In the Spring of 2013, I decided to plant a Japanese garden in my back yard. The mosquitoes were bad that spring. I remember having several large bites and even asking a pharmacist if they were bull eye rashes or just large mosquito bites. I was told I just have a mosquito allergy and to use Benadryl. I also had a sore and hot red mark that I thought was a spider bite. First it was just a red bite mark. Then it was hot and had a little black speck in it. Then the black speck got bigger. Finally, I scratched it enough to pull out a little teeny weeny spider. No, I did not. It was a tick but I didn’t know that then.
That summer I thought I had a “summer flu” that never quite went away. By the end of the summer, I was exhausted. Just an average day of activity left me lying on the bed by the time the kids were ready for their evening bath, I’d have chills and flu ache. I’d wake up drenched in sweat. My nightgown would be soaked. The next day I’d be even more exhausted.
One day at the end of summer I went to Niagara Falls for a couple days. I was feeling very tired and anxious. I’ve had anxiety for a number of years so I just assumed it was the drive that scared me. I get anxious in cars since I was in an accident a decade ago. At dinner with my friend and her visiting family, I began to have a panic attack. I’d never had one before and it was truly terrifying. It does feel like you’re dying. My heart was racing, time slowed down and I did everything I could to stay calm and focus on my breathing. I had no idea what was happening. I tried to act normal (my version of normal) as though everything was okay. I was confused because I was enjoying my dinner. There was nothing overly stressful about the occasion. I thought maybe it was due to my low iron. I was also beginning to experience shortness of breath, chest pains, and heart palpitations. I wondered if maybe it was all part of the anemia. I’d even read that anxiety can result from anemia. So I kept popping my daily iron pill.
The fatigue, chest and heart issues, and malaise continued. I had an annual Physical in the fall. I tried to tell the doctor about my various issues but got cut off. She told me I was only allotted 20 minutes and that included the examination. I said “but I’m only sharing everything because I thought maybe you’d see a pattern in all the symptoms.” She said “ok, tell me one more and then we’ll move on”. Um, ok.
I was feeling so guilty. It was my last year with my kids at home. My daughter was in half day kindergarten and I had all morning alone with my son. I wanted this time to bond with my son. I thought we’d make crafts and play games. I’d make his alone time with me special. Honestly, I think most of those mornings, I napped while he watched TVO cartoons. He didn’t mind because he got to watch his choice of show without his sister arguing with him. He’d try to learn from the shows as they were educational and he’d ask me all sorts of questions and I’d try to hold a conversation with him in my half-asleep stupor. We did occasionally paint, make crafts, scrapbook (his favourite) and play games but not nearly as much as both of us would have liked.
At the same time I was becoming more focused on the increasing pain in my left knee. I could barely walk on it. The leg would give out. I wondered if I’d twisted something. It wasn’t until I felt a lump on the underside of my knee, that I went to see the doctor. She couldn’t see what would be wrong but agreed I should get an ultrasound. The lump was a lipoma and after seeing a specialist months later, I was told it did not need treatment and it wasn’t likely the cause of my knee pain.
Despite all these issues, I did manage to have a lovely vacation at Disney World with my family. It was exhausting and wonderful, all mixed together!
Somewhere in that winter, I also went to the doctor about the possibility of fibromyalgia. Or maybe celiac disease. Or whatever might be the cause of my issues. Fibromyalgia was dismissed as I didn’t have all the “tender spots”. The doctor didn’t want to test for Celiac. I can’t remember why. Later that year, she did put me on a Gluten-free diet when I said I was still having the same issues.
I also visited the eye doctor about the sudden onset of migraines. I’d get multiple auras in a day over the period of a few days, every few months. I felt a lot of glare all the time, and found night driving difficult. Everything seemed too bright.
I had career ambitions and was working on various plans (teaching online classes, designing, and illustrating). Again, I felt such guilt. I couldn’t concentrate on my work. I couldn’t focus on writing proposals. It was a miracle I was able to accomplish the things I did finish. I felt like I was ruining my reputation with some colleagues I deeply respected. I’d been dependable up until now. Why couldn’t I get my act together?
