The past few months have been an interesting journey for me. A little while ago I was preparing for a fun little vacation up north near the boundary waters, feeling carefree, excited to do some exploring and enjoy some rare time off. I had a great time in the boundary waters hunting for delicious leccinums over the course of the 4th of July week. I saw an old friend, made some new ones, and headed back to the twin cities refreshed, but tired from hiking, ready to get back into work. With our late spring this year all the produce seasons were stunted or slowed, soon it would be time to celebrate the parade of summer vegetables as they start to trickle in from the farmers. Everything seemed normal.
The monday night before I returned to work, I had some gastro intestinal issues, but thought nothing of it that evening after going to sleep. When I awoke though, something was not normal: I felt extremely tired, lethargic, and had a pounding headache the size of the Foshay building. I chalked it up to puking the night before and thought everything would work itself out. I’m a fit, healthy 20-something, I don’t have health problems! Being in the culinary industry as well, I don’t get health insurance as an all inclusive part of employment, so I really can’t have health problems.
Work was hell. I couldn’t concentrate. I made coffee strong enough to kill small animals (as my grandmother would say) and used it to stay awake during the day, living off of caffeine and little packets of ibuprofen. The nights were almost worse than work. I had the sweats so bad I had to change the sheets every night, I would be drenched, worse than I had ever seen. The weird part was that I was always freezing. The headaches did not leave either. My head would be pounding from the time I went to sleep until the time I went to sleep again the next day, literally 24 hours of intense headache pain each day, it never stopped. Something was wrong, and I was scared.
On Wednesday of that week, I was really bad looking. I had extreme pallor/paleness, and was sweating like a dog, I was wet, and mangy looking. My boss told me I needed to go the emergency room. I reluctantly agreed. I popped some more painkillers and headed off to the E.R. After I got into a room, I started to feel better as the painkillers kicked in, just a little. I told the doctors all about my symptoms and also that I had been hunting mushrooms like a complete fool for the past couple months. I had to go to the bathroom a couple times and did notice that my left eye looked a little strange….sunken almost. I put it off as nothing. The doctors in the emergency room gave me a clean bill of health, upon which I told them I had to depart immediately to cook for a party of 60, as I cannot leave the culinary team at work without my help.
I got back to the restaurant, cooked the party, and then started to feel like crap again. The headaches were still constant, the lethargy still hanging on. I went through the rest of the week as usual. I remember being called the “dead man walking” which is almost a bit funny now when I think about it, almost. My left eye started to get worse and worse. It was sunken into my head and totally bloodshot within the next two days. I also developed large ovoid rashes, four of them, all over my chest and stomach. They were totally solid in color-not a bulls-eye shape, and bright red. After I saw the rashes, It took a day or two, but the reality set in:
I have lyme disease……Oh @&^-!*^%-*&^-$^#@ !!!!!
I had no health insurance, but I knew I had to get in somewhere fast. The first appointment I could get was 2 days later. I went early in the morning, after a few moments of looking at me the P.A. deemed me unfit to work, did a massive battery of blood tests, gave me some horse tranquilizers and sent me home. She forbid me to go to work, and I went 3 days without being on the line. Physically I felt worse and worse. The lethargy was the strongest I have ever experienced, it was a quest just to get out of bed in the morning, although doubling my caffeine intake seemed to perk me up and help, until the end of the night, when I would become quite disoriented. My mind was so scatter brained that I didn’t trust myself to drive. I remember once sitting in an intersection for about 15 minutes, just wondering where I should go. I couldn’t remember where I had started driving to, and stayed parked, stranded in the middle of the street blocking traffic, dumbfounded.
After a few days the western blot test for lyme came back positive. Thankfully, the P.A. I had been seeing at a clinic in Edina put me on antibiotics right away, as I was symptomatic and felt like death. After a day on antibiotics (dioxycyline) I felt waaaay better. The lethargy was decreased, and I could see power and form return to my body. After another day or two, the confirmatory test came back positive for lyme. Two days after this confirmation is when the real trouble started though.
The trouble was that I woke up a few days after starting on the antibiotics and found I had minimal use of the left side of my face. Immediately I started an armchair google diagnosis and found out about something called “Bell’s Palsy”. Apparently lymes has the ability to cause neurological damage and paralysis if left untreated. I had just started to undergo antibiotic treatment though…how could this be happening to me? Could I be paralyzed forever?
