Tag: neurology

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

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.

 

 

 

 

Fear

Fear

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

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

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

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

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

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

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.

Choice

Choice

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

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. 

Anniversary

1 Year

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.

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. 

 

Different

different51

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.

When subscribing to / following 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

The greatest teacher failure is – Yoda

365 messy opportunities
365 days of uncertainty
365 days of wonder

What will you do with your next 365 days? When people ask me what it’s like to live with multiple sclerosis the first thing that comes to mind is add more uncertainty into a life that is already uncertain. Sometimes it’s mundane, sometimes it fucking sucks, and sometimes opportunities arise that wouldn’t otherwise.

At the beginning of this year it definitely fucking sucked, but 364 uncertain days later, well, it’s not just ok, but it’s pretty amazing. It’s easy to focus on the diddints, as in I didn’t win the lottery, I didn’t lose those 10 or 50lbs, or I didn’t master the art of baking, BUT…

I DID start my own business, I DID travel overseas to see good friends and to new places, I DID spend time with people I love, I DID start this blog and accompanying social media, I DID start a great fitness routine (more after the New Year!), I DID create new memories, and I DO look forward to the next 365 adventurous days to come.

I wish you good health, happiness, prosperity, and loads of DIDs for the New Year.

PS – And I DIDN’T have a flare-up this year. I was just too busy DOING the above DIDs. And that’s a good DIDN’T.

When subscribing to / following 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. 

Sick

Sick

Sick (adjective)
affected by physical or mental illness

Tis the season. In the beginning, back in 2009, after my diagnosis and starting treatment, I got sick. Like normal, regular, sick. It caught me off guard because, well duh, now that I had multiple sclerosis, clearly I was immune to the likes of viruses?! Yeah, no.

Each sniffle, cough, headache, turned into a phone call to my neurologist. He assured me that yes, I can still get run of the mill sick and that it was really just a matter of re-learning my body, and that no I definitely was not going to die from having a cold.

What it did do was make me more in tune with the rhythm of my body as I hadn’t been prior. I paid more attention to the sniffles, headaches, and coughs, whereas in the past I would have just moved on or not even notice. Now I had two autoimmune diseases to manage, while being completely insulted that I could still get run-of-the-mill ill.

Fast-forward eight plus years since my diagnosis, I’ve noticed that I actually get “normal sick” less than before. Said neurologist told me that “they” think there is some protective factor from the medicine I take for the multiple sclerosis, though it’s anecdotal.

Lately I’ve been traveling like a road warrior, which I didn’t think would ever happen again. I didn’t think my body could hold up to this type of work, travel, intensity. And while it’s not perfect, and I’m definitely older than I was when I used to do it, I’m more than holding my own with my business and travel. Sure I have gastroenteritis with a cold as a cherry on top, and I have to watch that the asthma is managed, and desperately hope my currently overactive, fighting these bugs, immune system doesn’t cause an MS flare-up, I can still trust in myself and my body.

Lest you think otherwise, I am so proper sick. From my head to my toes, body ache, tissue mounds on the floor, ordering extra Scott from Amazon…sick. Now excuse me while I go back to the “library” to answer the song of the gastroenteritis minstrels.

When subscribing to / following 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. 

Travel

Travel

Travel (verb)
make a journey, typically of some length or abroad

Lately I’ve been traveling (by air) extensively again, both in the U.S. and abroad, for fun and business. I thought these days were behind me. Being diagnosed with multiple sclerosis I didn’t think I could handle the hours needed to do it. Not only do I do it, but I excel at it once again. I think the exhaustion is more about being older, than having MS.

That said, some tips and tricks how I make air travel easier for me.
1) I slowly pack the day before. This has been true since well before the MS. If I pack too far out, I take too much.
2) I take a car service instead of public transportation. This helps to preserve my energy to deal with the airports and flying, which are both exhausting.
3) I arrive early for domestic & international flights to allow for loads of time to get through security. I have both TSA pre-check & global entry. If you need help, ask for it. If you need a wheelchair, ask for it. There is no shame in preserving your energy.
4) If the lines are long I ask to go to the front for medical reasons. Each airport and security line has their own ideas of what sympathy looks like. I find TSA to be short on it for sure.
5) I ask to pre-board due to medical reasons. While I don’t need help walking, not having to board in a crowd cuts down on anxiety, which also reduces stress levels. Anything I can do to tell keep calm, makes a huge difference to getting to where I need to go and being able to function at 100% when I do.
6) If I’m going to be away for more than a night or two, I take one of my own pillows. Sleeping in a hotel, however nice, is precarious as best. Weird noises, varying mattresses, errant digital lights. Anything I do to help sleep better, keeps the MS symptoms at bay. Plus as a Taurus, I much prefer creature comforts. And if it doesn’t impact anyone else, why not!

It took me a long time to be able to ask for concessions, because karma is the great equalizer. I know many people living with this disease who are much worse off, and I thought that I needed to “do it like everyone else,” but then I realized, it’s just like using air conditioning in December if I need it. The more I stand in long lines, the more tired my legs become, which impacts the rest of my trip.

So in the end, I did what I tell others to do. Be kind to yourself and ask for help. It doesn’t make you weak, it makes you strong.

When subscribing to / following 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: