My Husband has Lyme Disease Part 1

It’s been on my mind to share some stories from the past 6 years of my life. If we are social media friends or if you follow my photography work, you might have heard me talk briefly about my husband Jonathan’s extended illness.  A couple years ago I shared our visit to Mayo Clinic in Rochester, MN in a self-portrait post.

In our online world, some people choose to share every part of their lives while others choose to keep to themselves. I am very active on social media, but Jonathan and I chose to keep many of the day-to-day details of his illness to ourselves and very close family. This was for many reasons. One of the main reasons was a distinct lack of clarity about our situation. We knew what he was experiencing, but we didn’t always know why. It’s hard to be sick, but not knowing why you’re sick is even harder.  The vulnerability of this situation cannot be overstated. Not only are you subject to the fear of the unknown and the what-if’s, but you also become subject to the laundry list of tests, medicines,  diets and opinions of doctors with widely different philosophies. This is a large experience to swallow. Talking to a broad base of people when the subject is so open ended is not always prudent.

Our situation hasn’t changed. He is still sick and we continue to struggle and fight with the ramifications. However, in the last few months both Jonathan and I have felt ready to share our stories with a broader audience. We want people to know what Lyme Disease can look like, as well as the many ways our hearts have been blessed and deepened through this experience. He’s given me his full backing to write these posts and share our experiences with you.

I will be doing a series of 5-6 posts (still working out all the details) sharing both the actual story of when Jonathan got sick, his symptoms and some of his treatment paths. This will be of interest to those who want to learn more about the disease. For the rest of you, there will be stories of walking out our marriage, of my personal growth, and of the things we’ve learned at the intersection of faith and suffering.

My objectives in greater detail:

1. Lyme Disease awareness. I’m sure you’ve heard that the tick population, along with tick borne illnesses, are on the rise. Because mainstream medicine is often unhelpful in both diagnosis and treatment of the disease, I write to voice a personal experience with the disease in hopes that others might interpret their own symptoms, learn to educate themselves and find a pathway to healing.

2. To honor marriage. I’m a wedding photographer and every weekend I see people promising to stay true to each other in sickness and in health. This is a big promise and sometimes I cry behind my camera because I know the weight of those words. Working out a marriage amidst health loss is not something we thought we’d do in our 30’s. I want to share our stories with my couples in hopes that it will encourage you to know that hard times can bring good things.

3. Because of faith. Jonathan and I are Christians and believe in the reality of God and of His son, Jesus. This shapes our perspective on everything we experience. If you read the Bible, it tells how Jesus had compassion on humans suffering under the weight of sin and sickness, and came down from heaven to live as a human so that He could help. He confronted sin on the spiritual level and defeated it by first dying, and then rising from the dead. Jonathan and I believe that we are not just a physical body, but that we also have a soul. When the body is affected by sickness, you experience in part what it’s like to die. When you die, you will lose your earthly body and only the soul will remain. Because of this, the spiritual part of us is greatly affected by sickness. The physical and spiritual cannot be disconnected.  So, I will talk about faith in hope that it will move you to trust God and be hungry to know Him more.

4. To share about my personal growth. I married Jonathan when I was 20 and had my first baby at 21. I didn’t feel young at the time, but I recognize that now.  I brought some of my own strengths and assets into our marriage, but depended on him largely for others. I have had a pampered existence with loving parents and almost zero trauma, so if you wonder why I’m a generally happy and carefree person, that’s why. Experiencing some hard stuff was probably in order. I’ve made some improvements toward standing on my own two feet, rolling with the punches and having a longer range perspective.  I’m learning to raise kids while taking care of my husband, pushing in to my creative passions and growing my own business. I have a couple of nervous breakdowns under my belt and have learned a lot along the way.

JONATHAN’S LYME DISEASE STORY – Part I

In May of 2009 we were living in Detroit Lakes, MN and Jonathan came home from work. As a land surveyor, he had spent the day walking a property in Mahnomen County. When he pulled off his blue fleece and t-shirt in preparation for a shower, he called me in. “Hey Abs, look at this. I think it’s a deer tick.” It was embedded in his left arm. He pulled it out and examined it with curiousity before deciding to shove it into a Ziploc. We knew tick bites could be a “thing”, so we agreed to keep an eye on the bite spot for a while and see if anything came of it. The bite spot was a touch red, but no rashes ever appeared and all seemed well so we eventually threw away the tick-in-a-bag and moved on, unconcerned.

Within 5 – 6 months Jonathan began feeling some pesky things. His hands and feet were getting really cold at work. He got a space heater that helped. His lower back started to irritate him on long car rides  – “I’m getting older, after all,” – and bought a mesh back support sold by a street fair vendor at Barnesville Potato Days. He started to feel some anxiety during extremely low pressure situations that normally wouldn’t have bothered him at all. Weird. What is that about?! Worst of all, his stomach started feeling extra empty before lunch, almost like a hollow gripping. He started coming home earlier for lunch and eating a lot more. He would call ahead, “Abs, make me a big lunch today. I feel kind of weak and run down; I must just need to eat a lot more.” He wasn’t sleeping well at night. These symptoms, that we didn’t think were symptoms, stretched out and ramped up over the next year.

