Gratitude

Gratitude

Gratitude (noun)
the quality of being thankful; readiness to show appreciation for and to return kindness

Tonite was a typical summer evening in NYC, aka hot & sticky. I had planned to attend a great concert, but wasn’t sure my body would hold up to being outside in the humidity, and while it’s not pleasant, I haven’t been giving my body enough credit lately. To set the stage for just how humid it’s been? I have pretty much straight hair and even I’m sporting a top knot these days because my hair is going “poof” the minute I’m outside. So, yes, it’s HUMID. So done with summer!

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I pushed myself to go and was so glad I did. For most of the show the humidity went away a bit and I got to enjoy it. And then when it did come back again, by that point my body was acclimated and I was able to get up and dance for the remainder of the time.

Looking around at the crowd and the NYC skyline and the audience enjoying the music, a wave of gratitude came over me. I’m grateful to have wonderful family and friends in my life. People who both cheer me on and tell it like it is.

I’m grateful that I feel healthier than I have since the diagnosis nine years ago (and 10 this month since symptom onset). I’m grateful to have access to medicine, fitness, and doctors that are part of keeping me healthy (I wish everyone did, but a topic for another time). I’m grateful that I have a body that I’m feeling a little less like its betrayed me or I’ve betrayed it.

I’m grateful to live in a city that cares about protecting everyone, warts and all. And I’m grateful to be in a position to give back to my community and organizations that need it, especially in the current political climate (literally).

Keep on keeping’ on…

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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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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.

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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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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.

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Compare

Compare

Compare (verb)
estimate, measure, or note the similarity or dissimilarity between

I was laying in bed one weekend morning a few weeks ago thinking about how much more I could be doing to grow my business, but then also thinking, how much business I was actually doing each week.

I’ve looked on LinkedIn and read about how people say you must have a business plan, and others who say you don’t if you’re doing what you already know. So as not to keep you holding your breath wondering, I dove in, feet first with little to no fear for the unknown or future. Because when you live with a disease like multiple sclerosis, you spend a lot of time comparing your current life to the one bMS (before MS).

A few weeks prior to this someone I know said I could never do what you’re doing professionally because it’s too uncertain. So now someone else was comparing themselves to me! To which I replied, how do you know that you’re going to have a job tomorrow? The answer, you don’t. So I am willing to bet on myself and not compare where I am currently to previous experiences, good or bad.

As we move about our daily lives both in person and online, it’s natural to make comparisons to others, both every day individuals and famous people. We’re told not to compare ourselves, because you never know the shoes someone else is walking in, but it’s inherent. It’s part of our DNA, to measure ourselves against others. We’re taught it from infants developing like our peers, grades, sports, arts, magazines, movies, TV, etc. How are you doing compared to the other?

And it’s not just about Oprah, Bill & Melinda Gates, or Sonia Sotomayor, we now have people who get their start on YouTube and Instagram. There are cats and dogs (and a baby giraffe) who are more notable than I will ever be, no, truly.  People will say, but don’t look at those things, which is impossible given it’s our way of life right now, and part of mine both personally (this blog and other mediums) and professionally.

I have a voice and a story and this is my way to get it out. Recently, I’ve had little wins where this blog and other social media accounts have been promoted by a very large multiple sclerosis organization totally unprompted. And people have told me they’ve been helped by MY story and MY experience. So, maybe one day, I will be as notable as your favorite dog or cat. But either way it’s ok, because I’m me and don’t need to be compared. 

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Body

body-shape

Body (noun)
the physical structure of a person or an animal, including the bones, flesh, and organs

For as long as I can remember I’ve had a like/hate relationship with my body. Growing up society norms were dictated by magazines, TV, movies, stores, and peers. And with the advent of the Internet we now have a narcissistic streaming medium in our faces 24/7. When you Google “I hate my body” you come up with 78,400,000 hits in under one minute. Seventy-eight MILLION, four hundred thousand!

In the last few years the body positive movement has taken off. I believe in feeling comfortable in your skin, but overall health is important too. The one that has resonated with me is the Body Image Movement. Taryn Brumfitt is an Australian lady who after competing as a body builder, and working out for months and months, many hours each day, said enough. She set out around the globe with a shoe-string budget to interview women of all looks. Her documentary Embrace is truly a global movement. Every woman, man, teen, child, should watch this movie, it’s that important.

It took me a while to watch the documentary, but one day while on the treadmill, I gave it a go. As the speed and incline increased, so too did the silent tears streaming down my face. As Taryn’s and countless other women’s stories unfolded, I saw some of each of them in me. Her movie is available on Netflix, Amazon, iTunes, amongst others.

When asked if they like their body, 80% of women will answer with a resounding no. And on top of that girls as young as four think they are fat and are already comparing themselves to unrealistic, unattainable, bodies.

Three years ago I started working out with my trainer, now sorta, kinda older brother I never really wanted. When we met I told him if he was going to tell me I couldn’t have chocolate anymore, he could turn around and walk out because I would NEVER be that person. In the nine months that followed I lost 18lbs.

My goal was to build strength and a side effect of that was weight loss. I felt great and looked good. I didn’t really change my diet as much as my sugar cravings went away to be replaced by healthier options. And then I had a bad flare-up resulting in IV steroids and other meds for side effect management. It took a good six months to feel better, and although I exercised on and off I didn’t truly get my groove back until much later. It gets more and more difficult to emotionally bounce back from flare-ups each time.

Fast forward to February of this year and I was on vacation and told my body, “it’s time to get going again.” I’ve been working out almost every day since. And whether it’s being a few years older or the Zoloft I started taking in December, the weight isn’t coming off the way it did a few years ago. I’m not eating anymore than before, but I think the Zoloft might have halted my metabolism, although it’s afforded me the ability to work out in the first place, amongst many other things that I have accomplished this year.

I’m not just casually strolling on the treadmill. I’m doing full on drenching sweat equity exercising between cardio and free weights. And I’m also well into boxing and I LOVE it! I LOVE boxing! Sparring with gloves and mitts is one of the best workouts I’ve ever had. It combines cardio and strength training and I get to hit things without getting hit back, yet!

While losing weight is a goal, I am learning to be kind to myself. Recognizing that my body has held up to surgeries, procedures, full out blissful dancing at concerts, skiing, car accidents, and two autoimmune diseases, and it still keeps going. That demands a modicum of respect for my body. Today I am strong, confident, and happy.

Dove body image campaign 2004