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The Drug Lottery and Related Lessons.

In my last entry I wrote all about my diagnostic year- 1988. It sent me back in a whirlwind of memories — both good and bad — from that time. I’ve found when looking back the bad times, they are empowering. At least from the perspective of time. Surviving anything that is challenging is a shoring up of character. And there were more than a few things fitting that category, that year.

I mentioned the impact of disease modifying drugs- and how that transition from nothing to something was and continues to be a powerful perspective. I think it warrants more blog-coverage.

So let’s rewind, not quite so far as 1988 to 1993. With 5 years of MS under my belt I had experienced a good taste of what my MS meant. Nothing happened in those early years to help me cope with my uncertain future. As much as I looked for a pattern, I found myself with a series of clues that didn’t lend themselves to any conclusion. I had 2-3 accute episodes a year that included a veritable pu pu platter of MS symptoms. (fatigue, difficulty walking, poor stamina, a wide array of unusual sensations, small motor skill limitations,  jumping vision, bladder issues) A set up that would become the classic Amy Gurowitz version of MS.  But finally… all the muttering about developing drugs to treat MS …  the FDA passed one. And with that,  I entered the first ever drug-lottery.

Along side an enormous group of eager (understatement!) MS patients, I crossed my fingers as BetaSeron, the first medication approved by the FDA to specifically treat Multiple Sclerosis was approved. This development sent off great vibrations in the world of MS. Everyone living it clamored to get a portion of the premier Rx to treat the untreatable. So much so, Berlex (now Bayer) couldn’t possibly accommodate the demand with the supply. My understanding at the time was that although the drug was proven effective for Relapsing-Remitting MS, people with every stage of the disease were given prescriptions. And who could blame them? Considering this was the first and only option, and some had been coping for decades with nothing.

So, along with the rest, I drew my number…

…and as I feared it was very high.

I remember it clearly. It was 9-something.  Okay, I remember clearly how I felt when I realized that I would not get the drug for over 10 months!  A little dejected to say the least. I searched for something to feel good about. At least I won’t have to deal with those crazy side effects!

And so, my optimistic-at-all-costs approach kicks in, and gets me motivated. All the energy around this lottery got me thinking… There had to be another way.

So, I went to my neurologist at that time, Dr. Howard Zwibel in Miami, and asked what was on the pipeline. He told me about COP-I (now known as Copaxone) and how they were in the late stages of their drug trial, and looking for patients to add to their portfolio to strengthen their case to the FDA. The immediate obstacle  was that I would need to pay for it myself – to the tune of $2400 a month. (ouch! My film archive salary wasn’t going to cover that!)

So, after much consultation with my family, we decided to chip in and forge ahead.  Doing something felt much better than nothing as I nursed my crestfallen mood resulting from my bad luck in the big lottery.  In spite of the fact that I would be on a drug that I had to pay for, that required me to inject myself daily, and ultimately may not even work- I was excited with potential. 5 years of question marks and uncertainty, it was good to be active for a change.

Next hurdle-  the injections.

I went for my first lesson on how to inject myself with my sister Leslie. She has always been good at this stuff…. me- total wimp! In an emergency that requires quick thinking? -Hope that Leslie is near.  Need a person who can re-frame any challenging scenario? She’s your woman.  So, I chose well in  looking for injection support. And I did need support. But who wouldn’t?  I don’ know anyone who says, “Shots? I don’t mind ’em”

So there we were at Baptist Hospital… raring to learn. (more like scared *@!%less)  At that time the process was very different. The needle was 3/4″ and a thicker gauge. It came in powder form and needed a little saline mixing and transferring before the syringe was ready. All this was hard to do when I was freaking about the final step. But I did it. In my thigh and in all honesty it HURT really badly!

I remember heading home with my huge box of supplies so frightened that I had to do this everyday. Leslie reassured me that I would get used to it. That my pain threshold would rise and that until that happens she would happily be the injector: Working out years of oppression as the younger sister… one shot at a time!

So at this point I wonder, if in fact I should continue on with this story in such detail, sum it up and end it now, or go with a to be continued– Like the last episode of Happy Days before the season ends and Fonzie is planning the jump 10 cars with his motorcycle. Is this that cliff hanger?

