Photo by Brooke Lark on Unsplash. [Image Description: Fifteen blue cupcakes with rainbow sprinkles around the rims scattered over a pink surface. One of the cupcakes is unwrapped and half-eaten.]
Happy November 28th!
Also known as the anniversary of the day I published my first blog post. That’s right, folks! Chronically Dannie is officially a one-year-old! Honestly, when I initially signed up for WordPress, I wasn’t sure I was going to stick with this long enough to reach the one-year mark. You see, I have a habit of starting something new, being obsessed with it for a while, and then about four months later I get bored. So, I abandon the project, find something new, and the process starts over again. It’s a bad habit, I know.
Yet here we are, twelve months later to the day, and the Chronically Dannie blog is still alive and kicking! Sure, there were some rocky moments, like when I only posted three times in all of March, and four times each during September and October. I try to publish something every Tuesday and Friday, but it doesn’t always work out that way. What can ya do?
Looking at my stats, my best month seems to be August, with a total view count of 310. Maybe to some of you that doesn’t seem like a lot, but for someone who didn’t even expect ten people to follow their blog, let alone 53… Well, my jaw hit the floor when I saw that at the end of August.
Fifty-three of you. I want to say that I’m grateful, but the word just doesn’t seem like enough. I try to only publish the stuff I’m proud of, but sometimes ya just gotta vent, you know? The comments on those posts are always so nice and I appreciate them more than you’ll ever know.
Just… Thank you. Even if you’ve only stumbled upon my blog today and don’t know anything else about me… Thank you.
Here’s to one more year! I hope you’ll stick around. I hope I’ll stick around.
Photo found on Unsplash. [Image Description: The word “thankful” in all caps surrounded by paper acorns, pumpkins, and leaves.]
Thanksgiving has come and gone, so how about a little update on my last post? We talked about how gastroparesis could potentially screw up a holiday centered around food and spending time with family. So, how did it go?
The night before, I lost track of time and ended up taking a shower at one o’clock in the morning. I don’t think I actually fell asleep until at least 3:30 A.M. Naturally, when I awoke the next day I was exhausted. Exhaustion sometimes has a weird affect on me. When most people would be crawling back into bed, I tend to do more on those days. I think it has something to do with feeling particularly unproductive when I’m too tired to do anything, so I overcompensate.
Anyway, I woke up on Thanksgiving Day feeling exhausted, bloated, and my stomach was cramping from the night before because I had eaten the second half of my chicken caesar wrap, which my body never lets me do. Convincing my body to go through the motions to change clothes and even get Milo (our yorkie) ready to go, well, it was hard. Eating “breakfast” and taking my “morning” meds helped with the fatigue a little, though.
(The quotes are there because my “mornings” start at noon.)
Honestly, overall I felt pretty okay after arriving at my grandma’s house, who lives down the block from us. Gastroparesis was kind of kicking my butt a couple of days leading up to Thanksgiving, so I was a little worried, but apparently for nothing. I ate two plates of food and even had a little bit of dessert later on. For someone who would order off of the children’s menu if it were socially acceptable, eating so much in one night is big for me.
The only chronic illness problems I really had were being tired and having an aching shoulder. My shoulder pain flares up whenever I’m upright for a few hours. I think it’s from hEDS, but you can take your pick from any of my chronic conditions…
I’m sure I overdid it, and I’ll definitely be paying for it for the next few days, but what can ya do?
In other news, there’s a sale going on in my Etsy shop! Get 15% off ALL handmade bracelets until December 1, 2017. No coupon code required.
Photo by Timothy Eberly on Unsplash. [Image Description: Leaves hanging off of branches in full fall colours of yellow, green, red, brown, and orange.]
It’s Almost Thanksgiving!
For the U.S., anyway. I hope you’re safe and feeling as well as you can be. Let’s discuss Thanksgiving and chronic illness. Specifically gastroparesis.
I talk about POTS (Postural Orthostatic Tachycardia Syndrome) a lot, but, aside from a couple of posts here and there, I don’t typically get into living with gastroparesis… What better time than Thanksgiving, the holiday centered around overeating whilst surrounded by friends and family?
My gastroparesis symptoms have been pretty okay lately. At least when compared to a few years ago, where my flares were so severe I was constipated for five weeks at a time. Don’t get me wrong, I’m not at all “cured”, but it’s at least manageable now. I still have trouble eating, but at least my body can keep whatever I do eat down. My motion sickness is at an all time high, but Zofran has been a big help. Constipation is still a thing, but it never lasts longer than three or four days. All things considered, I’m doing okay in the gastroparesis department.
Unless I’m in a flare.
