Sunday, 30 September 2018


Back from vacation! We had a great time eating cheese in Switzerland and wandering around Budapest. I managed not to lose weight while being on a long vacation which I think is the first for me. We did eat a lot of cheese and chocolate but I honestly do that on most vacations. The key difference is being mostly healthy. It's amazing how much less tiring everything is when my body isn't fighting to breathe all the time or I'm not having coughing fits many times a day.

Amy took some amazing pictures with her fancy camera but since she hasn't had time to go through them yet - it has only been three days - here are pictures from my phone.

Took a boat ride from one town along Lake Brienz to another and then hiked back along the lake.
Paddleboarding at the swimming spot by David and Cindy's house. There are two SUP left at the park for anyone to use. They were pretty beaten up and the paddle was a old broom handle but it worked.
View from David and Cindy's house.
Classic Swiss cow in mountains. 
Classic road over the Alps that I drove. We met cyclists, motorcycle and sports car clubs, and the regional public bus that zoomed around the corners. 
Spent an afternoon strolling around Lucerne.
David and I did a "Via Ferrata"(meaning iron path) from Murren to Gimmelwald. We strapped on harnesses and helmets and climbed on the side of a cliff with only rebar for footing in some sections. So much fun! Amy strolled down the easy path, aka the road, with her oxygen and Isaiah did a longer hike that didn't involve walking over a waterfall on a single piece of wire.
After leaving David and Cindys, we spent a day in Vienna looking at jewels and churches that all had advertising on their renovation projects.
Budapest was a place I had been wanting to visit for awhile and the city did not disappoint. With their amazing transit system, we zipped from neighbourhood to neighbourhood between so much walking. It was very much a old Eastern European city. Isaiah said it reminded him of Paris meets Cuba with WWII memorials.
The baths! We went in the evening before the temperature dropped to appropriate fall-like weather and it was a lot of fun. Isaiah went in all the cold plunge pools while I stuck to the mid range ones. Amy and I were paranoid about getting dehydrated so we didn't stay in any for very long.
My eye had a weird reaction to (we think) one of the mineral pools so I spent the next two days putting antibiotic eye drops in my swollen eyelids. Thankfully the pharmacist spoke English when Isaiah went to the pharmacy and asked for drops.
Budapest has an iced coffee culture (unlike Switzerland) which made Amy and I very happy. 
We did a boat cruise - aka took the public ferry - along the Danube to Margaret Island for a morning/afternoon in a green space. 
The last night was spent watching the sun set over the Buda hills and then watching the buildings change colour over the Pest side. 

Sunday, 9 September 2018

We're off to Switzerland! Isaiah is thrilled to have a vacation from work and I'm excited to spend time in the mountains and eat chocolate.

Amy and I don't have lungs to handle the altitude of the highest Alp peaks (or even to the top of some of the gondolas) - her because of her terrible CF lungs, and me because I just don't handle altitude very well. So instead we'll be hanging out in the lower valleys which I'm sure will be lovely on their own.

Sunday, 2 September 2018

CF Connections Magazine

Happy September! I inadvertently took a two week holiday since I was travelling the last two weekends. But I'm back now!

Amy and I wrote an article for the CF Canada magazine for their Summer/Fall 2018 issue. The magazine is aimed at people in the CF community, either people with CF or family members of someone with CF. IWe basically just talked about our lives and what it was like growing up with CF. We tried to stress our independence and how we were raised to live in the moment as much as possible. The writing is a bit weird with us going back and forth between third and first person but I guess that's what happens when there are two people writing an article.

Here is the link to read it, if you want the version with pictures. Or I posted the text below. Go to "Cystic Fibrosis Connections" then "Summer/Fall 2018" and we're on page 12-13.


We were both born and raised in Petitcodiac, NB. Amy is 36 and Allison is 31. We have a younger sibling, David, 29, who does not have CF.

Our family never knew anything about CF until Amy was born. She was diagnosed at birth due to meconiun ileus and had to be rushed to the IWK hospital in Halifax to be operated on. Our parents then received a crash course in aerosols, physiotherapy, and digestive enzymes. Allison was born four years later and our parents went through the entire experience again.

Allison struggled with her weight from day one, and as a result spent much of her first four years in the hospital. She had a feeding tube inserted at 14 months to help with weight gain which was removed (finally!) when she was six and had stopped throwing up everything she ate. She was a feeding tube success story.

Our family did not let CF be the dominating factor in our lives. We had a very active childhood, with camping trips, hikes, and participating in sports. We all went on road trips, including across Canada in a minivan, for a month. Of course we still had our daily CF routine of aerosol masks twice a day, chest percussions, and leaving a trail of enzymes behind us everywhere we went.

