I started seeing my cardiologist in the spring of 2014.
When we first started working together, he wanted to see me ALL the time.
I was in there every two weeks for the first summer. He loved taking my blood (and my pee!), tinkering with my meds, giving me EKGs, doing all sorts of autonomic tests and watching what happened to the blood in my body when I stood for different periods of time.
Dr. A is the most thorough doctor I’ve ever had.
Over the last two years, we’ve changed the frequency of our appointments. I’ve never gone more than 3 months without seeing him or his wife, another cardiologist (They’re married and they practice highly specialized cardiology together and living the dream together? DOES IT GET MORE ROMANTIC?!) —
Since the initial “we need to learn everything about your body” intake period that lasted a full summer, I’ve seen them every six weeks. We’ve talked about my POTS, my EDS, how it interacts with my depression, my daily routines, my goals, my failures, my triumphs, everything. Their nurses and physicians assistants take the most extensive notes and patient histories that I’m fearful of how many gigabytes of data their servers are storing.
Yesterday, I went in for an appointment and my numbers are great. I still get splotchy and sweaty and thirsty and complain “GET ME A CHAIR” after two minutes of standing, but my heart rate no longer spikes 40 BPM from getting up. It only rises 20 BPM.
I got to go off of one of my meds. I didn’t ask to change anything else and my doctor reinforced, “yes, you definitely need to stay on Midodrine, you really need it” because of my blood’s propensity for pooling in my limbs.
But as she left (I saw Dr. A’s wife yesterday) (and not before ordering a 24-hour Holter Monitor, just because it’s good to do them), she said she’d see me in six months.
Half a year from now.
Even though feeling well should be the indicator of progress, not arbitrary numbers—that “see you in six months” was the arbitrary number that felt like the marker of growth.
I’m far from recovered, but I’m at a place where I can take care of myself, independent of my doctor. I’m stable. My aches and pains are unpredictable, yes, but they’re not out of control to the point where I feel like I need to go to a hospital. My nausea pops up a lot, sure, but I haven’t puked in a while. I get dizzy a lot, but I haven’t felt like I’ve been stuck in spinning teacups for quite some time.
And that is great.
I’m not in too much pain to the point where I can’t sleep. I’m not choking on food when I eat. And some days I have enough energy to put my laundry away.
So knock on wood, pray I don’t jinx anything, do all of those things to ensure that this doesn’t change.
Because seeing numbers change like that is pretty cool.
I’ve been working my way up to 30 minutes of exercising for nearly three years. I’ve started and stopped exercising regularly dozens of times, but I have finally worked my way up to 30 minutes regularly.
They say that exercise is usually a feat of mind over matter, and in many ways that’s true–because you’re forcing yourself to engage in physical torture.
These are 30 thoughts I regularly have when I exercise on my recumbent bicycle (five days a week!)
- Let’s do this. Let’s get this done.
- Oh my gosh, my throat is on fire. Drink some water ASAP.
- Big mistake, I feel like I’m going to vomit.
- At least I’m wearing these cute shoes. Mom really shelled out for ‘em.
- Mom’s great, but exercising sure isn’t. Exercising is the worst. Why do I keep doing it? (re-think this thought x15)
- Because the doctor said so.
- Ugh, why do I keep giving into that master manipulator? (re-think this thought x15)
- More like that team of master manipulators… all of them are convinced this is good for me. They’re all evil. Them and their medical degrees. And books. And journal articles. And presentations. And scientific trials.
- Hey, am I done yet?
- FIVE MINUTES? I’VE ONLY DONE FIVE MINUTES OF THIS?!?!
- OK, calm down. Turn on the TV. Find something good.
- Ooh, trashy daytime TV. Is E! always running a Keeping Up With the Kardashians marathon?
- Looks like it.
- Uh oh, here comes the dizziness. Hang on to the bike handlebars.
- I’m like Liza Minnelli in Arrested Development. Or just Liza Minnelli period.
- Oh cool, blurry vision. That’s a nice bonus.
- I wonder what shape the sweat on my back is making. Maybe I can make a Rorshach test out of it.
- Nah, too much work. Too many creative endeavors. I’m a busy girl.
- I need something, but I don’t know what.
- No, I know. The battle cry of my people: Must. Consume. Salt.
- Chips and salsa are an excellent source of salt. Dr. L said so. I should go eat that when this is over.
- Is this over yet?
- I’ll take a Snapchat to see.
- WOAH, BAD IDEA. DO NOT SEND THAT TO ANYONE. They don’t need to have their day ruined.
- I’ll be done with this so soon. This will be over so soon. Just hold on. Keep going. Keep breathing. Because THIS IS NEVER GOING TO END.