The chest pains, breathlessness and feeling of vertigo and dizziness worsened. In the Spring of 2014, I went to see my doctor and he told me I’d tried very hard to manage my anxiety without drugs (counselling, meditation classes, etc.) but I really needed to take medicine to help me get to a place where I could cope. Then when I was less anxious I could wean off the drugs. If the drugs didn’t help the anxiety, we’d know it was something else. I agreed. I had a variety of side effects but I knew that was common so I wasn’t too concerned. I’d been warned I’d get very tired and have hot flashes. No problem, I could handle it and I did. For the next two years, I accepted that my quality of life was diminished due to my fatigue. I accepted it because the drug had helped with the anxiety and the chest and heart symptoms were almost completely gone. I figured the issues must have been anxiety all along.
My kids were both in school full time the Fall of 2014. It was my first time with the house to myself in 6 1/2 years! I was sad and excited… bittersweet. I was sad that this phase of our life was over, but I was excited to be able to focus on my art, and to have a moment to myself. I had so many projects I wanted to finally take on and complete.
Instead, I slept. I couldn’t help myself. I’d try to pick something to do and I’d dive right in, get exhausted, take a “quick” nap, and find myself waking up just in time to get the kids off the bus. I was designing digital art during this time and writing blog posts. I wasn’t completely inactive but I wasn’t doing nearly as much as I had hoped. Every deadline was a struggle as I fought to keep my eyes open and see through the brain fog to brainstorm new designs.
In the Fall of 2015, I decided to become more active at the kids’ school. I became co-chair of the School Council (PTA). Some days I did my design work. Some days I did my council work. Often, I napped. I’d forgotten what life was like when I had energy. I assumed it was the anxiety medication. I assumed it was turning 40. I assumed it was sleep deprivation from having kids. Too many assumptions.
In the Spring of 2016, I felt I couldn’t do my design work anymore. I had tried to work on my proposals for other work projects. I decided to hold onto one small job I do every month. I wanted to be “present” for my kids in the summer and I couldn’t be juggling work and parenting.
It was then that my Mom mentioned reading Ally Hilfiger’s book “Bite Me“. She said Ally’s struggle reminded her of me. So I got it out of the library and read it too. All the pieces of the past three years fell into place. OMG, do I have lyme disease? Suddenly, it was all I could think about. I read the Horowitz Lyme-MSIDS questionnaire by a leading Lyme Literate Medical Doctor (LLMD) Dr. Richard Horowitz.
All the issues I’d seen the Doctor for in the last three years were on this list. As well as several things for which I never sought help. I had the classic onset of symptoms. Except I never knew if I had a bullseye rash or a tick bite. WAIT A MINUTE… in a flash I recalled that spider bite and the horrible mosquito bites. At the time, I knew about bullseye rashes made by ticks. I didn’t know that ticks burrowed into your skin. I didn’t even know what a tick looked like. Suddenly, it was very clear. I didn’t know if I was bitten in my backyard or at the lake where we sometimes visit. It didn’t really matter.
I went to see my doctor and told him my fears that I might have Lyme disease. I handed him the completed Horowitz questionnaire. He asked me why I would think I had Lyme disease and I explained a short version of what I have written here so far. I also mentioned the neck pain I’d seen him for, the ringing in my ears for months on end that he also treated me for, or the lump in my breast and colostrum that had no business appearing. I told him how I had trouble finishing thoughts, fumbled with words, couldn’t concentrate on books or TV, smelled cigarette smoke when there wasn’t possibly any around, dropped things all the time because I could no longer fully grasp items, couldn’t tolerate loud noises or bright lights, and how my whole body ached. He diagnosed me with Chronic Fatigue Syndrome and advised me to get tested for Lyme Disease and Co-infections (Babesia, Bartonella, etc.) with IgeneX.
By the end of October, I revisited the Doctor with my results in hand. He diagnosed me with Lyme Disease. He gave me the name of a LLMD in New York State. She was expensive and taking trips there would be costly for us. I did a little research of my own and found out a reputable Lyme Literate Naturopathic Doctor works in Ottawa. I immediately booked an appointment.