We had a few hospitalizations as teenagers but overall were quite healthy and were able to do the things we enjoyed. Our parents always encouraged us to have autonomy over our own health. As such, we were confident going with our friends to sleepovers, overnight school trips, and summer camps. This independence helped when we went to university and were able to advocate for our health.

Mom and dad never hid the fact that we have CF and its implications for the future. As a result of this education, we have always been active participants in our own disease management. This has enabled us to have active and fulfilling lives without letting our disability become a barrier.

We have been able to fulfill our love of travelling to places such as Europe, Egypt, New Zealand and many more. Allison and David were able to cycle across Canada in 2008 as an awareness campaign and fundraiser for CF Canada.

Our family has been active in the local CF Chapter. We have fundraised for the Walk to Make CF History since the Moonwalk days and have talked at various Shinerama and other fundraising events. Dad has been actively promoting awareness of CF since we were born. He did annual talks during elementary school to explain the disease to our classmates which helped them know why we were taking pills and coughing all the time. He was honoured to receive the Breath of Life award at the latest CF Canada Volunteer Leadership Forum.

Once we reached adulthood, the effects of CF had a detrimental impact on our lives. Allison was hospitalized many times for lung infections and had to stop working as a recreational therapist due to health. With her boyfriend, Isaiah, she moved to Toronto where she could be listed for a lung transplant in 2013. During her time in Toronto, Allison felt the need to connect with people in the CF community who had also been through the transplant process.

Neither Allison or Amy were very active in the online CF community because growing up as siblings with CF meant that we always had someone around with a shared lived experience to talk to whenever we need support. We were able to commiserate with each other about hospitalizations, lung failure, and other ordeals.

Throughout Allison’s transplant process, we both have made online CF friends within the community. Allison received a life-saving double lung transplant in the fall of 2014. The recovery from the transplant was the most intense thing she’s ever gone through in her life. It was challenging but worth the effort in the end.

As a side-effect of the transplant, she has CF-related diabetes and was diagnosed with post-transplant lymphoproliferative disorder in 2015. After intensive chemotherapy, she is now two years cancer free and is again physically able to do the things she enjoys.

Amy was a NNICU nurse for over 10 years but has recently had to stop working due to declining health. She hopes to eventually receive a lung transplant but is currently unable to be listed due to the shortage of organ donors. She is working hard to remain stable by being as active as possible and always pushing at the edge of her physical limitations.

During our lifetime, we have seen a dramatic improvement in the quality and care for people living with CF. Having specialized CF clinics with a multi-disciplined team, improvements in medication, and the possibility of a transplant at the end of life have all been beneficial to our lives. This has all been possible through the work of CF Canada and their partners. We appreciate the work that CF Canada and their many volunteers have done in the past and continue to do to help enrich the lives of Canadians with CF.

Sunday, 12 August 2018

Writing workshop!

I decided a few weeks ago to take a workshop called "Crafting the Category Romance" run by my talented cousin who writes category romance under the pen name of Michelle Karl. If you're wondering what category romance is, they're the books put out mostly by Harlequin (although other companies publish them as well) and are lines called "Intrigue," "Super Romance," or "Historical." All the books in the lines follow the same themes and I refer to them as "book candy" where you read them for 100% entertainment value which is a completely valid reason to read a book.

I've been knocking around the idea of trying to write fiction for awhile and have tried it a few times in the past but it always frustrated me because I never had a clear goal. Now my goal is to write a full book! Nothing like jumping in with both feet. I'm trying romance because I read quite a bit of the genre (although not many category books until the last few weeks) so figure it's a good place to start rather than attempting sweeping epic about dragons and zombies.

Michelle writes for the 'Love Inspired Suspense' Harlequin line which is the Christian themed romance line of Harlequin. There are pretty strict guidelines about what the characters can and can not do - no swearing, drinking, or gambling allowed. Only a few brief kisses by way of romance. I'm aiming for this line too because 1) I've read quite a few of them and 2) I feel more comfortable starting out if I don't have to write a open door passionate affair.

Mom and I spent a lot of time on the Footpath coming up with ideas for my class and since it's a suspense theme, a lot of ways the heroine could get in trouble or almost be murdered only to be saved by the hero. I'm going with a Fundy Footpath location because it's fresh in my mind and this way I don't have to dream up a new spot. After many discussions on how someone could be stalked or pushed off a cliff, Mom then ended up having nightmares about someone coming after us while hiking so then we started discussing different topics. But now I have a list called "ways to almost die while hiking" that I have to figure out how to incorporate into the story.

