The Lymphedema Story

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!

New Beginnings, Part 2

Photo found on Unsplash. Close up of the back of someone’s head with short blonde hair as they look behind them at a blurry background.

Read part one here.

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On Tuesday, I made a post dedicated to my upcoming doctor appointment and saying goodbye to the man who initially diagnosed me seven years ago. He’s a pediatric doctor and I’m three months shy of being twenty-one, so it was time to move on.

In a way, saying goodbye to my pediatric POTS doctor is like saying goodbye to my past. If you’re a fellow spoonie, I don’t have to tell you how much of a toll nobody believing you can take on your mental health. However, this blog is meant to help other people get it, so here we go…

For me, POTS was caused by a crush injury to my left leg when I was twelve. I was in the seventh grade and had already started going through the joys of puberty. Injuries weren’t a new thing for me with hEDS (hypermobile Ehlers-Danlos Syndrome), though I didn’t know I had it at the time. There was a running joke in my family that I should just move in, I was in the hospital so often with sprains and fractures. At twelve years old, I had switched from baseball to softball, was in five+ dance classes a week, and I think I was even rejoining Girl Scouts. I’m telling you all of this because it’s important you know I was not an unhappy kid. I had friends, I was active outside of school, and I liked my classes. I still have the certificates on my wall from when I made it on the high honor roll.

Despite all of this, when I started feeling too fatigued and symptomatic to go to school after the crush injury, my school system still tried to write it off as me wanting attention. If you knew me at all back then, I did not like to be the center of attention. I was a shy kid, okay? No, thank you. At twelve years old, I couldn’t for the life of me figure out why anyone would fake these symptoms. My leg was constantly in pain after it was supposed to have healed, I was too tired to move, constantly getting migraines, I was dizzy, lightheaded, nauseous, etc. You know the drill.

But it wasn’t just my school system. Oh, no. It was also the twenty-five doctors it took before somebody believed me and gave me an actual diagnosis. On top of POTS symptoms, I had gastroparesis, though I’ve had that a lot longer. Before I was diagnosed with gastroparesis, my school and doctors alike chalked up my not being able to eat as “typical teenage girl stuff”.

When I went for an eye exam, they accused me of faking my blurry vision because apparently wearing glasses was the new thing everyone my age was doing? I still don’t understand that one. All of my friends who wore glasses at the time wished they didn’t have to, so why would I willingly put myself through all of that if I didn’t really need them?

Unfortunately, I have countless other stories exactly like those. Doctors are supposed to help you. They’re supposed to listen to you. In pediatrics, they’re supposed to be your advocates. For two-and-a-half years, my doctors failed me, and that is not okay!

You’d think after I was finally diagnosed with POTS, hEDS, and gastroparesis that people would start taking me seriously. Hahaha, nope. My school made me go through tests to “make sure my symptoms were real”. I was basically given an IQ test, though I’m not sure how my ability to solve mathematic equations had anything to do with being constipated… After I passed that, they sent me to their psychologist, where I was wrongfully labeled with having suicidal thoughts because, and I quote, “I don’t believe there’s anything mentally wrong with you, but I have to write something.” I was not aware suicidal thoughts was what he wrote down until later on.

Instead of school dances, trips to the beach, prom, and even graduation, my teenage years consisted of dozens upon dozens of doctor appointments with no answers, endless battles with my school system, chronic illness support groups, middle-of-the-night breakdowns, ER visits, injuries, countless blood draws, being poked and prodded like a lab rat, and lastly, arguably most importantly, growing up too fast. This was, and still is not, okay!

I should not have known my foot & ankle specialist on a personal level. For the first thirty minutes of each appointment, he, my mom, and I would catch up on each others’ lives. We knew all of the incredible women at reception (miss you, Paula!), the PA’s, and the fantastic team in the physical therapy department attached to the office. Each time I came back with a new injury or recurring pain, they’d say, “You’re back? What did you do now?” and we’d all have a good laugh about it. He was always so great about trying to find what was wrong (this was before my diagnosis of POTS). He was actually the one who found arthritis after the crush injury! I haven’t seen them all in a very long time and I hope they’re doing well.

Imagine how it felt to see just about every specialist there is and have each one tell you different variations of, I have no idea what’s wrong. Are you sure you’re actually sick? Eventually, in the back of my mind, I was starting to believe them. At one point I was misdiagnosed with 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”. They tested for it with 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. You can read the rest of the story here.

