Saturday, 30 May 2015

Couch to 5km....?

I decided today was the day to try to see if I can manage jogging. I've been wanting to try it for months but first I had to wait for my legs to stop being in pain all the time. Today it was finally time, I decided to bite the bullet and try to see if I could last longer than a slow jog across the street.

My timing was probably not the best as I decided to try the experimental jog after already spending the morning at the gym but I figured I wasn't going to last long so I may as well try when I was motivated. I downloaded a few running apps and laced up my sneakers, only for it to downpour as soon as I walked out the door. 

So I headed to the gym, which in hindsight, I think was a good way to start. Initally, I thought being outside would be easier as I wouldn't need to figure out treadmill speeds and could just go as I felt. But once trying it on the treadmill, it felt like a better system as it meant I couldn't sprint for the first few times (or jog quickly, in my case), and had to walk slowly during the 'walk' sessions. Being on a treadmill is also easier than outside so that also worked out in my favour.

I looked up a ton of 'Couch to 5Km' plans (also known as C25KM to the cool kids) and figured I should start slightly lower than they suggested for the run/walk segments for day 1. I started with 30 seconds jogging times with a minute and half walk (which is way shorter than every single walk to run plan) just to see if I could last 30 seconds.

I managed that for 10 minutes and upped it to jogging for one minute with two minute walking intervals (the time the plans start at) for another 10 minutes. My legs were somehow not dead after that so I decided to completely over-do it and managed a final 10 minutes with jogging for 45 seconds with 1 min and 15 seconds of walking breaks.

It felt amazing. Of course my legs were burning at the end but even that felt wonderful. It's still so wonderful to me that I'm capable of doing things like this that I just want to keep pushing my limits. I felt completely overwhelmed during the first 10 minute segment that I may have burst into tears of happiness. That really cinched my position as a cool kid at the gym.

So I guess I'm now going to try the whole "couch to 5km" plan. I found one app that I like that gives the "walk now" and "run now" alerts and can be set for custom run/walk times. I don't have a end date goal but seeing as most plans are for 6 or 9 weeks, I will probably be going for the longer time frame. I'll see if I can walk tomorrow and take it from there. I really don't want to overwhelm my knees and injure myself. If it ends up taking longer than 9 weeks, that's ok. Although I may sign up for a 5km in August just to give myself something fun to work toward. Yay jogging!

Friday, 29 May 2015

End of a chapter. Also, pictures of pottery.

My pottery class is over. Boo! I'll still probably go to a few drop in classes in June but my three hour class, no waiting in line days are over. I'm going to try and time it so that I can have pieces ready for the end of June but it's not a big deal if they aren't as someone from my class offered to pick up and hold anything for me. 

It's sad that pottery is over, not just because I always have more ideas of fun objects to make, but because it's like the end of a chapter in my life. A chapter that I'm clearly pleased is closing but this is the one area that I'll miss. I'm going to be hunting for a studio back in Cumberland County where I can play with clay.

Taking pottery classes was one of the best decisions I've ever made. It's probably my recreation therapy training coming out here but I can honestly say that taking the classes was like medicine for my mental health. It kept me focused on something other than the long wait. In fact, when I was signed up for a class, I was okay with not getting the call during those 8 weeks as doing so would've interrupted my pottery.

I spent a lot of time between classes looking up ideas, watching how-to videos, and dreaming of glaze combinations. Having a weekly commitment outside of the hospital was also a huge bonus. I could talk to people about non-medical topics, it didn't feel like all the small talk I did was medically focused. Whereas at physio, all everyone talked about was their health or someone elses health. That's fine for a few minutes but gets old for me pretty quickly. Lastly, working with the clay probably also helped my somewhat physically.

I'm so thankful I convinced Amy to go to a drop in class with me when she first visited a year and half ago when I completely fell in love with it. There is something about getting your hands dirty and being creative that is incredibly therapeutic. Hurry for recreation as therapy!