The information online was reassuring, saying that most people recover from bell’s palsy. However, there was a margin of error, and those that fell within that suffered permanent paralysis. I believe in nothing, no god, myth, eight armed elephant, celestial diety or alternate dimension, but I would have prayed to the soles of my shoes if they could have provided me answers. I was scared, scared enough to contact the P.A. I had been seeing with no insurance again, to gauge her opinion. The P.A. saw me, after seeing my paralysis and absconding to the other room to consult a medical book for a few moments, she returned to the room with fear in her eyes. She was quiet for a moment and then said:
“Alan, this is really serious…you can’t mess with your brain. I just reserved you a room at Abbot Northwestern Hospital, you should get there immediately.”
I felt really bad now. I cried, then she cried, then she said “I’m sorry” and left the room to give me a chance to collect myself. I called my mom, luckily enough my step father was in town for work and was going to meet me at the hospital to help me get checked in. I knew the hospital stay might cost a bit, but I trusted that it was best to be thorough, and make sure I got proper care from professionals. When I got to the hospital, I signed a few papers, and answered a few questions. Shortly afterwords I was shown to my room and was informed some doctors would be by to see me in a few minutes.
The first doctors I saw were very young, two of them that asked me questions about what I had been doing. After them another doctor came by who was an infectious disease specialist. Then a neurologist, then another doctor who was the head of the department. The last doctor was quite fascinated when I said that I cook with over 30 species of wild mushrooms. In particular he was curious about chanterelles, and would not shut up about how amazing he thought they were. I told all of the doctors that my research told me the palsy should subside after some time, and that I was just here to make sure there weren’t some crazy things going on I didn’t know about. All of the doctors told me I should be fine after a little while, but the infectious disease specialist wasn’t so sure. After I met all of the doctors individually, they convened to discuss their recommendation, and then in a few minutes the doctor from infectious diseases came to discuss it with me. He said something like this:
“Alan, I know you have been treated with antibiotics, but it is strange that you are suffering from the palsy afterwords, I think it would be best for you to get a spinal tap.”
Immediately, scenes from the move “The Exorcist” flashed through my mind, and I remembered Regan’s undergoing a spinal tap whilst possessed by a demon. This is not a good vision to have. I was scared, and I also knew that operations are very expensive, not a good thing to have when you are already saddled with crippling student loans. I got one of those pains in my throat when you get really scared, I told him that I would have to think about it, in the meantime though, he set the processes in motion to move forward with the spinal tap in the morning.
I asked to see the neurologist again, he had been reassuring, and had told me he would vote against me undergoing the spinal tap as his examination wasn’t as grim. The neurologist had noted that I still had perfect use of all my other appendages. Most importantly, he told me It was very good I was able to slightly move all of my paralyzed facial muscles, albeit minimally.
Lyme disease triggering clusterheadaches
The neurologist also diagnosed me on the spot with Cluster headaches, which I have suffered from since I was a teenager. Cluster headaches have to do with one’s neurology and are quite rare. They may go unnoticed or misdiagnosed for years, and are confusing, fleeting, and complex. The headaches have to due with ones neurology and are seasonal, I keep a journal of mine and typically see them happen every six months, after which I will undergo a month or more of incredible pain that comes and goes, can force me to curl on the floor in pain (even during work in the kitchen), and forbids any consumption of alcohol whatsoever, as it will trigger attacks.
What he thought was interesting though, was that I had begun to suffer cluster headache attacks regularly after I began to show symptoms of lyme. I wasn’t scheduled for another bout of cluster headaches for months down the road, he theorized that the lyme’s damage to my neurology had somehow triggered a cycle of cluster headaches, out of season. This had never happened before.
So imagine this. You have extreme flu symptoms, hot and cold flashes, facial paralysis (I remember someone calling me chef mush-mouth), and cripplingly intense headaches that come and go as they please, which can last for hours and negate your ability to drive or work safely. I felt broken, sad, and alone. Somehow though, I believed that my online research was correct, and that the palsy would leave. The thought of a spinal tap was too was horrible, and after googling the cost of one and seeing a 7,000 price tag, I knew I could not allow it to happen.
For the first time in my life I feared my mortality, and had true thoughts of death, brain damage, paralysis, and worse. I also knew that dwelling on things would not serve me well, and that I trust my gut more than anything. As I have aged a bit, I really do know one thing: gut feelings are much deeper than they sound, and human instincts have been honed over a very long period of time. It reminded me of a quote I like that is a bit dark, but also true.
“When you look long into the abyss, the abyss also looks into you.” – Frederic Neitchze
Trying to keep the thought of permanent paralysis out of my mind, I took the nuerologist’s advice and opted out of the spinal tap. I asked the nurse to call the head of the department prepare for my release, she obliged. Shortly after, he called and spoke to me for a moment. Our conversation went something like this:
Doctor: “Hi, I hear you want to leave”
Doctor: “Ok, I don’t think it’s wise to go against the advice of the infectious disease people, but ok. You have to tell me something before you go though.”
