Menopause

Menopause (noun)
ceasing of menstruation

MS and menopause have so much in common.
– heat intolerance
– dry / itchy skin
– anxiety
– depression
– difficulty sleeping
– feelings of loss of self
– discomfort during sex
– difficulty sleeping
– fatigue
– hair loss or thinning
– join stiffness, aches, and pains
– loss of self-confidence
– night sweats
– palpitations
– UTIs
– tinnitus
– vaginal dryness & pain
– cognitive changes

It’s challenging going through menopause full stop, but layering a disease that mimics it makes it even worse. Compound that by gynecologists not having much experience with multiple sclerosis and it’s a recipe for disaster. So basically as a woman with MS, I get to play the daily is it the disease or is it menopause.

In a way I was “lucky” because I coasted through the beginning stage of menopause (period stopping) unscathed because I spent 10 years completely suppressing my period which was glorious. I wish I had done that years earlier. There is no reason to get a period except for ovulating to get pregnant. Otherwise, there is no medical reason for it. I wish I’d known that as a teenager, even with the best doctors no one ever provided this huge nugget of knowledge.

In the last few years I’ve learned a ton about hormone replacement therapy from professionals and reading several books. The current HRTs aren’t from the 90s. And moreover, they are safe (speak with your doctor) even if someone has had cancer. Further, there are amazing doctors now extolling the virtues of vaginal estrogen on the socials. I’m seeing post after post, “I was having frequent pain during sex, Dr. Winter (urologist) saved me during a visit with my gyn.” OR “my 90-year old mom frequently has altered mental state, and we found out they were urinary tract infections, and I asked her doctor about vaginal estrogen and she’s a new person.”

We need to normalize talking about what has historically been taboo and overwhelmingly women’s health. The more you know…

Resources

Low estradiol hormone levels tied to worse brain damage in menopause
Information for women with MS about the symptoms and long-term effects of menopause and how these can be managed
Menopause When You Have MS

15 Minutes with: Ashley Winter, M.D. Talks Urology, Sex and All Things Vaginas

Dr. Jen Gunter (ob/gyn) – information & books are fabulous, something for all ages Blood (about periods), Vagina Bible (all things…well you get the point), and Menopause Manifesto (I’ve read this twice)


Masking

Masking (verb)
– cover (the face) with a mask
– conceal (something) from view

The English language is a tricky bugger. We have so many words that mean different things. Take actual masking which everyone has become intimately involved with in the last three years (or not).

One form of masking is visible with some kind of face covering. The other is not so visible meaning you look one way on the outside and another inside. To coin a phrase from The Breakfast Club, “you see us how you want to see us.”

As humans, we are wired to seek acceptance and belonging. To fit in, we often wear masks, concealing our true emotions, fears, and insecurities. We convince ourselves that vulnerability is a weakness, fearing judgment and rejection.

In a world that often emphasizes the need to present ourselves as strong and put-together, many of us find ourselves wearing masks to hide our true emotions and struggles. Masking our mental health can lead to increased stress, isolation, and a lack of support.

My favorite phrase is, “what you see is what you get.” And I guess 90% of the time that’s totally true. But, o0f, that 10% like what I’m feeling now, that’s a doozy. When the devil feels like it’s sitting on both shoulders, telling you just slightly above a whisper that you’re useless.

During those 10% times, it’s everything I can do to get through the day professionally. When I’m done with work, there is less than zero in the tank to take care of me. They say not to make permanent decisions about temporary problems, but sometimes the whispers turn to shouts and the ruminating and pain bears the weight of the world down on your body.

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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.

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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

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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

Year

Year (noun)
the period of about 3651/4 solar days required for one revolution of the earth around the sun

In looking back on my entry from this same time last year, I wrote the following:

“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.”

Scientists now say, it’s very likely that they knew about SARS-CoV-2 as early as last December (a year ago).

As a professional communicator, I want to think that I can come up with something profound to describe 2020. Or that I had some major revelation about the world around me. But the fact remains, that even amongst all of the tragedy, there was still good this year.

And if I could have one wish going into the new year, it’s that we don’t go back to what was before, because it didn’t work. Before was very broken. If we “go back,” the lesson was lost, and people died in vain.

Be safe

Still I Rise
BY MAYA ANGELOU

You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
’Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops,
Weakened by my soulful cries?

Does my haughtiness offend you?
Don’t you take it awful hard
’Cause I laugh like I’ve got gold mines
Diggin’ in my own backyard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.

Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

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Family

Family (noun)
a group of one or more parents and their children living together as a unit

To some, the true meaning of family means a group of people related by blood or ancestry. To others, it has nothing to do with genes and everything to do with love, compassion, and support. The definition of the word family can mean many things.

Three weeks ago today we lost the matriarch of my family, my grandmother Sylvia, at 104-years old. And by family I do mean both by ancestry and not.

I think people were confused that I wasn’t sad. How can you be sad about 104 years, weird yes, sad no? And, to be honest, she ceased being the grandmother I knew 10 years ago after her heart surgery. Though we had a few good years after that, as anticipated, she was never the same again.

