Dazed, Confused, and Out Of Sorts

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.

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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.