It’s Been a Long Week | Part One

As I was laying in bed earlier, my fingertips hovering over my laptop’s keyboard, I struggled to recall what I was up to last week post-stairs incident. The past two weeks in general have been such a blur. Originally I was going to talk about everything in one post, but it was getting ridiculously long. We’ll be breaking it up into two parts, continuing on Friday!

Let’s start at the beginning, shall we?

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Photo by Annie Spratt on Unsplash. [Image Description: Blue hydrangeas in the background. The words “It’s Been a Long Week, Part 1 of 2” in black against a sheer white rectangle in the foreground.]

On Thursday, April 19th, my grandmother died. Unfortunately we weren’t very close. As a result, I didn’t really know what or how I felt. A few days later, a Sunday, was her wake. That was when I fell down the stairs. The day after that was the burial, but unfortunately I wasn’t up to going thanks to chronic illness and, you know, tumbling down concrete steps. On Tuesday, I had an appointment with my POTS doctor, where he performed a surprise tilt table test and gave me two new diagnoses. Then there was Wednesday, which consisted of an emergency appointment with my dentist to assess the damage from the fall and see what could be done.

It’s been a long week, guys.

Part One: The Fall + the Dentist

Let’s talk about the damage from my accident. So, like I said in my last post, I don’t remember much from the actual fall. After talking to family members that were there and from what I could piece together from my own memory, here’s what happened…

I held the door open for my brother and then I turned around to find the railing in order to safely descend the stairs. With the door open, you had to go down a step to reach the railing, which is what I was trying to do. However, my foot didn’t fully land on that next step and my leg, too weak to support me, gave out. I tried to grab onto the railing, but my body was falling the opposite way. I think I hit another step with my right side on the way down, which accounts for the nasty bruises on my hip and thigh.

I didn’t scream or cry while it was happening. It was like the emotional part of my brain shut down, or switched to survival mode. Once my brain accepted the fact that this was actually happening, that I really was falling down the stairs and that I wouldn’t be able to stop it, I did all I could to avoid breaking my nose, or damaging my neck or spine.

My dad told me I shielded my head with my arm, which explains the scrapes and bruises on my left hand. I do remember thinking as I was reaching the bottom that I really didn’t want to break my nose (I was imagining how much that would hurt, funnily enough), so I arched my head up. Incidentally I landed on my two top front teeth instead, chipping them and cutting my lip. One tooth was half the size it used to be, while the other’s chip was barely noticeable.

My bruises and cuts are healing now, though the ones on my right hip and thigh still look pretty bad, to be honest with you. The burning shoulder pain is also back (it had gone away after starting Methotrexate a couple of months ago). My teeth, however… Well, okay, someone meeting me for the first time won’t even notice I chipped my teeth unless I tell them. I, however, who was quite partial to my smile pre-concrete stairs, know that the right tooth is now shorter than the left even after my dentist bonded them. It feels foreign and abnormal in my mouth.

I’m sure I’ll get used to it. I’m sure the pressure I feel when biting on food will go away. I’m sure my cut-up and bruised hand will heal, I’m sure I’ll soon be able to sit down without pain, and I’m sure the all-too-fresh memory of hearing my family cry out will fade. As of right now, though… I guess I’m just taking it day by day.


In part two, we’ll talk about last Tuesday’s cardio appointment and my two new diagnoses. Be sure to follow this blog via email to be notified as soon as it goes live on Friday!

The Lymphedema Story

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Picture found on Unsplash. Picture is of a cloudy night sky with lightning strikes. The light surrounding it is a purpley-pink.

At one point during my diagnosis journey we were sure I had Lymphedema because my worst symptom at the time was leg pain resulting from the crush injury that never truly healed. According to Google, Lymphedema is defined as “swelling in the arm or leg caused by a lymphatic system blockage”. The only way to test for it was a lymphoscintigraphy. I’m not going to sugar coat it. To this day, I have never felt worse pain, and I’ve broken many bones. They tell you it’s only a bee sting. I’ve never been stung by a bee, but bee sting MY. ASS.

