Tag: health

Body

Body (noun)
the main part of a plant or animal body especially as distinguished from limbs and head

I haven’t written since November 2021, mainly because I just haven’t felt creative. Between the pandemic, politics, needing to actually work, and just the world feeling like a dumpster fire in general, has left my heart feeling broken. I do know that I’m safe and privileged. And I want this for everyone.

If you search “body’ on in your browser of choice, what comes up is thoroughly disturbing.

I’ve hated my own body for as long as I can remember, on the one hand. On the other hand, I look back at pictures of myself from 20 and 30 years ago and I wonder what why I felt the way I did because it was never nearly as bad as I thought. But society continues to tell us if you don’t look like a model, you aren’t worthy.

And then when I think about what my body has carried me through over 53 years and it makes me feel strong.
– lifelong illness starting from four years old
– physical abuse at the hands of someone who should have protected me
– appendix removed, two knee surgeries, two abortions
– being diagnosed with multiple sclerosis
– menopause

Alternatively
– standing up for injustice
– hugging people I love
– skiing, hiking, riding bikes, yoga, pilates, skating
– starting my own business
– traveling the world
– concerts
– exploring a glacier
– living overseas 4,000 miles away from home
– lost track how many times I’ve moved (some good, some not)
– taking care of family, friends, and strangers
– giving back to the communities I live in

Community

community

Community (noun)
the people of a district or country considered collectively, especially in the context of social values and responsibilities; society

I live in NYC, formerly known as the epicenter of COVID19 in the United States, though other states look like they might overtake New York. Whether it’s because they didn’t believe it or have poor leaders, either way the tsunami is firmly entrenched in Arizona, Florida, and Texas, among other places.

And I’m writing about community, because as someone living with multiple sclerosis, I’ve watched my online friends across the U.S. and UK go from panicking about the impact of COVID19 on them and their loved ones, to sarcasm (we stay home a lot so this is nothing new), to anger (why couldn’t companies make these adjustments to employ people with disabilities), and everything in between.

For me, the MS is actually the least of the things I worry about. I have allergy-induced asthma, so if I avoid allergens, I’m largely fine. But I know that if I catch COVID19, or any other severe respiratory illness, all bets are off and I might as well engage the old swan dive, since I never want to be hooked up to a ventilator.

Taking all of the above into account, I just can’t get past why people think face coverings are political. If you knew that a face covering could potentially keep you from getting cancer (and in some professional industries this is actually true) or diabetes, or a host of other life threatening diseases, wouldn’t you wear one? We knew condoms largely reduced cases of HIV/AIDs if you wear them correctly, and that’s considered an “invisible” disease. Though the death is horrid, so not sure how invisible it really is in the end. COVID19 is no different.

I wear a face covering while I’m outside and can’t distance. And in NYC distancing when outside, is nearly impossible. The only time I pull my mask down outside is if I am truly on a street by myself. And as soon I have a glimmer of another human being, I put it back up, and OVER my nose. Not on my chin, not over my eyes, covering my nose and mouth. Not covering your mouth and nose is like wearing a “condom on your balls” it does absolutely no good. (credit for this goes to a guy friend that said it quite matter of factly recently)

My biggest MS symptom is heat intolerance. And I don’t mean, “oy it’s hot out.” I mean over 80 with no humidity and over 70 with it, my brain starts to go pear shaped. So I don’t spend much time outdoors in the hot months, and now wearing a mask means I’m inside even more. BUT I still wear one when I go out. If I need to take it off owing to the heat, I will steel myself on a side street and make sure no one else is around.

I say all of this because I live in a community. I may not know any of the people outside of my immediate community in my building, but NYC is absolutely a community. There aren’t many other places in the world that live in such close proximity, and yet we seem to be able to manage it because (historically) we alter our behavior for the times.

Today I went for a long walk and stopped to pick up groceries and I saw people in line either without any face covering at all or standing on top of one another with them around their chin or not covering their nose. Covering your face when it’s hot sucks, I agree, but think about if you or a loved one has ever had surgery. Would you want the doctor, nurse, and other OR staff not wearing a mask or wearing it around their chin?

