Posts Tagged "methotrexate"

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) Pt. 3

Posted by Aoede Muse on Mar 12, 2011 in Musings | 1 comment

All This Health Stuff’s Getting in the Way of my Music!!
As you can probably tell based on the 30+ shows scheduled for 2009, while all this health stuff had been rearing its ugly head in 2009, through fatigue, depletion, weakness and biopsies and endless blood work, infections and 29 doctor appointments, I was still determined that music was my lifeline-my pathway to healing. I just looked back in my journal, and here’s what I wrote in early 2009:

…these first few months of 2009 I have been pretty weak and sick. How does all this relate to music?? Because it is about the state I am in whether or not I can be creative or write, or keep up with performance, tours, communication with my friends and family. Maybe I am keeping this secret from my fans because I don’t want to share this vulnerability, and I don’t want to risk some or other artist thinking, ‘I won’t ask her to do a gig-she’s sick and unable to rise to the occasion.’

I think it’s telling that even then I was thinking about the implications my state of health was having on the music (not the other way around!)

“When we get too caught up in the busyness of the world, we lose connection with one another – and ourselves” Jack Cornfield Quotes

I had mentioned previously that Dave, my husband, and I attended a music strategies workshop in Los Angeles, California in June 2009. Despite the workshop’s physical toll on my body, I returned to San Francisco super inspired and determined to make changes in my life, my communication with my friends and fans, and my songs. I really pondered who I was as an artist and realized it was about the connections: making connections with my friends, touching them, not being afraid to be vulnerable or show myself to them. Realizing it was about YOU, your connection and relationship to me through my music, and not just “the songs” was a huge insight for me! I now was desperate to write new music that would reach people on an emotional level, to touch them and inspire them to feel. For nearly a year and a half, I had been mentored privately and studied song craft intensively; it was time to apply my blood, sweat, and tears to write new Aoede songs that could stir people’s souls. It became so clear to me: find out what inspired and compelled me. Figure that out, and I could inspire and compel in my songs. But how could I reconcile my need to connect, my want to show myself, with holding back what I considered my private health issues?

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?