Then there was the RND (Reflux Neurovasculr Dystrophy) catastrophe.

Listen, I’ve been through a lot of shit I shouldn’t have had to go through. Not because I was “too young to be disabled” (if I had a penny for every time I’ve heard that), but because a lot of this could have been prevented if all of those specialists had just listened. If they had stopped looking for horses and instead listened for zebras. It was easier to decide I was faking it than to look deeper into my case and do some research. That’s why I’ve been so loud on Twitter lately. Nothing will get done if we don’t talk about issues like ableism and gaslighting and victim blaming. Nobody should have to go through what I and so many others did to finally get some answers.

Aside from my school system and medical professionals, my own friends and family had a hard time accepting things are truly as bad as they are. I’m lucky enough to say most of my family are now on board and I have an incredible support system there. However, aside from people I’ve met through support groups and fundraisers, a lot of my healthy friends have left, or I pushed them away.

I’m not trying to start a pity party, but I did say I was going to make you, as a healthy individual, get it… This is what half of my childhood consisted of, you know? It’s a part of me and it always will be. For years, it felt like a thirty-pound weight dragging behind me, but ever since I found out about my upcoming appointment with my new POTS doctor, I’ve felt…lighter. I feel like I’m moving forward with my life, which is not something I could’ve said a few months ago. I’m happy to finally let that part of my past go. Here’s to new beginnings!

New Beginnings

Photo found on Unsplash. Picture of an open monthly planner with drawings on top of it. Knitting supplies are around it in muted colours. Everything is on top of a hardwood surface.

I finally have an appointment with a new POTS doctor! Ugh, y’all, I’m so happy. It’s been a couple of years since my last appointment with my previous doctor, who was the one to diagnose me when I was fourteen. I was starting to age out of his office, which meant it was time to find a doctor that treated adults. My mom and I have been going back and forth with each other for the past two years trying to agree on who to see. Originally she wanted the highly recommended doctor three hours away, but long trips + motion sickness do not mix. Then I suggested one closer to home, but after some research realized he wasn’t going to be a good fit.

You might be thinking two years is a long time, and it is, but finding a doctor that treats people with POTS isn’t as easy as it may seem. First of all, I have to put all of my trust in this person, and as someone who was told my symptoms were all in my head for three years before I was given a solid diagnosis, trusting doctors is not my strong suit. The second thing to consider is proximity to my home. The closest doctor is over an hour away. This may not seem so bad, but motion sickness kicks in for me on any ride longer than 5-10 minutes without medication. I ran out of motion sickness meds last year. (Though I was able to get a small prescription of zofran from my ER doc. last weekend, which I am so grateful for.)

Eventually, my mom and I agreed on one cardiologist/autonomic specialist, who is a little over an hour away! Still not ideal, but it’s about the same distance as my previous POTS doctor, so it’ll have to do. The prescription was for eight tablets, so I’m setting aside four for the trip to and from the conference in July, and two for the doctor appointment in a few weeks. That leaves two tablets, which isn’t a lot, but also better than nothing at all…

One huge weight has been lifted off of my shoulders now that I have this appointment. I’ve heard really good things about him, so hopefully it goes well! I’m obviously going to write about it when the time comes. Finger’s crossed.

I will forever be grateful for my pediatric cardiologist, who was one of the first people outside of my family to listen to me and believe I wasn’t faking it for attention. He helped immensely in fights with both of my schools, made my migraines far less frequent, and always addressed me and asked me questions instead of my mom. I can’t say that last one about a lot of pediatric doctors I’ve met. I’ll never forget my first appointment with him because it was the first time after going through my long list of symptoms where I didn’t feel that…dread. Yes, that’s the word. I think it was the way he sat there and nodded along patiently as he wrote notes in my file. So many other doctors stopped after number ten; I guess they’d already made up their mind about me. But he knew it all tied into POTS, so he actually listened. He didn’t look at me like he thought he was being punked. You can read all about that day in one of my first ever blog posts here.

This is my thank you to him. You’ve helped me in more ways than you know.

Chronicling My Night in the ER

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

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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.

My 2017 DI Conference Packing List

Photo on a scary-tall bridge on our way to the 2013 DI Conference. Taken by me with a Canon Rebel T4i.

