Category: Uncategorized

Year

Year

Year (noun)
the period of about 3651/4 solar days required for one revolution of the earth around the sun

The greatest teacher failure is – Yoda

365 messy opportunities
365 days of uncertainty
365 days of wonder

What will you do with your next 365 days? When people ask me what it’s like to live with multiple sclerosis the first thing that comes to mind is add more uncertainty into a life that is already uncertain. Sometimes it’s mundane, sometimes it fucking sucks, and sometimes opportunities arise that wouldn’t otherwise.

At the beginning of this year it definitely fucking sucked, but 364 uncertain days later, well, it’s not just ok, but it’s pretty amazing. It’s easy to focus on the diddints, as in I didn’t win the lottery, I didn’t lose those 10 or 50lbs, or I didn’t master the art of baking, BUT…

I DID start my own business, I DID travel overseas to see good friends and to new places, I DID spend time with people I love, I DID start this blog and accompanying social media, I DID start a great fitness routine (more after the New Year!), I DID create new memories, and I DO look forward to the next 365 adventurous days to come.

I wish you good health, happiness, prosperity, and loads of DIDs for the New Year.

PS – And I DIDN’T have a flare-up this year. I was just too busy DOING the above DIDs. And that’s a good DIDN’T.

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Sick

Sick

Sick (adjective)
affected by physical or mental illness

Tis the season. In the beginning, back in 2009, after my diagnosis and starting treatment, I got sick. Like normal, regular, sick. It caught me off guard because, well duh, now that I had multiple sclerosis, clearly I was immune to the likes of viruses?! Yeah, no.

Each sniffle, cough, headache, turned into a phone call to my neurologist. He assured me that yes, I can still get run of the mill sick and that it was really just a matter of re-learning my body, and that no I definitely was not going to die from having a cold.

What it did do was make me more in tune with the rhythm of my body as I hadn’t been prior. I paid more attention to the sniffles, headaches, and coughs, whereas in the past I would have just moved on or not even notice. Now I had two autoimmune diseases to manage, while being completely insulted that I could still get run-of-the-mill ill.

Fast-forward eight plus years since my diagnosis, I’ve noticed that I actually get “normal sick” less than before. Said neurologist told me that “they” think there is some protective factor from the medicine I take for the multiple sclerosis, though it’s anecdotal.

Lately I’ve been traveling like a road warrior, which I didn’t think would ever happen again. I didn’t think my body could hold up to this type of work, travel, intensity. And while it’s not perfect, and I’m definitely older than I was when I used to do it, I’m more than holding my own with my business and travel. Sure I have gastroenteritis with a cold as a cherry on top, and I have to watch that the asthma is managed, and desperately hope my currently overactive, fighting these bugs, immune system doesn’t cause an MS flare-up, I can still trust in myself and my body.

Lest you think otherwise, I am so proper sick. From my head to my toes, body ache, tissue mounds on the floor, ordering extra Scott from Amazon…sick. Now excuse me while I go back to the “library” to answer the song of the gastroenteritis minstrels.

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Travel

Travel

Travel (verb)
make a journey, typically of some length or abroad

Lately I’ve been traveling (by air) extensively again, both in the U.S. and abroad, for fun and business. I thought these days were behind me. Being diagnosed with multiple sclerosis I didn’t think I could handle the hours needed to do it. Not only do I do it, but I excel at it once again. I think the exhaustion is more about being older, than having MS.

That said, some tips and tricks how I make air travel easier for me.
1) I slowly pack the day before. This has been true since well before the MS. If I pack too far out, I take too much.
2) I take a car service instead of public transportation. This helps to preserve my energy to deal with the airports and flying, which are both exhausting.
3) I arrive early for domestic & international flights to allow for loads of time to get through security. I have both TSA pre-check & global entry. If you need help, ask for it. If you need a wheelchair, ask for it. There is no shame in preserving your energy.
4) If the lines are long I ask to go to the front for medical reasons. Each airport and security line has their own ideas of what sympathy looks like. I find TSA to be short on it for sure.
5) I ask to pre-board due to medical reasons. While I don’t need help walking, not having to board in a crowd cuts down on anxiety, which also reduces stress levels. Anything I can do to tell keep calm, makes a huge difference to getting to where I need to go and being able to function at 100% when I do.
6) If I’m going to be away for more than a night or two, I take one of my own pillows. Sleeping in a hotel, however nice, is precarious as best. Weird noises, varying mattresses, errant digital lights. Anything I do to help sleep better, keeps the MS symptoms at bay. Plus as a Taurus, I much prefer creature comforts. And if it doesn’t impact anyone else, why not!

