almost a day in the life

This has been in my drafts for a while because I never got around to finishing it, but I’m going to post it anyway. I typed this up super late at night, when my sarcasm is typically at its strongest. It was meant to chronicle a daily routine in my shoes, but, like I said, I didn’t finish it.

So many people outside of the chronic illness community think I live some kind of glamorous life where I stay home and watch Netflix 24/7, without the stress of bills and other adult responsibilities. Though this may be true, it’s anything but glamorous or stress-free. Allow me to try to explain a typical day in my compression socks…

Imagine you’re me. You wake up at 12:30-1:00 P.M. after a long night of tossing and turning, waking every hour on the hour.

Oh, the joys of insomnia and sleep apnea. What’s that? You have a prescription for that? Wrong! You ran out of that two days ago and don’t see your doctor for another three weeks. Ask them to call in a refill to your local pharmacy? No can do! Your sleep medication is considered a narcotic, so you have to physically pick up the prescription from your doctor’s office, which is over an hour away from your home. You don’t think it’s that bad of a drive? Are you forgetting about your motion sickness issues? Any drive longer than five minutes is fair game these days, my friend.

So, you’ve woken up. What’s the first thing you do? Stretch, of course. But wait, you can’t do that, because one wrong angle and your shoulders will be out of their sockets. Bummer. You reach over to the water bottle you keep by your bed at all times because you dehydrate faster with POTS, taking great care not to overextend your arm (again: shoulders need to stay in their sockets). You take a sip. Ah, the sore throat you had from GERD upon waking up is going away. Nice. Oh, but wait, now you’re nauseous because you took a sip of water! You lay in bed for another half-hour to an hour because restful sleep? What’s that? Some kind of sick joke, is what that is…

After checking your social media and some e-mails, you’re ready to attempt to get out of bed. Slowly, you lift yourself into a reclined position against your pillows and then you wait for your heart to calm the heck down because it gets excited over every little thing, making you out of breath and dizzy. Especially after being horizontal for so long while you almost-sort-of slept. Your nausea has hopefully died down without the miracle drug that is Zofran, so you take another sip of water. No nausea! Fantastic. You swing your legs over the edge of your bed. Here comes that dizziness again! With POTS, gravity is not your friend. Blood stays at your feet instead of circulating back up to the rest of your body, like your heart and brain. You wait a second for your vision to clear, then grab your compression socks. Be super careful pulling these suckers on because it is very easy to dislocate a finger or two. Ah, the blood is circulating again and life is grand.


Hello From the Other Side


Photo found on Unsplash. [Two yellow coffee mugs atop matching yellow saucers. Rounded sunglasses lay folded in between them. Across from the sunglasses is a picture frame with the quote, “Inhale the future, exhale the past,” in all caps. Everything is on top of a dark brown wooden table.]

As I’m typing this, it’s Thursday, June 22. You’ll probably be reading this post next week, in which case I’ve already completed the 24 hour pee sample and started on the two beta blockers Dr. D prescribed me last week. Good for me!

Yesterday, I went to the hematologist. The appointment was for nine in the morning, so my mom and I stayed in a nearby hotel the night before. That hotel, while not the worst case of inaccessibility I’ve ever seen (Waldorf Astoria, I’m lookin’ at you!), was still pretty inaccessible. I made a thread all about it on Twitter.

Thankfully, I was up to walking, but what about people who don’t have that luxury? Not everyone is able to be able to walk part-time. So many business owners do the bare minimum to pass inspection, and then say, “Fuck it, this is fine.” No, it’s not fine. Check your damn privilege. Ableism exists. Accessibility is still a huge problem. Do! better!

Anyway, that’s not even why we’re here. We’re here to talk about the appointment. The drive up there went smoothly. (Seriously, Zofran, I love you.) I feel bad for the person that checked us into the hotel. He was being friendly and asked what brought us to their town, and my mom told him a doctor appointment, and I’m pretty sure his first thought was that I’m terminally ill. His smile disappeared, his voice became quiet, and he did that head turning thing that healthy people always do when they find out I’m sick. That look that screams, “But she’s so young! Life isn’t fair! How does she cope?!” I wanted to console him, but I was foggy and didn’t know what to say, so we just left the lobby to go to the elevator (see above tweets).

