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This hasn't been an easy road to travel the past 14 years. There's been a lot of moments I've wished I could get back, a lot that failed to go as planned. I've faced a lot of disappointments and seen a lot in my life change. I've learned that I'm not alone. I've found community and people who can
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I tire of my body. I tire of my pain. I tire of the whirlwind scraping the walls of my skull. I tire of the weeping willow cracking and sprouting within thine eyes. I tire of courage. I tire of strength. I tire of personal earthquakes that make morning coffee a joke! I tire of cramping: calf, thigh,
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Lauren Bacall once said “I'm not a sedentary person. I've always been active.” I stumbled upon this quote when tinkering online while my kids played and was something I could relate to back in the day. I say that with a wistful look as I can no longer say I’m that active person. For me I have
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Benlysta is the first new drug approved for Lupus in 50 years. It's not for everyone with Lupus, but for those who can benefit, that's awesome! Now, I know some are thinking, I don't have Lupus, why should I care about Benlysta? You don't have Lupus - why are you writing an article about Benlysta. W
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From day one, I have been a perfectionist. I know that when I was in preschool, the teacher told my parents that if I could not cut with those rounded tip scissors on the exact line, then I just wouldn’t do it. And that was only the beginning of my quest for perfection. But that’s a pretty diffi
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Most of us have them and some of us even forget where they are due to the lovely fog that comes with Fibromyalgia and other conditions! I currently have five different locations that I stash emergency Spoonie supplies. 1. My nightstand is the primary place where I keep all of my medicines. I norm
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We interrupt your regularly scheduled program to bring you this Spoonie Meltdown. Last week started like any other week. Well, that might be overstating it. I had been on vacation. I came back Monday to an already overfull work week and hundreds of emails to respond to from the days out. I also had
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Every month has awareness about something, sometimes several things. April is no exception. April is the awareness month for Autism, Child Abuse, STD’s, IBS, Parkinson’s, Rosacea, and the list goes on and on. I am going to talk about one that is not often heard of, Sjögren’s Syndrome. Accordi
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April is Primary Immunodeficiency Awareness Month. Primary Immune Deficiency Diseases (PIDDs) are a group of relatively rare conditions caused by intrinsic or genetic defects in the immune system. The most famous case is “The Boy in the Bubble” story. In the US, there are an estimated 250,000
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As a Lupus patient, the Jewish holiday of Passover (which this year starts on the night of April 18) is one that resonates with me. It is the holiday that retells the biblical story of Exodus where the Jewish slaves overthrew the Egyptian pharaoh. Moses led the Jews on a journey through the desert t
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Please take the time to read Christine Miserandino's personal story and analogy of what it is like to live with sickness...
Sometimes you just gotta have a sense of humor! The top ten worst suggestions commonly given to someone with a chronic...
I have an invisible illness. To look at me you would see a short, fat, middle-aged grandmother. Sometimes I walk with a...
Before I even get started with this article, let me state for the record, that for those who have been approved for shor...
Pay no attention to the girl behind the smile... It has been said by many people that I am a very good actress. "But ...