It took me a long time to be able to ask for concessions, because karma is the great equalizer. I know many people living with this disease who are much worse off, and I thought that I needed to “do it like everyone else,” but then I realized, it’s just like using air conditioning in December if I need it. The more I stand in long lines, the more tired my legs become, which impacts the rest of my trip.

So in the end, I did what I tell others to do. Be kind to yourself and ask for help. It doesn’t make you weak, it makes you strong.

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Before

Before

Before (adverb)
during the period of time preceding (a particular event, date, or time)

Although some might say at eight years since diagnosis, and nine since the symptoms started, that I haven’t been at this multiple sclerosis thing for that long. BUT I can no longer remember before the MS, or bMS as I like to say.

There is a dividing line from before the diagnosis to after the diagnosis. And it happened sort of like when you stand on the line at Greenwich mean time in England (worth the visit). A literal, dividing line between before and after. The time before I walked into the hospital in Basel and the time after I walked out of the hospital.

Most days I tilt my head and wonder if that “thing” I’m experiencing is from the multiple sclerosis or being in my late 40s. And other days I’m completely fine. A few years back a doctor told me that eventually, as my peers aged, we would all be on the same playing field. Cold comfort when you’re 39 years old. Or when I say to my dad “this is bothering me” and he responds with “welcome to my world.” Well yes, but I’m not 71!

The after feels a bit like experiences from childhood. Do I remember from memory or from pictures? Many befores seem like a lifetime ago.

What are your significant befores and afters? Please leave them in the comments.

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Compare

Compare

Compare (verb)
estimate, measure, or note the similarity or dissimilarity between

I was laying in bed one weekend morning a few weeks ago thinking about how much more I could be doing to grow my business, but then also thinking, how much business I was actually doing each week.

I’ve looked on LinkedIn and read about how people say you must have a business plan, and others who say you don’t if you’re doing what you already know. So as not to keep you holding your breath wondering, I dove in, feet first with little to no fear for the unknown or future. Because when you live with a disease like multiple sclerosis, you spend a lot of time comparing your current life to the one bMS (before MS).

A few weeks prior to this someone I know said I could never do what you’re doing professionally because it’s too uncertain. So now someone else was comparing themselves to me! To which I replied, how do you know that you’re going to have a job tomorrow? The answer, you don’t. So I am willing to bet on myself and not compare where I am currently to previous experiences, good or bad.

As we move about our daily lives both in person and online, it’s natural to make comparisons to others, both every day individuals and famous people. We’re told not to compare ourselves, because you never know the shoes someone else is walking in, but it’s inherent. It’s part of our DNA, to measure ourselves against others. We’re taught it from infants developing like our peers, grades, sports, arts, magazines, movies, TV, etc. How are you doing compared to the other?

And it’s not just about Oprah, Bill & Melinda Gates, or Sonia Sotomayor, we now have people who get their start on YouTube and Instagram. There are cats and dogs (and a baby giraffe) who are more notable than I will ever be, no, truly.  People will say, but don’t look at those things, which is impossible given it’s our way of life right now, and part of mine both personally (this blog and other mediums) and professionally.

I have a voice and a story and this is my way to get it out. Recently, I’ve had little wins where this blog and other social media accounts have been promoted by a very large multiple sclerosis organization totally unprompted. And people have told me they’ve been helped by MY story and MY experience. So, maybe one day, I will be as notable as your favorite dog or cat. But either way it’s ok, because I’m me and don’t need to be compared. 

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Trust

Trust

Trust (noun)
firm belief in the reliability, truth, ability, or strength of someone or something

As an American there is a lot not to trust right now. Trust in (most) of our government to have our best interests at heart is thoroughly in the toilet. It certainly has brought us together in a way I haven’t seen in decades, but it’s still a scary time trying to figure out who to trust.

Being diagnosed with multiple sclerosis I felt as though my body had betrayed me. I didn’t know my body anymore. I didn’t trust my body.

When you receive life altering information like this it turns your world upside down. Some say you can control it, or let it control you. I would argue that it’s not so simple.

Your body feels different every day. It’s hard to trust that it’s going to to be there for you on a daily basis, to support your physical and emotional needs. And you quickly learn that sometimes it doesn’t, which is extremely frustrating.

Trust in yourself is a different kind of trust, as opposed to putting your trust in others. It’s intrinsic, a gut feeling, and that was gone. In place of fear and uncertainty. We’re trained to deal with the uncertainty of life, or we couldn’t walk out of our front door each day. But this kind of news makes the uncertainty more uncertain.

