Tag: twofacesofms

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

Invisible

Invisible (adjective)
not perceptible or discernible by the mind

Multiple sclerosis, for many, falls into the category of an invisible disease. Meaning that you can’t see the symptoms that someone has, though it doesn’t mean they don’t have any.

I have symptoms EVERY.SINGLE.DAY. Am I fortunate that they are mostly tolerable after nearly 12.5 years of living with them? Sometimes yes, sometimes I just want to tear my hair out. And other days I literally try to will or blow the symptoms away.

So it’s kind of ironic that I have an invisible disease, because at this point in my life I also FEEL so incredibly invisible. A couple of months ago I noticed that I constantly had to move aside on the sidewalk to let people go by.

The first few times I thought wow those people walking together were really in their own world. A a few more times and I realized, I’ve become a “woman of a certain again.” That age where not only people don’t see you, they don’t even necessarily consider you.

From the start of the pandemic, the phrase “we’re all going through this together,” became really popular. And working in communications I knew that we might all be going through it, but it definitely wasn’t together or nearly in the same way.

I didn’t have responsibilities that would take me to the front lines of any field (healthcare, retail, warehouses, etc.). I was cocooned in my own little (VERY little) space. I wan’t even particularly nervous that I would get it since I didn’t have anyone coming or going who worked on the frontline, no kids to be concerned about either.

While everyone I knew was for sure going through it, it’s been in VERY different ways. I had a few friends say and write that they envied their single friends with no kids who could do video chats for happy hour while not having to worry about virtual school. That said, I also didn’t have anyone touch me for three months.

I realized this when I went to finally have my hair done, and teared up because my hair dresser was the first person in all of that time to put her hands on me. And while I couldn’t have imagined sharing a small space with someone else for all of those months on end, there were some days where I wish I hadn’t felt so invisible.

I also see this with many other women I know. We are single, no children, careers (though not CEOs or curing cancer), financially secure, and yet it’s still not enough to see myself reflected anywhere. Not in print, not on TV, not on expert panel discussions, really nowhere. In the media, etc. you see either women with partners and kids or they’re CEOs, or they’re curing cancer.

Articles are about how women with kids are penalized in their career, which is 100% true, but I have for SURE been at the end of the misogynistic stick and not had the same opportunities as men for different reasons. Which is largely why I created my own nearly five years ago.

While I wouldn’t change some of those things for anything, I would love not to feel invisible just because I don’t have them. And for the love of…pay afuckingttention when you’re walking side-by-side with people and go single file so others can get by.

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.

Virus

Table from Your Local Epidemiologist as of 23Sept21

Virus (noun)
an ultramicroscopic (20 to 300 nanometers in diameter), metabolically inert, infectious agent that replicates only within the cells of living hosts, mainly bacteria, plants, and animals: composed of an RNA or DNA core, a protein coat, and, in more complex types, a surrounding envelope.

The table above is from the incomparable Your Local Epidemiologist. Normally she is an epidemiologist researching public health outcomes in people exposed to violence. Not only does she do her day job, but also all things (24/7) COVID-19. Along with Dear Pandemic, these scientists have been bastions of truth, up-to-date data, and science about the pandemic. See more resources at the bottom of this post.

It’s been nearly nine months to the day that I’ve done a post. The last 18 months I’ve found the creative sucked right out of me. When people were painting, baking bread, going viral on TikTok, it was everything I could do to push through work and keep up with the roller coaster of the pandemic.

Last year at this time I couldn’t have imagined when a vaccine became available that everyone wouldn’t be clamoring to get it or that it would become political. When I ask people if they could get a vaccine to keep from getting cancer, the response is a resounding yes! Though, I do see people push back against teens be vaccinated against HPV, which studies have shown to drastically reduce head, neck, and ovarian cancers.

