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.

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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.

Doctor & Patient: The Follow-Up

**Potential trigger warning**

“Exigo a me non ut optimis par sim, sed ut malis melior – I require myself not to be equal to the best, but to be better than the bad.”

I think my doctor is a compatible astrological sign and/or is perhaps magically able to defuse angry women. I realize sometimes it’s a little like talking to a cornered animal or a small child, except when it’s me, because I can’t be likened to either. I’m more like a venomous tornado; if tornados could have that additional level of power.

I genuinely give him credit because he handled my appointment with grace, class, ease, and owned his mistake. I can count on one hand how many doctors I know who would have owned up to a major error. He’s maybe one of three, if that. He is in the teeny, tiny minority because he has managed to maintain his humanity, sense of humor (I’m pretty certain his sense of humor is one of the reasons I like him so much. I can genuinely appreciate someone who has the ability to match my level of sarcasm, snark, and wit. It’s rare.), and the ability to stay grounded. I hope he never changes, because it would be a damn shame. I walked in enraged, and walked out laughing. I’m not that moody, not even for a Scorpio, but again, refer to my opening line.

I spoke, he listened, and we discussed possibilities for me to meet with someone who fits the criteria of what I need moving forward. He could have blown me off; instead he tried to problem-solve, and that is going above and beyond in my eyes. A far more jaded doctor would have passed me off to someone else, simply for being honest. God forbid you point out to another human-being that there’s a flaw in the system, or that they, themselves, are not perfect. Denial is not just a river in Egypt for some.

I’m proud of myself for handling this without reverting back to the old, angry version of myself who definitely would have handled things in a much more brusque manner, and brusque is soft considering it isn’t my original choice of words. Despite being angry, I was calmer than I thought I’d be once I sat down. I know the initial look on my face was anything but cute, but that frosty demeanor is my usual, unapproachable “Don’t fuck with me” look. I have scared postal workers with that expression; I know it’s not a good face. My doctor, all credit to him, seemed concerned, but unphased. He knew something was wrong, he just didn’t know what it was. Once he heard me out, everything was okay. In no way, shape, or form was he pacifying me, nor did he come off patronizing. I know the difference, and I would have walked out if he’d tried it. He’s too smart for that level of nonsense, and he earned another layer of my respect for keeping things real.

I know a lot of people would not have gone back. Many would not have been able to go back and be honest with him, but I’m no ordinary patient. I believe in full disclosure, even if I keep certain things private and keep pieces of myself to myself. I still don’t believe in accepting bullshit from anyone and eating it politely with a knife and fork. That’s not my style, nor will it ever be. I lack the ability to bite my tongue. I’d rather be honest and say what I’m feeling, as opposed to keeping it inside. That’s not healthy.

As I write this, it seems as though my ulcer is acting up once again, so I definitely don’t have time to hold any more stress or anger inside my body. I need healthy outlets, and writing has always been my first line of defense. It’s one of the clearest, most concise forms of communication. You don’t write as long as I’ve been writing if you don’t have something to say and have some serious talent to back up the words, otherwise, words are just that; words.

Did I feel better walking out of this appointment? A little. I’m glad I was myself and got the majority of the anger out of my system, but ultimately I still came away upset, just not at the doctor.

He admitted he wouldn’t have asked me certain questions if I’d looked more closed off. If I had looked like I had a wall up, he wouldn’t have dug so deep. Apparently my “packaging doesn’t match my pain”, his words, not mine. I do like him, so I let it slide, but that comment stayed with me for days and it’s going to bug me.