I’m pretty out there, so when I was telling others about my diagnosis I didn’t worry so much about trusting the outcome. Though I often had it make it ok for others after I told them. You could see the change on their faces as the words came out of my mouth. I had to help THEM trust that I would be ok, especially the ones who knew nothing about multiple sclerosis.

There isn’t a day I wake up that I can forget that I have multiple sclerosis. For a split second, I wake up symptom free, think about the day ahead (usually hit the snooze button), and then remember. Remember that I have a neurological disease.

It’s taken me a very long time for that trust in my body. That it will do what I need, when I need it. In the last few years I’ve learned that it will be more than not. And part of learning to trust it again, is making to work it stronger. The stronger I get, the more I can trust it. And the more I don’t wake up each day thinking will this be the day another relapse happens. And I’m trusting that even if it does, that I can come out ok on the other side.

Body

body-shape

Body (noun)
the physical structure of a person or an animal, including the bones, flesh, and organs

For as long as I can remember I’ve had a like/hate relationship with my body. Growing up society norms were dictated by magazines, TV, movies, stores, and peers. And with the advent of the Internet we now have a narcissistic streaming medium in our faces 24/7. When you Google “I hate my body” you come up with 78,400,000 hits in under one minute. Seventy-eight MILLION, four hundred thousand!

In the last few years the body positive movement has taken off. I believe in feeling comfortable in your skin, but overall health is important too. The one that has resonated with me is the Body Image Movement. Taryn Brumfitt is an Australian lady who after competing as a body builder, and working out for months and months, many hours each day, said enough. She set out around the globe with a shoe-string budget to interview women of all looks. Her documentary Embrace is truly a global movement. Every woman, man, teen, child, should watch this movie, it’s that important.

It took me a while to watch the documentary, but one day while on the treadmill, I gave it a go. As the speed and incline increased, so too did the silent tears streaming down my face. As Taryn’s and countless other women’s stories unfolded, I saw some of each of them in me. Her movie is available on Netflix, Amazon, iTunes, amongst others.

When asked if they like their body, 80% of women will answer with a resounding no. And on top of that girls as young as four think they are fat and are already comparing themselves to unrealistic, unattainable, bodies.

Three years ago I started working out with my trainer, now sorta, kinda older brother I never really wanted. When we met I told him if he was going to tell me I couldn’t have chocolate anymore, he could turn around and walk out because I would NEVER be that person. In the nine months that followed I lost 18lbs.

My goal was to build strength and a side effect of that was weight loss. I felt great and looked good. I didn’t really change my diet as much as my sugar cravings went away to be replaced by healthier options. And then I had a bad flare-up resulting in IV steroids and other meds for side effect management. It took a good six months to feel better, and although I exercised on and off I didn’t truly get my groove back until much later. It gets more and more difficult to emotionally bounce back from flare-ups each time.

Fast forward to February of this year and I was on vacation and told my body, “it’s time to get going again.” I’ve been working out almost every day since. And whether it’s being a few years older or the Zoloft I started taking in December, the weight isn’t coming off the way it did a few years ago. I’m not eating anymore than before, but I think the Zoloft might have halted my metabolism, although it’s afforded me the ability to work out in the first place, amongst many other things that I have accomplished this year.

I’m not just casually strolling on the treadmill. I’m doing full on drenching sweat equity exercising between cardio and free weights. And I’m also well into boxing and I LOVE it! I LOVE boxing! Sparring with gloves and mitts is one of the best workouts I’ve ever had. It combines cardio and strength training and I get to hit things without getting hit back, yet!

While losing weight is a goal, I am learning to be kind to myself. Recognizing that my body has held up to surgeries, procedures, full out blissful dancing at concerts, skiing, car accidents, and two autoimmune diseases, and it still keeps going. That demands a modicum of respect for my body. Today I am strong, confident, and happy.

Dove body image campaign 2004

Treatment

 

 

Treatment planTreatment (noun)
a session of medical care or the administration of a dose of medicine

Today is the eighth anniversary of starting treatment for multiple sclerosis. My math skills are fuzzy at best, but if you figure 52 injections a year times eight years, that’s 416 injections, give or take based on illness, birthdays, etc. But for the most part, weekly injections, for eight years.

At the time of my diagnosis there were only injectables or infusions, not the oral meds there are today. One of the things I’ve learned both professionally and personally, often times knowing what you don’t want is just as, if not more important than, knowing what you do want.

