- Acquired a quad cane named Egbert.
- Finally got all of that blood work done for my OB-GYN and rheumatologist. They ordered the tests last December/January.
- Nearly fainted in an iHop directly after getting my blood work done because there was no one around to seat us. We’d gotten Egbert the day before and, look at that, it’s already saved my life.
- Saw my rheumatologist, who agreed to explore Sjrogren’s syndrome. Ordered a couple of tests for that, as well as more blood work, and a skin biopsy for small fiber neuropathy.
- Found out Remicade has been approved this whole time (A.K.A. since January).
- I started Northera, though it’s too soon to tell if it’s making a significant difference.
- My grandma adopted a 10-year-old Yorkie named Jovi.
- My article for chrisbyrnes.com was published! “7 Things You Won’t Learn About POTS From WebMD”
My blog has been a bit quiet these last few months, hasn’t it? I’m usually updating you on my latest doctor appointment or sharing a story about something I did that week… To be honest, there’s not much going on here. My mom, who is my partner with all things chronic illness, has been recovering from surgery, so everything’s kind of on hold at the moment. She had a really good day today, though! Low fatigue, easier mobility, and tolerable pain levels.
As for me, I’m getting back into making jewelry and updating my Etsy shop. I had let things slip through the cracks due to winter’s crushing fatigue and spring’s arthritis, but the sun is shining and the birds are chirping! Back to work. By the time you’re reading this, I’ve already made two custom bracelets for family friends and, hopefully, I’ve taken new pictures to replace the existing ones on my shop’s page. Arthritis + holding a heavy DSLR was a no-go before. I really should experiment with that tripod my grandma loaned me…
On the chronic illness front, my mom and I are hoping to find a day where we both feel well enough to head out to a medical supply store. I need to look at quad canes and also buy those tighter compression socks I was supposed to purchase months ago. If we can fit in blood work for my rheumatologist before Methotrexate runs out, that would be great, too. (His office warned me that they won’t renew my prescription if I don’t go for the blood work. Eek!)
There are a bunch of other things on my medical to-do list, like a pelvic ultrasound, blood work (different specialist), and probably more that my foggy brain can’t currently think of. I’ll tackle those things after I get the others taken care of.
And we’re back! I had to take a pause from writing because my sleep meds kicked in and then I just forgot to finish it. It’s now 4:50 in the morning, so technically the 10th, but I haven’t slept yet so it’s not tomorrow yet in my head. Where were we?
Ah, yes. Well, my body is finally feeling better after my fall a few weeks ago. The bruises have faded, including the nasty one on my thigh, unnoticeable to anyone but me. The cut on my upper lip has healed, though the resulting red mark hasn’t disappeared yet. The gash on my left hand has finally finished closing up, but, again: a red mark reminding me of what happened every time my eyes catch a glimpse of it. My top two front teeth are about as good as they’re going to get, it seems. The right one that was worse off than the other is the teeniest bit wiggly, which it likes to remind me of every time I bite into something. I still haven’t gotten used to my new smile, however looking at “before” pictures of myself smiling feels foreign and detached. I’m looking forward to the day where I discover a happy medium.
On a happier note, Milo is able to breathe out of his nose again! He was so terribly exhausted that he slept on and off for two days. I know this feeling well. He’s currently sound asleep on my bed beside me, having little active puppy dreams. It’s exactly as adorable as it sounds!
I have my monthly iron infusion + saline appointment tomorrow (Thursday, the 10th). My mom’s taking me since she’s feeling better, so Grandma and I will have to continue our Gin tournament some other time. It’s also National Nurse’s Week, or at least that’s what my mom told me. If I don’t make us too late, we’re going to pick up a gift for the infusion nurses before we get there. I love these monthly appointments because the building isn’t too far from my house and all I have to do is lay in a recliner with my cozy zebra printed blanket for hours and hours. It’s as close to Heaven on Earth I’m going to get.
I’m currently in a gastroparesis flare, though no vomiting. Yet. Just everything that comes along with constipation: little-to-no appetite, stomach cramps, reflux, headaches, nausea, fatigue… The usual suspects. Thankfully it hasn’t lasted longer than a week in a couple of years now. Here’s to hoping that trend continues.
And I think that’s about all I’ve got for ya! What’s new in your life?
Disclaimers: I was given a free ARC of Failsafe through Netgalley in exchange for an honest, unbiased review. Spoilers ahead!
Author: Anela Deen
Genre: Sci-Fi, YA, Dystopian
Release date: May 20, 2018
Average rating: 4.05/5 stars
My rating: 4.5/5 stars
There is only one rule: Never leave the settlement
Nobody remembers when human civilization fell to the living computer known as the Interspace. Trapped within its massive expanse, what remains of humanity struggles to survive. There are no maps to the outer grids, and drones patrol the network. Escape is impossible.