Allow me to walk you through that appointment. At least, from what I can piece together. We’re waiting to go into the room where the test is going to take place. My first clue that something was up should’ve been when multiple employees went out of their way to prepare me for what was about to happen. I was told many times that it was like being stung by a bee. (I will refer you back to the final sentence of the previous paragraph.)

We’re taken into the procedure room. By “we” I mean my mom and I because only one of my family members were allowed to go in. I hop up on a table in my brother’s old Nike basketball shorts and a purple “I hate Mondays” shirt. (Same, younger me. Same.) I put in my earbuds and crank some music because I knew there were going to be needles involved and I always felt better with music. I think I had “Just Keep Breathing” by We the Kings on repeat. They prepare whatever they need to prepare, and a team of nurses hold me down. Yes, you read that right.

By this point, they’ve already told me how it’s going to go. They explained to me that they had to inject some kind of dye into my legs through the web of my toe, between the big one and the one next to it, on both feet. They went on to tell me it was one of the most sensitive parts of my body, but they couldn’t numb me.

I repeat: bee sting?!

So, yes, they held me down. Though they didn’t need to because I was so afraid of moving or hurting one of the nurses that I actually pressed against the table instead of the opposite direction, which would basically entail me kicking them in the faces. In fact, they said I was one of the bravest people that they’d ever seen while doing this test. They said they’d witnessed grown, muscle-y men cry and scream and kick around. At twelve or thirteen years old, who didn’t understand the concept of gender stereotyping, knowing that made me smile.

Anyway, back to the test. I’d told them not to warn me before they did the thing with the needle because then I won’t have time to build up panic as they count down. I bit the sleeve of my shirt, grabbed fistfuls of the bottom of it, and focused on We the Kings while I went through quite literally the worst pain of my entire life. The nurses gave me words of encouragement and my mom, who was by my head, was pretty much in tears because, hello, her daughter is in pain and she can’t help. Though she did. Being there helped. Making little jokes to distract me helped. She knew I was in a ton pain because A. it was probably written all over my face and B. I’d actually said something about it. Usually, I internalize it. I don’t let anyone know because what’s the point? I’d already been living with a year+ worth of chronic pain. What was the point? But the nurses told me I could scream as loud as I could if I wanted, so I said, “Ow, ow, ow, this really hurts,” super quietly. That’s how you knew I was in pain. Doesn’t make a lot of sense, I know.

This went on for a while, so my mom took turns with other family members waiting in the room outside. Eventually the pain stopped and the nurses stopped holding me down. The pain was dulling down to a more tolerable level. One foot is done! On to the next one, but first I’m instructed to hop off the table and go walk around the hospital for however long, I don’t remember. Yep. Apparently it was supposed to help the dye circulate, I don’t know. The only thing I can remember about this part is there was a McDonalds. But I wasn’t allowed to eat anything, so not only was I still in pain from this dye moving around and walking on the injection point, I had to watch my family eat while I was starving. Hah. We get back to the room and I hop on the table again. Time for the other foot. The first time around, I had the privilege of not knowing just how bad the pain was going to be. This time I knew. I’m injected and the process of trying to remember to breath and focus on something else starts up again. Screw bees. I know they’re endangered and we kind of need them to survive, but screw ’em.

I cringe every time I think about that day. Oh, by the way, turns out I don’t have Lymphedema! Who knew? I did. I knew. The diagnosis never felt right. However, my team at the time was so sure about this that, leading up to the test, I was going through Lymphedema physical therapy. We had a compression sock for my left leg special ordered and everything. (The compression sock actually did help, but not for those reasons.) Still have it, actually. When that was in the wash, I switched it out with socks I had from baseball. Try explaining to your friends in gym class why you only have one sock on. (I couldn’t wear baseball socks on both feet at the same time because I needed to be able to switch them out when they were also in the wash.)

So, that’s the story of when I was misdiagnosed with Lymphedema. Have you ever been told you had something when you didn’t? Let me know in the comments!

