My Husband has Lyme Disease Part 3
HIS EYE IS ON THE SPARROW
“Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father’s will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows.” Matthew 10:29-31
My sisters and I have an annual tradition of spending a girls’ weekend together. A cold Saturday in January 2011 found us browsing items at a local boutique where my eye caught sight of two little porcelain birds imported from a Scandinavian country. Salt and pepper shakers. I shook my head: “Twitter goes mainstream and now birds are popping up everywhere!” There were three holes in the pepper bird’s head and only one in the salt bird, but I bought them anyway. I liked these birds, these sparrows.
A week later, my husband got sick, ushering in several years that have been more pepper than salt. If you sat at my table now, you’d see the birds with tails cracked from shattering and being glued back together. Stubborn witnesses, those birds. They tell me that if two sparrows can’t escape Jesus’ eye, neither can we.
Jonathan’s health had gone downhill our first few months in Moorhead. Battling continued weakness and poor gut function, he spent his time in the bathroom or in bed where he was sweating profusely from the head and torso. Over the headboard hung a hand towel which he’d regularly use to wipe his face and neck. Any virus would take him a notch lower and leave him with additional symptoms for months.
Strangely, food seemed to be the only thing that calmed his body even a little. He would eat all day and night without gaining any weight (and without losing any either). Any kind of medicine was challenging and even a few drops from the homeopathic doctor made him intolerably sicker. He ate piece after piece of bread to avoid feeling like passing out.
We were looking for direction on what to try next. Our brother-in-law was seeing a local naturopathic doctor at the time and offered to pay for Jonathan’s first visit in January 2013. A stool sample revealed a possible parasite, and the doctor also gave him a clinical diagnosis of mycoplasma (a common Lyme co-infection) based on the findings of the homeopathic doctor.
A general medley of 20+ Chinese herbs was prescribed, a formula broad enough to treat a variety of problems. It worked to some degree, clearing Jonathan’s body from surface viruses and returning him to a regular eating schedule.
Fascinated by the help he had received from herbs both now and in 2011, Jonathan discovered a book by Stephen Buhner titled Herbal Antibiotics. One hears about pharmaceutical antibiotics such as doxycycline and amoxicillin but what were herbal antibiotics? We didn’t know such a thing existed.
Stephen Buhner’s research relies on medical studies done in Europe, Africa and Asia. In these countries, herbs are commonly used as medicine. The United States is one of the lone countries where herbs are seen as mostly placebo, insignificant plants with little, if any, healing power. This century, our country has made amazing advances in bio-medicine and healing people with life-threatening medical conditions. But what about the millions of nagging, chronic illnesses that weaken and debilitate a wide percentage of our population?
Turns out, the same author had written a book about mycoplasma which Jonathan immediately read. Discovery of new herbs followed: cordyceps, houttuynia, Chinese skullcap, sida acuta, isatis. With permission from the naturopathic doctor, Jonathan purchased a few and began taking them, along with other herbs and supplements that the doctor had prescribed. Some of the herbs were identical to those in the formula we had gotten from Dr. Lindlsey in Eau Claire in 2011.
The herbs had a notable effect on Jonathan’s symptoms. By September of 2013, he felt a regained sense of stability, and after a full year off of work, Jonathan approached his boss and asked if he could work from home. Meadowland Surveying welcomed him back with open arms and helped arrange a work-from-home situation. Jonathan and his boss agreed to an hourly wage that reflected his license and experience level but took into account his unpredictability. Jonathan would work from home (sometimes from bed) when he felt well and take days off when he was sick. His laptop was networked into the Detroit Lakes office and he started calculating and drawing land surveys again. Photographers don’t make a lot of money in the winter, so going into the winter with an extra paycheck was very welcome.
There were many days Jonathan could sit quietly and work from a laptop. As his functionality increased, he would be up and around the apartment loading the dishwasher and helping with the girls. As winter arrived, he occasionally even shoveled a pathway from our patio door to the street. One benefit of being home all the time was the hours he was able to spend with the girls, reading them books and watching them grow.
Jonathan’s uphill health progress was punctuated by a number of challenges in our day-to-day life. We had moved out of our Detroit Lakes house to minimize our monthly bills, but apartment living gave us many hardships in return.
First off, the airflow in apartments is terrible. Window light and fresh air are at a minimum. All four of us began a cycle of getting sick. Over the course of that winter, we caught cold after stomach flu after cold. When a virus stacked on top of his existing issues, Jonathan’s progress would be temporarily halted and he’d be back in bed.
Eden turned one and was still waking up throughout the night, sometimes screaming for hours at a time. We didn’t know she was dairy intolerant and bowls of yogurt or bottles of milk before bed were making her tummy hurt. I worried about our screaming baby bothering the apartment neighbors. Nothing would calm her down except bundling her in a blanket and taking her outside, often in the wee hours of the morning to watch cars drive by on a distant road. We’d spend hours sitting next to her crib, holding her hand while she lay awake.
