Explaining dysautonomia: what works for me

The holiday season is all about spending time with the ones you love. And also about spending times with people you don’t know so well but you’re at the same holiday party so you might as well make small talk. Small talk that turns into “so what do you do for school/work?” that awkwardly turns into, “should I explain dysautonomia?”

This is my very short formula for explaining dysautonomia to others. It’s been working out pretty well for me, and hopefully it’ll work well for anyone who needs any help.

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Explain your dysautonomia.

My explanation for dysautonomia changes and develops weekly, just as my dysautonomia does. This illness isn’t static, it changes as frequently as I do.

My standard, quick explanation when I’m out and about is:

I have cardiac/neurological condition called dysautonomia where my autonomic nervous system which controls a ton of automatic functions gets very confused. The ANS controls your heart rate, blood pressure, digestion, et cetera. My subtype is called Postural Orthostatic Tachycardia Syndrome, and the most noticeable symptom is that every time I stand up, my heart rate jumps up at least 30 BPM, which is twice what it should. With so many things out of balance in my body, it causes extreme fatigue, brain fog, digestive issues, cardiac problems, body aches, and a ton of other problems.

In writing, it looks like a lot. But when you say it out loud, it’s not that bad. If someone gets bored listening to you explain a very complicated illness in 4-5 sentences, they’re probably going to get bored listening to everything else you have to say.

Feel comfortable with the words that you’re saying–if you feel comfortable using some doctorly words, go for it, but don’t forget who your audience is.

Contextualize it.

So all of these symptoms are listed, and someone can guess what it means for your life, but help them understand it further. What does it mean to have your heart rate jumping up 30 BPM all the time? What does brain fog mean for you versus someone else?

  • Because of the dizziness, I have to be very careful every time I stand up and with every step I take.
  • I have a lot of concentration problems and now have to take a reduced course load at school.
  • No matter how much I sleep, I’m still fatigued most or all of the time.
  • I’m on a high salt, high fluid diet in addition to taking several different medications at various times throughout the day.
  • I have to use a seat in the shower because the hot water aggravates my symptoms.

Make sure the person listening can see themselves in the place of a POTSie (or any other dysautonomiac). If you want to, you can really open up, or you can keep it surface level. It’s all about what feels right for you.

Share your goals and hopes for dysautonomia.

I usually share my “next step” for treatment or my latest update.

  • I’m trying a new medication and it’s supposed to help increase my blood flow and fatigue.
  • My new exercise plan includes physical therapy so I’ll get some support there.

… OR, say “I don’t know what’s next.”

I’m a fan of the ever-authentic answer, “I don’t know what’s next, we’re just playing it by ear.”

Leaving things open-ended with your dysautonomia story is almost more true to the spirit of this illness: none of us know where this is going because there is no cure yet, there are no ultimate answers for what to do to treat it beyond hydrate, salt, and exercise.

Above all else, go with what feels right when explaining your story. Share everything or share nothing, as long as you feel good about it.


Duke and Casey and dysautonomia

My dogs are the loves of my life. The day we brought them home was the happiest, scariest, most exhausting day I’d ever experienced. When they do what I ask, they are the greatest joys of my life. And the other 99% of the time, they drive me nuts.

dogs-pups

For as spectacular as dogs are, they don’t “get” chronic illness. And how could they? They’re animals. They’re mostly occupied with following whatever smell is most interesting and getting their butts scratched.

But over the last four years, my boys and I have grown together and their behaviors have also helped me treat my dysautonomia or at least make me feel all warm and loved inside.

They remind me to drink water.
Filling up the dogs’ water dish is a reminder to fill up my own water bottle. The boys love to hydrate (and possibly over hydrate) and are a good and timely reminder for me to drink more. Casey needs water? I need more water. Thanks for the heads up, pup.

They get me up.
They say it’s always good to have someone to hold you accountable when you start a new diet or lifestyle change. Here’s the ultimate in accountability: if I don’t get up at a certain time on the days my mom works, there’s going to be a disaster waiting for me to clean up. My body is screaming for more sleep, but Duke and Casey need to be let out. And they also need some love.

They get me outside and moving.
I’m still not in good enough shape to take them walking, but they still have me moving constantly. My boys like barking, and sometimes the only way to get them to stop is to get up, go outside, walk down the steps of the balcony, and get their attention by clapping my hands a foot away from them. Whatever it takes to stop the mania.