Hello, Arthritis, My Old Friend

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Photo found on Unsplash.

Remember when I pledged my undying love for spring? Yeah, well, that was before I was reminded of the saying “April showers bring May flowers.” The saying should have gone, “April showers bring arthritis.” Sure, it may not make the best greeting card, but man is it relatable!

Hello, arthritis, my old friend

Full disclosure, I’ve been wanting to make that joke all week.

With Ehlers-Danlos Syndrome (EDS), Chronic Fatigue Syndrome (CFS), Gastroparesis (GP), and all of my other illnesses, I’m no stranger to chronic pain. Though I am lucky enough that it’s not an everyday occurrence and, when it does decide to show up, it rarely gets higher than a six. (Keeping in mind that pain scales for the chronically ill are typically different than the healthy. For example, a six for some could be a ten for others.)

My arthritis has been a three, at most a four, so it’s not too bad. It just hasn’t shown up in a while. Since last spring, probably. It started last week in my left foot, stretching up to my knee, which makes sense because that’s where my crush injury was. It’s fitting, considering the anniversary of my diagnosis recently passed. Anyway, it’s since traveled from my leg to my elbow, back to my knee, down to my foot, up to my wrist, and, as of right now, down in my foot once again. I’m just glad it’s not making friends with my EDS shoulder/neck pain because that’s an eight on its own…

While I’m at it, pollen is also a thing that exists. Why is that?

Needless to say spring and I are not on the best of terms right now.

I only take Tylenol Arthritis when I really, absolutely, without a doubt need it. I don’t know why. I’m like that with any type of pain or normal person illness, always have been. I guess with all of the medication I’ve taken over the years (though I’m not currently on anything besides Lunesta and SaltStick tabs) I don’t want to take something unless I can no longer stand it. Is that healthy? Probably not, but I’ll leave that for you to ponder.

Much Ado About Spring

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Photo found on Unsplash.

I love this time of the year. My chronic illnesses give me a small break, which means I don’t have to negotiate with myself to take a shower more than once every ten days, and I can spend time with the friends I’ve been neglecting. Tonight, I helped cook dinner while my mom was on her way home from work. All I really did was put the chicken in the oven my mom had prepped the night before and boiled some potatoes, but considering I’m bed bound, it was a lot for me! I even plan on showering soon, which I usually can’t do if I’ve done other things that day, like stand up for a while without compression socks so I could help with dinner…

I dread the summer. My heat intolerance can’t handle it, which exacerbates my symptoms and makes me feel like I’m going to pass out. Though I’ve never actually passed out before, I’ve come pretty close and that’s enough to make me want to carry a handheld fan with me everywhere I go! For example, last September my parents and I went to Orlando, Florida for my birthday because they knew I really wanted to go to Harry Potter World. After walking for hours and hours in the rain and the heat, my entire body was aching and I could really use a cold shower. Seriously, I was drenched in sweat! While my parents and I were on the moving walkway, I was leaning on the rail and using my fan to attempt to cool myself down. There was one family that was passing us by that thought this was hilarious, so the father took a picture of me looking like I was dying with my Spider-Man themed fan in my face. I didn’t even know this was happening until my mom pointed it out, laughing, after they left. Thanks, Mom.

Winter, however, is a little nicer to my body because I don’t have a cold intolerance like some POTS (Postural Orthostatic Tachycardia Syndrome) patients do. Sure, there are always arthritis and EDS (Ehlers-Danlos Syndrome), but I’d rather deal with them than the threat of passing out. Though maybe that’s just me? The problem with fall and winter is that my chronic illnesses as a whole don’t let up. This past winter, for example, CFS (Chronic Fatigue Syndrome) was a gigantic thorn in my behind. There was never a moment where I wasn’t exhausted and all I wanted to do was sleep, which is basically all I did.

