Insurance (noun) a practice or arrangement by which a company or government agency provides a guarantee of compensation for specified loss, damage, illness, or death in return for payment of a premium.
When I say never settle for the first bill from a doctor or hospital (especially a hospital), I mean it.
As of now, a bill under $500 will not impact your credit and Biden is trying to get rid of medical debt (seeing as how there shouldn’t be such a thing) from impacting credit period. So ALWAYS negotiate.
I had an outstanding bill for over $1k from the academic medical center where I get care and I settled it for $500. Which is a lot more than they would have received if I didn’t have a $6k deductible (between what insurance paid out and a co-pay).
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…
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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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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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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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!
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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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Choice (noun)
an act of selecting or making a decision when faced with two or more possibilities
Today is the 9th anniversary of starting on treatment for multiple sclerosis. This amounts to about 486 injections, minus illness, birthday week, and travel. Sometimes it feels like it’s been forever, since I no longer really remember a time when I didn’t feel MS. Some weeks it’s matter of fact and others it’s hard. Fortunately the last 1.5 years, it’s been 90% of the former and maybe 10% of the latter.
Statistics say that there are around 1m people living with MS in the United States, and almost 3m globally. But since MS is not required to be reported, we rely on data that is often manipulated, especially in the U.S., since it relies on diagnostic codes, which are often fudged in order to gain insurance coverage.
In 2018 we are lucky to have 16 disease modifying medicines for MS, with more to come. Just a short 20 years ago, people were sent home with steroids (maybe) and told not to move. Also, there are a host of meds for symptoms and side effects of the disease.
What we still don’t have is a cure. I hear this about MS all time, but I don’t really listen since I know how complex this neurological disease is and certainly not easy to dissect. That said, I do believe there can be better targeted treatments with less side effects. Better (and more) research in stem cells from your own body, rather than having to go through the toxic process of obliterating your immune system, like for people living with cancer.
It’s such an odd thing living with a disease that people can’t see and one that each of us experiences in very individual ways. As they say, when you’ve met one person with MS, you’ve met one person with MS. #snowflake
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Anniversary (noun)
the annual recurrence of a date marking a notable event
April 15 is an anniversary and birthday. It’s been nine years since my multiple sclerosis diagnosis, and a year since this blog was launched.
Nine years since diagnosis and that means almost TEN years since symptom onset. Some days seems like it was a lifetime ago and others, just yesterday.
I was talking to someone a few days ago and I realized it’s hard to even remember a time before MS, before the tingling, before the numbness, before the fear. BUT because there are so many more good days now, those too often fade into a blurry haze of the past.
Last year someone said to me “you just don’t have time for a flare-up this year” and I proceeded to walk around with that in my head EVERY day. And I didn’t have a flare-up. Now I’m not a big woo person, but I guess sometimes the power of suggestion is very powerful. What also REALLY helped was our cold, long winter. It made me EXTREMELY happy and healthy. Ideally I would love to never have spring and summer and live somewhere that it’s cold or cool all year round. And then I remember I’m 110% a NY girl.
I want to thank family, friends, and strangers who support me and have embraced this blog. I love seeing where the readers come from, near and far. I hope that one day in my lifetime this blog won’t be needed, but until it is, thank you, thank you, thank you for looking.
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Different (adjective)
not the same as another or each other; unlike in nature, form, or quality
Some say it’s not good to look back, but then how do we learn from our past?
For the last three weeks, I’ve been walking around scratching my head wondering what I did differently last year that didn’t result in having a flare-up. Why you ask? Be thrilled that it didn’t happen you say? BUT I want to know why, so I can continue doing what I did last year to avoid one this year, and hopefully in the years to come.
I also know that it’s likely impossible to come up with anything more than anecdotal. Some things I did differently last year:
I started a business and am working with people I absolutely 110% respect and learn from all the time, which leads to my better well-being even during stressful times of deliverables. And I look forward to working and helping the team to be successful.
I avoid public transportation during commuting hours. While it’s increased expenses, I believe it’s kept me healthy and less stressed, especially since this is the worst flu season since 2009. Or it could just be that my immune system works so well it can fight H3N2 more effectively than the average person.
I do quite a bit of walking, but haven’t been in a gym in months due to bullet 1 above. Yes, I know, not the best, and I’m slowly working it back in, but it’s definitely different.
I addressed the mental health side of living with multiple sclerosis in late 2016. In my head I knew that it comes with the disease, meds to treat it, and just really living with a chronic illness. I didn’t necessarily underestimate it, but most of the time it was due to having a flare-up and the meds to treat it. Treating your brain health is no different from any other part of your body.
While I will likely never know what I did differently, if anything, I’m just so glad that I didn’t. Which isn’t to say I don’t have symptoms most days, but it’s way different from having an acute multiple sclerosis relapse, which leaves you in pain, exhausted, and wondering if you will ever recover.
Today whatever that “different” is, it’s working. Today I feel good, happy, and productive.
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Two Faces of MS 