Let me know!

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My Diagnosis and Other 20 Year Old Tales

Why is it that I’ve been blogging for more than a year and until now, haven’t discussed my diagnosis? As I struggled to complete this entry I realized it wasn’t a time I care to revisit in such great detail.

Far be it for me to leave anything unsaid!

I bring you to 1988. A time before email, Google and Amazon, before texting and ichatting with people all around the world and selling them your priceless “junk.” Before we had access to watch two Chinese boys lip-syncing the backstreet boys in their dorm or the dancing guy traverse the continents.  It was a time when “vinyl discs” were known as records and sold on main street and the only Bush was the VP running against Michael Dukakis in the election that was my first opportunity for a presidential vote. It was also the year I moved from my teens to my twenty-somethings. Little did I know at the time, it would be a year I would be recounting ever since.

Entering my third year of film school after transferring to Baltimore from the College Park campus of University of Maryland, I had made plans to live with my friend at Johns Hopkins before finding a place for myself in the Baltimore suburbs. The chaos of this change was dimmed by the changes of the 3 years prior. Just back from a teen trip to Israel, I learned that my parents were divorcing. My mom moved out of the house over the next year and ultimately to Florida before I graduated high school. So by 1988 I had made it through two years in college without much in the way of parental guidance. In fact, the only reason I was at University of MD was because my friend sent me an application. Any help with big decisions from my parents had evaporated.

I was in NJ for the weekend visiting a friend when I woke up with half of my body numb and tingly. The feeling divided me in half running right down the middle of my face and the center of my abdomen. It immediately struck me as a brain issue. I had taken psych 101 during that Spring semester and spent a lot of time studying the hemispheres. I couldn’t imagine how sleeping wrong could result it this sort of experience… but I tried to shake it out none-the-less. As the morning progressed the sensation remained, so I put a call in to my GP. I went to see her and she did  a standard exam, finding no obvious cause for this symptom. After some blood-work, she told me to call if there were any changes. I did just that when the tingling got stronger and she met me at the hospital.

So there I was at JFK Medical Center, the hospital where 19 years and 362 days earlier I was born.  During this visit, I was prodded and poked in unfamiliar ways that are now ritual. Because my dad was in Miami at my sister’s high school graduation (she moved down with my mom) the only family in town was my older brother. He visited me and proved that the meal I wasn’t eating was pedestrian-worthy by finishing it himself. (lol) Not what you would expect of hospital cuisine.  It’s funny how 20 years later that point sticks with me.. yet I can’t remember which tests were performed! I guess that’s what stands out for a 19+ year old. Continue reading →

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I’VE HAD IT!

Okay.. I’m the queen of optimism here… Anyone who knows me- knows this fact. Since reports came back from my kindergarten teacher in 1973 it was on record. “Smiles, endless smiles. Amy is so happy, she’s a joy to have in class” Now granted.. this was news to my mom being that my home life was different. Ever since my sister came on the scene my role changed. Only 20 months younger than me, she catapulted me from center stage, and I hadn’t even sung my big number yet. So, my shining persona was not evident in the daily family experience. Imagine that.

Years later that sunny disposition and overall optimism “in-spite-of-it-all” has carried me through so many of life’s dire moments. And its that attitude that keeps me going no matter how hard MS pushes me back.

But I’VE HAD IT!!! (as previously stated!)

Of the myriad of symptoms I invisibly juggle everyday… Foot Drop has been an unwelcome repeat offender. To clarify..  Foot Drop is when your foot does not listen to the message to pick itself up~ so, at the all important moment, say when one is taking a step, the toe portion drops down… igniting a trip-stumble-fall scenario that is very unpredictable and usually humiliating.

Walking through the NYC streets and stumbling on nothing does not do much for your cool, unfazed city image. But since I was labeled a “klutz” long before diagnosis… it was not an unfamiliar feeling. I can only imagine how this disease impacts people who were dancers or athletes. For me, however, it was a couple of notches lower on the less than 0 scale of coordination.

And yes.. I’ve got many amusing/pathetic stories of kissing asphalt in NYC. This was one of my incentives for using a stabilizing stick on my commute. It has saved me from many falls since I added it to my routine. When I get to work (at NYU Film school) I walk the halls sans stick. Not because I’m working on a particular image amongst the students… it’s great to be an adult who is beyond caring about those things… but more because I’m comfortable in that space… and have things to carry- rendering the stick inconvenient.