Around this same time, red welts started appearing on my arms and legs. They were itchy and sometimes painful. Were they stress-related hives? I tried creams and salves but nothing seemed to help.
The hot water heater for our building was stationed directly next door to our apartment. It broke and flooded our bedroom floor twice, which meant we had to empty out our bedroom furniture and run fans and a dehumidifer to dry up the water.
A few months after our move, any fantasies of adventure left and I found myself grieving the loss of our home in Detroit Lakes. Grief would come in waves and leave me in tears. We had planned to raise our kids there. I missed my big kitchen, the big windows and the light.
I was still getting red welts on my legs, sometimes over 50 itchy, painful spots on one leg. It had been months and we didn’t know why. The itching was constant. What is causing this?! One morning in February 2013 we concluded our devotional prayer time with a pleading request that God would show us why I was getting these red welts. We said “Amen,” and Jonathan reached into our bed rail for a devotional book he had been reading. When he opened the book, a bug was crawling across the page. Google identified it as a bed bug.
The apartment owners acted surprised and tried to suggest we brought the bed bugs. We were told to wash and dry every piece of fabric in the house which turned into a long day of work at the laundromat. They did a chemical treatment and told us to continue sleeping in the apartment. This would draw the bugs out of the walls and into contact with the poison where they would die. I’m not sure why I believed this. I woke to very alive bugs crawling on my sheets and it made me crazy.
In a later phone conversation, the apartment owner expressed frustration over the situation, saying, “We tried to take care of this before you moved in.” He quickly backpedaled, realizing he had given away too much. They had allowed us to sign a lease without telling us that bed bugs, or at least bugs of some kind, had been in our unit. Jonathan was too sick to take initiative so I had to make the phone calls, threatening legal action if they didn’t remedy the situation with the expensive heat treatment.
Under pressure, they agreed. Friends came and helped me prepare for the treatment, and our apartment became a jungle with furniture moved away from the walls.
With camera equipment and a change of clothes packed into garbage bags, we re-located to my parent’s house.
Within a few days, every trace of the infestation was gone and we were able to move back in. A couple years later, we noticed the apartment building contract had been altered, saying that any bed bugs found in a residence would be the sole financial responsibility of the current tenant. Yikes!
At that time, we were living off our savings account and my part-time photography work. I flew to Alabama that spring to shoot a wedding and came home determined to build a full-time business that would provide for our family. Researching the landscape of photographers in the Fargo-Moorhead area, Jonathan and I started laying the groundwork by building pricing structures and creating a brand. I was “Studio A Photo” then.
Although the business framework was important, my primary focus from the very start was on being a better photographer. I read books on natural lighting and off-camera flash, attended local workshops, poured over photographer’s blogs and studied every image I saw. Immediately, I’d turn around and apply the knowledge while shooting for my clients. My work improved significantly from year to year.
Since I couldn’t shoot outdoors in the winter, I rented studio time from a local photographer. I owned all my equipment debt-free and wanted to avoid as much overhead as possible. To save money, I stored all my gear in our apartment instead of at the studio and negotiated an hourly rate for shooting time only. Before shoots, I would pack my car with metal backdrop stands, lighting equipment, cameras and a 9-foot paper backdrop roll which could only fit into my car diagonally by sticking out the front passenger window. The wind would catch on the roll as I drove down the interstate and sound like a warning siren. One time I called Jonathan while driving, concerned there might be a tornado warning.
Arriving at the studio meant multiple trips down two hallways and up two flights of stairs hauling gear. To make it through the hours of hauling, I’d talk myself through every step. “You’re paying your dues, Abby. One day you’ll earn a more convenient situation.” Every shoot was a long, laborious process but I was grateful for each one.
UNEXPECTED HEALTH EXPERIENCES
It’s difficult to talk about my personal health experiences in the summer of 2013 because it’s politically questionable, but I think it’s important information for any of you in similar situations. Jonathan was feeling steady, slow improvement that year but I felt a growing sense of weakness. There was definitely some sleep deprivation between caring for my children and building a business, but it was more than that. Every day, I felt as though I was carrying around an extra 100 pounds. Worries were feeling heavier; work felt harder. Hauling gear up to the studio seemed to zap more and more of my energy.
My reactions to stressful circumstances became emotionally stronger. Everything felt so hard. To release my feelings, I’d go into the 6×3 laundry room, shut the door and silently scream and sob in the dark. Something as simple as parking in the street and carrying in groceries felt exhausting. If it was cold or windy out, I could hardly bear it. I was crying a lot more about everything. For the first time in Jonathan’s illness, I wasn’t managing well.