Casey waits for me.
Duke will dart up the stairs, presumably to root through garbage before I can stop him, but Casey climbs each flight, pauses at the landing, and waits for me to join him before continuing. I’m slow and he waits for me. He does the same thing when I go to the bathroom before taking him downstairs or stop to talk to my mom.

stairs

Duke keeps me warm.
Duke is our Little Man and loves to cause trouble and then snuggle. His preferred spot is in the crook of someone’s legs, resting his tiny head on top of their knees, soaking up their warmth but also giving off his own. He’s the most useful animal in the winter when he decides you’re worthy of his embrace.

dogs-sleep

They are the world’s best prewash.
I try my best to never give my dogs table scraps or leftovers and I’ve done a pretty good job—they know not to bother with me when I’m eating because they’re not getting anything. But when I occasionally cook, I’m usually exhausted from doing so and have barely enough energy to do my dishes. That’s when it’s a godsend having the world’s greatest prewash: two golden retrievers who will not stop until they get the job done. I have a list on my phone of dog safe and non-dog safe foods and try to make sure the prewash is the highlight of Duke and Casey’s week. It usually is.

They help me connect.
It was so hard watching my friends continue their lives off at college and getting jobs while I stayed at home working on getting better. But every time I shared a picture of my dogs through texts or Instagram, I’d get “so cute!” or “so jealous!” comments because (1) my dogs ARE the cutest; (2) everyone misses their pets; (3) animals are the common ground to connect through.

Unconditional love.
That’s why we get dogs, right? Because we want to love and get love back? These two animals have literally licked my tears away when I’m in pain. Those big, goofy golden retriever smiles have carried me through flare ups and I hope I can make them as happy as they make me.

Casey's equivalent of a hug?

Casey’s equivalent of a hug?

I know that I’m not the best dog owner. And I know that some of these things will make good dog owners and trainers cringe. But I do my best to make things work—to make dysautonomia and to make Duke and Casey work. Because one of them I can’t get rid of, and one of them I refuse to get rid of. BECAUSE THEY’RE SO DARN CUTE LOOK AT THOSE FACES JUST LOOK AT THEM.

dog-collage

And yes, this post was partially an excuse to post pictures of my dogs.


It’s happening

In one of my all time favorite pieces of The Colbert Report, Stephen goes on a journey to sell his portrait for megabucks at a New York art gallery. He goes the whole nine yards—he has it appraised by several art appraisers, he learns all about the art scene from the art curator Simon de Pury, he shmoozes it up at the pre-auction cocktail party, and he crashes the actual auction.

The whole time, he’s happy as a clam (and a little tipsy at the cocktail party) and keeps sing-songing variations of “it’s happening!”

After it aired, I immediately adopted the entire series of phrases. I was soon greeting people by calling out, “is it happening?” or “there’s a happening happening!” every time I felt excited about something. This was occurring at a time when I was coming out of some darkness and finally seeing some light, relief. And it was my spring semester of my senior year of high school, things were very much happening. (Although they weren’t as spectacular as Stephen Colbert dancing to “Gin & Juice” with a Frenchman.)

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Stephen & Simon de Pury jamming to Snoop Dog (The Colbert Report/Comedy Central)

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Dysautonomia Awareness Month kicked ass all because of volunteers. (Pardon my French.)

Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)

Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)

I burst into tears the day I saw that Nasdaq billboard in Times Square was lit up turquoise with the word dysautonomia plastered all over it.

It’s happening.

Two years ago, I’d never heard of dysautonomia. My mom and I had trouble pronouncing it—her proclivity for other languages and their rules had her falling over syllables. And I couldn’t keep track of what letters went where. But we got it right pretty quickly.

Two years ago, as we were learning what this disorder was, we were also explaining it to my doctors. We were shopping for cardiologists who had also heard of it, who had heard of POTS. Some would say “no” and offer up a treatment plan, a treatment plan that was completely wrong for me.

Now? Things are different.

Today, I’m getting e-mails from my cousin at a conference for anesthesiology with pictures of poster presentations on POTS.

Today, my friend who works for a T-shirt design company is getting tons of custom orders for Dysautonomia Awareness shirts.

Today, my doctors are collaborating together on new projects. There’s a lot that they do know, and everything they don’t, they’re making plans together to figure out and to treat me in the process.

It’s happening.

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I recently got some potentially incredible news that my insurance company might be coming through for me on something big. I’m staying ridiculously cautious in my optimism, but this, like seeing the Nasdaq billboard lit up turquoise, was one of those “cry your eyes out, this is happening” moments.

I’ve been pretty fragile lately. My doctors have been wonderful, reminding me that expectations change when circumstances change. I felt like I wasn’t achieving anything and like I was cutting myself too much slack. I should just push harder, that’ll fix it, right? I wanted results, I wanted to see something happen.

But there are some times when pushing won’t fix it. There are some times when you have to pull back a little bit. A lot of people believe that you have to keep goinggoinggoing all the time to treat dysautonomia, but on the advice of my doctors, I’m pulling back just a little bit. I’m just going to keep going at a slower speed and see if I can make things happen that way.