I don’t know about you, but when I know I’m going on a trip, I start planning my packing list months in advance. With brain fog being one of my worst symptoms, I can’t afford not to! Planning in advance is the best way I can avoid forgetting something important, like one of the only two bras I own when my parents and I went to Orlando last September. I still can’t believe I managed to do that…

While I was waiting for Lunesta to kick in last week, it occurred to me that the annual Dysautonomia International Conference is only two months away! What?! When did that happen?! So I opened up the Google Docs app on my phone and got to work. My mom and I have gone to the conference every year since it started, so you’d think I’d have a list ready to go, but it’s at a new hotel this time so I need to plan for all situations (e.g., too hot, too cold, not being up in time for breakfast/lunch).

This is what I’ve got so far, though I’m constantly adding things to it. Also, keep in mind that my mom and I always arrive a day early, on Thursday, and leave Monday afternoon. Feel free to use my list and adjust it to your personal needs. Do you have any other packing ideas? Let me know in the comments!

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Clothing
– 4 sets of clothes (including comfy “going home” outfit)
– Casually dressy outfit for awards lunch & karaoke.
– 4 sets of PJs (both shorts & pants, just in case)
– 8 10 pairs of underwear (you never know)
– A pair of reg. socks (I use compression socks, but, again, you never know.)
– Comfy socks @ night
– Purple Dysautonomia hoodie (for chilly nights)
– BRAS. (emphasizing for previously stated reason)

Shoes
– Nikes
– Flip-flops
– Slippers
– Shoes for casually dressy outfits.

Beauty
– Hat & Sunglasses (I swear I’m a vampire. The sun during the drive exacerbates my symptoms.)
– Hairbrush
– Shower things (shampoo, dry shampoo, razor, shaving cream, body lotion)
– Anti-frizz spray
– Deodorant
– Hair (elastics, pins, clips, bands, etc., etc.)
– Emergency things (band-aids, safety pins, elastics)
– Pads & Tampons
– Makeup? idk, who cares

Medical
– Medication (note to self: zofran!!)
– Wheelchair (+ bag)
– Vomit bags (sorry)
– Emergency dental hygiene kit
– Mints & Gum
– Medical ID bracelet
– Awareness gear (pins, bracelets)
– Compression gear (socks, leggings?)
– Hospital bag (don’t forget extra meds)

Miscellaneous
– Laptop* (+ case, charger, mouse – new batteries, headphones)
– Camera (+ bag, charger. Mostly used for the 3-hour drive there and back.)
– Phone (+ charger, car charger, earbuds, eBook downloaded)
– Road trip playlist
– Catchphrase!!! (The most important out of all of the things on this list. Even zofran.)
– Portable fan (+batteries)
– Small notebook & Pens
– An idea of nearby hospitals

Food
– Water (+ refillable bottle)
– Red Powerade
– Snack size bags of chips
– Doritos (because why not)
– Road trip snacks! (Goobers are a MUST.)
– Breakfast Essentials drinks
– Wine bottle opener**

*Normally I never bring my laptop because I don’t want to have an excuse to stay in my hotel room when I could be down in the lobby socializing, but last year my mom could’ve used it when she was volunteering, so I’m bringing it this year.

**Nobody thinks they need it until they do. However, I won’t be 21 until the following month, so it’s not for me.

Don’t You (Forget About Me)

Photo found on Unsplash.

It’s CFS Awareness Day!

Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, is broken down to extreme fatigue. Basically, no matter how much rest I get, I will always be tired. There are days where I am not quite as exhausted, but those days are rare. I’ve heard of people going into “remission”, but as of right now there is no cure, so even if/when I do have a period of better health, I will always live with CFS.

Symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis include, but are not limited to:

• Extreme fatigue (I’m shocked)
• Worsening symptoms after mental/physical exertion
• Muscle aches/weakness
• Joint pain
• Dizziness
• Headaches
• Sleep disturbances (e.g., insomnia, sleep apnea)
• Blurry vision
• Fevers
• Depression
• Night sweats
• Mood swings
• and the reason I am making this post…brain fog.

Hooooh boy. Let’s do this.

Actually, before I go on, I’d like to get something off my chest. While changes in diet and exercise can help some patients with ME/CFS, it’s not a cure-all, and it doesn’t work for everyone. Cases range from moderate to severe, meaning no two patients will be exactly alike. This makes treating CFS, and other illnesses like it, difficult.