The first week of December, I had my appointment with the LLND. I was so eager to finally get treatment. She was better than I had hoped for! She assessed me and prescribed supplements and asked for me to have a Doctor prescribe certain antibiotics. She uses a variety of methods to diagnose illnesses. With my health background forms, the questionnaires she’d asked me to fill out in advance of the appointment, the test results I’d given her, a physical examination, and auricular assessment, she was able to diagnose me with Multiple Systemic Infectious Disease Syndrome (MSIDS). So basically, I have Lyme, Babesia (similar to malaria), Bartonella, and a bunch of other issues suppressing my immune system leaving me sick and vulnerable. Each with its own long list of symptoms. Some of the issues can be resolved but the Lyme can only be treated into remission. It will be a long process.
One of the problems with Lyme Disease treatment is that you get worse before you get better. When the bacteria is being killed off, toxins are released into the body causing a Jarisch-Herxheimer Reaction. A “Herx” happens when your body can’t rid itself of the toxins as quickly as the bacteria is being killed off. To counteract the risk of a reaction, my LLND gave me a schedule to add new drugs and supplements slowly. I am now on everything and for the past two days, I’ve had constantly tingling hands (think pins and needles type stuff), hot flashes and sweat, sudden chills, dizziness, and physical fatigue.
I drink lemon water and take epsom salt baths to aid my body’s detoxing. I’m taking supplements that also help with the detoxification process. I’m struggling to take all the pills at the right time. I use an iPhone app to help me and it reminds me to take pills at 12 different times in the day!
In addition to the pills, the LLND prescribed a new diet for me. It’s horrible! The only upside is that I’ll lose the weight I’ve gained since all of this started. I’m still trying to figure out exactly what I can and can’t eat. It’s confusing because I was given some specifics about the diet and then also told to follow the Wahl’s Protocol Diet. So, my understanding at the moment is that I need to be sugar-free, gluten-free, and mostly dairy-free. I can’t eat potatoes. I think I can’t eat tomatoes but I’m not completely sure. I’m pretty upset about the potatoes. I can’t have vinegar, except for cider vinegar. I can eat sweet potatoes! I can eat avocados. I can eat two pieces of fruit a day.
The worst part (aside from the sugar and potatoes limitation) is that I’m supposed to add meat to my diet. I’ve been vegetarian for 21+ years! Wow, wow, wow. So last week, I dragged myself to the butcher that gets their meat from local farms that are organic, pesticide-free and run like farms rather than factories. That’s the only way I can make peace with this change. I want to know those animals had at least a semblance of happiness before they were slaughtered. I’m not thrilled but I’m prioritizing my health as more valuable than the life of the chicken. I’m not sure that’s fair or right, but that’s what I’ve chosen to do.
I’m still having my morning coffee, sweetened with stevia (on my ok list!), with a splash of cream (pretty sure that’s a no-no). I fully intend to cheat on Christmas Eve and possibly Christmas. Hopefully, I don’t regret it!
So, that takes me to now. My husband is very supportive and loving. My children are struggling to understand and accept that their Mommy is sick. It pains me to see my daughter’s anxiety over this. We’ll figure this out. We will.
I’ve made peace that I’m not crafting my way through Christmas like I usually try to do. No December Daily, no fancy photos, no Christmas crafts, and no sweet treats. I cut back on the decorations. I didn’t write Christmas cards. I just can’t do all those things right now and that is okay. Right now, the priority is to get better and spend time with my family. My biggest goal for the holidays is to play board games with the kids. Time together is all that really matters. And sleep. That matters too!
Thank you for reading my story. I’m sure if you were to read back over my blog posts the last few years, there would be moments where it was obvious something was wrong. Hopefully my future blog posts will guide us to a place where something is going very right! I’m going to try to write more about what I’m experiencing. My design work for the most part is on hold. This blog won’t have lots of scrapbooking, designing, or art projects for the next while. Follow me along for my journey and hopefully the art will return sooner than later!
Merry Christmas and Happy Holidays! May you have moments of great peace and joy in the coming year!