I wear a face covering when I’m out, regardless of the activity, because I am part of a community, and for the foreseeable future, it’s the right thing to do. And if you’re not, and there isn’t a REALLY good reason for it, you’re not a good member of the community.

Some images below that can be used on social media posts.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

Decade

shutterstock_1502928137

Decade (noun)
a period of 10 years

My gram once told me that I was the least sentimental person she’d ever met because I was throwing out an envelope that a card came in. In reality I am a very sentimental person, but once thing I’ve never really done is looked back. Is there a difference between second guessing decisions / choices and looking back longly / wistfully? Yes.

For me this decade brought illness and pain I couldn’t have dreamt up. It brought the things that everyone goes through in 10 years, but what it gave was much more. It gave me improved health, spending more time with family and close friends, a new path professionally, and more ability to give back to others.

So while it’s a new decade for everyone, and for me personally (turning 50), Jan 1 is no different from any other new day and the ability to experience life and opportunities to help others.

I know the troubles the planet is going through seems insurmountable right now, but never underestimate the ability of one person or a small group of people, to change the world.

Wishing you a happy, healthy, prosperous, and peaceful new year!

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

Change

Change

Change (verb)
make or become different

Heraclitus, a Greek philosopher, has been quoted as saying “change is the only constant in life.”

Humans are creatures of habit. Most of us like the status quo, not rocking the boat, and the “idea” of a linear path. In reality, most of us experience the chaos and utter mess that life is, but in that chaos we can often find beauty.

chaos

The last couple of weeks has started a process of yet another change in my life. Not sure if it’s the whole with age comes wisdom thing, since the older I get the more I realize I don’t actually know. Or if the noises in my head have gotten quieter over the years. Or if being diagnosed with the MS 10 years ago, and what I’ve been through since has shown me I can get through nearly anything, but I’m good.

But now that I’m over the hump of “holy fuck,” which genuinely always happens. Like when I made the decision to move to D.C. years ago and had to postpone it by two months because I was having daily panic attacks. But once I make a decision it’s onward and and upward. So now, I am rather looking forward to the change.

When I started this blog several years ago, I used to jot down lists of words / topics to write about thinking that’s the way it “had” to be done, but now they just come to me, and I don’t actually write them until they are literally bursting out and I MUST get it down.

This evening after seeing Marriage Story (Noah Baumbach in all his glory), one of my favorite Lynyrd Skynyrd songs came on, you know, the one that everyone screams at OTHER concerts “ironically.” > Freebird > In it they sing about change and being free as a bird, although about changing relationships, and likely a love partner, being “free as a bird,” can be about any change in life.

“This bird you cannot change…I must be traveling on now…cause there’s too many places I’ve got to see.”

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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. 

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

 

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?

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

 

 

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

 

Life

life

Life (noun)
a principle or force that is considered to underlie the distinctive quality of animate beings

Each person’s life is different, and how each person approaches life is different. What we all do have in common is that one day we are all going to die. They say the only things that are guaranteed in life is death and taxes, but let’s face it, even taxes aren’t guaranteed in this day and age, just ask the person masquerading as our president.

I think what we also have in common is that at any given moment, life can bring you to your knees, further down that you ever thought you could go. And in the next moment, you see a sunset or a flower, and it can bring you to the highest high.

For me, MS was like that the first few years. Fortunately the last two have been quite benign. And while most days I don’t hit those soul crushing lows, the what if does stick with me buried deep. What if I wake up and my feet are numb and it lasts for months. And then I come back to, but what if it doesn’t? I’m glad we’ve been in what if it doesn’t territory for a long time.

The life moments of peace my body experiences now, where it’s almost as if I don’t have MS, are more, than less, these days. Sometimes I look up after hours of working and think, “wow I haven’t had symptoms or thought of the MS for hours” and I am just me. While some people will say that they are “me” with the MS, I do agree to a degree, but I would be happy to be me, without it.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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!

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

 

 

 

 

%d bloggers like this: