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.)
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)
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.
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.
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.
“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)
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.
I went to a spin class yesterday.
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.
Along with it being Dysautonomia Awareness Month, it’s also the middle of Invisible Illness Week.
Invisible Illness Week has a fabulous meme, 30 Things About My Invisible Illness You May Not Know. And because I miss the days of MySpace and Facebook surveys, I filled it out focusing on dysautonomia, despite having what feels like close to 30 of my own Invisible Illnesses.
If you’ve done the 30 Things survey, leave your link in the comments!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (dysautonomia)
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: Totally changing the way I think, approach things… and I EXERCISE NOW!
5. Most people assume: That if I look fine, I feel fine? I don’t actually know. However, when I’m with friends, I often have to ask them to slow down walking and to take breaks with me. I think people also don’t realize that even on my best days, I’m masking a few symptoms.
6. The hardest part about mornings are: Not hitting the snooze button and dealing with dizziness
7. My favorite medical TV show is: The Mindy Project (is that medical enough?)
8. A gadget I couldn’t live without is: Please don’t make me choose between my phone and computer, I love them both so much.
9. The hardest part about nights are: Keeping hopeless thoughts at bay when painsomnia hits
10. Each day I take __ pills & vitamins. 15 mandatory, 3 as needed
11. Regarding alternative treatments: I think people should do what works for them—we’re all experts on our own bodies and on no one else’s.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, what I have now—I don’t know what a visible illness is like, aside from wearing glasses for bad vision which feels pretty normal. I feel like I have more control over my life and my story this way, and people will generally believe you when you say “I’m going to be sick to my stomach,” invisible illness or not. (#protip)
13. Regarding working and career: I really want a career once I figure out what I’m good at. A psychic once told me I’d own my own business or be my own boss and that it’d happen before I’m 30 and then asked me for help with her iPhone. My #1 priority in life is having health care, so we’ll see how that works into my career goals.
14. People would be surprised to know: I tend to tell people everything, there’s not much mystery in my life (case in point this blog). Maybe that I didn’t learn how to take pills until I was prescribed them at age 10/11.
15. The hardest thing to accept about my new reality has been: That there’s no going back now.
16. Something I never thought I could do with my illness that I did was: Force myself to exercise.
17. The commercials about my illness: Don’t exist yet.
18. Something I really miss doing since I was diagnosed is: I miss my old job sometimes–I went on medical leave when I got a series of flareups and decided to officially leave when I was diagnosed and knew that standing all day just wouldn’t be a good health decision for me.
19. It was really hard to have to give up: the idea of missing out on some rites of passage—thankfully I found some ways to work it out. 🙂
20. A new hobby I have taken up since my diagnosis is: Facebook stalking POTS friends, window shopping on Etsy for Awareness jewelry (especially zebra bracelets)
21. If I could have one day of feeling normal again I would: go to a concert and see what it feels like to stand for an extended period of time as a normal person, run as far as I could just to see what it’s like
22. My illness has taught me: how to entertain myself in the waiting room at various doctor’s offices
23. Want to know a secret? One thing people say that gets under my skin is: when people tell me that I’ll like exercise one day and that the endorphins will kick in. I’m never going to like exercise. I have never felt endorphins in my entire life.
24. But I love it when people: validate me. Tell me, “yeah, that sucks!” and send me pictures of koalas, the dreamboat musicians from Jukebox the Ghost, and also remind me that everything’s going to be ok.
25. My favorite motto, scripture, quote that gets me through tough times is: “You got this.”
26. When someone is diagnosed I’d like to tell them: “Oh my gosh this SUCKS but you aren’t alone! You can do this and let me hug you and now you get to eat all the chips you want!”
27. Something that has surprised me about living with an illness is: for me, it became another member of the family. My parents sometimes discuss my doctor’s appointments with each other like I’m not even in the room.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring me food and check up on me. Making meals is so exhausting during a flareup and having meals made for you (or even microwaved for you) when every bone in your body is aching is such a luxury.
29. I’m involved with Invisible Illness Week because: There are SO. MANY. INVISIBLE ILLNESSES. (All of my illnesses are!) Coming forward and saying “I have an invisible illness” can put yourself at the scrutiny of others as they wrinkle their brows and say “prove it.” But there’s safety in numbers. We’re like a giant phalanx of experiences and stories. (Sorry. I just had the phalanx imagery going on in my mind today.)
30. The fact that you read this list makes me feel:
How do you even write the first entry for a blog?
Goals? Mission statement? Two truths and a lie?
I originally wanted to start a blog because a bunch of adults* asked me “so, do you a have a blog?” this summer when I talked about possible future career goals and my experience with dysautonomia/POTS. (*I know that I’m “technically” an adult, but these were real adults, with their own health insurance plans, 401Ks and wills.) The idea resonated with me and I couldn’t shake it.
As far as other goals, they’re pretty standard (and yes, why not share my hopes and dreams with you?)—
- to reaffirm a million times to anyone with dysautonomia that their experiences are real and valid
- to give people without dysautonomia a glimpse into what life is like when their autonomic nervous systems goes haywire
- to give me yet another place to work out some of my feelings because writing is a good time
- to be another voice to raise awareness about dysautonomia
- to share as many cool water bottles, salt shakers, pill containers, and any other cool dysautonomia gear items as I can find
And one day, if I’m lucky, maybe I can make this as powerful and glamorous as Stephen Colbert’s lifestyle brand, Covetton House.
With goals out of the way—you can read my overly comprehensive diagnosis story, see pictures of my dogs on my about me page, and follow me on Twitter for random musings and blog updates.
So let’s get vulnerable! Let’s share stories! Let’s barrel through the stigma, head first, even though it’s scary. Let’s have as much fun as possible. And thanks but no thanks, dysautonomia.
Oh, and most importantly!
Happy Dysautonomia Awareness Month!