I started coughing last week. Really coughing. The kind that hurts your ribs after a while, and wakes you up during the night. It’s the kind of cough that makes people move away from you in public as they whisper behind their hands. I had flown to another…
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When I see someone for the first time in a while, they sometimes ask me if I am better. I have to pause before answering. Being chronically ill means that this is a long-term condition and that I may never be “better.” A chronic condition is a disorder or disease that…
Lately, I have been pushing myself beyond my limits. While I’m aware of this, I don’t want to miss out on anything. We recently moved, confronted major life events, and have been crazy busy at work. I haven’t been prioritizing my health, and yesterday, it all came to a head. I…
When you live each day unsure if it will be your last. If you fear that the next time you walk outside and look up at the sky to feel the sun’s warmth on your face, it’s the final time you will do so unaided. Or if you don’t know…
This past weekend, I attended my doctor’s “special patient day,” a morning event with tea, snacks, and entertainment by local musician Joshua na die Reën. The staff from my doctor’s office was there, including the nurses who take care of me during day treatments and chemotherapy, administrative staff, and the women who assist…
Choosing your healthcare provider can be as important and daunting a challenge as finding your life partner. You need someone who will advocate for you and who has your best interests at heart. You need someone who is passionate about what they do and who wants to make a difference.
My husband and I have a cat and two dogs because I believe no home is complete without pets to love. Our animals sleep in our bed and come along on family trips — they are our “fur-children.” As my health has declined, I’ve come to see these pets as…
What do you do when told there is a treatment that could put you into remission, but your health insurance denies it because there “isn’t enough clinical evidence”? There will never be enough clinical evidence for my rare disease because there are not enough people affected by the condition to make…
This past week, I was lucky enough to attend the RareX 2018 Conference organized by Rare Diseases South Africa. It was a chance for healthcare professionals, support groups, and patients to meet up, interact, and attend really interesting lectures. I knew it would be a worthwhile event, but…
Before my diagnosis, I was perfectly healthy. Even childhood ailments like chicken pox or mumps didn’t inflict me. In fact, I had never even had the flu! I was an extremely active girl and am proud to say that I even had a six-pack from all of my competitive dancing. At…
This year I turned 30. For most of my friends, their 30th birthday meant they could have a big party and use it as an excuse to get together. For me, it was more of a celebration of life and the fact that I am alive. Over the past year,…
When you first get sick, it’s difficult to keep up with the number of cards, bouquets of flowers, and hospital visits you receive. Every day someone comes to visit you in the hospital, and you run out of space to display all of your gifts. However, as time goes on,…
At school, I wanted to belong to the “cool crowd.” I used to watch them from the outside and was so jealous of the way they seemed to glide around school, owning every little aspect of it. We all wanted to be in their little clique because they were the…
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