Posts Tagged "myositis"
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. 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. 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 ….”
Dermatowhat?? (on living with DM) Pt. 9
“Life is 10% what happens to you, and 90% how you respond to it.”
Every day, I would awaken, think, say, and truly believe how blessed I was, and I’d do it with total love and gratitude!
I was transported to Kaiser Hospital Vallejo by ambulance and gurney on September 16th, 2010. Hopefully it is the first and last time I have to travel by ambulance, but at least I was awake and able to see out the back window and watch the world go by for the hour trip from South San Francisco. I recall enjoying being anywhere other than the hospital and especially crossing the familiar Bay bridges. I loved knowing I was near and going over the beautiful San Francisco Bay, even if I couldn’t see much of it because I was strapped to the gurney! I remember that day also being significant for two reasons: 1) my parents 43rd anniversary was on the 16th, and 2) a dear friend would be having a mastectomy that same day. Mom was with me in California. Dad was still with grandma at her rehabilitation center in Arizona!
When we arrived at Kaiser Hospital in Vallejo, a big building with multiple wings and a pretty remodeled lobby with a player piano (I later learned), the medics wheeled me around the new wings of the hospital trying to find the rehabilitation unit in the new building on the 4th floor until someone directed us to the old rehabilitation center on the 3rd floor. My floor was not new by any stretch of the imagination, but I was told this rehabilitation center was one of the best in the Nation.
kaiser vallejo taken from lis's bed with mom
Mom and Dave drove up separately and arrived around the same time. They helped unpack familiar things that made the room feel more homey: my clothes, my silly must-haves like chapstick, deodorant, moisturizer, brush, and my hairbands-the only thing that could make me feel somewhat presentable when others came to visit (especially considering no showers for 12 days!) They found a new home in my drawers along with the food items mom brought and other little gifts such as small sized pajamas to wear in bed if they permitted (at the other hospital I wore a hospital gown that barely tied in the back-what’s with those pointless garments anyways??) Mom knew I had lost weight and went shopping to find me smaller stretchy clothes to wear for my rehab days. I was sooo appreciative! I had a pile of my things like my computer and small dvd player and my backpack right next to me within reach on a chair. Everything had to be within reach as I was still so weak I couldn’t get up to get things yet!
Dermatowhat?? (on living with DM) Pt. 8
What Do You Do When the Rug is Suddenly Pulled Out From Under You?
I think it is telling in some way that I have actually put off writing about this “event” for as long as possible. I wonder if I believe that writing about what happened is somehow reliving it. Maybe part of me is not ready to again experience the fear, the loss of control, the dependency, the surrender, but perhaps that is just the part that needs to face what happened to get some closure and move on.
No one plans to spend 24 days in the hospital. When I woke up on Friday morning September 4, 2010, in my regular bed, I didn’t know I wouldn’t be sleeping in it that evening, let alone even be seeing our house again until late September.
“The part can never be well unless the whole is well.“ Plato
(I am recapping this paragraph from Dermatowhat?? Pt. 7 because I think it is important to note the events the day of.)
I remember sleeping more than usual. I remember not being able to swallow very well even without food. I remember making a vega shake and drinking it during the day. I remember feeling extra lethargic and thinking that a walk outside might just revive me; give me some needed energy. I remember taking a walk around the block, including a bit of a hill, around 6:15 pm. I remember coming home and reaching for my pills but deciding against it as I was unable to swallow. I remember feeling dry and reaching for water. I remember not being able to swallow for several seconds and then I remember my heart starting to beat fast as if it was kick starting my body, like when you get a rush of adrenaline.
Then I remember calling Dave.
I think I was sitting on the couch and when I went to speak to Dave, the words came out strange-somewhat slurred, perhaps because of 
my dryness. Mostly though words took a lot of effort. I realized I was speaking unnaturally-not connecting my words-very mechanical-like a robot. Dave was asking me questions like, “Do you know who you are?” I answered, “Yes, I am Lisa.” “Do you know where you are?” “Yes I am at home. I am on the couch.” “Do you know what day it is?” etc. I could respond but not connect thoughts. It wasn’t conversational. I could tell my speech was altered too but didn’t want to panic. Dave was at least 40 minutes away picking up a friend in Half Moon Bay, and I needed to stay as calm as I could until he returned home.
I remember walking around the house from room to room as if going through the motions grabbing my shoes, standing near the door, as if knowing I would need to leave to go somewhere but not exactly sure where or why.
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