Holiday shopping induces a kind of paralysis for me—I want to strike the perfect level of thoughtfulness and utility while finding something really well priced. (I’M SO BROKE IT HURTS.)
I hope I can relieve you of these feelings with my gift guide!
While all of these items range in price from at little as $7 to as much as $150, I want to remind you of this: the best gift you can give someone with dysautonomia is your time and patience. (And maybe throw some $3 fuzzy socks in there or a reusable water bottle. We’ll love it.)
But my point is this: we have to sideline ourselves in life because our bodies don’t cooperate. Health always comes first, even when we want to throw it to the side and just do something fun for once. Please don’t forget us, especially at the holidays.
Shopping reminder: when you use Amazon, shop through smile.amazon.com and select Dysautonomia International as your charity of choice! 6% of your total purchase price will be donated to them at no extra cost to you!
I’m really excited about this recommendation because this is the first time ever I get to offer you guys a discount exclusively through my blog. (OMG.)
At this year’s Dysautonomia International conference, I got to know Tomas Reyes, who’s the founder of Tramps Hosiery. He founded his company after a loved one developed dysautonomia and needed to wear compression stockings to help with her blood flow. Coming from the world of fashion in New York, Tomas wanted to design something way more fashion forward than the standard medical options available.
We had a ton of really interesting conversations about how dysautonomia and POTS affects life, and their company has been really generous to our community. AND! They’re offering 40% off your purchase (!!!) if you use the code dysautonothankyou!
*Make sure you know your recipient’s size before purchasing! Compression stockings are very tight!*
If I could live a life of luxury where I could drop $50 on a single candle, I would. (Looking at you, Anthropologie.)
I’m fairly certain that all of my readers are in the same boat as I am, high class candle tastes on a budget, which is why I’m a big fan of holiday scented Glade candles. Their “Tree Lighting Wonder” scent candle smells even better than a Christmas tree and has my house and bedroom smelling so good for once.
It’s an easy win, and it looks really nice, too, so it’s not an insult to give it to someone as a gift.
Throw some candy canes and a couple of these bad boys into a gift bag and bam!, you’ve got yourself a Christmas gift. (The plug-in inserts are really good, too… but giving a plug-in gives a vibe like, “hey your house stinks, get your life together.” Candles are #classy. Take it from me, Emily Post.)
The other plus to Glade candles is that I don’t find their scents overwhelming or overpowering. Obviously, if the person you’re shopping for has Mast Cell Activation Syndrome, they might need to live in a candle free/scent free home, so check with them, and see what their needs are.
A lot of us with dysautonomia suffer from painsomnia—we’re up all night with pain and discomfort and sleep later into the afternoon. This makes the short days and long nights harder, we hardly get any sunlight.
Separately, my depression worsens with the seasons and my doctors have recommended that I use light box therapy for 20 minutes every day.
I have several friends who LOVE light box therapy and thrive on the boost it gives them. For me, it’s a nice buzz while I use it (when I remember to use it… sorry, doctors), but I know it’s a good, science-backed way to offer someone someone who who struggles with the time changes.
My friends have an Amazon Echo at their house and they have it wired up perfectly.
Want to turn on the lights? Tell Alexa, the Amazon assistant, to do it. Want to listen to music? Alexa does it. Need to search for something online? Alexa does it. Want to set a timer, call someone in another room in the house with an Alexa in it, use an app, buy something on Amazon? Alexa does it.
It’s a chronically ill person’s dream come true—all of these commands can be done from the couch.
Listen. I know this sounds like a joke. And it might be to some of you. Maybe it could be a funny joke gift or White Elephant present.
But this is one of the BEST products that has ever come into my life, and when you have dysautonomia, you probably have digestive problems, and THIS HELPS by changing the way you sit on the toilet! Things just… move better.
Because let’s just be real about what happens in a bathroom sometimes: straining, discomfort, really unpleasant positions… THIS FIXES THAT NONSENSE.
So if the person you’re shopping for has been complaining about digestive problems, this is step one for them.
(Maybe don’t give it to them in front of a big group of people though, unless y’all love bathroom humor and they’re a really good sport.)
I have a growing obsession with family history. This summer I got my ancestry report done by 23 and Me and while there were zero surprises (I’m 100% European. One HUNDRED percent.), it’s really cool to trace how much of what region’s DNA I have, and compare that to my family trees I have through genealogy reports. (Thank you, FamilySearch!)
What I like about 23andMe is that they have an add on you can purchase at any time after your additional kit that will analyze your DNA sample for Health information besides basic ancestry. (And the chronically ill cannot get enough information about Health.)
The Health + Ancestry Kit is currently on sale for $149 (savings of $50). The other main DNA analysis company, Ancestry.com, does not offer a package like this.
