Another Round Down, and a New Dream

 For those of you who've been following along on this health saga, you may remember that I had a full day of testing scheduled at Cleveland Clinic on October 18. At first, I put off posting an update until I had some results. And then I put off posting because, well, it went about like all the other rounds.

Micah and I traveled up for our third visit to Cleveland, and I spent a grueling 8 hours undergoing a series of tests: QSART and tilt table testing to evaluate for autonomic dysfunction; 2-hour-long EMG to look at nerve and muscle function, specifically re-assessing for myasthenia gravis; and repeat skin biopsies to follow up and re-evaluate small fiber neuropathy. There's no need to tell you, it was an exhausting day (and shout-out to Micah, who spent those eight hours on uncomfortable waiting room chairs). I had a virtual follow-up scheduled with my neuromuscular specialist for the following week--this week.

Results trickled in in the meantime, and I knew they weren't looking promising. The EMG and tilt table seemed to be normal, although none of the subjective symptoms from my tilt table seemed to have been recorded, at least in the patient portal (like dizziness when I was standing, heaviness in my legs, shortness of breath, etc). The QSART was only slightly abnormal, but nothing to write home about, and the reading physician concluded with saying the results were "consistent with autonomic and/or small fiber neuropathy." In other words, quite possibly no new information. The biopsy results were (and still are) pending, since they take 2-3 weeks. 

Yesterday afternoon I had my virtual follow-up and, without unpacking all of it, I can honestly say it was one of the most exasperating, frustrating doctor appointments I've had in these six years (and I had had some doozies before this!). The doctor, who is very nice as a person, did not listen at all. She talked over me, dismissed my questions and thoughts, and seemed determined to fixate on problems that weren't really problems or complaints for me. I pressed my point on a few issues that really mattered to me, but was honestly so angry and shut down by the end of the conversation that I didn't have much fight left. She concluded that, at least as far as her evaluation and my tests were concerned, the cause of all my symptoms was not neuromuscular. She recommended following up with rheumatology again, and released me from her office to become the ping-pong ball bounced between neurology and rheumatology again. I was so angry at the time, I couldn't even cry. 

One possibility has nagged at the back of my mind for years now, and that is that this could be something like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There could be other factors as well, but it just seemed like a possible cause of a lot of what I'm experiencing. I had asked at my rheumatology visit at Cleveland several months ago, and the attending physician said he didn't feel we were at the point of discussing it, since ME/CFS is a diagnosis of exclusion (meaning, every other reasonable option needs to be ruled out first). I brought it up with the doctor yesterday, and she said, "Well, you have chronic fatigue. You're tired every day, that's what fatigue means. So I don't see what difference it makes to call it chronic fatigue syndrome, it's just another word" (to which I responded, with as much grace as I could muster, that it matters a great deal to the person living with symptoms to know what it is that they're actually living with). In the end, she recommended asking rheumatology, since they often make a diagnosis of ME/CFS. 

So I reached out to my local rheumatologist to begin a discussion about it. She got back to me almost immediately and confessed apologetically that she's not familiar or comfortable enough with the diagnosis to tackle it. She recommended finding someone at Cleveland, which didn't sit all that well the morning after my last visit there... As the day went on, though, and I chatted with my wonderful physician sister-in-law, I decided to reach out to the rheumatology resident whom I had seen (and loved!) at Cleveland several months ago, on the off chance that she would be ready to discuss this diagnosis after another failed round of neuro testing. I sent her a message through the patient portal, not necessarily hoping for much. But she wrote me back within half an hour saying she would be happy to schedule a virtual visit to talk through ME/CFS, treatment options, and what to expect! We are still FAR from answers, as always, on this journey. But at least today we have a next step and a glimmer of hope. 

In the meantime, something completely different--and far more exciting--has been brewing. The story, like all good stories, is a long one that requires some background. So here we go...

For several years, Micah and I have had a passion for marriages, and a desire to support others in their relationships. We know how important it's been to us through the years to be able to get away together, and we wanted desperately to provide that for other couples. We began to pray daily for what we called our "Runaway Hotel" (Thomas' brilliant name for it), which we envisioned as a camper that we could set up and send other couples to for a weekend away. We watched for suitable campers, researched how to remodel and set them up, and daydreamed about what the space could be. For years. 

