I’m running out of ways to describe my current state of mind. Earlier this week I had a different sense of self, and then I came home to discover I had lost my house key and the remote for the alarm. Thankfully, they were found and brought to “Lost & Found”. I received a return call the following morning letting me know they were safe and sound, and that I could come and get them, which I did on Thursday. You cannot imagine how stupid I felt in the moment, especially considering my history. I have had a set of house keys since I was eleven years old. I still have keys for every place I’ve ever lived, except my last place of residence where I tossed the keys onto the front lawn on the final day of moving. That was my way of shedding myself of the negativity of a horrible experience that is still haunting and affecting me on a daily basis. It wasn’t an exact science, but in the moment, I didn’t want to physically be carrying around a physical memory filled with pain.
I don’t normally lose something I tend to keep my eye on. That error made me so upset, and it made me question myself for days. It was an enormous “What the fuck is wrong with you?” moment, at least for me. I know many people will say I am human, no one is perfect, and/or shit happens, etc., but I take my responsibilities seriously. Anyone who thinks otherwise doesn’t know me at all.
Despite that incident, I had an extremely productive neurology consult with a new doctor. I waited nearly six months to see her, and I was definitely feeling iffy walking into the situation. After going through all of the standard questions, a quick baseline test, and doing a neuro history to rule out what I have and haven’t tried, she immediately discussed the treatment method with me that she feels I am the best candidate for. I was relieved to hear someone cut through all the bullshit and go straight to precisely what I have wanted to do migraine-wise for the past six years. I have a three to six month wait, but she feels it will be worth it, and I am hopeful. It’s by no means a cure; I will still get migraines, but after my first year of treatment, I shouldn’t be getting daily migraines any more, or migraines that last for weeks at a time. In less than three years, I have had eighty migraine-free days. That isn’t even two straight months without searing pain. To be taken seriously right out of the gate and have someone treat me with such respect was truly a bit of a shock. As I’ve likely said before, my faith and trust in the medical community is basically nonexistent. In the past year, I have met three good doctors and maybe one or two decent medical professionals, but everyone else has been a medical failure, and for me, even one medical failure is one too many.
When I explained the appointment to my brother and told him how it went, he asked me what I am supposed to do for my migraines for the next three to six months. His exact words were “What are you supposed to do in the meantime? Chew Excedrin?” It was a valid question, and it reminded me that I had not asked for an abortive, so I will call ASAP and see if my doctor is willing to get Relpax approved until the new treatment begins. Thus far, my insurance company has been very on the ball with nearly all of the things I’ve needed, so I hope this won’t become a battle. I honestly can’t handle another moment where I have to battle anyone or anything. I am mostly a basket case (which is truly nothing to joke about) on Promethazine. As it turns out, stress really DOES affect us far more than we realize.
I have seen myself decline in a dramatic way over the past year. I have never felt more “off” or out of touch with myself than I am now. Being chronically ill isn’t fun, nor is it glamorous. It is a daily battle just to get out of bed. This is something people don’t seem to realize, unless it’s happening to them.
I am having a difficult time wrapping my mind around the fact that it is June. I rarely say “I want to go back to this month and start over.”, but I have definitely been feeling like this quite a bit lately. The heat waves and then 30-40 degree drops in temperature have taken their toll on me. But from here on out, I expect this to be a disturbingly hot summer and I am stressed with the thought of trying to navigate through it. I don’t want to deal with being sick, dehydrated, and isolated. There’s not much I can really do about any of these things, but the knowledge that it’s all headed my way is genuinely too much for me.
I am trying to keep up with everything here and still live my daily life. The truth is, my daily life is exceedingly dull and unhappy. I lack the ability to be fake and pretend it’s something it isn’t. So while I am clearly not writing as much as I would like, I am still doing the best I can. I thank everyone who has stuck with me all these years, for better or worse. Having an outlet for my thoughts is important to me.
Hopefully I will be able to write more this summer. I can’t make any promises, but I can try my best. Here’s hoping I achieve more than heatstroke over the next few months.
copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
Authors’ Note: **POTENTIAL TRIGGER WARNING**
Yes, the title is spelled correctly. Yes, it’s intentional.
Most of my weekends are spent doing things I’d rather not do. The weekends were once my refuge for sleep, quiet, peace, laughter, productivity, cooking, more laughter, and space. They are now filled with rushed moments, trying to pack a lot of time into a few hours here and there. I almost NEVER get to do something I genuinely want to do, and despite the fact that I am being supremely honest about that, I can’t say it doesn’t gall me. It does. There’s not a lot about my current life that I signed up for. I find that’s a repetitive theme these days.