My flares usually start with constipation, which causes me to feel full even if I haven’t eaten all day. The thought of eating anything nauseates me, so I can forget that. On the other hand, sometimes I’ll feel like I’m starving and then take one bite of food and be so stuffed that I’m nauseous. Even the smell of food can make me feel like I’m going to be sick. Oh, and the stomach cramps! Don’t even get me started on the stomach cramps. Or the extra fatigue. Or the headaches. Or the bloating. Though I will take ALL of that over nausea…
Anyway, we’re drifting from the point. Thanksgiving and gastroparesis. So. Let’s say I’m in a flare on Thanksgiving.
knocks on wood
While everyone else is on their second plate of food, I will be picking at the one slice of turkey still on my plate. Someone will probably ask me why I’m not eating, to which I’ll reply, “I’m not really hungry.” It would be true. Also, like I mentioned earlier, the sight or smell of food can trigger nausea, especially while in a flare. I might try to stick it out to spend time with my family, but eventually I’ll have to excuse myself to go lay down in another room until the break between dinner and dessert.
Then the break comes around, I will rejoin everyone in the living room, and everything will be fine. Except my stomach cramps up from that one bite of turkey I had earlier. Sometimes I can act like I’m not in pain and can continue whatever conversation I might be having, but other times I can’t and, again, I’ll have to excuse myself.
Flares can come on at any time for seemingly no reason at all. Breakfast Essentials drinks help for when food sounds repulsive to me. I try to keep them stocked in my fridge just in case. Other flare foods include cinnamon applesauce, mashed potatoes, white rice, french fries, and milkshakes.
There’s so much more to gastroparesis flares. For example, none of your clothes will fit due to so much bloating, it looks like you’re seven months pregnant. I’ve heard of some people buying maternity jeans for those days… I might have to look into that, myself.
When it comes to gastroparesis, no two cases are exactly alike. There’s no cure, no tried-and-true treatment plan… It’s all a bunch of trial and error, with a metric crapton of error. Many of us are on feeding tubes. I’m not, but there was a time when I had to have that discussion with my gastroenterologist because I wasn’t able to keep anything down and I was losing weight. I hope to never need to have that discussion with my team of doctors again, but with illnesses like gastroparesis nothing is guaranteed.
All righty, then. That’s an example of what gastroparesis could look like on Thanksgiving. I’m thankful for many things this year. If my body allows it, I’ll be thankful for being able to sit down and have dinner with my family. What are you thankful for?
I find myself missing the days when my sleep schedule was completely backwards. Yes, it was annoying (and also terrifying) to have to navigate my house in the dark when I needed the bathroom or wanted a snack from the kitchen. Yes, most everyone I knew, including my immediate family, was asleep 95% of the time I was awake. Yes, it was impossible to attend family gatherings and doctor appointments that began before 6 o’clock at night.
So why would I miss waking up at 5 P.M. and falling asleep at 8 A.M.?
The quiet.
My routine went a little something like this… Woke up at 6 P.M. Had dinner with my parents as my breakfast. Did everything I needed my bedroom light for while they got settled for bed (writing, refilling my medication organizer, showering, etc.). Then, my parents went to sleep and I put my headphones on so I could catch up on TV and watch movies. Aside from snoring, the house was quiet and dark and peaceful. Heaven for someone who feels over-stimulated by loud sounds and bright lights. I lived a majority of the past couple of years in the dark. When the sun began to rise and my family woke up for work or whatever it was they were doing that day, I went to sleep.
Cut to this summer, where I began going to doctors again to get my health back on track. Although I did not mind living in the dark, even I could not deny that I wasn’t truly living. So I got a refill on my sleep medication and slowly but surely got reacquainted with the sun. As anyone who reads my blog can tell you, I’m still struggling with my sleep schedule and can’t quite seem to get to a place where I’m waking up before noon. But lunch time is still an improvement from waking at dinner, so I’ll take what I can get.
However, I miss the quiet.
I love my family, I do, but there’s always something happening here. Whether the TV is blasting because yet another movie my dad has watched a hundred times is playing, or my mom is listening to someone’s awful cover of a song from their youth, or my brother is working on a car with his friends near our bedroom windows… Let’s not forget Milo, our dog, who needs to bark the entire time my dad is cutting up his treats to refill the container for the week. There’s always something and I’m always so tired.
The worst part of all of this is that it’s not their fault. Their behaviour is completely normal. This is their home and their lives, too, after all. I’m just so tired all of the time and the world is so loud all of the time…
I find myself missing the days when my sleep schedule was completely backwards.
Photo found on Unsplash. [Image Description: A black and white photo of a feminine-presenting person holding their index finger to their lips as if to “shush” someone.]
