MS SoftServe, off and running!

Yippee! A triumph over the endless digital dilemmas, web master Bonita has figured it out (as always) and the video that describes the staging ground of MS SoftServe is up on the site! It’s also on youtube in an abbreviated way. I hope this video will help to explain why MS SoftServe is needed, and how we can make it a reality.

So now I switch gears to copy writer and layout artist (with the support of familial experts ) to create a brochure to spread the word about MS SoftServe to potential sponsors. Awaiting the delivery of the legal documents to register with IRS and get my 501c3 number. Then the fundraising aspects of the site will be functional.

For all of you out there who have expressed support in making this site a reality, I’m assembling a list that I will use as evidence of need when I approach sponsors. This will also serve as a mailing list for important announcements. While your writing… take an opportunity to request something that you would like to see produced on the site. The way to make the most of this site is for it to be a “For us, By us” venture. Join me in its development!

MS SoftServe Timeline 2

Bonita is finishing up the talking head film of me describing the need for MSSS and what the staging ground is all about. She’s tested and tweaked it in all the browsers and it should be up and running within a week. (she types with optimism)

I’m starting to work on the content information to provide to Pixel Corps so that they can start working on the flash animations for the different areas of the site. They will additionally work on some 3D graphics to spruce up the word heavy areas and tweak the films so they aren’t so choppy. Maybe we can do something like the story of stuff. Anyway… thanks to the brilliant guild style organization of PixelCorps- its a beautiful symbiotic relationship.

MS SoftServe- and so on, and so on.

When I started reporting on the status of MS SoftServe I think I had imagined something that would be more…. consistent. I don’t know… progression seemed like a reasonable expectation. Then reality happened and I’m reminded that with increasingly limited funds, a full time job, and a family its not surprising that this is moving slower than the polar ice caps are melting. (a sad metaphor, I know) Bonita, my web master, also has a fulltime job and while she has more free time, she longs to work on this fulltime. She lamented to me today that she pines for a time when she can labor over when something isn’t working for 24 instead of 16 hours. In the meantime I’m busy pushing 501c3 paperwork along so I can start researching grant applications, and I’m creating surveys, and writing proposals and sometime its hard to see the incremental movements. But they are happening. We are about to post the video that describes the need for MS SoftServe and the functioning aspects of the staging ground. On the home page of and youtube.

On a more exciting note, I met with Alex Lindsay, the chief architect of PixelCorps (The Pixel Corps is a guild for the next generation of craftsmen… digital craftsmen.) today. What an inspiring person. When I first met him in 2005/06 he was the spark that got me to “think big”. So that is what I did and thus I’m now connecting with him about how PixelCorps can develop elements of MS SoftServe. It’s all very exciting. The craftspeople at pixelcorp require production opportunities so that they can learn skills and experience the client feedback and interaction. There one requirement is that they don’t get paid. An ideal alliance if you ask me. Bring it on…

Something has changed

It is such an unusual experience having compromised sensory symptoms. The information and tools we use to interpret the world around us are generally consistent. We know when something hurts, or feels uncomfortable. We can even explain the details of pain or discomfort with metaphors and similes. My head is pounding like a jackhammer. Even the sensory changes have common comparisons. My feet have pins and needles from sitting wrong.

I can describe my dizziness with a number system, or scenarios that people can relate to. I feel like I just stopped spinning around and around in a million circles. I’ve refined and re-tuned my descriptors as I search for a way to have a handle on this ambiguous yet debilitating symptom.

Then last night something changed. In the evening after a long day at work, I started rearranging things in the kitchen. I was suddenly overcome by a surge of energy- as was immediately evident in my housekeeping. (something I usually don’t have much drive for.) I made steamed kale with shallots and tamari and some quinoa. I unloaded the dishwasher and loaded it with the sink’s contents, I washed all of the pots that had been socializing on the stove top for the past few days, I did 3 loads of laundry including the folding and putting away. I scooped the litter and swept the floor and read 3 chapters in my book. Now this may seem like a standard evening for many working parents… but for me this was a superhero moment. I hadn’t been that productive in this short evening time-slot in a long time.