In January of 2011, we were attending an annual meeting at our church in Fargo, ND.  The meeting dragged on and it was well past the lunch hour before we loaded 3 ½-year-old Anika in the car to head home. Before starting the engine, Jonathan felt a wave of weakness pass through him. “Can you drive?” he asked me. “I don’t feel quite right”. We exchanged places. Jonathan sat in the passenger seat, his feet still touching the snowy parking lot. I was just about to start the car when Jonathan slumped over and passed out.  Panicking, I ran around to his side and thoughtlessly grabbed snow to pat in his face. “Wake up! Jonathan! Wake up!! Someone help!” A man from church came out the church door and reached my side just as Jonathan came to. He was a little disoriented but fine. We re-grouped and assumed he had low blood sugar from lunch being late.  I dug a plate of brownies out of the back seat and he started eating those. We drove to my parent’s house for lunch. Jonathan was weak and so cold, so he rested on the couch and seemed to regain his strength by evening.

Monday came and it was business as usual. Tuesday, Wednesday, Thursday.  Friday I got a call. It was Tiffiny at work, telling me that Jonathan had had some sort of episode. He was fine, but he was lying on the floor of his office and I should come. I arrived quickly and found him shaking on the floor, ever so close to passing out. Blood sugar again? Tiffiny had made him a sandwich and I had come prepared with a bowl of pineapple. She helped me get him into the car and I drove him straight to the walk-in clinic, making him eat pineapple all the way. Two episodes in one week … not okay.

The doctors completed all the standard blood work and metabolic panels as the episode passed and his shaking slowly subsided. You’re the picture of health, they said. But make an appointment with your doctor and follow up with him.

I found out I was pregnant the same month.  All day nausea hit hard and fast and the first three weeks I lost 12 lbs.

Jonathan saw his doctor and did everything that was recommended. He was feeling weird tweaks in his heart area, and lunch breaks were taking longer all the time, as Jonathan now needed to both eat extra food and lie down to rest.  There were ultrasounds, heart monitors, more blood work, prescription antacids, anxiety meds. Also, an IBS diagnosis accompanied by visits to a GI specialist. There were dietary changes. He was told to walk a little before eating meals, and again afterwards. As you can imagine, this did absolutely nothing. The anxiety medication helped a little but that was it.  Every test came back perfect . He was the sickest healthiest person around.  What was going on?! We wracked our brains and remembered  the tick bite. “Should we do a test for Lyme disease?” we asked. “Was there a rash or bullseye?” the doctor asked. Well, no. The doctor waved off the idea. We didn’t push, but we still wondered.

Jonathan was eating like a horse. Once I recovered from the nausea of the first trimester, I spent my evenings cooking four meals at a time, literally. He was shoving down platefuls of spaghetti just to ward off impending weakness. There was this constant, hollow gripping in his stomach that wouldn’t stop.

YOU ARE ONLY POURING OUT WHAT YOU’VE BEEN GIVEN

I handled Jonathan’s new medical situation and my pregnancy with plenty of optimism and a cheerful work ethic. The doctors couldn’t find anything wrong with him, so it must be a fluke sickness. I could whip together meals like nobody’s business, so whatever. Having Jonathan home for longer lunches wasn’t all terrible. It was kind of fun. I drove him to all his appointments and wrangled 4-year-old Anika and my expanding belly. One afternoon after drying the last dish and walking out of a clean kitchen I distinctly remember congratulating myself on a job well done. “You’ve handled everything quite admirably!” and mentally patted myself on the back.

I don’t believe that God speaks in an audible voice (at least not very often) but I certainly believe He speaks inside our hearts. In that moment, He spoke to me. “You are only pouring out what you’ve been given.”

I had been poured into my entire life. I was given a stable upbringing, loving parents, good friends, genuine faith. More than enough food to eat. More than enough money. Always an environment of hope. I was raised in these gifts and they had nourished me. Any stability and flexibility I had to lend to the situation was to none of my credit. The lesson was clear and it has stuck with me. Be honest and have gratitude for the gifts that have gone before you.

“WHEN YOU PASS THROUGH THE WATERS, I WILL BE WITH YOU…” Isaiah 43:2

Jonathan was having a lot of insomnia and nights were difficult. We were lying in bed one night and feeling fearful about all that was happening to us. We don’t often do this, but that evening I got Jonathan to agree to us both spending a few minutes silently, listening for any Bible verse that God might give us. Again, hearing His voice not audibly, but in our hearts. We would report to each other once we heard something. It sounds crazy, but it was all I could think to do in the middle of our stress. A few minutes passed. “Did you hear anything?” I asked Jonathan. “No verse,” he said, “I just have a crazy line from a song running through my head.” I was surprised, “Me too! What song?” We had both been listening for words, but instead we had both heard some lines of music. They were songs we had sung in the past. Different tunes, but lyrics based on the same verse: “When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, Nor shall the flame scorch you.” (Isaiah 43:2)  We thanked God for the promise and went to sleep.

Within just a few weeks, we had an old lady from church who I barely knew come up and tell me God had laid a verse on her heart for us. It was Isaiah 43:2.  Our brother-in-law texted us and said during his Bible reading, he had found a verse that he knew we were supposed to hear. Again, Isaiah 43:2.

This promise has continued with us on the journey.

Pregnant – July 2011How we spent our evenings. Lying on the couch both feeling sick (me from pregnancy) while Anika dashed around the room in a gymnastics leotard and a ballerina tutu. Apparently picking up bits and pieces of our conversation, she was playing a game she had aptly named “nauseated”.