The next morning, I was thanking our past selves for deciding to stay in a hotel because knowing the hospital we were going to was only ten minutes away was a huge game changer. I have anxiety before trips because of my issues with motion sickness, and when I woke up that morning, I was almost completely okay. Yes, I was fatigued and admittedly a little nauseous and dizzy, but it wasn’t due to anxiety, so I’m calling it a win.

The appointment itself went smoothly. We waited a while in the exam room for the doctor to see me, but other than that I don’t have any complaints. Dr. F was nice and he explained everything he was testing for in a way that we could understand it. I found myself comparing this experience to Dr. D, the new POTS specialist I’m trying out. First of all, Dr. F’s office was very organized, but I suppose that could be because he’s a part of a hospital and Dr. D is not. I didn’t feel rushed or bombarded with a ton of information even though there was plenty to cover, unlike with Dr. D. He answered our questions, listened to what we had to say, and explained what I had to do for each test. All unlike Dr. D. If Dr. F were a POTS specialist, I would be set.

After the appointment, I went to LabCorp because, like I’ve said before, doctors are always asking for my blood. I was also given the materials to complete a 24 hour urine sample at home, starting the next day. B-e-a-utiful. If you don’t know what that means, basically every time I pee (except the first time that day), I have to put it in the sample container and then drop it off at a local LabCorp office 24 hours later. I don’t know how much pee other people are producing, but there’s no way in hell I’m filling that entire jug.

During this test, Dr. F said it’s best to be in a Mast Cell flare (it’s one of the things he’s testing for), so I got some of my trigger foods and I’ve been eating those since I woke up. Of course, on the day that I need pineapple and mango to make my mouth itchy, it’s not doing it… The best part is, he said it may not even show up and we may have to do it again. Fantastic. Loving life.

I was also supposed to start Midodrine and Propranolol today, but I fell back asleep right after my alarm woke me up because the past couple of weeks finally caught up to me. Trying again tomorrow. I’m typing this post in advance because I don’t know how those medications are going to mess with my symptoms and I want to recover from the past two weeks. If you want to know how everything’s going, feel free to follow my Twitter! I’ve been super active on there lately.

May Goodreads Reading Wrap-Up

January | February | March | April

Disclaimer: I received Wish Me Home for free from NetGalley in exchange for an honest, unbiased review.

Wish Me home by Kay Bratt

Wish Me Home book cover. A woman and her dog are sitting on a boardwalk looking out at the sun shining just over the ocean.

Title: Wish Me Home
Author: Kay Bratt
Genre: Contemporary,
Average Rating: 4.25/5 stars
My Rating: 4 stars
Publication Date: March 21, 2017

Goodreads Description:
In her first work of contemporary women’s fiction, bestselling author Kay Bratt draws on her own life experiences to create a raw, yet inescapably warm, novel about friendship and a wary heart’s unexpected capacity to love.

A hungry, stray dog is the last thing Cara Butter needs. Stranded in Georgia with only her backpack and a few dwindling dollars, she already has too much baggage. Like her twin sister, Hana, who has broken Cara’s heart one too many times. After a lifetime of family troubles, and bouncing from one foster home to another, Cara decides to leave it all behind and strike out alone—on foot.

Cara sets off to Florida to see the home of her literary hero, Ernest Hemingway, accompanied only by Hemi, the stray dog who proves to be the perfect travel companion. But the harrowing trip takes unexpected turns as strangers become friends who make her question everything, and Cara finds that as the journey unfolds, so does her life—in ways she could never imagine.”

