Miralax Tips & Tricks

Flatlay of a pink smoothie with berries on top. Green foliage branches are scattered around it.

Photo by Brigitte Tohm on Unsplash. [Image Description: Flat lay of a pink smoothie with berries on top. Green foliage branches are scattered around it.]

The last time I was under the care of a gastro specialist, I was in high school. I haven’t chosen a new one since, which means gastroparesis and GERD have gone untreated for at least six years. My symptoms are not as severe as they once were, but that doesn’t mean I no longer have them.

All of this is to say I started taking Miralax again. Is it helping? Debatable. But I like the ritual. I imagine it brings the same comfort as if I were making a cup of coffee or tea, though I rarely drink either.

Miralax Tips & Tricks

  1. Start off at a low dose and increase as needed.
  2. Powder first, then pour your drink.
  3. It’s tasteless, unless you mix it with water or milk. Learn from my mistakes.
  4. The powder tends to stick to ice. If you want a cold drink, put it in the fridge first.

An Update, of Sorts

An Update, of Sorts.

Photo by Veronika Lykova on Unsplash. [Image description: A cluster of pastel blue flowers against an outside wall.]


My blog has been a bit quiet these last few months, hasn’t it? I’m usually updating you on my latest doctor appointment or sharing a story about something I did that week… To be honest, there’s not much going on here. My mom, who is my partner with all things chronic illness, has been recovering from surgery, so everything’s kind of on hold at the moment. She had a really good day today, though! Low fatigue, easier mobility, and tolerable pain levels.

As for me, I’m getting back into making jewelry and updating my Etsy shop. I had let things slip through the cracks due to winter’s crushing fatigue and spring’s arthritis, but the sun is shining and the birds are chirping! Back to work. By the time you’re reading this, I’ve already made two custom bracelets for family friends and, hopefully, I’ve taken new pictures to replace the existing ones on my shop’s page. Arthritis + holding a heavy DSLR was a no-go before. I really should experiment with that tripod my grandma loaned me…

On the chronic illness front, my mom and I are hoping to find a day where we both feel well enough to head out to a medical supply store. I need to look at quad canes and also buy those tighter compression socks I was supposed to purchase months ago. If we can fit in blood work for my rheumatologist before Methotrexate runs out, that would be great, too. (His office warned me that they won’t renew my prescription if I don’t go for the blood work. Eek!)

There are a bunch of other things on my medical to-do list, like a pelvic ultrasound, blood work (different specialist), and probably more that my foggy brain can’t currently think of. I’ll tackle those things after I get the others taken care of.


And we’re back! I had to take a pause from writing because my sleep meds kicked in and then I just forgot to finish it. It’s now 4:50 in the morning, so technically the 10th, but I haven’t slept yet so it’s not tomorrow yet in my head. Where were we?

Ah, yes. Well, my body is finally feeling better after my fall a few weeks ago. The bruises have faded, including the nasty one on my thigh, unnoticeable to anyone but me. The cut on my upper lip has healed, though the resulting red mark hasn’t disappeared yet. The gash on my left hand has finally finished closing up, but, again: a red mark reminding me of what happened every time my eyes catch a glimpse of it. My top two front teeth are about as good as they’re going to get, it seems. The right one that was worse off than the other is the teeniest bit wiggly, which it likes to remind me of every time I bite into something. I still haven’t gotten used to my new smile, however looking at “before” pictures of myself smiling feels foreign and detached. I’m looking forward to the day where I discover a happy medium.

On a happier note, Milo is able to breathe out of his nose again! He was so terribly exhausted that he slept on and off for two days. I know this feeling well. He’s currently sound asleep on my bed beside me, having little active puppy dreams. It’s exactly as adorable as it sounds!

I have my monthly iron infusion + saline appointment tomorrow (Thursday, the 10th). My mom’s taking me since she’s feeling better, so Grandma and I will have to continue our Gin tournament some other time. It’s also National Nurse’s Week, or at least that’s what my mom told me. If I don’t make us too late, we’re going to pick up a gift for the infusion nurses before we get there. I love these monthly appointments because the building isn’t too far from my house and all I have to do is lay in a recliner with my cozy zebra printed blanket for hours and hours. It’s as close to Heaven on Earth I’m going to get.

I’m currently in a gastroparesis flare, though no vomiting. Yet. Just everything that comes along with constipation: little-to-no appetite, stomach cramps, reflux, headaches, nausea, fatigue… The usual suspects. Thankfully it hasn’t lasted longer than a week in a couple of years now. Here’s to hoping that trend continues.

And I think that’s about all I’ve got for ya! What’s new in your life?

