Crohn’s disease… the silent killer, with no real answers.
This life update is a long time coming. We’ve been struggling to find words to share with you all, so it’s been pushed back time and time again. And while we’re never certain about Jay’s Crohn’s disease, we’re in a much better place than we’ve been the past three years, so, here we are.. a massive life update.
Bare with us, as we share with you what our time in Oregon has looked like, ways we’ve felt life and how we’ve been betrayed.. and we’ve even spilling the beans on our first International trip since March 2020!
Sometimes, life sucks.
Yes, you read that right. There are times where life just flat out sucks. Where being “happy” isn’t an option. Where it takes everything in your power to get out of bed in the morning and do the same day you did yesterday all over again… while really, you’re just waiting for the sun to go down so you can go back to sleep.
For over a year, this was the life we lived.
Life for us sucked. Or rather, the life we had was sucked out of us. It’s something we’ve never experienced before, and something we hope to never have to experience again.
To explain.. we’re taking you back to 2018.
2018 was the year Jay wrapped up physiotherapy school in Scotland. We were living the life of our dreams, traveling around in our beloved Isobel, and feeling so full of life. Jay’s health was finally at a place where we could hike, overnight backpack, and travel while working without the constant drain of Crohn’s disease.
We were not just joyful, we were happy. Something that we believe are two completely different things. You could see it in our smiles, hear it in the way we talked, and feel it radiating from our souls.
Life was good. It was really good.
But then things changed… a downward spiral of a Crohn’s disease flare up
Our European visa was coming to and end. Our student visa in the UK had expired, and we had a business opportunity come up in Oregon, where both of us are from. Everything seemed to be pointing us back to the states, so we sold our van and bought tickets back to the US.
Within a month of settling into our new home, Jay’s health began to spiral out of control. For those that don’t know, he has Crohn’s disease and has had it since he was around 11 years old. It’s been well managed for the longest time, and he was in what the Crohn’s disease world considers remission.. (not having active Crohn’s). However, you’re never certain how long remission will last, and what will spiral you into a huge health crisis.
We’re not sure if it was from stress, from the transition back to American food — even the food that’s deemed “healthy” — or if his health was already trending downhill without our knowledge.
Regardless, downhill it was. And it happened quick.
The doctors couldn’t figure out how to help. We went through so many different medications and treatment plans, changed our diet more times than we could count.. tried everything in the book. Nothing was working.
Before we knew it, Jay was down 50 pounds, his bones were showing through his extremely thin skin. He couldn’t stay awake for more than an hour at a time. Walking from the chair to the kitchen table was a chore. And for more than 18 hours a day, he was sleeping.
It truly felt like his body was failing. And there was no glimpse of light at the end of the dark tunnel we were in.
Finally, Jay went on a very high dose of prednisone.
Something the doctors nor us wanted, but the only thing that gave Jay a chance to stop losing weight and maybe even start retaining some of the nutrients he was eating. Prednisone, and an unheard-of high dose of it.
About the same time the prednisone started helping Jay put his weight back on and giving him a little energy again, Jay took a trip to the ER. He was getting a second infusion of a new medicine and had a severe allergic reaction to it. This reaction and time in the emergency room drained whatever hope was creeping in from what seemed like progress… leaving us feeling defeated again.
Time for more visits to the Gastro and a new plan for Jay. This time, he tried another new medication. It was semi-doing its job. Jay had enough energy to leave the house, and church is where we found ourselves.
Church that wasn’t “church” at all…
We thought church would be good for us, so the energy Jay had to give was spent going to church. We got plugged into a home group, meeting with other believers once a week and still fitting in church (as in, in the building) when we could. Going only if Jay had energy and was feeling decent enough to be in public.
This was a huge thing for us.. it would take Jay two to three days to recover from leaving the house.
We soon found that “church” wasn’t really church at all. The church services and home group we were attending didn’t provide the support our souls needed. We were spending so much effort and energy going to meet with others, to say goodbye at the end of the night and not hear from anyone again until the following home group meeting or service.
It was more work and energy, that we couldn’t afford to give given our circumstances and the pit we were in. We were pouring our hearts out, talking about how much we’re struggling, only left to struggle at home alone. It was just as much draining emotionally for me, as it was physically for Jay, so we stopped going.
Back to time with just each other and moments at home with the Lord it was.
This entire time, we were making money however we could. We were housesitting, working on our website, doing yard work for neighbors (so Heather could be close to home and not worry about leaving Jay), and if Jay was having an okay day, I, Heather would take a subbing job in town.
Anytime I would be gone from the house, I would just worry about Jay. I knew he wasn’t able to make a meal and feed himself — he didn’t have the energy for that. I also was very aware that I may come home from work to find him sleeping in the hallway because he could’t make it back to the bed or chair after going the bathroom.
