Sorting It Out

I hope everyone had a restful weekend. I’d like to welcome the new subscribers who have come on board in the last few weeks. 🙂 I’m glad you find me interesting enough to follow me on my journey. Please feel free to message me and/or leave comments. I always reply.

Today was hard for me. It was the anniversary of my mother’s funeral. I still have her eulogy typed up, and every so often I go back and read it. Mostly to remind myself where I was in that moment and how far I have come since that day.

I tried hard not to think about it, but by six o’clock in the evening my stomach became ill and my current nine day long migraine intensified. The only thing I could do was turn off my computer, set it aside, take my current migraine medication, which isn’t much, and lie down with a cold pillow over my head. If you know me, you know how much I LOATHE being sick. Suffering from a long list of chronic illnesses doesn’t mean I enjoy it. These are things I never asked for and would not wish upon anyone else. I do my best to navigate each of these things, but I also have to prioritize my health as opposed to forcing it to the back burner. I neglected aspects of myself for a long time and as a result, I am sicker today than I ever was before.

I know constantly having to fight for my rights, advocate for my health and proper treatment, and always feel like there is no certainty, just battles, isn’t helping matters. People often read my posts and get offended when I say “I don’t have much of a support system.” I wasn’t aware I was invalidating people who are, predominantly, quite vacant in my life. If all you do is call me when it suits you, text on occasion, message me here and there, and ask me questions about things of no real importance to me, I don’t consider you a part of my daily “support system”. If you feel invalidated by that statement, the issue lies with you, not with me. There are plenty of people who I have offered support to and have received the equivalent of a slap in the face in response, so excuse me if I don’t deem these people “supportive”. My assessment is quite accurate.

Standing by someone while they sort through their health and unhappy situations means you don’t ever intentionally trigger their anxiety, anger, or emotional suffering. If you never say a kind thing to another person, you certainly aren’t bettering their life in any way.

I was raised by two women, my mother and Grandmother. My Grandmother would always turn to my brother and I and say “If you don’t have anything nice to say, don’t say anything at all.” My mother’s version was different. She always encouraged me to speak my truth. I was five when she told me “The truth is more respected than dishonesty. If someone chooses not to believe the truth, and they try to discredit you, at least you know you’ve told the truth, regardless of what they are choosing to believe.” Those were profound words for a young girl, but she always encouraged me to use my voice, and not allow others to attempt to rob that power from me. Having lost both of them, I know they are each in the unique position of being able to see how people treat me, to hear the conversations and comments, and to know precisely who is and is not doing their best. I am far from perfect, but I am doing the best I can.

My Grandmother was such a strong believer in family. After she passed away, I quickly saw through all the things she tried to keep in tact. Her belief in the “family unit” stemmed from how she was raised, but in truth, there was no “family” at all. There was this immense illusion. My mothers’ side of the family chooses to have nothing to do with me, and the feelings I have in regard to their behavior are things I don’t always verbalize. I try not to think about it too much because I am justified in my anger. I have zero respect for a lack of decency, lack of common sense, and basic humanity. The same is true for my fathers’ family. I witnessed so much growing up, always wondering why my Grandmother held tight to the idea of this “family” dynamic. I watched how it became nothing and continued to become less and less the day of her funeral. Losing both of my parents put everything into perspective for me.

I don’t doubt that certain people have feelings for me, but do I believe those are feelings of love? Rarely. I know my brother loves me in his own way. He steps up at times when I am not expecting it. I know that other family members love me in their own way, too, but I often feel excluded and dismissed. I often feel set aside as a person with no thoughts, no feelings, and no validity. If one more person has the audacity to say “Are you ever positive about anything?”, I will probably lose my temper.

I have never had anyone who truly knows me or anyone who follows my work deem me a “negative person”. I am my most authentic self when I am writing and speaking. I am the same way in every aspect of my life. And yet, I’ve noticed snide remarks of late that question my genuine authenticity. I have walked away before saying “Go fuck yourself.”, because I will not engage with someone who is intentionally looking for a fight and/or being an asshole. I have walked away before saying “You’re clearly projecting if you’re questioning MY authenticity. I question YOURS, but I’m classy enough to keep my mouth shut.”