What was that all about? I’ve been detoxing for 1.5 weeks and am re-cooping from the acupuncturist with visits to my chiropractor to even things out. Maybe this has something to do with it, maybe not. All I know is that although I continue to experience dizziness — something is different. Something is really good.

Acupuncture, a different type of needle.

Last week I went to see an acupuncturist. I had never done so, and after almost 20 years with this disease it is surprising to me that it is the case. I’m open minded, yet always felt that I would exhaust conventional medicine before going the alternative route.  As I explore the MS Recovery detox, seeing an acupuncturist seemed like a good complementary effort. As I’ve said, anything that might stabilize my world is worth a shot, or a needle!

It was quite an experience. I learned first hand, or shall I say first back, what cupping and scraping means.  If you have ever seen these ancient Chinese techniques exploited in films (Harriet the Spy) you know what I’m talking about. You know the one where glass bowls and needles are stuck all over the character’s back? Well that was me… although a bit less exploitative.

After all was said and done I had a modern art of hematoma on my back that makes Jackson Pollock look hesitant. But the truth is I felt great. Not sure about the dizziness… but great none-the-less on every other level. Apparently I have heat, and dampness and phlem as was evident in my 9 pulses. I went home with some suggested additions to my detox diet, as well as a daily vegetable juice to combat this condition. Oh, and dandelion root tea. I can embrace most of the suggestions and the juice recipe is very good. 

So I went home very optimistic that I would experience a change. As the evening wore on I was sensing something different, although I couldn’t put my finger on it. Unfortunately when I woke up the next morning everything was worse. Such that I didn’t go to work for 2 days and still felt worse over a week later. I’ve been hopeful that this much change would give way to similar recovery. (That’s the kind of optimist I am! ) When I visited with Dr. Verter, his thoughts were that she just did too much at once. (cupping, scraping, deep tissue and acupuncture) After two sessions with him.. I think I may be on a mend of sorts.  

At this point I’m just thankful that when I am seated I’m fine. It allows me to write and work and feel productive. If I didn’t have a break there… it would be in a much harder to cope. So, I will try to accept what is- and continue on with my efforts to be in the best health in the areas I actually have a say in. (ie. food and exercise)

Why not?

Since nothing conventional is relieving this dizziness of mine, I’ve decided to take the plunge and try the MS Recovery Diet. What have I got to lose? From what I’ve read… everyone needs to establish what their triggers are. I’m at a bit of loss in determining what those are for me based on what the book states. If you eat this, then a symptom is triggered. I can’t even begin to imagine that working for me. Maybe that’s because some of the symptoms I have I’ve been living with for over 15 years. Its tough to imagine eating something that makes it worse for the day. It’s so variable anyway! So being the open-minded person I am, I feel it’s still worth considering. As I said, what have I got to lose?

The book states potential triggers and I start with a detox. No caffeine, no gluten, no sugar, no dairy, no eggs, no yeast, no laughing, no joy.. no… okay I get the picture. Being that I already don’t eat meat I know what it is like to go without. But the part that kills me is no legumes! I pretty much rely on them for protein. So I went on their blog and asked them. And they made me scroll. But reading it didn’t make me feel any closer Then I found this post. Okay… is it me or does this just list possible triggers with out any theories or science sprinkled in? Okay, I realize this stuff hasn’t been medically considered and they don’t really understand the how and why of this, it only serves to report that some people do respond to these foods in a pejorative way.

In spite of these questions it all comes down to this: I’m dizzy and off balance everyday. If changing what I eat might help… sign me up.

So with shocking dedication I bid my fond love of coffee and sugar adieu and after a few short days eliminated all from my eating plan. If you had told me in the before time that I would easily slip in to this, I never would have believed you. But never before have I had such incentive. And never before has everyone I know been so supportive. It’s been a simple ride. Much more so than I had expected and on top of that…I feel I actually have control over something. How very satisfying!


A Stable Life, Despite Persistent Dizziness

Did I post this article already??