The bowl is red for now but post-kiln it should be yellow!
My garlic press vase, post-kiln the green will turn clear and it should be red underneath. *fingers crossed*

Wednesday, 27 May 2015

Doors Open Toronto

One of the things that will be hard to give up when moving back to NS, are the never ending activities happening around the city. Last weekend was Doors Open Toronto (part of Doors Open Ontario), we went to city hall to see the mayors office, council chambers, visited old city hall (now a courthouse), a separate courthouse/law building, the TIFF movie archives, the old exchange building, and a church. Oh, and the fort across the street. It was all very cool to see the behind the scenes buildings. There were a million more places we could've visited but we didn't want to wait in line for them and I was tired after all the walking.

We also happened across the film set of the Suicide Squad which is taking over the city. They've shut down younge street for several nights this week and are closing several other roads for their action montages. I hope the movie studio is paying the city well because it's annoying anyone who has to drive anywhere downtown.
St. Andrews church. Their "Wine, Cheeses, and Jesus" weekly group sounded quite interesting.
Action! We didn't see any actors, only a wedding party taking pictures by the set. We couldn't tell if it was an actual wedding party who really like supervillains or part of the movie.
The old exchange building. It resembled a school gym.
The law library at the courthouse. If the books weren't all super boring law books, I may have never left.
Judge Watson.
Art work at city hall.
Where the mayor hangs out to gaze upon his subjects.
A better view for gazing.
Where the councilors get into brawls.
Our apt is under attack!

Tuesday, 26 May 2015

6 month assessment results.

It's my 6 month lungiversary and I survived my bronch! I'll even admit that this bronch wasn't horrible. It wasn't pleasant but it didn't fill me with the 'I'm chocking and about to die' sensation that the other ones have. My chart was also prepped with a comment about my near faints the last two times so they kept me longer and sent me off in a wheelchair just to be extra safe. I stuffed my face as soon as I got home and am looking forward to a early bedtime.

My appointments yesterday all went fairly smoothly. I thought I might have time to knit for a bit while waiting but everything seemed to take forever because the computers were running slow in the entire hospital. No one can function without their computer systems anymore.

Here's a brief summary:

Pfts: My lung function was about the same as two weeks ago. I had to do the full workup which took about a hour and half. Afterward, my lungs felt as though I had been through an intense workout. Pretty much because they had. The respirologist also did a test where she gave me four puffs of Ventolin and tested my fev1 afterward to see if they increased with the medication. They did not and only made me feel super shaky and send my heart rate soaring.

My fev1 lung function seems to have plateaued at around 1.7 at the hospital and 1.8 at home which is roughly 55% the predicted amount. I asked my coordinator if I should expect this to now be my permanent number or if it would increase a bit more. She said that everyone is different but some people take at least a year to reach their max lung function as the body is still healing during that time. So there is still hope that it may increase during the next six months.

X-ray/Ct-scan: These were both clear. No issues. Yay!

6 min walk test: I crushed my pre-transplant best. Double Yay! I made it 628m (pre-transplant best of 585m) which is pretty good even with almost being taken out by a guy in a wheelchair trying to get into the bathroom. My hamstrings were on fire about halfway through even with all the exercising I've been doing. Seeing as my walk test 3 months ago was 437m, an improvement of almost 200m in three months is pretty good. The physiotherapist told me to not be disappointed if it's lower at my 9 month assessment but, let's be realistic, of course I would be. Onward and upward!

Blood work: Most of my blood work looked fine, my anti-rejection meds have finally come up to the therapeutic level. Hurray! Let's hope they actually stay up there. The big surprise is that my cholesterol levels are double the normal amounts. It seemed completely random until the doctor informed me that it may be a side effect from the drugs. He's giving me until my next assessment to see if I can lower it through food or else I need to go on the lower-cholesterol pills. Less cheese, dairy, and red meat? Noooooo.

Wound: My wound is pratically closed. The doctor recommended the dressing continue for another week to protect the sensitive new skin and then no more dressing changes. Yipee!

Clinic: Everything was straight forward at clinic. I got a bunch of letters to give various health professionals when I return back to the Maritimes. I was told that everything looks on track for leaving at the end of June. I'll continue with weekly blood work to make sure my anti-rejection levels stay stable even though most people at the 6 month mark only need blood work monthly. Ah well. Best not mess around with medication levels.