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.

Chronicling My Night in the ER

Trigger Warning: I talk about needles, blood, and hospitals.


A picture of me smiling in a black spaghetti strap sundress laying on a white sheet on top of a navy blue hospital bed. There are EKG stickers showing on my arm and chest.

Two nights ago, I spent five hours in the emergency room due to dehydration. I have POTS (Postural Orthostatic Tachycardia Syndrome), which means a trip to the ER for fluids isn’t really big news… However, when I told my non-chronically ill friend I was in the ER, they freaked out, so I decided to make a blog post about it.

If you’re new, you can find more information about POTS here.

With POTS, the two things that every doctor will tell you to do are drink more fluids and add salt to just about everything you can. For reasons I cannot remember, us POTSies need more water and salt than “normal” people. Which might be fine, except I also have gastroparesis. Taking more than a sip of water at a time almost always makes me nauseous. Do you see my problem?

For three days leading up to the night I spent in the ER, I was experiencing my usual symptoms of presyncope, which are a mix of dizziness, lightheadedness (is that a word?), blurry vision, leg weakness, fatigue, brain fog, tachycardia, palpitations, a weird gurgling feeling at the back of my throat, and probably more that I’m forgetting. Some people feel a different mix of symptoms, or don’t get any kind of warning at all. For those that don’t know, presyncope is the feeling of passing out without actually doing it, although I was coming dangerously close on days three and four, hence why I agreed to go to the hospital. Notice I said agreed because I’m stubborn and don’t want to make my parents spend $100 for a trip to the ER if I’m not broken, bleeding, or ready to hit the floor. Even if they’d gladly do it if it meant I’d feel a little better.

If I’m being honest, I probably should’ve gone for fluids months ago. I almost caved before Christmas, but I’m too damn stubborn, so I pushed through it. We all know how that worked out. The last time I paid a visit to the ER was on the way home from last year’s Dysautonomia International Conference. I don’t even think my mom and I made it out of Virginia before I was looking for those glorious blue H signs. Fast & Furious would be proud of my mother for how quickly we got to the hospital. I’ll have to make a blog post about that place because it was one of the smoothest experiences I’ve ever had.

Anyway, my mom comes home from work and sees me laying face down on my bed with my pillows and blanket all over the place.

Allow me to explain. The WiFi was better at the other end of my bed, but it was uncomfortable and I was cold, so I grabbed my pillows and tried to maneuver myself under the blanket without removing it completely, which of course did not work in my favor. This was all so I could watch the season finale of Grey’s Anatomy. However, the internet was still shitty, so I put my laptop aside and decided to work on Etsy stuff. I remove a grumpy Milo from my legs, throw the blanket off of me, stand up, and quickly come to the realization that standing was a terrible idea.

On comes the presyncope, worse than it had been the previous three days. I sit down, chew on an orange flavored Salt-Stick tab, and sip on some water. Back to Grey’s Anatomy. Laying down with a spotty internet connection is better than standing. I finish the episode, dry my tears, and move on to catching up on Legends of Tomorrow, but eventually get tired of pausing the video to buffer every few minutes, so I set my laptop aside once again and brave the unpredictability of standing up. Rinse and repeat a couple of more times before I’m too nauseous and dizzy to do anything other than collapse onto my bed wherever and however I land and stay there until A. I feel better or B. someone comes home. B. happened first.

Now you’re caught up.

Dad got home shortly after Mom and the three of us left for the hospital. The cool fresh air made me feel a little better, but not enough to cancel the trip, so on we went. After signing in and going through triage, we stayed in the waiting room for an hour and a half? Two hours? Thirteen years? I don’t know. The concept of time tends to disappear when you’re in an ER.

They call my name right as my grandma arrives. We’re taken to a hallway, where I’m put in bed D across from someone in an actual room who bares a striking resemblance to Santa Claus. A nice woman comes around checking that my insurance information hasn’t changed (clearly this is not my first rodeo) and I got to sign my name on a tablet. What was I signing for? My soul, for all I know. Then we waited. And waited. And waited. Until finally I met my doctor for the evening, who happened to be super nice and even knew a little bit about POTS because he’d seen two or three cases before. Hallelujah. Seven years ago when I was diagnosed, we had to fight with doctors to get them to give me fluids. But all I had to do was tell this guy I had dysautonomia and he was like, yep, sure, I’ll put in the order right away for a bag and some zofran (for the nausea) and then we’ll see how you feel. Bless that man. Seriously, he deserves an award.