I immediately wanted to point out that just because a woman has makeup on, it doesn’t mean she’s an open book. Yes, I answered his questions. I did side-step a few, whether he noticed or not is another subject entirely, however, is wearing makeup what’s hindering me in getting proper care? It made me wonder if this has been an issue for the past ten years or so; the simple fact that I don’t walk into doctor’s appointments looking like death, which is usually how I feel on the inside. Do I need to walk in a drooling, incoherent mess? Is a face REALLY all people are paying attention to?! Is everything artifice? I do believe it’s called an “Invisible Illness” for a reason. Thirty minutes of my time, or less, to look human may seem ridiculous, but that time calms me down so I actually go to the damn appointment. Some doctors recommend coloring books to their patients as a form of therapy. Well, makeup is art therapy for me. It wasn’t even my best work, it was just mindless self-expression. Let’s not judge the broken, pretty mess by her “packaging”. Let’s not make assumptions. It sort of makes me want to show up in sunscreen and mascara next time, just to screw with him. However, that’s my “It’s over 90 degrees and I’m going to the grocery store in sunglasses” look. I try to look a little more human and pulled together when I’m face-to-face with someone. Not because I am trying to impress them, but because it’s something I do for me.

In hindsight, I realized that nearly all of my doctors, both past and present, are men, save two. I read a report about myself once that said I was “impeccably well-groomed” and it angered me. Obviously the doctor who wrote it has zero idea what it takes for me to be so “impeccably well-groomed”. I have an appointment in August, but I’m not about to ask another woman how she feels about my eye shadow blending skills. <rolls eyes> The first time I was there, the nurse went on and on about how good I smelled. That’s such a girl thing because my friends do it all the time with me. Women notice things that men do not. Men are more visual, but I don’t wear makeup for men; I wear it for me.

In my dealings with my beauty blog, I have sponsors, so I’m occasionally paid to write honest, unbiased reviews and I’m constantly trying new products revolving around hair, nails, skin, and makeup. It’s something I do for fun, something I hope will one day become more. However, the pain I experience has already held me back these past few years in terms of expansion, of starting a YouTube channel, and branching out. I re-branded last year, but my confidence levels are nonexistent, so if I’m not comfortable posting a photo of completed work to Instagram, then I’m definitely not ready for a camera in my face 3-4 days a week when I need to be filming.

Despite support from friends and family that I am definitely skilled enough to do it, I don’t feel ready. But does that mean I should be taken less seriously when seeking medical help? NO. Don’t judge a book by its cover. Or in my case, its skill-set. That’s not even 1/100th of what I can do in this world, and by judging me for it, you’re taking me down to less than a millimeter. That’s an unacceptable thought process. I personally know some of the most stunning people who are suffering just as badly as I am, and if you didn’t know them, you wouldn’t know what is going on because they have trained themselves to fake smiles and laughter. I will never fake a smile, not will I fake laughter or any other emotion, but yes, I will use an art form. I assure you, it’s not a mask, it’s just product.

After my appointment someone asked how I was feeling mentally, and I said “Let’s face it; I’ll never be okay. This is not fixable. Maybe if someone had done something to help me when I was six, or seven, or eight, I’d be okay now, but they didn’t. I feel neglected. I feel like my life isn’t my own. No one should have to carry this pain with them, this knowledge, and have to keep on living.” I then realized I’m deeply upset, and there’s no fixing it. I could go to a hundred doctors and there’s no cure in sight. I don’t know if there ever will be. There are always new medications in the pipeline, but a cure? No one ever talks about that, do they?

Ultimately, I am who I am; imperfect, shattered, hilarious, loyal, honest, goofy, inappropriate, sharp, creative, determined, the family protector, a permanently exhausted night owl, incredibly direct, a girl’s girl to the core, the person everyone turns to in a crisis or for advice, the girl “most likely to take a bullet for you”, the person described as “part lawyer/part doctor/part pitbull”, the psychic/spiritual guru for friends and for many of my close family members, mother to Cat and Kitten, a kickass Godmother, a truly amazing sister, an introverted extrovert, the girl who’ll sing anywhere because she hates wasting her voice training, the very best friend anyone could ever have, and the last of the matriarchal cooks in my family. I wear so many hats and own so many titles. That’s my “normal”.

In all the positivity, there is also a lot of fucking pain. You can’t mask that. No one sells “You’ve been through hell” concealer (I’m trademarking that, so don’t get any cute ideas.), or everyone in this world who suffers from an invisible illness of any kind would be stocking up. I look in my own eyes and see it. They may look sparkly and green in the right light, to the right person, but to me, that’s predominantly a sign of intellect and personality, nothing more. I have a dark, twisted sense of humor. People either enjoy it or they stare at me and say “I don’t get it.”, which usually results in the response “Bless your heart.”, mostly because I don’t have time to explain it to someone if it goes over their head. I’m quick-witted and even quicker with my sarcasm. You either get it or you don’t, but it’s not intended to be offensive, unless my tone changes or I intentionally speak a different language in
front of you.