My Thoughts:
I’m still not entirely sure how I feel about Wish Me Home. Cara’s character is complex. In the beginning, I couldn’t find a way to relate to her personality, and found her overdramatic with a tendency to state the obvious. However, as the story went on and her journey to Key West progressed, she grew on me.

As for the story itself, I liked it. Kind of Lifetime movie-ish, kind of too coincidental and cheesy at times… Once Cara reaches the Hadley House, I ended up really getting into the story. So 4 stars instead of 3. I was going to give it a 3 because the writing was awkward, especially in the dialogue, and the word “had” was used about three hundred times. However, if you can get passed that, I think you’ll enjoy this story.

What Just Happened?

Trigger Warning: Emetophobia (words, not images)


Photo found on Unsplash. [View from the passenger’s side of a car looking out onto the highway.]

Y’all, I don’t even know where to begin. I had two doctor appointments this week. One was a regular checkup with my primary doctor to get some more Zofran and a refill on my sleep medication. The other was my first appointment with the new POTS specialist. Fasten your seat belts, it’s going to be a bumpy night.

Tuesday: Primary Doctor

Before I even got in the shower (I was going to say the night before, but it was more like 5 A.M.), I was exhausted, lightheaded, and definitely developing a migraine. However, I promised I wasn’t going to cancel these next few appointments, so I powered through the shower, changed my sheets, and collapsed into bed until I finally fell asleep three hours later, at eight in the morning. My mom came into my room at around 1:30 to wake me up, but she didn’t really have to because I’d only gotten a few hours of sleep before I was wide awake again.

It took me another hour until I was able to lift my head off of my pillow without the room spinning. Finally, I got out of bed, went to the dining room where my mom was preparing paperwork, and had a hard boiled egg. I knew this wasn’t a good idea before a car ride, but I ate it anyway and continued getting ready to leave. During my last ER visit, the doctor prescribed a small amount of dissolvable Zofran. I’d never tried that kind before, but it was all I had, so I took it and then we left to pick up my grandma down the street. Before we even got out of the neighborhood, I felt nauseous and dizzy. Right then and there, I knew this trip was going to suck.

We pulled over multiple times because I felt like I was going to puke, and when nothing happened and the nausea was still there, I broke down crying. I don’t usually let myself do that, especially in front of other people (even if those other people are my mom and grandma), but, in that moment, I couldn’t take it anymore. I repeated, “This sucks,” until I could bring myself to stop crying. And it does. It sucks. I’ve had motion sickness for as long as I can remember. Since developing POTS, however, it’s gotten much worse. It’s gotten to the point where I have anxiety before trips because I’m afraid I’m going to vomit the entire way like I’ve done so many times in the past. The anxiety only makes my nausea worse. It’s a vicious cycle.

I pulled myself together and we continued on to New York, where my appointment was.

Until we had to stop again because this time I really did have to vomit.

Normally I would feel better, but I didn’t have anything left in my stomach and I knew if we stopped for food, we’d be late, and I was not about to be turned away for being late after this car ride from hell. So I tried to make it until we got to my doctor’s office. Emphasis on tried. Let’s fast-forward past the three more times I vomited, to the actual appointment.

There’s still nothing in my stomach at this point aside from a couple of saltine crackers their staff found for me. I was weak, nauseous, and dizzy, so I let my mom and my grandma do most of the talking. He looked over my blood work and EKG from the ER visit, told me everything looked fine, and then went on to tell me that there was nothing he could really do as far as POTS goes because he doesn’t know enough about it to treat it. Though we were a little disappointed, we also kind of expected as much. He prescribed me my meds and the rest of the appointment was spent catching up. (I should probably mention he’s an old family friend, dating back to before I was born.)

We grabbed a bite to eat at a fancy-looking diner, where I had two slices of cucumber, half a piece of bread, six french fries, and the tiniest bite of a chicken finger. throws confetti Gastroparesis!

We stopped by our local grocery store back in New Jersey to pick up my meds and finally went home. The next day was spent resting while catching up on TV shows I’ve missed and hanging out with Milo, who was so happy I was home that he didn’t leave my side.