Given what I do for a living, I was able to review the clinical trial and usage data and whittle my list of treatment options down to what I was willing to do. Although my body was in turmoil at that point, I knew I wasn’t willing to inject more than once a week. Inject, it’s an odd concept. I also knew I couldn’t do nothing, or only treat holistically as some recommended. That.was.not.an.option. Complementary, definitely, alternative, no way.

For most people the notion of doing harm to yourself isn’t ingrained. Having to do something as violent as an intramuscular injection, that causes flu-like symptoms, even once a week, seemed so violent to me. I could easily do it to someone else, just like I loved watching brain and heart surgery, but to myself? Hell.no.

Once I decided on a course of action, I ran it by my neurologist here in the U.S. before setting the wheels in motion in Basel. We hadn’t anticipated a delay in starting treatment, which I’d mentally prepared myself for, but another week more separated the start date from what was originally planned. I didn’t fully grasp the whole long distance marathon thing at that point, given I never endeavored to actually run a marathon.

The onset happened end of March and diagnosis middle of April, by the beginning of June 2009 my body was so sick, that starting on treatment was not only a way for the physical healing to begin, but a way to take “control” over a life that felt very much out-of-control. Starting treatment was also a step in the life is unpredictable direction. One of the worst diseases a type A control freak could get IMO. I was incredibly scared of what was next.

When the decisions were made and drug ordered, J followed by N came over to be with me. Although it was one of the worst times in my life, looking back it also showed me that I can ALWAYS come out on the other side and be ok. A few more bumps, bruises, and warts, but ok just the same.

June 5, 2009 was 1/4 of the injection (you increase the dose over four weeks until the full dose). We practiced on an orange and these little pin cushion type contraptions. In case you’re wondering, none of them ACTUALLY mirror that of injecting yourself. Even hospitals in Europe don’t have the same level of aircon that we have in the U.S. and sitting in the little exam room, learning my new skill, and then having to execute, left me light-headed and near passing out. The first injection was administered by the nurse. We would try again the following week. I needed a STIFF drink.

A HUGE shout out to nurses, because the nurse I worked with, A, at the University Hospital of Basel’s neurology clinic, was beyond amazing. She took one of the worst times in my life and made it as tolerable as it possibly could be under the circumstances. I was 4,000 miles away from home, in a healthcare system vastly different from ours. I will be forever grateful to her.

When I moved home to NYC, she was one of the last stops I made to say good-bye. And when I returned to Basel last year for vacation, she was one of the first stops I made. Going back to where I was diagnosed was bitter sweet, but seeing her was a happy occasion. When you live in an area with a large expat population, your patients come and go. She told me that I’m one of the few that has kept in touch. I couldn’t imagine not.

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Diagnosis

Diagnosis

Diagnosis (noun)
the identification of the nature of an illness or other problem by examination of the symptoms

Two weeks after my time in the hospital and being on all kinds of medicines (oral steroid taper, sleeping pills, stomach pills, you name it pills) I was told to head over to get the “official” diagnosis. I had a lumbar puncture that required about two weeks to culture and confirm what the doctors already suspected.

I spent those two weeks in between “knowing,” knowing that my life was drastically about to change. But I was also so sick at this point that I could only focus hour to hour, which sort of kept me from “going there” as much as possible.

Standing outside of the hospital, it was like something out of a movie. It was a gorgeous spring day in Basel. The birds were chirping, kids were on their way home from school for lunch (yes you read that right), people were running errands, and heading to or from work. The world around me was moving, yet I felt like I was standing in cement and couldn’t move.

I stood outside of the building for a good 15 minutes before mustering up the energy to walk thru the doors, knowing that my life would change when I did. A friend offered to go with me, but I felt like it was something I needed to do on my own. Maybe taking back a little control in a time that was so very much out of control (I HIGHLY recommend taking someone with you to something like this. HIGHLY!).

I was told to find the resident on duty, which in hindsight seemed quite odd, as usually you would meet with a specialist in private. I approached the nurses station hoping that someone spoke English so I didn’t need to go through my usual repertoire of nursery school German.

The resident on duty came to get me a few minutes later and we sat in some chairs by the elevator. I can’t recall whether or not she introduced herself, I just remember watching people going on and off the elevators. And I kept thinking, how weird is it that we’re doing this here and not in an office. Out of the corner of my ear I catch her saying “we’re 99% sure that it’s multiple sclerosis.” I think she might have referenced something about following up with the neurology clinic, meds, and a few other things, but honestly I have very little memory of the whole thing. I guess that’s the way our brain protects us from bad things.