So I’m working on being good to myself, and I’m working on those happenings.

And in the mean time, big things are happening for dysautonomia.

And that’s pretty freaking cool.

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“Let’s make it happen!” (The Colbert Report/Comedy Central)

(Please, do yourself a favor and watch all three parts of Stephen’s quest to sell his portrait–it was for charity, after all: part one, part two, part three)


Side effects are Midodroning on and on

I’ve been on some type of daily medication since I was 10 years old. The medicines and dosages have changed over the years, at times I was only on one or two, now I have to take about 18 pills a day. (I’m considering buying stock in CVS just because my family is basically keeping it afloat.)

One of the hardest parts about medicine is going through any type of meds changes. Even if it ends up being the best medication combo of your life, if you have a sensitive body (like mine) the adjustment period can be terrible. The time it takes your body to get used to new levels, new chemicals, is agonizing. And when your body is already in crisis mode and you need to go through a quick, aggressive change, your body responds to the change equally aggressively.

I’m undergoing some adjustments with my mood stabilizers and I’m also starting Midodrine which I’ve learned anecdotally can be like a miracle drug for some POTS patients. I’m learning that it might not be my miracle drug, but it could still be helpful.

This is one of my more frustrating meds changes because I’m getting one of the commonly talked about side effects—a tingling sensation in your head—but way more prominent for me is the fact that I’m cold 80% of the time, I feel like I have to pee every hour, and I get nauseated super easily; all of which were side effects not advertised to me.

I was born to withstand cold. I was conditioned to Chicago and Minneapolis winters in the first five years of my life as well as my mom’s proclivity to keep the thermostat at or below 70 degrees. I thrive on cool temperatures. So when my body starts shivering and saying any chill is uncomfortable, I start to worry.

The first day of Midodrine, I was surprised that I could feel anything at all. I usually chalk up any feelings to a placebo effect—the mind is a very powerful thing—but the side effects have lingered.

Being cold is frustrating (and confusing), but it’s not intolerable. Hot flashes would be intolerable. I probably would’ve stopped taking Midodrine after 72 hours if it was hot flashes. The cold means I get to wear extra layers and burrow into blankets. It means I get to keep my favorite jackets on and wear fuzzy socks. (Leah just got me brand new fuzzy fox socks for my birthday that I can’t wait to rock.)

I’m still optimistic though, because a lot of side effects fade away after the initial meds changing period. After about two weeks, the harshest side effects disappear or at least calm down and in their place are the benefits of the medicine.

So I’ll stay bundled in my blankets, a little more nauseated than normal, and I’ll let you all know how the Midodrine works out. And if it doesn’t work out, we’ll try another.


Spin class kicked my ass

I went to a spin class yesterday.

post workout bubble gum, zengo style

post workout bubble gum, zengo style

And for all of those who know me and my distaste for intensive exercise, I say to you, RIGHT?

I’m undergoing a bunch of meds changes and I went to a spin class.

And I’ll be feeling the effects for quite some time now.

But it was for several good reasons:

  • I got to be surrounded good people
  • it was a fundraiser for Dysautonomia International
  • I now get to say “yeah, I’ve taken a spin class before”

My current exercise routine is pretty basic: six days a week, I get on my recumbent bicycle and cycle for a designated amount of time while watching late night television. And every week, I up the amount of time by a minute. Yesterday was the 20 minute mark.

The class itself was 45 minutes, so for the half I couldn’t exercise, I was hanging out on the bike, wiping my forehead with the towel, rehydrating, and watching in awe at everyone’s energy. I was also playing the “see if I can balance on this seat without holding on” game—I’m proud to say that I won this round and I don’t know if I should tempt fate ever again. The stakes were too high.

It was a great environment—tons of energy, tons of positive reinforcement, lots of “no one is judging you!” which is one of my favorite types of statements. Normally when I exercise I like to either be alone or I imagine myself in a Harry Potter invisibility cloak. As it turns out, a spin class with the music booming and the lights off offers the same kind of effect.

I never imagined that this type of thing would be possible for me. Again, I completely tailored it to work for me, but that’s really what life with dysautonomia is about—making the things around you work for you because your body can’t do that for you all the time. Mine was such a Spin Class Lite experience, (most everyone else did the real deal), but I STILL DID IT, and I’m still going to be feeling the burn with every step probably for a few more days. (And the burn is so real.)

Huge thanks to Elyse Schwartz for organizing the event (all huge thanks to her for being an all around superstar human being) and a huge thanks to everyone there for being kind and supportive. It’s a good rule of thumb that you’re bound to run into superior humans at dysautonomia events.