“I just want my stories to be mine.” ―Lidia Yuknavitch
I could not agree more. I don’t settle. I was raised to reach for more.
“The beauty of a woman is not in a facial mole, but true beauty in a Woman is reflected in her soul. It is the caring that she lovingly gives, the passion that she knows.” ―Audrey Hepburn
“The essential conditions of everything you do must be choice, love, passion.” –Nadia Boulanger
I have long since passed “tired” and have reached a state of pure “painsomnia”. No matter what I do, I am in too much pain to sleep properly, if at all. Physically, mentally, and emotionally, I’m not in the correct head-space to allow my body to rest as it needs to. It’s twisted when anyone who suffers as much as I do is completely unable to sleep at times.
Most nights I am sound asleep by three a.m., if not earlier. Last Wednesday night, no matter how many times I tried, sleep alluded me. I had my alarm set and finally got frustrated and said “Fuck it!” I knew there was no way I was going to fall asleep because I couldn’t shut my brain off and the pain I am in is over-the-top excruciating. When you cannot see past the pain you’re in, it’s bad. Pain, as it turns out, is a definitive breaking point. It is exhausting, it is draining, and it makes you feel insane. Your entire body goes on high alert.
I have tried everything to break this cycle, and yet here I sit, trying to figure out how to reach some type of “pain-free” state. But really, what are my options? The emergency room? Kratom? CBD oil? I have NO idea. If I understood the root cause of the pain escalation, I could at least handle it from a medical perspective and make a decision as to how to proceed. However, I am being waylaid by every single doctor that is supposed to be treating me. And lets face it, Kratom and CBD oil aren’t covered by insurance and they can be quite expensive over time. Yes, they are natural methods to relieve pain, but I can say I know very little about CBD oil, despite extensive research. I only know some people swear by it and others say it doesn’t help them, which definitely makes me question the enormity of such an investment. A friend even found a company willing to give me a huge discount, but still, it’s a lot of money for a “What if?”
I have an appointment in a few weeks with my soon-to-be fired primary care physician. The first time I was in her office, I noticed she had pain contracts for her patients in each room. It left me sour on the whole thing because I also noticed an influx of patients that were clearly there for monthly drug tests and new prescriptions. The restrooms are FULL of testing supplies. It looks more like a lab. So, while prescription pain medicine is covered by my insurance, do I want to subject myself to monthly drug tests? No. For one, I’ve never taken narcotic pain medicine daily, and if I did, it was in much lower quantities than prescribed. I’d fail a drug test because I don’t take six pills a day, or however many might be prescribed if I were lucky enough to be taken seriously. Asking me to “bring my bottles” so my pills can be counted and “pee in a cup” each month is treating me like a drug addict when in fact, I am a pain patient. Moreover, I find it interesting that I had to wait two and a half months to be seen for something serious, but she can see other people monthly if they’ve signed a pain contract. It’s insulting. She flat-out said, via that infamous e-mail, that I should “go to the emergency room” when I have a paralytic attack. As if they happen daily and I am able to call for help during said attacks. Instead of being a responsible physician who orders the correct tests prior to my coming in, she blew me off. I will be printing up the entire exchange before she has the opportunity to delete any such evidence. They might just be e-mails, but I honestly never know what a doctor might do to cover their own ass.
I have ZERO trust or faith in this woman to properly treat me, and that is precisely why I have to move on. The second I have a scheduled appointment with the new physician, she will no longer be listed as my primary care doctor. I can still switch at any time. That is a comfort because I’m sick of not being taken seriously.
