Behind the Scenes

For the last week or so I have been home with plenty of time to write in my blog. So why haven’t I done so… There is something about my experience with dizziness that has made it difficult to be productive in spite of the fact that I’m not dizzy when I sit at the computer. The emotional response to anything that MS puts on my plate is multi-layered. Nothing made it clearer to me than reading My Stroke of Insight by Dr. Jill Bolte Taylor. The text is having a tremendous impact on my day to day experience with my compromised brain.. and I’m writing about that now- behind the scenes.

Look for that post soon.

Thanks for not writing “check in on this blog” off your to do list~

ag

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!

ag

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

Not to put too fine a point on it…say I’m the only bee in your bonnet.

Nothing like They Might Be Giants to refer to that which is unclarifiable. This self assessment has been such a struggle for me. I like it to be a bit more concise. A bug bit me. There is the spot. It itches. I’m limping because I have MS and sometimes when I walk too far that happens. I’m dizzy. Can’t tell you exactly when or why or if I’m better. I’m just dizzy. Sometimes more than others. Every morning I seem to be on a reset as I wake up very dizzy. Although at some point today I was able to look up with out feeling like I wanted to topple. So thats an improvement.

I’m currently using my freetime (on the train) to asses the instructional design of the proposed
symposium for the NYC chapter of the MS Society. It’s been an incredible process. Just putting my mind in the instructional designer role is such a creative outlet. While i’m thinking of how to add to this existing project, a million other ideas are coming to me about mssoftserve. The creative engine is tremendous. By merely engaging… it begets more and more. I hope there will come a time that I can dedicate all of my creative energy to these learning sites.

Vestibular- and other highlights of my growing vocabulary

Far be it for me to explore the uncharted grounds that google exposes one to (see MS SoftServe) but in this case I wanted to get more info about this vestibular test so that I can be more specific in this entry. It’s always interesting to read the variations of phrases that describe what MS is… of course how it reads depends on the specific slant…the angle. The one that turned up in this search contains some jewels.

Multiple sclerosis

Multiple sclerosis is a disorder of recurrent, inflammatory CNS demyelination due to underlying autoimmune disorder. The onset is usually at 20-40 years of age. Episodes begin over hours to a few days and last weeks to months. Typical symptoms include optic neuritis, ocular motor dysfunction, trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia, and bladder dysfunction. Vertigo, at times mimicking vestibular neuronitis, is a presenting symptom in less than 10% of patients. Dizziness or vertigo occurs at some point in the course in a third of patients. Few patients present with hearing loss due to brainstem involvement.

(I enjoy reading more scientific descriptions of the disease. I’m not sure if it is the high-level vocabulary or the lack of drama. I like that “trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia” Those are great words )

So I went for the test that would determine if my balance and dizziness issues are my MS, or not. (once and for all?) I was warned that it was likely to leave me dizzy and nauseas- so I made sure to bring my mom along to provide an escort home through NYC commuter subway traffic. We had no idea what to expect, and could never have dreamed up the elaborate reality of what this exam actually was. (Although a couple hours watching the sci-fi network may have helped! And so my film references begin… starting with Altered States.)

We were called in after the normal pre appointment- paper-work, sit-and -stare-at-your-feet-experience of the waiting room. After being lead through the maze that is Mt. Sinai, we were brought to a room that was large and had high ceilings. There was a simple looking examination table with an unusual cloaked apparatus above it. But that wasn’t where your eyes were drawn. (so to say) Instead they are immediately focussed on the cylindrical structure behind it. (Reminiscent of the orgasmatron of Woody Allen’s futuristic Sleeper) It was all white with a black chair that was hooked up to a mechanism that would allow it to spin. And to top it off was what appeared to be head gear.

Looks like we are starting with this most intriguing unit. I sat in the seat, with head-gear on that held a reflective glass in front of my right eye-a digital link requiring no light to transmit. (City of Lost Children comes to mind) In complete darkness, with the chair spinning slowly, I watched the red dot, flashing lights and total blackness. Sitting in the dark I was reminded of the book I recently finished (that my mom was currently reading) The Wind Up Bird Chronicle, by Haruku Murakami- in which the main character spent a period of time in a well- experiencing the darkness and other transcendental experiences for which Murkami is an expert descriptor. After a period of time with sensory deprivation, spinning slowly, look-at-red-dot, flashing-white-bars, don’t-close-your-eyes, how- can-you -see-what-I’m-doing-in- this-pitch-lackness, this stage of the test was complete. I exited the cylinder with a dizzy sense – trying to regain my earthly presence.

Next stop…tilted table with head up, darkness cloak, shoot-warm-air-in-to the-inner-ear-follow-the- red-dot-so that you feel nauseas and dizzy test. Then the other ear. Then the same with cold air. Then the other ear.

Then one more test in the cylinder. I’m not sure after all of this that it is reasonable for anyone to have vestibular stability.

So… it was determined that I am dizzy and nauseas and need a coke to soothe my stomach. Oh, and that all my responses are completely normal and that it is probably due to my MS. Thanks to Mom for being there to bear witness and steer me to that coke.

Oh..am I back to square one again?

Beep..boop…beep. “Dr Verter… can you squeeze me in tomorrow?”