Ah, yes. You didn’t think I was going to go another year without mentioning a FitBit, did you? It’s the dream gift for people who love tracking health data!
The most important feature of this particular model (Fitbit Charge 2), is that it tracks Heart Rate, and that’s what everyone with dysautonomia is looking for: checking in on their heart rate while exercising. Or walking. Or sitting. Or breathing.
I also particularly like this model because it can help you track sleep—the number one question I’m asked when I go to any doctor. (“How much are you sleeping?” “I don’t know, a lot?”)
It can also be synced with your phone to show you text and calendar alerts on the display which is such a convenient feature.
But even if you’re not like my family, you’ve probably been interested in one of the billion types of subscription boxes out there. They range from samplings of snacks every month to makeup samples to monthly survival boxes for the chronically ill.
I had an incident with one of my favorite doctors recently.
He’s a headstrong physician—just like I’m a headstrong patient. Despite this, we generally work together very well. When I’m sassy and sarcastic, he usually sees that as an indicator of my good health overall. (He’s right. If I’m screaming in righteous indignation about something, it means I’m feeling well.)
This fall, I haven’t been myself. The fatigue has been unreal. I’ve been sleeping over 12 hours a day, trying to make my symptoms go away through sheer force of will. My mind keeps repeating, “something’s not right”—it feels like somewhere in my body, something is very broken and is causing a total shut down from top to bottom.
I made the rounds with all of my doctors. I went to see Dr. X (name withheld) a few weeks ago, and everything went as usual, although I felt a bit more withdrawn and tired. Then came the end of the appointment.
He then proceeded to lecture (or browbeat) me for over 15 minutes about minute things from schedules and exercise and all of the ways I was doing treatment and chronic illness wrong.
None of what he said was inherently false. But everything in his delivery was wrong for me at that specific time—and as a doctor I’ve been working with for what feels like forever, I felt tremendously let down by his approach.
“Doesn’t he know me?!” I remember saying to my mom afterwards. “I always come through in the end!”
I was heartbroken and offended to have been condescended to like a child by someone who had been treating me with the respect of an adult since I was a teenager. I felt like in this one appointment, I had done something to lose not only that respect but also his confidence in me.
My doctor had preached to me all of the things I knew up, down, left, and right: get out of the house every day, eat three meals a day, drink more water, etcetera, do these things to feel better and be healthier—I could teach a class on these basics.
I wanted to shout “I know!” right in his face. “Don’t you think I’m doing these things as much as my body is allowing me?”
My mind was shouting, “I know these things, if there’s something I’m not doing, it’s because I feel so awful!”
It made me feel like he saw me as a failure. It made me feel like I was a failure because I couldn’t do the basic things to keep myself healthy.
I chewed on my doctor’s words for days. (Try, weeks.) What would have been a blip on my radar had I been in a healthier, more sound place, had me anxious, hurt, and considering new doctors.
On one hand, he was just giving me “real talk.”
On the other, he was forgetting how I operate and function as a patient and as a chronically ill individual.
I have always needed doctors to meet me halfway.
I can’t pull myself out of whatever hole I’m in by myself. When I’m in a slump, I require a boost from medical intervention. But once I get that help, I can get back into the everyday habits that keep me healthy: getting out and walking around, using light box therapy, throwing in a salad here and there.
When my doctor firmly critiqued me while at my lowest and most fragile, I couldn’t take it. I’m a person who seizes on any opportunity to blame themselves, and with a half dozen incurable chronic illnesses, my life is a wide canvas to do just that. “It’s your fault you have this!”“If you didn’t do this, you wouldn’t have this.” And now my brain added in, “Dr. X thinks it’s your fault that you’re having this symptom.”
Except after weeks of processing, I can FINALLY say to myself: who the hell cares what anyone thinks besides the people in the trenches with me? The people whose opinions I care about are the ones who actively feel my pain with me and help me get up, get out of this mess until I can do it myself. The ones who help me grow, who give me blankets, pillows, and hot chocolate when I need rest, and the ones whose critique and advice is delivered in a way that that will help me, not hinder me.
I’m sick. But I work really, really hard. And in the last few weeks, I’ve pulled myself up—thanks to a boost from medicine, therapies, loved ones, and my own hard work.
I’m not “fixed,” (it’s chronic, y’all), but a few weeks ago, I couldn’t leave the house because my body was non-functional.
Last week, I was barely at home. So we’re getting somewhere.
(Thanks, to everyone who’s been a help.)
(And we’ll see what happens with Dr. X. Thankfully, he listens to the opinions of other doctors on my team. As of now, I have what I need from physicians.)