Then comes the fun part. The needles. My veins are little shits. They’re really good at hide-and-go-seek. Not only that, when you finally do spot one, it rolls away and even refuses to give blood. My hand is usually the best place for a decent vein. Usually. Meaning not this time. Drawing blood was going slowly, which isn’t a new concept for me. The problem occurred when it was time to put in the IV needle. My nurse tried to explain it to me, but I was too focused on the fact that there was a needle in my hand. Something about infiltration with the IV. In short, she had to move to the inside of my arm because fluid from the IV was escaping my veins in my hand. The attempt at my arm worked. To summarize, the IV is in, zofran is pushed through the line, and I am already starting to feel better.

Next, we wait until I have to pee because it’s urine sample time. However, before then, another nurse comes to tell me we have to redo the blood draw. Normally this would be fine, no more punctures, because we could use the IV line, but that line is currently being used by the bag dispensing fluids. At this point I’m like, “Do what ya gotta do,” and give her my infiltration-free hand. My veins still suck and refuse to give up my blood, but it all gets done and she leaves. Not only do I have all three of these bandages from puncture sights and an IV sticking out of my arm, but I still have the stickers all over my body from the EKG they did in triage. I’m starting to feel like I’m in the tragic backstory part of a superhero movie. Like The Flash when he was in a coma after being struck by lightning. Speed force, here I come!

I’ll skip past the urine sample, where I almost forgot I was supposed to give one, and go on to the part where nobody came to collect it and my mom was trying to nonchalantly wave it around until somebody noticed. Nobody noticed. We couldn’t stop laughing. She put my cup of pee down until my doctor came back wondering if anyone grabbed it. He quickly realized it was up to him to fulfill that task. I’m so sorry, Doc. This is where we convinced Grandma to go home because it was really late and she had work the next day.

All that’s left to do at this point is wait until the bag is empty. During this time, Mom made friends with my hallway bed neighbor and my dad fiddled with the A/C unit because apparently it was hot. I didn’t notice because IV fluids make you freeze. They usually give you a blanket, but nobody offered and I didn’t ask.

The bag full of fluids is finally empty, I’m unhooked, and now we’re just waiting for the results of my pee to come back. Fantastic. My doctor comes back to see if I need another bag, and I probably should’ve said yes, but I was tired and I didn’t feel like I was going to pass out upon standing anymore, so no second bag for me. Next thing to tackle was the nausea. It went away shortly after administering zofran four and a half hours ago, but he wanted to make sure I could keep food down, so he came back with a bunch of snacks and some drinks. I didn’t realize how hungry I was until I practically inhaled a turkey sandwich and a cup of apple juice. I felt okay and there were no incidents, which means I passed the test!

More waiting until somebody could take the IV line out of my arm. I had snacks and updating my Instagram story to keep me busy, so I was fine. My parents, however, were exhausted and starving because none of us had eaten dinner yet. Well, except for me, who just polished off a turkey sandwich. Doctor’s orders, who can argue with that?!

The final needle is taken out, I get a free waxing when the EKG stickers are ripped off, I sign something, and I. Am. FREE! We head over to Friday’s because it’s the only restaurant open at 12:30 in the morning in New Jersey. And eventually we go home, where Milo acts like we were never coming back, I make my bed, rip off the rest of the stickers, and we all go to sleep.

Is All Publicity Good Publicity?


Photo found on Unsplash.

In my quest to find something new to get into on Netflix, I stumbled upon The Night Shift. It’s a medical drama centered around the night shift of an ER in San Antonio, Texas, where you’ll find a lot of the doctors used to be field medics in the military. Despite this post, I’m actually really enjoying it.

In the middle of season two, there’s this patient who we discover has a tumor in the area of her brain that tells you when you’re full. On the road to getting her gastric bypass surgery, she starts throwing up whatever she’d recently eaten, and when the doctor and the intern on her case come to her aid, the intern tells the doctor it’s gastroparesis. Gastroparesis. Solely because she was throwing up her food! When the mother of the patient asked them what gastroparesis is, the doctor tells her, “It means she can’t keep anything down,” and orders a drug I don’t remember and erythromycin.

Now, I know this is a fictional TV show. I get that the writers behind the show probably aren’t real doctors. Hey, I should just be happy they mentioned gastroparesis at all, right? But, man, this really grinds my gears! First of all, though in many cases patients with gastroparesis can’t keep their food down, and thus have to use substitutes like Ensure drinks or even feeding tubes, that is not the definition of gastroparesis. Gastroparesis, or delayed gastric emptying, is exactly how it sounds. The gastric system is paralyzed and doesn’t digest things in a timely fashion, if at all. Though erythromycin can help some patients with GP, it’s not a cure. GP is a chronic condition, which means that girl in the TV show would have it for the rest of her fictional life.

