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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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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