- NOPE. ROGUE THOUGHTS. WATCH THE TRASHY TELEVISION. DON’T PAY ATTENTION TO THE TIME.
- KEEP UP WITH THOSE KARDASHIANS, SHANNON. Or better yet, watch something outrageously delicious and unhealthy The Pioneer Woman makes and dream of how yummy it is. That’s what daytime television is for.
- YOU CAN DO THIS I SWEAR YOU CAN YOU’VE DONE IT BEFORE.
- Hey, I wonder if I can get my mom to buy me some new yoga pants?
- AND DONE. DONE. NOW I HAVE 23.5 HOURS OF FREEDOM. Time to lay down and chill.
I got a really exciting text message last week.
One of my best friends got free tickets to see Fall Out Boy at her college. I was envious and called her names—that’s how we roll—and then she said “so are you free on Friday?”
I took back all of the names I called her immediately.
I was excited and my 7th grade soul started singing all of my favorite Fall Out Boy songs. Because AAAAAAM I MORE THAN YOU BARGAINED FOR YEEEEEEEEEET?
I told her I had to talk to my mom, which also felt very 7th grade, but it was true—I needed a sounding board for figuring out if I could handle going to a concert. I started going through all of the logistics.
Could I handle the travel?
I would have to travel about two hours to get to my friend’s place. Even if someone drove me there and I could sleep in the car, travel takes a lot out of me. It’s disorienting and draining. There aren’t many positions in a car I can get in to maximize blood flow. I can’t stop and jump up and down every now and then if I need to help get blood moving around to my body.
Could I handle the social stress?
I love my best friends more than anything and my closest friends and I have gotten to the point where we can communicate in grunts and sighs and TV quotes. However, she’s not the only person I’d probably encounter. She has roommates, who are super nice, but I don’t have an established rapport with them. That’s a stressor when you have anxiety, especially that of the social variety.
In addition to that, we’d be at a concert. We’d be two people surrounded by a crowd full of humans. We wouldn’t necessarily have to talk to them, but they’d be all around us. That’s enough to make anyone want to pull inward.
Could I handle a night away from home?
I am the princess from The Princess and the Pea. I wish I could be super chill and easy going, but I am the pickiest person in the world when it comes to beds. I get terrible hip pain when I sleep on any bed that isn’t mine and have to load up on ibuprofen to dull the ache the morning after.
I had to consider if I’d have enough energy over the weekend to handle the pain of sleeping in a bed that wasn’t mine because coping with pain requires a tremendous amount of energy.
(Side note: my friends are angels. They will give up their beds so I can have the comfy ones and sleep on floors for me if their couches aren’t available. I want to cry thinking about it because I am the luckiest.)
Could I handle a concert? (the biggest question)
I haven’t been to a concert in maybe a year.
When I’ve been at my healthiest and most fit, I have thought that concerts were going to be the end of me. It’s a strange dichotomy to be in heaven in the presence of the musicians who are your idols as they performing the songs that are the soundtrack to your favorite memories while your body feels like it’s going into shutdown; but that’s just how it goes. You’re smiling, in awe of how you can be in so much bliss and so much agony at the same time.
Most of the concerts/shows I’ve been to are smaller ones. I’ve been familiar with the venues and have known that they have seating available. They’ve been close to home, close to a safe place to rest. And what comforts me most is that if something happened to me—maybe if I fainted or had an incident—I’d be close to my doctors.
This is where I had to think hardest. I couldn’t even remember the last concert I’d been to. If I went to this particular concert, this would be jumping into a BIG one. I’d be putting a lot of responsibility on my friend to look after me: if someone went wrong, it’d be all on her to take care of me until my parents could get me. I also considered the fact that I might even have to leave her during parts of the show to rest, which is a huge bummer—when you bring a friend, you want to be with them the whole time.
I would be standing for hours. That could mean sweating for hours, aching for hours, cramping for hours. It would turn into a psychological game as most pain does—can you force yourself to keep enduring it? Can you ignore the pain to get through to the fun? Or will the pain win out?
I came to the conclusion that I should stay home. Jumping into this would be too much—currently, I’m not at a good health level to take this type of adventure on. If the circumstances were different—if I didn’t have to travel to the show, maybe I could do it. If it was a band with low key music rather than the upbeat dance-y music that makes everyone want to jump up and down for three hours, maybe I could handle it. But this wasn’t the right one. It wasn’t the right time.
It totally broke my heart, especially the 7th grade heart that will always beat inside me ferociously. But I had to make the decision that was best for my health, even if was a huge bummer.
There will be other shows, there will be other opportunities. But what matters most is I have a super sweet friend who understands why I had to say no and that I can feel good about my decision making process because I know it’s in my best interest.
