Anniversary

1 Year

Anniversary (noun)
the annual recurrence of a date marking a notable event

April 15 is an anniversary and birthday. It’s been nine years since my multiple sclerosis diagnosis, and a year since this blog was launched.

Nine years since diagnosis and that means almost TEN years since symptom onset. Some days seems like it was a lifetime ago and others, just yesterday.

I was talking to someone a few days ago and I realized it’s hard to even remember a time before MS, before the tingling, before the numbness, before the fear. BUT because there are so many more good days now, those too often fade into a blurry haze of the past.

Last year someone said to me “you just don’t have time for a flare-up this year” and I proceeded to walk around with that in my head EVERY day. And I didn’t have a flare-up. Now I’m not a big woo person, but I guess sometimes the power of suggestion is very powerful. What also REALLY helped was our cold, long winter. It made me EXTREMELY happy and healthy. Ideally I would love to never have spring and summer and live somewhere that it’s cold or cool all year round. And then I remember I’m 110% a NY girl.

I want to thank family, friends, and strangers who support me and have embraced this blog. I love seeing where the readers come from, near and far. I hope that one day in my lifetime this blog won’t be needed, but until it is, thank you, thank you, thank you for looking.

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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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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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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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Insurance

healthinsurance1

Insurance (noun)
the act, system, or business of insuring property,life, one’s person, etc., against loss or harm arising in specified contingencies, as fire,accident, death, disablement, or the like, inconsideration of a payment proportionate to the risk involved JUST IN CASE

In the U.S. health insurance is the largest expense we incur next to putting a roof over our heads. I was one of the first to use the Affordable Care Act, and while it definitely needs to evolve, you can go online and read thousands of first-hand stories about people whose lives were saved because they hadn’t had insurance in years and were finally able to see a doctor. We are the only “civilized” country in the world that doesn’t consider access to affordable and good healthcare, a right, rather than a privilege. As someone very wise once said in a group discussion, “I never want to be that person.”

As I’m typing this congress just voted, once again, to gut the Affordable Care Act, in place of a plan that would leave approximately 95% of the country screwed. You exempted yourselves from participating in the same healthcare the rest of us utilize. I wonder why?

Fingers crossed we have enough people in the senate with their heads screwed on properly so that this doesn’t move forward. And if for some reason if they’re on the wrong side of this decision, I will personally be contacting the ACLU and will be the first to sign-up for the class action lawsuit.

So I humbly say, to the 217 congress “people” who voted for this because you’re putting your job over human beings, go fuck yourself.

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