Doctor: “You have to tell me where I can go to find chanterelles”
Reluctantly I told him about an area close to his house, he thanked me and in an hour or so I was on my way. Before I left they gave me a new script for antibiotics, and made sure to tell me to check in with the doctors at another appointment. I felt a bit better the next day and went back to work, but after a few days, the paralysis got worse. The use of the left side of my face was totally non-existent. Eating became a chore, and I could only chew on the right side of my mouth. Also I found that other senses on the left side of my face were getting weird. My hearing was very sensitive, and even slightly shrill noises (like the sound of a saute pan banging into another on the line) sounded like gunshots that echoed painfully in my ears. To make matters worse my left eye became sensitive to light, I would get tremendous headaches after being under the fluorescent bulbs of the kitchen for too long, so I started to wear an eye patch while I worked, which helped.
After a few weeks, I started to feel better. Feeling slowly came back to my face, and before I knew it, I felt physically normal. Sadly, though, I wasn’t. Physically I was ok. Mentally though, I was in another world entirely. It felt like there were cotton balls in my thoughts, a sort of fog that I couldn’t break through. My performance during dinner service started to slip. One night I stared at pans full of cooking food while we plated a party, I remember my coworker putting up 8 or so entrees in the time I put up a single one. My boss noticed, and he could see something was definitely not normal with me.
At our daily meeting where we plan the evening’s menu one Friday, my boss started out by asking me what the changes I had for the day would be. I started speaking, stumbled over my words, and had no idea what was going on with the menu. In front of the entire team he questioned my ability to work and ordered me to go home. I was mortified. I begged and begged to stay, I tried to convince him I just had a momentary lapse. Eventually it was suggested that I just plate salads on the station the interns usually work on busy nights. I was relieved to stay, even though I got referred to as the “new salad girl” all night.
I tried harder and harder to concentrate in the following weeks, and people began to take me seriously again. Once in a while though I would still have blank thoughts, and I occasionally would have pains in my lymph nodes that felt like the lyme, and made me think it was still inside me, waiting to re-emerge and cripple me again. I felt like a shell of former self. I was curious to possible side effects of lyme that involved mental clarity though, so I did some more online digging. Sure enough many people reported something they referred to as the “lyme’s fog”, a residual effect that interferes with your concentration, often for long periods of time.
Once again, life sort of felt like it was returning to normal, then I got another curve ball. It was a bill. Here are the services I received:
- A three hour emergency room stay, where I was given a clean bill of health and told it was ok to go back to work.
- 2 half hour visits with a physicians assistant, one to take blood, the other which ended in the hospital stay.
- My hospital stay, where I refused the doctors advice for the spinal tap, and then opted to go home, which took about 4 hours in all.
The grand total was to be right around 7000. That is over 3 times the amount that I paid for my car, I was devastated. I did some more research and found out there might be some programs I could apply for. I applied for anything and everything that I could. Minnesota care, and a host of other things, but got rejected by all of them. Seems that I make just a little too much to qualify for aid. It’s unfortunate though, because none of the agencies that can help take into account that most of my funds are already tied up by other loans from school. I had never seen a bill so large. It was terrifying.
This week, after four months of waiting, I finally found out I was rejected by the last program that could have assisted me with some of my medical bills. I will go on a payment plan, and live with their yolk around my pocketbook for years to come. I really try to just put it out of my mind, but i’ll be honest and say that all sorts of questions flew through my head in the past few months. I wondered if I should ever go play in the woods again. I wondered why one of my favorite hobbies exposed me to such a disease. I knew what I had been playing with though, and that lyme was a danger. In a way I was almost primed for it, so to speak. It did not make it any easier to stomach though.
It has been a hard year to be grateful for, but I do remember a little something that made me happy though. One late night after work in the summer, when it was still hot and muggy, I was reading some statistics on the computer. The analytical software installed in this website allows me to see specific search terms that lead people to the posts. Using this in collaboration with some other ancillary things has helped me see a more clear picture of the audience I talk to, and has helped me to think of relevant topics to brush up on occasionally. I saw a search term that someone used which led them to my words, here is what was typed into Google:
“When you find a chanterelle in the woods, it’s like magic”
If I get all down in the dumps and wallow in self pity, what good will that do? Nothing can change what happened. It isn’t good or bad, it just is. Sometimes I still feel like the lyme is in me. I wake up and feel the pains in my face, or in my lymph nodes, and it is scary. I refuse to let it get me down though. You cannot allow fear to win, wallowing in depression and isolation help no one. You have to move forward and grow. Keep looking for the things you find magical in life, the simple pleasures that make you happy, whatever they may be. I know now more than ever the importance of searching for those things that can help you, if just for a moment, forget the ugly parts of life.