Thursday: POTS Specialist

If I’m being honest, I’m not 100% sure what happened during that appointment. Getting there, I’d taken the tablet form of Zofran, so aside from a small bit of nausea, I was fine. The waiting room was really nice compared to other waiting rooms. There were two large fish tanks, a scary-looking polar bear, and Greek paintings and statues scattered around the place. Oh, I didn’t even mention the chairs! My grandma described them as ornate dining chairs. Not to mention it smelled like a hotel lobby instead of a doctor’s office. I loved this place already.

I sign in, fill out the new patient form, give them my insurance and co-pay, and sit back down. This was the first appointment, aside from the visit to the ER, where I filled out my own paperwork now that I’m over eighteen. (We’d taken a bit of a break from doctors while we figured out our next move since I was aging out of pediatrics.) I was excited!

What I found odd was there was no section for family history or previous diagnoses. Though I mentioned during the appointment my EDS diagnosis, insomnia, and gastroparesis, he doesn’t know I have early onset arthritis or sleep apnea. We’ll get to that in a second.

I was taken to a room to do the usual height, weight, blood pressure, EKG, whatever, exam, and then moved to the real exam room (that doubled as an office for one of the doctors). Here’s where things got interesting. Dr. D was waiting for me in the room, which almost never happens, and within two minutes I think I met just about everybody else that worked in the office, as well. They were coming in, going out, calling other people in, ordering tests and prescribing meds so fast I couldn’t even keep up. According to Dr. D, my previous POTS specialist dropped the ball. He found it shocking I was never put on a beta blocker, which I always thought was weird, too, and put me on Midodrine and Propranolol. He told me my body’s going to hate it for the first six weeks, but after that we should see an improvement. Needless to say I’m not looking forward to it, but if it’s going to help…

Dr. D asked about other diagnoses and medications I’ve already tried, but he would move on to the next subject so fast, I couldn’t give him my full history. We couldn’t keep up. For example, while he was leading us out of the room at the end of the appointment, he mentioned very briefly what type of POTS I had, but I wasn’t out of the room yet so I couldn’t hear him, and when I went to ask him to repeat it, he was already gone. Sometimes it seemed like he was finishing sentences he didn’t begin out loud. We think it was because there was so much ground to cover considering we were basically starting from scratch with my medical care again. Maybe future appointments won’t be so hectic.

I left the office with two beta blocker prescriptions, a prescription for higher and tighter compression socks, an endocrinologist recommendation, and the advice that I should stop taking my sleep medication so often because he doesn’t want me to have to rely on Lunesta. He prefers I take Melatonin, but as that never worked for me, I don’t see that happening. I did start cutting Lunesta tablets in half because that was his alternative suggestion, but it doesn’t seem to be as effective. I’m not sure he understands how bad my sleep pattern can actually be, which is understandable considering I didn’t really get a chance to tell him.

After the appointment, we stopped at a diner to get a bite to eat before heading home, where we talked about where our heads were at and how we felt about everything that happened. We all agreed that we left more confused than anything else, but also hopeful that this is where I’m supposed to be, at least for now. As all over the place as the appointment was, I left with the feeling that my health isn’t always going to be this way. As y’all know, I couldn’t say that a week ago. He didn’t promise a cure, especially considering how my POTS was brought on (and the fact that POTS doesn’t truly have a cure), but he did say his goal was to get me to at least be able to function, which is all I ask as someone who is currently stuck in their bed more often than not.

A Peek Behind the Curtain


Photo found on Unsplash. [Picture is looking down at the hardwood floor, where rays of light are poking through sheer curtains.]

I think one of the hardest parts of getting sick at a young age is I don’t remember a time when I wasn’t sick. There’s no drive to “get my life back” because what was my life before? Learning algebra and braving the monkey bars? I don’t know how to not be sick. My teenage years were consumed by fighting with my school system, ER visits, and being bounced around from specialist to specialist until I was finally given a concrete diagnosis. I didn’t sneak out after curfew, go to parties, or really do anything without talking to my parents about it first because maybe it was dangerous with the new medication I was taking, or maybe it was too taxing on my disabled body, or maybe I had to save up that energy for an important doctor appointment.

