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.


#MyGivingStory & #GivingTuesday

Oh hey, fancy seeing you there!

If you’re not already familiar, #GivingTuesday is an awesome program that encourages people to give to charities on the Tuesday after Black Friday and Cyber Monday to get back into the true spirit of Thanksgiving.

This year they’re holding an essay contest called #MyGivingStory and the winners could get up to $5,000 donated to their nonprofit of choice. ($5,000 could mean research! Physician education! Resources for newly diagnosed patients!)

The 15 essays with the most likes will be the ones submitted to a panel of judges–so now it’s crunch time.

I submitted my essay today about Dysautonomia International, and if you’re into it, it’d be great if you could like it.

Click here to read and like my essay. Please!

And also, on December 1st, give to charity! Especially Dysautonomia International! Even if it’s only $1!


I hate exercise, and you can’t make me like it

Quick note: This isn’t one of those posts where I end going on a long tirade that ends up saying “gotcha! jk I love the thing I claim to hate.” Those annoy me.

When I was diagnosed with POTS, a lot of people were sympathetic to the diagnosis and to the fact that with it, I was taking on a new banner and new identity. But for me, the worst part of it all was not necessarily the “chronic” or the uncertainty, but it was the treatment plan.

  • Water, doable.
  • Salt, doable.
  • New meds, doable.
  • Exercise? HOLD UP.

Intuitively, as a person with a brain that understands the basics of biology and the Health & Physical Education curriculum from Fairfax County Public Schools, I understand the essence of how exercise benefits the human body.

BUT, as someone whose primary symptoms are tachycardia, chronic pain, dizziness, and random unsolicited adrenaline surges, I’m not crazy about participating in the activity that wildly exacerbates ALL of those things.

I was dreading the entire exercise process: the blood, the sweat, the tears, the sweat, the more sweat because I can’t control my body temperature and because summer in the mid-Atlantic is a sick joke.

But my first cardiologist post-POTS diagnosis said the right words to get me started on exercise.

“It’s not gonna feel good.”

YOU HAVE MY FULL ATTENTION.

Because up until that point, doctors always painted the unrealistically happy portrait of exercise to me, someone who couldn’t achieve any of the goals they were suggesting. I’d list all of my symptoms and they’d come up with ridiculous suggestions that didn’t fit what I was capable of:

  • “Why don’t you start up a jogging group with your friends?”
  • “You should take a fitness class at the local rec center!”
  • “Have you tried pilates? Do that and some cardio every day, I think you’d like it!”

And then here comes this new doctor, honest and realistic:

“There’s really no good treatment for POTS, and your body isn’t gonna like exercise, but it’s important and really the only thing we got.”

I started slow. He had me walking for five minutes a day every day for a week. At the end of the week, I increased my time by a minute. And I actually did it, because he was the first physician who didn’t bullshit me. He didn’t try to sell me on the magic of endorphins (which I’ve never felt, anyway); instead he just broke down exercise into something I could manage.

Over the last two years, I’ve started and stopped exercising a handful of times. Currently, I’m at 22 minutes on my recumbent bicycle, and oh my gosh I hate it, but at least there’s no expectations besides getting it done. It’s just me, my bike, and the DVR.

When I’m done, I climb the stairs from the rec room and drink water, panting and sweating, exhausted and weak. The closest thing to euphoria I feel is the alleviation of guilt. Now that I did my daily exercise, I don’t need to worry about that until tomorrow.

I know I’m not the only one who hates exercise and sees it purely as a necessary evil. But sometimes, in the supercharged world where the culture is shifting more towards “RUN A MARATHON BECAUSE IT’S THE WEEKEND!”, it feels a little lonely that working out is such a challenge for me. But then again, even if I was the healthiest person on the planet… I don’t think I’d be doing 5K’s or marathons. Because, in the words of Ann Perkins:

(Parks and Recreation/NBC)

(Parks and Recreation/NBC)


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.)

happen2

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

*

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.

*

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.

happen1

“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.