Love, loyalty, authenticity, and all my friendships and relationships are some of the most important things in my life. In this, I am a supreme perfectionist who is honest about her imperfections. Someone told me last week “I can see that authenticity is very important to you, and I respect that.” When one person chooses not to see it, and everyone else sees it immediately, it is much easier to cope with one person trying to take a pot shot, as opposed to thousands of people viewing you negatively.

I am going through a lot, but I’m still the same person. I am working on myself, and I am doing the best I can. If you don’t know every single thing in my heart, you have zero right to judge me.

This week I move on to other battles. I am hoping for some downtime at some point to be able to find a sense of calm. I have a consult with a new neurologist next week, so I am hoping there’s a positive outcome there, especially since I’ve waited nearly six months to be seen. Fingers crossed for some good news.

Wishing you all a wonderful week ahead… Li

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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Every Witch Way, But Mostly Dead

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.

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Sunday Night Stress & Strife

My weekend didn’t go as planned. When things don’t fall into place, it’s upsetting and more than a little disconcerting. I am hoping the coming week will be better. I definitely have a lot of corrections to make in my life, especially after realizing some things over the past few days.

I hope everyone was able to enjoy their respective holidays, and that you all had the opportunity to catch a glimpse of the amazing Full Blue Moon. I edited the photo I’m sharing. Don’t ask me why I edited it; I was playing with the settings quite a bit and either got out of hand or became a bit cartoonish. I know I went too far because in reality, it had a greenish cast in the sky and it was so golden and rich in color. I have a much better photo I will search for on my phone. I posted it on my Instagram account immediately, for those of you who know how to find me there.

Wishing you all a wonderful week ahead. 🙂

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copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

 

Another Caturday

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I am really struggling today. 😦 My insurance company denied my doctor’s request for an MRI, so even though he got on the phone and argued with them, I received two separate letters “explaining” the denial. They want me to do six weeks of physical therapy in order for them to agree to an MRI. Does this sound even remotely cost-effective to any of you? Yeah, I didn’t think so. I will be writing my own appeal letter this coming week because, quite frankly, I don’t appreciate being told “Unless you have cancer…” as one of the reasons why they would be willing to pay for it. Most of their reasoning is bullshit, and they know it as well as I do. My doctor was at such a loss, because he didn’t understand their explanations, either. He asked me if I wanted to even pursue this further and I said “I need to know what is causing this and how to proceed. I don’t want to live with un-diagnosed damage.” He agreed with me, and I was glad that he’d spent a week arguing with them before calling me back. Very few doctors would be willing to do that.

My father experienced a lot of pain in his shoulder for months before finally listening to me and going to the doctor. He kept thinking, much like I often do, that he’d slept on it funny. An x-ray showed a broken shoulder and bones in his arm were also badly broken. The doctor was confused, because these aren’t normal breaks one gets without an underlying issue. Because x-rays only show bone (my x-rays show nothing but perfect bone), it was an MRI that showed a baseball sized tumor on his shoulder, which is what caused the broken bones and resulted in major surgery and reconstruction of the bones. It was a tumor that, when removed, it took additional time to get it out because it was bigger than what the MRI showed. I believe the words “It was more like a softball than a baseball.” were used. I don’t know what is going on with my neck at this point, but I do know I am in excruciating pain, experiencing a lot more paralysis (Most nights, I cannot move or vocalize the paralysis, so I just lie here, hoping it will pass. I am awake the entire time, even though it looks as though I am asleep. I’m not, but I can’t scream out for help.), and I can’t deal with it for another minute. Physical therapy will only result in me screaming the second someone touches me. This should be an interesting experience for someone trying to assess me.

There is legitimately too much stress going on in my life right now. Jumping through hoops for my insurance company isn’t on my list of “things I’d like to do”, but I am NOT forcing myself to do anything until I exhaust the appeals process.