I’m one of almost 60% of Americans on prescription medication. I started taking daily prescriptions at the age of 10 after a summer spent in excruciating and paralyzing stomach pain. I lost 20 lbs in three months refusing to eat for fear of the stomach cramping returning. Medicine is what gave me my life back. I could eat again. I could leave the house again. I could sleep through the night again.
Over the course of the next 13 years, I’ve developed more illnesses and have been put on more medications. Currently, I take 15 pills a day. There are some medications I like more than others–but I am the one that makes the decision about what goes into my body every morning and evening.
Being responsible for putting these powerful chemicals into your body every day teaches you a lot–especially when you do so for a long period of time. These are just a handful of the things that you learn.
There are no quick fixes
If there’s a magic cure-all pill, sign me up. But every medication I’m aware of exists to neutralize the extremes in your life. Whether it’s pain, mood, sleep, whatever, it helps regulate you to a place where you can get some work done.
When I’m in chronic pain with out of control tachycardia and mood swings, there’s no way I can exercise or use the tools I learned in therapy to help me navigate my emotions.
But when I’m on a beta blocker that makes my heart beat a bit more normally and an anti-depressant that makes me feel more like myself, I can get out of bed in the morning, I can get on my exercise bike and I can self-talk my way through stressful situations later.
And speaking of quick, nothing moves quickly in the world of pharmaceuticals. I was handed a prescription once and told, “you’ll probably feel better in about three to four weeks.” Having to wait a month for the potential of feeling better is rough–but it’s something you learn to get used to.
Side effects will annoy you like none other
You will gain weight. You will lose weight. Something weird will happen to your skin–you’ll get acne, or your acne will clear up, or your skin will dry up or maybe you’ll get hives or maybe everything will stay the same. Luck of the draw. You’ll start symptom tracking all the time. Is this a side effect, is this a symptom of the illness I have or is this just being a human being?
The daunting list of side effects at the end of every medication commercial would make anyone think twice about taking something, but there are plenty of meds out there whose only effects are the intended ones. And using the patience you learned from “no such things as quick fixes,” you’ll learn how to find the right medication for your body and your conditions.
You will bargain with your doctor
Sometimes you’ll agree to try medication you don’t want to take for the purpose of “gathering data.” You and your doctor will engage in a dialogue about what you both believe is best. You might hate the medication you’re on, but you take it for a while because you want to prove it’s not right for you.
This is a part of the scientific process. This is a part of having a working relationship with your doctor, if you’re lucky. If you give a little, they’ll give a little.
You will get really excited shopping for pill containers
You’ll have favorite pill containers. They’re reliable, they don’t pop open when they shouldn’t and they’re the right size, especially for travel and for your nightstand or whatever.
You’ll lose your favorite one day. It’ll be devastating. You’ll grieve. And one day, you’ll find an exact replica in a store. You’ll buy it in bulk, you never want to relive the same pain of losing it again. But in the time where you didn’t have your Beloved Pill Container, you learned that there are a few cool options out there. You became a pill container connoisseur. You like having a variety, and it’s not like they go unused.
You’re obsessed. But it’s OK, because at least you always make good use of them.
Setting up your pills every week feels like it takes longer and longer
You’ve been doing this every week, and even though you have a method down, whether it’s by alphabet or by class of medicine or by doctor or by color or by WHATEVER, it feels like it takes longer every week. WHY does putting pills into compartments take so long?
There’s no good answer. It’s a time vacuum. But take the time to do it right, or else there are dire consequences.
Everyone has an opinion that needs sharing, NOW
On the topic of medication, everyone is suddenly a doctor, holistic healer, pharmacist and a politician. They can’t pronounce what you take or what illness you have but they have a million and six opinions they want to shove down your throat instead of that pill. Because God forbid you practice autonomy over that body of yours! Don’t you know that rat poison tablet created by Big Pharma is all a part of a scheme to give you cancer and destroy the palm trees in the rainforest?
I’ve heard it all before, I’ve heard it from people I’ve just met who have seen my pill case, I’ve heard it from my friends’ parents and even my high school guidance counselor as a teenager. But their opinions don’t matter. I much prefer those of my doctors.
If you go through withdrawal, you’ll be filled with understanding and empathy for individuals in all kinds of circumstances
Despite your dutiful planning and organizing of medication, one day, you will screw up and run out. And you’ll call your doctor and they’ll be out of the office and won’t call in a refill for you until they can see you next, or all of the pharmacies in the area will be out of your medication and can’t get you a refill until Tuesday… and so on. At some point in your life, you WILL go through withdrawal, and it WILL suck.