In 1947, NYC vaccinated 6m people against smallpox in less than six months. People were lined up around the boroughs to make sure they wouldn’t die. This is what I envisioned would be the same outcome for COVID-19. I also expected there to be a national public health initiative to help people understand the need for wearing a mask and getting vaccinated, but owing to who was president last year, that was literally tossed out the window. I also thought the new administration would take this on, creating a national vaccine database, etc. Alas, this is not happening. And contact tracing was a joke from day one.

As someone who has worked in health and science communications for over 25 years, I’m so disappointed in the lack of viable information from the leaders in our country. Disappointed that people continue to be willfully ignorant. The time for not believing or thinking it’s all a conspiracy theory is long since over, and beyond ridiculous.

Think about it, how could countries that don’t get along under normal times be in a conspiracy together? Like hey country we really don’t like, let’s try to pull the wool over the eyes of these non-believers, go into cahoots to say there’s this new virus, but it’s really they’re dying of something else. And the irony is, the people perpetuating these conspiracy theories at the highest levels are vaccinated.

COVID-19 isn’t the only virus we’re dealing with. There is a full on assault on women, minorities, poor people, voting rights, right to being housed, right to healthcare, right to have food and it goes on and on. Why do people always have to keep someone else down to feel good about their lot in life? Why can’t we make housing, food, healthcare, jobs, a right of birth?

I believe in the collective. Do you?

#GetVaccinated #WearAMask

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.

People you can count on for truth re: COVID-19
Dr. Dara Kass
Rob Swanda
KizzyPhD
Dr. Lindsey Leininger
Dr. Alison Buttenheim
Dr. Kimberly Manning
Dr. Uche Blackstock
Dr. Craig Spencer

Brain

Brain (noun)
an organ of soft nervous tissue contained in the skull of vertebrates, functioning as the coordinating center of sensation and intellectual and nervous activity.

The brain is the epicenter of the body. Most people think it’s the heart, but without the brain, the body can’t work. The brain is the captain of the central nervous system, also include the spinal cord. The brain plays a role in the control of most bodily functions, including awareness, movements, sensations, thoughts, speech, and memory. Some reflex movements can occur via spinal cord pathways without the participation of brain structures.

For those who aren’t aware, multiple sclerosis is a disease of the central nervous system. Nerves run throughout your body from the tip of your head to the ends of your toes, and everywhere in between. Picture a coaxial cable, or even a garden hose. With MS the body’s immune system thinks the outer coating of the cable is a foreign body and works to poke holes in the coating. And once that happens, nerve signals aren’t able to travel normally to all points throughout the body.

Now as much as I don’t like to think about it this way, I am in fact living with a neurological disease.

I recently told a few people that didn’t know prior, and their response, “I never would have known it.” And this is how I know the stigma still exists about what MS is, and isn’t. Despite the fact that owing to the advances in diagnosis and treatment, approximately 30% of people with MS progress, the general public still thinks of wheelchairs when someone says multiple sclerosis. That said, being in a wheelchair doesn’t make you incapable of living a full, productive life. So the stigma still exists, which leads to chronic under-and-unemployment of people with disabilities, of which MS is actually one.

All of that said, I have a neurological disease. While I’ve been told, “but you look so good,” more times than I remember in 11 years, and feel like I’m intact cognitively, the plain truth is that the disease can impact me at any moment in a myriad of ways. My brain can play tricks on my mind, I can be anxious, fatigued, in pain, intense tingling (known as paresthesia), depressed, grouchy, moody, sad, angry, cognitively “off” and a myriad of other emotions and feelings. And that’s not even the day or two after I do my weekly injection, which impacts my brain in ways that I have to remind myself, “this is just the medicine playing games with your mind.”

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.

Follow & Like on Twitter and Facebook

Normal

normal

Normal (adjective)
conforming to a standard; usual, typical, or expected

I’ve always wondered what normal is and why anyone would want to be it? Normal always sounded so boring to me. And normal as compared to what? Is it what society says is meant to be normal? And at different points in your life there are different normals.

I remember back after I was diagnosed and so, so, so sick. The bargaining started. If only I could be my former self again. I don’t remember ever mentioning being normal.