Over time, we began to discuss the logistics of it: where would we store it? How often could we set it up at a campsite and send couples "away?" What if a camper wasn't everyone's cup of tea? We tackled the questions in stages. Maybe we could buy a small plot of land, and set the trailer up there. Maybe we could send some couples away to a hotel for a weekend instead. Maybe, if we had the land, we could just build a small cottage or something instead. The dream grew and evolved, and we began to realize it might be something a little bigger than we first imagined. And we continued to pray daily. 

Meanwhile, things changed drastically with my health. We began to navigate life with chronic illness, and to feel in earnest how much something like this can impact relationships. We experienced countless trips out of town (for fun or for medical reasons) that resulted in my needing to take naps in the car, or crash for days afterward. We learned to plan meals out at restaurants well in advance, researching their safety for my celiac disease, accessibility, and whatever other needs my health presented in the moment. We discovered that we could no longer enjoy quaint bed and breakfast stays because of my dietary restrictions. I felt more and more often like Micah's patient, and not his wife. And we began to feel the burden of always having this illness in front of us as a couple. 

And we came to realize, firsthand, how amazing it would be to have a way to step away from it, at least a little, and just get away together as a couple--and not partners on a health journey. 

Which is when the dream took a definite turn. After praying daily for several years for a way to encourage other couples, asking God for clearer vision and purpose, and waiting on Him to move, suddenly things came clearly into focus. 

What if, we wondered, we really did acquire land? What if we found a camper and made it as accessible as possible, to host couples? And what if we built a series of small cottages on the land, all of them accessible to people with a number of disabilities/chronic illnesses? And what if we ran it as a bed and breakfast business, with completely safe, allergen-free meals delivered in picnic baskets to the cottage doors (something we had enjoyed pre-celiac at an amazing bed and breakfast, and had always wanted to replicate with our Runaway Hotel)? And what if some day we moved out there, to be closer to our guests and create an accessible home for ourselves and friends/family?

It was a big dream. Much bigger than a camper on loan for a weekend. But was it even possible? We doubled down on our prayers, asking God for both wisdom and confirmation to have the courage to step out in faith. 

We began to learn all that we could about land in our area, about zoning and ordinances and code. I studied up on our county's 20-year land use plans. We began to watch the real estate market to get a feel for what kinds of properties were on offer. But we couldn't find an example of anything like this anywhere in our area. Our idea seemed to slip between the cracks of all of the zoning laws and codes. We had to know if it was even possible before we pursued things any further. 

I wrote to the lowest-on-the-chain person I could find in our county zoning appeals office and briefly outlined what we hoped to do. I asked, in short, whether it was even reasonable to pursue it, and whether it was a feasible idea. It was several discouraging days before we heard anything back--but the response came from a senior member of the zoning appeals department. It was incredibly encouraging! He outlined in detail the appeals that would need to be filed, the kinds of properties that would work best, properties to avoid, and offered to discuss specific potential properties at any time. It felt like a resounding "Yes!" to our prayers for confirmation. 

The next hurdle was to tell our kids. As those of you who know them may have noticed, they are not big fans of change. While they'd heard us talk about our Runaway Hotel for years, this was a departure from the original dream. We brought the idea to them one weekend in the car, describing the progression of the dream, and all the ways the cottages might be a welcome retreat to others. Immediately, they jumped in with ideas and suggestions of their own, and were excited about the prospect!  We were floored. It felt like another "Yes" in response to our prayers. 

Over the next weeks, we told our parents and some friends and family, and at every turn, we seemed to be met with not only confirmation, but resounding support of the idea. It just seemed to make sense in so many ways, like it had always been the logical result of the journey we've been on and the things we're passionate about. 

So this is where we sit now: in the space between the dream and its completion. We don't know how it will look exactly, or what the timeline will be (although if you ask us, we'll happily talk your ear off about all the things that might be). But we are actively pursuing the dream we feel God has laid on our hearts--honestly, brought to fruition largely because of all we've struggled through with my health. For all the times we've wrestled with the challenges of this journey, we're grateful for the way it's shaped our hearts and vision, and how it might in turn bless other couples. It's unexpected and wild and a little terrifying, but as we've often learned before, that's the very best place to be!