Writing this post brings back memories of my days (which were now long ago enough I don’t want to tell you how many years its been) of being in University; lap top balanced on my knee while I work to meet a deadline. To be fair, I actually finished assignments ahead of time. I’m not a procrastinator. Nothing has changed in that sense, but my health – or lately – lack-there-of, has indeed changed and forces me to put off anything that is non-essential.
I wanted to publish this post weeks ago. The main goal was to post it before I go back to Switzerland to my Clinic.
Where am I writing this right now?
An airport lounge in the Toronto airport. Sipping on a glass of wine that I will ultimately regret very soon. Lyme Disease and alcohol really don’t mix well… but when its free? And you have a 6 hour layover? You just do it. Live a little now, pay for it later. Sometimes you just have to pretend to be “normal”.
Those of you who know me probably remember that it takes me forever and a day to write a blog post. When I started this one it was at the beginning of March and by the time I’m publishing it, it will be somewhere around April 20th.
So when I start the next paragraph with “yesterday” I am now actually referring to a day way back-somewhere around 40 days ago.
Yesterday (March 7th) brought an anniversary that each year I remember without needing to see it on a calendar. Well, that isn’t entirely true. Lately I don’t know what month it is, let alone the date – so I only remember this anniversary if I have taken a glimpse at the calendar to remind myself of what month we’re in. It is always in my head, and I do hope that one day I’ll forget about it and leave my own personal journey with Lyme Disease in the past.
On March 7, 2016 I had a phone call from my doctor. The results from my bloodwork at Igenex came back. She told me that the report was really long, and read the results. I tested positive, by the Igenex and CDC requirements for Lyme Disease. I also tested positive for Bartonella, and later when I saw my first LLMD he made a clinical diagnosis of Babesia. It was a triple threat.
You could say that my Lyme journey officially began in 2016 when we finally had the answer, but really – it started within weeks after that bite back in April 2014. I was bitten on the back of my shoulder, near the armpit (they like warm places, and this is one area you should be sure to check). My husband saw it and sent me to the Clinic where I saw a nurse practitioner and she thought it was a spider bite. I wasn’t given any treatment, other than ointment. I knew diddly-squat about Lyme Disease or that my life was going to change.
It was a matter of weeks and I became so exhausted and started to get a sore throat – the kind of sore that keeps you from sleeping at night because it feels like your swallowing knives. My glands were swelling off and on. I thought I was just fighting a cold. For months. In that time my joints started to hurt. Then around four months after that bite I woke up and couldn’t lift my arm. Another month went by and more joints were affected and then the other arm as well.
From there it was a hurricane of weird symptoms that came without rhyme or reason. A lot fit into the rheumatology category, so that was the first of the specialists I saw.
Fast forward to summer 2015 when I started to have chest pain and learnt that I developed a heart murmur. By this point all of my joints were affected. Some days my TMJ was in so horrible I had to resort to liquid diets; smoothies that were jam packed and nutrient dense because I couldn’t open my mouth to take a bite of solid food. I actually spent Christmas Day 2015 alone, my family was in Arizona and my husband drove to the city to pick up his parents from the hospital. I had a couple invites to dinner, but my jaw was locked shut. I did what any normal 20-something would do and supplemented Christmas dinner with mimosas. That is “normal”, right?
I was in extreme pain. I became so weak and immobilized that I couldn’t get from the couch to bed without being carried. I couldn’t lift my own head to swallow medication. My husband brushed my teeth. Then one evening, if my memory is correct it was around the 20th of January, 2016 I tried to stand up from the couch and my legs would not move. No matter how much I willed them to shuffle, slide – anything. They weren’t responding.
We saw countless doctors, both locally in Northern Ontario and Manitoba – and we also travelled to the Mayo Clinic, desperate for answers. None came. In February 2016 I was hospitalized for four or five days while they did more tests, nothing came back that helped with a diagnosis. I had a bone marrow biopsy, and still nothing. Then Mach 7th rolled around and we had an answer. Finally.
How did we find Igenex and send a blood sample to them?
We were grasping at straws by this point.
I had so many tests: CT scans, MRIs, echocardiograms, EKGs, xrays, bone scans, the list goes on. Plus, I’d been tested locally for Lyme Disease, and it was negative. At that time, we hadn’t done research on Lyme Disease and I didn’t know that the testing we use in Canada can often give a false negative.
The night we got home from the Mayo Clinic my husband was searching on Google and he found a few stories from other people’s blogs about Lyme Disease. It sounded too familiar. We rented the documentary, Under Our Skin, from iTunes and while I watched it tears fell down my cheeks. The documentary followed a few people, and watching one of the girls was like looking in the mirror. Pieces of the puzzle started dropping down on us like a hail storm. This made sense, it had to be it, especially when nothing else was diagnosed over the last two years.
More reading led us to Igenex. We figured at this point it couldn’t hurt to try, I’d had enough blood draws – what was one more?
At this point I learnt about the Horowitz Questionnaire and I scored ridiculously high. While I waited for the lab results I starting researching different LLMDs, booked an appointment and then the journey really began.
