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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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

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* 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

Happy

Happy

Happy (adjective)
feeling or showing pleasure or contentment

These days I am finding myself happy (and healthy) and sometimes it’s hard to say that out loud for fear the other shoe will drop.

In December 2016 I started taking sertraline for depression. It was the first time I had a really bad, spiraling night, that wasn’t related to the multiple sclerosis (but maybe it is because it’s a central nervous system disease), or being treated for a flare-up. I recognized that I needed help. I reached out to a long distance friend who helped me for as long as I needed it. I went to bed and the next day I went to see my neurologist. And when it came to treating this issue, I couldn’t care less about any stigma that society has about brain health. I didn’t think twice about treating the multiple sclerosis or taking medicine for asthma growing up. My only issue was worrying about side effects. And although I didn’t turn purple, boy did I spend weeks insanely nauseous while titrating up to the full dose.

Fast forward 1.5 years later, and about a month ago I realized the sertraline (and probably age) is likely slowing down my metabolism, which already works backwards, so I decided to split the dose in half. I did this on my own without consulting my neurologist, because I know my body. I also now know how I should feel most of the time (say 80/20 rule). And I can recognize the shit for what it is, and frankly most of the time I just don’t care about stupid stuff anymore. I think the 20%, as Gaga would say, Baby I was Born This Way. And you know what? I’m good with that.

So a bit of a long about route to say most days I wake up happy. I enjoy what I do professionally (and the people I work with) and am having wonderful life experiences (on my own and with loved ones). I feel better than I have since before I was diagnosed with multiple sclerosis nine years ago. I’ve been so leery about saying the latter out loud, especially with my once every 18 to 24 month MRIs coming up next month. Feeling physically and mentally great also allows me to be the best I can be for the people I love and care for as well.

I spend way less time these days wondering when the shoes are going to come tumbling and I happily give the middle finger to the shit that just doesn’t matter.

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Birthday

birthday_balloons

Birthday (noun)
the anniversary of the day on which a person was born, typically treated as an occasion for celebration and the giving of gifts

On the eve of the close of another trip around the sun, I can’t help but reflect on the year gone by. Why is it as I finally get used to saying the previous number, the next number is jamming itself up against my face?

Staring at the last year of my 40s is so incredibly odd. It’s almost as if I wish I were turning 50 to get it over with already. At least then you get an AARP card and loads of discount. Forty-nine feels a little like Florida, or god’s waiting room as my people call it.

I find it interesting when people talk about the date of their diagnosis as being a rebirth of sorts. I still believe in celebrating the day I was born, but my diagnosis day is more about showing a big middle finger to MS and saying you ain’t takin’ me down.

So as I reflect on another trip around the sun, I look back on the good, learn from the challenges to inform the future, and embrace this messy, crazy adventure called life.

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