It was so significant to read as it ran a few months after my dizziness began… feeling as though I’m not alone in the unstable journey. I happily read “Multiple Sclerosis” as a cause … “Here it is”.. I showed everyone, as if they doubted my experience. Yet I still feel that need. Here I am, entering my 5th month with “persistent dizziness” trying to explain it to anyone who will listen. My family and friends are cursing this damn disease that leaves me this way. My 6 year old daughter complains daily that she is dizzy too. My colleagues at work help me to laugh through it as I need help getting things off shelves as the sensation increases when I look up. It’s all good, in spite of how absurd it feels not to be able to do the little things. It brings overt helplessness to this disease that I’ve been struggling with invisibly for almost 20 years. I suppose there are some good sides of that.

Since I started walking with my stabilizing stick I have daily conversations about MS… telling people who didn’t know and educating those who need more information about the variable nature of MS. It often requires a little armor on my part. Deflecting the long details about the people they know with progressive cases that keep getting worse, or those who say diminutive things like “well you must have a mild case” not knowing what they can’t see.

It’s been a rough ride these last 5 months. An experience that has warranted some big changes for me. An opportunity to exert control in a life where I’ve had so little. I will detail those shortly.

For now.. I’m getting off at the next stop.

LOL ag

Coping a new

Whenever I am trying to get my head around things, I turn to the dictionary. I’m not sure what is so satisfying about that process. Maybe it’s a control thing. Don’t we all want a little more control?
So here’s what says:

1. to struggle or deal, esp. on fairly even terms or with some degree of success (usually fol. by with): I will try to cope with his rudeness.
2. to face and deal with responsibilities, problems, or difficulties, esp. successfully or in a calm or adequate manner: After his breakdown he couldn’t cope any longer.
—Synonyms 1. wrestle, strive, persevere.

I think we should add one to that to better reflect the unique brand of constant coping that those of us use to manage our constantly changing completely unpredictable disease.

How about this:

3. a successful effort to persevere in spite of the odds when managing health changes in the face of uncertainty. ie. The ability to constantly reinvent yourself.

That is a bit more empowering and optimistic in my book. A friend of mine, who is also “coping” with MS wrote this most significant passage to describe her experience. It helps me to read, and reread it as I’m carving out my path. I imagine you might find it helpful too.

How often, as a healthy person do you concentrate on the division of mind and body- of soul and physicality?

We are one with our hair and our legs and our arms and our hearts and our bladders. They just work. They do what they are supposed to do. At times they hurt, or malfunction; we use words like stomachache or headache or leg cramp. But we don’t remove the leg cramp, hold it up to a light, examine it, ridicule it, scoff at it, cry about it, agonize over it and try to discover the physical and existential implications of it. A stomachache isn’t a dusty window into our future. Our minds and our bodies pass together through life with minimal conflict.

When you are diagnosed with MS a great divide suddenly emerges. What was once a happy synchronicity between body and mind becomes at worst a war and at best a dialectic. I am well. I am sick. I am a combination. I am a healthy person that lives with a disease. I am a diseased person with moments of healthy. My arm is numb because I slept on it funny. My arm is numb because my T-cells are attacking my myelin. My arm is numb because I imagine it to be that way. Suddenly you are engaged in an unceasing dialog between mind and body.

On the best of days you can mute the conversation while you are engaged in being a student, or a professional, or a mom. But at the end of the day, when the quiet descends and the work is put away and children are asleep, the anxiety of newborn aches and pains, of sound futures uncertain tuck themselves in between your sheets and lie with you at night.

And so begins the dialogue of emotional healing. You begin the negotiation between mind and body. You build coping mechanisms and you rebuild and restructure until you are able to find a way to live at ease within your body and its numbness and its foot drops and its dizzy spells. You find the peace you need, and you get through a day, a week, a month, then suddenly there is something new. A nerve misfires or fails to connect and suddenly your body begins the conversation anew and you begin the negotiations again. This time, though, a little stronger, fortified by the fact that you made it to ‘ok’ before and can get there again. It is a challenge in a world when tomorrow always seems to be in focus while today is a blur, to stay centered on the here and now. Today I walk, I wheel, I think, I love, in the best way that I can—with the tools that I have. Tomorrow I will do it all over again.

I am so moved by this piece. I find myself reading it over and over again. We all have different experiences with this disease. We all have different mechanisms for coping with our own variation. But what we do all have in common is described exactly in these words. Thank you for letting me in to read about your experience. It means the world to me.