Year

Year

 

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

Whenever I think about the length of a calendar year, I can’t help but think of Rent. I remember seeing the Broadway production and thinking anything was possible. I used to think that about NYE, and inevitably would be let down by the seemingly over the top expectations on what the shift from one year to the next should bring. After all, Tuesday still comes after Monday.

Now I think of a year as any 365 days, wherein any morning you wake up can be the start of something new, it doesn’t need to wait until January 1. And I might argue that it’s probably easier to sneak new things under the radar any old day of the week.

I’m learning how not to dwell in the past and find myself getting annoyed with those “best” and “worst” lists or even more horrid, New Year’s resolutions. Every 365 days will have all of these things because life can be wonderful and messy all at the same time, but I guess that’s what keeps it interesting.

2018 was wonderful for me personally, professionally, and health-wise. I’m moving out of another year without having an MS flare-up because I just don’t have time for it. And while I’m shatteringly exhausted from politics and bad, self-serving people, I still believe that as a nation those are the sum of our parts and not the whole, and we will persevere.

Happy, healthy, prosperous to all and thanks for reading.

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Walk

Reservoir

Walk (verb)
to move along on foot

The above picture is of my happy place in Central Park. One of my favorite things to do in the cold weather is to walk the reservoir (the colder the temps, the better), named after Jacqueline (Kennedy) Onassis who lived nearby on the Upper East Side.

I’ve never been quite sure why it’s my happy place. Nothing in particular ever took place there, other than I think it’s amazing to have this little body of water that ducks love to hang in right in the middle of the city. And each time I approach it from the west side, I just feel happy.

It’s not lost on me that 10.5 years into the onset of the MS symptoms, walking outside is one of my favorite activities. I can walk for blocks and blocks in the city and never get bored of the sights. In December of 2008, the symptoms that I had experienced a few months prior, were a distant memory. And as shed tears of joy the neurologist (who has since become mine) that I saw once that month told me that he didn’t consider it first onset, and that I didn’t have MS. If memory serves, I didn’t walk, but rather skipped, out of his office that day.

Three months later, all of that would change, and not only did the symptoms come back, but other new ones joined them and they were fierce this time. Tingling and numbness from my feet over my stomach. But, being it’s the “but you look so good disease,” no one could tell by looking at me, because I had no trouble walking. Two weeks later in April of 2009 I would be officially diagnosed. And yet I still walked out of the hospital after receiving the test results. A little more banged up, but walking just the same.

In those early days I lived in constant fear of losing mobility and vision (neither has ever happened so far – or at least the times I bump a toe or shin on my bed frame seems pretty normal for my age) since I’d seen so many who had come before me go through it. Why would I be different?

It’s only been in the last few years of not having a flare-up, where I’ve started to not think so much about those two issues. I’m trying to keep it that way, but when you’re told that a+b=c, and you know c, but don’t know a or b, how does that happen? Is it the medicine I’ve been taking for almost 10 years, working from home, anti-depressant, cannabis (mostly CBD), exercising, music, family, friends? I guess the answer is yes?! While it’s easy(er) to feel positive about walking into the future when you feel well, that’s just what I intend to do.

Happy, healthy, New Year to all!

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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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