October is Dysautonomia Awareness Month

Life is weird.


Somehow I managed (on the first day no-less!) to remember it's Dysautonomia Awareness Month, and I started to think about what I would do for it. A few years ago I posted a "tid-bit" for every single day in October, while other years I just change my profile picture and offer a brief summary of my story while inviting questions.

But man, this year? This year I just don't. want. to talk about it.

And I'm not sure why.

I have been managing really well lately. The cardiac rehab has changed my life drastically and I am participating in my life more than I have in years... maybe ever. But sometimes it's like, I reach a point where I'm just tired of it. Not necessarily that I'm ashamed of it and my struggle or anything like that. But, rather, that there's a sweetness in people looking at you and just not knowing.

I played soccer today. It was tough but I am so fucking grateful for it and every day I have been able to do so. I fully realize this is huge in my journey and that many have not been able to make it this far. But here I am, the first day of Dysautonomia Awareness Month, bitching about how I don't want to talk about it. I'm DOING THINGS. And all I want is to just keep doing them. I want to do them until it's no longer a fight. Until my life is entirely full of the DOING THINGS and completely without anything that one would find in awareness month posts.

But that's just not how it goes. I am fully aware of how freaking hard I have worked and how lucky I am to have that work pay-off like it has but... it is just always. going. to be there. isn't it.

Maybe that's part of why I don't want to talk about it much this month. Because it's been such a mind-F for me. Maybe, without my even realizing it, part of me was subconsciously thinking this is how it could be from now on. That this level of living would continue, this taste of life would be all there was. And then I have weeks where I get my ass kicked in exercise and I come into contact with someone who is sick and I go right back to be absolutely terrified about catching their illness. It's a realization that, no matter how great I am doing, I'm always going to have to worry. I am always going to be susceptible. I am always going to potentially lose everything all over again.

In a weird way, I think being full on in the shitter was "easier" for me to handle. When there wasn't hope. Whereas now I have been blessed with brief moments in which I haven't really had to think about it. I still always have to plan, of course... have water with me, take my meds, gauge what I'm going to do in a day... but there have been moments where I've caught myself passing as some semblance of a relatively normal human person. Where I felt free. Unburdened. Like the entire world and my future was suddenly unrolled before me, all these new opportunities—to which I had sorrowfully said goodbye years ago—suddenly there, smiling at me. Eager. Just as happy to see me again as I was in seeing them.

I don't know. None of this is making any sense. And I'm just frustrating myself more because I really am truly thankful for these past months. I'm not looking a gift horse in the mouth. I just... I just want to be seen without it, is all.

I just want to keep having these moments where I can pretend or feel that maybe it'll be okay.

But that's just not an option. It's not. My condition continues to fuck up situations left and right... new ones now, too, that I am not even close to wanting to talk about. When all I want is to close my eyes and just be the girl on the soccer field, breathing hard because of a beautiful reckless living and not because her heart feels like it's about to break her ribcage and her lungs can't remember how to work or her legs collapse because they seize up without enough oxygen.

I just want to close my eyes and be the girl who sweetly thought, for a moment, that life had finally unfolded in beautiful, glorious possibility.

Vitals Pre- and Post-Cardiac Rehab

Hahaha, remember my previous post here where I talked about all the crazy stuff I was able to do in 5 days and not die thanks to the exercise I was doing?! And then how I said, "Hopefully, it won't take me another two months before I sit down to write about [the program again]"?!

Well, at least I was right in that it didn't take me two months...

But, honestly, though I do feel a bit guilty about my slacking, I can say it's happened because I've been out like, doing stuff y'all. This summer... I'm honestly getting all verclempt just thinking about it. Aaah! Talk amongst yourselves! I'll give you a topic!

Oh geez, I just realized some of you may not even get this reference... #Imold

Oh geez, I just realized some of you may not even get this reference... #Imold

Seriously though, I'm sitting at my kitchen table almost in tears about it. I can't even begin to explain what this summer has meant to me. The fact that I've been able to play soccer three times a week in the heat of the South with people who have become like family to me... and the acceptance and understanding I've received... the growth I've gone through...

Ok, they are actual formed tears now so here's another Linda Richman/Mike Myers gif:

                                   Rhode Island. Neither a road nor an island... DISCUSS DISCUSS

                                   Rhode Island. Neither a road nor an island... DISCUSS DISCUSS

Sigh. I am just so grateful. It has been life-changing for me. It really has.

But, focus, Sarah! Give the people some concrete details! Because you know how it is! You've been on the other side listening to someone say X, Y, Z has helped them and you've laughed ruefully and bitterly!