This came to a head the weekend of my family’s annual camping trip. Jonathan was too sick to travel, but the girls and I really wanted to go. Very kindly, Jonathan’s sister drove down to stay with him for the weekend. The day of the trip, I packed the car and started out. I was really excited to go on this camping trip! But the other half of me felt intense grief at leaving Jonathan behind. My emotions were very strong. Can a person literally feel torn in two? I silently sobbed the first half of the drive. Shortly after arriving at the campground, I started feeling numb through my arms and legs. Finishing supper and walking toward my tent, I experienced my first ever anxiety attack. It freaked me out. I didn’t know what was happening. “I don’t feel good,” was the only thing I could sob as I fell toward my dad and threw my arms around his neck.
Even after the worst of it had passed, my heart pounded loudly until 7 in the morning, and I stared at the tent ceiling all night, awake, nauseated, dizzy and thirsty. It was raining the next morning. I walked down to the edge of the lake and sat in an empty row boat, catching the raindrops in my hand trying to make sense of what had happened. My mind was foggy and I couldn’t think straight.
I decided to see a doctor in the nearest town, who told me I was stressed and that I should drink more water. Feeling miserable, I cut the weekend short and drove home. For many people, anxiety is a constant companion, but you must believe me when I say anxiety was totally foreign to me. Never once in my life had I experienced anything close to it. Momentary shock or fear, yes, but not the numbing, chilling rain of anxiety.
I had 4-6 difficult weeks full of anxiety symptoms. A couple weeks after the incident at the campground, the naturopathic doctor in Walker, MN diagnosed me with a matching, rare co-infection to Jonathan. I took homeopathic drops in addition to several herbs for almost a year. After every dose, especially early on, I’d feel a burning sensation through my limbs. The anxiety continued with sleepless nights and a pounding chest, but with treatment, the frequency decreased along with the feelings of weakness and strong emotion.
Mainstream doctors disagree on Lyme or its co-infections being sexually transmittable, although natural doctors believe they are. I believe the heightened emotion, feelings of weakness, and now-brand-new anxiety episodes were due to my being infected with some of Jonathan’s illness. I probably received some of his pathogens around the time of our second daughter’s conception. We had been trying to get pregnant for ten months, finding out in January of 2011 that I was expecting Eden. This is the same month Jonathan first passed out from weakness/anxiety and the string of health issues began. It is well documented that Lyme and co-infections attack and inflame the nervous system, causing weakness and anxiety. I believe the pathogens lay dormant in my body until situational stress wore my immune system down, allowing the pathogens to inflame the nervous system and cause anxiety reactions. It was eye-opening and humbling to face symptoms in my own body. These infections are insidious and very real. I’m grateful for a healthy body and mind that responded well to simple herbal treatments.
Even when you strategically minimize your bills and live frugally, chronic illness can drain your resources very quickly. Lowered income plus extra medical bills create the perfect storm. I’m so excited to tell you this story about our finances. As I mentioned earlier, our monetary security blanket was a modest savings account from the sale of our house in Detroit Lakes. Because we were debt free and had some savings, we never considered ourselves in financial need. There were seasons of time when doctors’ fees and monthly bills meant we were spending more than we were earning. Still, we never publicly brought up the topic of our financial situation with anyone.
In the fall of 2013, it was time for Anika to start first grade. We had vaguely entertained notions of homeschooling but that was no longer an option. I couldn’t do it all. Wanting her to be in a Christian education setting, we looked into private schools in the area and found Grace Lutheran School. It looked great but we were uncertain how we’d pay the $6K yearly bill.
Some friends stopped by for a visit, bringing food, leaving $200 on our counter for more groceries and asking us casually about our plans for school in the fall. Before they left they offered to pay for Anika’s first year at Grace Lutheran School.
There were multiple friends from across the country who, out of the blue, started faithfully sending us large amounts of money every month. Extended relatives in town for a visit would leave $50 in my hand. Our parents, always looking out for us, gave us generous gifts of money. Church friends would give us gas or hotel money for out-of-town doctor appointments. During the months in which cash was tighter, more gifts would show up on our doorstep. During months of greater abundance, the gifts would taper off. Unreal.
When it was time to decide where Anika would go for 2nd grade, we got a call from the school offering a four-year, full-ride scholarship from an anonymous supporter of the school. To this day, we don’t know who it was. $24,000 handed to us in a single phone call.
A couple of years ago, we reflected on the overwhelming financial gifts that we had received from friends and strangers alike, all without us asking for help. We sat down and wrote down every gift and scholarship amount we could remember and it totaled up beyond $70,000. Our savings account stayed fairly steady throughout our difficult years and we remained debt-free, which honestly felt miraculous. Looking back, I can see God’s care for us through these family and friends who gave unconditionally. He financed our trip through suffering and pain. We had to do the traveling, but He took care of the money. I know this isn’t the story for everyone with chronic illness, but it has been for us. Whenever we doubted God’s care for us, finances was our billboard-sized reminder.
His eye is on the sparrow and no journey lasts forever.