My migraines are still eating away large chunks of my life. It took the neurologist quite a while to get back to me, but when he did, it was a short message to tell me he could put me on another class of medication. I called him back and said “I’ve been on all of those already; they don’t work.” If he’d requested my chart from my previous neurologist, he would know all of this already. He did not address my request for Relpax or a new anti-nausea medicine, he skipped over it like I hadn’t said anything in the three messages I left for him. I’m sick of playing phone tag. If he can’t get this straight, I can’t keep my appointment at the end of next month. It’s an inconvenience to begin with and the man lacks the ability to listen and actually hear you. It’s not my job to do his for him. Why should I repeat, and pay for, previously failed medications? I care about the crazy chemicals that go into my body and as a patient, I have the right to say no. I played stupid when I said “My insurance does cover Relpax, they just need to hear from you.” and “I belong to a migraine support group and this anti-nausea drug is talked about a lot, do you think I can try it?” A close friend also recommended the anti-nausea medicine, but he only needs to know the basics. Instead of appreciating the fact that I’m an educated patient, he would much prefer for me to be a moron that simply says yes to everything he says. Yeah, that’s not going to happen on my watch.
I’ve decided that if I can’t survive this coming week on over-the-counter pain medication for my back and neck, that I am going to the emergency room. The doctor can kiss my ass if she doesn’t like the decision because ultimately, the hospital CAN admit me, even if only for a few hours, and run all of the necessary tests. If they did, for example, do a drug test, they would find I am 100% drug-free, so they wouldn’t be concerned about giving me pain medication, providing they deemed it necessary. Trust me; I’ve never thought it was more necessary than I currently do. I’ve had broken bones hurt a hell of a lot less than my back and neck do. 😦 I can’t even sit up straight or do anything to stretch my muscles out gently without causing the pain to worsen. And yet, I am the moron popping Aleve, using a heating pad in July, and alternating with ice packs because I am also running a fever. But according to the physician’s assistant “It’s probably just the weather or like your allergies.” If you are trying to be any kind of professional, drop the Valley Girl routine. It’s not cute.
This week I get to meet a new doctor and someone who I believe will be temporary. I’ve once again been handed over to a student, after specifically requesting “no one temporary” (I heard myself say it, so I know it’s not my imagination.), and I will likely have something to say about that after the fact. I am on an incredibly short fuse, so I’ve decided that both people get exactly two chances with me, if that. I legitimately don’t want to go, don’t want to discuss a damn thing except the outrageous amount of pain I am in, and don’t want to waste my time, but again, two chances. If I’m feeling nice (I’m rarely nice.). I hate forcing myself to do things I am not okay with. Chances are if I can’t stand the sound of your voice on the phone, we will NOT get along well in person. I know precisely how intense I can be, and I’ve only recently realized it’s because I’ve been badly burned by certain types of people and I won’t allow the cycle to continue. While some people will say, and have, “You enjoy giving off the impression that you’re a bad ass.”, I don’t think it’s actually occurred to them that I AM a bad ass. You can be a lovely human-being and STILL be a bad ass when you have to be. Believe me, being a bad ass is far better than wearing “the bitch card” 24/7. A bad ass is a position of power where you make all of the important decisions and stand your ground, and it trumps being a bitch every day and twice on Sunday.
I once questioned who the hell a person was without passion; without something they stood for and believed in. I said this in observation of someone else. I said something along the lines of “What does she stand for? She lacks passion. She’s too worried about what others think of her to concern herself with what she thinks of herself.” I vowed not to become a person like that, to always know who I am and what I stand for. So whether it’s advocating for my health or speaking my mind about something specific, I want to come in fighting strong. I feel like hell, but I do not have to look like hell and I don’t have to ever act weak because I am NOT. I am human. I have horrible, bad days. I am stressed, functioning on no sleep and very little caffeine, and there are days I want to break down and hide. But ultimately, I don’t have a choice in the matter. I am doing my BEST. It sucks, it’s not easy, and there are days where I live in pure fear of how far I have fallen, but no matter what, no one will ever be able to say I had zero passion or thought.
She is brave, she is strong.
She will get up whenever she falls.
She knows herself inside and out.
And though she may face challenges,
she will face them with courage and hope.
And though she be but little,
she is fierce. -William Shakespeare
copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
“Believe in your heart that you’re meant to live a life full of passion, purpose, magic, and miracles.” ―Roy T. Bennett
For the last eight months or so, I had silently convinced myself that I was abandoning the manuscripts for the series of novels I began writing in 2010. Before you scoff and judge that length of time, note that I wasn’t writing “just one thing”. I was writing multiple manuscripts (hence, a “series of novels”) in order to fully develop the story itself, as well as characters I know like the back of my hand.