Cut to when winter turned into spring. Almost immediately, I started to feel better. It began with being able to use the stairs in my house when I needed to drop the cans into the recycling bin. Sure, I was dead afterward, but the fact that I was able to use the stairs at all was an improvement! A couple of days later, I spent two hours helping my mom organize down in the den, which included going up and down the stairs, standing for a while, and some physical labor. Normally I’d only be able to stand for a couple of minutes before I felt lightheaded and dizzy and needed to sit down.

The main reason I’m enjoying the spring so far is not that I cleaned or helped prepare dinner, but that I was able to celebrate one of my best friend’s 21st birthday with him and his girlfriend last week. Chronic illnesses be damned, I was determined to go to that club with them last weekend because I’ve had to cancel our plans too many times in the past and I was not about to do that on his birthday! As it turns out, and I think I owe it all to the spring, my chronic illnesses were on their best behavior and I didn’t even get the least bit nauseous on the ride to the club, which is unheard of for any drive longer than five minutes.

I danced until my entire body ached, smiled the whole night, and even had a little bit to drink. For the first time in a long time I felt my own age, not a 20-year-old woman trapped in an 80-year-old’s body. The only time I thought about my chronic illnesses that night was when I asked for some water, and it felt incredible. As sad as this may sound, I’d completely forgotten what it was like to feel normal, and not just “normal for me”. The next few days after that, I was of course reminded that I have a million chronic illnesses and they all wanted revenge, but it was totally and completely worth it for that one night.

When you’ve been chronically ill and bed bound for as long as I have, it’s easy to feel stuck. In the days leading up to when my friend invited me to celebrate his birthday, I was not in a good place mentally, which is not something I usually talk about. I was itching to crawl out of my skin into a new, healthy body so I can start living my life and enjoy my twenties. Last month I made a post talking about feeling stuck, and that helped for a while, but the thoughts didn’t go away. Though I made that post, I was and still am unemployed with no ideas on how to change that from my bed.

My point is, I needed that night out more than I realized at the time. While we were dancing, my friend asked me when the last time I’d gotten out of the house was. I had to think about it. When I finally answered, “last month,” I couldn’t help but laugh. For anyone else who was not chronically ill, an intervention would be staged, psychologists would be called, but this is my life now. Laying in bed and doing various things on my laptop from the moment I wake up to the moment I’m finally tired enough to sleep, only getting up for the bathroom and food.

Man, did I need that night out. Thank you, spring, for giving it to me.

My Shower Chair, Charmaine

I haven’t showered in over a week.

For a lot of disabled people, showering is a process. If I’m already feeling symptomatic, it is not a good idea for me to be standing under hot water for an extended period of time. Not to mention all of the bending down and getting back up again, holding my arms above my head, trying to keep my balance with my eyes closed… It’s just not a good time.

Which is why I purchased a shower chair (correction: my mom purchased a shower chair for me). Honestly, I probably should’ve gotten one years ago, but I’m stubborn and I wasn’t there yet mentally, you know? There was a constant battle going on in my head about it. It’s almost like I felt I was admitting defeat if I got one, even though I knew that was a ridiculous opinion to have. Using a shower chair is going to help me, not hurt me.

I was the same way before I agreed to a wheelchair and now I bring it with me whenever I go out. The way strangers treat me in public definitely took some getting used to, and I’ll talk about that another time, but the fact still remains that I wish I would’ve agreed to one earlier.

Anyway, back to showering. The chair came in the mail today (thank you, Amazon Prime) and my dad and I assembled it while Milo was getting groomed in our driveway. I tried to do it myself, but after disassembling it twice, my fingers were screaming at me. Thankfully, that’s when my dad came home and I just gestured to the pieces all over the couch and said, “Have fun!” All that’s left to do is clean it and adjust the height of the legs and it’s good to go.

This chair and I are going to get uncomfortably close, so I decided it needed a name. I’ve settled on Charmaine. I thought it was clever.