Without getting into specifics, the last few months have been some of the hardest in my life.
I’m on the upswing right now (knock on wood, pray I don’t jinx it), but I imagine this fall has been just as difficult on my loved ones.
So this Thanksgiving, thank you to everyone in my life whose patience is unending and whose loyalty is unwavering and who still love me no matter what side of myself I reveal to them.
An extra special thank you to people who encourage me to share stories and write and try my hand at being creative (however infrequently). Thank you for making me feel like I have something worth saying.
I’ve been trying to write a post about turning 25 for weeks and it hasn’t been happening.
(By the way, I turn 25 tomorrow!)
Every year, I have a minor existential crisis before my birthday. It’s just a fun little tradition I do. (Drives my family and friends nuts, but I think they’re used to it now.) I freak out that I’m getting too old too fast, that I haven’t done enough, that I’m not good enough—but I also get excited, too.
I expect to wake up the day of my birthday every year and experience some cosmic shift in the universe where I will feel different, have the clarity I’ve been ambling after for years, finally attain maturity, and understand who I am and what my purpose is.
It hasn’t happened yet, but I’m still hoping it will on Friday morning when I wake up, because it has to at some point, right? Just statistically speaking?
my 21st birthday, the height of my maturity
I never give up hope that one day everything will just click together and make sense. I’m hanging onto the dream that one day, I can take a deep breath and say, “So that’s why.”
The last few weeks, I’ve been psyching myself out over the fact that I’m officially a quarter of a century old, as if 25 is so much more significant than 24. Although tomorrow I will be able to rent a car *AND* run for the House of Representatives. (My Congresswoman is up for reelection next year. Should I run against her? Linford 2017?)
A quarter of a century means I’m eligible to have my quarter life crisis. (Declaring you’re having one before 25 is so morbid, people lambast you when you say you’re experiencing it at 20, I learned several years ago.) And boy! The confusion of “what do I do now?” with my treatments makes me feel eligible for a crisis.
So between all of that that, a meds change I went through at the end of August, the season change affecting my POTS, my brother moving out (we miss him, even though he’s close), and going back to school—I’m a bit of a mess.
I’m experiencing the highest highs and the lowest lows.
And it’s hard for me to reach out beyond my parents and my therapist. Sometimes, even though writing is hard, it’s easier to post a long, sweeping public release on my blog than it is to text the people I love the most that I’m sincerely terrified, not just ALL CAPS NERVOUS ALL THE FEELS. I’m trying so hard to change. I’m trying so hard to learn why this is. At least I know I’m not alone in being this way. Thanks for that, Tumblr.
source: lordoftheinternet on Tumblr
Changing and growing up is the worst. And even if in the grand scheme of things, I’m still young, I’ve got plenty of time, I feel like the Big Cosmic Clock is ticking. It’s scary. And fear doesn’t mix well with chronic illness, especially when you’re predisposed to have heightened levels of adrenaline running through your body.
I’m learning. Even when I don’t want to, my therapist is holding me accountable to learn more about myself every week, even the weeks when I walk in to her office exhausted and ask her to do all the work so I don’t have to. “But what fun would that be?” she usually says back to me.
I’m choosing to have faith in the people who tell me everything’s going to be OK, even though making the choice to believe isn’t easy. Usually, when they have Ph.D.’s and M.D.’s after their names, I’m more inclined to believe them. I’m hanging in there. Therapy helps. My support system helps. Long, long baths with Bath and Body Works aromatherapy products help. Music helps. (I’ve started listening to Laura Stevenson, and she’s some kind of wonderful.)
Exactly 10 years ago, my mom took me along with her, her siblings, their spouses, and my younger cousin Zach on a 10 day cruise to the Baltics. (My dad was slated to go but had to work so I scored his ticket instead. Thanks, Dad!)
It was the vacation of a lifetime: we spent days walking through gorgeous, timeless cities, I got to try my hand at photographing old buildings, we stuffed our faces at the 24/7 all you can eat buffet in a very American fashion, I spent hours in the cruise’s pools, and it was something I will never forget or stop cherishing.
It’s also something that I’m so glad happened exactly when it did; because while my POTS was undiagnosed, I was in a good place. I was physically fit, I could manage long walks and I could survive on less than 10 hours of sleep a night.
Right now, my health is a little rocky, and sometimes I get a little down about if and when things will get better–so I hold on to the fact that, “hey, something amazing happened at exactly the right time.” I remind myself that as a teenager, even without the power of diagnosis and treatment, I was strong, had a perfect experience, and it brings me comfort when it’s hard to stay optimistic about when I’ll feel better.
Because as a teenager, I had so much strength. I’d even go so far as to say I had energy, in a POTS-y sense. The energy that lets you wake up without hitting the snooze button, that is.