Let’s talk diagnosis. Puking, while common amongst GP patients, is only one fish in a much larger pond full of symptoms. On top of that, when someone’s vomiting from overeating, my first thought is not, “It must be gastroparesis!” But I’m not a doctor… I’ve just been living with this illness for the better part of my life. It took me about a year, give or take some months, after we started looking into my symptoms to get a diagnosis. That was after seeing multiple specialists and taking so many tests and scans, I can’t even remember them all. You know what I do remember? The countless blood tests. The taste of the radioactive eggs I had to consume for my gastric emptying scan. The pill-cam I swallowed before waiting around in the lobby of the Children’s Hospital of Philadelphia for hours and hours, not allowed to pass the time with electronics like my phone because it might’ve messed with the machine I was hooked up to. The icing on top of the cake? The colonoscopy, endoscopy, and two biopsies I was put under for to rule other things out. And this intern, however fictional, decided after three seconds of watching his patient vomit up her food that she has gastroparesis? Please.

Symptoms. Like I said, puking is common, but I know patients that never experienced that with gastroparesis. I, however, used to vomit so much, I stopped eating Chinese takeout because I thought it was food poisoning. (Spoiler alert: it wasn’t. Although I still can’t look at boneless spare ribs the same way.) Along with that, there is stomach cramping, constipation, loss of appetite, nausea, fatigue, headaches, bloating, significant weight gain or loss, malnutrition, vitamin deficiencies, indigestion, etc., etc.

Do you see what I mean?

Some people say any publicity is good publicity, and maybe to an extent they’re right. However, accurate representation is just as important. There are people who will watch that episode and think they know what gastroparesis is now. I, like so many others, have already been told I’m exaggerating my symptoms by doctors, we don’t need that from our peers, too.

A Semi-okay-ish Day


Photo found on Unsplash.

Is it redundant to say I’ve been feeling like crap when I, a chronically ill individual, am guaranteed to always feel like garbage? In any case, it’s the truth. Today I had a semi-okay-ish day. Evening, rather, because as I’ve mentioned before my sleep schedule is completely backwards.

However, the past three weeks were awful. So awful, in fact, that I didn’t shower for two out of three of those weeks. I don’t feel guilty. I was not up to showering even with Chairmaine, so I didn’t, and that’s okay. Well, not okay, I suppose, but I’m still not going to feel guilty for it. It happens, you know? Sometimes you just have to let it happen and save your energy for other things, like eating, which was another thing my body was having trouble doing.

Up until three years ago, my gastroparesis was so bad that I was constipated for five weeks straight, in constant pain, and had to force myself to eat. When I say eat, I mean drink chocolate flavored Carnation’s Breakfast Essentials drinks for breakfast and lunch, and only eat a couple of bites of my dinner. After trying what felt like absolutely everything, even enemas, eventually my body started to work with me again.

Which brings us back to the past few weeks. My appetite has always sucked. There’s a running joke in my family that our parakeet Roxy eats more than me. But even having a small bowl of cereal was asking too much the other day and I almost vomited. Not counting carsickness, I haven’t had that sort of incident in years.

Aside from a poor appetite, CFS and POTS were also kicking my ass, which were big reasons why I couldn’t shower. I’ve accepted that I’ll never be rid of gastroparesis completely and that even when I have it under control like I did, I’ll still have flare ups.

Thankfully, I’m feeling a lot better than I was, which isn’t me saying I’m not bedbound anymore, because my bed and I are very much still in a committed relationship, but at least I can walk to the dining room down the hall and not feel like I’m dragging a fifty pound weight behind me. In fact, you know how I said I hadn’t showered for two weeks? Well, this week I showered twice! I haven’t been able to do that in such a long time… It’s actually pretty sad. And a little gross.

If you’re wondering how Chairmaine’s doing, it’s going pretty well! Having a shower chair is such a great help. I didn’t even feel like I was going to faint when I got out of one earlier, which is not something I could’ve said pre-Chairmaine. It makes some things easier and other things harder, but I think I’ve finally found my rhythm with it. Overall, I’d definitely recommend a shower chair to anyone thinking about getting one.

Anyway, that’s what I’ve been up to. Oh, and if you’re wondering where February’s reading wrap-up is, I’m sorry to say that I did not finish any books last month. There was Miss Peregrine’s Home for Peculiar Children, but I stopped three quarters of the way in because I simply could not get into it. There’s a review on Goodreads here if you’d like to read my thoughts on it.

Thank you for being so patient with me!