Tag Archives: multiple sclerosis

by

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.

by

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)

by

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

by

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

by

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.

by

Magnetic Resonance Imaging…and other false hopes.

Back in 1988 when I had my first MRI, I experienced up close what was, at the time, high-tech. I lay in a very small tunnel housed in a large square magnet and “relaxed” for 90 minutes while I listen to the banging, clanging and other loud noises that would produce images of my brain. The films that I carried in a big yellow envelope to my newly assigned neurologist had the evidence of what was to become my new identity. Multiple Sclerosis. Stamped on my forehead before I had even determined what kind of adult I might become.

Twenty years later the technology has improved. The open air, musical soundtrack, and audio link to the technicians outside- all created an environment that was more conducive to a relaxing experience. Yet I’m not sure I see the point of what is my 7th MRI.

I was diagnosed quicker than most people I’ve met. My symptoms were classic and with the MRIs in hand- my spotty myelin made it a no-brainer (if you will). I celebrate the technology that made the discussions of psychosomatic symptoms short-lived.

But ever since that initial experience, MRIs have only served to confuse me. It was a few years ago that I was told that there may be scars that have no related symptoms and symptoms that have no related scars. (that would explain the vague mri observations of my neurologists over the years~) Okay then. What do I do with the results? If my MRI comes back with a number of new “activity” spots and I have no new symptoms should I worry? Or if I have a wealth of new symptoms that aren’t showing up on film…should I be annoyed? I’m coping with the symptom..shouldn’t there be something to show for it? What is the point of this test if nothing on it has any significance? Why do I get excited with every one that there might be a new interpretation? I keep that hope alive- Maybe they’ll find the holy grail this time!

I just recently went through an episode (see Vestibular- and other highlights of my growing vocabulary) and I anxiously awaited the results in hope that is would provide insight and then ultimately a treatment for my dizziness and impaired balance. I’m not sure why. I suppose that is the nature of my unfailing optimism. Maybe this time they will see something. But they didn’t. They answer my question as if it is the first time I’ve heard it. There is nothing we can do for this symptom. There is no new information that the MRI is providing.

ie: Add it to your list of things you can cope with.

by

MS SoftServe Progressive (in a good way)

Slow but steady. The text for the “staging ground” is being posted. Its the “Don’t Worry Be Crappy” theory in full force. More editing is needed… but it will do for now.

So that text will be up in a day or so. But a bunch of text describing what will be isn’t much. Words get boring and don’t hold the attention span for long on this multi-media ride that is the Internet. So where is the video?? Its in the proverbial can…just needs a little bit of editing. It’s unfortunate that I didn’t have Final Cut Pro handy when I was recuperating from my Pancake House burns. That would have been a very productive week. No, I spent my days dressing wounds and writing angry letters to the Better Business Bureau.

I was hoping to find an NYU student who would be willing to do the editing for a little extra cash. (little is the operative word) Unfortunately they are too busy with coursework. Damn those priorities!

On another note: SoftServe Matters, the nonprofit that LegalZoom is processing is proving to be a much slower process. I check its status every other day. It makes me anxious because I know that once it is official there will be grants to apply for and proposals to write.

It’s very much hurry up and wait ride. Wanna go for a spin?

by

It is…no, it isn’t….yes it is.

Just home from the visit with the Neuro-Ears Nose Throat expert. After a brief synopsis of my almost 20 years with MS and balance issues…emphasizing the Vertigo of 1989 and ending with the most recent bout of dizzy/off-balance/ambiguity.

I am now told that contrary to the prior consideration that yes,  it is my MS.

Okay.

Not sure why I’m always feeling that I should have known, or seen any of this enigma disease coming. It’s because I’m constantly thinking and analyzing and trying to make sense, or have control of this lot in life. I think I’m hard wired that way. As fate would have it…this completely unique, totally variable and unpredictable condition is like a CarTalk episode stagnating at Stump the Chumps.

Just when I think we (me and my treatment team) have a handle on it… we turn out to be throwing hypotheses around the room haphazardly. And that leaves me thinking…meta-thinking actually.

If only I could sit back and let it play itself out.

I’m scheduled for a test with a Dr. Dai. It’s a visual/aural test that I am told will likely leave me extremely dizzy. I was instructed not to eat 1 hour prior. Vomiting is a common side effect of the test and they apparently prefer dry heaves over content.

Since my appt with Dr. Cohen, I have been very expilary (a word my daughter made up-meaning more than very) dizzy. Now I need to figure out how to get out of the city at rush hour while experiencing said dizziness.

Looks like a job for Dr. Verter!

more later….

by

Sticking to it.

My dizziness has seriously improved. Dr. Verter comes through yet again. So, I have a much better position on the earth… not completely stable…but one that is far more secure than I began 2008 with. I’m not sure how soon after I left his office that things really kicked in for me. It’s a subtle and gradual process that has left me feeling completely different..in inexplicable ways.