PICC line: It should be coming out come as soon as I get a negative results from my bronch biopsys. Which I will of course get, right? Fingers crossed. I want it out so I can a) shower without saran wrap around my arm and b) go swimming.

One month left to explore the city!

Sunday, 24 May 2015

Six Month Assessment.

Six months ago today, I got the call for the transplant. Well, rather the nurses got the call and informed me. Two days later the transplant happened.

This means that my six month assessment is happening tomorrow with my bronchoscopy taking place on Tuesday. I'm clearly nervous about the appointment for whatever reason as last night I had horrible dreams about forgetting to fast for my blood work, taking my meds immediately before my bronch, and not making it to any appointments. Clearly my subconscious is trying to work through some stuff.

I will admit that I'm not looking forward to Tuesday's bronch. And by 'not looking forward to,' I mean 'am absolutely terrified about' this upcoming bronch. The nurse and doctor reassure me that my lung function is doing well and my weight is higher so they can pump up the meds a bit more. However, that's what they said last time and it was just has horrible so I don't have much hope.

My goal is to not almost faint in the changing room after the procedure like I have the last two times. It's like as soon as I walk any distance, my body decides it's had enough torture for one day. I guess that's why they won't let you leave without someone responsible to take you home.

Once I have all the tests over with, as long as everything comes back negative, I should be cleared to leave the province. We've given our notice on the apartment for the end of June and now just need to find somewhere to live back in NS.

Friday, 22 May 2015

Something not death related: pottery!

One more class. Argh!! I had a million ideas for last Wednesday's class and managed to get four of them done. My two wheel vases from last week came back okay so there will be a marathon glazing session next class. Realistically, I may have to go to a few drop-ins to get it all glazed. A sad discovery was that my weird hand-built vase cracked. Boo! I think the wall was too thin where I connected it. I know these things happen but it's still disappointing.

Another vase with my squiggly stamp!
I made another garlic press vase as I gave my other one away despite loving it so much.

Thursday, 21 May 2015

Book discussion: Smoke Gets in Your Eyes.

Over the weekend I finished a book by my favourite mortician (ok, the only mortician I follow) who does the Ask the Mortician videos, Caitlin Doughty. Her book is called Smoke Gets in Your Eyes: And Other Lessons from the Crematory and is as blunt and straightforward as the videos.

I must say, while I enjoyed the book, I think youtube videos and long-form essays are more of her forte. The book was something like an autobiography with some discussion of death rituals and description/critique of the modern death industry. It was a bit all over the place and I wish there was more about the death rituals from different cultures and less about her failed romance whose inclusion in the book made no sense.

The plus side is much like the Ask a Mortician videos, it didn't hold anything back and explains very honestly how cremation, embalming, and all other death related activities work. Stuff that we should be talking about more but don't because no one likes to talk about death. I did learn that embalmers sometimes have to resort to superglue to keep peoples' mouths closed during a viewing if the person doesn't have strong enough gums to hold the wiring in place.

If you didn't like that fun fact, you probably shouldn't read this book. It can get quite heavy despite the fairly humorous tone (not literally, it's a short book) and I found I could only read a chapter or two at a time before having to switch to a light silly romance book. There was quite the disparity reading about how babies are cremated to about a woman trying to find herself in the woods and meeting Mr. Right.

I noticed while reading the book that I haven't been searching for death related material as much as I did pre-transplant. It's probably because my death no longer seems as emanate so it's not something I think about as much overall. Or possibly it's because I got a lot of my death-related issues out of the way pre-transplant and considering how close I came, feel more at peace about the idea of dying. As weird as it sounds, learning how a body decomposes and all the other random facts, really helped me come to terms with dying. That said, I'm still fascinated by death rituals and the things the funeral industry sometimes does to hide the reality of death.

