Posts Tagged "muscle weakness"
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. 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.
Dermatowhat?? (on living with DM) Pt. 2
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)
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??
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