So, yes, while experiences are important, the numbers I received when I visited my POTS doctor in August really kind of hit it home for me—that the exercise has been helping. Because while I had evidence of improvements (April wedding shenanigans, the glorious summer of soccer, etc.) it was still hard for me to believe/attribute it to the exercise. Like I said in earlier posts, I'm a bit jaded with "POTS treatments" because, hey, aren't we f'ing all at this point?

Anyhoo, when I saw my POTS doctor in January we were still trying to get me into the cardiac rehab program at the local center. At this time, I was taking Metoprolol to help control my heart-rate.

Here were my baselines (taken after lying down for three minutes, then taken after sitting for three minutes, etc.):


Supine to Sitting: heart-rate increased by 21 bpm.
Sitting to Standing: heart-rate increased by 24 bpm.

Supine: 100/58
Sitting: 99/69
Standing: 95/65

Not too shabby, right? If I remember, I drank a crap ton of water that day, so the fact that my BP wasn't in the 80/50 region like usual was pretty freaking cool.

Fast forward seven months and two days, and keep in mind this is without Metoprolol as they wanted me off of it while completing the program:


Supine to Sitting: heart-rate increased by 4 bpm.......... FOUR.
Sitting to Standing: heart-rate increased by 17 bpm........... who are you and what have you done with my heart?!

Supine: 118/55
Sitting: 109/59
Standing: 107/66


Needless to say, there was a bit of verclempt happening in the doctor's office that day, too.

Oh, and this. Lots of this:

                                                        Um... that... those numbers can't be right, can they?

                                                        Um... that... those numbers can't be right, can they?

So I don't know y'all. It's been a wild ride this year, for sure. Proceeded by 10 years of wild (mostly sedentary) rides. And it is still a fight, don't get me wrong. It's hard to get my three days a week of exercising in if I'm not chasing after a soccer ball like a rabbit after a carrot on a string. And there are still naps and brainfogs and tears but... I think... I this might be what it's like to be living again.

Levine's POTS Exercise Program: April 2017

Hi there!  I have a number of things to catch everyone up on and possibly not enough brain capacity to do it so *stretches fingers* here goes!

Last I blogged was in early April (hahaha... remember when I said I'd try to blog at the end of each week? That was a good one, right?!) and was coming down with a cold. As suspected, my conditioning changed a bit while I was on bed-rest and my body spent its energy on getting better. Luckily it didn't knock me out of commission for too long (I believe I missed only two days of rehab) and it only bumped me back a few days on my progress, which was pretty exciting. I made sure to take it very easy my first day back and not to push it, as it was difficult to gauge when I felt well enough to resume again vs trying not to hop back into it too quickly. I'm happy to say that it took me a week or so to get back to where I was prior to getting sick, which was far quicker than I expected.

Later in April something remarkable happened... I did a huge crap-ton of things in 5 days and I didn't turn into mush! The setting: me in my fantastical, wonderful, amazing, beautiful cousin's wedding which was close enough for me to drive to. The plot-twist: work blew up beforehand and a lot of the prep work fell onto me. The result: (are you ready for this jelly?!) Wednesday I ran errands for about 5 hours or so...Thursday was spent cleaning the house, packing, etc. etc., literally an all day kind of deal. Naps were included obviously, but relatively short ones...Friday drove 7 hours, hit the ground running for rehearsal and the rehearsal dinner, got to bed late after visiting with family...Saturday was the big day! Hair-did, travel to the wedding venue, hustling around to help the bride, getting dressed, going off to take pictures. Ah! I almost forgot! I had to run half a mile in flip-flops to get my cousin Peptobismal. TRUE. STORY. (And yyyeeeah, sorry to share this with the world, Trish. Loveyoumeanit!). Anyhoo, back for more photos, lovely wedding walking and standing and happy tears, food, dancing, maybe a glass or two of alcohol (I'm not at liberty to say) before staying up late talking to my brothers and then—boom—Sunday, which included waking up early for family brunch, then driving 7 hours back home AND I DIDN'T DIE.

Seriously, how the hell was ANY of that possible?

Now, I was pretty pooped the Monday getting back, and still a little bit on Tuesday. But it wasn't a crash. It felt like... an appropriate response or something. It was WEIRD.

However, I still have trouble attributing this to the program. Like, I keep thinking, "Well, maybe I would've been able to do it months ago anyway!" But I just don't think that is the case, nor do I know why I'm so hesitant to attribute my improved condition to the exercise program. I think I've probably become a skeptic—maybe even a cynic?—about anything related to treating POTS (shocking, I know...) Plus, it's just hard to see potential changes when you're inside of them, especially if they're happening incrementally. Of course, I don't think exercise has been the "cure-all" for me. Not by a flipping long shot. All two of you that read this blog will know there's a lot of stuff I've put into motion to increase my quality of life—things I have found to be just as important as the rehab. But, that said, I have to add that the effort and dedication I have put into this program has, I think, definitely paid off.

