Thursday, February 13, 2014

My Situation: The Updated, Unabridged Version




So If you've been reading my blog for a long time, that means you've read this post, and maybe even my "About Me" page. That was to help you guys understand my life. This post is to help me understand it. I don't care if you read this entire thing or not, because it's going to be long. 

So, let's take a walk through my past, shall we? 2006, leaving school for the first time because I didn't feel well. I don't remember much before this, or much about that day even. But it's important, because that's the first time I had a headache, so I'm told. They came more often after that - once a week, maybe. Shortly after that, my pediatrician recommends that my mother take me to a neurologist, who after speaking with my mother for an hour, decides that I'm suffering from chronic migraines, but not the usual kind. Mine spread throughout my entire head, leaving me virtually incapacitated until it subsides. I'd had stomach aches my entire life, which she said were connected somehow to the migraines.

Fast forward to 2010; By this point I've seen a dozen doctors, been on hundred of medications, and tried everything from biofeedback to oregano supplements. My migraines are every second of every day now. I've been diagnosed with fibromyalgia, though nothing has treated it yet, and I now find myself sitting in a clinical-looking room, with a group of nursing student gathered around me. The latest in a long stream of doctors has detected Lyme Disease in my blood, and decided that three weeks of IV antibiotics are the way to kill it and fix me. I'd had IVs in my hands before, but they had been placed there while I was asleep or under anesthesia, so I wasn't sure how much it would hurt. "It feels just like getting bloodwork done!", my doctor had promised. I was okay with that; I got bloodwork done once a month anyway, under her orders. It never hurt, so long as it was done with a small needle and a skilled phlebotomist. 

I was never more wrong about anything in my entire life. An hour later, both my arms were covered in warm compresses, and I couldn't stop crying. The nurses had attempted to get a permanent line in on my left arm, but after 14 attempts on the left, they decided to try again on my right. 12 more attempts at getting a permanent on my right arm, and they gave up and decided to try a temporary line. One of them explained that it would only last a few days at best, but all I could do was gasp and cry in pain. The temporary line went in with ease, and one of the nurses took pity and let me watch TV on her iPhone while she got me some food from Subway (being stabbed in the arms 26 times makes you feel surprisingly weak). I couldn't stop sobbing until I fell asleep that night. 

My arms hurt the next day, but the place where my temporary line was securely taped didn't hurt nearly as bad as I had expected. Later, the Home Health Care Nurse showed up to administer my IV meds, warning me that I might feel a bit of pressure in my arm while the medication went through. I braced myself, but nothing prepared me for what I felt a few minutes after the medicine started flowing. It felt like someone incredibly strong was crushing my arm, and I couldn't help but cry. The nurse, Mindy, stayed with me and held me while I cried. Hours later, the crushing pressure eased, and I managed to fall asleep, until I woke up for several hours around 3 am; the crushing pressure had returned. 

This happened every day for three weeks. I'd wake up, Mindy would come in the afternoon, and I'd feel that pressure again, almost unbearable. I'd fall asleep, and wake up in the middle of the night with the same pain in my arm. By some miracle, each of my temp. lines lasted a week, so I only had to go through the stabbings twice more. To this day, I regard those three weeks as the most traumatic experience of my life. 

Fast forward again, this time to December 10th of 2012. My newest neurologist and her assistant are giving me Botox injections as migraine treatment, 21 in all throughout my forehead, scalp, neck, and shoulders. Dr. B warns me that the stuff used to dilute the Botox may burn for a little while. The injections weren't too painful, largely because she let me take a few breathers between sets. But the next day, the burning from the Botox hadn't stopped. Dr. B told me to keep an eye on it, which was what I did until December 14th, when the burning suddenly spread throughout my entire body, and I had to be taken to the ER. The doctors concluded that I'd had a violent allergic reaction to the Botox, and put on an IV drip of anti-inflammatory and Morphine, saying I could leave that night. The Morphine made me incredibly sick, but I was told it was safe for me to leave. I wasted no time getting out.

