Lissabird Makes Good: November 2009

Monday, November 23, 2009

Possible cure for MS could be one trial away - ABC 4.com - Salt Lake City, Utah News

Possible cure for MS could be one trial away - ABC 4.com - Salt Lake City, Utah News

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This sounds like potentially exciting news for everyone with autoimmune disorders, so I thought I would put up a link. Doctors at Johns Hopkins have found a way to "reset" the immune system and keep it from attacking the body. The problem is that they are struggling to find funding for the the last stage of trials. The patents on the drugs used have expired, so big pharma will have no part in funding this treatment which has so far CURED 90% of MS sufferers who have tried it.

In the ultimate David and Goliath narrative, a woman from Salt Lake has decided to raise the millions needed herself to help more people get this experimental treatment, and complete the trials in hopes of getting FDA approval. I decided to help, and recently asked her if I could make a pendant in her honor. She chose a phoenix for her design since a cure for MS would mean nothing short of rebirth.

Learn more about Michelle at CureForMS.org
You can donate there, or visit my Etsy Shop to pick up your own Phoenix pendant!

Friday, November 20, 2009

20 Years

It's here, friends. The 20th anniversary of the accident that got me into this entire mess is today. I have been rounding up for a while now... "20 years of pain," I would say to myself, but I knew it wasn't completely true. As if 19 years was really that much better.

As of yesterday, I'm back at work on the dumb book, I mean the wonderful book about the last 20 years of my life. I have been ignoring the book for quite some time, but going through those all-too familiar words yesterday reminded me of an amazing revelation that came from the writing process. So even if I don't sell the book, at least I have some peace, right? I realized that being in this much pain since I was 10 years old hardened my spirit just enough to face all the crap with my mom that was in store. When doctors accused me of lying about the pain, I had to develop an inordinate amount of self respect and self love so that I could continue to defend myself. When my mother lost her mind to mental illness and tried to take me with her, I was able to save myself. (The infamous) THEY say that most people never make it out of family situations like mine. And just look how functional I am!! So at least I have that going for me... which is nice.

But if given a choice, I would choose no pain at all. (duh!) This is why I have to offer props to science! Another RSD Blogger recently posted some exciting news that was published in Scientific American about Glia cells being responsible for chronic pain. The frustrating part, is that I have been asking for one of the medications that is supposed to suppress the Glial response for over a year now, with no luck. Anyway, this is the article if you're interested. http://www.rsds.org/2/library/article_archive/pop/Fields_ScientificAmerican.pdf

So that's where I'm at today. I'm tired. I'm tired of pain, and having it be a factor in every choice I make from walking the dog to having children. I'm sad about all of it, but pain has been such an integral part of my being for so long, I know that my life would be completely different today if I had never stepped in front of that car. It's a question for the ages I guess. Without the pain would I still be here with my amazing family, or would I be stuck in my mother's insane alternate reality. That's a way-homer...

Who am I?

I have lived with Chronic Pain for 20 years-- that's two thirds of my life. I have RSD/CRPS in my left foot as a result of an auto/pedestrian accident when I was 10 years old. RSD has been called one of the most painful diseases out there, and the stress of it on my growing body caused a whole host of new problems. After a few years, pain took over every inch of me.

A few years ago, I decided to look at my health (or lack there of) from a whole new perspective. Whole, being the operative word-- whole body and mind. I have resisted the idea of the mind/body connection because, to me, that meant the pain was somehow in my head. But I have come to realize that of course stress would affect my overall health and my pain level.

So I decided to face the greatest source of stress in my life, even though it had been one of my most closely guarded secrets: mental illness devoured the last recognizable shreds of my mother's personality when I was a teen. I didn't know what was happening, and I worried that it was somehow my fault (because she told me it was). We didn't really have the internet back then (Yep. Feeling old-- and loving it!) and mental illness is one the last taboos to fall, so I was pathetically alone in my attempt to understand my life. This is my shout out to anyone else stuck in a similar situation. Life can get better, but you have to take care of yourself first.

My mom eventually did take her life-- a few weeks before I found out that I was pregnant. Suddenly, I found myself facing motherhood, and feeling slightly less than ready for the task. So I started writing. I wrote about my mom. I wrote about living in pain. Then the two began to intertwine in ways I had never let myself consider. It was an amazing experience.

Once the mess in my head was a little more organized, I went back to the doctors to learn all that I could about what happened to my body. I read the research myself, I did everything I could think of to break the pain cycle long enough to let my nervous system reset. Regular massage and chiropractic appointments lowered my pain levels on their own, but on top of that I did yoga, walked regularly, and took a laundry list of supplements and natural remedies. (Most effective: Fibro Response by Source Naturals: Magnesium, B and D complexes, MSM and Apple Cider Vinegar) Check out the Body Project Tag to see what I did.

I still have RSD/CRPS in my foot and I always will. But I learned to separate that from the pain I felt in my other limbs, back and face. I have determined that it was all a giant breakdown of my body's natural cycle and ability to process pain signals caused by the RSD, and the stress of losing my mother. This breakdown is sometimes called Central Sensitization Syndrome or Fibromyalgia. The way I thought about the pain went from it being a horrible disease that would never go away, to being an interruption that I could correct.

I'm working on it.

Monday, November 23, 2009

Possible cure for MS could be one trial away - ABC 4.com - Salt Lake City, Utah News

Friday, November 20, 2009

20 Years

Who am I?

me and the hubs

Rosabella Eliza Alice

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