For the last couple of days, I’ve been doing my own version of the 12-Days of Christmas, where I make one post a day about a certain topic of my choosing. I’ve posted about things that I really, genuinely enjoy talking about; I’ve told you about my pet snakes whom I love very much, my current WIPs, and I even gave you a small look into what one of my ‘normal’ days looks like. However, what I left out on Day 3, was the fact that I live under the constant burden of chronic illness.
So, while I do wake up and start my day off by snuggling my dog, getting a cup of tea or coffee, and then go on to check on my other critters, the time I get up depends solely on the way that I’m feeling that day as long as I don’t have anything else going on, such as physical therapy or doctor appointments. Most days however, it doesn’t matter how much or how little I’ve slept, how little or how much water I’ve drank (even though my reusable plastic water bottle goes absolutely everywhere with me), or what I’ve done the day before, I almost always wake up with a headache first thing in the morning. These headaches can range anywhere from what I think people would classify as your average headache- nothing but a little bit of discomfort, all the way up to a full-blown migraine that squashes me under constant nausea, vomiting, bright and debilitating auras, dizziness, and even fevers if it gets bad enough.
This is something that’s been going on for over 15-years. In the 6th or 7th grade I started complaining about these headaches to my mother, who also suffered from chronic migraines, cluster headaches, and ice pick headaches. Since that time, I would say that they’ve only gotten more and more progressively worse, and more debilitating over time. Constant headaches that used to be easily differed at first with the help of Tylenol, Advil, or Aleeve, are now more persistent and harder to get rid of. I’ve noticed a lot more light sensitivity and auras, which come on at the start of my migraines. For me, the auras present as flashing starbursts, with ringing in my ears, dizziness, and light sensitivity. I also get nausea at times like his, and usually I’ll feel and hear what I can only describe as a throbbing in my ears. My face will become flushed, I’ll become clammy or hot to the touch, and at time, there’ll be throbbing in my temples. This is absolutely not triggered on, by, or around the onset of my periods- which I feel the need to state because I know that’s a definite trigger for a lot of people.
Now, with that being said, on days where my pain is higher and less easily managed, I find it very hard to bring myself to do much of anything. Especially when it comes to my writing because I’ve noticed that if I’m trying too hard to focus, my eyes will begin to shake, and it’s really difficult to make them stop and focus on just the one thing in front of me. It doesn’t really matter what it is that I’m trying to focus on but, I have noticed that if I’m going to attempt to read anything- which tends to strain my eyes more, so I don’t- that it’s easier for me to try to read something that’s on a colored background, or something that isn’t such a stark contrast. Maybe that’s just me though, I don’t know.
That’s why if you’re ever looking at my Kindle app, I always have it set to a black background with white text, and the brightness is always turned down, so I don’t feel like I’m being blinded. I also find the Sepia and Green functions in the Bookerly font to be a lot easier and more comfortable for me to read. Because of this, chances are, if I’m working on one of my WIPs in Microsoft Word, or if I’m writing a post for my blog, I have my background set to black, the font is in white, and normally set to Abadi Extra Light.
Another problem that I have and have been having for awhile that you probably know about if you’ve read some of my last posts is that on August 21st, 2020, I fell down the stairs, and messed up my leg pretty bad. My Grandmother left laundry on the stairs, which resulted in a months long battle in trying to get someone to take me and my pain seriously. After two ER visits, a visit with my GP, and a few consults with an orthopedic surgeon, and an MRI, I was finally lucky enough to be referred to my podiatrist Dr. Klein. She is an absolute Godsend, as well as the first person to sit down, inspect my foot, see my very limited mobility and say, “We have a problem here, and we need to find a way to fix it!”
So… here’s jus a quick timeline for you.
- August 21st, 2020: The Day of the Injury
- The doctor at the ER at NIMC who took my x-ray didn’t actually touch or examine my root really, at all. I got told that I had a sprain, despite one of the nurses telling me I had a hairline fracture, they slapped an air cast on me, handed me a pair of crutches and told me to go see my GP in a week. Easy peasy.
- August 28th, 2020.
- I went to see my GP, Dr. Saini, who tried to shove antidepressants down my throat, told me that I had a “hard year” and that there was nothing wrong with me.
- September 12th, 2020.
- My brother and his girlfriend brought me to the immediate care center/ER in Grayslake after work one night who did another x-ray. The doctor said that he didn’t see anything wrong with me but, still referred me to an orthopedic surgeon to get looked at “just in case.”
- September 15th, 2020.
- My first meeting with Dr. Patel went… okay? He did a little bit of an exam, ordered an MRI, and told me that if I thought it would help me, he would give me the Breg boot that has been my “best friend” ever since.
- My MRI was on October 6th (that was freaking traumatizing.)
