Clouds

Here’s a word cloud that I made of my illnesses. I’m thankful that I have been cancer-free since July 2015! I do have a pesky fibroadenoma that causes me pain, but as long as it remains benign, I’m fine with it. Because I HAVE METAL IN MY BOOB! Yes-I have a metal tracking clip in my left breast to track the fibroadenoma. I also have metal in my left foot, but that’s another story.But I’m not just my illnesses. There are other clouds in my life. Like these! I love my Tokidoki-inspired tattoos. All of the tattoos on my back were done by the talented Bill Byers.

Bill and I have been friends since the early 2000s. We met when he worked at Newbury Comics in Boston and I was a label representative for Warner/Elektra/Atlantic. Bill’s a super guy and you can currently find him working at Ghost in the Machine in Brighton, MA. Next to me is my friend, Rie. I met her through my wonderful friend Kathleen.

I used to do a lot of stuff. I mean, a lot a lot. When I worked in the music industry, there was one night that I saw three separate concerts (three different venues) on one evening. My 2015 diagnosis of Ehlers-Danlos Syndrome changed all of that. Granted, I left the music biz in 2004, so my lifestyle had changed a wee bit before then.

I loved to travel. London is my favorite city. I’d walk all over the place with my hetero lifemate Sarah Jane. But now, Sarah is pretty much the only friend I see. And when I do see her, she is the best advocate that a crippled girl like me could have. I’m so lucky that she’s in my life.

And of course, there’s my man. My straight edge boyfriend, Jon. He is like some sort of medical assistant robot with the best personal interface. He’s taken me to the emergency room numerous times. He takes care of me so selflessly. Plus, he has the cutest dimples.

I’ve got a great deal going on physically and mentally. I can no longer work full-time. I loved my job at Bentley University, but I just couldn’t do it anymore. I’m thankful for the bright, friendly, and welcoming staff of the Lawrence Library in Pepperell, MA. My part-time job there makes me feel like I’m a valued member of society.

The sad bit is that working part-time, all of my medical appointments, and all of my ailments leave me no time for anything else. I sleep pretty much all of the time. I have to push my body to the limit almost every week, just to keep up with my job responsibilities. But I do like I always have; work as hard as I can … until my body doesn’t work anymore.

Next week, I’m being admitted at Dartmouth-Hitchcock Medical Center’s Epilepsy Center to undergo video EEG monitoring. I’ll be in the hospital for 5-7 nights. They’re trying to figure out what’s causing my “spells.”

I’m stressed about it. What to bring. What it will be like. Will I bring too many books and not enough underwear? And of course, there’s the money. This hospital stay will bring me to my $5000 deductible. I love the American healthcare system.

Again, I’m very fortunate to have friends and family (most notably my mom) supporting me financially. Friends have donated almost $3000 through my Go Fund Me campaign Avocados for Amy.

But! Maybe my future will be brighter. My Social Security Disability Insurance appeal date is coming up. Perhaps there will be a ruling in my favor and then I won’t have to worry about high health care costs.

If the ruling is not in my favor, I will be looking for friends to help me emigrate to Canada or Denmark. I’d say the UK, but that Brexit thing looks dicey.