Now into my ninth month of treatment I wanted to write an update as I’m potentially approaching the end of my IV med treatment. This is also a good time to reflect on the last 12 months; it has undoubtedly been the scariest, most unpredictable, and also most humbling year of my life.
In January of last year I thought it would be interesting to start collecting all of the empty med bottles. These are 12.5 months worth of meds, not including IV supplies – that would have required countless garbage bags on top of this. The photo isn’t an advertisement for Chatelaine either, but I wanted to use something to help get an accurate idea of the size.
For those of you who’d rather listen than read, I’ve also uploaded a video that condenses all of this into 6 minutes. I have hard time being concise, so grab a coffee or tea and settle in before you start reading.
By the time January 2016 rolled around, if we hadn’t already believed it – there was no denying I was sick. Something was very wrong. At the beginning of January 2016 we went to the Mayo Clinic, hopeful and desperate for a diagnosis. At the cost of $35K over four days I’d had a MRI, CT, a EKG, echocardiogram, bone and joint scan, nerve testing, various X-rays, and countless blood draws. From that we had nothing. No diagnosis. We left Rochester feeling despair and without hope.
We came home that night and started yet another google search, landing upon Lyme Disease one more time. We came upon the trailer for the documentary “Under Our Skin”. The light bulbs started going off – we rented the documentary on iTunes and as I watched I had tears in my eyes. It seemed so obvious, this was it… we were certain I had Lyme Disease. We learnt about lab testing and quickly had my blood sent off to the lab Igenex in the USA, but we had to be patient, results would take about 4-6 weeks.
At this point I had lost a lot of independence. I was deteriorating fast, 75% of the time I was unable to sit up or stand without assistance. I was unable to walk, lift my head or my arms. I was in excruciating pain. I was having relapsing fevers, severe pain in my joints and tendons, I began to have body and facial spasms and it felt like my muscles were slowly hardening, limiting their movement and my strength.
At the end of January, I’d travelled to see a doctor of Internal Medicine. After days on end of fevers and now not being able to lift my legs, he gave us hope again. He was genuinely concerned; this was puzzling to him but you could tell he liked to solve medical puzzles. To further rule out malignancy he wanted to move fast; after a call to the hospital he had me booked in the next morning to do a bone marrow biopsy. This was also when I found out that my pain-tolerance was well above the average person. Many times he kept asking if I was ok; and I was. If I had to rate the pain I was in every single day, it was a 10/10. When putting a number to the bone marrow biopsy, I’d say it was a 3. After the biopsy was done he also entertained the idea of Lyme Disease from when I was bitten back in 2014. At that point he hadn’t ruled it out and decided to treat me with a short course of oral antibiotics. Before we left he passed Stephen a business card, he’d written his personal cell phone number down and encouraged us to call if there were changes or concerns. A week or two later, now into February with continued deterioration, more fevers and difficulty breathing, Stephen decided to make the call. The doctor didn’t hesitate; he said he was making a call over to the hospital and getting a bed ready for me.
On February 14, 2016, one year ago from tomorrow to be exact, I was discharged from the hospital (which was also four hours away from home). I spent four nights there, for three of those nights I was in isolation, so leaving my room was frowned upon – if I did I had to wear a mask and gloves… so I just stayed put.
Upon being discharged we still had no idea what was wrong, I had a team of residents studying my case along with the doctor. Before we left one of the last things we asked him was “do you think we’re way off base with Lyme Disease?” and he replied, “well, we’re still waiting on the lab work you had sent off. I think we’ll have our answer soon.” We left feeling slightly reassured that there was still a possibility of a diagnosis.
While I was fighting my way through all of this the world outside kept going. This is true for anyone battling a chronic disease; we miss out on a lot. I only left my bed and the house for doctor appointments, so unless I had visits from a few exceptionally great friends, I really only saw my husband over the next three months. I missed one of my best friend’s bridal shower, bachelorette and ultimately her wedding which took place while I was in the hospital and all of this took a toll on our friendship. Illness doesn’t just affect the individual, it affects everyone around them. Friendships started changing, some deteriorating, some became distant, while others flourished and new friendships formed. I was humbled and at a loss of words for the kindness extended to us from our community and even from people we didn’t know.
On March 3, 2016 I had a call from my doctor; the results of my Western Blot Test had a positive result by CDC standards, and I’d now seen my LLMD for the first time. I was diagnosed with Lyme Disease, Bartonella and Babesia. He looked me in the eyes and said,
“you are sick, very sick. By the time most people get to me there aren’t in this bad of shape.”
I wasn’t ready to start treatment yet, we needed to get my body into a more stable condition which I did over the next three months.
June 2016 came around and I began IV treatment through a central line. After daily, sometimes twice daily IV’s the next eight months seem to fly by. Part of that may be due to how frequently I travel back to Washington where my LLMD has his clinic. In the last 11 months we have travelled to Washington nine times, for us it requires a lot of travel: a four-hour drive, two flights, each roughly 2 hours each, and then a 40-minute drive from the airport. For the first 6 trips I had to use a wheelchair to get through the airports.
It has now been 268 days of IV’s from the beginning to today when I post this blog. It is almost hard to believe; I’ve started to see the light. I came to this realization during our October visit, in the exam room I looked over at Stephen and said “They saved my life. I know it sounds like I’m being dramatic; but they did.”
