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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Organize

organize

Organize (verb)
to form as or into a whole consisting of interdependent or coordinated parts, especially for united action

If there’s one thing that most people know about me, it’s that I enjoy being organized and I really don’t like clutter. Please don’t even get me started about how I feel when I see someone’s phone has a zillion unchecked emails, texts, or messages! I’ve been sought after both professionally and personally for my organizational skills. Now I’m not quite Felix from The Odd Couple, but I suppose run a close second.

This started long before the MS; however, is probably more important now than ever. Being organized keeps me from (mostly) forgetting or losing things and helps with peace and calm in my home. “A place for everything and everything in its place.” [Ben Franklin]

One of the areas that it’s important to be organized is visits to your healthcare providers. People have often complained to me about one issue or another with their doctors and sometimes I respond and ask how they prepared for the visit. Crickets.

In order to get the most out of my healthcare provider (HCP) visits and form a partnership in my care, I created a template document that I fill out, and take with me, to each office visit.

For me the most important part is preparing in advance, including the reason for the visit and questions. This gives you a chance to organize your thoughts and maximize your visit.

The office visit sheet can be used as a reference and to take notes for review later.  This information can either be maintained electronically or in a binder, whichever works for you. When you live with a chronic or acute disease or disorder, it’s extremely important to be organized and have all of your files at your fingertips (test results, CDs of images, etc.).
Of note: you own your medical records! 

Format as follows and link to document [HCP office visit template]

Name complete date of birth
Office visit date

Issues for discussion
bullet points or numbers

Medicines
name, dose, administration, frequency, length of time taking
bullet points or numbers

Vitamins
name, dose, administration, frequency, length of time taking
bullet points or numbers

For more extensive record keeping you can also include family history of illnesses if known.

Keep this information on your phone for ease of access re: emergencies. Bring two copies to the visit, one for you and the other for your HCP.

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Stigma

Stigma concept.

Stigma (noun)
Medicine/Medical – a mental or physical mark that is characteristic of a defect or disease

I’ve been thinking about stigma through most of my career in healthcare communications. Having worked across just about every disease and disorder category you can think of, one of the things we’re often tasked with doing is to help “dispel” stigma around living with diseases. What I’ve learned during the 20 years in this area is that the only people who can truly smash a stigma on its head is someone living with that disease or disorder.

Now herein lies one of the problems with trying to do away with stigma, you have to talk about it publicly. It needs a face. People need to know that stigma is their partner, child, brother, sister, cousin, best friend. Whether it’s with close family and friends or on a broader platform. And in the U.S. at least, if you come out on that broader platform you potentially put your career in jeopardy. I deal with stigma every day whether someone knows I have MS or not. Stigma is all around us. In the media, online, in conversations. Our society favors the able bodied, fit, person.

I’ve seen people in wheelchairs talked over as if the person doing the talking automatically assumes said person in the wheelchair has brain damage and couldn’t possibly understand them. Or better, they shout at them. Now I’m sure I’ve been guilty of this somewhere in my life, but being diagnosed with a neurological disease magnifies those societal blips.

I have a unique story. If anyone has heard the actual way I received confirmation of my diagnosis, they know. It was funny in the moment, and it’s funny now. Combining my experience with living with MS and working in healthcare, I have attained the necessary skills to be able to help people who come after me. BUT I haven’t been able to be nearly as open as I would like due to the fear of said story-telling having a negative impact on me professionally.

Clearly my brain works, no really, it does. And in the past I have gladly accepted that even when I’ve gone through the worst of my flare-ups I can handle doing more professionally and personally then someone without MS. That said, even working in healthcare I couldn’t come out to my managers. There’s that silly stigma again. The idea that I would be looked at as less than if I made a mistake. And most times if I do make a mistake it has absolutely nothing to do with the MS. And if it does, it’s because I’ve worked too many hours and am incredibly fatigued. Under those circumstances everyone makes mistakes.

Another area of stigma surrounds mental health. For reasons unbeknownst to me we don’t treat emotional well-being as importantly as physical. And more often that not, issues with mental health are in fact physical. I don’t know too many people who would ignore having diabetes or cancer. So why do we ignore our mental health? Stigma!

