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??
So what is Dermatomyositis (DM)?
So, I think my case is a bit unusual compared to some: when the dermatologist saw me, he immediately diagnosed me with DM because of the telltale signs of the skin rash based on my hands. Some people go years without getting accurately diagnosed, especially when they present later in the course of their disease with different symptoms such as muscle pain or weakness that could also be symptomatic of other diseases!
Dermatomyositis is characterized by inflammation (itis) of the skin (derma) and muscles (myo). Myositis describes inflammation of muscle tissue. It is an autoimmune connective tissue disease where the immune system instead of just fighting infection or viruses and stopping keeps attacking healthy skin and muscles, wasting them. Underlying causes for DM are unknown, but may result from viral infection or autoimmune reaction, and it is a rare disease. I’ve seen statistics that show an incidence of DM estimated at 1-10 per million in the US in adults and 1-3.2 per million in children, and the incidence is apparently increasing. Apparently DM is twice as common in women as in men. The main symptoms include skin rash and symmetrical proximal muscle weakness (which basically means the muscles closest to and within the trunk of the body like the neck, hips, shoulders, legs progressively get weaker and waste). There is no cure, but remission is possible. Key medical treatments for DM, such as immune suppressing medicines (e.g., Prednisone, Methotrexate, Cellcept), are intended to slow the immune system and stop inflammatory attack on the muscle, skin and other body systems.
So then what happened?
Between April and June 2008, I saw a rheumatologist, got a series of blood tests, skin biopsy, was placed on meds to suppress the immune system (from attacking the skin), and continued to work, get married and prepare for the tour end of June into July. When we left in late June, driving through California and up through Oregon and Washington, we found it to be a hot summer in the Northwest, and as the tour went on, and I was in the sun more and more, I noticed the rash spreading to other parts of my body, and I was becoming more tired. Apparently, I was learning the hard way, heat and sun are triggers for DM and can exacerbate symptoms. I talked to my cousin, a naturopath in OR, who convinced me to alter my diet and do an Elimination diet, as he had seen it be effective in helping some of his DM patients. Gluten, for example can exacerbate skin problems and cause inflammation. So come July when I returned home, I stopped eating many foods that could cause inflammation, and I am still gluten, dairy and sugar free to this day.
Here are some photos documenting activities during May-July:
May 2008: wedding reception/cd release in San Francisco
June-early July 2008: Northwest Tour CA, OR, WA
Come September or October 2008, I noticed I was having some difficulties lifting my arms in the shower, brushing my hair, putting my backpack on, getting up from the couch, climbing stairs, and increasingly, I started having pretty severe upper body weakness. At first I thought it was psychosomatic-like I knew that some people with DM also had muscle weakness so maybe I was imagining I was getting it? But after a few months of increased weakness and fatigue, more blood work, and EMG and MRIs confirming my abnormal muscle activity and inflammation consistent with DM, I was sure, yes, I did have muscle involvement… yet I kept working, kept doing gigs even (I co-hosted and performed at a WomenROCK monthly acoustic showcase in SF; in September, we played a winery in Healdsburg (right) and Ghiradelli Chocolate Festival; we even went to Las Vegas end of October to play a Girl Festival). I basically trudged on thinking I’ll just keep doing what I’m doing…my body be damned…
If you were faced with a rare disease, and all of the treatments that were being proposed to you were not without risk, what would you do?
The rheumatologist was strongly recommending I start another immuno-suppressive drug called methotrexate, as at this point I now had both active skin and muscle involvement that didn’t seem to be managed with the meds prescribed thusfar; I was getting weaker. I’m pretty analytical and have this obsessive desire to learn everything I can about areas that interest me; DM was no exception. When it came time for treatment, I hit the internet, then the library with a close friend, and together we learned what we could about the types of treatments out there, and the latest studies on DM (which were few-especially longitudnal-over time-studies). The main issue for me was taking what I considered “toxic Western drugs,” namely methotrexate, a chemo drug. My research and time in the chat rooms and keep in touch meetings for DM told me that many people need to take these immuno-suppressing drugs for many years if not for life to keep DM under control. I wasn’t ready to begin ingesting toxic drugs for what I presumed could be long term just yet. Somehow I was convinced I would do everything humanly possible to heal myself first and only take toxic drugs as a last resort.
Thus began my first foray into all-things-natural in December 2008. I would beat this DM with alternative therapies! I told myself excitedly. Starting with bio energetics…