Of course, that's the kicker though right? Being able to stick with it? To find that middle road where you're pushing but not too much? To be able to understand your body enough to know if all the struggle is actually benefiting you after a couple of months or not. I know when I put myself through my own "program" 5 years ago (again, don't be stupid like me and do that) I felt like shit but, to a degree, I was able to start feeling myself getting stronger. And maybe that's the good thing about this program. Maybe I haven't been able to feel it as much because I have been doing it more slowly and more responsibly. And then it's like one day I wake up and do crazy superhuman wedding shit for 5 days that would've normally turned me into a little Carson blob on the floor.

So, that's April for you. May brought along a lot of changes as well. More specific data type ones if that's your thing. And, hopefully, it won't take me another two months before I sit down to write about it.

I hope everyone is doing OK, that there is at least some helpful information you are finding in these ramblings. And if there are any questions I will definitely do my best to answer them.

Be well!



Levine's POTS Exercise Program: Week.... uh........??

Ok, I'm going to start this off by saying sorry for being MIA the past few weeks. I've been hyper focused on rehab, as well as things on the writing front, so most of my energy has been going toward those and everything else has basically fallen a) out of my head or 2) off my radar. 

As it is, I am sick this week and all hopped up on DayQuil, so there is no certainty this post will be any form of informative but—hey!—it's not like that's stopped me before amIright?!

I get to used GIFs less sparringly when I'm sick; that's a rule I just made up.

I get to used GIFs less sparringly when I'm sick; that's a rule I just made up.

I think I left last blog saying we were going to try me with some walking to change things up and see how I did because I was progressing surprisingly well; my symptoms have been extremely consistent over the course of the 9 weeks so my PT felt hopeful about it. And, it was a little rough, but I have been able to transition to most, if not all, rehab on the treadmill. Times have changed and shortened from what they were on the recumbent bike, of course. But it is nice to be up and moving. Typically, the program has the patient go from recumbent bike (or swimming, or rowing) to stationary bike, to walking. My PT feel that because I put myself through some intense exercise 5 years ago (*NOT* recommended, by the way), I was able to help with some of my reconditioning, which has allowed me to respond so positively to this program. 

Most of the people within the POTS group at the center have had the condition for a few years. I seem to be the "veteran" of the group at being officially diagnosed in 2007. Everyone moves at their own speed and what their bodies can handle; a girl who was in the program before I got there is still kicking ass on the recumbent bike. I wondered if my having the condition longer was attributable to my response to the program, but my PT said it's usually the opposite. Usually the longer one has it, the more deconditioned they become. But she went on to say how there is really no "step-by-step" way with POTS; it's such an individual condition that affects everyone so differently. Which is one of the reasons it makes it such a pain in fricking the ass to treat (I might've said that last part). 

This GIF has absolutely nothing to do with anything, I just think we could probably use a little more Nick Miller in our lives.

This GIF has absolutely nothing to do with anything, I just think we could probably use a little more Nick Miller in our lives.

I guess I have been worried to share my progress because I do not want to imply this will happen to everyone. Nor do I want anyone to compare their progression with mine, just a I try not to compare my progression with anyone else's (there are POTS patients running marathons! I think they might secretly be sorcerers). I think it's probably a very human thing to do, though—I mean, I'm proud of where I am but there's also that part of me that's like, "Wow. How did they get to running... a mile... and then... 26 of them... in a ROW?!" 

But maybe that's the thing right there, we just have to make sure we're still proud of where we are. Whether it's trying to sit up in bed without passing out, taking a shower without getting the crap kicked out of us for the next five days, recumbent biking for 3 minutes, not puking for 24 hours, walk-crawling, or running for just 10 more seconds because—shit—we sure as hell have fought to get wherever we are, that's for damn sure. 

Anyhoo, I've taken a few days off of rehab due to my cold and, since I can decondition like a MF, that means I'll be in a different spot when I'm able get back on the horse. I'll let y'all know how that goes as this has been something I've been worried about ever since I start the program. Either way, I'll have more knowledge of what to do next time the universe thinks it's funny to give me a cold, and my period, on top of a myriad of chronic illnesses. 

Me to to the universe, only I'm slightly less bathed... 

Me to to the universe, only I'm slightly less bathed... 

In the meantime, y'all kick ass and are some of the strongest people I know. Love, S