On one hand, a person might try shaming me by saying I don’t appreciate what I have. I don’t recommend attempting that tactical method with me. I might seem nice, but I’m not. Only someone who truly understands what I am going through and experiencing would understand why I say what I say and feel as I do. The truth is; I don’t need to justify my feelings to anyone or have them agree or disagree. They’re MY feelings. I own them, and they are accurate.
By a certain age, we all kind of find our niche and know the direction we plan on taking, whatever that direction may be. It could be personal, professional, or a mixture of the two, but the decision is made somewhere along the way to go right or left, or maybe North, South, East, or West. Some of us meet forks in the road, whereas other people see smooth sailing on the same road from the initial decision until the end of their life. My life, for some unknown reason, is one fork after another. It is an expensive place-setting with more forks than one really need have on a table called life, but there they are; ever-present and obnoxious as hell. I’m not a mermaid, you can’t dangle shiny things in front of me and distract me. Perhaps one should try diamonds instead of forks. I’m a Royal Asscher kind of girl. 😉
For a while now the saying “Different levels, different devils.” has been on a repetitive loop inside my head. I have plenty to write and say, and no interest in actually drafting any of it into a post or anything else. I don’t get writer’s block, but I do experience writer’s boredom. Let’s call me a severely bored writer for the moment. It’ll pass.
My usual desire to be creative on other artistic platforms where I have either interest or talent is also in a “bored” phase. For me to walk into ULTA and come out with NOTHING is almost unheard of. I found it kind of disturbing when I was the person who didn’t walk out with a bright orange bag.
A friend asked me how I was doing last week and I replied “I’m in a state of really not giving a shit about anything or anyone.” Not realizing that her reply could make or break someone else, she responded by saying “Oh. That’s kind of a good thing, I guess.” I informed her it most certainly is not.
I’ve been pretty ill on and off for months. I was holding up halfway decently, and have slowly started to decline. Let’s get something straight; no one should EVER rejoice in someone else’s pain or hardships. You can’t tell me I’ll feel better if “just pray harder” or if I “take a bath” and “light some candles”. Seriously?! What the fuck is wrong with people?
Your mental health, and mine, is just as important as the rest of your health. I call Mondays “Mental Health Monday” because I allow myself that time to do nothing, but take care of me. To shut everything and everyone off and allow myself to get into the correct head space to do what I need to for the week. Unfortunately, I already know that I will be badly triggered tomorrow. As a result, today was not the day I intended for it to be.
I am forced to make a heartbreaking decision. Will it kill me? Physically, no, but it will kill my soul, whatever is left of it after feeling like I’ve experienced various forms of hell for the past two and a half years. If I do it, there’s no point left for me anymore because I will finally know there’s no future left for me to return to. There’s no point in forging ahead without what little in this world that gives me hope and keeps me alive.
As usual, my brother caused critical damage to this situation, refuses to take ownership of his behavior and words, and I have no where else to turn. I have always been told that I don’t know how to ask for help. There’s a reason I don’t ask, and it’s because time and again, I’ve been shown cruelty and the true nature of others. If you genuinely want to help someone, then you’ll do it and NEVER throw it in their face. You won’t lord it over them and tell them what a horrible person they are. If you genuinely want to hurt someone, well, I’ve been hurt enough.
This week will be full of challenges and pain for me. I hate feeling hopeless and I hate feeling like I have failed when the truth is, I’ve FOUGHT LIKE FUCKING HELL to get this far. My body feels like it’s perpetually at war, and it is. My immune system fights itself and it leaves me in a constant state of fight or flight. As I type this, my heart isn’t sure if it should be calm or jump out of my chest. It’s exhausting and I’ve had enough.
I spend a little too much time in Witch City, and have for the past year. Yesterday I was subjected to more people than I EVER want to be around in close spaces for over two hours. I have never been more happy to escape crowds of people. I keep thinking how sad it would be if this was my last weekend ever. I wonder if the selfishness of others would then finally be realized.
I never get to do anything of my own choosing. But I do get to control what I write.
copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
There will be times when, to address certain issues, I will have to look back on this year and handle things that pain me. I would love to make a clean break, but as we all know, there are so many things that define us and shape our future selves.
I am praying hard for 2018 to be a better year in every way possible. Wishing you all a happy, healthy, and safe New Year!
Yesterday morning, my friend Christy challenged me to post one black and white photo each day, for the next seven days. She’s using me as her guinea pig.
No people can be in these photos, and I’m not allowed to post a caption or an explanation. I’m only allowed to post the photo. This is the first one which went on Facebook and Instagram yesterday. Enjoy the weird randomness of me. 🙂
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.
Someone wrote this with me in mind, or at least, that’s how it feels today.