Except seventeen-year-old Sol can access the network’s secrets in her dreams. The information comes at a physical cost, but with food and medical shortages threatening her community, it’s a small price to pay for survival. The supply runs are also the best way to prove she can still contribute, especially after her recent epilepsy diagnosis took away the role she’d been training for.
When a grave mistake alerts the drones to her trespassing, Sol finds herself running for her life. She never expects to encounter Echo, a stranger who may hold the key to humanity’s freedom.
Together, Sol and Echo will attempt to reach the central core of the Interspace and shut down the system. To survive the journey, they will need to evade drones, signal towers, and a dangerous enemy known only as the Override. Even with Sol’s access to the network and Echo’s incredible abilities, they may still fail. The Interspace is always watching, and if they’re discovered, it will mean the final extermination of all mankind.
Okay. How do I properly express my love for Failsafe without becoming a gushy mess? I don’t think it’s possible. First of all, the character development…
I started out not loving the main character, Sol, because she, like many other disabled characters in books I’ve read, thought she was less of a person due to her illness. However, as the story progressed and Sol found herself away from the ableist environment she grew up in, she finally came to the realization that she has not gotten so far in spite of her illness. Epilepsy is simply a part of her and yes, she had to make some adjustments in her life to accommodate it, but she is still worthy and entitled to everything an abled person is.
The character development displayed here is so incredibly important to me as a disabled, chronically ill person. When I was her age, I thought similar things about myself. I thought I was less of a person due to the ableist society we live in. It was depressing and discouraging and I really felt for Sol in those scenes. When she finally learned that the opposite was true, I cried, I was so happy for her!
Sol wasn’t the only one who grew as a character. Echo grew to become one of my favourite fictional characters of all time. I won’t spoil it for you, as it’s too cute not to experience yourself.
Second of all, Sol and Echo. Sol! And! Echo! Their chemistry was intoxicating. My cheeks hurt from smiling so much. Sometimes I scan paragraphs in books like this where there’s a long adventure to get to their end goal, but I didn’t have to do that at all in Failsafe. Every scene was written in such a way that I was hanging on every word, empowered by every sarcastic retort. I stayed up all night reading just so I wouldn’t have to leave Sol’s and Echo’s world.
Of course, the book wasn’t perfect. I have yet to find one that is. I would’ve liked to see how everything turned out: the settlements’ reactions, Sol reuniting with her parents and Leithan, that sort of thing. On that subject, I really felt like her settlement was going to play a bigger role in the story than it did. Sure, they were her motivation, her reminder of why she’s risking her life for Echo’s mission, but after she leaves the settlement they never show up again. Sol did check in with them over radio once or twice, though we were told so in afterthoughts, not firsthand. This doesn’t bother me enough to knock my rating down a full star, though, because the story as a whole was detailed and well developed.
Do I recommend this book? Yes! Go pre-order it right now!
I’m apologizing in advance for my foggy brain! Milo’s had an upper respiratory infection since last weekend and rest has been scarce for the both of us. However, I did promise a health update regarding my appointment with my POTS doctor last week, so, without further ado…
Part 2: The Cardiologist
My dad had the day off from work, so he drove my mom and I to my POTS doctor’s office down south. This would be my dad’s first time meeting him and experiencing the chaos that usually occurs during his appointments. Let me tell ya, he did not disappoint.
First of all, his office forgot I also had an Ansar Test scheduled for that day, so, when I finally did get called into an exam room after the usual two or three hours of waiting, we had to remind them about my scheduled test. Only, my doctor decided I was going to get “the new test”, so it wasn’t going to be the usual sitting and standing I was used to. This time, I did everything laying down, with added blood pressure cuffs on my ankles, and stickers stuck to the soles of my feet. This certainly wasn’t the first time I felt as if I were living out a Marvel hero’s origin story.
Turns out “the new test” included a tilt table. Oh, joy. It wasn’t long before I was strapped down to the table and informed of what was about to happen. (I’d like my superhero name to be Zebra-Corn! That’s part zebra, part unicorn.) I was informed the test was supposed to last 40 minutes and that they’d be taking my blood pressure throughout. If I felt like I was going to pass out, I was instructed to inform them immediately. It should also be noted that the decision to do “the new test” was very last minute, so I didn’t have to stop taking my meds beforehand like you would typically do for a tilt table test. Before I willingly hopped onto the table for this whole thing, I was instructed to take off my compression socks. I don’t know how I managed to slip those suckers off without removing my jeggings, but I did and, yes, I’d like a medal. I did have to excuse myself to go to the bathroom in order to get them back on later, though.