Ready to steal that boat in Stockholm and claim all of Sweden for myself
Our 10 day cruise was more about exploring than relaxing. Each day was long and grueling on my body. We walked for miles and I kept going and going (not without complaining–I was 14, mind you, it was my right) but my body held up for the most part.
Tallinn, Estonia was the most unexpected dream of a city. We walked the furthest and up the most hills that day, but the view was worth it.
The prettiest view of Tallinn, the most underrated city in Europe. I’d walk up hills to see this again.
The interesting thing now is that I can look back and pin point all of the different signs of POTS. Even though I slept plenty every night, the fatigue was extreme and draining–I couldn’t understand it. I tried to fight it in the car as we drove through cities like Gdansk and St. Petersburg but I *had* to nap to keep my sanity.
This was the first photo I took in St. Petersburg–early morning with sleep still in my eyes from dozing in the car on the way to the cathedral. It was beautiful and perfect.
I remember trying to walk down steps of a museum and feeling a complete disconnect from my body–I felt like I was back on the cruise ship while it swayed with the waves but I was on solid land. I was familiar with this vertigo, it happened all the time when I was exhausted. I had my arms out on either side of me like a toddler learning to walk while I made my way down a large, red carpeted staircase. I wonder what the museum guards thought of me.
I remember the intense dehydration I’d experience–and how I was never satiated. I would fumble with foreign money, apologizing over and over as I haphazardly flung coins at cashiers in gift shops while grabbing whatever water bottles I could find (which all turned out to be seltzer.) (My apologies, all of Scandinavia!)
After our visit to the Sibelius Monument in Helsinki (that’s my aunt in the brown shirt!), I went to a gift shop and rather than buy a souvenir, I almost ran over fellow tourists in my search of hydration. I was a woman on a mission.
I also remember the crazed feelings of panic I’d get from standing around for too long. A few years ago, I noticed that I get mild to severe panic attacks in museum settings due to tachycardia from standing, the sensory overload, and overcrowding. I can’t imagine or remember what my tiny, 14-year-old brain who had NONE of this information back then felt.
I FLIPPED out while touring Peterhof, home of Peter the Great, in St. Petersburg. There were so many people, so many rooms, so many paintings–my brain, my body, my ANS, couldn’t handle it. I still managed to love it though–the insane gold rooms and overly ornate furnishings, what’s not to gush over?
There were SO many signs back then about POTS–but even through those signs, those symptoms–I was kicking POTS’ butt.
I was the most excited about being in Copenhagen. My family is fairly Danish and I researched Denmark up, down, left and right before we got there. Visiting the Amalienborg Palace was thrilling.
One day coming back from the boat from our excursion, my cousin and I were craving cheeseburgers and knew we had to get to the restaurant on the top deck before they closed at 6 to order them. Knowing it’d take too long to wait for the elevator, we ran up 10+ flights of stairs in 15 minutes before close to get them. No cheeseburger has ever tasted so good.
My designated walking shoes for the trip gave me blisters the first day I wore them so I threw them out and tackled miles of Europe in flip flops. If that’s not a feat (puns!) of the body, tell me what is.
The GORGEOUS city of Gdansk, Poland is the one where I tore my feet up. It was worth it and I’d do it again for those colorful buildings and beautiful church.
When we returned to the cruise ship every day, I went swimming and perused what the boat had to offer me. I hardly took any extra naps… aside from the ones in the car rides.
My cousin Zach and me, chillin’
When we got home from Europe, I crashed for days and when I was awake, talked about nothing else except for My Big Trip for months. (It’s 10 years later and I’m still talking about it.) (I also eagerly watched High School Musical 2 which had come out while I was overseas. Hey. Just putting the era into context for you–2007 was a magical year.)
But it was more than a really good trip–it was a huge physical accomplishment–especially now that I have the context of what my body was going through.
In a very Disney Feel Good way, I’m proud of myself for getting out there every day and walking, discovering parts of these beautiful cities–even if I did do embarrassing things like break down and cry in a train station on the last day because I couldn’t decide what I wanted to eat. (The stereotypes about girls are true–we don’t know what we want to eat. Especially when we’re 14.)
Chillin’ with Hans Christian Andersen’s Little Mermaid in Copenhagen on my last day
I was so lucky to get to visit seven different countries in just ten days–several of which I have ancestry from. I’m so lucky that my health, while not perfect (it never has been), was as good as it was for those seven days.
And yes, I highly recommend all of Scandinavia + its environs to visit. Even with POTS.
Because you can have symptoms and still have the trip of a lifetime, one that you’re nostalgic for every day, even 10 years later.