Suffering from depression isn’t just abysmal highs and lows. For me, it’s living in pure darkness and trying to find shards of light scattered here and there. Light comes in many forms for a creative type. I love learning how movies are made. I am fascinated by certain aspects of history. Certain artists intrigue the hell out of me, and they remind me I should be painting twice a month. I actively study parts of the world that most people will never see in person. I learn new languages. I have traced my ancestry back to 85 B.C., which was no easy feat, and I’ve researched cats so thoroughly that you can ask me anything about domestic or big cats. I never stop learning. And yet, I openly and honestly discuss suicide in the same breath. I don’t believe in hiding it. I don’t believe in masking the pain or lying. I’m not going to sweep it under the rug and pretend. Pretending is what gets you into trouble.

Last month, one of my cousins tried committing suicide via overdose. It deeply affected her oldest daughter and other family members; justifiably so. While they are all taking it personally and questioning the kind of person she is, offended that she lied to them or simply didn’t disclose how badly she was suffering, I’m the one person who seems to truly understand how much pain she is in to have hit rock bottom. I know how awful it is, and I refuse to sit in judgment of her for it. In fact, all I want to do is help her. I’m sick of their attitudes. They’re acting like it’s all about them when the truth is; her pain has NOTHING to do with them and EVERYTHING to do with being strong for decades and finally breaking down. I didn’t realize how deeply it affected me until I broke down in the shower one day. I am deeply concerned, especially now that she is back in the hospital and continually tries to manipulate doctors, friends, and family into letting her out. This is the person in the family who would personally kill any of us if we tried to do something as stupid as what she did, so I KNOW this isn’t her, this is merely illness and an extremely dark, low point. What they deem as selfish, I see as a diamond in a pressure cooker. That’s precisely how a doctor once described my own situation to me. I try to remember those words whenever I reach my breaking point, but it’s not easy to hold on to mere words when your support system is nonexistent.

I spend 97% of my time alone, in pain, so how could I not think about suicide? Between the stress and the isolation, it’s hard not to. and I refuse to lie or pretend. I’m not good at being fake.

There are days when I’m taking a long walk, just to clear my head, and there’s this little voice hoping I get hit by a truck or a bus, or a car not paying attention. Unfortunately with my luck, I’d be in a body cast and no one would ever think anything except that the driver was an idiot who didn’t see me. No one would ever think I had anything to do with it, and for the most part, I likely wouldn’t be thinking about it either because I have “city brain” and I’m very careful when I’m walking, but there have definitely been moments where I’ve nearly been hit because a driver wasn’t paying attention and each time, a large part of me was sad they stopped or that I was paying attention. It’s sad to admit, but it’s also honest, and human. I despise my life and almost everything in it. I find it pointless to pretend that it’s okay. I am 1000% NOT okay. I cannot remember a time when I was okay. Passable? Yes. But okay? No. Hell, I don’t even know what okay looks like or feels like. When people ask how I’m doing, I don’t lie and say I’m okay when I’m not. You know how cashiers and customer service reps often ask how you’re doing? My new response is “I’m too honest for that question.” I don’t play the game and say “I’m good.” or “I’m okay.” because lying is not my first instinct, and when people lie to my face, I look them in the eye and say “Do you want to try that again?”

As I constantly have to explain to other people, my ties in life are different from theirs. My Grandparents are gone. My parents are gone. I have a handful of cousins I am close to, and in truth, I don’t feel like I can discuss my life with them because they’re so wrapped up in their own lives (quite frankly, it’s ALL I hear about. Sometimes they talk at me, and don’t even ask how I’m doing. This can go on for months at a time.). I recently lost my Great-Aunt, who was the last tie I had to my father’s side of the family in this country, aside from my cousins (her grandchildren) who I am currently trying to tune-out because they’re stressing me out with every phone call or text message. I haven’t heard from my brother in months and constantly live in fear that I will get a phone call from a hospital, the police, or the country coroner’s office. I come out of my skin every single time my phone rings and I don’t know who the caller is. Every day of my life, I question my existence. Between migraines, the physical pain, and the emotional pain, there doesn’t seem to be much of a point in sticking around. Why would any sane person allow themselves to go through this kind of torture day in and day out?! Suffering to this extent is inhuman. I wouldn’t allow Cat or Kitten to suffer like this, so why am I allowing myself to live in such a manner?

