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 the show. 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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Anxiety

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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, 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 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 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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Stable

Steady Firmly fixedStable (adjective)
not likely to give way or overturn; firmly fixed
not deteriorating in health after an injury or operation
sane and sensible; not easily update or disturbed.

I call it MRI Monday, which fortunately included results on the spot. and it was all STABLE.As noted above, stable can have many meanings. It can be firmly fixed, like roots that grow into the ground or a cement foundation. Or it can refer to being sane and sensible (whatever that means). But in this case, stable means the multiple sclerosis isn’t progressing, at least clinically on high powered imaging. And because I feel better than I have since before the diagnosis nine years ago, I’d say it’s better than stable.

Interestingly my neuroradiologist was more concerned about degenerative disc disease which has improved as well. And I’m attributing that to the awesome Pilates I’ve been doing since March (stretching & lengthening!).

Though to keep things in perspective, it doesn’t mean without symptoms, but these days those are pretty minimal as well, as long as I keep stress DOWN, and the air conditioning UP.

Stay cool in these deep days of summer!

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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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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

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Birthday

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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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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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