Every symptom I list is met with new medicine. If I’m lucky, one is prescribed but usually there are a few suggested, since despite being created in a lab, treatment with medicine is not an exact science. And of course, there are more medication to treat the side effects of the original medications. Thomas Edison …
My son is used to going to the beach during sunset. It makes me sad that he has yet to enjoy a day on the beach with me but my lupus makes such sun exposure highly risky. It is true, lupus is a family disease! I am one of two-third of the people with …
My son is used to going to the beach during sunset. It makes me sad that he has yet to enjoy a day on the beach with me but my lupus makes such sun exposure highly risky. It is true, lupus is a family disease! I am one of two-third of the people with …
Living with chronic illnesses means that my body is always in flux. With the condition of my body never being constant, I am not on stable ground. I always feel like I am walking on a tightrope, on a line that stretches long before me, with no end in sight. Walking on this tightrope, …
We all have our idiosyncrasies, and over time, we have found ways around it to make us appear more “normal” to others. When you have a chronic illness (or two), you start to collect a number of mannerisms that might seem idiosyncratic to others. These “odd” behaviors, however, are really coping mechanisms to help us …
No one wants to be a “survivor”. After all, being a survivor means you have experienced something that really should have killed you, but didn’t. One can be a survivor of an illness (e.g., cancer survivor), an event (e.g., survivor of building fire), a crime (e.g., survivor of an armed robbery), a massacre (e.g., …
I don’t claim to be living well with my chronic illnesses. In fact, I always seem two steps behind getting a handle on my disease activity. I do, however, try to live a life, the best I can, despite my chronic illnesses. After all, my illnesses will be with me my entire life, and I …
So my evening project was to break down this whole watermelon. It’s a project because I haven’t tackled such an activity since I got sick. It seems like such a simple thing but to me, it was a big undertaking. First, there is the fatigue. I have been thinking about cutting this watermelon for about …
When I was a little girl, my birthday wishes were very unrealistic. Think unicorns, time travel, x-ray vision, and such. As I grew up, it became more realistic and wishes became more like goals. Yet, as I face turning 38 tomorrow, I find myself dreaming once again. I wish that I will wake up and …
Story 1: Sharing coffee with a fellow chronically ill friend, I said that I look forward to growing old in the city. I can imagine spending the days catching a matinee show at Lincoln Center with my husband, like those old couples I see walking around. To which my friend responded how optimistic I am. …
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