Menopause

 

Menopause

Menopause (noun)
the period of permanent cessation of menstruation, usually occurring between the ages of 45 and 55

I’m not sure how the dictionary definition of menopause could be so simplistic, since this experience is anything but, and then let us layer in multiple sclerosis on top of that, since the MS isn’t enough!

I’m writing about this a) because I’m likely going through it and b) because I haven’t seen much in the way about MS and menopause, other than I’ve heard from women with MS who have been through it. Some say they didn’t really even notice since many of the symptoms mimic each other.

These details are for women who have had regular menstrual cycles throughout childbearing years, and are never meant to take the place of questions to your ob/gyn.

Let’s start with peri or pre which is “around menopause.”ย  During this time you can expect to experience the early symptoms of menopause: changes in period cycle, hot flashes, sleep disturbances, and / or mood swings. This can start eight to 10 years ahead of actual menopause (during your 30s and 40s).

Symptoms of perimenopause may include: irregular periods (you can still get pregnant!), periods that are heavier or lighter than usual, worse PMS, breast tenderness, weight gain, hair changes, increase in heartbeat, headaches, loss of sex drive, difficulties concentrating, memory issues, muscle aches, Sound familiar? Yep MS!

Menopause officially beings when the ovaries produce so little estrogen that eggs are no longer released (this also causes your period to stop), and remember, women are born with a certain number of eggs and that’s it! An official “diagnosis” of menopause is when you have gone a year without having a period. Due to health and other reasons (family history) you may go through menopause earlier than the standard.

Your doctor can do blood work to check hormone levels. For someone with a history of regular periods, this might be in your early 50s. For me this is a bit more complex because my neuro told me to go on the pill (and stay on it) early on after diagnosis to help control symptoms while ovulating and during menstruation and it worked really well. So well that I haven’t had a period in over 10 years and I never plan to again!

As estrogen levels drop, you might start experiencing: hot flashes (get in line!), night sweats (nothing more fun than changing sheets half awake), depression, anxiety or irritability, more mood swings, insomnia, fatigue, dry skin, vaginal dryness, frequent urination. I’m telling you, MS can give menopause a good run for its money.

There are many options for treatment (or not), but always talk to your healthcare provider about any new or changing symptoms. Just like MS there is no reason to suffer in silence.

What has your experience with menopause (and MS) been? Please do comment!

Signed,
Sweating in 27 degree weather…period, end of sentence

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Decade

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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!

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Treatment

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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

Change

Change

Change (verb)
make or become different

Heraclitus, a Greek philosopher, has been quoted as saying โ€œchange is the only constant in life.โ€

Humans are creatures of habit. Most of us like the status quo, not rocking the boat, and the “idea” of a linear path. In reality, most of us experience the chaos and utter mess that life is, but in that chaos we can often find beauty.

chaos

The last couple of weeks has started a process of yet another change in my life. Not sure if it’s the whole with age comes wisdom thing, since the older I get the more I realize I don’t actually know. Or if the noises in my head have gotten quieter over the years. Or if being diagnosed with the MS 10 years ago, and what I’ve been through since has shown me I can get through nearly anything, but I’m good.

But now that I’m over the hump of “holy fuck,” which genuinely always happens. Like when I made the decision to move to D.C. years ago and had to postpone it by two months because I was having daily panic attacks. But once I make a decision it’s onward and and upward. So now, I am rather looking forward to the change.

When I started this blog several years ago, I used to jot down lists of words / topics to write about thinking that’s the way it “had” to be done, but now they just come to me, and I don’t actually write them until they are literally bursting out and I MUST get it down.

This evening after seeing Marriage Story (Noah Baumbach in all his glory), one of my favorite Lynyrd Skynyrd songs came on, you know, the one that everyone screams at OTHER concerts “ironically.” > Freebird > In it they sing about change and being free as a bird, although about changing relationships, and likely a love partner, being “free as a bird,” can be about any change in life.

“This bird you cannot change…I must be traveling on now…cause there’s too many places I’ve got to see.”

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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.

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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.

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Cruise

 

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Cruise (verb)
sail about in an area without a precise destination, especially for pleasure

I said I would only ever do an Alaskan cruise, since you’re standard, to the Caribbean type deal never appealed to me. Knowing myself well, I was really spot on. While Alaska & Canada were lovely, I most loved the days at sea. They really felt like vacation, and so calm. BUT, I am hooked, but where they go makes a huge different to me. Because my main MS symptom is heat intolerance, being able to be outside in August, not only at the ports, but also on the ship at the pool, was amazing. While I love the ocean, the beach in the summer is too hot for me, as are most beach destinations, even during the winter months. So this is a great option for me. And now I’m looking at another cruise next year through Scandanavian locales.

And while I’m not plugging the cruise line, and I don’t have any mobility challenges, I was so impressed by their efficiency. Just all around, the airline industry could really learn A LOT from them.

Beyond just being on top of getting people through security, check-in, and on board, I watched as people with differently abled needs had a separate area to support them. And once on board, I would say most all of the common areas were accessible, and even the jacuzzi and pool had a lift chair. Though I suspect, like any activity, it depends on how much (or not) assistance you might need. I can’t speak to the ease of ports, but from what I could see getting on / off the ship could work for most anyone.ย It now makes sense to me why some of the MS orgs do cruises as a group event.

Verdict? Sleep away camp for grown-ups, but better.

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