So.. we are finally narrowing in on the story leading up to this interjection!

It was almost time to leave. A student asked me a question that I did not know the answer to… so I threw caution to the wind and walked 10 feet to someone I was sure knew the answer. On my return trip (as it were),  approaching the staircase that was situated between the start and end point- I did just that. I tripped dramatically. I was as horizontal as one can be without flying (or sleeping) until I righted myself. I was furious!!! The spectacle of the matter didn’t help. There were many around observing me trip over a phantom item.. and as I pulled myself back up I was standing next to a faculty member who was leaving the staircase and made a light-hearted joke. This would normally have been how I would have handled this exhibition, but this time I was pissed! Dammit! I can’t even walk a circle of 20 feet without displaying my brain defect! And for some reason I wouldn’t laugh it off. I was furious. So, I uncontrollably stated: “You know I have MS right!? This happened because of an MS symptom! I have foot drop! So I trip over nothing!” Poor guy. Talk about being caught in crossfire. It was me and my MS and we were yelling it out for everyone to see… and hear. This particular faculty member is a sweet guy… we’ve always had such a lovely “hello-goodbye-have-a-nice-day” sort of relationship. And now, he found himself in the midst of my tirade of frustration and anger and he remained sweet.

So I left for the day with my stick supporting me through the commute home as I grumbled to myself about how I can’t even walk 10 feet without tripping. I was angry and feeling sorry for myself.

I was diagnosed with MS when I was 20. I never had a period of my life where I felt in control of things. Just as I was leaving my tumultuous teens and embarking on a life of my own… taking over the role of “boss of me” from my parents, I had a new boss. One that appeared unexpectedly and told me I couldn’t do the things everyone else was doing. One that has a job plan for me, but refused to allow me to be prepared for it. And once I got used to my new job requirements they changed. Everything becomes more challenging and my ability to meet the requirements are much harder. But in the end… I always matched them.

Days later it feels like a distant happening. Another story to tuck in to my over-flowing-suitcase under my bed. I’m not sure if being pissed really served me. I think I prefer to be strong and humorous. I suppose that makes this ride more tolerable.

And so it evolves.

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a pause

Consumed with many distractions, I wanted to pause and share a poem i wrote when flooded with emotion about having to put my cat Frankie to sleep. Since I started blogging I have found a wonderful coping mechanism, a catharsis in writing. In particular when dealing with loss.  (losing someone twice) Be it a person, a pet or an ability- words have more power than I knew when I began this blog-journey.

So without further adieu, my emotions in words, this week.

Being Frank

Waking, a half conscious journey to morning rituals
Shadows that mark places to avoid are in memory only
The loud greeting while the house sleeps need not be hushed

Greenest eyes pleading for who knows what are closed
An unexpected hole opens wide
For the first time
There is no one sleeping on our floor

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A rut.

This week I’m finding myself in a writing rut. I have so much I would like to capture in words, yet nothing I’m experiencing can be tamed. I’ve written pages of text with some wise observations, however they are stuck between excessive conjunctions, misplaced modifiers, and my overused ellipses…

The dizziness that was once extreme, then moderate and ultimately not too bad– is now present again. I’m not sure which word describes its current state… its somewhere in between modertate and extreme.

When I climb out I will post again. Until then I be swimming with the phrases…

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The MS Tapestry

I recently read a beautiful piece written by an MS blogging friend about her diagnosis. She drew a masterful allegory comparing her diagnosis to her son’s coming of age Tai Kwan Do blackbelt test.

It got me thinking.

Not only about my own diagnosis, but also about the richness of everyone’s unique story.  What a fabric we weave in sharing these stories. I feel like I would like to make this a visual statement. Not unlike the AIDS quilt. Is there a unique way to take these MS stories and weave them together visually, without losing their individual value? Allowing for each story to maintain its integrity yet build something larger.

There has to be a way to do this. I’m going to be thinking about that for a while. And while I’m on the search I’ll think about my diagnosis… and how that works in to this fabric.