So far the workshop has a been really informative and very inspiring on ways to get started as a fiction writer. I hope that I can write the book, even if it never gets published, because I think it will help my writing overall and it's always fun to try new challenges.

Anyway, that's what I'm up to these days between avoiding the heat and dehydrating food for Mom and I's next overnight hike (to be determined).

Sunday, 5 August 2018

Hiking the Fundy Footpath

Last week, Mom and I hiked the Fundy Footpath completing one of Mom's lifelong goals. Last year we started overnight camping with a few one night hikes and this year we were more strategic about building up to the four day hike. We started with one night at the Kenomee canyon in Economy, NS and followed up with a two night trip around Cape Chignecto. We decided after that that we were ready to tackle the Footpath.
All smiles at the beginning!
We began in St. Martins at the suspension bridge on a foggy Friday and set off toward Alma.
Two minutes in!
The hiking itself was intense. The trail was not overly long but the ascents and descents made every kilometre seem longer. The full bags on our backs didn't help either. I think the intensity of the cliffs surprises some people who are not ready for New Brunswick to be tough. The trail repeatedly goes from sea level to the top of the 200m cliffs. We broke every day down to the number of climbs we would have to do that day.

Day One

The first day was our “easy day” with only a few serious climbs.The first section from St. Martins to Little Salmon River had some stairs and a few bridges to help with the cliffs and crossing streams. I'm not sure the stairs helped everywhere because instead of switch backs, the stairs meant climbing straight up or down the hills on the wet wobbly stairs.

First stream crossing.
It was pretty foggy that first day so we didn't have great views at the look-offs but at least it was not actively raining. The people we met on the first day were soaked, having hiked through the rain of the previous two days and seemed happy to be almost done. They all had a certain look in their eyes when they said things like “wow it was hilly” and “those cliffs...” and trailed off without finishing the sentence. We had been warned before but it was a reminder that this would be tougher than Cape Chignecto.
Stairs down to Cradle Brook.
We camped at Cradle Brook and after filtering and boiling water for the next day (this is the only way I feel comfortable drinking stream water with my low immune system. It means carrying more fuel and spending a lot of time waiting for water to boil but I'm pretty nervous drinking raw water otherwise), we spent the evening on the rocky beach watching the fog roll into shore. And stretching our tired bodies. A lot of stretching.

The cliff to climb in the morning.
Day Two

The second day we started by climbing out of the Cradle Brook valley and after breaking for lunch, tackled the climb out of the Little Salmon River ravine. 
Little Salmon River.
All our meals were dehydrated food we prepared and were quite delicious. We had a supper of cheesy veggies, shrimp, and rice, and another of a tomato bean mushroom risotto. For lunch we had chili or soup that we would prep at breakfast and keep (semi) warm in a thermos. When matched with melba toast and rehydrated hummus, it was quite filling. Our hunger was the special ingredient that made every meal taste amazing.

The climb out of Little Salmon River was everything we had been warned. It started with fairly okay switchbacks and then the trail narrowed so it felt as though it would only take one misstep to tumble down the hill. The wet roots and rocks didn't help the footing.

Kilometre sign before the climb! 23km left to the park!
We reached a point where the trail widened so there was less “I'm going to fall into the ravine” fear. We stopped at a little look off and I started to feel a bit lightheaded. My legs also started really complaining. At first I thought it was just the heat and humidity that was taking me down so I drank a ton of my Gatorade but that didn't really help. Two minutes later, I was convinced that I wouldn't be able to do the trail anymore because I felt so weak. And then I realized it was probably just my blood sugars (after this long as a diabetic, you would think I would recognize the symptoms faster). Sure enough, my sugars were low. I stuffed my face with some food and waited for my body to feel better.

Managing my diabetes is the hardest part medically for me on these multi-day hikes. My anti-rejection medication, vitamins, and digestive enzymes add weight but they're so routine that I don't really think about it. The water I treat as much as possible to avoid dying a stupid death, but managing my blood sugars with activity is always a struggle. I can generally manage okay with regular exercise but when I'm doing an intense activity, day after day, my blood sugars and dosage requirements get thrown off.

It doesn't help that I take two types of insulin, short and long acting. The short acting I take before every meal and ideally it kicks in after two hours. The long term one I take in the morning and it's suppose peak with my prednisone in the afternoon. Of course, exercise affects everything. It changes how fast the insulin is absorbed, it varies how much I need with food, and there is always an cumulative effect to think about.

One thing I have learned from getting diabetes is how much exercise changes blood sugars for me. Short intense exercise in the morning has a reducing effect for the rest of the day. Also, sustained intense activity one day can lead to reductions on the next day as well. But then sometimes intense activity means my pancreas kicks in and decides to make insulin to help me out. It's all very confusing. It's a lot of science and a little bit of magic to get my dosage right on multi-day hikes.

