Ten

Ten

Ten (number)
equivalent to the product of five and two; one more than nine; 10

Ten – number of years, to the date, of being diagnosed with MS

April 15, 2009 – ten years of living with multiple sclerosis

Ten years ago I couldn’t see what or where I would be now.

Ten years ago I walked into a hospital in a small European city to get the results of a lumbar puncture from two weeks prior. Like a movie, I stood outside of the hospital for 15 minutes, knowing that might life would never be the same coming out on the other side. I took a deep breath and in I went. I met with the resident on duty, a name I’m not sure I ever knew, where I was told in a hallway, that the CSF results were 99% conclusive for multiple sclerosis. What’s next? Call the clinic after the holiday. Two weeks later I came home to New York and collapsed on my family and a neurologist I met, once prior, a few months earlier.

Ten years ago, I got MS for my 40th bday, but on the verge of turning 50 (geez!) in a few weeks, I look back and recall my neurologist told me that I would be ok. And that I would likely continue to live my life with mild disease burden. 

Ten years ago, I could never have seen what he told me. Ten years ago my insides were sicker then they had ever been, and yet looking at me, I “looked so well.” I couldn’t hear people, over the buzzing, literally, that I would be ok. That I would be more than ok. 

Some nights I laid awake 3,000 miles away from home, in a foreign country, wishing that I had a terminal illness so that I didn’t have to live the rest of my life in turmoil. It wasn’t that I wanted to die, I just couldn’t envision living the way I was at that time. 

While I am fundamentally the same slightly cracked, mildly scrambled, person I was prior to the MS, what I learned is that life probably wouldn’t have been too different had I not been diagnosed with MS. Meaning, I’ve heard people say that being diagnosed was life altering for them. That they found more meaning then if they hadn’t been diagnosed. 

While I have made friends along the way as a result, and hopefully helped a few as well, I would tie this convoluted “gift” up in a bow, and give it right back to where it came from without thinking twice.

Multiple Sclerosis doesn’t just impact the people who have it. It touches everyone around it. It’s like a super old ivy growing around a building. It can look beautiful, but yet wreak hell on anything it comes in contact with, strangling everything in its path.  

People like to use war analogies for diseases (warrior, battle, fight, etc.). Or I’ve heard so many times over the years, “I could never do what you do.” Or the phrase, “you don’t know how strong you are until you have no choice.” I cry bullshit to all of it. If people get sicker, does that mean they have fought hard enough and it’s their fault? I am not a warrior, I am not special. We all have our “things” to deal with and we do in our own way. 

Ten years later I am still a grand daughter, daughter, sister, cousin, friend, business owner, music lover, foodie, traveller, part-time contrarian, ever reforming type A control-freak workaholic, and questioner of science & medicine. 

Two years ago to the day, I started this blog & social media (Facebook & Twitter). Thanks to everyone who sticks with me and it. 

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Medicine

medicine

Medicine (noun)
a compound or preparation used for the treatment or prevention of disease, especially a drug or drugs taken by mouth

As Grace Slick said so many years ago, “one pill makes you larger, and one pill makes you small…”

As we are all aware, medicines to treat multiple sclerosis are not cheap, nor are they affordable. But many of us, myself included, will agree that they are part of what keeps us moving, literally. Admittedly many of us pay little or nothing out of pocket owing to patient assistance programs, but those programs wouldn’t be needed if the cost wasn’t astronomical out of the gate. And to clarify, I am not talking about new medicines, although that’s helping to drive the problem, I’m talking about medicines that have been on the market for many years, like Avonex.

When I started on treatment in June, 2009, Avonex retailed at $26k per year. Fast forward to 2019, and take a guess, no really, take a guess what a drug approved in 2002 costs, give up? On average, about $87k per year, give or take, so a $60k increase in just 10 years. And each time I receive the insert for my quarterly supply, it goes up, and up, and up, and up. I used to feel bad about having to take a medicine that was so expensive, but considering my contributions to society, and the taxes I pay, it means I continue to contribute to the cost of developing medicines. So round and round we go.

While it’s true that the list price is rarely paid by anyone, having that be the ceiling means that people also pay more out of pocket (co-pay) when all is said and done. And people on Medicare and Medicaid are unable to participate in the patient assistance programs, thanks to president 43. Nor are government agencies able to negotiate the cost of medicines, like every other developed country, which means the United States is subsidizing the cost of research and development for the rest of the world.

