       "Why don't I babysit the kids next week so you can nap or run errands or get your nails
       done?" (Obviously this does not apply to me)  

3) Try to avoid saying the cliches that tend to ignore the fact that the person is going through something quite significant and personal:

      "Everything happens for a reason."
      "It must be God's will." 
      "God only gives you what he knows you can handle."
      "Everything always works out ok in the end."
      "A friend of a friend of mine knows someone who had the exact same problem as you and 
       everything turned out fine and/or they died." 

(I'm not going to freak out if you say one of these to me but know that I am no longer listening)

4) Maybe you could say something awesome and empowering instead: 
  
       "Do you need to rant? I'm here if you do."
       "You are amazing."
       "I can't imagine what you are going through." 
       "I admire how you are handling (whatever),  it must be so hard."
       "I love you."

5) If you do want to tell your story of the time you went through something horrific too, it helps if you preface it with a disclaimer. No one likes someone telling them how to cope with their situation.

      "I know its not the same but I found that punching the wall seemed to help with my loss."
      "I can't imagine what you are going through but know that you aren't alone in being 
       confused and angry."

6) Understand that the person might be tired of talking about their problems and they might just want to hear the latest story of how your mother-in-law is ruining your life. Don't push for information if they obviously don't want to talk. They may have just spent the last hour trying to explain everything to their grandmother and are exhausted of the topic.


7) Most important of all, just say something. It doesn't matter if you didn't say something when they first started having the problems, they do want to hear from you. The first minute of the conversation will probably be awkward but it will be worth it. It can be incredibly isolating to be ill or going through something tough. Some people would rather avoid the situation because sick or struggling people remind them of their own mortality and the randomness of life. Don't be one of those douchebags. Be there for the person and let them know you love them.

Art by Paint

This was inspired by my years of playing on Paint where I would make a bunch of lines then fill in the sections with different colours. I think that is what every child did on Paint. I also saw a cool picture on Pinterst that made me think it would transfer well to canvas. I took masking tape and taped out the lines then filled in each section with a different colour. I was working with pastels so I melted it a little bit with a hairdryer so it would mix easier into the canvas.  

I like bright colours!

Earthy tones.

Coursera

One of the things I have been doing with my time is trying to learn some new skills to keep my brain active. One of these skills was learning to play guitar. I took guitar in grade 9 for the few weeks in music class that involves learning an instrument but for some strange reason (*ahem* public school's lack of interest in the arts), I never really learned anything. So I thought will all my free time it was time to learn again, and by 'again' I mean learn the first time. 

Enter Coursea. I had heard about their online courses but I never thought about actually doing one until now. I signed up myself and my partner for the 6 weeks "Introduction to Guitar" course. So I dug out my clipboard and some looseleaf, dusted off the guitar we had under the bed, and prepared become the next Gordon Lightfoot (the female version, Gordena Lightfoot). 

Week one and two were quite basic, 'get to know your guitar' and 'how to tune a guitar'. I breezed through it and thought maybe I had learned something in high school after all. Then came week three. The homework involved actually playing the guitar (shocking I know) and upload your playing for peer-review. This was terrifying. I played the same three scales over and over again with the metronome as instructed until I wanted to smash the guitar into the floor (I can only imagine the curses the downstairs neighbour was sending my way). My fingers developed crazy blisters and I became focused on cutting off all my fingernails on my right hand. I actually got pretty good feedback from the assignment. The main complaint was to turn down the metronome as the reviewers couldn't really hear the guitar. Oops.

Week four was about learning basic chords and the theory behind all of the chords. I was following the instructor until he then started lecturing on music theory. He went on and on about tuning your guitar for the group you are playing with and how you can find each note on the guitar and make chords accordingly. I was beyond lost at this point in the theory but I carried on with the practical part and played the chords that were assigned for homework. Really, who needs to know the theory anyway. I just want to be able to play some Dylan. 

Week five was a huge jump in the level of difficulty. That was the moment where I basically gave up on the course. I took one look at the homework and said 'well, that was a good run'. To be fair, I did practice the basic scales that were assigned but I could not play a bar chord that did not sound like death of a hundred animals. For those who do not know the guitar, a 'bar chord' is a chord where you have to dislocate the bones in your fingers in order to be able to maneuver them into place while maintaining iron-man strength in your index finger to hold down the entire row of strings. All while strumming in perfect rhythm. And you figure since you basically broke your fingers playing the chord, maybe you could hold it for a beat or two but no, you must quickly move onto the next note. I couldn't even bring myself to upload anything for peer review because everything sounded like a cat playing the guitar. Not even a cute cat. A cat that has been outside its entire life and has sworn revenge on the eardrums of humans everywhere.

I struggled onto week six and was surprised to see that the homework was a bit easier. It was still too advanced for me but there were only two bar chords in the final song we had to learn instead of being every single chord. Thankfully week six fell on the week when I left for Newfoundland so I did the online quiz and then left the province.

