Archive for November, 2008

Living with MS

The Band, Summer 2008. We've been together roughly as long as I've been sick. (Jun Nakamuro Photo)

Yambique, Summer 2008. I'm proud of being able to fulfill a childhood dream despite this disease. (Photo: Jun Nakamuro)

Last month I celebrated my 5 year anniversary of being diagnosed with Multiple Sclerosis. If you don’t know what MS is you can google it easily enough for details but basically it is a little understood neurological disorder that strikes active healthy people in their prime. There is no known cause or cure. Women are 3 times more likely to get it than men. It’s common in the Northern latitudes but rare near the equator. If you look at lists of famous people with the disease, there are a lot of artists, poets and musicians there.

Sure, it has changed my life, and not all for the worse, either. Yeah, I can’t work enough to be the main breadwinner for my family (and thankfully I don’t have to) and sometimes I don’t have the energy to take on a lot at once. But overall, I am doing very well. I still have some minor symptoms but have not had a serious exacerbation for quite a while.  Generally, the disease will progress over time, eventually leading to serious disability. The prospect of ending up in a wheelchair someday sure makes you evaluate your life! At this point I intend to celebrate what is going right and enjoy it!

In August of 2003 the disease hit me suddenly. I know the exact day. My former band, Songo, was playing at Boulevard Park. We were the openers for a festival, the first to play out of 4 or 5 bands.

This picture was taken the last day I ever had feeling in my left hand.

This picture was taken the last time I was able to feel my left hand.

I like playing early, because once I’m done I can relax and enjoy the other music with that great high you get from just having played yourself. On that day, though, after we finished playing I was suddenly unbelievably tired. Zonked, like I had been drugged or something. I lay down to rest on the grass, then asked Mr. beatgrl to take me home, I did not even think I could stay awake to sit there and watch the rest of the music. The next morning when I woke up, my left arm and hand were asleep, or maybe I had pinched a nerve or something. I went to the chiropractor with no relief. There was still a loss of feeling in my hand. Over the next 2 months my symptoms worsened. First my toes felt numb, then my feet, then my lower legs, then my whole legs, the numbness spreading up my torso. And then there was the debilitating fatigue. The only time I have ever felt so tired was when I was pregnant. I thought that was normal for pregnancy, but looking back, could it have been the MS? Who knows?

So I did not know what was going on but I kept going to work, and even managed to get in two backpacking trips! One trip was quite a nightmare, what with not being able to feel my feet. The symptoms came and went, then slowly abated, but the left hand stayed the same.

Yeah, I was stressed out. Does anyone else remember how much that summer of 2003 sucked? Those were dark dark days. The G.W. Bush administration was bungling that post 9/11 national unity, our civil rights were disappearing with the Patriot Act, and then we had just invaded Iraq.  I cried in the car almost daily listening to news. Then on top of that I was dealing with a major marital crisis. These things are not conducive to health.

It was my hair stylist and friend Marjorie who was the first person to figure out what was wrong with me, and eventually, by October, doctors were able to confirm the diagnosis. The thing is, I could not make myself accept the immune modulating drugs the neurologists recommended. I’m skeptical about messing with this immune system we barely even understand. The doctor told me that these daily injections I can start giving myself might slow the progression of the disease by 30%. Not cure it. Not stop the progression. Not even slow it very much. Oh, and there are side effects. Huh. I went to the internet tubes to read and read. Wow, many people are doing great without drugs, many people are getting worse on the drugs. It did not take long for me to conclude that whatever it is, if my body is attacking itself, then it can heal itself, too. I decided to give my body the best chance to help itself heal. That’s when I changed my diet to an anti-inflammatory one. I eliminated wheat and dairy. I went to a naturopath, got tested for food allergies and lead poisoning and went through a detox regime. I started eating fish and flax oil.

I rested over the winter (if you can call it rest with the marital crisis and all), got some counselling, and went back to work that next summer season. The following fall of 2004 I got my first full time job with benefits. (Woot!) It was at a prestigious environmental nonprofit. I liked it but found it stressful as well. Within six months I could barely cope, and I started to lose my vision. So I quit and spent a month on the couch recovering. After that I had a real awakening. Since I was not commuting to work 30 miles away anymore, I had time for riding bikes to school with my son, doing errands on foot instead of in the car, and really loving the city I live in. Lately I have been able to balance my life in a way that doesn’t knock me out.