- On October 12th, I got a phone call with the MRI results and an email informing me that I had a “Nondisplaced intra-articular fracture of the medial cuboid bone with additional avulsion fracture along the lateral aspect of the cuboid bone at the calcaneocuboid ligament attachment and a partial-thickness tear of the anterior talofibular ligament.”
- Dr. Patel couldn’t figure out why this wasn’t healed yet, and then referred me to a podiatrist, who consequently does not take my insurance.
Now, in between these two parts, my grandmother had brain surgery to remove a tumor.
After a LOT of crying, fighting, cold calling and tears, I finally found the Weil Foot & Ankle institute.
- November 2nd, 2020.
- I met Dr. Klein for the first time, which has us just about caught up.
I saw her for the first time on November 2nd, 2020. That was exactly 73-days from the date of my first initial injury itself, or 2.4 months. That’s right, it took me almost two and a half months to get some proper care. I was skeptical to say the absolute least.
I was so used to people talking over me, not taking me seriously, and telling me where they thought my healing should be a that, I was just expecting another “oh, you’re fine.” I was crabby, and it was kind of a long drive but, after the onslaught of paperwork and I got the boot off, things got down to business. She was the first doctor who’d made me take off the boot and splint I was wearing, take off my sock, and took the time to examine me. She moved my foot every which way, pressed on it, pulled on it, made me cry, and claw the absolute shit out of my brother, Matthew. But you know what else? She listened to me. Seeing me in that much pain, she too teared up, and when she heard that no one was helping me, that these wounds had gone untreated for over 70-days she was livid. She ordered me to go to physical therapy 2-3 times a week for 4-6 weeks, and I have been since November 9th. She also gave me a referral to a Neurologist because she suspects that I might have CRPS type 1, which is Complex Regional Pain Syndrome. Because I really needed to add chronic pain to my bag of tricks, right?
But here we are, what is going to be 118-days later when I see the Neurologist tomorrow. That is just 3-days shy of being four months. To this day, if I’m up on my foot for more than 10-15 minutes at a time, it swells up badly. I still get the most intense pain, especially if I step down wrong, or if I try to walk “normally.” I’ve adapted to a lot of the pain, and some of it I don’t even feel anymore. My mobility, despite being in physical therapy for over a month now, has not changed. I don’t walk in regular boots or shoes unless I want to risk being so swollen that I can hardly walk the next day if at all. If I take a hot bath or even a shower, I notice that my left foot becomes gray and discolored.
There are nights where I will wake up in agony because there is shooting, throbbing pain that goes all the way up my leg, and I’m just tired of it. I am so sick and tired of being in pain all the time, and I think a lot of people in my life might think that I’m either a.) overexaggerating because this injury is almost four months old or b.) making excuses for why I can’t/don’t want to do something when that isn’t the case at all.
No one wants to be in pain all the time! It’s hard. Some days, I want to get out of bed, clean my animal’s homes, clean up my space, do laundry, do this and that, and I just can’t. I’m tired all the time, and even getting the 5-feet from my bed to my desk is enough to have me dizzy and exhausted, and ready to just go back to bed. It doesn’t matter how much coffee or soda or whatever caffeinated thing that’s going into my body I drink, it just doesn’t help.
Which kind of leads me to today in a way. Today, I had a physical therapy session only, today I had a different therapist than what I’m used to. She seemed to notice that I was having a little bit of a hard time today- rolling with the punches of a migraine but, it wasn’t so bad that I wanted to skip physical therapy. Well, it was but, my brother wouldn’t let me, and he came and got me anyways. It might be a good thing that I did though because, she started asking me all these questions and noticed that I have hypermobility and thinks that some of the other symptoms that I’ve been having make it a good possibility for me to have something called Ehler’s Danlos Syndrome or EDS. Obviously, I won’t know without a proper diagnosis but it is something that I’ll be talking to the Neurologist about tomorrow when they either try to confirm or deny that I have the CRPS type 1 that Dr. Klein suspects.
As if that isn’t bad enough, I also have Chronic Idiopathic Angioedema, which not much is known about. It’s something that I’ve been suffering with almost as long as I’ve had the migraines and the headaches. It basically means that I am allergic to everything and nothing all at once, I will break out into hives if I’m around any of my triggers, and if bad enough I could even go into anaphylactic shock, stop breathing and die.
For someone who is only 25-years old, I think I’m allowed to say that I think there is way too much wrong with me for as old as I am, and I’m hoping that I can get some answers this week as to how to fix that. However, I’m still going to make the best of it any way I can and live my life to the fullest. Even if that means that there are some days where all I do is sit at my desk with Zero falling asleep in my hood while I do my writing, read, or watch true crime videos on Youtube. So, to those of you I’ve disappointed by not posting as often, I’m sorry. I’ll try to do better.
Stay Safe & Stay Healthy.
-Sky
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