It was mentally and emotionally exhausting. It was wearing on my body in ways I didn’t even realize… I (Heather) was gaining weight from stress eating and not working out for the fear of leaving Jay for longer than needed. And also the fear of making him feel worse about himself, seeing me work out when he wanted to and couldn’t. I felt selfish needing time to take care of myself, and honestly didn’t know how Jay was going to get out of his health crisis, so I really didn’t care about me.
Que a new downward health spiral..
This time not just physically but a mental health spiral into near depression. Our head space was so out of whack. We needed help, but everywhere we looked for it led us to feeling worse. We would tell people our story, in tears telling people our story, explaining we need help and to feel like people care, only to be left with the sound of crickets… never hearing from those people again.
As time went by, we continued living this way, while Jay was slowly gaining strength back. We learned to not use our energy, both mentally and physically on trying to let people in, and instead put up a wall. A wall blocking people out, put up as a protection of both our hearts and as a barrier to allow for healing both mentally and physically.
After all, if we could just stick to ourselves, and not share our needs and struggles with anyone, then we weren’t being let down time and time again. And doing so we found energy to get outside a time our two ourselves.
As sad as it is.. that worked for us..
Jay got to the point where he was awake more than he was sleeping, I was comfortable leaving him in the house alone for a few days in a row while I was out subbing, and his brain fog started to leave while his creativity started to come back. We took a couple trips locally and Jay managed the time away okay, so we booked a bigger trip.
At this point (the beginning of 2020), we felt ready for a drastic change, so we bought tickets to Ireland. We planned about a month long trip, visiting family in LA before flying out to get abroad for the first time since moving back to the states.
We knew we wanted to get out of the states, and if we were in a new country and just stuck in an AirBnB the whole time, at least we were out together.. and that was what we needed.
Ireland, escaping darkness…
That month long trip was the mental and emotional escape we needed. We started on a train ride down to LA, then spent a number of days with family down there before flying to Ireland. As the train took us further and further south, we could feel life filling us again.
Our uncle even commented on how we were totally different people from the last time he saw us.
We knew his words were true. Getting out and traveling was bringing us life again. And it felt good.
While we were with family in California, we both got the flu and we were super sick the entire time in Ireland. But, we were so happy to be out exploring again. We felt alive in the fact that we were escaping the darkness we felt while back in the states. This being the case even with Jay taking naps all throughout the day, and us resting more than exploring.
Ireland was the trip we both needed to get out of the depression we were sinking into. It cleared our minds and souls, and allowed life to fill us again.
OHSU.. new eyes on Jay’s Crohn’s disease.
While in Ireland, we were waiting on a referral to go through for OHSU (the big hospital here in Oregon) for a more intense look at Jay’s Crohn’s disease and a second and third opinion of how to treat him. The treatment plan he was on was bringing him back to a baseline, but still wasn’t getting him where he needed to be. We were full of life, yet weren’t in the clear with his physical health.
Returning back to the states, COVID was in full swing. Appointments got cancelled and changed more times than we could count, but we were doing better. We weren’t in a hole anymore and had the zest of life we felt before.
This is when we knew we had to get out and explore more. Waiting on Jay’s health to be 100% wasn’t the answer we were looking for. The business deal we had come back for wasn’t going to go through. We knew we needed a way to have a place to call home while also being able to travel.
So in came Willy. Our second van build, and current home on wheels.
The shutdown that happened in 2020 was one of the best things for us. That’s not to say it wasn’t scary. Jay’s doctors had told us that people in Jay’s condition with the medications he was taking did not do well if they got COVID. So, we spent most of our time at home alone. COVID kept us from doing most anything and really leaving the house at all. It forced us to stay home, giving us more time to truly heal.
We filled our time gardening, working on ArboursAbroad, and dreaming up our new van build. By the end of 2020, Jay had two surgeries, a colonoscopy, and was on a treatment plan that was working well for him.
We bought our van in August 2020, but had yet to do any converting of it, as the first surgery knocked Jay out for about six weeks, followed by complications leading to a second surgery… but again, we felt life at the edge of our fingers.
We knew we were going in generally the right direction, it was just a matter of time before we got there.
Jay’s energy started returning…
After the second surgery, Jay was finally feeling good. He bought a mountain bike at the beginning of 2021, in sheer hope that it would help him get better. And it did. He rode to get his blood moving, to relieve stress, and just to feel himself again.
By the end of 2021, he was running and riding nearly every day. A night and day difference from the couple of years before. I kinda still can’t believe it. He went from not being able to walk down our driveway to a year later sitting on a mountain bike for the first time in forever. And boy, it felt good.
2021 seemed like a complete whirlwind.