I used to stop myself from acting on these thoughts because I was afraid my brother would be the one who found me, and I couldn’t do that to him. His best friend committed suicide in 2005 and it left him devastated. I didn’t want him to find his sister dead; I was certain it would break him. Especially after we lost our parents. My brother isn’t me; he’s not the strong sibling, nor will he ever be. One of my best friends lost her brother to suicide, something none of us could ever have anticipated, and she has told me that no matter what I am going through, it’s a permanent solution to problems that are “temporary”. However, you can’t say that to someone who has spent the majority of their life in agony and who rarely, if ever, knows happiness.

Nothing I’m going through is temporary. It is all quite permanent and very real. I don’t think my other friends are aware how much I’m hurting, nor has anyone ever inquired. I’ve only recently realized how one-sided our conversations are. I support and strengthen them, but who supports and strengthens me? My relationships and friendships are solid, but I will always be the black sheep. I’m needed when I’m needed, but where do I go when I’m in need? To a doctor and/or a licensed therapist, and right now, I’m not okay to sit with a therapist weekly, or even bi-weekly. I am gutted, and I don’t have the emotional capacity to sit and discuss anything when I feel like an empty shell. I don’t like wasting someone else’s time, nor my own. My last two therapists dropped out of my life during really awful periods when I most needed support. The last one disappeared completely during one of the worst times in my life. I genuinely trusted her. I’m not ready to be hurt like that again, nor will I allow it. She was the only therapist I’d ever liked, and her not so much as returning a call or referring me to someone else was incredibly unprofessional and rude. It’s something I’ll never forget or forgive. There is always a professional way to do something. It’s one of the first things I learned in business, and I was eight years old at the time! I cannot forgive stupidity when I know that the other person knows better.

So my appointment went well, and I’m glad for that. I genuinely DO like this doctor. I wasn’t kidding about following him to China. That’s one of the highest compliments I can pay him. I’m certain he knows it was genuine. He will be lucky if I don’t super glue myself to his leg at my last appointment, and for some reason the image of that in my head is hysterical beyond words. Oh, Lord, RELAX! I’m joking. Sort of.

He’ll be getting one hell of an online review when I get a moment to collect my thoughts. Not because I have to write one, but because he deserves it. I’ve never written a review for a doctor before. I’ve recommended my former neurologist to people in need (He is genuinely a kind, caring doctor who did his best for me.), but this is different. I want him to have an amazing review moving forward on every website I can slap one on, and I’m just insane (and sane) enough to get one posted everywhere known to man. I don’t actually know anyone who could write something better, and that isn’t ego talking, it’s mere fact.

For obvious reasons, I have protected his name this entire time. As I’ve said before, many times, “privacy is not a setting”. I adhere to laws and boundaries, even if some of them are personally defined. After all, this is still the Internet and while I do talk about a lot of things openly and honestly, I’m also an incredibly private person.

Even when he stops being my physician, I’m still going to feel protective of him; I discovered this accidentally. A family member made some outrageously derogatory remarks to me about him while I was in the process of writing this, and I’d never felt more defensive and protective of a doctor in my entire life. You would have thought she’d taken a shot at my mother, which is one thing that, to this day, is very likely to get you punched in the fucking face. Thus far, no one has deigned to do it to my face. One person made the mistake of doing it via e-mail, and I decided it was an act of pure cowardice not worthy of a response. People know that if they did it to my face, I’d kill them and tell God it was an accident.