People close to me know I am a total Britophile and eagerly watched Will and Kate get married, awaited both babies with baited breath and have now watched Harry come into this own. Over the last 24 hours he has given interviews detailing that he needed to seek therapy for depression. Remember when he was caught naked in Vegas? Or coming out of clubs in the wee hours? He never fully dealt with the death of his mum and his brother lovingly told him he needed help. When someone of his visibility comes out, especially in the English culture of keep calm carry on, many others feel they can as well.

One of the symptoms of MS is depression. And along with all of the meds to treat the disease and symptoms comes depression. And then you have a flare-up and you’re depressed about that! And then you’re depressed coming off of all of the meds. Screw serotonin! The depression I’d always experienced was either situational or related to being on treatment and follow-up for a flare-up. Until the end of November.

I came home from a grueling day of work and was just spiraling. I stood in my living room feeling as though I needed to head across town to the emergency room where I used to work. I could not stop ruminating. Fortunately a good friend, long distance, over instant message talked me through it. Given this was the first experience I had like this not related directly to meds, I knew medical intervention was a must. This was a Thursday night and Friday I had an appointment with my neurologist for the following Monday. A few days later I started on Zoloft. Hey stigma, how you doin’? Now how can something be a stigma when more than 15 million American adults are living with it?

Those first weeks the nausea was, well,  nauseating. One Saturday night after being out I was wandering the streets at midnight looking for Emetrol for the nausea.

I kept wondering when it was going to “kick in” harkening back to college days. Another friend assured me that I wouldn’t be turning purple or growing a unicorn horn, but that I would “just know.” Part of my fear of new meds is side effects. I would wreck any clinical trial I tried to participate in because I’m the person who gets the side effects. I get side effects no doctor has ever seen before. I’m that person.

Probably about a month into taking it, I started to feel happy. And I mean nauseatingly happy. Like the kind of happy my friends and I would make fun of. Full disclosure, I also started working out every day coinciding with taking the medicine. Fast forward several months and while yes, some say it’s a magic pill (I don’t disagree), but I was also ready for a change. And honestly, it feels GOOD to wake up happy each day. It’s allowed me to tackle something professionally I’ve wanted to do for years (saving that for another post). It’s afforded me the opportunity to start this blog and has cleared my head of “you’re not good enough” and imposter syndrome and most importantly not spending my days hating myself.

I’d like to think this is my little piece of helping to end stigma.

Début

Beginning

Multiple Sclerosis (noun)
Multiple sclerosis (MS) is a chronic progressive disease of the central nervous system characterized by loss of some of the myelin sheath surrounding certain nerve fibers and resulting in speech and visual disorders, tremor, muscular incoordination, partial paralysis, etc.

The most intriguing part of the above description, for me, is the “etc.” Etc are the moments we live in during our day-to-day. The etc can include buzzing (paresthesia) that resembles a jack hammer, fatigue so crushing you wake up only needing to go back to sleep, numbness from your head to your toes, loss of vision (optic neuritis), issues with bladder and bowel, etc. On the bad days, the etc can leave you wanting to tweeze the hair on your head one strand at a time. The honest people admit it just sucks sometimes.

Currently there are four classified types of MS:
clinically isolated syndrome
relapsing remitting
primary progressive
secondary progressive

I live with relapsing, remitting, which means I can have an exacerbation and then go back to having little to no symptoms. There are also pseudo-exacerbations like how anything above 70 degrees sends me running for cover, but as soon as I cool down I’m ok.

People who live with these types of diseases and disorders can never forget. I don’t wake up in the morning, go through my day and get back into bed and think, “oh right I have MS.” That doesn’t happen. Even on the good days, you always remember you have MS.

For the first year I was quite ill and mistakenly thought that once I felt better I could project manage the disease and move on with life. I grossly underestimated the impact this disease would have on me both physically and emotionally. The irony? When we would sit around as teens talking about how we would want to die when we were old, my biggest fear was getting stuck in a body that didn’t work with a brain that did. Joke’s on me! But at least I do have a brain (confirmed by many, MANY MRIs).

While no one knows what the future holds, a disease like MS puts a bit more uncertainty in our already uncertain future. Did you know that humans are the only species who know they are going to die one day?

Today is the 8th anniversary of my diagnosis. While some milestones can easily go by without a thought, given it’s tax day, it’s doubly hard to forget.

I hope you will join me on this journey as I share stories, health information (of all kinds, not just MS), real facts, my life in faux pas, and just random ramblings.