Who are these people and dog? (the short version)

We’re Kim, Joe, and Leeeroy Jenkins:

Kim (me): I have multiple autoimmune diseases and the occasional bad attitude. I’m sleepy. My favorite thing to do was travel, but food restrictions and fatigue upended that for a minute. I’m about to get back out there with the help of my sweet camper van.
Joe: is nice, patient, and has a big beard. Joe rarely has a bad attitude. He’s the sensible one that didn’t want to live in a van, and that is why we haven’t sold our house (yet).
Leeeoy: is known to need the most frequent attitude adjustments. He’s a 3 year old large dog trapped in the body of a 13 year old small dog. VERY food motivated. We’re not gamers, but he got his name from this clip (warning: expletives!).

The long story

We’ve had a somewhat non-traditional life. Joe and I work in entertainment and always have. We met working backstage at an opera company basically in the middle of nowhere. We graduated with degrees in technical theater. We moved to Las Vegas and worked all over town.

For those of you not in the entertainment industry, what does that actually mean? Well, it means that we’ve never in our lives had a 9-to-5. We’ve been employees and freelancers (and more often, both at the same time for different entities): full time, part time, on call, all of the above at once – you name it.

What does this life actually look like, day to day? It can be a lot of different things: 100+ hour workweeks? Yes. Working 30+ days straight without any days off? Definitely. Long shifts? My longest was 31 hours straight. Was it worth it? Absolutely – the flip side of all that work was: summers mostly off. Being able to say no to work and go on vacation almost any time we wanted. Tons of overtime that made those vacations possible. We’ve worked in warehouses, casinos, parking lots, arenas, and installed more than one “Las Vegas circus” show. Almost every day was different. We routinely got paid to work shows and conventions that others spent money to attend.

Was this life pretty exciting? Hell yes. It was a TON of fun. We did super fun things and met some fantastic, profoundly talented people. It was (usually) labor intensive as well, and kept us in good shape for a long time. But things are different now. I’m SO tired. My joints kind of hurt. And I don’t remember things as well as I used to. I’m often foggy and woozy – usually without much notice. Now, I need more than the 3 nightly hours of sleep I used to get. I can’t live on fast food anymore (actually, I have Celiac – I can’t eat it at all nowadays).

As my health began to change more dramatically, I realized that I couldn’t keep up with my (our) previous lifestyle. So I walked away. I changed it up and decided maybe the non-profit and/or community arts sectors would be better suited to my health needs. But old habits die hard, and I had gotten used to being my own boss. I was spoiled rotten by working when I wanted and bouncing between clients to keep everything fresh. So what did I do? I found multiple part time jobs and ended up doing the exact same things to myself – no time off, long days running from one job to another – and doing it for WAY less money than in the private sector.

Then COVID hit. Within a few days, we were furloughed from our regular jobs and lost 100% of our freelance work. I had some time to think about the patterns I kept creating for myself. What would it take to break these patterns? Therapy, obviously. But I live in the United States and have terrible health insurance, so after a year of unemployment and underemployment, that’s not in the cards (more on my experience with inadequate health insurance and how to reduce your medical bills here).

After being similarly burnt out a few years ago, Joe and I converted my Honda Element into a car camper (I see all of you weird and beautiful #hotelement owners out there) and traveled around the country for a month. It was shortly after being diagnosed with Celiac, right before my autoimmune symptoms got big mad for the first time, and it was probably the best I’ve felt in recent history. We were outside, active, getting rest, eating fairly well, and constantly seeing family and friends. You know – all those “lifestyle” things that are supposed to help autoimmune symptoms. Weird how that actually works.

Anyway, I loved that experience so much that I’d been pestering Joe about converting a cargo van ever since. Our #hotelement was amazing, but we were getting too old and achy to camp in a vehicle without the ability to stand up while getting dressed or eating.

So anyway – back to COVID. We were on the cautious side, and also unemployed. For both health and financial reasons, we didn’t leave our house for much other than groceries, doctor appointments, and walks in the desert. We gutted our budget for over a year, purchasing literally nothing other than essentials. We cut the essentials down too – reducing anything name brand in our groceries, cutting our utility usage, and driving as little as possible. We started a small woodworking company. I took gigs on UpWork. Full disclosure – we absolutely were on unemployment during this time – unemployment kept us from destroying our life savings. I don’t for a second want to make it look like we managed the last year and a half alone – we had help, and there’s no shame in it.

By the time vaccines started rolling out, we had made it through the year without total financial destruction. As entertainment inched back towards opening up, I had to make a choice: back to the way we lived before or go for a big change? I’m almost forty (who thought that would happen? not me) – how many more giant leaps am I going to be comfortable taking? Seriously though, I’m so tired. I’m going to be out of “leap energy” soon.