My reaction to this family members’ truly insane comments regarding my doctor were to take a deep breath and pause before saying “Did she actually just say that to me and think I’d accept it?” However, she had, and my exact words were “I’m a very good judge of character and unlike you, I trust my judgment and intuition. Number two, this is someone you have never met, spoken to, or spent five minutes in a room with.” I was SO angry, she’s damn lucky she was in another state, or there’s simply no telling the level of fight it would have escalated to.

The following day, she casually contacted me like nothing was wrong, and I informed her that it was incredibly disrespectful and inappropriate for her to take a shot at my doctor and attack a stranger based on her personal experience of working in a hospital. You can’t go around assuming that every doctor is egotistical and arrogant. Far more was said than just that, and I refuse to give the insanity credence by repeating it. However, nothing I said was negative or led her into this series of hateful, rude, callous, inappropriate, man-hating remarks. She knows less than nothing, so it came completely out of left field and I was NOT having it. She did end up apologizing to me for her outburst, calling it an “occupational hazard” from watching the behavior of the doctors who work at her hospital, but that’s a blanket, bullshit excuse and she knows it’s completely unacceptable to me. I’d love to chalk it up to her usual idiocy, but much like attacking my work, which I’d never allow anyone to do, you do NOT attack this doctor. I may have been mad at him for an isolated incident which she doesn’t know about, but I did not disclose anything more than facts when I wrote about it, and she doesn’t read anything I write. This is someone I respect. That means he’s done something to earn it.

When you find a good doctor, however brief the encounter may be, it’s important to let them know which qualities they possess that they need to hold on to in order to survive as medical professionals. They might lose sight of that from time to time, so a solid reminder will remain in the back of their minds. Like anything else in life, there are always things that bring us back to the here and now and remind us of who we are during challenging times. No matter who we are or what we do for a living; we all have those moments. No one is perfect.

It’s a sad jungle out there. Finding someone amazing who cares and genuinely wants to help people, and isn’t egotistical, is very similar to finding a unicorn. Apparently, they DO exist in the medical community if you search hard enough. There’s an immense difference between having a healthy ego and having a Donald Trump complex.

In one of the most screwed up healthcare systems in the world, anyone that becomes a medical doctor in the United States has just completed four years of medical school and, depending on their chosen field, there is a 3-7 year residency or fellowship process after graduation. It puts the average physician over $175,000 in debt, if not more. Yes, they are choosing to become doctors, and no, most of them don’t go around earning our respect as patients for many reasons. One of which is insurance companies dictating far more than they should be allowed to. This has been going on for years, though. It is NOT all related to the ACA. However, there are still so many good doctors out there. Bedside manner isn’t a given. It is often learned, and so much more is learned by taking time out for your patients. In their efforts to help people, they can become doctors that focus solely on research or they can practice medicine based on their field choice in the state(s) in which they are licensed.

What makes this doctor stand out from all the rest? He’s fully engaged. He’s not distracted, dismissive, or daydreaming while you’re talking. He is 100% in the room. He’s not only listening, he hears you. Given the chance; he never would have given up on me. He’s simply too determined. You can fix broken bones, and I am using that as an emotional metaphor. Emotional bruises heal, eventually. But a doctor not giving a damn whether you make it or not? That stays with you forever. I know, because I’ve lived through a plethora of doctors who didn’t give a rat’s ass about anything, least of all me. I was never a person or a patient. They couldn’t be so bothered to return a phone call, or do anything other than rush me in and out of their office. They had no intention of ever helping or making a difference, but if you’re not an experienced patient, you don’t know the signs of what separates a doctor from being a licensed physician to someone who has greatness in them. I’m well-versed, so I do know the difference.

I lucked out. I found the needle in the haystack on my first try here in Massachusetts, but he is leaving, and I’m all out of super glue. I am glad our paths crossed. I think I’m a better person for it. Broken, pretty mess and all.

Yes, he knows I’m a writer and that I wrote the angry piece. I was incredibly honest with him. I will not be so forthcoming with the next doctor, or any others, up the road. Trust is something you earn, and I cannot give of myself again. He is getting a copy of the first piece, and this one, at my last appointment. He’ll probably never know how much his ability to care and treat me like a human-being undid damage every other doctor did along the way. All I can offer is my respect, appreciation, and heartfelt thanks.