So what did I actually learn? Well, not much. However, it was something that was fun for my partner and I to do together (until week five) and it did force me to learn some new guitar chords. I think the trick to learning the guitar is mostly persistence and practice so any motivation to do so is beneficial. That said, I have not touched the guitar since returning from Newfoundland so I don't think I'll be headlining Massey Hall anytime soon.

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Garden Update: The first pea!

Delicious!

What do you do with your time?

One of the first questions I usually get from people when they hear that I am not working is:
What do you do with all your free time?

For the first month, I was super annoyed when anyone asked me this question (I apologize if I freaked out on you...) and not really sure how to answer it. I felt as though I needed to justify my time as though just being home relaxing and trying to take care of myself was not enough.

However, I also asked myself the same question when I found myself with a whole lot of free time. Initially, I had big plans of researching new therapeutic activities, maybe writing a few papers, anything to stay relevant in the working world. Quickly that became less of a reality and after spending a week watching mindless television, I decided that I needed to do something a bit more personally productive. So I quickly feel into a routing of filling my days with projects that I enjoy and that do not leave me feeling like a zombie at the end of the day.

I began to accept that maybe I wouldn't spend my time writing a ground-breaking paper in my field  and maybe instead I could learn how to knit a toque. I also did some art projects that I had been planning for awhile (as mentioned in previous posts) and my days quickly filled with various activities. Sure, it is not the same as working four days a week and of course I would rather be employed. However, I think I have found a good balance of relaxing like my doctors require and still be able to do activities that I enjoy (yay cycling and camping!).

Even after 5 months of unemployment, I still do not really understand why everyone is fascinated with what I do during the day. I don't recall ever asking someone what they did with all their free time on the weekends or during vacation. I assume that they will be doing mundane activities that they enjoy as I do when I have some leisure time. I think we are so focused as a society for the need to be busy. The need to always be doing something 'productive'. I think the fact that I spend my days doing essentially 'non-productive' activities can be confusing to people. It is a crazy society we have when we feel guilty spending a day reading a book, lounging by the beach, or doing something artistic instead of doing laundry, cleaning the house, or working for 12 hours.

If you are still curious as to what I do during the day, here is what I did today: Slept in until 10, did an hour of aerosol masks/physiotherapy, ate breakfast, finished reading Inferno by Dan Brown, did a load of dishes, had a bath, watched an old SNL episode (thanks Netflix!) while blogging. and now my partner and I are going to play a board game. It is not very exciting. I'm still not really sure what people expect me to say when they ask me that question but I have gotten a lot better (some might say less defensive) at answering it and usually end up just saying that I watch TV all day. Because really, what is more fulfilling in life than watching a season of Fawlty Towers in an afternoon. 

I cooked something new! Hoisin Chicken Lettuce Wraps

So two days after my post about how I have not cooked anything interesting, I actually tried a new recipe. A few of my high school friends had a hang-out/reminisce/gossip session a few days ago which was a great excuse for me to try a new recipe from one of my favorite cookbooks Grazing by Julie Van Rosendaal (*gasp* I actually used a cookbook!).

Here is the actual recipe with the substitutes I made in italics:

Hoisin Chicken Lettuce Wraps 

1 tbsp canola or sesame oil
1 lb skinless, boneless chicken breast, chopped into small strips (I used medium-firm tofu)
2 cups fresh shiitake mushrooms, sliced (4 to 5 mushrooms) (I do not like mushrooms so I used random veggies from the fridge, broccoli, beans, carrots, a few sugar peas)
3 cloves garlic, crushed
1 Tbsp grated fresh ginger
salt and pepper to taste
1 small red pepper, seeded and finely chopped
1/2 can water chestnuts, drained and chopped (optional) (I would definitely use them again)
3 green onions, chopped (I used regular onions as that is what I had around)
1/4 cup hoisin sauce (Super easy to make, I used this recipe)
1/2 large head iceberg lettuce, quartered (I used leafy lettuce from my 'garden', iceberg lettuce has no nutrition in it anyway)

1) Heat the oil in a skillet and cook the chicken over a mediusm-high heat for a few minutes. Add the mushroomms and cook for another minute or two, until they turn golden. Add the garlic, ginger, salt, and pepper and cook a minute more. Add the red pepper, water chestnuts, and green onions. Cook for a minute.

2) Add the hoisin sauce and toss to coat well and heat through. Transfer the chicken mixture to a serving platter and serve along the wedges of iceberg lettuce. To eat, pile some of the mixture onto a lettuce leaf, wrap it up, and eat it like a burrito.