Since COVID-19 slammed into the U.S. earlier this year, people have been talking about getting back to “normal,” but I think it’s really about stability. Humans are creatures of habit. We crave thinking that we have everything under control, when it’s really the illusion of control. We crave whatever version of normal is our own.

When you’re diagnosed with something like MS, life, which is already uncertain, has a bit more thrown into the mix. And good, bad, or other, the general population is getting a glimpse into what it’s like to live with a disability or our “normal.”

I have extreme heat intolerance, and I don’t mean like “oof it’s hot out.” I mean, if I go outside when the temps get to around 75F with humidity, my brain starts to not work properly. Or if I’m home and the building heat kicks on at 60F, I need the a/c on. So I’m largely indoors from May through September, with odd trips out here and there. My car hire bills for hot weather months might as well be a car payment and insurance.

Had trouble getting food delivered during the pandemic? Think about the elderly and disabled during regular times and compound that by 1,000 during a crisis. People who aren’t able to easily go to a market were frozen out of online delivery for weeks. I watched this unfold on Twitter re: people with cancer, MS, and other acute and chronic illnesses.

The Americans with Disabilities Act (ADA) passed in 1990, and yet companies are still not held accountable, after 30 years. People with disabilities have been looked over for jobs since the dawn of time, but literally overnight, we shifted to work from home for most of the corporate world, and suddenly, technologically, anything is possible (and in reality always has been). In theory, the “new normal,” should open doors for a lot more people. I only hope it actually does.

If we go back to the way things were, the lesson has been lost.

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.

New York City

Roof viewphoto: from my roof 

 

NYC (noun)
New York City comprises 5 boroughs sitting where the Hudson River meets the Atlantic Ocean. At its core is Manhattan, a densely populated borough that’s among the world’s major commercial, financial, and cultural centers. Its iconic sites include skyscrapers such as the Empire State Building and sprawling Central Park. Broadway theater is staged in neon-lit Times Square.

You’re probably wondering what NYC has to do with multiple sclerosis? Well, it’s the epicenter of COVID-19, both in the U.S. and now…globally…and where I’m from (yes, Manhattan, native in my blood & heart) and live, on my own.

I’ve worked from home for several years and while this part isn’t a big change for me, like it is for others that are now, the difference is I break that up by actually GOING OUT. Going out to eat, the movies, exercise, concerts, travel, see family & friends, and shops.

People have asked if I’m lonely, and probably not so much, although I’m a hugger, so I do miss those. Considering I haven’t touched another person in a month. I’m fairly certain living by myself has not only kept the CV away, but also keeps the MS at bay. And I haven’t thrived with MS for the last 12 years to be taken out by a virus that truly is…stupid.

I’d say the City (Manhattan) is probably half empty with so many people leaving for second homes (definitely only 1/3 left in my building).  I have friends that work at the local hospitals, and it is as bad as the news is saying, but even with that I couldn’t imagine leaving. Even with the dystopian nightmare that is happening, there is also hope.

There’s really nothing like a NYer when it comes to banding together, helping one another, and fixing the damage in the aftermath. If you haven’t read the Michael Schulman interviewing Fran Leibowitz [here] it’s really worth it. And I was saying it before the article came out!

I’m so thankful (and, I know, privileged being safe at home) for the essential people working out there across all industries: local farmers that keep the food supply going, truckers, grocery stores, environmental services in the hospitals, food delivery, caregivers, drug stores, cable & phone, and everyone else that deserves better than society has done for them historically.

While the billionaire companies have their hands out for money from the government, that they don’t even need (and they chastise every day people for doing it). Billionaires aren’t the ones doing the work keeping the country running, every day people always have, and always will.

I would like to think that things will change after the thick of the crisis is over, I am skeptical, but would love to be proven wrong. People need living wages (based on where they live), universal healthcare (access to HCPs included!), and proper vacation and sick leave. In just about every other western country, these are a right, not a privilege.

Please be safe, wash your hands, stay home, and let’s steamroll that curve! Alicia Keys got it right…[here].

