Posts Tagged "DM"
Dermatowhat?? (on living with DM) Pt. 16
Who Has Time to Be Sick?
“There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.” Henry David Thoreau
Last week, I completed and released a new video, Fairy Tale Love. I had three phone/skype interviews surrounding the release of the new album. I dealt with icky website problems. I made a new splash page for the website. This week, I packed up and mailed 50 CDs and rewards packages for my Kickstarter Angels as I refer to them. (Dave, my other angel, graciously went to the post office and filled out all that paperwork to mail each one-especially overseas customs forms!) I released a new album on Tuesday. I updated my website to reflect all the changes. I started planning for an event to release the album. I just finished and sent out my monthly museletter. Next week, I will be going to LA for an awards show as Aoede was nominated in 3 Folk categories… Who has time to be sick?
Dermatowhat?? (on living with DM) Pt. 15
10 Things I’ve Learned From Watching Grandma
“I am not what happened to me, I am what I choose to become.” C.G. Jung
Dave and I just returned from Arizona where were were privileged to celebrate my Grandma’s 95th birthday with her on St. Patrick’s Day! It got me thinking not only about all the changes Grandma has seen in her 95 years of life, her many life lessons and experiences, but also about what she has taught me just by example even during the week I was with her. Maybe because of her, I look at life and ask what can I learn or what can I teach? Perhaps she thrives at 95 not only because she is loved, needed, included, but because she still has more to learn and to teach…
Dermatowhat?? (on living with DM) Pt. 13
“Once you make a decision, the universe conspires to make it happen.” Ralph Waldo Emerson
January 2012. The year of the Dragon-driven, ambitious, self-assured, scrutinizing, brave… I am a Water Rat born in 1972, apparently “Smart, Magnetic, Well-liked, Affable, Quick-witted, Surreptitious, Selfish, Protective, Calculating, Obliging, Generous, Compassionate, and Possessing Strong Intellectual Powers and Great Insight, as well as being a Great Puzzle Solver…” Or at least that’s what the sign says. Like many of us and with most things in life, I take what resonates most to me (usually the most positive)! Horoscopes and zodiac signs have never had a huge impact on me, but sometimes it is fun to recognize some trait or pattern or experience and just relate to it.
This New Year definitely signifies new hope and continued improvement to me. Last year at this time, just over 3 months out of the hospital, I was going through monthly IVIG infusions and still very weak and recovering, using a walker and then cane at home. To focus on what really brought me joy and get my head out of sick mode, I also shot a music video and was working with pr folks re-designing my website and prepping for release of my 7 song digital EP: Affair with the Muse! One year later, I am now prepping for the release of my full length album and walking unassisted at home. Interestingly enough, I am still working on completing the music video I started a year ago…
Dermatowhat?? (on living with DM) Pt.12
Between a rock and a harder rock…
Are you familiar with the saying in the picture? The one with two equally hard alternatives? So today I am managing to keep the DM and inflammation suppressed with only prednisone, but my rheumatologist insists that this is not a safe and viable long term strategy, especially given that I already have been gifted some osteoporosis courtesy of the lovely prednisone (the gift that keeps giving). And I keep having these mini-flares each time I try to taper the prednisone, even just a few milligrams. So I feel like a 
ticking time bomb, and here we go again, once more to explore the next treatment-the one that can kick this DM to the curb once a for all… but wait a minute… haven’t we been here before? And before that? And before that…. alas, let me back up and bring you up to date…
Since October 2010, it has been a roller coaster of immuno-suppressive treatment cocktails and therapy to regain strength I lost while in the hospital for 24 days in September 2010 due to an apparent “flare of my DM.” After my initial poor reaction to IVIG (intravenous immunoglobulin) in January 2010, we became friends for 5 days each month, as IVIG was my main treatment from September 2010 through February 2011. I would like to believe it helped with my strength and energy. So hard to really know since I was also on high dose prednisone and Cellcept at the same time! I was blessed each month to have family or friends take me to the infusion center and sit with me as this strange substance sourced from thousands of donors fused with proteins in my own blood. I imagined all the new antibodies having stories and lives of their own-being strong and eager, able and bursting with health and wellness-kicking all my sick antibodies to the curb! It took a lot out of my body each week, but I kept going, and when I was not feeling depleted, would focus on connecting with fans and friends online, and even managed to shoot a new music video at the end of January and digitally release an album in March 2011!