It’s hard to watch everyone I grew up with moving on with their lives. Graduating college, excelling in their careers, getting engaged, and some even have children. I think it’s hard because I don’t know where I would even begin… My life was put on hold the moment my leg was injured in that middle school hallway. I never went for my driver’s license or graduated high school, which are big milestones I’d always dreamt about as a kid. I feel…stuck? No, that doesn’t sound right. Behind? Sure, let’s go with that. I feel behind. Like everyone around me is on fast forward and I’m on pause.

With this blog, and now an Etsy shop, I was starting to feel like I was getting my life back; moving forward. My sleep medication was finally working with me, meaning I was no longer waking up at dinner time and falling asleep at eight o’clock in the morning. I’ve run out of my sleep medication and reverted back to being nocturnal. My bedroom is beginning to feel like a prison again.

As much as I love my family, I want so much to be free and live my own life! The plan, before all of this medical stuff happened, was to graduate high school, apply to NYU, and live in a dorm. I was not supposed to be in my childhood bedroom staring at the same six walls day after day for nearly twenty-one years. A driver’s license will grant me a little bit of freedom, but I’ve been saying I’m going to take the test since the day I turned sixteen. (I was back in home school at sixteen, so I didn’t take the written exam in class with everyone else.)

Logically, I know I still have my whole life ahead of me to do normal adult things like rent an apartment and, I don’t know, get excited over buying a new washing machine, but at this very moment it doesn’t feel like I do. It feels like I’ll never be well enough to live independently, or eventually start a family. How will I even meet someone if I’m almost always confined to my bed? Yes, there are days where I’m able to go out, but, like I said in my last post, I’m always with my family. With too much free time on my hands, I’m constantly thinking about the future and how fast it seems to be approaching. I don’t even feel twenty. In some ways I still feel like the twelve-year-old that was dreaming of my twenties and what my life would be like. If my twelve-year-old self could see me now.

“Danielle, it won’t always be like this.”

Says who? I’ve been bedbound for six years now, give or take a year. I’m hoping this new doctor I’m seeing next week can change that, but what if he can’t? And if he can, how much longer until I find the right combination of medications to make me a functioning human being? It took months when I was diagnosed at fourteen, but even then they didn’t always do what they were supposed to. Not to mention my body will get used to those medications and we’ll be right back where we started…

I was about to apologize for making such a gloomy post, but isn’t this is exactly what I created my blog for? In person, I try to be upbeat and positive. ChronicallyDannie is meant to give the abled a peek behind the curtain. At what I don’t normally show. If you’d rather something happier, which I completely understand, there should be a Reading Wrap-Up for May coming out soon!

Dating Is Dangerous


Photo found on Unsplash. [Picture is of two pairs of legs, one pair standing tippy-toed, against a blurry background of lights.]

Full disclosure: I typed this up on my iPhone at four in the morning because I couldn’t sleep (what else is new?).

My mom, like many other moms, tries to set me up with whomever we encounter that I find even remotely attractive. One of the waiters at Friday’s, for example. I was fresh out of the hospital with bandages all over my arms from the three needle attempts, but, yeah, sure, let’s set me up! If you’re wondering, he has a girlfriend.

Anyway, this got me thinking about dating, specifically about how my chronic illnesses would affect this. The last time I went on a date was high school, and it wasn’t really a date date because we’d been in a relationship for over a year already. We went for dinner and a movie, where there were reclining seats, so my poor circulation was happy.