I think the best and most universal part of the book was at the end (if you don't think you can handle reading the book, maybe just read the last chapter of the book at the book store sometime) when she discussed death denial in our culture. She argued that while most of us want to live forever, death is often the reason for a lot of creativity and is a motivator for a lot of our actions.

Regarding accepting death, Doughty says:
"Accepting death doesn't mean you won't be devastated when someone you love dies. It means you will be able to focus your grief, unburdened by bigger existential questions like 'why do people die?' and 'why is this happening to me?' Death isn't happening to you. Death is happening to all of us. A culture that denies death is a barrier to achieving a good death." 
She continues on but you get the idea. The only way we can get to a point where talking about death and dying is no longer taboo, is to accept our own mortality and not live in denial about the fact that we will all one day die. A good death would be one that celebrates life while grieving passing. One that doesn't try to deny that it happens but embraces that it's as natural as birth and deserves the same amount of respect and dignity.

Tuesday, 19 May 2015

Ottawa Pics.

We made it back from our long weekend adventure! I had a bit of a sore throat all weekend that I hope isn't going to turn into something worse. My blood work tomorrow should show if my body is fighting anything.

I was a bit nervous on Friday being away from the city encase I got a call saying to return to the hospital for anything. Thankfully, the only call I got was a friendly reminder to take my digestive enzymes with my anti-rejection meds (I already do), as they don't seem to be absorbing as much as predicted and I guess they don't want to make my dosage too high. They mentioned switching it to a lower dose but three times a day which might help but will be more annoying for me. Stupid digestive tract. A reminder that I still very much have cystic fibrosis even if my lungs are much healthier now.

Ottawa was really fun, I hadn't been there since I was a child and Isaiah had never visited so we did all the classic touristy things, ate delicious food, beat people at trivia, and spent evenings playing boardgames. All in all, a fantastic weekend.
Our feline host for the weekend.
Tulips everywhere!
Nature Museum
Pigeon skeleton at the Inside-Out Animals Bodies exhibit.
Waterfall at the MacKenzie King Estate. The hike was part of my exercise for the weekend. I should've guessed that a trail to a waterfall would be mostly a hill.
King loved putting ruins on his lawn.
He also picked up this piece of wall from Hitlers bunker after the war.
Classic Ottawa.
The unicorn is kind of terrifying.
But not as terrifying as the spider art.
Gelato sundae to cool down from the heat/humidity.

Thursday, 14 May 2015

Road trip!

We're off on a road trip to Ottawa. Yay for leaving the two hour perimeter of Toronto and a long weekend! I thought I would have less medical stuff to take with me as I no longer have to pack a aerosol machine but it seems that has been replaced by all my morning testing stuff and wound care supplies. Ah well. Yay road trip!!


I only have two weeks left at pottery. Boo! I spent last night on the wheel but it was not my night. I couldn't seem to center anything so I only managed to make two wobbly vase-type things and a wobbly plate.

I did get back the Dr. Who stuff and they turned out amazing! I love the scarf mug and the cyberman mug is way more adorable than a cyberman should be. Ah well. After pottery, I spent the night thinking up pieces to make next week. Of course now I have way too many ideas for a three hour class. It's hilarious to think that the first week I was wondering what to do.

Plate with underglaze!
Gravy boat-type thing.
Dr. Who scarf mug!
Cyberman mug.
We now have a Dr. Who tea set!
All my cream and sugar dishes!

Tuesday, 12 May 2015

A month of self-motivated exercising.

I'm into my fourth week of exercising on my own and my motivation is remaining high which is fantastic. As well as going to the gym, I've been out cycling a bit more. Last Thursday I cycled out to my cousins in Oakville for some pizza and returned home via GO Train. 40 km, woohoo! It wasn't easy, at one point I called Isaiah almost in tears to see how far I had left as I wasn't sure I was going to make it up another hill. Riding a heavy 5-speed bike from the 80s is not the ideal situation.
1/4 of the way to Oakville!
1/2 of the way to Oakville!
GO train home. It was the faster option.
On Sunday, Isaiah and I went to Tommy Thompson park after making sure it was actually open this time. We joined the bird watchers and intense cyclists out to the lighthouse and around the lagoons. There were a gross amount of seagulls hanging out on one side of the park. It's a miracle we didn't get pooped on. The view is suppose to be fantastic of the city as the park is behind the islands but it was such a smoggy day that we couldn't see much. I coughed a bit more than usual and I think it was because of the air quality. Another reason to be excited about returning to the Maritimes.
The end of the park!
There is a city somewhere under all that smog.
I have managed to get into a kind of routine at the gym around the weights but every time I see some of the intense women doing weights, I feel like I should be doing more. It's hard not to compare myself to all the people around me. It's quite motivating that maybe one day I'll be the one sprinting backwards on the elliptical (ok, probably not) or doing squats with the barbell.

