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Showing posts from September, 2018

Inclusive Shouldn't Mean Difficult

Have you ever been walking through the grocery store, and happen to pause by the floral section? Maybe you glance at the fresh hydrangeas, and decide hey, I should treat myself. Maybe you see a bouquet of sunflowers and decide to take them home to your daughter. Maybe the daisies would put a smile on your coworker's face. Sometimes the flowers last for weeks. Sometimes, you've purchased them and they're already dying. No, my mom didn't try to buy me dead flowers. How would she know that the stems had rotted out and couldn't absorb water? The thing is, it will still take these flowers awhile to die. So I chopped off the stems right at the base of the blossom and they can just float in a bowl. They won't open up. But that's okay. That doesn't diminish their value. It doesn't dissolve their beauty. So, if we can still see beauty in a dying flower, why can't we see it in a person? I mean at the end of the day, we're all dying. Awfu...

Facing Uncertainty

I finally caved today. There is so much uncertainty revolving around me at the moment that I finally just had to pack up all my stuff and do what I'm best at... find a quiet spot at the closest Starbucks and sit down and figure it all out, surrounding by people who don't know and don't care. There's something surreal about a coffee shop on a Monday afternoon. Most people are quietly typing away on their computers. Maybe their working on a paper for their English class. Maybe their straightening out their resume. Maybe their navigating spreadsheets and decided that even though they work at home, they wanted new scenery today. Maybe their just like me. I mean whats to say that the girl sitting next to me isn't also taking notes on section 11 of Social Security Disability Benefits. What's to say she isn't also trying to locate a billion different medical records from copious amounts of doctors who don't take as great of notes as they could. Did y...

15 Minutes

15 Minutes. We spend weeks upon weeks waiting and getting referrals for 15 minutes. That's our time cap. I wait to get reacquainted with my old neurologist. I come prepared with charts and spreadsheets and medical records and my migraine journal. I don't want to spend my 15 minutes going over that information, because that information is what pushed me to have the appointment in the first place. That information will be read over after the appointment. 15 minutes. He wants to know how I've been. *insert as much medical garbled history as I can remember and that seems relevant* Let me break down the process I went through before quitting my job. Then the process before withdrawing from school. Because, I'm here to talk about getting his approval for filling out disability paperwork. So, not being able to work or attend school seem like what I should focus on. But I need to mention that I was denied Botox and SPG blocks. But I need to mention I've...

Looking Back To Look Forward

Today I decided maybe I could use a dose of my own advice. In March I started this blog for a reason, and it has helped me tremendously. So I decided it was time to look back to where it all started. So I read. I read my posts from March. I read my posts from April. I read through May and stopped. Looking back is something I wish I did a little more often. I think I've been forgetting to give myself the credit I deserve. I mean, for some reason I still find myself arguing with random old white guys on Facebook about how screwed up our pharmaceutical industry is. I still find myself struggling when people say I need to stand up for myself more. And honestly, they're right. There are plenty of times when I need to just tell people to shut up or to just end conversations. But looking back is hard. Oh my gosh there were so many red flags. So many signs that would soon show their ugly face. Throughout the spring it was a regular occurrence to reach for another dose ...

Paying To Sit In Waiting Rooms

Let's take a moment to sit back and picture the last waiting room you were in. You walk in, there's probably some inconsistent signage directing you to these new "self check in kiosks" that no one is using. There's sort of a line, maybe? Suddenly someone who really has no reason to be cranky this early in the morning yells "I can take you down here"... Maybe you're lucky and you're in a smaller waiting room. You let the lady behind the glass know who you're here to see. They ask you a question or two. Hand you a form to fill out and let you know that someone will be with you shortly... Or you spend 15 minutes standing at the counter as they run through questions extremely slowly. They can't even locate your appointment on the schedule. They give up and decide to just put you on the schedule... then they proceed to take multiple forms of identification and in the time it takes them to input your name, you've successfully fi...

Trying To Live In The Middle

Between the days filled with agonizing pain and the days marked with heavy fatigue, there's this strange middle ground I occasionally find myself in. Two days ago I was in a weird, fatigued state where I didn't want to do much but scroll through social media and watch some Netflix... That day ended as I felt the sharp pain increasing behind my eyes. I barely crawled out of my bed yesterday. I barely could bring myself to eat. I'd stand up and fall over from being so dizzy. With as much liquid as I didn't consume, I certainly had to pee way too often. I basically slept on and off all day. Yesterday's pain was probably an 11. I woke up today feeling as if I should be in some migraine fog. But I'm not. The pain is still there depending on how I move. It isn't stabbing me in the face, which to me is a dramatic improvement. But its there. But here I am. In this "middle ground" where the pain is still present, but not debilitating. Whe...

(Please Don't) Rock Me Like A Hurricane

Let me start by honoring this wonderful day. 100 years of Packer football. And who better to kick off Sunday night than meeting 197 for the iconic Packers and Bears. So, of course. My bear, isn't a Bears fan. Go Pack Go. But, on a much more serious note... Go away Florence Go. Seriously. Do I have any clue where this thing will make landfall? No. And that doesn't actually matter to me. What matters is the small key piece of information explaining that once the hurricane makes landfall over the Carolinas, it will most likely stick around for a few days. Hovering over us. A Category 4 Hurricane. Just fucking sitting on top of us. Can you spell a barometric pressure nightmare? So I could care less if they evacuate us or not. My concerns lie with getting my proper medication, having access to proper air conditioning, and being in a place where a giant storm isn't. I'd prefer to leave. And I love storms. I'd love to watch this storm roll in. I'...

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 ...

I'm Confused As To Why You're Uncomfortable

Full disclosure, I'm well aware that the people I'm talking about, won't be reading this. But this is something that needs to be put out there, on the half chance you might click and read this one post, even though you've never glanced at the rest of them. One month ago, I came to the conclusion that I could no longer work in the capacity I have been used to working. Two weeks ago, I called off for my last week of work, and decided that I 100% needed to put my focus on getting healthy, or at least finding a way to manage my pain. This decision resulted in something no one expected: I medically withdrew from my university. In the weeks that have followed, however, you've bombarded me with your disapproving comments and your blatant lack of understanding. More family won't speak to me. People keep telling me they hope that by being back home, I'll get healthier and I'll be able to go back and finish my degree. I'll be able to take full...

Introverted... And Chronically Ill

I've always been more introverted than extroverted.  I've never tried to have a large group of friends or spend all my time surrounded by people. Maybe moving so much as a kid has that effect, maybe not. It was easier in high school, back before my pain got so far beyond manageable. People always joked that people in high school were friends with other people because they were constantly with them. "Friends by Association"  But that's really all it was. Sure, I was close with a lot of people. Some people longer than others. Sure, I talked to everyone. Sure, I smiled. Sure, I knew how to have fun. I mean, I was spontaneous. I didn't ever care what anyone else thought. But, it was simply because of the association forced upon us by the schools we attended. I mean, we'd meet someone new who had half of something in common with us and we'd instantly become friends. Fast-forward and the only difference in my life is my conditi...