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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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.”  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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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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Anxiety

Anxiety-600X600

 

Anxiety (noun)
a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome

Today started out with loads of things on my to do list in advance of leaving for a business / personal trip tomorrow morning. Anxiety had different ideas for what my day would turn into. Anxiety doesn’t give you a reason, it doesn’t make sense, and it’s super inconvenient. Kind of like a drunk uncle at Thanksgiving that everyone just wants to send home, but you can’t quite bring yourself to say see ya later, bye.

It’s probably been years since I’ve had this type of feeling. It wasn’t that kind of anxiety you feel before a talk, performance, or seeing someone you haven’t seen in a long time. It’s the type of dread, and argument your gut is having with your brain, that makes you think, do I need to call / text someone, or is this an emergency room visit.

Anxiety forced me to alter my day to give into it, which made me feel even worse. I want to give anxiety the middle finger and move on from it, but things don’t work that way. I did all of the usual recommended things like rest, listen to a meditation podcast, go for a walk. Barring an anti-anxiety med, which has helped many people I know, I remembered CBD oil (cannabidiol) can help! Et voila, that I can do.

Over the last two hours I’m feeling a little bit better as a result. Anxiety is still sitting on my shoulder, but it doesn’t feel like my brain and gut are fighting with one another anymore. And I can get on with that to do list.

What do you do to fend off anxiety?

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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.

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Stigma

Stigma concept.

Stigma (noun)
Medicine/Medical – a mental or physical mark that is characteristic of a defect or disease

I’ve been thinking about stigma through most of my career in healthcare communications. Having worked across just about every disease and disorder category you can think of, one of the things we’re often tasked with doing is to help “dispel” stigma around living with diseases. What I’ve learned during the 20 years in this area is that the only people who can truly smash a stigma on its head is someone living with that disease or disorder.

Now herein lies one of the problems with trying to do away with stigma, you have to talk about it publicly. It needs a face. People need to know that stigma is their partner, child, brother, sister, cousin, best friend. Whether it’s with close family and friends or on a broader platform. And in the U.S. at least, if you come out on that broader platform you potentially put your career in jeopardy. I deal with stigma every day whether someone knows I have MS or not. Stigma is all around us. In the media, online, in conversations. Our society favors the able bodied, fit, person.

I’ve seen people in wheelchairs talked over as if the person doing the talking automatically assumes said person in the wheelchair has brain damage and couldn’t possibly understand them. Or better, they shout at them. Now I’m sure I’ve been guilty of this somewhere in my life, but being diagnosed with a neurological disease magnifies those societal blips.

I have a unique story. If anyone has heard the actual way I received confirmation of my diagnosis, they know. It was funny in the moment, and it’s funny now. Combining my experience with living with MS and working in healthcare, I have attained the necessary skills to be able to help people who come after me. BUT I haven’t been able to be nearly as open as I would like due to the fear of said story-telling having a negative impact on me professionally.

Clearly my brain works, no really, it does. And in the past I have gladly accepted that even when I’ve gone through the worst of my flare-ups I can handle doing more professionally and personally then someone without MS. That said, even working in healthcare I couldn’t come out to my managers. There’s that silly stigma again. The idea that I would be looked at as less than if I made a mistake. And most times if I do make a mistake it has absolutely nothing to do with the MS. And if it does, it’s because I’ve worked too many hours and am incredibly fatigued. Under those circumstances everyone makes mistakes.

Another area of stigma surrounds mental health. For reasons unbeknownst to me we don’t treat emotional well-being as importantly as physical. And more often that not, issues with mental health are in fact physical. I don’t know too many people who would ignore having diabetes or cancer. So why do we ignore our mental health? Stigma!

People close to me know I am a total Britophile and eagerly watched Will and Kate get married, awaited both babies with baited breath and have now watched Harry come into this own. Over the last 24 hours he has given interviews detailing that he needed to seek therapy for depression. Remember when he was caught naked in Vegas? Or coming out of clubs in the wee hours? He never fully dealt with the death of his mum and his brother lovingly told him he needed help. When someone of his visibility comes out, especially in the English culture of keep calm carry on, many others feel they can as well.

One of the symptoms of MS is depression. And along with all of the meds to treat the disease and symptoms comes depression. And then you have a flare-up and you’re depressed about that! And then you’re depressed coming off of all of the meds. Screw serotonin! The depression I’d always experienced was either situational or related to being on treatment and follow-up for a flare-up. Until the end of November.

I came home from a grueling day of work and was just spiraling. I stood in my living room feeling as though I needed to head across town to the emergency room where I used to work. I could not stop ruminating. Fortunately a good friend, long distance, over instant message talked me through it. Given this was the first experience I had like this not related directly to meds, I knew medical intervention was a must. This was a Thursday night and Friday I had an appointment with my neurologist for the following Monday. A few days later I started on Zoloft. Hey stigma, how you doin’? Now how can something be a stigma when more than 15 million American adults are living with it?

Those first weeks the nausea was, well,  nauseating. One Saturday night after being out I was wandering the streets at midnight looking for Emetrol for the nausea.

I kept wondering when it was going to “kick in” harkening back to college days. Another friend assured me that I wouldn’t be turning purple or growing a unicorn horn, but that I would “just know.” Part of my fear of new meds is side effects. I would wreck any clinical trial I tried to participate in because I’m the person who gets the side effects. I get side effects no doctor has ever seen before. I’m that person.

Probably about a month into taking it, I started to feel happy. And I mean nauseatingly happy. Like the kind of happy my friends and I would make fun of. Full disclosure, I also started working out every day coinciding with taking the medicine. Fast forward several months and while yes, some say it’s a magic pill (I don’t disagree), but I was also ready for a change. And honestly, it feels GOOD to wake up happy each day. It’s allowed me to tackle something professionally I’ve wanted to do for years (saving that for another post). It’s afforded me the opportunity to start this blog and has cleared my head of “you’re not good enough” and imposter syndrome and most importantly not spending my days hating myself.

I’d like to think this is my little piece of helping to end stigma.