May 1940

She lived life on her own terms until the very end. She once told our family that she was coming out of the apartment she’d lived in for 60 years feet first, and she was correct. She danced like no one was watching and ate the cake (A LOT of cake!). And she died peacefully in her own bedroom, with my parents by her side.

Born in 1916 in New Jersey, she faced unimaginable heartache and tragedy throughout her life, but also loads of love and happy times. Following are some of the many, many historical milestones she saw / experienced during her 104 years. Though I’ve never created that timeline for my own life, I can’t imagine it’s as much as she saw.

1914 U.S. entered WW1, which went on until 1918.
1917 All purpose zipper invented
1918 at two years old she very likely lost her mom to the pandemic. (20m people died world-wide, including 500k in the U.S.)
1919 Prohibition 18th amendment to the constitution is ratified, prohibiting the manufacture, sale, and transportation of liquor (later repealed by the 21st amendment in 1933); 19th amendment is ratified, granting women the right to vote (sort of); patent for pop-up toaster filed; first rotary phones
1920 NFL is started; device known as a radio used for the first time on a Navy plane; 1920s first model 2A hearing aid
1923 Walt Disney started; Schick razors patented; self-winding watch patented; first electric shaver; traffic signal patented
1924 first fax; first self operated residential elevator installed
1926 semi-automatic rifle patented; as fridge patented
1927 Charles Lindbergh makes the first solo nonstop transatlantic flight; first electronic TV was invented
1928 Mickey Mouse created; sliced bread invented; scotch tape first marketed
1929 stock market crash starts the Great Depression; foam rubber
1930 Masking tape invented; flashbulb
1931 Al Capone convicted; Empire State Building opened
1932 Amelia Earhart completes the first solo nonstop transatlantic flight by a woman
1935 social security act passed; Nylon discovered
1938 Fair Labor Standards Act is passed, setting the first minimum wage in the U.S. at 25 cents per hour; Superman created; first color TV
1939 to 1945 WWII U.S. declares neutrality in European conflict; U.S. enters WWII in 1941; Gone With the Wind; Wizard of Oz
1939 First air continued car
1940 Marries
1944 GI Bill of Rights
1945 United Nations is established
1946 Dad born
1947 Beginning of Xerox copier
1948 McDonald’s first hamburger stand
1948 to 1949 Berlin airlift; first Polaroid camera
1949 Nato established
1950 to 1953 Korean War
1950 to 1975 Vietnam War; 1950 Charlie Brown created
1951 Julius & Ethel Rosenberg trial
1952 Puerto Rico becomes a commonwealth; first hydrogen bomb is detonated by the U.S. in the Marshall Islands
1954 Brown v Board of Education of Topeka, Kansas declares that racial segregation in schools is unconstitutional
1955 Rosa Parks refuses to give up bus seat
1956 Interstate highway system started
1957 Hoover produced its best selling model
1958 NASA formed; Explorer I first American satellite is launched; DARPA formed; Super Glue
1959 Barbie created
1960 Sit-ins for civil rights began
1961 U.S. severs diplomatic ties with Cuba
1962 first astronaut orbits earth (John Glenn)
1963 MLK Jr. delivers his ‘I Have a Dream” speech; President Kennedy assassinated
1964 President Johnson signs the Civil Rights Act; Beatles visit the U.S.
1965 Voting Rights Act signed; Watts Riot; Pampers patented
1966 Miranda Rights established; HP introduced its first computer; TI first hand-held calculator
1967 First air conditioned NYC subway
1968 MLK Jr. & RFK assassinated; first 911 emergency system; Double Helix
1969 Armstrong & Aldrin lands on the moon; Woodstock; first Internet & email messages
1970 Kent State riot
1970 to 1979 CAT scan technology developed
1972 Nixon & Watergate; compact disc introduced
1973 Roe v Wade legalizes first trimester abortion; first cell phone
1974 Nixon impeached, resigns, receives pardon by Ford; first UPC scanner created; grandpa dies when they are both 58
1976 PET scan commercially available
1981 MTV started
1982 deadline for ratifying ERA passes without necessary votes
1984 First Apple computer; TED conference founded
1986 Space shuttle Challenger explodes after liftoff
1988 Patent filed for genetically engineered mouse
1990 to 2005 Human Genome project
1991 Break-up of the USSR; Iraq War I
1993 Bomb explodes in basement garage of World Trade Center
1995 Bombing of federal office building in Oklahoma
1996 Google created
1996 to 1999 Whitewater scandal
2000 Bush v Gore hanging chads; Y2K
2001 9/11 in NYC & DC; Apple introduced the iPod
2002 Department of Homeland Security created; “war” begins in the middle east
2005 YouTube created; Hurricane Katrina
2007 Nancy Pelosi becomes the first woman Speaker of the House of Representatives
2008 Barack Obama becomes the first Black president of the U.S.; Facebook created
2009 H1N1 outbreak
2012 Pentagon announces that women will now be permanently assigned to battalions. Many women already serve making the assignments official, but still can’t serve in combat; Hurricane Sandy
2015 Paris Agreement (climate change)
2016 SCOTUS rules in favor of equality and declares same-sex marriages legal in the U.S.
2017 #MeToo movement

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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.”

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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.

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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.

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