EDS Awareness Month | Dear Diary #8

Previously. Welcome to Dear Diary, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?


The person behind the camera holding two yellow daisies amongst a whole field of yellow daisies.

Photo by kevin laminto on Unsplash. [Image Description: The person behind the camera holding up two yellow daisies amongst a whole field of yellow daisies.]


Happy EDS Awareness Month! Ehlers-Danlos syndrome is a connective tissue disorder with over fourteen subtypes. I have hEDS, or hypermobile Ehlers-Danlos Syndrome. My symptoms range anywhere from soft, velvety skin, to experiencing multiple joint dislocations and subluxations per day.

Personal

Lawmakers are trying to control what I can and can’t do with my body, but what else is new? #AbortionIsHealthcare

Health

My autonomic specialist tweaked my medication regimen, adding two more things and adjusting the dosage of another. Maybe it’s wishful thinking, but my quality of sleep might actually be improving? I’ve dealt with insomnia and chronic fatigue syndrome for the better part of ten years. Waking up slightly less exhausted than usual would be game changing. I don’t want to jinx anything, but idk, y’all… Maybe I’ll finally be able to wake up before lunch someday in the not-too-distant future.

Remicade update: I thought I dislocated my knee, but it turns out I’ve just never seen it without it being swollen beyond recognition. I’ve had arthritis for over half of my life and injured my leg, triggering POTS, at twelve years old. For the first time in over a decade, I can see my knee! I was chuckling the whole way home from that doctor appointment because I had seriously been convinced it was broken, or otherwise injured. But nope! I just…have a knee.

Music

  1. Lion – Hearts & Colors
  2. Dear Winter – AJ
  3. Heaven, We’re Already Here – The Maine
  4. Strange Love – Simple Creatures
  5. Without Me (Pâquerette) – With Confidence
  6. Smells Like Summer – Early Hours

Blog Changes:
– New Twitter handle: @DanielleDiBona
– Added blog post categories to header links.
– Added and deleted some sidebar widgets.
– Made cosmetic changes to the homepage.
– Fixed Goodreads link among the footer’s social buttons.

The Gifts of Remicade | Dear Diary #7

Previously. Welcome to Dear Diary, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

Bokeh photography of an open book near a yellow ceramic mug.

Photo by Aaron Burden on Unsplash. [Image Description: Bokeh photography of an open book near a yellow ceramic mug.]

Personal

When I went searching for my previous Dear Diary, I caught a glimpse at the date (April 20th) and almost choked on my own saliva. Has it really been eight months?! On a semi-related subject, does anyone else feel like 2018 has been dragging on forever? No? Just me? Fair enough.

In my last Dear Diary update, I mentioned my bedroom resembling something out of the movie Twister. Well, nothing’s changed, except for the fact that I moved my bed over a couple of inches so I’d no longer have to bang into the corner of the frame every single time I entered the room. It’s the little things in this chronically klutzy life of mine.

All of my holiday shopping is done, thankfully! How are you at gift giving? Because I’m positively terrible at it. I never know what to give anyone and of course when I ask what they want I’m always met with nothings and I don’t knows. This year was no different. Though, I do have to give my mom some credit for at least telling me to get her a candle. How I managed to make picking out a candle scent a two-hour process, I couldn’t even begin to explain. World’s best gift giver over here, I’m tellin’ ya!

Health

There were two or three good health days over the past couple of months, which is new and unusual for me?? I’d actually forgotten what having real energy felt like. I was tired, but not fatigued. Doing one simple chore around the house didn’t leave me bedridden the rest of the day, as it typically would. It was an incredibly bizarre experience, to say the least.

Oh, and I finally started those Remicade infusions that my rheumatologists and I have been discussing for a solid year now… I was certain it was too early to have had any positive results, but a follow-up visit with my rheumatologist proved me wrong! The psoriasis on my scalp is gone. I’ve had issues with my scalp for most of my life, but it was one of the many things we put on the back burner once all of my other health issues arose. I laugh when I think about how we finally found out what was going on with my scalp last summer at an unrelated dermatology consult, only to have it cleared up a few months later with Remicade! With psoriasis clearing up and experiencing those few precious fatigue-free days, I feel hopeful about the future of my health, for the first time in a long time.

For anyone curious, we’re hoping the infusions will help with psoriatic arthritis and the damage in my SI joint. The place where I get them is down by my rheumatologist’s office, so it’s a hike, but once we hit farmland we’re pretty much in a Hallmark movie, A.K.A. my happy place.