Thanks for checking in…

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SoftServe Matters, the non-profit engine behind MS SoftServe.

Two weeks ago I participated in a NonProfit Boot Camp put together by Craigslist Foundation. You know, the people that have given us access to information (fab sales!) in our community. In addition to getting a lovely dining room table, I can thank them for providing a new level of motivation in getting SoftServe Matters up and running. The timing for this was perfect as I just received a call from the IRS that my application for 501c3 (tax exempt) status is nearing completion.

So, let me take a moment to talk about MS SoftServe, its origins and SoftServe Matters the non profit that is dedicated to providing meaningful learning about chronic illness on the Internet.

While getting my Master’s in instructional design in 2006, I realized that the problem I have with learning about my MS is universal, and can not only be resolved, but it can also become an empowering tool for all patients with chronic illnesses using the technology of today.

I, like so many at diagnosis, struggled with learning about MS. The anxiety of not knowing what I would be coping with the next day, month, week or year made it impossible to learn more about this disease. Everywhere I looked I feared,  Will that be me? In 1988 the Internet as we know it was not yet available.  Any effort I made to learn more from the resources that were available back then resulted in paralysis by fear.  As a college junior I struggled to come terms with this unknown in between my studies and filmmaking assignments. Twenty years later my struggle continues as a variation on that theme.

While I was afraid to learn about the diagnosis in 1988, the twenty years of living with MS forced me to revisit that emotion over and over again and I continue to do so to this day.  As I learn to cope with the changes in my disease, scenarios that may include a future with the symptom de jour play themselves out in slideshow form.  I want to be my own best advocate, to learn all there is to know about managing life -not only on a symptom level, but also the disease itself – and all of the scientific advances in treating MS. I want to learn about how to choose medications for the varying symptoms, and cope with their side effects. I want to be the master of the unique disease I have, so I can teach to world around me what I’m experiencing and why its happening. But I continue 20 years after this diagnosis to tread with fear when I need to learn.

The Internet affords us so much access to information, its difficult to remember a time when we didn’t have the answers to things. And while it is a wondrous resource for facts and information (No more social bets of who was that actor? and I think I saw him in the last Woody Allen film …  leading to furious page flipping!) trying to learn about anything that has emotional implications is practically impossible.

Multiple Sclerosis is completely unique for every person. That fact is at times frustrating and at  times reassuring. Yet because there is absolutely no way to predict what is going to happen to you,  (or me, in this case) I am left vulnerable to those possibilities. And that is exactly what is force fed to you when you sign-on to learn something. Every possible consideration is thrust at you, challenging my ability to cope with what I already have on my plate; and making my fears and nightmares more specific.

So, from this ongoing need along side my recent education in instructional design I created an approach that would be the key to harnessing this vast amount of information.  It would allow for every person with MS to log in and establish her/his preferences of the what and how s/he wants to learn about her/his disease. The learners are in complete control from start to finish. Creating a safe space for learning about their version of MS. Through scaffolding, as opposed to lists the user will deliberately choose the specifics of the lesson. And once there, s/he will be able to establish and save how s/he prefers to learn.

I know from my experience that I am a visual learner. If I can see a short animation describing a concept it is much more likely to stick with me. That isn’t the case for everyone though, some people prefer to read it, or download and print it. Maybe s/he want to watch and listen to a medical professional describe the concept, or a peer with MS. This site will provide multiple options of how to get the information you are looking for. It will also provide an opportunity to chose the language level that you prefer.  (Simple, Everyday Scientific) And the site will go beyond a customized MS education. It will be a space where people can interactively learn how to talk about their version and teach people about that unique experience. There will be a place that demystifies the News about MS, and a space entitled Understanding and Communicating with your Doctor. The site will be filled with powerful tools for managing a life education about MS, such as creating an online space that is individualized– a URL for friends and family to sign on to to learn about your exact version of MS. (Forgive me for what was a pronoun nightmare in that last paragraph!)

For a person with MS it will be a safe, reliable place for information and education…one that is customized to meet her/his individualized needs through customization.

SoftServe Matters is the non-profit organization that will fund this and other sites for a variety of chronic illnesses.

Because coping with a chronic illness is a life of learning. And why shouldn’t we have a place that knows us and works to accommodate our needs;  to empower each of us to be our own wise advocate and the educator of all who we come in contact with in life.