So I began to reconsider my trusty stick. Do I still need it? My balance is by no means perfect, but that has always been the case. So I did some tests without it. Rode the subways…slowly walked up the stairs sans stick, and I realized what I think I already knew. The stick is an important announcement and a reminder. For the prior…the world at large is the audience and for the latter the target is me.

It has been a significant help to make my invisible condition..disease…identity (what is the right word here?) present…apparent… evident. People rise to the occasion in ways that I didn’t expect. Be it a subway seat or holding an elevator… In many ways it let’s the societal cream rise to the proverbial top. There is a lot of good out there and if people are given the opportunity, they crack open the solitude of commuter stance to reveal the person behind the mask. I hadn’t realized how much power there is there. It makes me feel good about the people I’m sharing the planet with.

Then of course there is a certain level of empowerment in taking charge. I thought that by using this walking assistant I was admitting defeat. Not consciously of course, but on a deep emotional level. As if I was making a statement to the world that MS has me in some way. What happened was really quite the opposite. The stick has given me power. The power to bring out the best…and the confidence that I can walk farther and faster without kissing the sidewalk.

There is also the reminder I aforementioned. It reminds me that I’m not the same. That I do need to take special considerations. That I need to slow things down and be more concerted in my efforts. And although I only use the stick commuting in and out of my building at NYU it has encouraged many conversations with people about Multiple Sclerosis. People who I’ve worked with for almost 5 years that had no way of knowing.

A common response for so many people is “Oh, you must have a mild case that doesn’t affect you then”. To which I explain, My symptoms are every day, all the time- it’s just that they are invisible. Sometimes I say more, sometimes less…but everytime I feel as though I’m educating one more person about the many faces of this disease. Adding to the list of people they know with MS, hopefully making it easier for the next person they come in contact with.

This walking stick is as so many things. I’m not sure I’ll ever give it up. I think I’m starting to love it.

by

Don’t ever ASSuMe…

So this week Dr. Miller, by way of Jenn Decker (his nurse practitioner) told me that his latest thought is that this dizziness isn’t my MS.

No Way.

That caught me completely off guard, but it is exciting on a number of levels. The fact that it didn’t seem to be affected by the steroid treatment sent my mind in so many directions. Is this ever going to go away? Is this my new normal? I shutter to think.

But if it isn’t my MS, then it can be treated… it isn’t likely that it will be permanent.

But wait a minute….rewind 19 years to Baltimore.

Back in 1989 , my first year with MS, I was in film school living with 4 other girls in a town house off campus. After a few days with a virus I woke up to find my clock spinning. This was followed by a trip to the ER with a waste bucket between my knees. I remember the day vividly. When we got to triage I threw up in their garbage can and proceeded to do so at ever stop I made from there on in. After 17 hours in the ER on an IV, listening to very colorful stories of my neighbors behind the sheets serving as walls, unable to move my head with out losing my cookies- I was given a room. Being sans family in Baltimore left me little desire to go home. No one to take care of me there. My Dad and Linda came from NJ to visit me and my friends from UMBC art dept brought cheer and a mirror so for my three-day stay that I could see people entering the room.

When the doctors determined it wasn’t my MS and gave me a patch behind the ear. I didn’t question it. I used this little circular trans-dermal motion-sickness-aid while in Israel in 1985, in order to tolerate those hairpin turns on the buses. It worked then, as it did in this case.

As MS became less of an enigma to the medical community, I looked back on this experience thinking they didn’t know what they were talking about. Vertigo is now a symptom of MS …of course this bout was MS. To this day I have dealt with a quick turn of the head resulting in nauseas and dizziness…. I just thought it was a part of the me with MS. The part that is inseparable. After almost 20 years of this to have a symptom not actually be MS is mind blowing. I have so many crazy invisible symptoms going on and this fit in perfectly.

So I immediately checked in with my brilliant chiropractor. I hate to even call him that. He never cracks anything. (or I should say very rarely) His knowledge of how the body works, his instinct for areas that need release on a cellular level is beyond words, it’s impossible to describe the work he does. All I know is that Dr. Allan Verter needs to have himself cloned. It’s scary that all of this power to heal exists in only one person.

I’m not the kind of person that rushes to alternative medicine… I’ve been on Copaxone since 1993, and I’m on a number of other medications that clearly work for what the are there for. (that was an awkward sentence!) But the treatment that Dr. Verter provides defies explanation and it is successful. So once I learned that this dizzy head might not be my MS I couldn’t wait to tell him.

And he went to work. And my sense of stability on this planet has improved. And the people rejoiced. (or at least my people rejoiced!)

So now the question is…do I continue to carry this stick? It has served as such an important identifier on my commute. I’m not sure I should give that up.

Tune in next time for this, and a million other topics that will be addressed!