Somewhere along the line, I read that one of the necessary steps in prioritizing your health is the honest evaluation of the time necessary to take care of yourself. Cooking food, resting, mediating – whatever it is that makes you feel better is probably time consuming. So I did an inventory, and I was shocked. Long-term chronically ill people wouldn’t have been surprised, but those of us newer to this way of life often are: it’s a full time job doing the things you need to do to maximize your energy. I’m exhausted just thinking about it. So, what would it take for me to truly focus on these things, actually break old habits and keep up on new ones? CLEARLY the best plan was to recreate our #hotelement life in a cargo van. CLEARLY.

So, we were incredibly fortunate – somehow two unemployed people got approved for an auto loan and bought a van. And now that it’s straight up summer in Las Vegas and we don’t have a garage or a driveway, we’re building it out in random parks, storage units, and mountainsides when it’s too hot (seriously).

What will this new life look like? I’m afraid to even put my hopes into writing.

Best case scenario: the van is built out and functional, we drive around, sometimes to other cities for gigs Joe has, other times just to explore new places and get outdoors. Hopefully, I write about it. There’s a pretty big learning curve when it comes to autoimmune disease, especially ones with dietary restrictions. I want to share what I’ve learned so far and what I continue to learn – what places are safe and comfortable to visit with autoimmune disease (specifically Celiac, but also for the larger autoimmune community). Along the way, we get outside and hang with our dog and move and eat well and rest.

Worst case scenario: we don’t finish building the van and I have to find a real job with my decaying skill set, or we hate camping in a van and give up. We try to sell a van with two rough cut holes in the roof, which were made in parking lots (seriously).

How exciting! Anything could happen: wild success, great health, embarrassing failure, financial devastation, getting a full time job – who knows what’s in store! People love suspense though, right? I’m sure you’re all at the edge of your seats. Anyway…

So, what is this page and what can you expect here?

Stuff about our van – building it, camping in it, and all that comes in between. We’re going to document everything van build. From shopping to planning to purchasing and building, we’ll put it all online. If you have questions about what we’re doing (or have done) drop us a line.

Stuff about food, especially for those who hate cooking or don’t have much energy to do it. I absolutely despise cooking and everything associated with it. I hate planning food, shopping for food, prepping the food, cooking the food – ok I like the eating part usually – and then cleaning up after the food. Look at how long that list is! Eating is exhausting (note: we do our best on this page to be cognizant of the larger disability community. So we are aware that not everyone eats in this way, but regardless of how you consume nutrition, it’s all time – and often energy – consuming). Until I was diagnosed with Celiac, Joe did 99% of the cooking in our house. If you have Celiac, or any type of dietary restriction, I’m sure you’ve come to understand that learning to cook is not an option. You’re going to have to do it. So I’m here for all of you out there that are overwhelmed and exhausted by this process. Everyone needs some form of nutrition, so maybe we can struggle through this together. I’m always, ALWAYS strictly gluten free. I get too sick to cheat. I try to loosely stick with anti-inflammatory and/or AIP foods. This is hard and usually means I don’t eat at restaurants. I’m always trying to find a balance between what gives me the best energy (in my experience, AIP) and what allows me to live my life without restrictions.

Stuff about traveling. Travel was my favorite hobby pre-Celiac. Travel is no longer the relaxing, exciting adventure it used to be. I’m exhausted now. It’s hard to find new places to eat. The only two times I’ve gotten glutened and therefore violently ill (I’m a puker! And if that info is TMI, a blog about Celiac disease is SO not the place for you) were both on vacation and in unfamiliar environments. I haven’t left the country since my Celiac diagnosis. This is partially a relief, I’m nervous about language barriers and a global lack of Celiac knowledge (some regions of the world are better than others), but mostly a bummer. Well, it’s time to get back out there (in a COVID-safe manner, of course). I know I seek online resources when I travel, so I might as well share mine.

Stuff about disability rights. I suffer from multiple autoimmune diseases – Hashimoto’s, Celiac, and Psoriasis to be exact. Some days I wonder if I’m headed towards an ME/CFS diagnosis, but I’m not there yet (stay tuned…). Autoimmune diseases are considered “hidden disabilities,” meaning they are a disability that is not immediately outwardly noticeable. Hidden disabilities encompass not just autoimmune diseases, but a variety of other health issues including (but not limited to) struggles with mental health, learning disabilities, and speech, hearing and sight impairments. This is just one portion of the larger, overall disability community. I’m not qualified to give a comprehensive lesson on the disability rights movement or the disability community (if you’d like to know more, here’s an easy place to start). However, it is imperative to remember the wider disability community in our words, actions and fight for access. Although this page is specifically directed at those with similar autoimmune issues, I want to ensure that we hold space for the disability community as a whole and amplify disabled voices.

Overall, come along for the ride if you’re getting older, getting more tired, or both. If you suffer from autoimmune disease, if your health is keeping you from travel, if you’re looking to see whether or not a couple of mid-lifers can create big, sustainable change without failing, or if you just want to build a sweet van. Definitely hit us up if you live in Las Vegas and have a warehouse where we can store and work on our van in the summers. We’re here for all of it!