Okie dokie. So, the table was, well, tilting, and it only stopped when it reached 90 degrees from the floor. As I slid down the table, my ribs caught the strap and they were not happy. They were bruised and partially dislocated for two days. Happy EDS Awareness Month, by the way…
To calm my nerves, I escaped to my happy place, where I live in a little cottage by the beach. I’m sitting on my back deck wrapped in a cozy blanket, just listening to the waves crash. While I was in my happy place, I was completely unaware of the fact that my doctor was trying not to sound panicked. He had taken my blood pressure for the second time in less than a minute and was going back and forth with the person controlling the program on their laptop. My doctor kept repeating, “Put her down,” and the other man tried to remind him that we were only a few minutes into the 40-minute test. My doctor was not having it. He just kept repeating, “Put her down. Put her down now,” in between asking me if I felt like I was going to pass out.
Here’s the thing. I didn’t feel like I was going to pass out. At least, not how I usually did. My usual presyncope symptoms are dizziness, blurry vision, nausea, a gurgley feeling at the back of my throat, tachycardia, and a sense of impending doom. Okay, kidding about the sense of impending doom…sort of. As I grow closer and closer to passing out, all of those symptoms will intensify and my blurry vision will lead to full-on blacking out. I’ve never actually passed out, but I’ve been pretty damn close too many times to count.
While I was strapped to the tilt table, I didn’t feel any of that. I did, however, feel my blood dropping to my feet and I’d bet my bottom dollar it wasn’t coming back up. Let’s remember that my compression socks, the things in charge of making sure my blood doesn’t pool, are off. My parents and I noted my blood pooling to my feet even before we started the tilting part of this test, so you can imagine how much it progressed once I was essentially standing straight up.
I told my doctor about the blood thing. I also told him that I probably would have been extremely dizzy and nauseous had I not taken the second dose of Midodrine in the waiting room. Honestly, all things considered, I felt fine. Looking at my doctor’s face in that moment, though… Well, he clearly did not understand how I could possibly be fine.
My doctor tried my blood pressure once again, noted that he could not find it, and the man in charge of the program brought the table back down so that I was horizontal again. My head suddenly felt like it did when I was a kid hanging off of the end of the couch so I could watch TV upside down. The blood would rush to my head and I’d feel lightheaded, dizzy, and a little nauseous. I figured I was tilted that same way, but on the table. It wasn’t until they started undoing my straps and blood pressure cuffs that I realized they had actually put me horizontal.
After I got my compression socks and knee braces back on (I was so disoriented from the blood pressure fluctuations that I kept putting my shoes on before my pants and braces), we went back to the exam room and waited for them to come in with the test results. During that time, I got my parking placard renewal paper signed and checked in with my dad to see how he was doing with all of this. We always tell my dad what happens at these appointments, but I don’t think he really understood what took us so long until he actually experienced it himself. That night, we didn’t get home until at least 9:40 P.M., when my scheduled appointment time was 3:45.
My doctor came in the room going on about how many points I’d lost in only 90 seconds (I don’t remember the exact amount of points, but it was apparently a lot). He kept saying, “severe Orthostatic Hypotension,” and told us he’d never seen such a severe case in any of his POTS patients. He also said that I didn’t produce any sweat in my feet, which is what those stickers I mentioned earlier were measuring. That was when he diagnosed me with Small Fiber Neuropathy. So, there ya go. Two new diagnoses in less than ten minutes. My mom, my grandma and I all suspected Small Fiber Neuropathy for me, but any doctor we brought up the idea to dismissed it. I honestly felt like laughing, but he was still explaining the results of the tilt test to us, so I bit it back.
Everything happened really fast, as it usually does with him. He gave me my new diagnoses in the same breath that he used to list off the medication he was switching up. My mom and I were furiously texting each other keywords and things we needed to research so we wouldn’t forget them while he moved onto the next thing. As for my medications, he switched out Midodrine for Northera. Eventually we’ll also be changing my sleep meds, but he wants to see how I do on Northera first. I’ve already received it in the mail, though I need to call his office before I can officially make the switch.
Once everything calmed down, my dad told him about my fall the weekend before, which I’d completely forgotten to mention to him because the surprise tilt table test threw me for a loop. He was so concerned about it that he told me to get a quad cane and even talked about it in his dictation to my rheumatologist. That moment was incredibly important to me. I explained to him that my fall was mostly EDS’s fault, not POTS, and he still took an interest and wanted to help me. I can’t say the same about doctors I’ve seen in the past. Many of them only addressed issues regarding their own specialty and would tell me to talk about it with another -ist. Prescribing a quad cane may not seem like much, but it meant a lot to me.
While we’re on the subject, if you have any tips for picking out a quad cane, let me know in the comments!
I think that about covers everything. My next appointment with him is in July. Huge props to you if you made it all of the way to the end of this post!
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?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!