Alright, moving on.

I’m focusing on brain fog instead of Chronic Fatigue Syndrome as a whole because it’s arguably my worst symptom. Some would say my worst symptom is fatigue or pre-syncope, but I would take everything else over brain fog any day. Hopefully this post will help explain why.

According to Google, brain fog is defined as “a cloudiness of consciousness”. Meaning, due to constant fatigue, my brain doesn’t quite process things like it should. There’s a reason your teachers tell you to get a good night’s sleep before a big exam… Your body needs time to recharge, recollect itself. When I’m asleep, my body doesn’t do that. More often than not, I’ll wake up feeling as if I hadn’t slept at all.

Think about it. When you’re tired, you can’t quite think straight. Your thoughts are muddled and cloudy, words don’t come out of your mouth the way you intended, and you can barely remember what you were just doing, let alone what you had for breakfast this morning. Consider that, but multiply it by ten. Maybe fifteen. You know what, let’s make it an even hundred. Yeah. That sounds about right.

Brain fog is the reason I prefer writing, like this. It allows me to take the time to think about what I want to say, rather than feeling the pressure of responding in a timely fashion face-to-face. You see, when a person with CFS is tired on top of their normal level of tired, it takes even longer to process information. If you ever find yourself having a conversation with me face-to-face, be prepared for me to say, “Sorry, what were we talking about?” about a million times. I’m so extremely sorry in advance.

A perfect example of this is was at my cousin’s house last Christmas Eve. I was still on my backwards sleep schedule, so I’d only woken up a half an hour before we left for their house, and I’d been in a chronic illness flare that entire week. After I opened my gifts, I thanked one of my cousins. She asked if I saw the gift certificate she and her family gave me, and I automatically said yes, because even though I didn’t remember what I’d opened, I probably saw the gift certificate.

I am not ungrateful. I appreciate everything they were kind enough to give me. However, I’d started getting foggy on the hour-long drive over there and it was getting progressively worse as the night went on. So, at the time, I barely remembered walking into the Florida room and sitting down, let alone opening presents.

My cousin mentioned not knowing what to get me and being glad that I liked nail polish, and I just stood there, trying to so hard to picture myself opening the presents again so I could remember this gift. I accidentally said, “Nail polish?” out loud, which was me in my head trying to spark some sort of memory, and that was it. I was caught.

At this point, I felt absolutely awful, not from my symptoms this time, but because I couldn’t possibly explain to my cousin in a crowded, noisy room what brain fog does to me while I was foggy and over-stimulated. My aunt, who was sitting next to me when I opened the gift certificate for a manicure, held up the envelope that I’d clearly opened and the memory came back. Too little, too late, buddy.

I fumbled around a poor excuse for an apology to both my cousin and my aunt and included, “My brain isn’t working tonight,” at an attempt to explain myself. I can only hope they understood.

So that’s brain fog. And it sucks.

Though sometimes my brain fog is from Postural Orthostatic Tachycardia Syndrome (POTS), I know the incident on Christmas Eve entirely belongs to CFS because I’d been wearing my compression socks, which prevent blood from pooling at my feet, thus that part of my defective body was working the best it could, thank you very much.

April Goodreads Reading Wrap-Up

January | February | March

Disclaimer: I was given Recruits for free through NetGalley in exchange for an honest review.

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Title: Recruits
Author: Thomas Locke
Genre: YA, Sci-Fi, Fantasy
Average Rating: 4.36/5 stars
My Rating: 4 stars
Publication Date: February 14, 2017

Goodreads Description:
“For a decade now, seventeen-year-old twins Sean and Dillon Kirrell have been drawn to a mysterious alternate world they’ve translated into hand-drawn images covering their bedroom walls. It’s a world they’ve only seen in their dreams until now–when a stranger recruits them to train for a mind-bending mission of survival.”

My Thoughts:
It took me the entire month of April to finish this book, and I’m not sure why. The action scenes were well-written, the dynamic between Sean and Dillon was honest, but still entertaining, and the ending was wrapped up nicely. There were little things throughout the book that didn’t capture my attention quite like they should have, which is why I’m not giving it five stars, only four. However, if you’re on the fence about reading Recruits, I’d definitely recommend it.

Hello, Arthritis, My Old Friend

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.

Reading, Etsy, & Milo | Dear Diary #3

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?

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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