Patents also factor into the costs of meds, but explaining that, would quite literally, do your head in. And most recently the skyrocketing cost of insulin and epipens, which leads to rationing (and do you take your insulin or eat?), and subsequently people being sicker, which in turn impacts the cost of their healthcare (and everyone’s).

For this post I will only be looking at people who have insurance. The next image is clear as mud since there are so many hands in the cookie jar, and because if you try to ask the cost of a medicine, you will get 100 different answers and that’s based on how the hands all negotiate the list price. Next to housing, healthcare is the biggest expense most people have, and yet we have no say in negotiating costs, unlike just about every other big expense in our lives. IMG_0613

We have the pharmaceutical company, the insurance company, the pharmacy benefits management (PBM) companies, and the consumer (general public). And some might also include politicians, since they get their share as well (contributions to the committee members referenced below), but in a different way. Though one can argue that campaign contributions also add to the high cost of medicines (see Citizen’s United – the content of the advertising speaks for itself).

Everyone above takes their cut, mind you, while I have issues with insurance companies arbitrarily deciding what medicines people should be allowed to take (a decision that SHOULD be between my doctor and me), the PBMs such as Express-Scripts (Accredo), CVS Caremark, etc. are just plain scourge of the earth. I have been doing battle with them for years. These are two of the largest PBMs thanks to monopolies and insurance companies buying them up. See the complaints for both Express-Scripts and CVS Caremark and these are just from Consumer Affairs. Facebook and Twitter are riddled with 10s of thousands of complaints about both companies.

The argument is that mail order / specialty pharmacies are better suited to taking care of medicines for diseases like MS, and I can tell you that this is just.not.true.! Imagine having to beg a giant corporation to do their job effectively, like something as basic as ordering a refill on an app, and that refill never being transferred to the specialty arm of the pharmacy. And financially, my local pharmacy has told me time and again, that they can, and do, handle specialty medicines with ease. And having that personal connection to someone is way better than talking to a toll-free number, where they couldn’t care less about whether or not your medicine is delivered on time or within proper temperature controls.

So while I will never begrudge a company making a profit, unnecessarily high costs (set by pharmaceutical companies), stop gaps (PBMs), and senior leadership salaries and bonuses, on the backs of people who need these medicines, is downright offensive. On top of that, direct to consumer marketing, only allowed in the United States, and New Zealand, is a $10b a year (U.S.) expenditure. As the saying goes, if it didn’t work, they wouldn’t do it.

Pharmaceutical companies argue that raising the cost of current medicines is what allows them to develop new and innovative treatments. However consider that basic research is typically started at the NIH, and then the pharmaceutical industry runs with it, taxpayers (us) already fund part of the development of medicines.

On Monday, February 25, congress held a public all day session with the top seven pharmaceutical companies. I have worked in the industry for almost 25 years, and even I learned from watching it. Albeit long,  it’s definitely worth it to understand the issues and challenges. And I can also say that all of the colleagues I have encountered over the years, do genuinely want to find cures and help people living with diseases. At issue is having shareholders and developing medicines for people who need them, is, in fact, an ultimate conflict of interest.

Pharmaceutical companies participating in above:
AbbVie
AstraZeneca
Bristol-Myers Squibb
Johnson & Johnson
Merck
Pfizer
Sanofi

“What keeps you up at night?”
None of heads of the companies said – the cost of medicines

Why in the United States do some think that healthcare should be a privilege, as opposed to a birth right? Cost of medicines is a highly complex issue, but does it need to be?

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Rest

Banksy - relax don't quit

Rest (noun)
the refreshing quiet or repose of sleep

The last few weeks I’ve been going non-stop with work (a good problem to have), but last night MS said, whoa Nelly, no can do, shutting ‘er down. So while I got a good night sleep, this morning my body still had other ideas.

At the beginning of this long distance marathon a day like today would make me hate myself. But now, now I know if it takes a few hours of recharging to keep going, no one is calling me to the OR, so I’m ok with it. Please don’t feel bad, because I’m not sick, just temporarily out of order.