Withdrawal is different for different types of medications, but the underlying warning for all of them is this: even though it’ll happen to everyone at some point, avoid it at all costs. It sucks. It’s scary, it’s painful, it’s messy. You will treat the people you care about the most how you feel (like garbage), and you will spend the days after praying that they love you enough to forgive you. But because they love you, they probably will. And they’ll encourage you and help you to get your pills organized.
You get to know the staff at your local pharmacy
Because sometimes you want to go where everybody knows your name, birthday and copays.
You will become acquainted with the taste of dissolving pills
There’s always that one medication that dissolves a little too quickly, or maybe you’ll have an incident where you accidentally bite down on a pill forgetting it’s in your mouth and thinking it’s a mint.
You’ll never make that mistake again because the taste of that horror will never leave your memory. Words can’t do it justice.
People will ask to buy your meds
Special shout out to everyone on ADHD medication: this one happens to you a lot.
People will find out what you take and and try to buy it off of you. They think a prescription for Adderall or Focalin or whatever it is they want entitles you to a never-ending supply of what you’re on. That, or they think that skipping a day won’t mess you up. (Spoiler alert for anyone not in the know: skipping your meds will mess you up, BIG TIME.) They don’t understand what you go through with your illnesses, they don’t understand the purpose of medication: to level the playing field to your well counterparts.
You know this truth, but not everyone else does: medication is supposed to give you back what illness has taken, not elevate you above others or give you a cheap high.
Your day doesn’t start or end without your meds
You start and end your day where your medication is. If you keep it with you at all times, you have some freedom. But if your meds are at home, you have to be at home. There are no surprise sleepovers without your pills. Staying out late gets hard because maybe the meds you had to take a 10 PM make you beyond drowsy.
It’s not all bad though, because it provides structure. Take your meds, eat breakfast. Take your meds, get in bed, go to sleep. Those are the bookends of your day. Consistency gives your balance where it might not otherwise exist.
Everything about dysautonomia sucks, plain and simple. But brain fog is one of the worst aspects because it distorts your reality. What can you rely on when you can’t rely on your thinking?
I underwent a new treatment for my depression recently (I’ll write all about it soon). Since treatment, I’ve had several moments of striking clear and vivid thinking that have shown me how I’ve been wandering around in varying degrees of brain fog for years, whether it be from dysautonomia or depression.
While I can’t discern whether my brain fog is from dysautonomia or depression at any given moment, the fact is, I have it. Until you’ve experienced the unreliability of your thinking, you probably won’t get it. But I want to help you try.
Brain fog is when you have read the same sentence five times and it still doesn’t make sense. You think about how to break the sentence down so you can comprehend it. You look at each word individually. You see them all separately. You can read each word just fine, but you can’t string them together. You work on putting together a couple of words—maybe “they went” and “the car” but your brain can’t put the pieces together. It’s not working. This post is unreadable when brain fog is present.
Brain fog is when you learn someone’s face and name and forget them both instantly. The details of the conversation you’re having fade away. You try to catch up on what they’re saying and what they look like as they talk, even as you study their face. They ask you something. Wait, what? Who are you? What is this?
Brain fog is when you say something and immediately pause, look at someone, and ask “what did I just say?” because you have no idea what words just came out of your mouth. Hopefully, it’s something very similar to what you intended. Sometimes, you don’t even remember what you were trying to say.
Brain fog is when you are asked a question, you think hard about the answer, you open your mouth and the answer disappears. You pause, you try to speak as though that will bring the answer back and ask them to repeat the question. You try to think. Nothing. Blank. Where did it go? Where did the thoughts go?
Brain fog is when you can’t remember what you did that day. You know you did something. You must have done something. But there’s nothing to be remembered. What happened?
Brain fog makes you doubt your intelligence. You know in your heart that you know things but your brain is actively betraying you. You can’t even take the steps to calmly self-talk your way out of this because the fog is too thick—you can’t remind yourself of your strengths and your accomplishments because no thoughts are getting through. All of them are getting lost. You can form some sentences, but not others. Why is this so hard? You must be stupid, you decide. That’s the only logical explanation your brain will let you come up with.
Sometimes brain fog lasts a few minutes. Sometimes an hour. And sometimes it lasts days. You do everything you can to break through the haze. You drink lots of water. You exercise. You get eight hours of sleep. You eat healthy meals. You can think perfectly fine sometimes but when you try to talk, you’re totally tongue tied.
Thank every higher power for those few moments of levity when brain fog is funny—the good days when the world isn’t so heavy and being tongue tied is hilarious and not finding the right words isn’t frustrating because there’s no rush to express yourself—there’s plenty of time. Those days don’t come by often, but they help get you by.