I’ve mentioned my mom a lot around my blog. She’s my rock, especially when it comes to the chronic illness side of things, because she started this journey with me. She was there for every doctor appointment, every emergency room visit, and always advocated and stood up for my care when doctors and even my school system would not. She knows more about what’s going on in my body than I do because most everything before my POTS diagnosis is a blur.
So, yeah, I mention my mom a lot around my blog. This story, however, begins with my dad.
At the dinner table one night, my dad told us that someone at work asked how I was doing. When I asked what he said back, I was honestly a little surprised by the answer. My dad comes to appointments when he can, and he listens and asks questions when we talk about it, but he had never mentioned talking about it with other people before then, if that makes sense. So, I was surprised when he told his friend from work something along the lines of, “It’s like day and night, it changes so fast.”
He’s completely right, though. I could feel fine (well, fine for me, at least) one minute and, a second later, need help getting back to my bed.
An example of night and day with chronic illness:
Last week, I went for a couple of CAT scans that I was supposed to get done over the summer (oops). The CAT scans went fine, they were actually pretty quick and easy. Afterward, I knew my mom was stressing about having to take so much time off of work for appointments and tests, so I suggested we go back to her office because it was close to the place where I got my CAT scans done. I assured her I was feeling okay, so we went. I got some work done through apps on my phone, while she and her coworkers did their thing. I even got cake! There was a birthday in the office!
A little backstory… We were running late to the CAT scan. In all of the rush, I just threw on an outfit that was easy and didn’t have metal on it, which ended up being a pair of leggings and the first comfy shirt I saw. I remembered my knee braces, but not my compression socks. Oops?
Anyway, the whole time in the office, I was fine. A little tired, but I’m always tired, so it was manageable. Then it was time to go home. I grabbed my stuff and headed down the back stairs next to their office to get to our car. Again, I felt fine.
However, as soon as we got into my mom’s car, I started to feel it. “It” was the result of sitting upright all day in various chairs, from in the waiting room of radiology to my mom’s office, without compression socks. For those that don’t know, compression socks help my blood flow back up, when it normally just likes to gather in my legs, especially my feet. The whole day, I monitored my ankles to make sure they weren’t turning dangerous colours. When lilac starts to turn into violet, I know I need to get horizontal stat or my body’s going to do it for me.
So, we’re on our way home, and I stopped monitoring my ankles because I get nauseous if I move around too much in a vehicle (even on zofran). About halfway home, the fatigue hits and it hits hard. When we finally reached our driveway, I was too tired to get out of the car and my knees were cranky because I was moving around all day after having the anti-inflammatory shots only a few days prior.
To recap, everything in my body hurt and if it wasn’t in pain, it was exhausted.
Somehow, I convinced my body to go up the flight of stairs in my house. Why are there so many stairs in this house?! All I wanted to do was head down the hallway and collapse into bed, but I went over to the couch instead because Milo was so excited, it looked like he was going to fall off the armrest. (Milo is our Yorkie.) I bent over to safely put him on the floor, which was a mistake.
My muscles were too fatigued to stand back up and man, was I dizzy. There was nothing to catch me if I fell backwards because I was in front of the entrance to the kitchen. I tried to push off of the end of the wall that leads into the kitchen, but my legs wouldn’t do the rest of the work to get me standing steady, and then I was trying to dodge Milo, who was doing, “You’re home! You’re home!” figure eights around my legs…
I fell on my ass, narrowly missing Milo.
So, there I was, sitting on the floor, contemplating whether to try to do the whole standing thing again, or to just live out my days on the floor.
When my mom came upstairs, I explained why I was on the floor, but she’s a POTS mom, so I didn’t really have to explain. I assured her I didn’t need help, so she folded laundry while I tried to work up the energy to stand. She was done folding the laundry by the time I finally was able to get up.
Dropping everything on my bedroom floor, I collapsed onto my bed, where I would stay until my dad came home with cold cuts for dinner.
Remember, I was feeling absolutely fine until the moment we got into the car to go home. That’s just the way my days go with chronic illness. One second I’m fine and can handle a doctor appointment and going to work with my mom in the same day, the next I’m too tired and achy to even pull my blanket up onto my body. Let’s not even get into how shitty I feel the day after all of this happens…
Photo taken by me. [Image Description: Dannie on the kitchen floor with the caption, “Chronic illness is falling on the floor and being too tired, weak, and in pain to get up. I live here now.”]
Photo credit to my mom. [Image Description: My back to the camera in my wheelchair.]