As I sit here bone-tired from lack of sleep, feeling guilty that I can’t run errands like a normal person, I desperately want to sit and cry. Unfortunately, I currently lack the emotion to do so.

A rainy Saturday being ignored by my cats. When two feels like twenty, it’s terribly exhausting on top of the fact that I couldn’t sleep, have a migraine, and everything is dull and uninteresting to me. I hope I come back as someone’s beloved cat because being human isn’t all it’s cracked up to be. 😦

 

Questioning Everything

Hello everyone. 🙂 I’ve been both present and not-so present around here for quite some time, mostly from an emotional standpoint. I’m not going to apologize for that. No one should ever apologize for taking care of themselves, or the crap in their lives. If someone tells you their life is perfect, I’ve got a bridge to sell them in at least two states. 😦

My x-rays came back and showed nothing. That was two and a half weeks ago, and my doctor never deigned to get back to me. In fact, she idiotically had an assistant tell me my spine is “perfect” (If that was true, I would NOT be in excruciating pain every day of my life.) and to “keep taking the muscle relaxers” and “do yoga”. I REALLY didn’t appreciate the “do yoga” comment. This isn’t a pulled muscle or a stretching issue, not by a long shot. I told the assistant “Where did the damage to my spine go? It did not miraculously heal itself because IT WAS INOPERABLE.” Her response? “I’ll tell the doctor you’re not happy with the results.” Click. ARE YOU FUCKING KIDDING ME?! One, I never said that. Two, I stated that I wanted to find the root cause of the pain so it could be properly treated. If you’re going to “assist”, at least get your shit together. 😦 Picture the angriest face in the world, because that’s how I’ve looked at times dealing with this crap! 

I called the office today and left a message for the nurse practitioner to get the ball rolling on the MRI. They need 24-48 hours to hear back from my insurance company because apparently, doctors used to abuse the privilege of running tests and now need to run such things past the insurance. Angry, annoyed face makes her appearance.

I had an appointment scheduled with her for tomorrow afternoon, but decided to cancel. I’d rather talk with her, ask for the MRI to be pushed through, and reschedule once the results come in. It’s pointless to go in and rehash my issues with someone new, especially considering the amount of pain I am in. Just showering and get dressed is terribly painful, especially when I can’t bend down. I wake up in so much pain each day, I simply cannot commit to anything at the moment. I cannot drag myself in to the office when I can barely drag myself from one room to the next. Yes, it’s less than five minutes away, but just the thought of going in for another chat is a waste of time in my eyes. Especially since I see how much they’ve been billing my insurance company each time, and how much the insurance actually pays out. Let’s sum it up in one word, LUDICROUS. I should start sending bills to my friends/family when they call for advice!

I hate admitting this, but fighting through all of the day-to-day pain, and some extremely upsetting things I have learned over the past few weeks, has made me want to cancel the rest of the year, pretty much. There is a deep, dark cloud of depression hanging over everything. I hope & pray it all works itself out, that the impossible will soon be possible, and that changes will start working towards positivity. I hate the way I feel and when I feel this way, sharing my thoughts isn’t always wise.

I saw the new therapist last week. For now, I’ll go in once a month. Not because I feel I need it, but because it’s good to have someone in place in case I DO need it. There are some painful things coming up in my life, and in the lives of those close to me, and I might need a neutral third-party to help me get through it. I don’t love her, but I don’t hate her. I think she’s fair and I appreciate that she likes my direct approach and honesty. My doctor, apparently, said a lot of wonderful things about me to her before he left. He told her I deserved someone amazing. That means more to me than a lot of things he could have said. When someone’s perception of you is incredibly kind and positive, it’s nice to get that feedback. I am sure plenty of people don’t have the same insight into me as a person, and that’s fine, but anyone I work closely with who gets it has the opportunity to either see that in me or they can choose to see something else. That’s on them. I’ve got a hard enough time dealing with my own personal stake in who I am.