(So I basically chopped the tofu into small bits and fried it up with all the veggies, garlic, ginger, and onions. I tried to add the veggies based on what takes the longest to cook, carrots and broccoli  first, red pepper last. I added the sauce a bit earlier in the process as I find tofu needs time to soak up all the flavors. I also used all the sauce that I made from the other recipe which I'm sure was way more than a 1/4 cup. I think the extra sauce prevented it from being dry)



The wraps went over very well and they were a great addition to our snack/finger food/wine potluck. My partner was the only one who said they would have been better with chicken but he was the only one who saw the actual recipe so he doesn't count. And of course I do not have a picture because I like to have monotonous blog with no visual stimulation. (I need to start channeling my very-hidden-inner Instagram-er and start taking more pictures of food). 

Trying to be the perfect patient.

The oxygen lady (I'm sure that was her name) came to the house yesterday to make sure that everything was working with my oxygen compressor and tanks. She checked my oxygen levels and asked me how often I am using the oxygen. I paused to think about how to phrase that I use it only when exercising or when it is crazy humid despite what it says on her sheet about my needing it every day. She filled the silence by saying 'a bit every day...?' to which I agreed while my partner sat in the background rolling his eyes.

Why do I always do this? Why do I always say what I think they want to hear instead of what I am actually doing?  I know I shouldn't. I know this makes their job harder. I know this makes it more confusing when trying to figure out. Ie - "you say you never miss a dose of your calcium but your levels are showing low so we should double your dosage..." Well, maybe "never missing a dose" wasn't entirely accurate.

So yes, I need to be better at telling the medical professional what is actually happening instead of what would be the ideal. Why do I do this? I have a theory where it is not completely due to my need to be liked by everyone.

The theory: I have been meeting and talking to doctors and other medical people my entire life. I know what they want to hear. I know that the dietitian wants to hear that I eat 3 meals a day with snacks, the physiotherapist wants to hear that I exercise regularly. I could tell you exactly what they will say if I say something otherwise. Telling them what they want to hear prevents me from listening to the same speech about how I need to eat and exercise more. It is my way of trying to make the appointments shorter and to avoid lectures. It is also my way of wanting to be the perfect patient and not wanting them to see me in a 'negative' way.

I'm sure I am not the only person who does this (why yes dentist, I do floss every day) but I am trying to be better at telling people when I am not following their regime. For the professionals, if the patient pauses for a minute to think about the answer, do not automatically fill the silence. I know silence can be scary and awkward but just let the person answer the question on their own time. You making suggestions or filling in the gap will just allow the person to agree with whatever you say which may not be accurate.

In the end, the oxygen lady was pleased with my stats but still gave me the spiel on the benefits of using oxygen every day. So much for avoiding the lecture! Just like with the dentist, I acknowledged she was right, vowed to do things differently, and I'm sure in 2 weeks I will be back to my old habits.

Cooking??

Ummm, isn't there cooking on your blog title? Where are the posts about cooking?

Thank you for asking.

When I started this, I thought I would be cooking a lot of interesting foods that would be fun to share. However, as my partner tends to cook most of the meals, the most interesting thing I have made in awhile were deep-fried Mac N Cheese balls (something like those) and a rhubarb souffle where I mistakenly mixed in corn starch instead of icing sugar (it was as gross as it sounds).

So all in all, not very exciting cooking endeavors to discuss. Hopefully at some point I'll cook something more interesting or even easier would be to just change the name of the blog.

I made a cheesecake and put some blueberries on top as a birthday cake for my partner.

It's so awkward

A few of my friends have told me that they never know if or when they should ask me about my health and transplant process. Since a few people asked, I'm sure that means more people have the same question (that is what the teachers always said).

As in introvert and an awkward person in general, I understand the discomfort. I also do not know what to say to people if they are going through something tough.  I try to avoid those conversations at all possible cost and end up saying something awkward which makes it even more uncomfortable. I am the one who makes the inappropriate joke as a lame attempt to break the ice. So trust me when I say that I get it.

Here is my advice: Please say something. It will probably be uncomfortable and that sucks but if you want to ask more about the situation, please ask. From my perspective, I never know when people are tired of hearing about me rant about my health woes. Honestly, I get tired of hearing people ramble about their health problems (real or imaginary, thanks WebMD, we all have cancer) so in my head everyone is fatigued hearing about my health problems too. I also figure they probably want to talk about something more interesting then the fact that I now diabetes and how depressed that made me because it felt like no matter how much I try I keep having more and more stuff wrong with me and it feels like a losing battle and with diabetes comes circulation problems which can lead to limb amputation and soon I will be legless so boo diabetes. See you are bored already.

But seriously, please don't be afraid to ask me how I'm feeling or coping or if I am absolutely terrified. I might just say 'ok' or 'fine' if I have been talking about it a lot.  However, there will be times when I do want to talk about it more or I want to try to work through the latest thing that is bothering me and I really appreciate knowing that you are there to listen. Honestly, I am uncomfortable bringing it up too.


But really, just say something, anything. I would much rather you say something uncomfortable or make an awkward joke than to avoid me because you are not sure what to say.