Aut viam inveniam aut faciam-“I shall either find a way or make one.”

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

Doubting Myself

All writers have moments when they feel unprepared. Me? On occasion I will say “I wish I were talented.” or “I can’t write this.” In other words, even the best of us have bad days. Or weeks. We all have a little doubt, or we’d be completely full of crap.

I hold it in really well, but I have a lot of doubt when it comes to material I haven’t been writing since day one.

When I first began writing, I did toy around with some fiction. I spent about four or five years writing it for FUN, and when I moved from one state to another, I trashed every single printed page and everything I’d saved it to. Why? Because I took a look at it, saw my growth, and realized that even though it had been fun, it was infantile compared to what I truly wanted to be writing. I didn’t ever want to come across it again because it was nonsense. I decided then that it was okay to read fiction, but it wasn’t in my best interests to be writing it. I did not personally excel in made-up worlds.

Fast-forward and I’ve since created a Dark Urban Fantasy series, which I will be refocusing on at some point in the future (Meaning not today, but soon.), and I am currently working on something I’m not completely comfortable with. However, it is allowing me to explore my emotional depth, and maybe that’s the entire point. Maybe that’s why this story haunted me for months. Maybe it is a reminder that I’m human, and that not every part of me has to be put into storage under lock and key. There are certain lines in the book that are straight out of my own life.

More than once I’ve caught myself saying “Do I have to publish it under my name?” Yes. Yes, I do. I cannot worry about the thoughts of others. I can only tell the story, and move forward. There will be good reviews, bad reviews, and middle of the road reviews. I’m used to that, because not everyone likes my writing style and plenty of people like me even less. Regardless of what people think or say, I still have to tell the story.

For the last few days, I took it upon myself to do some research. I read a lot to see if anyone had anything similar out there, as a precautionary measure. Even if I didn’t know about it, someone could still accuse me of a form of plagiarism. My determination after a few books is that after a certain point, a lot of stories start to blend into one another. Everyone tells their stories a little differently. Some are good, some aren’t, but ultimately I need to stop worrying. Comparing and contrasting isn’t my job. Writing IS.

And so I sit here today, as per usual, with a lower back and left shoulder that are in desperate need of medical treatment. Just walking yesterday killed me, and by walking I mean 3 ½ miles worth. I have no idea how I’m functioning today.

No, I’m not being stubborn. The insurance I had doesn’t cover the doctor I want to see, who is local, so I switched temporarily, just to be able to get in with ONE doctor until I can find someone to see me on the other plan. They told me it wouldn’t go into effect until May 1st, but that I am still covered regardless and not to worry. However, when I went to pick up my medication yesterday, I was already covered by the new plan. I stared at the pharmacy tech and she said “They’re SUCH liars. You can speak to five different people in a day and they’ll all tell you a different story. This happens every day, all day long with these people.” It isn’t the first time I’ve thought that in regard to this company, she just got it out of her mouth before I said something equally as honest.

Technically, I should be at Urgent Care instead of sitting here writing. Alas, this might be another one of those weeks where I don’t get to prioritize my health because of outside circumstances beyond my control. The doctor can’t see me until the end of the month/early May, so Urgent Care seemed like a step in the right direction. Unfortunately, they have bankers hours and I don’t want to show up only to be told they don’t take my insurance. I’d probably lose it on someone. As it is, I have until June 29th to change my insurance AGAIN and then start over with a whole new set of doctors that will be G-d only knows where! What’s the point of having health insurance when no one is accepting new patients OR they’re so far away, it’s utterly pointless?! It’s extremely frustrating to me.

And so, I write. I write through the pain, I try to write it out of my system emotionally, and I desperately try not to sit here in tears when the pain is too much (which is 99% of the time).

There are days I’d like my original life back. One where very few doubts entered my mind, and where being able to walk, sit, stand, think, etc., were not issues because my life wasn’t chock full of agonizing pain.

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

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Page After Page

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In less than a month, I’ve written over 220,000 words. Does that sound like a lot? It is. To do it in such a short period of time is a testament to me pushing myself to write every single day, and not to give up when I’ve felt stuck. Even if I only managed one page on a bad day, I still parked my ass in front of the file and went over it, and over it, and over it. It’s called determination, with a healthy dose of bat-shit crazy thrown into the mix.