Music

  1. Move – Milo Greene
  2. Better Life – P!nk
  3. Might Not Like Me – Brynn Elliott
  4. Let’s Fall in Love for the Night – FINNEAS
  5. What a Feeling – One Direction
  6. Benzos and Cigarettes – Rad Horror

Blog Updates:
– Updated About page.
– New Twitter handle: @ChronicallyDan
– New Instagram handles.
— Personal: @ChronicallyDannie
— Shop: @ChronicallyDannieCo

Things Are Quiet | Dear Diary #6

Previously.

Welcome to Dear Diary, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

annie-spratt-59115-unsplash

Photo by Annie Spratt on Unsplash. [Image Description: A flatlay of a vase full of flowers, a stack of photos, and a full mug of coffee, all on top of a dark brown hardwood surface.]

Health

Things have been kind of quiet around here. The only doctor appointments I’ve kept up with are my monthly iron infusions because my mom, who is my partner on this chronic illness roller coaster, has been recovering from surgery and thus can’t drive. My grandma’s taken me to my last two infusions, where she’s kicked my ass in Gin each time. Let me tell ya, trying to hide your cards when you only have one hand to work with is much harder than it initially seemed.

I do have a POTS appointment next week, which my dad has volunteered to take me to. This will be his first time meeting my new autonomic specialist and experiencing the chaos that is his office. My mom and I prepped him, but you really have to experience it firsthand.

Speaking of my mom, she’s approaching six weeks post-op! Her nurse comes once or twice a week. Milo, our Yorkie, is starting to warm up to her, so hopefully someday soon she won’t have to listen to him bark the whole time she’s here with my mom. Waking up much earlier than I’m used to to keep Milo occupied while the nurse is here has been…different. My body’s getting used to my sleep medication again, which means I’m not getting enough rest as it is. Not that I’m truly complaining; I do need to start waking up earlier if I want some semblance of a life in the future.

Other than sleep deprivation, my health has been stable. Well, I say stable, but I’m still pretty much glued to my mattress. At least the dizziness is mostly taken care of until Midodrine wears off. I have noticed that Florinef is drying me out faster than usual and, with gastroparesis making it hard to drink enough water, there’s not much I can do to combat it on a day-to-day basis. Definitely need to make a note to bring that up next week!

Personal

Milo’s 10th birthday was on April 3rd! I meant to dedicate a whole post to him and officially introduce you guys, but obviously that didn’t end up happening. I’d like y’all to know that’s been on my to-do list since I launched this blog back in November of 2016. I wouldn’t hold my breath if I were you.

My bedroom still looks like a tornado spun through it since emptying that dresser. I have a couple of ideas in my head of what I want to do, but furniture is so dang expensive! How? Why? I’m not about to spend $200 on a small dresser, it’s just not happening. Especially because I do not currently have $200.

That’s about all I’ve got for you this time! What’s going on in your life?


Blog Updates:
– New Pinterest.
– Now on Poshmark + eBay.
– Added Etsy shop link to my website’s header.
– Changed the format of the blog section.

How Long Has It Been? | Dear Diary #5

jess-watters-483668.jpg

Photo by Jess Watters on Unsplash. [Image Description: A white marble notebook with the word “JOURNAL” printed on it in copper. A matching pen rests diagonally on top. There’s a half-closed laptop at the top right corner of the photo.]

I’m in one of my “I want to write, but I don’t know what to write about” moods, so how about a Dear Diary? It’s been a while! Here’s a link to my last one, which was right before the DI Conference, if I’m not mistaken.


Welcome to Dear Diary, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

First of all, happy 2018! I bet you’re wondering where I’ve been. Or maybe you don’t give a crap. Either way, I’m going to tell you.

Last week, my parents were in Florida for a business trip and for my mom’s birthday. This meant it was just me, my brother, our dog, and our parakeet. To everyone’s surprise, we managed to keep the house standing for a full seven days without parental supervision. I feel I should also mention that my brother and I are both in our twenties and apparently fully capable of keeping ourselves alive, thank you very much!

A week without my parents meant a week off from doctor appointments. I had no earthly idea what to do with all of that free time. Once I caught up on returning TV shows, I finally watched The Crown (loved it), and, after I finished that, I rewatched my favourite Gilmore Girls episodes, including the four-part series released two [American] Thanksgivings ago. It was a real party over here in the ChronicallyDannie household.