I’m writing. I am researching extensively, and trying to flesh out my characters to give them more depth. As solid as the story is, and it’s so good I can’t believe I wrote it, I know the characters need more substance. You want to get deeply enmeshed in their lives from the first chapter on, and you want to root for them. It’s already there, but going deeper is important because otherwise, I will certainly be told that the characters need more trials and tribulations. I do read-throughs on it and always think “This needs something MORE.” Being tired, in pain, worn out, and often-times triggered by the smallest things, have made me feel like I needed a break from the writing. I started research for a new project the other day. I’ve never written a crime mystery, but I’m contemplating it. Why not? It’s personally uncharted territory.

I have been managing a pain support group for well over a year now. A few days ago a member approached me to start a petition for 100,000 signatures to go in front of the President. She offered to help, as did her husband. Is it terrible that I wanted to say “Do it yourself; I’ll sign it and help you promote it.”? This is a small group of people and they only come to me with ideas that are enormous undertakings. Whenever I present something small, they ignore me. All of them. I understand that many of them assume I am a pain advocate, but the truth is, I am a patient who is struggling and can’t even fathom getting 100,000 signatures. Do I for one single second feel the current “President” gives a shit? NO. He’s trying to revoke the current status and privileges of roughly 800,000 people by what he’s done with DACA, so why the hell would he care about pain patients?! If he were a reasonable person of sound mind, I’d feel more confident that what I say will be heard. However, he’s not a reasonable person and he’s proven he’s not sane, so this feels like a fight I don’t feel I can take on. And yet, I said I’d do it. Mostly to see if it can be achieved. I don’t have any expectations.

I hope everyone had a happy, safe, fun summer. I hope you enjoy the remainder of it because Fall is definitely on its way. For the first time in a long time, I’m not excited about it, or anything, really. Each day of my life is so monotonous, I can’t bear waking up each morning. Here’s hoping that changes.

Wishing you all a peaceful and safe Full Moon.

Lisa-blue

copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

Life, On Hold

I guess late Friday night has become my new “time to write”. I have no idea when that became a thing, but let’s roll with it, shall we?

My big accomplishment this week was talking to my insurance company and getting an emergency reinstatement, all thanks to someone who knew what she was doing and was the kindest person one could hope to speak with. The best part was, as she was helping me, saying “I don’t know why they needed address confirmation. You already confirmed it twice. And I’m not seeing where they sent you a letter, but apparently they wanted confirmation by June 13th. This makes no sense.” She then told me to call back Wednesday morning. After four hours of not being able to get through to anyone (I love being on hold for an hour and then being hung up on. T speak to a person once this week, it was a six-hour wait on hold, in total, and constantly calling back whenever I was hung up on.), I finally got confirmation through the automated system that I’m “active”. Yay! The downside is that I still have to call again to see if they will reactivate the “child company” before September 1st (I spoke with them, they told me their system might update next week, but there are no guarantees.). It’s still early in the month and there’s no legitimate reason I should have an issue. However, this does mean canceling the neuro follow-up without the “child company” to pay for it, which, lets face it, I had no belief in, any way. When a doctor is out of the room before you’ve finished speaking, it’s not a good sign for things to come. He still hasn’t called me back, still hasn’t squared away medicine or ANYTHING requiring prior authorization, and I don’t see the point in going in without knowing I’m covered for the visit and two, to discuss what? Would he even listen to me? That’s a twenty-minute waste of my time and I simply don’t have the patience for it this month. I’ll reschedule, and maybe between now and then, he can figure out how to get his shit together before I write a scathing review.

I rescheduled one of the appointments I wasn’t able to get into last Friday, but the person who scheduled it informed me I would require the doctor to “discharge me as her patient” in order to see someone else. I listened to the message and “Are you fucking kidding me?” is all I had to offer. I’m a PATIENT, not cattle, not a piece of property “owned” by the overlord. I feel like it would be hypocritical to see this doctor for thirty minutes and then say “Can you discharge me to another physician because, after the way you treated me when we first met, I cannot in good faith work with you moving forward.” Doing so could cut me off from much-needed medication, and I am already angry that she put me in a compromising position with my current primary care doctor, who surprisingly came through for me. And if you’re going to practice what you preach, it is hypocritical to sit with someone you already know isn’t going to work out, merely to get a month’s worth of medication. Plus, how long would I have to wait to see someone new? The whole thing stresses me out and makes me ill. These are things I will have to bring up at my appointment next week, which is also stressing me out.

