Welcome to Chronic Love Club!

What is CLC?

 

Chronic Love Club is a project dedicated to those with chronic illnesses. Our goal is to create an open community where we can inspire, share and connect with like-minded souls. We believe that by showing love and kindness towards one another, we can get through anything that chronic illness throws at us!

 

How did CLC come about?

 

After meeting Michelle through a mutual ig’er in 2015, our friendship quickly became a refuge for one another during the many ups and downs that come with an undiagnosed illness. It was through these difficult, yet extremely supportive times that we decided to create #ChronicLoveClub for others looking to forge similar, life-long connections.

 

Why the Lotus?

 

We chose the lotus because of its natural beauty and symbolism - both figuratively and literally. In many cultures, the lotus is seen as a metaphor for life due to its nature of blooming above mud and murky waters. For us, the lotus represents the ongoing determination and perseverance that patients like us acquire during our long and tedious journey of a chronic illness.

 

You're on this mission with us; let’s see the amazing places it can take us!

 

Here's to new friends and new beginnings!

 

Michelle & Derek 

If you'd like to submit a blog post and have your website promoted by us, click here for the details! 

Meet the Founders

Michelle

Hi all! I'm Michelle, one half of this club. I have a sidekick cat named Big, I love Survivor, and Disney songs make me happy. But that’s not what brought me here... When I was 12 years old I was diagnosed with Type 1 Diabetes. No, this isn’t something you get from eating too much cake, it is an autoimmune disease where the body mistakenly attacks the insulin producing cells in the pancreas. You kind of need insulin to live. And when I say kind of, I mean you will die without insulin.

Little did I know that years later, I’d be hit with some other some more life changing diagnoses. It all started with extreme fatigue and spiraled down from there. I began having strange neurological episodes, developed a tremor, began having trouble walking, and was told I had ataxia. My lifelong digestive issues became debilitating, I kept going into urinary retention, and my heartrate and blood pressure became unstable. Yet no doctor could tell me why any of this was happening.

After 5 years of searching for answers, some things have been figured out, through tests and procedures; I'm now being treated for a rare neuromuscular disease called Stiff Person Syndrome. I’ve also been diagnosed with POTS, Neurogenic bladder, Intestinal Dysmotility, and Endometriosis.

Ending the stigma surrounding mental illness will always remain an important cause for me, as I live with a mood disorder.

I dream of many things. I’d love to learn to be a radiology technician. Working on the set of a show like Survivor would also be so cool. And one day I’ll get to these things. But for now, I’m learning how to take things one day at a time, and how to be okay with my life going a lot slower than I had imagined.

The only way I’ve gotten through this, is through the friendships I’ve made, and the other chronic illness fighters I’ve met along the way. People who taught me how to be resilient, inspired me to take scary steps, and people who loved me through it all without judgement. And I’ve learned that a lot of us would not be able to do this without one another. I’m hoping in this community we can learn to lean on each other when times get tough, and cheer each other on in good times and bad.

You can find me on Instagram @ehmichelle

Derek

 

 

 

 

 

 

 

 

 

 

Welcome to CLC! I’m the other half of this venture! Where do I start? Well, my health journey began a looooong time ago (not in galaxy far, far away) while I was attending the University of Guelph for a degree in criminology. The first few symptoms to appear were nothing more than annoying muscle cramps and spasms during the many hours I dedicated to my favourite sport - volleyball. These complaints eventually progressed to debilitating gastrointestinal, dermatological, neurological, and psychiatric symptoms that kept me away from exercise, sports and my dreams of becoming a police officer. I scoured the literature for natural therapies and shelled out a lot of money for naturopaths, homeopaths, and every other avenue of natural health. Conventional medicine was failing me and so was alternative medicine. I became severely depressed, angry, anxious, lost and completely broken.

 

Eventually, after consulting 18 local specialists and visiting Johns Hopkins Hospital in Baltimore, a neurologist from McMaster’s Neuromuscular Clinic in Canada cracked the case with an antibody test through Mayo Clinic. My intuitions were validated as I was diagnosed with a rare muscle disorder called Isaac’s Syndrome, or immune-mediated neuromytonia.

Although most of my symptoms were explained by the neuromuscular diagnosis, I decided to pursue more investigations for a mysterious set of recurring symptoms that only appear after physical activity. Finally, after consulting another 10 specialists between 2015 and 2017, my immunologist has decided to treat me for an autoinflammatory disorder (Interleukin-1 mediated disease) after genetic testing at SickKids revealed a variant in the TNFRSF1A gene. We've decided to give a drug called Anakinra a shot - literally. 


It took me a long time to adapt to my situation. I learned that when your back is up against the wall, and there is nowhere to run, you learn to work with what you have, even if all you have is patience. Some goals and dreams will come quickly and others may require a tremendous amount of persistence. Keep moving forward, no matter what. “The race is long, and in the end, it’s only with yourself.”

It is through these life experiences that I’ve been able to draw strength, wisdom and a desire to help others. My mission is to bring my own experiences and daily wisdom to the world – one post at a time! 💛 #ChronicLoveClub

 

 

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