The week before my parents were in Florida, I had an appointment with my rheumatologist for my final knee injections. However, this also happened to be the day a blizzard took over New Jersey, so we had to cancel. It’s not something we could’ve rescheduled, so me and my knees were shit outta luck. Between having to cancel that appointment and that second refusal letter from the insurance company about the MRIs my rheumatologist ordered last summer, I don’t know what will happen at our next visit. I haven’t even scheduled a physical therapy appointment yet, so I’m overcompensating by trying to gradually build my muscle strength back up myself. Though, aside from my core being sore, I’m not sure if I’m actually doing anything other than exhausting myself.

While we’re on the subject of doctor appointments (when are we not?), I see my cardio/POTS specialist this Thursday. Last time, he recommended tighter compression socks and changed up my Midodrine dosage because I wasn’t able to even take two a day, let alone three. I’m now on 10mg at breakfast and 5mg at lunch. I still can’t make the 5mg dose, but whatever… Is Midodrine helping? I think so. My dizziness is pretty much gone until the dose wears off, but my blood pressure seems to be lower. Considering Midodrine is supposed to regulate low blood pressure, I’m not sure what’s happening there.

Thanks to dizziness being a thing of the past while taking Midodrine, motion sickness has been so much easier to manage. Before, I’d get dizzy and lightheaded in a car, eventually leading up to severe nausea and presyncope episodes. The nausea was so bad, Zofran couldn’t even save me. Now, since I no longer have to worry about presyncope in a moving vehicle (as long as my meds haven’t worn off yet), I can just eat a little something, take Zofran before I leave the house, and I’m good to go. Motion sickness has always been a problem for me, though it’s gotten far worse since POTS came into my life nine years ago. It’s the biggest relief, not having carsickness anxiety before every drive.

That’s about it on the chronic illness front. Elsewhere, the lightbox I ordered to better my Etsy shop’s photography arrived. I’ve already set it up and I love it, but somehow I have to figure out how to get my camera to stop “correcting” the lighting. What’s the point of a lightbox if your camera’s just going to make the picture dark anyway?

Getting Things Done | Dear Diary #4

Previously.

Trigger Warning: Emetophobia mention.


Welcome to “Dear Diary”, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

I finally got a haircut yesterday (which was two Thursdays ago for you). Jeez, it’s been too long… It amazes me how taking off ten inches of hair can make me feel so much better. That ten inches of hair is currently on its way to Pantene Beautiful Lengths’ offices so it can be made into a wig. Since I’m bedbound, I obviously don’t get out much, which means haircuts aren’t a high priority for me. I usually wait until I have somewhere to be (in this case, the Dysautonomia International Conference) and/or can’t take it any longer. Seriously, have you tried showering with hair down to your buttocks? It takes too long for my tired, achy limbs and it’s just not a good time all around.

Below are before and after pictures. (Hover for image descriptions, click to enlarge.)

I’m so happy with the results! It took me a year to grow the ten inches I cut off. It’ll probably be another year before I get it cut again. This was my first time donating, by the way! I don’t know why I’ve never done it before… Big thank you to Tracey and Allie for suggesting it! And to my grandma for driving me. Also sending a thank you to my foggy brain for making me forget I got it cut, and scaring myself every time I look in the mirror.

Today, I woke up to vomit on my bedroom carpet, poop on the wee wee paper, and an upset Milo trying to tell me what happened. Unfortunately, dogs do not speak English, so I did not know there was a rash forming all over his underside until much later when my mom got home. I feel so incredibly awful for not noticing, but I essentially live like a vampire when I’m home (in the dark, as far away from the sunlight as possible), so I didn’t see it. Needless to say he was uncomfortable the entire day (not itchy, just couldn’t sleep) and Mom & I rushed him to the vet as soon as she saw it. Turns out it was an allergic reaction, to what we have no idea, and he was prescribed an anti-histamine. After the steroid shot, nausea med, and Benadryl, he was back to his old self when we got home, albeit yawning while playing with his toys.

Sometimes I think it was fate that we got Milo. If it’s not me going to the doctor, it’s him. He has joint problems, like I do, and now he’s on anti-histamines for allergic reactions, like I am, and he’s always running into things and stumbling over himself because of his crappy legs, like I do. Of course, he also has a swollen liver, chronic ear infections, pancreatitis, bladder stones, and who knows what else. Two peas in a pod, we are.

Other than rush Milo to the vet, I got a new shipment of turquoise howlite beads today, so I finished making bracelets for the conference. Slowly but surely checking things off of my list. Haircut, eyebrow waxing, bracelets, business cards, Velcro straps for my wheelchair, wheelchair gloves, Vogmask, and medication. I hope I have enough Lunesta to get me through… I’m running low. I might have to go without taking it for a couple of days before we leave.