Container gardening

I can't believe I haven't talked about my little garden yet. The reason I'm going to give is because I checked 'N/A' on my long-term disability application when they asked about gardening. I was nervous that the person processing the forms were going to somehow find this blog and if I mentioned my 'garden' then I would be rejected. Seeing as they found another reason to reject me, I can freely mention it now.  The more truthful reason for not mentioning it earlier would be that I've been too lazy to find batteries for my camera as I've given up on the iphone camera.

A little background, I love gardening. I have been growing vegetables in containers for a few years now seeing as I was student-living in apartments where there is no land. The one apartment I had with a little land unfortunately had little sunshine on that land so I still put my vegetables in containers on the sunny patio. I started my plants in April or May and after being a bit too zealous with my watering, I went to my mother's house and 'borrowed' some of her plants.

I was very impressed that nothing died while I was in Ontario. I am less impressed with the plants after spending the weekend eating tomatoes and cucumbers from my cousin's plants.  I guess that is the trade off of living in the cooler Maritimes.

Cucumber! Someone please pollinate me!

I enjoy trying new plants. Experiment #1 - Sunberry. 

Experiment #2 - Peanut

Ground Cherries are growing well!

We cannot keep up with the lettuce.

Beans 

Experiment #3 - Melon What are the chances of actually getting fruit?

The containers may not be pretty but they do the job.

Hot peppers. Every time summer I buy a pepper plant and am not impressed with the yield. Every fall I vow that was my last year trying pepper. The next spring I find myself buying another pepper plant at the market. Maybe this will be the year it pays off.

My pathetic attempt to entice the bees to come pollinate my veg plants. A flower gardener I am not.

And that concludes my week in Toronto

Well, I survived the week. I was poked, scanned, had ultrasound wands jammed into my stomach (who knew that an "abdominal ultrasound" meant being jabbed with the wand in and around the ribcage), I met with the transplant team, and I feel like every part of me has been scuitinized to the fullest extent. If there is anything else wrong with me, they are sure to find it.

Overall it was not quite as exhausting as I thought it might be. I was usually done by mid afternoon which left me lots of time to relax, stroll around, and eat at a few of the many many delicious resturants in the area. If I end up moving to Toronto, all my money is going to be spent dining at various resturants.

The interviews with the various professionals (social worker, doctor, physio, etc...) were the most emotionally draining as they wanted to know about every single aspect of my life. "Compare your life now to 3 weeks ago, 6 months ago, a year ago..." Ah! I don't know, I do not reflect on my life often enough to know. Everyone also wanted to know where I needed help in my day to day life. I would mention that my partner tends to cook and we evenly spilt the housework. They would say "oh, so he helps you around the house?". I would respond that he has cooked and cleaned since we started living together so it has not changed that much, I just do things a bit slower than previously. I do not understand why him doing some of the chores means that he is 'helping me'. It is like they think if I were healthy he would sit around while I did all the work because apparently we warped back to 1950. No, we split the chores because we are a couple and that is what couples do. We both take care of the apartment because we both live in it. He is not cleaning to "help me out", he is cleaning and cooking because that is his responsibility as a member of the household. Do you ask the sick men what the women are doing to "help them out around the house?". If the women cooks does that mean she is "helping" or is she mearly just doing part of the housework as a member of the family? Ah! *Deep breath* End of rant.

Moving on, I will find out in a month or so if they found anything and what will be the next step in this crazy process. But for now, I will be spending the rest of the weekend lounging beside and in my cousin's pool with a beer in hand soaking up the very hot Ontario sun.

Scary life decisions

So while I am not approved for the transplant list, I was told today that I need to stop ignoring the fact that in a few weeks I will probably have to make a decision. I will have to decide if I uproot everything and move to Toronto to wait for what could be life-changing surgery or do I choose to do nothing. I know you are thinking it would be crazy not to go for the transplant but before you decide for me, let me outline a few things first.

1) I do not feel sick right now. I realize rationally that I am not healthy and I know I am sick. However, right now I am still able to function day to day, I do not have a cold, and am not in any pain. I am able to enjoy many aspects of life and I am not stuck in the hospital.

2) Just because someone says you will probably die in the next year or so without surgery, doesn't mean that you will. I'm not in complete denial. I know I have horrible lungs, I know I have a supressed immune system. I'm just saying that sometimes people live longer than what was medically expected.

3) There is no guarantee that surgery is going to make everything better. In fact, there is a good chance that surgery will not make everything better. People die in the surgery, they die after the surgery, or they die a year later. These people might have lived if they did not have the surgery. Or they might have died anyway.

4) I am terrified that the years I might gain from the surgery are going to be filled with hospital stays, pain-filled days, and an inability to enjoy life. I do not want to swap the life I have right now with that option. What if instead I could have just lived for a few years in the stable condition I have right now? 