I don’t think I even know how to date. And what about my chronic illnesses? What if I’m not up to walking, so I have to use my wheelchair, but they don’t know I use one part time? What if it’s a bad brain fog day (which is pretty much every day) and I can’t contribute anything to the conversation? What if one of my joints dislocate?! That’d be something. Excusing myself to go to the bathroom to wiggle my hip back where it belongs…

I don’t typically like to bring up the fact that I’m chronically ill if I haven’t known them for a little while first. I’ve found that it can be overwhelming because there’s a lot of ground to cover. There’s Postural Orthostatic Tachycardia Syndrome (POTS), hypermobile Ehlers-Danlos Syndrome (hEDS), Chronic Fatigue Syndrome (CFS), arthritis, and let’s not forget gastroparesis and GERD… Hot.

In a perfect world, I’d let them find out gradually over time, this way it’s not such an overload of information. But isn’t that kind of like lying? I’d rather they know about it all up front, so if they’re not capable of being with someone like me, neither of us wastes our time. I don’t want to spend the small amount of spoons I have on someone who doesn’t understand that I can’t do everything an able-bodied person can do. Yes, there are days where I can push myself just a little bit further, but those days have consequences. Pushing myself to pretend I’m a normal, able-bodied human can set my health back days, if not weeks. Of course, I have decent days where I’m able to at least appear as if I’m not sick, if only on the outside. Like the night I went dancing.

Then again, can I really expect them to just get it right off the bat? I mean, not my illnesses. I still don’t even understand everything that’s going on in my body. But the part where I’m not a normal 20-year-old, unable to do normal 20-year-old things. And if they do get it, what if they’re afraid to invite me to do normal 20-year-old things because they automatically assume I can’t? Hiking: definitely out of the question. But I’m not totally hopeless… I find myself struggling somewhere between, “I want them to get it,” and, “I don’t want them to think I’m a tiny fragile flower incapable of doing anything but laying in bed and watching Friends reruns.” Although, there are days where I’m incapable of doing anything but laying in bed and watching Friends reruns… I’m not helping, am I? Do you see what I mean?!

So, I asked myself, what would dating me consist of? On the chronically ill front, I mean.

Most of my time would be taken up by naps, let’s be honest. And doctor’s appointments… I have a lot of those. ER visits for dehydration, though we’re looking into other solutions for that. I’ll have bruises all over my arms because my veins suck and doctors are always asking for my blood. Sometimes my wheelchair will be along for the ride, especially if there will be a lot of walking. I’m pretty much glued to a water bottle at all times and I add salt to everything. But that’s quite enough for the “cons” list.

As for the pros…? I can do cool bendy party tricks.* My skin is always velvety smooth (heck yeah, EDS!). We can skip the line at concerts. We’ll always have a good parking spot. Odds are I’ve seen your favourite TV show. I will literally fall for you if I get too hot. (Okay, that joke didn’t even sound funny in my head, I’m so sorry.)

This entire post is yet another reason why I deleted Tinder. I made a date with a guy to go to the movies (admittedly not the best first date idea) and was so nervous, I had an anxiety attack lasting three days until I finally cancelled on him the night before. Though I completely denied my having social anxiety at the time, even though I so clearly do. (I’m going to write about my struggle to come to accept it at some point. It’s on the list.) Do I regret cancelling the date? Yes. However, if I didn’t cancel because of social anxiety, I would’ve ended up cancelling due to POTS. My heart would not calm down at any point throughout the three days (except, I suppose, when I was asleep). This left me with a heart constantly feeling like it was going to pound out of my chest, dizziness, nausea, the whole shebang.

I have come to the conclusion that dating is dangerous. Or maybe it’s just dating me that’s dangerous. Should I come with a warning sign? “CAUTION: Danielle’s brain overthinks absolutely everything to the point of having to cancel your date, even if she was initially excited about it. Don’t make concrete plans.”

Conclusion: Dating is hard. Dating while chronically ill is almost impossible. Almost…

*Edit from Future Dannie: Since posting this, I’ve learned that doing “cool bendy party tricks” can cause even more damage to your body with hEDS. I now refrain from doing them unless asked by a medical professional for diagnostic purposes.