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.

Treatment

Image result for treatment

Treatment (noun)
medical care given to a patient for an illness or injury

On the heels of three generics for fingolimod* being approved by the FDA for use in the U.S., I thought this post might help people understand the following:

  • Generic
  • Biosimilar
  • Cost for these medicines (including patient assistance programs)

But first an important question to ask:

Is more always better? The answer, it depends.

Generics
When people think of generics, medicines like Tylenol vs acetaminophen come to mind, which is true. HOWEVER, when it comes to medicines that treat diseases like multiple sclerosis it’s not that simple. Even with acetaminophen it’s not that simple. There are things like stabilizers for the drug that need to be taken into consideration in terms of tolerability. Generic does not equal, well, equal.

Biosimilars
Biosimilars are even more complex given how medicines like monoclonal antibodies are developed, and as it states directly in the name “similar.” Generally, the data and information necessary to demonstrate the safety and effectiveness of a reference product will include clinical trials for the disease indications being sought by the manufacturer.**

Rule of thumb for MS and other diseases is if someone is stable on treatment, you don’t want to rock that boat by changing and you can rest assured in the U.S. PBMs like CVS Caremark and Express-Scripts will remove these brands from their formularies pushing people to change meds that work for them (the former has already done it with Avonex for 2020). All this despite what doctors and people living with MS might want or need.

Costs
People assume that these medicines will be cheaper, and for complex drugs that isn’t the case. In the U.S. generics and biosimilars come out around the same cost as the brand because that is what the market will bear, and, to date, we don’t have any government body governing the cost of the medicines which are set by the pharmaceutical companies. And patient assistance programs (PAPs), while currently desperately needed, help, they also add to the problem. Pharmaceutical companies get massive tax breaks for these programs along with great PR. If the cost of medicines in the U.S. were highly regulated like they are in other countries, there wouldn’t be a need for PAPs

While above is simplified for ease of reading, this knowledge is derived from 25 years of working in clinical research and 10 years living with MS. I am always happy to answer questions or point people to information that can help. You can contact me through the website or via social media any time!

Please also see this post about medicine from earlier this year.

To further understand drug costs, check out the great work of Patients For Affordable Drugs

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.

* Of note: Novartis has ongoing patent disputes and fingolimod generics will not be available for the public until these suits are settled, despite FDA approval.

**accessed December 7, 2019 https://www.fda.gov/drugs/biosimilars/biosimilar-development-review-and-approval

Three

Three

Three (noun)
the third in a set or series

Three years ago I woke up overnight having a really bad flare-up. And what I’d learned by that point is that IV steroids are really just like throwing lighter fluid on a flame, more harm that good. Plus I’d never been able to tolerate the oral taper. It was also during that flare-up that I had a through the looking glass experience, and just kept following the March Hare down, down, down. Fortunately I have a great doctor that helped me through it. Combine that with the not being able to treat the flare-up hard, life was like crawling through quick quicksand for three long months.

Fast forward, three years, and I am flare-up free. Not only that, but the symptoms I do have are usually mild as long as I avoid heat and humidity, as if that’s possible four months a year in NYC.

I can’t help but wonder what the algorithm is to keep from having the flare-ups. What’s changed in that time is starting a business, working from home, friends, family, Pilates, boxing, THC/CBD, and treating depression. I’m so happy to have me back, so I guess it’s a good idea to keep doing all of the above. This has been another great year, and looking forward to the future more than ever.

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.

A Lot

 

A Lot
A lot (noun)
very many, a large number; also, very much.

I am a lot of
love
music
smart
tenacious
ferocity
happy
sad
mad
confident
reliable
devoted
sympathetic
fortunate
sensitive
passionate
intrigued
fascinated
inquisitive
curious
nosy
eager
anxious
brave
daring
hopeful
sarcastic
rebellious
unique
dynamic
content
spirited
soulful
pensive
reliable
empathy
caring
kind
dedicated
satisfied
strength
courage

I am a lot. Take me as I am, whatever I am.

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: