Posts Tagged "immune system"

Dermatowhat?? (on living with DM) Pt.12

Posted by Aoede Muse on Dec 19, 2011 in Musings | 0 comments

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. 4

Posted by Aoede Muse on Mar 30, 2011 in Musings, News | 0 comments

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.

Dermatowhat?? (on living with DM)

Posted by Aoede Muse on Feb 22, 2011 in Musings | 0 comments

Dermatowhat? That’s pretty much the exact response I get when someone asks me about my health issues, and I tell them I have Dermatomyositis (DM). I don’t expect anyone to know what it is because it is a pretty rare disease. When I was first diagnosed in April 2008 by a dermatologist, he took one look at my hands (see below!) and immediately referred me to a rheumatologist. My only impressions of rheumatologists up until then were based on visions in my head of old people with chronic joint pain and arthritis. I was 35 then. Were my impressions that far off? And could I ever have guessed that nearly 3 years later, I’d be mostly housebound, except for visits to my rheumatologist, walking with assistance from a cane??

So lets go back to the beginning…what happened in 2008?

Well, like most of us, lots of life stuff was happening in 2008, personally and professionally. There was my day job as Environmental Scientist and a certain huge and high profile workshop I was helping to plan in April; my other full time job as singer/songwriter, performer and recording artist; and then there was planning for my May wedding (I was marrying Dave, my bass player), combined cd release and wedding reception; and the June-July Northwest tour with Santa Cruz-based singer/songwriter Rob Owen, to promote Aoede’s newest CD Push and Pull, which would be released in May 2008. It wasn’t that unusual for me to have so many balls in the air, but it kept me on go-go-go mode like an energizer bunny rabbit until I finally just ran out of go juice…

Ironically, it was before all of these events, just before the big workshop and just a few weeks before the wedding, that I noticed I had a rash on both hands-really red nail beds, knuckles and cuticles that were really painful to the touch. I recall simple things like reaching in to pull things out of my backpack or washing dishes causing pain; heat seemed to aggravate it. I’d spend most nights with “hot hand” and at times itchy. But it was livable. Mostly I was just self conscious and hid my hands a lot.

I was also working on some new Aoede merch in April 2008-handmade pop rock boxes-so I surmised maybe something I was working with-stickers or paint perhaps-irritated my skin. So when my hands started showing a really red rash, I went to the dermatologist thinking he would prescribe a cortizone cream for what was probably contact dermatitis-or eczema or something I’ve had in the past and could easily cure… Or maybe it was just all the stress of the myriad upcoming activities in my life, I had hoped??