Dermatowhat?? (on living with DM) Pt. 11
Reflections on the passing of a beautiful muse
“Don’t cry because it’s over, smile because it happened!” Dr. Seuss
(In Memory of sweet muse Amberlin who was taken from this world much too early)
Just after returning home from a wonderful dinner and catch-up session with a friend on October 5th, I learned from Facebook that Steve Jobs had passed. I read with interest posts about his life, quotes from memorable speeches, and from the amount of people posting all over the web and social networks, could sense how much of an impact he and his life must have had on countless millions. I mourned his passing-the loss of a pioneer, a world innovator, and imagineer as I considered him-as I grieved for Amy Winehouse when I learned of her passing-sad, tragic in Amy’s case, but very removed. As I flipped around Facebook into my personal profile posts, I read something on a high school friend’s post about a personal and childhood friend of mine that caused me to read more-something along the lines of “how do I live without my best friend? I miss you already.”
First impression was that my friend Amberlin had moved, and must have moved far away from her best friend Amber, who I was also in touch with on Facebook, but as I read more posts on Amber’s page, I came to the one that nearly stopped my heart: RIP Amberlin. Here I was mourning the passing of Steve Jobs-reposting his photo and a particular quote that struck me; someone I didn’t ever know-while my childhood friend had suddenly passed away at 39. I just wouldn’t accept it. I didn’t want to accept it. Amberlin was my muse and my light for the past few years as she had fought tirelessly, courageously for 15 years against what some consider an invisible disease-Chronic Fatigue Syndrome and ME. It wasn’t invisible to her. She lived daily with constant reminders. She was constantly posting on her blog and facebook information about CFS to educate others, to raise awareness to the cause-to make CFS less invisible. And when she wasn’t fighting her own disease, she turned to art. She painted; she made jewelry; she surrounded herself with things she loved such as chickens and nature. She was a light in her community and to all those she touched.
Some of Amberlin's Art on Etsy
Dermatowhat?? (on living with DM) Pt. 10
I just returned from The Myositis Association Conference, where I was privileged to tell my story and perform in Las Vegas, Nevada. What follows is an excerpt from my presentation: 10 Confessions and Secrets of a Singer-Songwriter Who Became a Muse.
And from the time I was back home from my 24-day hospital stay at the end of September one year ago, while physical and occupational therapists were coming to the house multiple times a week, while a home nurse came to assist me with my bathing needs, while family or friends shuttled me back and forth each month to the hospital for IVIG infusions for a week at a time, while I was learning a new baseline and a new norm that involved wheelchairs and walkers, ramps and commode seats and shower benches, I was trying to figure out how to get my music I had recorded in 2010 out into the world.
I didn’t know why. All I knew is I had to get my music out there and decided when the 6 new tracks were ready around August 2010 (pre-hospital) to check in with my distribution company to see how to make it happen
. Next thing I know, from November on there was a whirlwind of activity. In December, I found myself retaining and working with a pr firm on a new bio and press release, developing a new website, getting a photo shoot and new photos and finding and working with a digital collage artist on the new album cover, as well as taking up ukulele and recording a ukulele-based song that would be included on the new album. In late January 2011, I shot a music video for Fairy Tale Love-the first track from my new album. In February I released my new website and started my first blog Dermatowhat?? (on living with DM). I also began engaging with new fans on twitter, Facebook and other social networks and released my first music video. I released my new album Affair with the Muse digitally on iTunes in March 2011. And for the past 6 months, I’ve been recording more songs for an album, engaging fans, working on a music video, given radio interviews, won a music contest, and licensed songs. All except for parts of the music video shoot I’ve done from home-mostly from bed 
Yet when my publicity folks were fishing around for an angle, asking me what’s my story in December 2010 and again in January 2011, all I could offer up were my accolades: Women’s Radio’s Top Artist of the Year 2008, Recipient of a Top Album of the Decade for my 2008 album Push and Pull; my role and contribution to WomenROCK, which I helped co-found in 2006 to help women artists in SF Bay Area. And what about combining my passion for water and all things coastal with music? That would make a good story too wouldn’t it? I mentioned in passing I wasn’t really doing live shows due to some health issues. That I was in the hospital in September and at home recovering. That maybe in 2011 I might be able to perform again. “No performances? No tours? Where’s the story?” the publicity folks asked. It took my pr contact directly asking me about the hospitalization and my health in an interview in January 2011 to make me realize just what my story was. Here’s how he framed it: “So, you said you were in the hospital for 24 days right?” “Yeah.” “Wow. People who get heart bypasses are out in just a few days now. 24 days huh? And you are releasing an album, and retaining pr, releasing a video and shooting a new one? all while going back and forth for dr appts and infusions and physical therapy and occupational and ….”
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