With Rare Disease, You Must Be Your Own Advocate
Hearing the words “you have a rare disease” is not something you ever expect. Nor is it anything you could ever really prepare for. But unfortunately, it does happen — and it may have…
Positively MG – Megan Hunter
Megan Hunter is a Myasthenia Gravis Warrior, wife, friend, and fur-mum. She loves to read, crochet, sleep and find the good in every day. Megan always tries to find the silver lining!
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We Have More Similarities Than Differences
As a part of the rare disease community, I interact with many people who have unique differences to what society deems “normal.” They may have ports or permcaths, feeding tubes or…
Essential Items I Pack for a Night Out
Last weekend, I was lucky enough to attend an Ed Sheeran concert. Passenger opened for him, and I danced the night away, smiling so much that my cheeks got sore. I have been to…
Chewing My Way Through the Tough Times
When I was first diagnosed with myasthenia gravis, I already was headed for a crisis. I had been battling symptoms for a couple of months, yet all of the doctors told me they…
I’m Incredibly Thankful for My Support System
When I received my rare chronic illness diagnosis, I felt like I was all alone in the world and nobody truly understood what I was going through. My friends and family felt sorry for…
Bullet Journaling and Chronic Illness Go Hand in Hand
I have been housebound since my stem cell transplant and was starting to get rather crabby about the whole situation. I am used to independence — visiting friends and going to…
My Favorite Film Teaches Me to Choose Kindness
Last weekend, I watched the movie “Wonder” again — for probably about the fifth time. The first day it was released in South Africa, I sat in the cinema crying my eyes out.
‘Tired’ Is an Understatement for People with Chronic Illness
When someone with a chronic illness says they are tired, they don’t simply mean, “Oh, I could probably do with a nap.” They mean that their body is beyond exhausted, that they can’t keep…
Chemotherapy Is Not Just for Cancer
“I’m going in for chemotherapy.” That was my response when people inquired about my treatment plan. “But you don’t have cancer.” That was the reply I got from most of them. “So it can’t…
I Discovered the Magic of Having a Port
Last year, I had a port fitted. This is a small medical device placed under the skin just under the collarbone. It allows for drips to be set up without nurses having to…
‘Healthy’ Doesn’t Necessarily Mean ‘Normal’
For the past two years, pipes have been sticking out of my chest. I have had a port beneath the skin just under my collarbone. Many treatments have caused me to catch numerous infections floating…
Catching Up as Stem Cell Transplant Becomes a Reality
It has been a while since I have written a column. So much has been happening, but at long last, I am able to sit back on the couch and not immediately pass out…
