Author Archives

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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)

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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

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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

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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 Dictionary.com says:

Cop•ing-noun
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.

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Patients Like Me- Controlled Learning?

patientslikeme.com

Back at its inception patientslikeme.com invited me to participate in its innovative startup for individuals with Multiple Sclerosis to compare notes and record their disease course. I registered and planned to get back to detailing my MS timeline when I “had a chance”. It kept getting pushed to the bottom of my priority list until the New York Times ran this article in their magazine section. It’s amazing the power of people sharing information about their disease experience and how that can influence and drive the big pharma. After reading the article I can’t help but to wonder if there is opportunity for collaboration with this group, once MS SoftServe is up and running. I’m gather my list for these outreach letter once the 501c3 is in tact!

I’ve used that opportunity to research (throw in dramatic sound track to illustrate fear) this latest symptom of mine that won’t go away. That being dizziness. (more soundtrack if that suits you) I’m hoping to learn what types of drugs other people are taking and what their experience is. I didn’t learn what I set out to, although I didn’t learn anything that set me back on my emotional path either. I will continue to visit it and see what comes of it.

more later~

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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.

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a dizzy affair

I have been trying to write an entry for over a week now. (and here is my traditional disclaimer– If you would rather not learn about symptoms that you may never experience…stop here.) I literally have seven drafts written that I haven’t published. This vertiginous experience has been trying…to say the least. I suppose that any of the sensory MS symptoms affect us on a different level, an additional level. How we sense the world around us invariably inpacts how we feel emotionally about the world and our place in it. Maybe this is why I can’t seem to find to words to ground me. I keep searching for coping mechanisms and none seem to work. I guess I will just have to ride this storm out.

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Vestibular MS- “How are you?”

I haven’t posted the warning to say that “if you aren’t interested in reading about symptoms you may never experience” in some time. So let me do that now. Consider yourself well advised and proceed deliberately if you so desire.

I’m at day 5 of level 7 dizziness.. and I continue to struggle with how to establish my coping mechanism. Something about giving it a numeric value helps a bit. It’s so ethereal and that makes it difficult to convey…assigning numbers helps to ground it all- if you will. Not unlike Hurricanes..those whirling winds that can only be effectively communicated to the massess by their 1-5 categories. Any sense of control will do. I even believe that since I began the process this internal storm has been downgraded to a number 6 down from 7.

This all began back in December last year and after the steroid infusion I was patiently waiting for relief that was slow to come. But it did, sort of. Once this whole dizziness thing began it was hard to determine the progress… or progression. Partly because the experience with it was so variable.

One of the challenges of invisible MS is how to respond to the daily queries of concerned individuals. “How are you.” I”m fine. Really? No, not really… but how I define fine changes on a daily basis. And what is the point of saying “still dizzy” ? What if dizzy is my new norm?

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MS SoftServe- status

The web development is moving along. The video describing the need for MS SoftServe is edited and we are fine-tuning it. I’m hoping that my passion for this website will be evident in the video. I am by no means a professional spokes person, but my hope is that by sincerely conveying the real need for this customizable learning resource for everyone with MS (or any other chronic illness for that matter!) will be recognized. We will post it and plan for the rest of the staging ground to come together in a reasonable time-frame. (The eternal optimist I am!)

Our next order of business to create survey so that we can learn first hand what people with MS need/want to learn about. Feedback is gold when it comes to our mission. In more ways than one. With your input we will not only establish what this community needs- so that the site can be built to satisfy this need- but we will also be able to show the sponsors how important it is that we have a customizable site to learn from.

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Dizzy Defined

Here is the Roget’s entry for variations on a dizzy

  Roget’s New Millennium™ Thesaurus – Cite This Source – Share This
Main Entry: dizzy
Part of Speech: adjective
Definition: Having a sensation of whirling or falling.
Synonyms: giddy, lightheaded, reeling, vertiginous, woozy
Source: Roget’s II: The New Thesaurus, Third Edition
by the Editors of the American Heritage® Dictionary.
Copyright © 2003, 1995 by Houghton Mifflin Harcourt Publishing Company.
Published by Houghton Mifflin Harcourt Publishing Company. All rights reserve

I love the words… for me they are onomatopoeia. Don’t the words themselves sound like what they are describing? giiiiidyyyyy, reeeeeeling, wooooooozy. Not so much with vertiginous but actually saying it makes one feel a bit dizzy! Or maybe it is just me. I am seeing the world through a dizzy lens at the moment.

I woke up this morning and found myself feeling, let’s say- vertiginous. The kind of dizziness that every time you move the world rotation is kicking the movement up an extra notch. Not ideal for the NYC commuter experience that usually starts my day.

I spent a good twenty minutes sitting there trying to evaluate my level of dizziness. How can I determine whether it is safe to go to work or not. I decided I need to chart this out, to make a litmus test not unlike the standard neurological exam. With points and numbers… and depending on my score… I will make the decision to work, or not to work. To commute or not to commute.

Maybe when I’m through I will find other significant uses for the test,…say to determine what to eat for lunch and other indecisive moments. Something tells me this will be very useful.