I find it difficult to accept help, whether it be from a stranger, friend, or family member. Since getting sick and becoming disabled, this difficulty has only been more prominent. At one of the Dysautonomia International Conferences, I remember struggling so hard to get through the carpeted hallway and reach the elevators from my hotel room at the other end of the hall. There was a rubber bump to cover the crack where the carpet and linoleum met. It was the first time I’d attempted to use my wheelchair on my own that wasn’t just a test run outside of my house, so trying to build the momentum to get over this seemingly tiny obstacle was the worst. However, I was determined to do this by myself because my wheelchair is my little slice of freedom when I’m feeling like utter crap.
A man and a woman happened to be waiting for an elevator, themselves. The man offered to help, clearly I’d been struggling to get over this ridiculously minuscule bump, and the woman stood by, also wanting to help but not quite sure where her part in all of this was. I assured them that I’d be fine, but thank you so much anyway! They left hesitantly, not sure if they should leave a teenager alone to struggle with her wheelchair. As soon as they were gone, I stood from my chair, stuck a carefully chosen finger up at the presyncope I was suddenly feeling, and moved the damn chair over the damn bump. Sitting back down, my heart doing Olympic-level sprints, and feeling hopelessly out of breath, it hit me… I still had to get over the gap into the elevator, and even if I could do that, how do I get back out?!?! Instead of texting my mom a picture of the bat signal for her help, my stubborn ass figured it out myself and made it down to lunch, albeit totally and completely out of breath with sore arms. Was it worth it? I’ll leave that for you to decide.
Photo taken by Dannie of ChronicallyDannie. [Image Description: Dannie’s crossed legs with the captions, “Two hours in the waiting room and it’s not even close to being our turn. I forgot my water in the car. SOS.”]
For the first time in a while, I left a doctor’s office hopeful. Not that I will one day be 100% healthy because, let’s be realistic here, that will never happen and I accepted it long ago. However, I am hopeful that my doctor is actually trying to get to the bottom of all of the shit other specialists in the past have neglected to look into.
Unless you’re new here, (I recently took down the blog posts I’m referencing) you’ll be surprised to find out this doctor is my rheumatologist. We got off to a rocky start, but it was only my first appointment with him and I maybe, might have, just a tad, misjudged him… We unofficially started fresh today, not that he’s privy to any of this.
Moving on from that, let’s get into what was discussed during the appointment.
He agreed to change my sleep meds due to the side effects I was experiencing (dry mouth, nightmares, buying things online I would normally be too cheap to purchase). I’m back on Lunesta instead of Ambien, and Flexeril instead of Amitriptyline. Flexeril, also used as a muscle relaxer, is completely new to me, so we’ll see how this goes.
We discussed how the knee braces he gave me are doing, to which I told him they help, but I’m still having pain. We also went over all of the X-rays his office did last time I was there and confirmed my arthritis is worst in my knees, wrists, certain finger joints, and I think one of my hips and one of my elbows? I’m pretty much arthritic in all of my joints, but those suck the most, apparently.
My favourite part of the appointment was when he repeatedly mentioned how screwed up my autonomic system and joints actually are. Obviously I knew this, but I’m so used to my doctors underselling what my body puts me through. When I was younger and more gullible, I actually started to believe it myself. Now I know better, especially due to the fact that my health has continued to decline since then. Both him and my autonomic specialist seem to agree on my body being a total mess. Feeling validated by doctors is empowering. Is this how healthy people feel when they get normal-people sick and only have to visit one doctor to find out what’s going on? Incredible.
The last time I was there, he gave me an anti-inflammatory shot in my elbow and it helped a little. This time, he gave me shots in both of my knees, since I’ve been having trouble with them. I currently have an ice pack on one to reduce any swelling and soreness. I should probably apply an ice pack to my other knee as well, but it feels fine and I’m too tired to get up.
On top of the MRIs, CAT scan, and the other half of the blood work I still have to do, he ordered more CAT scans and more blood work to look for more things. When my mom looked over the blood work order, as she does every time a doctor asks for my blood, she noticed he’s searching for many of the things we’ve begged other doctors to look into over the years. Thanks to my rheumatologist, Lupus, immune system deficiencies, and things that I can’t even pronounce let alone spell are in consideration.
I couldn’t even tell you how many times I’ve been accused of exaggerating the severity of my symptoms, or was told I was just looking for more diagnoses for attention. Lol, no, my body just refuses to function correctly. Unfortunately, when you have one chronic illness like EDS, it typically brings its friends along for the ride.
I think that about covers everthing! I will leave you with the image of my mom exiting my bedroom doing the chicken dance after informing me what the next few weekly injections I’ll be getting are made out of. (If/When insurance approves them.) Thanks, Ma. Love you, too.
Chronically Dannie 