5) Having a lung transplant can increase life expectancy by 4.5 years. That is great. But the numbers are surprisingly not that much different. According to that study,

"After one year, 84% of patients were alive while waiting for a transplant, and an equal percentage were alive after having a transplant. After two years, 67% of those waiting for a transplant were alive, compared with 76% who had a transplant. After five years, 55% of transplant patients were alive."

So the first 2 years make very little difference in survival rate and the article failed to provide any data for those waiting for transplant after 5 years which to me isn't very helpful. I couldn't find the actual study online.

6) People die while they are on the waiting list. I would rather spend my time pre-transplant with my friends and family than in a city far away. I understand logistically why that can not happen but it makes the decision so much harder. Every time anyone asks hypothetically 'what you would do if you thought you might die tomorrow?' I have never heard anyone answer 'move to a new city and wait for something to happen'.

7) There is part of me that wants to be rejected just so I do not have to make a decision. That part of me is going to feel incredibly guilty if I am actually rejected. According to everyone on the Internet (yes Wikipedia = everyone on the Internet), what happens to you in life is a result of what you think is going to happen. I know rationally that is not how life works but I still feel guilty  wanting the easy way out so I do not have to decide.

8) The crazy part is that the easier option is to do the transplant. It is because taking action and feeling proactive is the basis of our medical system. We love to be able to say that we did everything we could for the person when sometimes the best thing to do is nothing at all. (Great article exploring that topic in the elderly but could be applied to anyone with regards to quality of life) Is it worth living a extra year or two longer if I have no quality of life? No would be my answer to that question.

All that said, there is a possibility that the transplant would be perfect, that I would be one of the lucky ones who gets another 10 fabulous years. Who knows. I could live for years without transplant or I could die tomorrow. There is no one who is going to tell me that option A would be better than option B. When I make a decision, I will never know if the one I made was the right one. Unless I am that rare random person who is going strong 20 years post-transplant. But it would be foolish to make a decision based on what happens to the 'lucky ones'.

When did life get so hard?

How much nuclear dye does it take before you turn into a superhero?

Close your eyes (figuratively...unless you can read through you eyelids in which case you probably have better things to do) and picture yourself in a small room, electrodes are taped to your legs, arms, and chest, you have an IV in your arm where you have just been injected with a nuclear radioactive substance and the nurse tells you in a cheerful voice to lay still and just 'breath normal' for the next 9 minutes.

What do you do?

If you are anything like me, you immediately become super aware of your breathing and wonder what 'breathing normally' means. You start taking nice deep breaths, trying to make sure that they are even, thinking that is how you normally breath. You realize you never breath that way so you switch to small shallow breaths to even everything out. Then you quickly discover that breathing that way is depriving your body of precious oxygen so in response you take a few super deep breaths.

Gah, how is it you normally breath?

You begin to panic because you think that maybe the image won't turn out now because of your spoatic breathing patterns. They will have to do the test again and this will throw off your schedule. You will be forced to go get more blood drawn from the mean nurse from Monday who will keep you hostage until she finally gets a sample of your sputum. You will also be injected with more dye which will turn you into a superhero of some sort. Except you will probably end up being a boring superhero that is able to identify the exact colour of wall paint or has the ability to grow their fingernails at super speeds. Hey look, you finally stopped focusing on your breathing.

 The nurse returns to ask how everything is going and you say great because you don't really know what else to say.  As she walks out of the room she reminds you to 'keep on breathing normally'.

Gah!!

Give me your sputum!

Everything is going very well here in Toronto so far. All the tests have been pretty standard and not overly stressful. There has been a lot of waiting around but that is why I brought a book. Our B&B is not flooded and the food around here has been delicious.

The most stressful moment so far was yesterday when I went for my initial work-up (bloodwork, ECG, sputum). The nurse handed me the little cup you are suppose to spit in and told me they needed sputum. I told her that I haven't been producing anything lately so could she just give me a throat swab instead. She told me that wasn't possible and that I needed to go into the bathroom and cough something up. So I gave it my best shot. I coughed for a solid 5 minutes but nothing came up. I returned empty handed and she asked if I had done it right and then 'reminded me' on how to cough stuff up. This was the moment when I wanted to slap her and every other health professional who has ever lectured a patient on the proper way of doing a task that they have done their entire lives. But I didn't. People who slap nurses do not get new lungs. I patiently said that I did my best but I can not produce anything and that there was not much more I could do about it. She then told me that I couldn't eat until I managed to produce something because food would compromise the sample. That was when I blocked her out and went to my happy place. However, she did not notice that her audience was ignoring her and would not let it go. She lectured me on the importance of giving them a sample while she did my ECG and again as I was walking out the door. She made me feel horrible for not being able to cough anything up.

I went back to check the manual to make sure that I had it correct when it said that 'it is ok if you can not produce a sample, many patients are unable to cough anything up.' It did not say that I was not allowed to eat until I gave them something. Thankfully today when the CF nurse asked for a sample too (everyone wants my sputum!) she said it was fine when I told her I have not been producing anything. I told the doctor (who was very nice) about yesterdays ordeals and he was a little horrified and said she must have been on a power-trip and to ignore her. That made me feel better.

