Skip to main content

Life Changes


This disease. It baffles me.

I can't sleep at night because I'll be to hot. I wake up sweating and clammy.

But here I am, it is over 80 degrees outside... I'm wrapped up in a flannel, long pants, furry slippers, all while being buried under two large blankets.

I'm freezing.

Before I left work, I noticed how cold I was when someone else mentioned they were feeling warm. I had just put it off to how freezing work normally is.

Then the chills set in.

I could feel it start at the top of my forehead and just move through my entire body. Then the goosebumps were covering my arms. Maybe my face looked flush at this point too.

And so I left. Disappointed in myself.

That's how I've felt lately.

My primary care doctor thinks that oh I'm just stressed out.

My neurologist feels bad for me. He was actually outside my door crying talking to the nurse discussing which meds they could get me that may help ease the pain. Because I was just so nice. And that no one that nice should have to be in so much pain.

I've seen baffled doctors sure, but if they've ever been emotional regarding my condition, I've certainly never been exposed to it.

I know that he's running out of ways to treat me.

I know that these sgb nerve block things are the last resort. Because lets be honest, my insurance may straight up say no to the Aimivog. But I still filled out the papers.

So no, I'm not "just stressed", I'm freezing, I'm out of options, and I'm disappointed.

I stood in my front entry way last night and just paused. I wasn't even half lucid, but I just glanced at my living room and then at the pattern on my bedspread and back to my living room. I'm 20 and I've built this great life for myself.

I pushed myself in high school to be the best. I excelled in my classes. I excelled in my work. I busted my ass in spring and summer with whatever job I took on. I tutored and managed the store. I did charity work and still had a life full of great friends.

I pushed myself to get accepted into amazing programs at amazing schools. I decided that hey, even though I hated Clemson itself, it sure would be easier to get into grad-school if I worked for the Dean of Architecture.

So I did. Every minute in between classes I was shuffling around campus running errands for the Dean. I pushed through my first 7 month long migraine and was still a successful architecture student getting A's in everything but calculus (again fuck calculus). By the time I realized architecture maybe wasn't for me and that I really had to get away from that bubble of a campus, the hardest thing I had to do was leave that job in the Dean's office.

What had been a simple clerical job became a dynamic multifaceted position that allowed me to do some clerical work, but work alongside the Dean and other campus officials on various projects, all while enjoying the company of the cheerful ladies I worked with.

Then I pushed myself to move across the country and venture into uncharted territory. I excelled at the first job I was offered and fell in love with how furniture is made and how much design work goes into completing a room.

The next migraine started. I pushed myself to still finish at the top of my class. I pushed myself through work. I crawled through the second semester. And in 4 months, I've quit two jobs and accepted that my health is shit.

I'm literally not the same person. My parents didn't raise a person who called out of work multiple times in a week. They didn't raise someone who did schoolwork from home. They didn't raise an unreliable individual who can barely keep up on making enough food and cleaning her apartment.

But, suddenly that's who I am.

I think my shower wall was thanking me this morning when I finally had the energy to clean my bathroom.

So. Of course I'm disappointed. I literally feel like I have failed myself. Well, my body has failed me. I quite literally could have been a rocket scientist if my little heart desired (even though I would have had to try harder in calculus). But here I am. Questioning if I should even continue with my education. Pondering how much it would truly kill me to move back home. Debating if it really matters if I only consume rice and chicken based meals because everything else is too expensive. Accepting that the iced coffee I want, will never actually be purchased.

But this friendly voice pops up on the radio, and overplayed as it is, Thomas Rhett keeps reminding me that life changes.

So. My life is changing. I'm a broke college kid that can't work and doesn't have any plans for my future.

But that's okay.

A.

Comments

Popular posts from this blog

I Know I Look Fine

Let's all take a moment to be very honest with ourselves. If we looked the way we felt 99% of the time none of us would look all too great. This isn't something that is specific to my condition. This is something anyone can deal with. Got arthritis? Got a UTI? Getting over a cold? No one is going to proudly display the dark circles under their eyes, and lots of makeup companies have perfected concealer to hide just that. But I'll put up with your looks. Your confused faces. Your attempted sympathetic "well I hope you feel better" as I rush away from work. Why? Because there's no way you can ever SEE the pain and the symptoms I'm experiencing. Sure my pupil is literally taking over the entire blue part of my eye... but hey I'm probably just stoned or something. I don't know how you'd be able to see that my body is saying hey if you don't get into a dark room right now, lay down, and try and consume some food I'm goin...

You See What I Show

You see my hair done. You see my makeup. You see my blemish free skin. You see a healthy glow. You don't recognize the tired, strained look in my eyes, because you've never been exposed to a truly "healthy" version of me. Forgive me for putting on the show. Forgive me for pretending that everything is fine. Forgive me for not looking sick. Forgive my negative outlook. Why? Because you don't get to see what this condition is. You don't see that I haven't slept in days. You don't see the bruises lining my legs because the heat has caused a rash on my skin. I understand that its a hard thing to wrap your head around. I mean I get it. I stood at work with a pain level 9. And as I walked around the store, it felt like someone was pushing from the inside of my skull down onto my eyelids. I had to forcibly hold back tears because the pain was so intense. I'd accidentally wander into an area where the sunlight was bouncing off of s...

It Hurts

To say I feel less than human, is probably a bit of an understatement. But I do. I've been home for a week. I've managed to pretty much lay in bed in agonizing pain the whole time. I had a half-assed attempt to see a friend that resulted in me rushing home as the nausea and aphasia set in. I successfully made it to massage therapy today. Which meant even after sleeping for roughly 2 hours, I got up at 7:30 and sat in traffic for hours to get to a less than expected appointment. Mind you, my previous massage therapist was so wonderful I'm most likely spoiled to other techniques. This lady was late, she sat in the same god awful traffic I did. We spent more time going over the woes of her morning, than we did discussing why I was there and what I hoped to achieve through various massage techniques. The massage room wasn't dimly lit, and even as the massage started, lights were still on. I found this odd, but decided to just keep my eyes closed. Then she started ...