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What do you mean that is SUPPOSED to be there?

The body has QUITE the attitude on someone who has an auto-immune illness. It sees healthy cells and tissues as foreign invaders and takes it upon itself to attack. Nice, hey? With all guns blaring, these healthy tissues get destroyed and the crazy symptoms kick in. Cancer may be one of the biggest bullies in the playground but, autoimmune certainly has the jungle gym covered. And that’s exactly what it is – a bully!

According to the Rebecca MacDonald Centre for Arthritis and Autoimmune Disease at Mount Sinai Hospital in Toronto, approximately two million Canadians are affected by auto-immune illness. The spectrum can range anywhere from Crohn’s Disease to Rheumatoid Arthritis to Multiple Sclerosis to my buddy, Wegener’s Granulomatosis (now known as Granulomatosis with Polyangitis).

So, autoimmune is most certainly a multi-faceted, all-encompassing illness. It brings with it all kinds of bizarre symptoms and can affect everything from your saliva to your brain cells. While I don’t know much about other areas of auto-immune yet, I have become somewhat of an expert in my own illness.

Wegener’s Granulomatosis.

SUPER strange, friends.

Long story short, I was diagnosed in 2007 after a series of misdiagnoses of rheumatoid arthritis, sinusitis, pneumonia and pink eye. Not to be graphic but, there was a lot of blood involved and doctors were concerned that I was actually going to suffocate in it. Diagnosis Day came with a battery of tests and an overload of information. While I was happy that I had a diagnosis, I was getting words like ‘chemo’, ‘prednisone’ and ‘secondary-cancers’ thrown at me. Scary times.

Needless to say, I’m still here.

Docs started me on a daily regime of00mg of prednisone and some chemotherapy. It took several months before I finally started coming around, but, the medications kicked in. So, did the ugly medication side-effects (MASSIVE weight-gain (which I have since lost and then some), MOONFACE and sprinklings of blemishes). For someone who was the guest of honor at her own wedding in just two short months, this was beyond overwhelming. But, I got through it.

It is now eight years later and I could probably write a book on the trials and tribulations of having such a rare, life-threatening illness at the age at which you are discovering yourself and starting life. Now, when I visit my local ER with what I think is a flare-up, I rattle off the list of tests that need to be done and which Docs need to be called in for a consult. I don’t know if they find it helpful or annoying but, I have learned that you need to be an advocate for your own health so, if it HELPS ME, I’m going to do it.

Remember, I’m an enigma…wrapped in a puzzle.

My most recent (very scary) ER visit was a prime example. I stopped breathing, my heart rate shot up to the 180’s and my pulse was around 70/35. Initially they thought it was a cardiac episode…then, they were going to treat me for a gallbladder attack. Once I regained a few of my senses and let the Doctor know that unless my long-ago-removed gallbladder is attacking me from a jar of formaldehyde circa. 2001, it’s definitely not gallbladder – I was able to advise her of my condition and what generally happens next.

Once I was in the hands of the internal medicine team and after numerous tests of all kinds of shapes and colours, they determined I WAS having a major flare-up…BUT! This time, it was a little more exciting. It was actually a serious bug, within a flare. Cool! Out came the big-gun antibiotics and IV steroid and I was whisked off to my suite in 4SA. After a week at the HSC Resort, and a big ol’ medication bandaid I’m feeling a bit better.

Oh Weggie.


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