Tomorrow I am back at the Toronto General for my Echocardiogram and RNA MUGA where I hope all the nice nurses work.

Caught in a downpour

We made it to Toronto.

It might be possible that I may have had a slight panic attack this morning while getting ready to leave. I basically became super overwhelmed with everything. I know rationally that nothing is different then it was yesterday, every time I have to do something concrete that deals with the transplant, I freak out a little inside (and out). It is fine when it is an abstract concept (in a week you will go to Toronto) but every little step closer to the transplant makes me super bummed and I want to run away. Obviously I did not run away as I'm sitting here in my B&B but I either need to just accept the fact that I am going to freak out anytime I have to do anything or figure out a way to not get so overwhelmed. So far my coping mechanism has been to freak out and then try to find something to distract me until I either work through the emotions or have a private place to freak out again. I am just making sure the psychiatrist will have something to do so he won't lose his job (see, I'm a job creator). Watching a guy at the Moncton airport try to find his bag after he left it unattended was a good distraction this morning (he did get it back, the café worker had turned it into security who disappointingly did not blow it up).

 On a more pleasant side, I had 3 pretty awesome moments today:

1) The Air Canada flight from Montreal to the Toronto Island airport is amazing. Ok amazing might be pushing it but compared to the other flight, it was much better. They serve chips, chocolate bars, drinks, and wine (for free!). There was even a little bit of leg room and you are super close to the city. I have pretty low expectations for airlines and being fed chips surpassed those expectations.

2) The street car we were on kicked everyone off during a crazy downpour due to 'maintenance problems' (not awesome) but when we were standing outside of the shelter because it was full of street car people, 2 different people let us share their umbrellas. One of these people actually opened his umbrella up (he was under the shelter) and proceeded to hold it for me for at least 10 minutes. Thank you kind sir. I send some good karma your way.

3) The B&B turned out to be as good/maybe better as it appeared to be on Tripadvisor. They have Scrabble and loads of books and movies which I'm sure we will be taking full advantage of over the next few days.

So Hot

I'm not one to normally complain about weather but holy crap is it hot and humid outside. My lungs are not pleased when I try to do something like 'walk up the stairs' or...who am I kidding, I haven't done anything in the past 2 days besides eat a ridiculous amount of Popsicles (Note to self, if LTD ever comes through, invest in Popsicles). There is a slight possibility that I have been replaced with a cranky sweating doppelganger who freaks out whenever her partner asks if she needs anything. 

The crayons are melting themselves to the canvas.

Why yes, I think I might have a pre-existing condition

Well, I've been officially rejected for long-term disability benefits. I figured I would be as they have a clause in the contract saying that if you work for them less then a year, you can not be off work due to a pre-existing condition. It still sucks to hear.

The guy whose horrible job it is to inform people them they have been rejected called me to confirm that I was off work because of my CF. I tried to explain that it was a lung infection and that my condition had been stable when I started the job (minus the odd pneumonia), that I did not expect to have to go off work after only 8 month and that I had a sudden deterioration. The decline in heath is obviously caused by CF so he read me the pre- scripted letter of how sorry he was but that I was being rejected at this time.

He told me that the best thing to do would be to return to work until November (being a year from the time I was eligible for LTD), go off work then,  and re-apply. I told him that I am going through the lung transplant process so I'm pretty sure my doctors would not approve of me working. He asked if I could work until my transplant happened. This is when I wanted to scream into the phone that if I could work, I wouldn't need a transplant, and that one does not simply walk into a hospital one day, get a new set of lungs, and return to work by Monday. Do you know how many hoops I have to jump through to even get on the transplant list?! Arg!!

Trust me long-term disability people, this is not a scam I have. I do not start a job, work for awhile, call up my doctor buddies and get some letters forged then wait for the money to start pouring in while I sit back and laugh. Is that why there is a pre-existing condition clause for under a year employment? Do you think people really do that? I think either you are paranoid or you simply do not want to let go of the money people pay into the system. Can I please at least have back the money I paid you while I was working?

I called the benefits people today to see what my next option would be and I have to wait for my rejection letter and then appeal the decision before I can apply for Canadian Disability. What a crazy system.

Give me some oxygen for your plane...please...pretty please...

Last year before I traveled, my doctor tested the blood from my wrist (not a painless place to have a needle jabbed into you) to see my oxygen levels. I learned then that the oxygen levels in airplanes is lower than real air so people can have difficulties breathing once the plane takes off. Thankfully then my levels were ok and I have not flown since.