The bunny slope is fun, too!

The bunny slope is fun, too!

I’m not doing more than I can handle. I’ve slowly been able to return to work with the Forest Service as a part time temp and so far so good! I don’t know if I would be feeling as well as I am now without the support of my wonderful best friend and partner Mr. beatgrl. The healing of that relationship has had the best rewards of all. My friends and family have been great. (I love you all!!)

A few of my chronic illness tips:

Slow down and take time to enjoy all the things you like to do. I’ve enjoyed indulging my creative side with music, writing and crafts. Instead of a constant rush rush to do errands and housework, sometimes I will allow myself some downtime to read or do a crossword.

Learn to say no – don’t take on too much. Every time I try to work full time I end up too tired and useless at home. I’m still trying to accept working part time without guilt. I need at least one rest and recharge day a week. Then I am a better mother and wife and everyone wins 🙂

Eat the best quality food you can. Pretty obvious. But nothing like a serious disease to make you determined to keep the poison (I’m looking at you, Krispy Creme!) out of one’s body. And I justify the extra expense of organic food because it is my medicine.

Avoid stress whenever possible. See below for my favorite way to lower stress.

Yoga has been magic for both body and mind, and could be the most important thing I’ve done for my health. I started at a Yoga for MS and chronic illness class, then when I improved I was able to go to classes at a “normal” yoga studio courtesy of a grant from the MS Society. I can’t say enough about what a difference it has made for me.

It’s amazing how many of us, mostly women, are suffering from these mysterious auto immune disorders. Fibromyalgia, pulmonary fibrosis, lupus, rheumatoid arthritis…and that’s just people I know well!! MS is practically epidemic here in the Northwest. Since these are “invisible” diseases for the most part we don’t realize how widespread they are. What has happened to our environment to sicken us all so? And why can’t we figure out the causes? I hope someone can find out, because what we really need to do is prevent it. Until then, we can try to make sure our quality of life is the best it can be.

The traditional five year anniversary gift is wood. Maybe this is the year to put in those apple trees…


Iron Man


We rented Iron Man last night, which was made for a pretty satisfying evening of family movie entertainment. For those of you out of touch with popular culture, Robert Downey Junior plays Tony Stark, a Howard Hughes type billionaire inventor who ends up inventing a badass flying/fighting suit so he can combat evil, etc. The CG effects were not too distracting (I’m looking at you, Transformers), and it was wonderfully tech-geeky. The designers of this film did a great job of creating a slick style around all of Tony Stark’s inventions and surroundings. His computer-controlled house and lab were impressive, not to mention the mechanics of the suit itself. Did anyone else think that the power device in his chest looked a lot like an old viewmaster slide, though? The cast was good. Once again Gwenyth Paltrow was stuck with a woefully underwritten part, which at least was better than that cringeworthy character she was saddled with in Sky Captain and the World of Tomorrow. Jeff Bridges as the villain Obidiah looked great with a shaved head. Terrence Howard also good. He reminded me of a young Forrest Whittaker. Robert Downey was fantastic, very watchable. There could not have been too much of him.

Luckily there was much more of him. The special features were about 4 hours worth and very well done. My 8 year old usually whines with boredom during the talk-talk-talk, but the producers edited the interview footage together with interesting action. [Aside-I was reminded today of the Lord of the Rings special features, which should have won an oscar in its own right – I thought they were more interesting than the movies themselves.]

So, pretty good, I hope for a sequel.

Heading to civil rights rally

Shameful that voters in California voted to specifically take rights away from certain people, isn’t it? Anyway, I’ll be out there for at least a few minutes (before the boy’s soccer game) showing my support for gay and lesbian marriage. Or their CHOICE to get married or not.

So what sign should I bring?

Something completely different

I found this picture at the Stranger Slog somewhat intriguing and though I’d share it.

At Gallery4Culture, dermatographia artist Ariana Page Russell takes a major step forward in glamor shots that use temporary tattoos made of photographs of her own blushing skin (and a wall covered in her skin):