Every aspect of my life is on hold. Finishing up online classes for a certification? On hold. Starting new classes for a new certification so I can begin a career I actually want to work in? On hold. Being able to get up each morning with zero pain? Probably never going to happen. The issue with suffering from any form of chronic pain is that, if you sign a pain contract, you can be tossed from any doctor’s office if, for example, you decide to use Kratom or CBD oil as an alternative because they might look for it in a drug test. The pain I am in is so bad, all I want to do is go to the emergency room and scream until someone helps me. However, no one wants that put into their chart as “drug-seeking behavior”. I’ve never “sought drugs” in my entire life. The only addiction I’ve ever had in my life was to Polar Seltzer. I’m drinking my first bottle in months because I went off of medication based on sheer forgetfulness. In case you’re wondering, Toasted Coconut is as good as it sounds. 😉

I’m having trouble sleeping soundly. I’ve had a migraine every single day this month, and only had two migraine-free days all of last month. I’m hurting, stressed, frustrated, and fed up. I’d like to sleep soundly, wake up pain-free, and not have to struggle to push myself physically. I was hurting so bad last Sunday, I nearly passed out in public, but not before a woman who has never met me before stopped me at the grocery store to inform me I “look kinda pale”. I went into the stores’ restroom and took a look at my face. Nope, pale is my natural skin-tone. If you don’t know me and have no clue what I look like on any given day, it’s incredibly rude to approach a stranger and say “You look kinda pale.” I turned around and said “Are you being cute?” I was annoyed. It wasn’t the concern of someone stating I didn’t look well, it was something else, and quite frankly, combined with my eye makeup, I wouldn’t have approach ed me at all. The colors I’d used sort of made me look like a vampire. I didn’t notice it until after the fact and once I’ve finished with something like that, I am not taking it off and starting over.

I’m having terrible difficulties writing the things I want to write. After months of research and trying to get the ball rolling with an article revolving around chronic pain patients and the reduction of medicine we’re experiencing as a whole, I’ve had to focus more on my own health than I would normally be able to focus on a body of work. And since then, plenty of people have come forward and written things from their own perspectives. It sort of makes me wonder if I should bother at all, which bugs me, because I don’t like starting something I’ll never finish. It makes me feel like a fuck-up.

Yeah, I’m hard on myself. What might normally work for others in terms of decompressing only manages to stress me out more. I hate hearing these terms “breathing exercises” and “mindfulness”. It’s reached a point where I will throw something hard at you if you mention either. I cannot breathe past the pain I am in, so please spare me the nonsense. I’m plenty mindful, yet apparently not mindful enough for people who preach about it. And yeah, I lack the ability to “go with the flow” because the “flow” is monotonous and makes me want to walk in front of a truck.

No one wants to “exist” and wonder what their purpose is. People keep turning to me with “pain advocate” or “pain activist” issues and here’s the thing; I am having a hard enough time advocating for myself. For someone who has been told I am “always incredibly articulate”, I feel like an absolute moron trying to explain how badly I am suffering and how all I want is relief. I imagine this is what happens when your body is experiencing too much pain on a daily basis with no break. I have NEVER outright said to any doctor “Give me pain meds.” Never, and yet I feel distraught at the thought of being forced into a pain contract or worse, having a year-long (possibly longer) wait to get into any form of pain management. Pain management in Massachusetts is everything BUT pain medication. They will even prioritize surgery over managing your pain. If you will willingly implant a pain pump into my body, but are afraid to give me real medication in that pump, then there is no valid reason for me to put myself through surgery. I’ve never had surgery in my life. I still have both of my wisdom teeth, mostly because I’m stubborn. I know they will likely have to come out by the end of this year, and I’m kind of okay with that, but that is far less invasive than something being implanted into my body that may, or may not, work. See how stressful it all becomes when you think about it?