I had to stabilize a bit before starting IV antibiotic treatment in June 2016. It took three months to reach a proper dose of lyrica and lamictal to help with the burning neurological pain I had. The course of IV antibiotics was estimated to take 9 months. Soon that doubled, and I was into my 18th month of treatment-at that point I had enough. I decided to pull the plug. Literally. I asked to be referred to a local surgeon to remove the central line that was put in while I was in the United States.
There were a handful of setbacks throughout my IV antibiotic treatment. I’d get ahead. Then fall back. It was a never ending up and down cycle that fluctuated like the stock market.
After I called it quit with IV antibiotics (you can read about it here), I took a leap of faith and went to a Functional Medicine clinic in Switzerland. That experience itself was full of ups and downs, and I documented the whole thing in a series of blog posts:
Although my first experience with a couple doctors at the clinic didn’t meet my expectations, I found myself getting to know and trust one of their other doctors who continued to stick with me through the following months, by regular email and phone contact. Eight months after my first visit we were flying back again. I also blogged about my second visit to Paracelsus in these posts:
If you read my last blog about my experience with having a port-a-cath placed you might remember me telling you that I went a couple of months without infusions. My veins continuously collapsed. Stick a needle in my arm and they’d deflate and disappear. By the time I restarted infusions in January my body was going through what seemed to be a never ending flare up.
To summarize January and February 2019 all I need to say is that it was hideous and horrible.
I was lucky to have two days out of the week where I wasn’t overwhelmed entirely by symptoms. I had some of the worst joint pain yet, even the slightest touch on my knees or elbows sent fire lacing through my veins. A new, strange symptom came up… and I still don’t know exactly what it is – whether its tendons or we should just chalk it up to soft tissue – I get these raised, hardened areas all around my ankles and behind my knees. They also turn really red and cause a lot of pain, plus restrict fluid and blood flow.
One morning, after putting off washing my hair for a little too long I knew I couldn’t avoid it any longer. This is a fairly normal pattern. I wash my hair on days when my port is not accessed, I could still tip my head over the tub to wash it – but it is bit of a hassle. I basically have to decide based on how I’m doing if, and when my hair is going to get washed… and please, don’t get too grossed out. My hair still gets cleaned every 4-6 days – even if that means asking for help.
Anyway, one morning I decided I needed to get the whole hair situation out of the way, so I rallied up all my energy to wash, dry and style it. Yes. Even style it. My whole life there has always been something about my hair; I could be wearing sweats and have no make up on (which is also normal) – but I always feel better when my hair looks half-decent. This is a trait I no doubt inherited from my great gram, who had her hair done weekly up until she passed away at 90. Whenever she was admitted into the hospital, she’d always ask us how her hair looked, and we’d always be making touch ups with a curling iron for her. I suppose if I am lucky enough to have another 60 years on this planet, even if I’m not always lucid like her – I’ll still care about my hair.
Let’s go back to this story about washing my hair. As I am getting to the point of plugging in the iron and styling it, all while ignoring the pain in my ankles and feet I finally rolled my pant legs up and looked down. I knew I pushed myself way too far. My legs were mottled. If you aren’t sure what that means, google it.
No flipping wonder they hurt. I got myself back into bed and raised the foot of my bed up as high as it could go, with an extra pillow stacked under my legs for more height. It took a few hours to recover from this to the point that I could walk to the kitchen and get myself food or a drink. If I stood for longer than five minutes it would start all over again. This one symptom in particular has been happening at least four to five days a week.
Then there was the other “normal” stuff that makes a person feel miserable, I was having a lot of issues with the tendons of my shoulders again, making it impossible to change into my PJs on my own. I have also started to develop nodules on my tendons in my forearms on a regular basis. These cause pretty extreme issues with mobility and pain all the way down to my fingers. I had instances of synovitis (inflammation of the synovial membrane, which is painful, especially when the joint is moved) in the past but lately they seem to be very regular.
To put the cherry on top, this happens predominantly in my right hand – and I am right handed. Imagine trying to hold a pen and write when you can barely hold a pen.
It is pretty normal that when I’m not doing and five pm rolls around I tend to be in some extreme pain of the neurological sort. I do take Lyrica and Lamictal for neurological pain, and overall it works – except during the flares. If you’ve never experienced it, I hope you never have to. It feels like fire and sharp pieces of glass are flowing through your body – burning and scraping it from the inside. It feels like you’ve rubbed your skin raw with sandpaper, and even the blanket laying on top of you seems to hurt. Getting a good night sleep is impossible like this, which propels the symptoms to get worse when you’re not getting restorative sleep.
So – basically, things were really awful in January and February. This also brought about a big shift in my mood that I hadn’t experienced in these past four years. I was extremely miserable. Mentally and emotionally, I couldn’t handle these bad days anymore and things got dark.
It isn’t exactly easy to tell the world this part of my story – but I think it is important.