The crash I had on the Little Salmon River incline was my only one of the entire Footpath hike which is really good for me. I had a couple on the Cape Chignecto trail but it seems I'm getting better at management for these types of events.
Bridge across Rapidly Brook
Once my blood sugar levels were back up to a reasonable level, I felt much better. The trail all seemed much more manageable as well. Once we were at the top, we had some reprieve before it was back down to Rapidly Brook. The day continued and we had a nice break at the beautiful Wolfe Brook when the sun came out. I would have camped there for the night but Mom wanted to keep going to our planned stop. 
Quick stretch break.
We made it to Telegraph Brook where the camping site was close to the rocky beach beside the waterfall. It was a beautiful place to camp. A predator bird (a peregrine falcon maybe?) kept flying over the ravine, making the most terrifying screech as it flew overhead.
Campsite at Telegraph Brook.
Day Three

The rain started around 2am. I think. Mom says I slept through most of it but woke up when it started thundering. The lightning seemed scary close but that may have been because we only had a thin tent between us and the storm. Thankfully the most intense rain ended by morning, leaving a mist and occasional drizzle. We tried our best to keep everything dry but we were pretty wet by the time we started hiking.

That morning we met Amy and Dad at an access road. They drove through the maze of back roads behind Sussex and brought us some new supplies. Is this cheating? Maybe. But it's not like it shortened our time any and we were carrying a lot of fuel for my high maintenance water demands. It was nice to get a change of dry clothes and drink water that didn't have a hint of old coffee (we stored our boiled water in old coffee bags while it cooled). The iced coffee and raspberries Amy brought were heavenly. We packed up enough stuff to last us to a fifth day just in case we needed it.
It cleared off in the afternoon for a great view of St. Martin's head.
That third day was a shorter day which was nice because it was unbelievably humid after the rain. The air had that 'pea soup' quality that has come to define this summer in the Maritimes. We managed but were very happy by the time we reached our campsite at the Brandy Brook beside the Tweedle Dee and Tweedle Dum waterfall. There was no beach access that night but we were able to dry out our stuff a bit before we went to bed.
Airing out the tent!
Day Four

The fourth and last day was our longest. Thankfully, the weather was cooperating and the humidity had finally dropped. The perfect day for hiking 18km. We crossed Goose Creek around low tide as planned (there is no way to cross at high tide) and after that the kilometre markers seemed to pass by at a reasonable speed even with the five climbs that day. 
Goose Creek!

We reached the zero kilometre trail marker of the Fundy Footpath at Goose River and I wish I had captured Mom's squeal of excitement at that point.
Look at that sweat shine.
We were officially done but there was another 10km to get to an actual access road. The last 10km through Fundy National Park is pretty boring. It has all been turned into a mountain biking trail so it's wide and mostly gravel. Very monotonous after spending four days on a beautiful trail through the forest. It was an anticlimactic way to end the hike. But at least it wasn't very strenuous (although the loose rocks were surprisingly hard on the bottom of our feet) and after a few hours on that trail we were out! 
Yay done!
Dad was there waiting for us with sticky buns from Alma and then took our smelly selves for some fried food at the take out.

The Conclusion

I said a few times while on the Footpath that it was the hardest hike I've ever done but I'm not really sure that's true. I never doubted my physical ability to do it (minus the one time I had low blood sugar). There was never any point where I looked at the cliff ahead and thought "I can't climb up that." I had descents where I said, “Wow, that was terrible” and ascents where I said, “I hope we don't have to go back down for awhile” but my legs were strong and carried me through. I was tired but fully capable.

So was it more demanding than the hike in Naxos to 'Zeus's cave' where I must have thrown up at least 4 times along the way? Or the hike in Newfoundland where I had to turn around early because the humidity and heat made me feel nauseous and unable to breathe? Those made me physically sick with my CF lungs.

The difference between my past experiences and now makes me feel as though I've lived two separated lives. My pre-transplant life where I threw up on hikes and the post transplant hike where I can tackle one of the hardest hikes in the Maritimes without a second thought. It's such a disconnect that I sometimes don't even feel like that part was real. But I still remember it vividly, how I couldn't even imagine ever feeling so healthy again that the Footpath would be on my radar. How it became a struggle some mornings to just get to the street car to take me to physiotherapy at the hospital.

I am so privileged to have been given this gift. My new lungs have helped change my body to be stronger and healthier than it ever has before. Sure, I still need rest days. I need my chill days where I relax and read my book or watch TV but that's part of the balance. And one side of the balance is to strap on my bag and hike for four days through the wilderness of New Brunswick.