I’ve written, rewritten, proofed, edited, done additional rewrites, changed the direction up, added new characters, strengthened characters I liked, and here I am, still trying to figure out the true direction of the story. For the first time, I wrote something 100% unplanned. I let it haunt me for three months before I said “Let’s give it a try and see how it goes.” It’s become so much bigger than what I first thought, and I’ve found most of it incredibly easy to write.

The challenge in the work is getting in touch with things I’ve personally found difficult in my life. It’s been therapeutic to work it out on the screen in front of me and allow myself to be authentic within the confines of a fictional novel. Instead of saying “That’s decent, it’ll do.” (something I never say, I’m a perfectionist when it comes to my writing), I’m finding myself excited to get up each day and return to work.

During a radio interview Nora Roberts explained how she began writing under the pseudonym J.D. Robb. Her publisher had, and I’m paraphrasing here, told her to “get a hobby” because her books were selling so well. Instead of deciding to actually take that advice and learn something new or do something fun, she decided to channel it into writing something else. I remember hearing the interview and laughing, until I realized today that I’ve sort of done the same thing. Instead of staying in my comfortable world where I’m 100% writing the truth, I’ve opened a door into a new genre for myself, and have found it’s equally as comfortable, if not more so. If you had suggested this to me ten or even five years ago, I would have laughed in your face. Instead, I’m breaking personal records on what I can achieve. I feel proud of that.

I hate reading things that make me roll my eyes. I hate reading things that don’t feel realistic, to some degree. I also hate feeling like I’m writing the same shit a thousand other people are writing. It gets boring very quickly.

I hate timid characters. They annoy me. I hate the damsel-in-distress nonsense. This is the 21st century, and I don’t know a lot of weak women. Unless you’re writing a period piece set in a different century, lose the giggly, shy female that you’d either slap or kick if you were to meet her tomorrow. Let someone in junior high write that crap.

Some of what I’m writing touches on gender roles. What makes a woman truly strong? What makes a man the right person? What makes a couple work well together? How do you stay strong through difficulties, your own idiocy, lapses in judgment, etc. I prefer to focus on the humanity. What are our characters if not perfectly flawed human-beings?

I have come to realize that most of my female characters (some, not all) are a version of me. If Erika Girardi can be Erika Jayne, then I can channel aspects of who I am into characters, too. There’s nothing wrong with that. I find it incredibly empowering.

When writing male characters, I work hard at channeling the men I know. There is no such thing as the perfect person, but there is such a thing as “the right person for you”, regardless of gender. Several of my friends described me as their soul-mate, from a friendship perspective. I firmly believe we have multiple soul-mates in life that we meet at different times. Some are with us forever and others come and go, leaving their mark. That’s real life. I’m virtually incapable of writing something and not bringing real life to it.

So as I sit here this afternoon, struggling with a scene I feel is emotionally crucial to the story, I have to remind myself to just be real. Take a deep breath and push through. And when I feel like I can’t focus, then it’s time for a break, but I have to get it done. I have to finish it. Maybe not today, but as soon as I can.

Let’s face it; no one would believe I wrote it if it were emotionally false.

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

Sick Writer

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I find myself unable to concentrate this afternoon as I work on what I can only hope is my second to last draft. Everything is coming together nicely, but my health is taking an unhappy turn.

It only took six and a half months, two applications (the first of which they lost and didn’t tell me about until January!), and a plethora of phone calls to find out that my health insurance has finally been approved! The utterly daunting task of finding a primary care physician, a neurologist, and someone who can actually diagnose and treat whatever the hell I have is overwhelming.