Fast forward one final time to now. My migraines and fibromyalgia are still every day all day, and I've yet to find something that worked. I'm still trying.

So there. You've got a lengthy version of my medical history. But that's not what I wrote this post for - I wrote it to talk about what I was too afraid to talk about in my original post: my mental health.

I used to go to a school here in New Orleans. I was bullied there, mostly by students who didn't understand why I got special treatment or resented the fact that I was different. Their favorite game was: "Let's Keep Track of How Much School She Missed and Taunt Her With It!". Because you see, my school had a policy that a student could only take 9 sick days per year, and in my final year there (2010, just before IV Torture), I'd already missed at least 45. I'm certain the only reason they let me stay as long as they did was due to a LOT of letters from my doctors and many angry phone calls. It wasn't perfect - the principal made sure I was kept out of honors, plays, and other school functions - but at least I was getting an education. It wasn't until I'd missed two entire weeks of school that the school gave up on me. The principal told us that I could either leave or be expelled. A few days later, I took my last walk down those hallways, no longer a student of the school I had called home my entire life.

I became depressed. I barely got out of bed except to eat, and it seemed too much of an effort to lift my head. After a month or so of this, and realizing that only a handful of my "friends" from that school had actually bothered to keep in touch, I started learning to live again. I started homeschooling, but avoided social situations. I wasn't ready for that.

The thing is, I didn't want to leave that school. Yes, it was a crappy place for me. But it was home. It defined me as a person. I was the smart girl the other kids asked for help. I was on a winning Quiz Bowl team. I was a school ambassador. I spent months preparing for cheerleading tryouts that I wouldn't be around to see. For a while, I felt like a man without a country. 

And then, about two years ago, my health got even worse. The migraines intensified. The fibromyalgia was so bad that even simple motions felt like torture. I fell behind on my schooling. And to make matters worse, I developed a Panic/Anxiety Disorder.

So that's where I am now. Daily pain and anxiety attacks. Still behind on my schooling, barely able to think about anything without feeling the sudden, crushing, terror of an anxiety attack. But also still trying. Trying to get out of bed in the morning. Trying to breathe. Trying not to cry. Trying to live. 


Over the past year, I've learned more about myself than I ever thought possible. I found healing in the most unlikely place: fantasy and fiction. It started with watching Doctor Who, discovering the feeling of being part of a community of people that all love the same thing. I found other fandoms like it. Supernatural, Harry Potter, Percy Jackson, etc. It wasn't just the feeling of being part of something, though. It was looking at these characters, and seeing a part of myself mirrored back at me. They all suffered, and were better for it. They helped me heal, in some weird way.

I met people who helped me heal, even if they didn't know a thing about what was wrong with me. Emmy, Florian, and finally Lauren, who's been to hell and back just like me, and became my best friend in the process.

So this post isn't just an explanation, or a way for me to sort my thoughts. It's a way for me to say thank you to the people who have helped me, whether you knew you were helping me heal or not.

Thank You.

6 comments:

  1. That's really mind blowing and I feel honored to be a part of your life everyday! You're such an inspiration in your posts on your own blog, as well as being a part time writer for me. We all have hurdles and you will find something to help! Keep trying, never give up!

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    1. Thank you so much, Meredith! You're an amazing person to work with.

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  2. do you have a tumblr by any chance? I have a myriad of mental disorders (asperger's and OCD among others) and my girlfriend has a chronic pain disorder (ehlers-danlos).

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    1. I do, as a matter of fact. It's winchesters-on-gallifrey.tumblr.com, and although it's mostly related to fandoms, I reblog a lot of health related posts as well. I'm so sorry about you and your girlfriend's disorders. If either of you ever want to talk, please don't hesitate to shoot me an email!

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    2. is it okay if I started following you?

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    3. Absolutely! I followed you back :)

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