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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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Strong

Strong

Strong (adjective)
having the power to move heavy weights or perform other physically demanding tasks
possessing skills and qualities that create a likelihood of success

When I looked up the definition for strong, there were at least seven different variations. When people think of strong they most often think of how much or how little you can lift or “what doesn’t kill you, makes you strong” (I should look like the Incredible Hulk by now – the Mark Ruffalo version). Or “I could never be as strong as you are dealing with MS.” Or “strong is what you are when you don’t have any other choice.” While people think those are compliments, I’m no stronger than anyone else who deals with a chronic (sometimes acute) disease.

For the last week, I was up and down with my, this time of year ick. And for sure I didn’t feel strong. I was full on, 100% pity party, having to remind myself regularly that this is way better than having to deal with a flare-up for three months. BUT when you’re in the throes of non-stop coughing, can’t sleep, can’t get comfortable, can’t get yourself out, can’t clean your apartment, and can’t attend events, and being a day away from dreadlocks because you can’t shower, finding the “can” is not easy.

And while (fingers & toes crossed), I’m not having a flare-up, my immune system working overtime to fight this ick, lends itself to inflammation, which for me is constant tingling. And having to take nighttime cold meds to squash the coughing, means that I’m foggy for most of the next day, and it gives me really weird, fucking dreams, bordering on nightmares. Those with MS know that it takes us longer to recover even from the average cold. While I’m not thoroughly fatigued, I’m still super wiped out, and the nighttime cold medicine doesn’t help the cause.

This last week I also had to forgo my regular exercise routine, which is the first time in many months, and while most say don’t beat yourself up, it’s ok to be kind to yourself when you’re sick, for me even taking a week off can be detrimental to my physical and mental well-being. But tomorrow, bright and early, I will don the work out clothes and drag myself to pilates, which I truly love.

Strong can mean many things, and we each have our own version(s) of strength. You don’t have to lift heavy weights to be strong. But know that whatever your version is, you are indeed strong, powerful, and capable.

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PS – If you don’t know Ady Barkan, please follow him. He is literally using his last breath to fight for what should be a right, rather than a privilege. To me he is both strong & a hero.

Fear

Fear

Fear (noun)
an unpleasant often strong emotion caused by anticipation or awareness of danger

There is so much to fear on a daily basis, it’s a wonder most of us can leave the house on a daily basis.

There are the types of fear that seem to lurk in the background, like dark spaces, spiders, snakes (both do I loathe the latter two!), and other things that go bump in the night.

Then there is the fear of speaking in front of people or going on a stage or singing in front of people. It’s interesting to me that when I speak with people who act or sing regularly about their ability to make themselves so vulnerable, I’m often met with responses that suggest low or lack of self esteem, which seems like such a dichotomy. How can a person willingly make themselves to vulnerable, and yet fear that very act of vulnerability at the same time.

The fear of losing loved ones and close friends, from long drawn out diseases, to sudden deaths, or just old age. The fear of going on without these people in your life.

We are moving into one of my favorite seasons, fall, although winter is my very favorite-est. And with that comes the fear of having a flare-up and living with a progressive, neurological disease can play tricks on your mind. The anxiety can help drive that fear. Different treatments like CBD or anti-depressants/anti-anxieties can help, as can exercising. Fortunately I’ve found a combination that works for me. It doesn’t stop fear from creeping in at highly inconvenient times, it just means that when it does, I have the tools and resources to help my brain realize that it is playing tricks on me.

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Stable

Steady Firmly fixedStable (adjective)
not likely to give way or overturn; firmly fixed
not deteriorating in health after an injury or operation
sane and sensible; not easily update or disturbed.

I call it MRI Monday, which fortunately included results on the spot. and it was all STABLE. As noted above, stable can have many meanings. It can be firmly fixed, like roots that grow into the ground or a cement foundation. Or it can refer to being sane and sensible (whatever that means). But in this case, stable means the multiple sclerosis isn’t progressing, at least clinically on high powered imaging. And because I feel better than I have since before the diagnosis nine years ago, I’d say it’s better than stable.

Interestingly my neuroradiologist was more concerned about degenerative disc disease which has improved as well. And I’m attributing that to the awesome Pilates I’ve been doing since March (stretching & lengthening!).

Though to keep things in perspective, it doesn’t mean without symptoms, but these days those are pretty minimal as well, as long as I keep stress DOWN, and the air conditioning UP.

Stay cool in these deep days of summer!

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