With COVID-19 still spreading havoc around the world, our website, based mostly on travel at the time, took a huge hit. Our views tanked, which meant our affiliate programs tanked too, and we were making nearly nothing. I, Heather, took up a couple of long-term subbing jobs to keep money coming in while scrambling to figure out the future of ArboursAbroad.
Our grandpa got sick and moved in with us for about two months, I was working out of the house four days a week, and we were trying to convert our van all at the same time.
It was a hot mess, but we made it through.
The morning of October 5th, 2021 we finished the van, and hit the road by nightfall.
Jay was doing great. The treatment plan he was on (and is still on) for his Crohn’s disease was finally doing its job. We were filled with life again, not feeling trapped by the weight of the world we had been living in for the past three years.
Being on the road truly began to fill us with life again. We soaked in hot springs than we can count, Jay took thousands and thousands of photos, I cried when I saw a moose for the first time.. it was amazing.
We were finally feeling joy and happiness. Feeling like we were right where we needed to be. Doing what the Lord had put on our hearts. Living out this life in a way that we can share life and encourage others to truly live too.
Our website statistics started climbing again. We were back to making money from ArboursAbroad, and we were finally in a place to really think and breathe.
But as you might have guessed, things changed again…this time not Crohn’s disease
Three weeks into our trip, we were met with a change in our rental situation, forcing us to return to Oregon to sign a new contract. In a matter of a month, the life we felt so full of was being drained again. We needed to again refocus and get clarity.
After two months on the road, we turned around to head to Oregon, where we would sign a new contract and figure out what the heck we were going to do with our lives.
During our time in Oregon, Jay had a minor complication with things related to his Crohn’s disease sending us back up to Portland for another surgery, where we were then told that basically, he was not doing as great as we thought he was.
Blood tests and check-ups didn’t play out as they should, and he’s got another colonoscopy lined up for next week to give us more insights of what’s to come in his Crohn’s disease journey.
And while we really don’t have any clue what that will look like, we do know we feel the healthiest when we’re away. Healthiest mentally, physically, and emotionally. We feel the most connected to the Lord and each other in nature and on the move.
So we’re moving on to something new..despite the Crohn’s disease
About a month ago, we booked our first international flights since March 2020. In just a couple of weeks, we’ll be in Mexico, and we couldn’t be more stoked!!! We gave our 30-day notice. Move out at the end of this month. Fly to Mexico the first week of June. And, really have no plan after that.
All we really know is that we are chasing the drastic change we desperately need, full speed ahead.
We’re trusting the Lord in leading us, as long as we take that initial step to allow Him to do so. We feel the Lord pulling us in a different direction. We don’t know what it looks like or where it will be, but we know it’s time for change. So we’re making it. Jumping in with no real plan, but happy to have a home on wheels to call our own and a God who faithfully leads us, as long as we’re willing to go.
We needed a change, and we’re seeking it, will you?
With this change comes so much hesitation. We’re extremely excited to force ourselves out of the comfort of where we’ve been, but also so nervous. But every time we think of a negative outcome or worry about something like Jay’s Crohn’s disease, we think the opposite of that worry. What if moving on is what makes him better? What if traveling again skyrockets our business? If we don’t try and we’re in the same place 40 years from now, then what?
It may seem reckless and irresponsible to some to not really have a plan, but we’re sick of planning and waiting. The timing will never be perfect. And not having a plan allows us to trust where the Lord guides us, instead of relying on our own thoughts and desires.
We’re here to encourage you to do the same. If you’re feeling stuck and like there’s no way out, there is… Take the leap. Abandon the lifestyle or place you’re in that’s just not bringing your happiness and joy, and make a drastic change to try something new. Move yourself and your family to a new country and pick up a restaurant job. Get out of the rut you’re in and teach English abroad. Start making money saving changes today, allowing for a different future.
You can do it. It may take time to get everything aligned, but it you can surely take the first step today. We’re here to encourage you to get out and truly live!
Interested in what’s been published lately..
We’ve been focusing a lot on our van build with ArboursAbroad and adding in a bit our trip here and there. Check out the following posts for more details!
A Week in the Boise National Forest | should we just move here?
5 Hot Springs in Stanley, Idaho | a pleasant surprise in the mountains
Utah Hot Springs | including a map, video, and loads of pictures
How to Choose the Best Campervan Stove | a great place to look at camping stove options!
Ways to Light Up Your Campground | great for camping and van lifing
The BEST Campervan Gadgets | like legit.. these things are good!
Interested in the top posts on our website?
Our best-performing posts on the website.. maybe a bit of a surprise..
Wild Camping in Norway | all the spots we stayed during our time in Norway
Dean Village | a dreamy historic area of Edinburgh, Scotland
Van Floor Insulation | materials + tools + a guide
Cost of Food in Italy | breaking down the best places to shop and prices to expect
Driving in Scotland | created after driving over 10,000 miles in the tiny country
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