Pixel Bound

This has been an unusual couple of weeks. I have felt the need to blog so many times, and have been unable to get here. Some days I find myself crafting the opening phrases and titles of entries that never find their way to the pixel.  I’m starting to recognize them as a neurological archive of drafts. Will I ever get back to them or will they languish in word purgatory? I wonder. It also gets me thinking about my creative process. I’ve been learning a lot about how I create,  edit, and ponder my life experience. It has been quite profound. The power of my own words has surprised me as I use them to console, inspire, and comfort me.  I hadn’t realized when I began this blog in 2007 not only how healing it would be, but also its potential as  a creative vault that when opened has great impact on my today.  It amazes me in different ways continuously.

Yesterday I made a bad decision. Although I was hesitant to admit it, I have been relatively dizzy-free for 3 weeks. It happened gradually, with small set backs caused by certain movements. This past week however, I’ve been able to move in ways that had been previously off limits.  Most notably, I could look up without being left in an unstable place. I have even been increasingly comfortable telling people of these improvements,though it has taken me 15 days to feel truly confident about doing so.

I have to admit too, that I began to slide off the “MS Recovery” style diet a few months ago. While it continues to inform my eating decisions, the rigid requirements of doing without certain things – is no longer in play.  I quickly recognized that this wasn’t having  impact on my dizziness and though I know the change of eating is a long term investment for MS…  and overall health improvement.. however, the thing that kept me on it was the hope that it would impact my dizziness. Somehow when that didn’t pay off after 5 months I gave in to temptation.

This is disappointing to me on some levels. I like how I feel when I’m eating by those rules. I have less temptations and compulsions toward feel good food. (like chocolate!) But along with those compulsions comes food that feels happy… and while I know that in itself isn’t the best way to eat… I missed it.

Okay… back to my egregious error. I was very excited yesterday to actually do a load of laundry… take it out of the dryer.. immediate fold it and hang it up so it doesn’t all sit in a wrinkly mess only to be dried again… and again.  It’s those little things.  Anyway… I was unloading.. and folding and hanging on a rod in the basement over my head. With some repeats of this motion I found that I was feeling nausea. But… I pushed ahead figuring I would be done shortly. Nearing the end, I was able to hang the clothing up without actually looking up to make sure the hanger was properly placed. Ah those little skills we accumulate!  Unfortunately, as I completed the task I realized I went a bit too far.

And that dizziness still lingers 24 hours later. That is just wrong! I was just folding some laundry! If my husband didn’t already do 80% of the tasks our life requires, I would pass this off to him. But the reality is I get pleasure from the tasks that are small and satisfying. Ones that don’t require edits and rebooting, and analysis. Very succinct, a start middle end. Even unloading the dishwasher brings a certain amount of satisfaction in my day… balancing the complicated tasks with the quick and should be easy ones.   The good news is that I am fully capable of sitting at my computer, writing in my blog and submitting grant applications on behalf of MS SoftServe.

Last week I met a faculty member at NYU who has had MS for 35 years. He has his challenges, as we all do.. but he offered some words that help him carry on…  “At least I wasn’t born in Sarijevo”.  I guess that speaks to me as I try to keep everything in perspective.

At least I was born at a time that traverses the digital age.

So much to chew on there.


Dizziness Reduction and Alternative Reporting

So here I am, a month after starting the MS Detox Diet… or my version of it. And my dizziness that began way back when in December is subsiding. It happened so gradually I practically didn’t notice it. In fact the change was so subtle at first that I couldn’t determine what felt different. Just that something good happened. And the sensation is still present when I move certain ways- reminding me not to get overly confident. I’ll turn my head as I’m walking away and everything shifts. But for the most part it’s taken a break. It’s off center stage and blending in to the scenery. No longer does the world as I perceive it change when I go from a seated position to a standing one. Such a smooth and gradual transition… that it wouldn’t be difficult to forget. But now, when people have the courage to ask me how I’m doing… I excitedly report something other than status quo. And I remind myself to not get overly confident as I tell them that is crops up periodically. Don’t get used to this … because it can change back in a second. Since my “recovery” I have reverted more than once. As Dr. Verter, who has been treating me more regularly said, “don’t expect that this will be anything but a minor setback”. And he was right. And so it is. But I will keep my fingers crossed in an “un-superstitious” way. Hoping, praying? To the higher power that exists in this universe that this will be all but a distant memory to recap in a “what was” report of my Multiple Sclerosis.

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!