Posts Tagged "immuno-suppressive"
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. 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.
Dermatowhat?? (on living with DM) Pt. 6
(Back to our story!)
“We… anticipate what’s to come, then ignore what’s actually here.” Stephan Rechtschaffen
After the trials and tribulations of my first IVIG treatment and my body slowly marching to its own drum, I knew the music had changed, and I had to find a new dance. Looking back at my online music journal for January-June 
2010, I have NO IDEA how I managed to juggle all this music, let alone life, with the rebellion my body was staging! I think honestly, I avoided and saw what I wanted to see. Not listening to my body’s whimpers and aches and pains-the Body who cried wolf so many times I couldn’t even tell when the wolf finally did appear later in the Grimm version of the fairy tale that was my life. There was just no way I would let this DM get the best of me. What a damn stubborn girl. Relate?
I had a call with a Music Strategy guru in late January 2010 that gave me an idea to reach out to environmental film makers and to create a small book of illustrated lyrics (perhaps asking a children’s class to assist) to accompany Blue Gold, the coastal anthem I had released in September 2009. Somehow, I got it in my head that just lyrics weren’t enough. There was so much more to tell about the ocean, water, about pollution, about plastics and toxics. I decided I wanted to write a children’s or teen’s water-themed book covering different water topics and also to write some water-themed pop music to accompany each of the topics.
At the same time, the muse was flowing and took the form of a few new pop songs and some new water-related 
songs for which I quickly recorded home demos. Little did I know, but I was getting ready to embark on a new album, having released my last one, Push and Pull, around May 2008, concurrent with my wedding!
I recall in February 2010 reaching out to a local Bay Area producer with my ideas both for an album and for the kids water-related pop songs project. I recall telling him my goal was film and tv placements like Gray’s Anatomy, and that I was seeking high caliber musicians and a producer to help realize my vision. Just after, I recall connecting with an LA Producer in March 2010 who expressed interest in working with me after hearing some of the new songs. He proposed working and recording three of my new pop songs with some amazing high caliber musicians at a few recording studios in LA. Might as well have given me heroin… one taste of recording and I was hooked. This planted the seeds for my LA recordings in the summer as well as for writing some brand new material for the project.
But would I be able to travel to LA? To get through such energy intense recording days over a weekend?
Dermatowhat?? (on living with DM) Pt. 4
Does a New Year = New Hope?
“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.” Mark Twain
By January 2010, I was pretty weak, still had a skin rash, and my rheumy expressed that she thought we’d gotten all we could out of the methotrexate. I like how she included herself in the treatment, as if to convey I’m not going at this alone… She suggested stopping the treatment and trying a different therapy: intravenous infusion of immunoglobulin (IVIG), a blood product containing IgG extracted from plasma, which had been shown to be effective for controlling some DM cases, especially those
that hadn’t responded well to other first-line medications like prednisone and methotrexate. It was to be administered over 5 days at the hospital infusion center, outpatient, over a few hours each day. I distinctly remember anxiety and fear going into that first week of treatment, and my family there as support. I also recall writing on facebook to my friends on the morning of the first day of infusion: I will embrace the day with love and gratitude and a positive attitude (or something like that).
The product that would be going directly into my veins was extracted from the blood of thousands of donors. How amazing that we had the technology to do that! How blessed and fortunate I felt to be on the receiving end of a product that costs thousands of $$ ($10,000 for a 100 kg (220 lbs) person at 2g/kg). Thank Gods I have health insurance through the State. Maybe this was just the treatment my body needed to give it new antibodies, boost the immunity (even though all the treatments so far had been designed to suppress my immunity!), kick this DM to the curb!
IVIG Game from Kids Korner
(By the way, this kids korner quiz to the right ROCKS to describe simply our immune system and cells like IgG-the game is fun too!)
Hospitals are not quiet, restful, private places, I learned quickly. The Kaiser South San Francisco Infusion Center was a bustling place. On Monday, Day 1, my nurse for the day led me to my chair, started an IV, checked my vitals, and mentally prepared me for what the procedure would be each day for 5 days. There were people all around me along the same wall sitting in their hospital chairs watching tv or sleeping or visiting while they were getting their infusions, with just a curtain for the illusion of privacy. Some wore hats. Maybe some of them like me just liked hats. Maybe others wanted to cover their bald or near-bald heads. Some seemed lost in themselves. Others smiled as I entered. A row of chairs, often occupied by loved ones, sat directly across from the patients in hospital chairs. There was a bulletin board with the usual notices, but something caught my eye that I later inquired about: several brightly colored hand-made felt hats, each one pinned onto the board.
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