I’m almost through two weeks on Midodrine and Propranolol! Haven’t started adding the second dose yet because I can’t seem to stay awake long enough in the morning to be able to take it. The goal is to have breakfast at 9 so I can take it, then do the second dose at 1 with lunch, and have a snack at around 5 when I add in the third dose, unless we happen to eat dinner early that day. However, today I woke up at 10 A.M. (early, compared to the beginning of the week), stayed in bed until 11:30, and only got out of bed because I realized Milo threw up. Didn’t end up taking all of my morning medication until 12:30 in the afternoon. My bad. No side effects that I can think of, by the way. My heart will race right after I take it, but that happens anyway, so I’m not concerned. I think it’s working? Who can tell anymore?

Next month, August, is my birth month! I still can’t fully wrap my head around the fact that I’m going to be twenty-one on the sixteenth. It seems like I’ve been waiting for my twenties my entire life, and now that they’re here, I’m disappointed. I am gradually “getting my life back”, so maybe I’ll feel differently 365 days from now. For the time being, this is where I am.


Blog Updates:
– Posting schedule: Tuesdays & Fridays @ 12 P.M.
– Made small changes to “About” page.

Reading, Etsy, & Milo | Dear Diary #3

thought-catalog-188056

Photo found on Unsplash.

Previously.

Welcome to “Dear Diary”, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

Milo, my dog, is snoring away next to me. I’m forever jealous that he can just fall asleep wherever he is, no matter what. Speaking of Milo, he turned nine at the beginning of April! You wouldn’t know that with all of the energy he has. Seriously, I have no idea where he finds it. I don’t think I’ve ever properly introduced Milo on my blog… We’ll have to fix that soon.

If you’ve been a reader of Chronically Dannie for a while, you’d know I’m pretty much nocturnal at this point. I did try to change that over the weekend, and it worked for a good three days before I managed to mess it up again. I’ll try again! Eventually.

May is almost here, which means April’s rendition of the Goodreads Reading Wrap-Up is due. Which also means I should finish the book I’m in the middle of. However, as I’m only 67% of the way through the only book I have to review for you this month, it might be a little late. Honestly, I don’t know what’s with me lately! I used to be able to read an entire book in less than 24 hours, but this one has taken me a month just to get through half. Maybe it’s because I’m not sure how I feel about it. There are times where I’m really into it, and others where I find myself skimming the pages. Though I’m not sure if the problem is the book or if the problem is me.

Oh! I opened an Etsy shop! Wow, I can’t believe I almost forgot to mention it. At the moment, I’m selling vintage bracelets (and soon necklaces), but eventually I’d like to make my own jewelry! I’ve been wanting to open an Etsy shop for years, so I’m really happy that it’s finally happened. Of course there’s an Instagram account for it, which you can find here. Once I’m awake when the sun is out again, I’ll take pictures of the rest of the jewelry and list them. It’s nice to have a project to work on. I think this is going to be good for me.

Milo woke himself up with his own snoring, stretched, and now he’s back asleep. No, scratch that, he’s awake and leaving me. Traitor.

On the chronic illness front, we’re still sorting out the doctor situation. A friend of mine found one closer to home, so I’m hoping to make an appointment with him to see if he’s a good fit. Nine years ago, POTS was much less talked about than it is now, so there weren’t many to choose from that treated kids. Unless I wanted to travel, anyway, and traveling is hard enough with motion sickness, let alone chronic illness. These days, POTS awareness is growing faster than I can keep up. It’s incredible to see how many doctors around the globe are treating it.

As an almost twenty-one-year-old, it’s time to find one that treats adults, and though my mom and I have discussed the one three hours away, I just don’t think that kind of drive is doable. I can barely make the three hour drive to the conference once a year, let alone for every single appointment. Last year I wound up in the ER on our way home because I was feeling so ill and dehydrated… Definitely want to try the one closer to home first.

Aside from being on a movie kick, I think I covered just about everything! What about you?


Blog Updates:
– Started pinning blog posts to Pinterest.
– Changed Twitter handle from @dannied031 to @danniedeee.
– Switched Instagram accounts: danniedibona & chronicallydannie
– New E-Mail: chronicallydannie@gmail.com

So, What’s New? | Dear Diary #2

ofadd5o8hpk-freestocks-org

Photo found on unsplash.

Previous “Dear Diary”.