As I was walking to the elevators I watched people getting on and off of a few minutes earlier, I was numb. I had no idea what would happen now. As I stepped back outside into the beautiful spring day, I laughed about what and how the previous conversation had unfolded. It occurred to me that it was April 15 (tax day in the U.S.). And then, in the middle of a street from the 1100s, I called home to New York and cried.

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Onset

onset

Onset (noun)
the beginning of something, especially something unpleasant

It was the summer of 2008. I had just turned 39 and was in the south of France on vacation (living in Switzerland) with a friend. I’d been working dozens of hours a week and desperately needed a holiday. Unfortunately southern Europe was experiencing the worst heat wave they’d had in over a decade. It was 100 degrees which made it hard to do anything outdoors. We hid in shops, movie theatres, and cafes.

We were staying at a lovely winery and while we did taste some of the local fare, by no means were we walking around squiffy. One night I went to bed fine, and the next day I woke up with a numb butt. I remember asking my friend if that had ever happened to her, it had not.

That started my odyssey for a diagnosis. Flash back to a few years earlier and I did crisis work for a multiple sclerosis medicine that was removed from the market and re-released after proper precautions were put into place. In the deep recesses of my mind, I knew something was wrong aside from the everyday aches and pains we experience.

The next months would come with experiencing weakness in both legs, more numbness, and a lot of fatigue. Fatigue so bad that after sitting in a movie for two hours, I would walk a dozen steps and need to sit down on a bench.

I saw my GP, chiropractor, and acupuncturist. I knew that the weakness in both legs at the same time wasn’t sciatica since I have experience with that. Your sciatic nerve is on both sides and not connected. So it’s rare that would you have it bilaterally.

My GP did all kinds of blood work to rule out potential diagnosis, which is still currently the way you also rule IN the diagnosis of MS, including lumbar puncture. Tests for Lupus, lyme disease, syphilis (latent disease can cause neurological symptoms), and a brain tumor (more on this later).

The GP finally referred me to a general neurologist who did some basic motor skills tests and said that I was fine. In the U.S. I would have pushed for more test, and they likely would have at least done a brain MRI, though it may not have shown anything at that point.

In December I had an eye issue where my eyes had trouble focusing distance. No problem seeing up close, just distance. I saw an optometrist (no issue with my prescription) and referred to the eye clinic at the University Hospital. I spent NINE hours at the eye clinic one Saturday. It was like something out of the 1600s, literally. A few days later I met with the attending physician who said I likely had strabismus. Ok, so while my dad had it as a child, I’d just had an eye exam for my contact lenses a few months prior. So NO, it wasn’t strabismus, but rather like when you get a weird rash and the doctor calls it “contact dermatitis” because they have no idea what it really is.

I went back to the general neurologist who now thought it would be good to get a brain scan. Upon receipt of those images, his next idea was to do a lumbar puncture. Playing a doctor during the day, I knew there had to be something in between a brain scan and a sticking a HUGE needle into my back.

Between the results of the brain scan and the eye issue, this was sufficiently enough to freak me out. I was going home in a few days to have knee surgery (a story for another time). So I put my dad on the mission to get me into see a neurologist back home that could help me sort the issues. Two phone calls and 20 minutes later I had an appointment with one of the top neurologists in the U.S. who I still see to this day. I call it mobilizing the Jewish healthcare mafia. We ALWAYS have a doctor to recommend.

Two days later (NYC) I was in the neurologist’s office, images in hand, and parents for support. He reviewed the images and said he saw a few more tiny brain lesions, but nothing that would give him cause for concern. He did some motor skills tests and since I was asymptomatic at that point, he didn’t consider it MS. Phew! Dodged a virtual bullet. He gave me his card and said call his mobile any time and we were on his way.

Three months went by and all was fine. Then the last week of March I couldn’t get my feet warm at all. Warm water, double socks, heating pad. My feet were constantly cold. And over the course of the week I went numb from my feet up over my stomach. Not paralyzed, but numb. I could still walk and no one was on the wiser.

I finally called my GP and although he felt it would subside it was probably time to go to the ER. I took a shower, packed some clothes, and hopped on the tram to the hospital. In hindsight I probably should have waited to text my dad because it was 10a where I was and 4a here in NYC.

They took me back into a room and I immediately called the neurologist I’d seen in NY a few months earlier. It was really important for me to have someone back home in the healthcare system who a) knew where I was and b) could be connected into the treating physician. Turns out I was at the hospital where the top MS institute in Europe is located.

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