With this trip to Toronto, I assumed my doctor would check my levels again but she spared me the pain (literally!) by declaring that 'of course' I needed oxygen for the flight (I enjoy my world of denial). So I booked my flight last week, checked the 'special accommodation' box, read that I needed to contact them 48 hours before flying to remind them that I require oxygen, and then continued about my life for several days. I then emailed the CF coordinator to see if a doctor would write me a note for the oxygen assuming I would need some documentation when I went to check-in. The CF coordinator emailed me back saying there was a form on the Air Canada website that needed filled out and that could I bring it in by Wednesday as the doctor is on vacation until Thursday. I felt foolish thinking that I could just have a doctor write a note.

So I printed off the forms and where it says 'flight' and 'flight number', they only provided 2 lines to write anything. So that got me thinking that maybe there had to be two different forms filled out for the departure and arriving flights. That made no sense to me, but seeing as the only affordable flights involve a lay-over, you think if they wanted each stop written down separately, they would provide more lines on their form.

Confused, I decided that maybe I should call the number they provided to clarify. After pressing 1 for English, I learned that while no, they do not require a separate form for each flight, they do require more than 48 hours notice for oxygen. Incredibly confused, I stated that the website said 48 hours and it is more then 48 hours so why would you say 48 hours if you need more time? She replied dismissively that 'they require 48 hours to get the oxygen to the airport and they have a physician who needs to approve and order it but he needs to receive the doctors forms first so obviously you need to provide them with more time you silly girl.'  Oh of course. Obviously I should have known better. Sorry, I was only getting my information from your website.

Eventually, she resigned to the fact that there was no possible way I was going to travel back in time just for some forms that needed to be sent in a few days ago and that maybe having the doctor fill them out on Thursday would be enough time to get some oxygen on the plane for Sunday (seriously, aren't you an airline? Instead of using Canada Post [definitely a made-up fact] maybe you could just use your own massive airplanes to ship the thing?).

I dropped the forms off to the doctor yesterday and she must have filled them out because I got a call from the airline today to say that everything has been approved and can they please have a credit card number (they could provide them for free if they stopped using Canada Post). So it looks like I will be styling with my nasal prongs on Sunday after all.

I melted some crayons and called it art.

Here is some abstract art that I made with some melted crayons. I melted the crayons with a hairdryer and had fun heating and reheating the crayons on the canvas to make fun patterns. It also made a fun mess all over the apartment floor.

How to get a cab in St. Pierre

One of the benefits of having CF is that most people don't notice until you have to walk anywhere or they are close enough to hear your crackly breathing. Even then, they just assume you are a smoker or have a cold and will ofter you a sticky cough drop from their pocket (thank you stranger for the gesture but it is kind of gross). 

While traveling through Newfoundland,  my sister and I went on a whale-watching/iceberg tour in St. Anthony. It was a lot of fun and there happened to be a man with a visual impairment on the boat with us. We had seen the man at the restaurant we ate at the night before and he was definitely not letting his disability keep him from enjoying his food or iceberg martini. I respect that man so much for not letting his disability prevent him from doing the things he loves. Sure, he couldn't see the whales or icebergs, but his partner described everything to him and he could feel the sea and hear the whales. 

Whale + Iceberg = Awesome!

The man made me ashamed that I had been ashamed to wear my oxygen on a little hike. While I'm not putting wearing oxygen and being visually impaired on the same level of unfortunate-things-that-can-happen-to-you-in-life, this man decided that it wasn't going to stop him from experiencing life or taking sweet vacations. He didn't care if people wondered why a visually impaired man was going whale watching (maybe he internally did but he didn't externally seem to care). I need to be more like that man.

The con of people not noticing your disability is that people make assumptions on your abilities. 

When we arrived at St. Pierre from the ferry, we immediately went to the tourist information to get a map and some information of what there was to do on the island. We already had planned on taking a taxi to our B&B as it was up the hill outside of the main touristy area. As the ferry is pedestrian only, we had kind of assumed that there would be cabs waiting when we got off the ferry to take people to their hotels. We should know better by now to assume anything when traveling to new places (ask me sometime about the night we spent with a random Italian family somewhere in Tuscany). We asked the guy at the information place where we could get a cab. He proceeded to tell us that 'young healthy girls like you can walk there no problem!' and then outlined on the map the route to take. Our french was not strong enough to fight with young french men so we went to the bank to get Euros and then went back to the tourist place hoping he was gone. We eventually found a nice women who called us a cab but after asking several times if we were sure we didn't just want to walk. My sister wanted very much to mention that I was actually carrying a tank of oxygen with me to help my breathing, so no, we would not like to walk. However, arguing in your second language is really really hard to do (we would not make good immigrants). We eventually got a cab and the first minute I wondered if maybe we could have walked after all. The second minute I was very happy we were in a cab as the hill suddenly got crazy steep. It was a short distance but it was worth not struggling up.

View from the top

While it is frustrating to have people make assumptions about our health when they see us - I think it is because we are thin and people equate thin with healthy (that is a whole other topic I could rant about) - it must be equally frustrating for someone with a visible disability to have people make assumptions about their perceived lack of abilities.  

