We All Have a Story

We all have a story.  We all have our own unique and incredible life experiences, some are positive and some are not.  I believe that all of these experiences help to shape who we are, and who we grow into.  I also believe that the more we can share, the more we can help others going through similar experiences. We can feel less alone.

This is my story. I created my blog to help others that deal with chronic illness, autoimmune, and other medical issues; you are not alone. It is also a way to help educate others on a wide range of health and wellness topics.  I will also share parts of my life in the beautiful Rocky Mountains in British Columbia, Canada.

My health problems began when I was a child. A lot of my problems were brushed off as just my nerves, being a kid from a broken home.  In my teen years, I was sick a lot…. just generally unwell.  I caught every cold, flu, or bug that was going around. I always seemed to get more sick than others with the same bug, and for longer periods of time.  Some illnesses, such as chickenpox and mononucleosis, I had multiple times.  In my mid to late teens, I started developing a lot of lower abdominal pain.  My doctor continued to brush it off saying that I’m sensitive. At 16 or 17, I requested a female doctor (as a way to get a second opinion without offending my GP). 

The Doctor Who Listened

My new doctor was a pediatrician, so I could only see her until I was 18. I was so grateful for the new perspective on my health..  She listened to everything I told her, something I was not used to from doctors.  She took me seriously and started ordering tests and imaging. 

The imaging came back showing that my lower abdominal pain was being caused by ovarian cysts. I currently had one measuring 7cm by 5cm.  She said this was a recurring cycle of them growing until they burst, and then the cycle would repeat.  I was so relieved to finally have a reason for my pain, and to know I wasn’t crazy!  Have you ever been through a medical situation where you know something is wrong but everyone tells you you’re fine?  It’s incredibly frustrating, and makes you feel like you’re going crazy!  This was my first lesson in learning to advocate for myself. Little did I know how valuable this lesson would become in my life.

Chronic Erythema Nodosum

Once I was 18, I had to go back to my original doctor.  I asked him if there was an option for another female doctor. Luckily a new one joined the practice and I was able to make the switch.  Lucky for me, this doctor also took me seriously. 

During my late teens, I developed a rare condition called Chronic Erythema Nodosum.  This is not a disease in itself, but is a symptom of a list of diseases; which makes it tricky to figure out.  The only tests that came back abnormal during these painful flares were high levels of ASOT (Antistreptolysin O Titre), which are your strep levels in your blood.  Mine would be extremely high during these episodes.  I got bounced around to different specialists, and no one really could figure me out.  They would always bring the medical students in to see, as it was a rare opportunity for them. 

Eventually, the protocol became taking NSAIDs (non-steroidal anti-inflammatory) regularly, and taking antibiotics for every flare.  The flare-ups came more and more and I was taking a ton of antibiotics and NSAIDs. I realized that this was a band aid solution and not a fix.  When I got sick with bacterial infections, I was needing antibiotics for longer periods, or in stronger doses. I realized that I was becoming resistant to the antibiotics.  I knew that this was not a solution, and was only causing more problems. I realized it was time to take charge of my health.

The Doctor That Changed Everything

I went off the NSAIDs and only took antibiotics when absolutely needed.  Advocating for further testing and further follow-ups was imperative.  I struggled to be heard, as my doctor kept changing, and no one was fully familiar with my complex case.  Finally, a permanent doctor joined the practice, and she was the best thing to happen to me thus far.  The new doctor listened and took me seriously.  She did research and came up with new ideas. When it was out of her scope, she would refer me to whatever specialists were necessary.  She refused to give up and sent me to a whole round of specialists every year, until we could figure it out.  If I reported back that I felt a type of way about one of the specialists, she would find another.

 She stayed true to this right up until she retired, which happened to be the same time I was moving away.

Autoimmune Disease

I’ve seen a lot of different types of specialists, some were a fit and some were not.  When trying to find a rheumatologist, many would examine me and then agree that I have arthritis.  At this point I’m in my twenties; you would think they would want to investigate why someone so young was developing arthritis. 

In late 2011, I finally found a rheumatologist that was keen to solve a puzzle.  He brainstormed tons of ideas of what could be causing all of my symptoms and issues. He asked me lots of detailed questions, and really listened to my answers.  I remember when he asked if I could chew and swallow a cracker without a drink.  I laughed out loud and said no, who can do that?  Apparently, people actually can eat a cracker without a drink, who knew!? He sent me for lots of different tests and imaging. 

At the beginning of 2012 I was diagnosed with Primary Sjogren’s Syndrome and was told that I am immunocompromised.  I began a treatment protocol and have only had 3 very small erythema nodosum episodes since (10 years and counting!).

I’m Not Crazy!

If you’ve ever been struggling for years to figure out what’s wrong, then you know how big of a deal a diagnosis is!  You can finally find things to read, and different ways to educate yourself. You can implement changes that are recommended, but most of all, you know you’re not crazy, and you gain a little hope!  I seem to go through this mental process with each new diagnosis. Navigating new doctors, conditions, living in a more remote location, with less medical access, it is a constant challenge.

Gynecological and Urological Conditions

Since 2014, I’ve been struggling with chronic gynecological (Bartholin gland cysts and masses, squamous cell carcinoma in situ/VIN3) issues. Now more recently, also urological (urethral diverticulum) issues. These issues have resulted in 9 surgeries from 2014-2021 (7 years), with the two most recent on December 24, 2021.  For more info on this, check out my other blog post here.  I have also struggled with unknown infertility for the last four years.  If you’ve ever experienced this, I feel you and you are not alone!

Spasmodic Torticollis/ Cervical Dystonia

In 2016, I started to develop severe neck problems. My muscles would completely seize or “lock” my neck into a permanent spasm in a twisted painful position.  I had recently moved from Ontario to British Columbia and didn’t have a medical team familiar with my complicated history.  Luckily, I have found an incredible family doctor, and have found some great specialists willing to try to help.  Unfortunately, I do have to travel pretty far sometimes for appointments, but at least there are doctors to help me.

After multiple doctor appointments about my neck, in 2019, I finally drove to my rheumatologist during a flare to show her how abnormal it was.  She agreed and was concerned, and ordered some imaging.  After getting some scary imaging results, I was referred to an MS (Multiple Sclerosis) clinic.  MS was not the diagnosis, thankfully. I was diagnosed with Spasmodic Torticollis (Cervical Dystonia).  This was the most likely cause of my severe migraines, along with all of my neck problems.

Moving Forward

I am currently nearing the end of my recovery from my most recent surgeries. I just went for my latest round of injections for my neck and migraines (which I do every 3 months).  It’s exciting to restart trying to conceive post-surgery and I will try to remain as hopeful as possible.  I am slowly transitioning back to work, and am busy launching my new businesses (blog, printables shop, Virtual Assistant services).

My story hopefully can resonate with someone going through something similar, or struggling to be heard while struggling with chronic illness.

My goal is to help provide tips and tricks for a healthier life. I want to help give you pertinent information on the latest health and wellness trends.

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Comment below to let me know what you would like to read more about or which part resonates with you.

Aimée xo

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