Friday, December 12, 2014

Living With Adult Onset Still's Disease

Blissemas is going on... don't forget to comment EVERY DAY on the new blog of the day to earn a chance to win a kindle paperwhite loaded with smut. Because seriously, that would be awesome! Today is Lily Harlem, who has some smokin' hot pictures of dudes and motorcycles on her blog...


And now for something a little less, but also more...

As you probably know, I have completed my first go round at the helm of an anthology. Being an editor was both more wonderful and more crazy making than I could have anticipated...

But I want to take a few minutes to talk about why I decided to take up the mantle of editor (something a few years ago I swore I would never, ever do...)

I have this friend; she's a writer and a librarian and a candle maker. (If you've gotten a Christmas present from me in the last few years, you've probably gotten one of her candles. They're amazing!) And I love her, so much. She's wonderful, beautiful, spiritual. Just a truly amazing woman. She has a terrible, debilitating disease. She mentioned it once, in passing, and I'd never heard of it. Still's disease. So, I did what I do... I looked it up.

Still's is pretty awful, and luckily, it's also extremely rare... as far as I'm concerned, it's not rare enough! I wanted to do something for my friend, and for everyone who has this disease.

So, Coming Together: Among the Stars was born. I love science fiction. In the world of Star Trek, this could be an easy fix... but we don't live there yet, and I'm hoping very much that the proceeds from Coming Together: Among the Stars, will help make that dream a reality...

Allow me to introduce my friend, who has a few words to say on her experiences...


Awareness for Adult Onset Still’s Disease is everything and greatly needed and that is why I have to thank Lynn Townsend. She is an amazing friend and I love and appreciate her dearly. She was one of the few people to read about Still’s and that meant everything to me. Thank you from the bottom of my heart.

I have lived with the Still’s dragon for over seven years now. It is an unforgiving disease that haunts those who have it. I can honestly say that I hate it and wish it would go away. It is hard to watch a body once very fit become so ravaged by a disease. The hardest part is seeing yourself through other people’s eyes. Still’s disease has taken so much of me away, I don’t even know who I am anymore. Despite everything, I try to stay positive and hopeful for remission.

Still’s disease is a rare inflammatory disease. It can attack any part of your body. It is very similar to Lupus and Rheumatoid Arthritis. Treatment consists of high dose steroids, the chemo medication Methotrexate, disease modifying drugs (DMARDS), anti-nausea pills, painkillers, muscle relaxers and I know a lot of us do an Ibuprofen rotation with the painkillers and I take Xanax to keep my heart rate down and keep anxiety and stress at bay.

Back in 2007, I became severely ill and none of the doctors I seen could give me a name for it. It took 2 years to be diagnosed and it had already done some pretty good damage to my body. It is so critical to get diagnosed quickly, but most physicians will never see a case of Adult Onset Still’s Disease and that brings hesitation to some physicians.

It is my living hell and to be honest, if I didn’t have the support I did from my family and friends, I might not be here today. When you are chronically ill, it is so important to have a support team to help you get through the bad days. I fell into a very dark hole of frustration and depression while I lived in “Limboland.” It is bad enough to be sick, but when you don’t have a name for it, it makes it worse mentally. So much worse. I know for me, I live with the stigma of “Well you don’t look sick.” Or even “Oh you just have arthritis? Well take these vitamins, it will make it go away.” I realize most people think it is a very treatable thing or not even a real disease, but I know for me it hurts my feelings. It is so very personal. Each of us who have Still’s do not always have the same symptoms, but we find common ground with how we are treated or approached.

The one thing every friend or family member should do is become educated with the disease. Go to the International Still’s Disease Foundation website; it has the most accurate and even some of our own stories there. Find out everything you can about it, be there for your loved one. Supporting them through the good and bad days is very much appreciated by us. Together we can make a difference…


So, please; Coming Together: Among the Stars is out in paperback, and you can pre-order your kindle copy. The ebook will be available on Monday... 278 pages of sizzling science fiction from some of the best writers in erotica, including Nobilis Reed, Elizabeth L. Brooks, Malin James, Rose Caraway, Kathleen Tudor, Annabeth Leong, and Jade Waters among many other extremely talented and creative voices.

ALL proceeds go to our charity and every bit of help can make a difference.

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