Truth is, I have no idea what I’d look like today if I hadn’t been diagnosed and picked the doctor I did. That’s not to say other doctors don’t save other Lyme patients, many do… but being very honest – I don’t even know, or want to know where I’d be at today. Stephen and I had this chat a couple weeks ago, I knew if nothing had changed I’d be almost completely dependent for many, if not all aspects of care and daily living. He assured me he still would have taken care of me, and at that point my eyes filled with tears and with a shaky voice I said to him, “I wouldn’t have let you. You shouldn’t have to, it’s too much of a burden.”
If you know me well you know that my emotions are usually very well under control. It takes quite a lot to make me cry, I’ve shed only a few tears over the year… so when I started to crack duA ring this conversation Stephen said to me “look, your upset – it’s ok to have emotions.” I went and snuggled up next to him, tears running down my cheeks; all l could think of is how far we’d come from this time last year, and how lucky I am.
Next week I head back to Washington to see my doctor. We’re at the point where they’ll decide if the IV line will come out and I’ll transition to oral antibiotics. I’ve had mixed emotions over this – and to be honest, anxiety. As much as I want this foreign object out of my chest, I worry we’ll be too eager to remove it and it’ll set me back. Not knowing what to expect next is hard, I’ve done a fairly good job at trusting in the unknown, having blind faith up until now.
My biggest hurdle is when I get into my own head and start wondering about things there isn’t an answer for. I want to know when this will be over, when I’ll get back to normal… will normal be different now? Will I be able to run for two hours, do headstands, work and remember how to do things? Will I start to remember words and how to spell again? What I want is something tangible. but this is a highly subjective disease, there is no quantitative means of measuring progress. This is something I’ve come to accept, but it is also confusing to others when they ask about my progress, I uploaded a video on my YouTube channel explaining this a bit more, you can click here to watch it.
Life is bittersweet. We experience unexpected set-backs, sometimes they are small, other times they’re life-changing. I always remind myself that nothing is random, today I had a feat of victory. My last day of work was December 8, 2015. I was on short term disability until April 2016 and at that point I had to apply for long term disability. After waiting four months for a decision, my claim was denied on the grounds that my symptoms weren’t disabling enough to prevent me from working. I was devastated; it wasn’t only a financial blow, it felt like a mockery of this disease. I submitted an appeal and today, another four months later I received an answer: my long term disability has been approved. Not only does this relieve a lot of financial stress, it feels like a small victory for Lyme Disease sufferers, it’s an acknowledgement.
Looking back over the year we celebrate the small accomplishments, I continue to be incredibly sick while on meds. I tend to sugar-coat things, but if I am being transparent about this, last week was probably the worst week I’ve had in these last 12-months. I was on meds and what I can only assume was herxing like never before, vomiting more times than I can count, weakness, joint pain and high fevers spanning over 6 days. We made a trip to the ER because of the never-ending high fevers; we were concerned my IV line could potentially be infected, a complication of any IV line, PICC or central – high fevers should be followed up with. At this point I’d slept very poorly over the last four nights because I was fevering around the clock, either shaking to the point my teeth were chattering or sweating profusely. I did my very best to consume fluids to prevent dehydration, but it was likely inevitable with the fevers and vomiting. By Saturday night I’d been sleeping 18 or so hours, Stephen woke me up and put me into the bathtub, gave me Tylenol to help break yet another fever. He’s so great that he even brought me a glass of ice-cold water, and slices of banana and avocado. I wasn’t feeling ok though; I had one day (Saturday) off meds before starting another 5 days. I said to him as he placed a cold cloth on my neck that I didn’t think I could do it anymore.
This was the first time I said these words and truly meant them. I felt like my body had crashed, physically and mentally. I’ve never felt so unsteady, unstable or weak. All of this also comes along with the stress of owning and running a business while we try to deal with whatever comes our way. Despite what many people think, owning a business can be very difficult at the best of times, let alone at the worst of times. It seems as though we just run into one issue, then onto the next…. but I continue to remind myself that faith in the unknown has carried me this far and holding onto that is all I can do when a lot still remains unknown. And as a side note, when I woke up Sunday morning I was able to start the next five days of meds, completing my full med cycle.
With Valentine’s Day tomorrow – I also want to wish my husband, the other half of this love story – this twisted and crazy story that may as well end up becoming a Lifetime made-for-TV movie … I love you. Thank you.
(As time goes on I find it harder to come up with ideas to write about, so please- if you have any suggestions or want to know more about something … leave a comment!)
There is also a great campaign right now called “Lyme Letters Canada”, if you have 10 minutes I’d like to ask you to write a short letter. Lyme Letters Canada needs help from patients, families, friends and concerned citizens.
These letters are being collected and personally delivered to Minister Philpott in a face-to-face meeting. You can read more on their website by clicking here.
Any kind of letter is sincerely appreciated; they don’t have to be long, even just a paragraph! Hand-written letters are always more personal, but emailed letters are just as great. Please head over to their site and help us out but because these letters are being hand-delivered to our Federal Minister of Health, there is a deadline: they hope to have all letters in by March 15, 2017. Thank you for helping us in the fight against Lyme Disease.