It’s the Little Victories

I was thinking about how I washed the dishes twice this week and immediately decided I wanted to share this victory, however small it may seem to the healthy, with all of you! Some of you are new here- Heck, I’m new here, so I’ll provide you with a little background…

My name is Danielle, I’m twenty years old, and I’ve been diagnosed with various chronic illnesses that confine me to my bed more often than not. (I am not kidding when I say there is a permanent imprint where my butt typically rests on my mattress.) One of those illnesses is Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction of the whole autonomic nervous system. That means everything you don’t think about that your body makes happen, so anything from blinking to the way your heart works.

Because of my autonomic nervous system behaving like a preteen in their rebellious phase, when I stand for more than a minute, my blood pools at my feet instead of pumping back up to the rest of my body like a normal human being. My heart then tries to overcompensate by pumping harder and my brain doesn’t have enough blood circulating back to it. Because of all of that, I feel a lovely buffet of symptoms, such as lightheadedness, dizziness, fatigue, brain fog, blurry vision, nausea, muscle weakness, etc., etc. Keep in mind, if I was already feeling those symptoms, they definitely got worse with the blood pooling. I’m just lucky I don’t full on faint like so many others with POTS. I simply feel like I’m going to.

Of course, I have other illnesses that also complicate things. Early onset arthritis, Ehlers-Danlos Syndrome Type III (EDS), and Chronic Fatigue Syndrome (CFS), but POTS has always been the main reason I don’t wash the dishes because it requires standing for a while and standing with POTS is dangerous. “So why don’t you get a stool?” I will eventually, but the point is that I do not have access to one high enough at this point in time.

With all of this in mind, and the fact that I already felt like shit, I washed the dishes. Why? Because A. they were piling up and B. I wanted to feel useful for once in my adult life. Normal twenty-year-olds are in college or working and, seeing as how I can’t do either of those things, washing dishes was something I could do. Well, sort of. So I cranked some tunes and danced as much as I could while scrubbing eating utensils and placing them to dry on a rack. Dancing actually helped my blood move around, I think, because when I was finished my feet were not as purple as they should’ve been. “Why didn’t you wear your compression socks, Danielle?” You’re not my mom!

It’s important to note that while I did wash dishes two days in a row successfully, I had to immediately go lay down and guzzle as much water as gastroparesis would let me (which wasn’t much). I also took one of those chewable SaltStick tabs and promised myself I would not do anything but watch Netflix for the rest of the night. (I also broke a glass because my arms and hands were tired, weak, and achy, but ssshhh.)

Three or four days later, I am still stuck in bed, feeling the side effects of doing a simple household chore. I don’t think I regret it, though. I did something I haven’t been able to do for 6+ months… It’s the little victories.

Contemplating Normalcy, Preventing My Illness, and Other Thoughts

A crush injury to my left leg back in the seventh grade changed my life forever. That particular injury caused my POTS. It was 150% preventable, which almost makes it worse. If it were the mono I had the next month, or some other unavoidable event, I think I could’ve come to terms with being chronically ill much sooner. It still wasn’t entirely my fault, but at least I wouldn’t be coming up with hundreds of different ways I could’ve avoided this lifelong illness, you know?

Since my POTS was caused by a leg injury, I’m always asked if I would go back and prevent myself from being in that situation if I could. My answer’s changed a lot over the years, but as of right now it’s a solid no. In the beginning, I would’ve said yes with zero hesitation, but as time went on and I became more involved in the chronic illness community, I decided I would not change what happened to me at all.

Of course I’d love to be a healthy twenty-year-old in college with a part-time job right now, but not everything about being chronically ill has been bad. I’ve had some incredible opportunities and I’ve met so many other chronic illness warriors that I would never have gotten to know otherwise. Heck, my best friend and I met through an online support group and I don’t want to even think about what my life would’ve been like without them in it.

When I do answer no, that I wouldn’t change anything, I get weird looks. I suppose they were expecting me to say yes. It almost got to a point where I felt guilty for being happy with myself the way I am. But why should I feel guilty? Why should I feel guilty for being happy? Am I supposed to hate every day I’m alive just because I’m sick and in pain? Like I’ve said time and time again, this is my normal. I’m happy with my normal. Maybe it’s everyone else that’s weird.