Afflicted

Afflicted

Afflict (verb)
(of a problem or illness) cause pain or suffering to; affect or trouble

Women being diagnosed with hysteria as a result of mental illnesses didn’t disappear from the Diagnostic And Statistical Manual of Mental Disorders (DSM) until – 1980! Yes, 1980. Hysteria was basically the medical explanation for everything that men found mysterious or unmanageable in women. And it continues to be a synonym for over-emotional or deranged behavior.

Some of you may be familiar with the new Netflix series Afflicted. I first came across it on Twitter the week before last as it was getting panned by the chronically ill community, including one of the people who took part in the “docuseries” who is living with an extreme form of myalgic encephalomyelitis (ME). ME often starts as a result of trauma, like a car accident. Some interchange it with chronic fatigue syndrome, but it is more severe, often leaving people bed ridden for months and years.

I’m assuming these people were approached by the producers who said it would help to raise awareness of these diseases that could be considered “all in your head.” While I haven’t finished watching it yet, I fall somewhere in the middle that a few may indeed be in their head, but others for sure in their body. Either way, people need genuine help. I remember having someone fairly close to me say, “it’s almost like you’re trying to find something wrong.” No, I KNEW something was wrong, and it was actually typically wrong for MS (weakness & numbness).

As someone living with multiple sclerosis a chronic (and sometimes acute) disease, I can appreciate how people “just want to feel better.” On the other hand, it’s also hard to see these people spending millions of dollars on avenues that lack scientific research. But you also can’t win in these situations, because people tell you to do “something,” but then when you do, it’s wrong unless it’s Western medicine. And since these diseases and disorders are so new, what Western medicine should it be? I do question why some of the people featured have turned down mental health support, especially given the whole mind/body connection.

Just like with hysteria in the last century, we have moved into a time of unknown illnesses. There is no doubt we are all exposed to more environmental factors, than even I was as a child 40 years ago. The show talks about electromagnetic sensitivity, as I look around my apartment to see: two laptops, a monitor, two TVs, wifi, cable modem, wifi speaker, and a mobile phone, it does make me wonder for a moment if the electric impulses I feel MANY times per day due to the paresthesia aren’t enhanced by all of the devices I have in a small space. Keep calm, carry on.

Several people in the series suffer from multiple chemical sensitivity. And around 25% of the general population reports essentially being allergic to life. All of the perfumes, mold, scents, cigarette smoke, animal dander, oils, gas, etc. can be classified as MCS. Those migraines you’re getting, asthma, allergies, sinus infections, strep, and the list goes on, could be classified as MCS depending on what you are exposed to on a daily basis. And we are also just delving into the gut microbiome in research, which is more and more starting to be attributed to the uptick of autoimmune diseases (and pointing towards the overuse of antibiotics). Also keep in mind that the better diagnostics get and the longer people live, the more likely there are to be diseases we’ve not yet heard of, just like a lot of cancers or cardiovascular diseases 40 short years ago.

As if having multiple sclerosis isn’t enough, I’ve also had allergy induced asthma for 45 years. Although the asthma is controlled by avoiding animals, the allergy/sensitivities to scents has grown exponentially since the MS. People always say, well try organic, but what most people don’t understand is there is no such thing as completely unscented. Organic doesn’t mean unscented, since herbs also have scents, and for me it doesn’t make a difference between the two, a scent is a scent. But ironically, the allergies bother me less in the city where the trees are fewer, than in the suburbs or country. Perhaps my immune system has adjusted to city life better. And also my heat intolerance has grown over time. I live in an apartmentcicle. And wherever I go, if it’s not freezing cold, I for sure have symptoms or pseudo-exacerbations, and while cooling down helps them go away, I often wonder what damage is happening in the process all during the hot months.

I felt compelled to do this post, as a result of this series, to say, while from the outside you might think an issue is “all in someone’s head,” it doesn’t make it any less of a health issue. And as a family member, friend, partner, child, as frustrated as you are, imagine feeling like shit 24/7 and not having anything to make you feel even a little better? So the next time someone turns the thermostat to meat locker temps, put on warmer clothes and be happy to spend time with them.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.

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!

IMG_1180

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…

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts. 

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?

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts. 

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!

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts. 

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts. 

 

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

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts. 

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.

When subscribing to the blog, please check your email (in box and spam/junk) for the confirmation note. Once you confirm, you’re good to go and will receive posts.