Posts Tagged "dermatomyositis"
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…
Did You Know? Today’s Rare Disease Day!
I just learned today is Rare Disease Day, and since I share a rare disease, Dermatomyositis, I thought I’d post some quick facts about the Day: The goal is to draw attention to rare diseases as an important public health issue that can’t be ignored! In 2011, over 60 countries participated! Read below and click links to learn more 
Dermatowhat?? (on living with DM…) Pt. 14
Be Careful What You Wish For… It Just Might Come True!
“So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable!” Christopher Reeve
“Oh My God! Oh My God!” These were my exact words when I was walking onto the stage at the Key Club in Hollywood 10 days ago to accept not one but TWO Awards for AOEDE at the Artists in Music awards: BEST Folk-Acoustic Artist and ALBUM of the Year! To say I was thrilled, honored, blown away, incredulous, tickled, beyond appreciative would be an understatement. Winning the Best Folk-Acoustic Artist was reward enough for the evening; winning Album of the Year on top of that just floored me…
For those of you who have followed my journey over the past year, you may recognize that I am not the cookie-cutter mold of singer-songwriter out there. For one, I haven’t been able to perform live or tour for some time due to the DM, and thus I connect much more through engaging on online social networks and focus on writing and recording material from home. To be bestowed with these honors, with this recognition, is beyond amazing to me. It signifies that the music is what’s most important. It also tells me YOU are the primary reason for these awards. I couldn’t have had the overwhelming support and encouragement, the feedback, the love and drive to create or to put it out into the universe without YOU. I’ve said it before, it’s really not DIY but DIT (Do It Together): from my producer and mixing engineer taking song babies and making them shine, the crazy talented musicians who played on the album, my exceptional pr and marketing team, to my incredibly supportive husband and family, to all the people who supported the nominations, share Aoede videos and songs, play with me on facebook and twitter, and helped fund the release of the next album. It is so special to be able to know this is my path, my joy, my lifeline, and to share it with you. Sharing your stories with me and seeing you cheer me on from the sidelines with each new small success really turns this muse’s dreams into realities.
It was one incredibly special and magical evening to be acknowledged for all the blood, sweat and tears, and for this journey and special music: Affair with the Muse.
And the day after I returned from such a high? I had my first Rituxan infusion.
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!
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