Posts Tagged "rash"

Dermatowhat?? (on living with DM) Pt. 5

Posted by Aoede Muse on Apr 23, 2011 in Musings, News | 6 comments

3 YEARS Ago almost to the day (and then back to our story…)

You can do anything you set your mind and heart to…

Today is Earth Day, and I feel quite small. I set out to continue on where we left off, right after my first IVIG infusion in January 2010. But then it hit me: 3 years ago almost to the day, April 25, 2008, I was at the Dermatologist’s office being diagnosed for the very first time (and by the first doctor!) with some strange and rare disease: Dermatomyositis, which I’ve come to know affectionately and intimately now as DM. I already detailed in Dermatowhat? Part 1 the events that led up to the DM and all the craziness I called life that was going on around and despite it. So today, as I am writing, I am taking a few minutes to reflect on 3 years of life with a chronic disease. “Did I ever think 3 years ago I’d be here doing what I’m doing now?” I ask myself, as you probably wonder out loud sometimes too. On the surface, I really couldn’t have imagined ever being limited in doing anything to which I ever set my mind and heart. That’s just me. I have always just dreamed, believed and gone for it-whatever it was at the moment. Instilled and encouraged in countless ways by my parents I’m sure, and forever grateful for it. Of course… when you are young or young at heart and have your health, you CAN do anything. Or at least you think you can so there really isn’t much difference.

Sometimes “it” would manifest very differently than what I originally envisioned, like the first and only time I attempted hang gliding when I was 17 or 18, only to nose dive right off the cliff and scrape my foot because I was stupid enough to wear open-toed sandals. Or spending a 6 week Israel Summer Institute trip after my Senior year in high school, primarily focused on doing an archeological dig, only to be one of two in our group who got dehydrated while riding a camel in the Negev (the desert) and had to receive IVs from an Army base while

Modigliani

the whole bus waited… Or that time I took a painting art class in college without having had any prior drawing classes, and was asked to paint a model who was sitting on a chair, which was sitting on a platform. My chair if you could call it that-more like a wounded four-legged creature-looked like it was trying to walk off the platform. Two of its broken legs were even dangling off the platform, along with my models legs. My model was flat, had no form, and her neck and body were so elongated my art teacher said-hey you should check out Modigliani. I know it was meant as encouragement, but I realized I had no aptitude for perspective and spatial relations, and without training, I wasn’t going to go far as an “artiste.”

But then I also dreamed up this whole musical adventure-getting my start as a lead singer in a cover band for a band workshop called BandWorks in 2002 after a divorce. One of those “I’m free, I’ll find and reinvent myself” moments I’m sure. Did I know much about technical aspects of singing? Had I played guitar? Did I write songs? I hadn’t sang in public since my high school musical Grease. I hadn’t touched a guitar. I had played violin in 4^th grade and sax in 5^th or 6^th grade, but neither of those stuck. I sang as a kid and throughout high school-but never the coveted lead roles-like Rizzo. I was one of three special Raining on Prom Night girls our director dreamed up for that rendition of Grease. I wrote poems and snippets of lyrics and journal entries for years… but songs? So I went after the training: vocal lessons, guitar lessons, eventually song writing classes. My first attempts at all probably were feeble to say the least. There’s always so much to learn with new instruments. There was homework. There was practice. I never doubted that I could do it. I never questioned whether to put my expression out there into the world. I just threw it out there into the universe. Our band even started playing some of my originals-and I didn’t even know what I was doing yet. I was just starting to discover I even had a muse.

Dermatowhat?? (on living with DM) Pt. 2

Posted by Aoede Muse on Feb 27, 2011 in Musings | 10 comments

One Environmental Scientist + Bio-Energetics = Skepticism

When last we left off, I was just about to dive in head first to the world of natural and alternative therapies in December 2008… I had convinced myself that I could heal myself without taking more toxic drugs. I had already adopted a better, low inflammation diet, and even tried a few sessions of acupuncture and personal massage. My purple skin rash; however, was more active than ever and had spread to my arms, chest, elbows, legs and feet, and I was getting weaker. I of course, being as stubborn as I I am, downplayed pain and weakness to myself and my loved ones and kept throwing myself at life. While getting massage, I couldn’t even hold my arms up on the table and everything was so tender to the touch the therapist had to be extra gentle because I would wince. I even remember one therapist slipping me a card with the name of a Chinese medicine doctor on it who allegedly could help me, because the therapist could feel my weakness. I was wiped out even from massage! So when I learned about Immune Matrix from a family friend and doctor, I thought why not give this a shot. They focused on a whole systems approach; not on treating symptoms or immune suppression.

My first evaluation consisted of a clinician drawing some of my blood from my fingertip, hooking me up to a computer and exposing me and my blood to all sorts of vials containing what I understood to be the energetic signals for antigens in a liquid-anything from systems and organs, amino acids, sugars, molds, viruses-to the whole spectrum of foods. In essence, I became part of a circuit, as one hand held a wet wand and touched vials while the other was being tapped with another wand on what I presumed to be an acupressure point, to determine how my body would react to each antigen. I recall feeling a little jittery as I was exposed to more and more vials, but no long term side effects. My mom and Dave, my husband, were with me for support. (They actually tested Dave to see whether I was reacting to him! Thankfully, no!) I also remember getting three overall scores that corresponded to my level of toxicity (very toxic), my drainage-meaning my ability for my body to rid wastes and other toxins (very limited ability), and my ability to absorb nutrients (also very low ability). I also received a full report detailing each of the findings that the super computer spit out, such as a whole list of foods to avoid, or which systems and organs were affected, or to which internal pathways or processes my body “reacted and required treatment.” I was given homeopathic liver drainage formula to detox, other homeopathic remedies and supplements; told to do a strict anti-elimination diet, and to return for “treatments” over the next few months.

As a scientist needing to understand how and why things work, I couldn’t wrap my head around energetic signals of substances let alone the allergy elimination treatments. I remember going in for “treatments,” which again consisted of a clinician hooking me up to the computer and asking me to touch a bunch of vials in a panel (e.g., Bacteria or Wheat panel) to see if I reacted energetically to those substances. Those I reacted to (a lot of them it always seemed) were all placed jumbled together in a glass vase or jar. After the clinician manipulated a bunch of stuff on the computer to boost good processes and pathways and create a personal remedy, and determined that my brain could handle the treatment, she sent me to a room. The clinician would then ask me to do a series of different breathing techniques and tap my spine with the remedy vial to “reset” my nervous and immune system’s response (so they didn’t react anymore to these particular antigens). Lastly, I would lay down and hold the vase with all its contents for about 15 minutes…it all felt like voodoo. How could this possibly work?

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??