I think the lesson is not to judge people's capabilities based on appearance and if they ask you to call them a cab, just shut your mouth and call the cab.

Q & A: Visit to Toronto

A lot of people have been asking me about my visit to Toronto next week so I thought I would set everything straight the best I can with a Q & A:

Q: Why are you going to Toronto?

A: I am going to do my initial assessment with the transplant team at the Toronto General Hospital and the St. Micheals Hospital in Toronto  to see if I qualify for a lung transplant. 

Q: What are you doing when you are there?

A: Specifically: blood work, endurance tests, stomach ultrasound, meetings with team to discuss my feelings, xrays, and a slew of other tests that involve being injected with radioactive dyes and put under cancer causing machines. 

Q: I thought you already did all of those tests. Isn't that what you have been doing since being off work in Feb?

A: Well yes, but they have to make sure there are no surprises. 

Q: Who is paying for the trip?

A: Thankfully, because I am a NS resident, NS will cover the return flight and accommodations (up to a certain amount, no Hilton for me) for myself and a 'support person'. Everything else is out of pocket. This is significantly better then NB which pays for nothing (Hey NB, if you supported your residents then maybe we would stay!)

Q: Is your partner going with you?

A: Yes 

Q: So after this, you are definitely on the transplant list?

A: No, there is no way of knowing whether I will be accepted after these tests. They will let me know 3-4 weeks after the visit.

Q: What happens if you are accepted?

A: Then I have to move to within a 2 hour commute from the Toronto General Hospital  and wait for someone my size and blood-type to die in an organ-saving way (sign those donor cards people!).

Q: Can't they just do that here? Why do you have to move to Toronto?

A: Canada has 5 places where they do lung transplants and rehabilitation and the Maritimes is not one of them. (Montreal, Toronto, Edmonton, Winnipeg, and Vancouver)

Q: How long do you have to live in Toronto?

A: It is hard to say, most people are on the list for 8 months to a year before they are accepted. After transplant, there is guaranteed 3-4 months of intense rehabilitation before you can return home. Best case scenario: A year and half. Worst case: People can spend years in Toronto post-surgery trying to have their new lungs stabilize. 

Q: OK, best case scenario, home in a year and half. Great! Then you don't have CF anymore right?

A: Well yes, my lungs would no longer have the CF gene but the rest of me still would. I would have to continue taking my digestive enzymes and vitamins because they aren't doing gene therapies yet. However, I would be on a host of new transplant medications which have their own crazy side-effects and problems.

Q: What are the chances for a successful transplant?

A: The numbers I have been told are: 90% survival rate immediately post-surgery; 80% survival rate for the first year; 50% survival rate for the first 5 years; and 40% for the first 10 years.

Q: Gah! How do they know if you will be a good candidate?

A: There is no way of really knowing. Bad candidates are people who are: overweight or underweight, smokers, those with cepacia, and the elderly. Other than that, there was nothing anyone could tell me that would be helpful in knowing if a transplant would be successful. 

Q: Nervous?

A: Nervous and scared and terrified and any other emotion you can imagine. I'm also thankful that something is actually happening (waiting sucks!) and that I'll soon know for certain whether I will be accepted for transplant.

If you want to read more fun facts go to the CF Foundation website where they have their own very wordy Q&A. 

Happy Canada Day!

Happy Canada Day! We went to Pugwash today and watched the parade and stayed for their festival. There were dancers, bagpipers, and big men in kilts throwing weights down a field. It was all very exciting. The sun came out for the late afternoon when we went to a friend's cottage to walk in the water and play games of washers (I am officially the worst at tossing washers into wooden boxes). All in all, a great day.

I only wish I could stop the voice in the back of my head from saying 'Is this going to be your last Canada Day?' or ' Do you think you'll be stuck in a Toronto hospital this time next year?' or 'Should have gone to Ottawa for Canada Day when you had the chance'. This voice tends to be more prevalent during annual milestones (birthdays, holidays, etc) as well as when friends discuss future events (weddings, concerts, babies, etc). I know no one has a guarantee of a future but I hate sometimes knowing that I might not have much of one left.

To be fair and less depressing, I have taken some risks and chances in my life that I might have otherwise not taken because I knew that if I pass it up, I might not get the chance again. Not to say that I have taken every opportunity that life has thrown my way but I do try to say 'yes' to as many as possible. I also like to think that I get less stressed about minor inconveniences in life because of this perspective (do not try to confirm this with my partner).

All in all, I have to accept that there are some circumstances you can not change. Maybe in the end, it is better to know what the circumstances are rather than assume you are guaranteed 82 or 78 years of life (Canadian women vs men). It would be horrible to discover one day that the years you had set aside for when you would 'start living and finding meaning in life' are no longer a possibility. I think that would be much worse. Lesson of Canada Day: Appreciate the present and be meaningful with your time!

I'll let you know when I figure out how to turn off that nagging voice in the back of my mind.