My intense desire was solely to walk away from editing because it is so bloody thankless and is barely paying pennies. My inquiries look a lot like this: “Hi, I’d like you to edit 96,000 words in 24 hours and I am willing to pay $10.” Now while I politely decline these jobs, my first thought is “I’m not working 24 hours straight for $10, and I don’t know anyone with an ounce of talent who’d agree to that. Dunkin’ Donuts doesn’t even pay $10 an hour, who are you playing with?” I don’t say it, but damn, it’s unbelievably insulting. For the record, my hourly rate is $40, unless it’s a first edit, and it’s by no means an unreasonable rate. I know people who charge double and not necessarily out of talent, but because they’ve chosen to put a higher price tag on their time, but not without a mind-fuck of a “reason”. I didn’t go to an Ivy League school to be able to apply said price tag to my work (that’s THEIR reasoning), but it’s still in the top ten. I also didn’t major in things that make me want to gag, like English Lit, Journalism, etc. I’m more interesting than that, and I have more experience. I also try to give people a fixed rate payment plan, that way they’re paying every 2-4 weeks, the work is being done, and they’re not shelling out a large chunk they don’t have all at once. While many people want to be writers, and I don’t knock that, they aren’t quite prepared to pay and deal with a real editor. It’s time-consuming work and as someone who goes over a manuscript twice, I don’t think pennies are acceptable to be tossed in my hard-working direction.
Somewhere along the line though of feeling used & abused by something I’ve done for so long, I realized I had also abandoned a lot of my hard work. I may not want to edit other people’s “work” (I use that term quite loosely. Some people have no idea what it takes to truly write something that doesn’t stink to high heaven.), but my work should be an entirely different story. You don’t write as long as I have and say “Okay.” to leaving solid work on a hard drive, thumb drive, etc. Sometimes you will have a legitimate reason for leaving a body of work behind (You don’t forget it, but you do shelve it for a later date, perhaps.), but I have no solid reason, and so, it was time to delve back into MY work.
The other day I decided to re-visit the first manuscript in the series. My first impression was “Holy crap, look at that word count! I remember when I couldn’t break 11,000 words.” But as far as the actual written work is concerned; I was completely spellbound. There is nothing like getting completely wrapped up in a story. I read several chapters, became immersed in the minds of each character, and then I had a moment when I realized that I was the one who had created this from scratch. At first my internal dialogue was this, almost verbatim: “This writer is GOOD. So talented. So creative and smart. I wonder what else they will create, because this is EPIC. I’d BUY this. Hell, I’d pre-order it!” It took about fifteen minutes before I realized I am the writer I was having internal dialogue about. It doesn’t always sink in. You will have fans and you will have detractors. In my life, I predominantly have detractors (mostly in my personal life), and so, hearing anything positive is so foreign to my ears and equally as foreign to my eyes. I’d rather be told I’m a talented writer than have someone think I’m pretty. I’d rather be told I am funny and/or smart than have someone dwell on the superficial. And when it comes to my work, I am immensely private with the work-in-progress itself, the ideas, the characters, all the little nuances, and the actual manuscript. Having had someone steal my work in the past and try passing it off as her own, I’ve learned that you can never be too careful with brilliant ideas. It may not be brilliant to every single person that reads it, so ultimately I have to be impressed and surprised that I’m the one who wrote it. I have to continue to impress myself, because I’m the first set of eyes on this work and I believe in my ability to tell a story.
So, despite my deep passion for the new, creative journey I am on, one in which I feel is positive and will break me out of the shell I’ve been in without realizing it, I have decided to continue polishing up the first manuscript before submitting it. The story deserves to be told.
I can create on two completely different levels. One does not interfere with the other. I feel blessed to have come to this conclusion on my own and I look forward to discussing the progress in the future.
I hope you all have a wonderful weekend where you, quite possibly, have some self-discovery of your own. 😀
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.