I'm able to manage a quick jog across the road but I haven't tried anything more than that as my legs seem to always be in some type of pain (currently, it's my kneecap area). At least I'm able to do that movement again, it was lost for a long time. I hope that soon I'll wake up without leg pain and will be able to go to the park and see if I can run for 30 second intervals.

Sunday, 10 May 2015

Halfway through pottery

I can't believe I'm almost on week 6 of pottery. Where has all the time gone!? I have spent the last two weeks glazing, this week I'll be able to start making new stuff again. I got back a ton of pieces last week and had to worry about dropping them all on the bus. I really like how everything turned out.

Waiting for the kiln..

Everything from the first 4 weeks!

Saturday, 9 May 2015

Thank you letter

One thing I've been putting off doing since my transplant is write a letter to the donor family. It's a completely optional service that the Triiliam Gift of Life Network provides for the donor and donor family.

According to the pamphlet I was given, the Human Tissue Gift Act requires that everything remain confidential so I can't include my name or any identifying qualifications, nor will I receive any identifiers if the family wishes to contact me.

The letter is suggested as a way to thank the family but every time I've started to write something, I get tripped up. A thank you note seems insufficient. Plus, isn't it weird that I'm thanking them for having someone in their family die? I know it's meant more to thank them for their decision, but I struggle with that as well because in my head I'm screaming "Of course they choose that their loved one would be a donor because that's what should have to happen!!!!"

On the non-selfish side of me that isn't trying to get out of writing the letter, I'm sure the family would enjoy hearing that their decision has changed my life for the better. If I was in their place, I think I would like to know. I'm just struggling to know where to start. "Dear family, I'm doing great. Thanks." seems so impersonal but if I start writing too much, when will I stop?

How do I express how completely overwhelmed I sometimes feel by everything that's happened? That I was able to cycle for 40 km on Thursday or that I could walk up a hill without having a coughing attack? Or that I no longer have to sleep on a stack of pillows to avoid waking up in the middle of the night coughing or struggling to breath? The changes that have happened are endless that my letter could ramble on and on. Of course it hasn't yet because I'm struggling to write anything more than "thank you."

I've really put this off long enough and need to get on it. Although the pamphlet does say it's encouraged to do it within the first year so maybe I can put this off and in 6 months I'll know exactly what to say.

Wednesday, 6 May 2015

High Park

I know, I've been slacking a bit with the blog. The weather has just been so wonderful and the terrace is now open so I've been spending a lot of time outside. Yesterday, Isaiah and I visited High Park to look at the cherry blossoms. I've been adamantly checking the tracking website to see when they would be at 'peak bloom' and while yesterday the website claimed it was still a day away, everything looked in bloom to me. 

We went super early (because I can't sleep in anymore), which was good because even on a cloudy Tuesday morning, a day or two before 'peak bloom,' it was crazy busy by the time we left. This weekend will be chaos. Stay away or go early!

We also hiked around a bit in the non-blossom areas and visited the little zoo again. The peacocks were definitely feeling spring love and competing for the affection of the peahen who seemed to have zero interest. The turkey in their enclosure seemed slightly confused.

Cherry blossoms!

A swam that seemed annoyed by all. It probably had a nest nearby.
More blossoms.
Llamas look funny with haircuts.
The Highland calves are still adorable.
One peacock that needs some love.
One last look at the cherry trees.
The painters have descended on the park!