All of my blog posts tend to have a silver lining and mix of humour to them, simply because that is my personality. I’m fairly easy going, light-hearted and shamelessly sarcastic.
But it is changing. This change is normal for a lot of people who are suffering from a chronic illness over a long period of time. The reason I am sharing this part of my story is for other people battling this disease who are reading my blog. A lot of what we see on social media can make it look like everyone, even those with a chronic illness have their $h!+ together 24/7 but it is rarely true. And it is a-ok to be honest about that. And it is more than okay to seek help for it too.
I have been attending our local mental health program since the summer of 2017 and I am so glad I finally called and referred myself to a counsellor. But in 2019 things changed, my counsellor took on a new role within the program and I was moved to someone else. I have to say that I am lucky to live in a small town and I already knew a bit about my new counsellor and I knew we’d be a good fit. Finding someone you can talk to and feel comfortable with isn’t always easy – but I have to tell you, when it is in a setting where the person is trained and educated for this, it is actually easy to open up. If I were to try to sit and have the conversations we do with a stranger on the street I would fear their judgement, pity, and all of those other things we might expect when we unload all of that mental and emotional baggage.
Talking to someone professionally is different
1) they are usually in this job because they’ve chosen to this career path because they want to help people through their struggles,
2) they’re unbiased and nonjudgmental,
3) you don’t have to feel guilty talking about yourself, that is the purpose of your time with them
At my final appointment with my last counsellor I wanted something to work on outside of my appointments. Talking while I was there was great and helpful, but I felt like I was slipping into a darker place. I was losing parts of myself and shadows were slowly creeping in. She gave me a “Chronic Illness and Depression” workbook and I thought it wouldn’t apply to me. Was I depressed? Nah. I really doubted it. That booklet sat around for a solid six weeks or more before I cracked it open on one of those days I was laying in bed with my feet raised up.
It opened a can of worms. That workbook was a slap in the face. But it was a good thing, and I am so glad I finally gave it a chance. It has been a couple months now that I’ve been clawing my way through this workbook and I do think it, with the help of my counsellor has been incredibly helpful.
We’ve come up with a new strategy that really works for me. On those days where I feel emotionally and physically horrible I have some obsessive, intrusive negative thoughts. I cling onto negative things, I feel like I want to be angry. I want to verbally assault someone. Yes, I know that isn’t going to solve my problems, and I have enough self awareness not to take it out on anyone else.
What is this strategy?
I write down my thoughts, I fill a page with all the ramblings of my brain. Next I look at all of those thoughts and I underline the undisputable facts. After you do this you’ll often see that you can fill an entire page of thoughts but very few of those things are facts. Why I am worrying about the “what ifs”? We’re also identifying my “catch” words and I am making an effort to replace them with a more positive self-talk.
I’ve found the last two weeks that my mood has been better, even when I am in so much pain I actually cry.
Crying because it is that intolerable is not normal for me. I can usually work my way through it, but it has been so bad lately that I cry. There are days I wonder if I can do this anymore. I wonder if I am ready to just give up. I don’t want to keep seeing doctors. I don’t want to travel and spend our money on doctor appointments and medicine. When I have day after day of horrible pain and I’m unable to do the simplest things for myself, my mind goes back to where it was before my diagnosis; when it is just so bloody hard that I would totally accept falling asleep one night and this disease just taking me. At least it wouldn’t hurt so much anymore.
But that isn’t what I want. I want my life back. I know even on those bad days that it just isn’t in me to give up. I’m not ready to give up. Not yet. Probably not ever.
Why have I been so sick again these past four months?
I ran out of my infusions sets. These make the world of difference for me. I tried to order them from my clinic in Switzerland to find out that they will no longer ship to Canada because of “issues with customs”. Instead, my husband’s cousin (who lives in Switzerland) picked up my IV sets and mailed them to me. They’ve been sitting at Canadian Customs for five weeks and three days while I get worse by the day.
Is the issue with the medications in those IV sets? I highly doubt it. I’ve had them mailed a handful of times in 2018 without any issue. Instead, I think customs is just backed up and slow. We’ve gone so far as to meet with our local MP (member of Parliament) to seek his assistance, but so far those meds still haven’t moved.
This is the reason I am going back to Switzerland. I’ve regressed a lot without meds and it appears to be the only way I am going to access them.
Our goal for this visit according to my favourite doctor is
“The crux of your care is focused on removing “critters.” Naturally, your energy will rebound healthfully if you are not mentally and physically plagued by ailments. Hence, critter extermination”
Paracelsus now offers extreme hyperthermia. Induced fevers that surpass 41C – which I still haven’t had the opportunity to ask how you can avoid brain damage and strokes at this temperature, but I know this particular treatment has been around for years, so clearly they’ve figured it out. To do this type of hyperthermia you’re completely knocked out, just like having surgery. My first day at the Clinic is in four days, so soon we’ll see what the plan is and like usual, I will keep a journal and share it here with you – should you find it interesting enough to read my painfully long blog posts.
If you’ve made it this far, thanks for sticking with me.