Welcome to Dear Diary, a series where I update you on the little things in my life that don’t necessarily warrant their own individual posts! I’ve also decided to start putting little changes I make on my blog in a list at the end, just in case anyone’s curious.

So, what’s new?

I haven’t seen my POTS doctor in over a year and a half. This is bad for many reasons. I’ll be twenty-one in August, so I’ve officially aged out of the doctor that diagnosed me (I made a post about that day here). I think we’ve finally decided on a new one, however I’m not all that thrilled about his office being three hours away. I wouldn’t mind so much if I didn’t have awful motion sickness issues, or if I wasn’t almost out of my nausea medication. But I need to go see him in order to get more… It’s a vicious cycle.

I’ll be twenty-one in August! Honestly, it’s weird for me to think about. I don’t feel like I’m in my twenties yet. Maybe it’s because my life sort of got put on hold the second I was injured all of those years ago. I mean, think about it… I quit dance, I quit baseball, I quit softball, and I even left Girl Scouts. I didn’t get my license, I didn’t go to prom, and I didn’t even graduate high school, let alone apply for college.

I wouldn’t say I’m bitter about it, especially because I don’t really need a college education to write, though it certainly would help. I do, however, feel embarrassed when I meet someone new and have to tell them I never graduated high school, which then means I have to tell them why, and then I have to tell them my entire life’s story because nobody’s heard of any of my illnesses. By the end of the explanation I’ve probably realized our whole conversation became about my illnesses, which is exactly what I was trying to prevent in the first place. You can imagine why I deleted my Tinder profile.

I’m busiest in the summer, which is bad news for my chronic illnesses, especially with the heat. There’s the annual Dysautonomia International conference in July, my parents’ anniversary in September, and so many birthdays. We always try to do something special for my birthday because I’m bed bound most of the year, which unfortunately means missing out on a lot of family gatherings, plans with friends, and other things that require me to shower, get ready, and travel more than five minutes in a moving vehicle.

This year, my mom and I are hoping to get tickets to see Lady GaGa in concert! It also happens to be my parents’ 25th wedding anniversary, so we’re all going on a trip at some point at the end of the year. Better start saving my energy now…


Blog Updates:
– Started underlining links.
– Edited my about page.
– Added a disclosure page.
– Edited my contact page.
– Added a link to my Tumblr.
– Trying to be more active on Twitter.

Dear Diary #1

(Inspired by: You (Almost) Never Have Nothing to Write About: 4.5 Steps to Busting Bloggers’ Block by Michelle W.)

I have nothing to say. Okay, that’s not true. I’m sure there’s something rattling around in there (“there” being my brain), but, as of right now…nada. Zip. Zilch. This never used to happen to me. Up until a couple of years ago, I was overflowing with ideas to write about; stories to tell. After, what? fifteen years? of writing, it’s like I’m all tapped out.

I’m not sure where to go from here. I still love writing. I still have a passion for it. Yet, I’ve got nothing. Well, that’s not true. I’ve got whatever [waves hand at my screen’s general direction] this is turning into. Though I’m struggling to figure out how to even talk about having nothing to talk about. So, let’s not do that. Let’s talk about something else…

I’ve been watching the TV show Lucifer for the past couple of days. I’d started watching it around the time it came out (2015, I want to say?), but then I started something else, no doubt, and forgot about it until now. Being bedbound, I am well-versed in all things fictional: TV shows, movies, video games, books… Actually, scratch the last one because I’ve let my love for reading slip the past few years. I am trying to change that, starting off slow, by setting my Goodreads Reading Challenge to ten books by the end of 2017. It may not sound like much, but then that’s the point, isn’t it? Gotta start somewhere. Especially since I only read five books total in 2016.

Anyway, my point was that I’m almost always in the middle of a series. Last week it was Hawaii Five-O on CBS (I’m not done with that, so no spoilers, please). The week before that, it was… Actually, I think I was re-watching When Calls the Heart on the Hallmark Channel. I’ve been thinking about dedicating part of this blog to whatever series I’m currently reading/watching. Maybe somewhere in the About page that I still haven’t begun typing up. It won’t be anything big. Just a line, saying something like “Currently Reading: Graceling by Kristin Cashore”.

It turns out I had something to say.

I might make this a thing on my blog, for when I’m not sure what else to write. I’ll call it “Untitled”. Sure, I talked about absolutely nothing of importance, but it got me writing! It was actually more fun than I previously anticipated, so I’m not complaining. What do you think?

EDIT: I’ve decided on “Dear Diary” instead.