It’s a level of control we all deserve when a lack of control is what we are all too familiar with.

I encourage you to share your thoughts here; and thanks for reading!

~Amy

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the in-between

Sometimes I have so much to write about, that I can’t get any one thing to the top of my priority list and I shut down. I studied this when I learned the backstory on how we learn. In scientific terms it is referred to as cognitive load. It is the rate at which you are able to take-in and process information- its your measured cognitive load. So, with that in mind, (so to say) I have cognitive overload! A a time when it would be in my best interest to function at the highest level- the opposite occurs. My hard drive crashes and all systems falter.

So where do i come up after I’ve hit CMND-CNTRL-ESC on my mac. Is there something I can do to keep my mind on task, without going in to the same overload? (This is that opening for Tetris and Word Challenge.)

If only I would allow myself the one paragraph entries. This way my thoughts won’t get deserted in the drafts file, even if they are abbreviated. So what if it isn’t a complete essay or an epic entry that all comments illustrate as my “best ever”. Even the in-between will have significance worthy of a read.

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Deafening Clamor!

This past Saturday I had an incredible experience at BootCamp. Yes, BootCamp. Craigslist Foundation held a Non-Profit Boot Camp at NYU… and what a learning opportunity it was. I got home and immediately began an entry on my blog. Then on Sunday my daughter Madeline had a party for her upcoming 7th birthday. It was at a local bowling alley. For the first time we are taking the birthday party outside of our back yard and what a relief we expected that to be. It didn’t quite work out that way… but a good time was had by most. Then Monday my bowling professional, wii practiced not quite 7 year old was pulled out of horseback riding camp with a fever of 103.5. Cut to Monday night with no sleep holding compresses to my daughter’s head and other less favorable images and sounds that I won’t go in to here. Then Wednesday happened. I was a presenter at Eisai Pharmaceuticals “Lunch and Learn” who really want to know what it is like to live, learn and cope with MS. I did a presentation there and rushed back home to meet with a woman at the MS Society NYC chapter to consult on the curriculum for their annual learning symposium. Three hours later, I came up for air. My train ride in this morning was with my laptop propped on my knees working that instructional design. I miss the silent clammor!

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Silent Clamor

Today is Wednesday, August 13th. As per usual I commuted in to NYC via the train across the street from my house. Every weekday that I’m feeling well plays out roughly the same way. I walk across the street with stick at my side and my far too heavy backpack keeping me grounded. Exchange pleasantries with the co-commuters while we wait. Depending on the train I find my place- today it is a long car behind the engine, 2nd seat on the left. Prop stick against the wall, assume commuter position.

From the outside looking in, that position is a static one, assumed by the quiet masses. For me it is where the action starts. Depending on that day’s distraction -be it the Science Times, the New Yorker, and lately any book by Haruku Murakami- there is an ebb and flow between the read, the thoughts of the moment and the cacophony of the commutation orchestra. All this input is punctuated with the pull of sleep- a not-too-distant memory from a few hours earlier.

The code of silence may surprise the spectator who has never experienced the mass transit commute into a big city. It is a satisfying start to the work day. A collective moment honored by all, and interrupted only by the call for tickets and the staccato of the hole-puncher making its way through the car.

This is the time-in between the quiet clamor of the daily migration, that I, along side hundreds with whom I share the experience, start my monologue for Wednesday, August 13th. Today I feel different. I woke up feeling the dizziness I have felt since December, but as soon as I transitioned from front lawn to platform, I knew this commute wouldn’t be the same. While the details on the outside were identical to yesterday’s, what was happening on a neuronic level was new. Something barely interpretable, but present none-the-less. Just to be sure I put it to the test. I added flourishes to the action walk up, walk down, walk across repeat. I try increasing my speed slightly and adding a rhythmic jump that I haven’t known for some time.

So many take a stairway trip for granted. I’ve watched how effortless it is for most – not a second thought, never even grabbing the handrail. I haven’t had that luxury since I was 20. But today, I added a little skip to may downward trend. Taking a moment to experience that minor change, and relish it later as I write- it’s a nuance that excited me for what I might notice on the way home. Wish me luck.