This is, by no means, the life I signed up for. I had dreams, goals, and things I wanted to achieve. And yet, as I sit here, my entire fucking life is on hold. I, for one, hate it.

copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

Stressful Sleepless Nights

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.

Not Okay

I’m not okay. I’ve tried to be, but ultimately, the first person I have to be honest with is myself. If you start lying to yourself, you can convince the entire world that everything’s fine while the house burns down around you. Everything is absolutely NOT fine because I am NOT fine.

Today was my last appointment with the doctor I’ve talked about; the one I actually like and respect, and that will never change, not unless he runs me over with his car tomorrow, a strong possibility since he’s probably read my work at this point. 😉

While I joked about super glue and other things, I walked out afterward and I thought I was all right, but I’m not. I appreciate the fact that he gave me additional time and didn’t once look at the clock, that we had a real talk, etc., but I caught myself in tears on the drive home. I expected to see black streaks pouring down my face as I quickly glanced in the mirror, assuming there had to be a horrific mess, some evidence that I was as upset on the outside as I was internally, but there was nothing to be seen. Origins GinZing mascara will be getting a ten star review, and let me just say that it’s not even water resistant, leave alone waterproof.

But I digress; there’s a very long waiting period for a therapist. The person I met with was temporary. The only difference is, she immediately disclosed this. However, I don’t need another temporary person to speak with or see every two weeks. I don’t have time for that. I’ve got nothing to say. I also don’t have it in me to build a relationship with someone who is a temporary fix. It’s like putting a Band-Aid on something that requires stitches; and I’m NOT okay with that. It’s also a lot like dating someone for no reason. Why would I bother?! I do NOT like wasting my time. She was perfectly lovely, but what’s the point?! A cushion to fall back on if no one else wants to take me?! This system is so fucked up, it really hurts me. There are people in far worse condition than I, and you’re making them wait six months, or longer, just to get in the door. I will be called in almost two weeks to find out if there’s an opening for me with someone, but if there isn’t, she is willing to see me on a temporary basis. In all honesty, I might say no until there is an opening. It’s exhausting dragging myself there every two weeks as it is. I openly admit, I was doing it to see the doctor because again, I really liked him. Ask anyone; I don’t like people.

When he said “Let’s find you another me.” I replied, “That’s not gonna happen.” (Not unless he’s been cloned, in which case, he really ought to talk to someone about that.) and he said “Okay, let’s find you someone else with a prescription pad.” (The expression on his face was so funny, I laughed. I told you he had a great sense of humor.), despite the fact that I’m only taking a PTSD drug. He did recommend someone else, but honestly, in this moment, I’m not interested in seeing her. I plan on calling him before he leaves for a refill and just leaving it at that for the moment. I don’t take it nightly and a refill should get me through the summer until I’m ready to pursue another doctor, whether it be who he suggested, or not.

I feel like a fucking tennis ball. In a dog’s mouth. I feel so absent within myself. I came home, fed Cat & Kitten at exactly five o’clock (Believe me, they both thought they should have gotten fed the second I walked through the door. They’re OBSESSED little vixens.), washed my face twice, changed my clothes, and after a texting session with my sister, Britt, I fell asleep like the dead. I am so physically, mentally, and emotionally drained that I just want to sit somewhere and cry for the next week. Technically, I can do that, but in all likelihood, it won’t happen. I’ll bottle it up until I have a breakdown of some kind and I’ll keep bottling it up until I snap.

The best compliment I came away with today was “You know yourself really well.” For someone to observe that over six weeks, is a nice feeling.

I’ve never been a fan of square one. It makes me sick. However, I think I just need some time, and space, to think this through.

Wishing my neighbors to the North a Happy Canada Day & my fellow Americans a Happy, Healthy, & Safe 4th Of July weekend!

copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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