Over the past few years I’ve come to wonder if I was properly diagnosed with Fibromyalgia. Sure, I match all the criteria, but is that what this truly is? There are so many other pain-related autoimmune disorders, and disorders that are pain-related and neurological. I wasn’t tested for the majority of them and it’s been a while since I was retested for Lyme Disease. In turn, I’ve decided to meet a new doctor and simply give him/her a list of my symptoms. I’d need to have blood work and tests done any way, so I’d rather start fresh and not even bring the word Fibromyalgia up to a new physician. I want someone to come back to me with a clear-cut diagnosis and a treatment plan. I don’t want to be jerked around. Nor do I want to be judged or treated like a drug addict for saying it. I haven’t been on prescription pain medication in five years. If I’d been addicted, it would have posed a serious problem. Instead, it was just an asshole doctor playing with my life. A doctor who lied to my face when I asked about his residency at a local hospital (it’s how I was referred to him, by a nurse that had worked with him). He’s the only doctor in the United States with that precise first, middle, and last name, so why lie about where you did your residency? It’s common knowledge with a little research. That wasn’t the only indication that something about him was off. Being dropped as a patient without warning was the icing on the cake after his in-office behavior.

My migraines have progressively gotten worse. I am currently on day ten of a migraine that has destroyed me. Each day I’m a little more hesitant to eat or drink, because anything can trigger my headaches now, and I simply don’t see any correlation between food, drink, and when I’ll get slammed with a headache. I can be okay for an hour or two, and the second I sit down to put the information into the migraine app, I get slammed with horrific head pain, nausea, etc. These are clear signs that I’m NOT okay and that I need to make sure a brain MRI is done soon. The last one I had was of my brain and spine. The brain scan is usually 35 minutes with and without contrast, but the spine takes longer and the position is extremely uncomfortable when you suffer from serious lower back pain. I ended up having a claustrophobic panic attack inside the machine. That had never happened to me before, so this time, I am going to make sure I’m armed with Valium, Xanax, or whatever a doctor can give me so I don’t have a meltdown in the middle of the test. I’m not usually claustrophobic at all, but I now know that MRI machines and snow storms cause me to go into pre-panic meltdowns at the mere thought. It’s the exact opposite of who I am, so it’s hard to explain why this is suddenly happening to me. I hope that whatever this is, it doesn’t not require surgery. I did some research and didn’t like what I found. 😦 This is precisely why I hate when people say “You could have this…” and I end up Googling it to educate myself on something I’ve never heard of before, only to convince myself of the “What Ifs”. A case of the “What Ifs” will only increase ones’ stress levels and anxiety, so why do people say shit like that”?! It’s one thing if I’m with someone and they’re displaying signs of a heart attack or stroke, in which case I am getting them an aspirin (for the former) and calling 911, regardless of which situation it may be. I don’t have to be anything more than concerned, and get them medical attention as quickly as possible.

The nicest thing a person can say when I’m suffering is “I’m concerned. Make an appointment and I will go with you.” If you’re going to say one thing and not mean it, then I’ll go whenever the fuck I go, but it won’t be on your terms.

I sit here this afternoon, really praying I don’t end up in the emergency room or at Urgent Care over a migraine. I’ll pretend that the stomach pain I’ve had on and off since Sunday is an abdominal migraine. I’ve never been diagnosed with them, but the symptoms come with a lot of my migraines these days, depending on the severity. You don’t have to be a rocket scientist to put two and two together. In fairness, what will either place really do for me? Not a whole lot. I’d be lucky to leave with an abortive, like Relpax, and a referral to a neurologist. That doesn’t help me, but would they do blood work on site? Yes.

I’ve already had to cancel my appointment with a Physician’s Assistant due to transportation issues. I don’t feel good about that, but it’s a huge scheduling conflict. Not every appointment in my life can be at the crack of dawn, especially when I am having severe issues falling asleep and staying that way. An early morning appointment means no sleep for me until I return home, and that’s if I can sleep at all. It then screws up my schedule until a week’s worth of Melatonin can correct the problem. So unless I’m sleeping well, I don’t commit to appointments that early because I cannot guarantee I’ll be able to make them. If I’m awake at six in the morning, chances are I’m in pain or didn’t get an ounce of sleep. I’ve got allergy medicine knocking me out most nights, and kind that is marked “non-drowsy”, so I’m not being stubborn, but I am owning my limitations.

Normal walked out the door a long time ago. I can’t expect anything to give me my life back. All I can do is muddle through the pain and pray that someone will eventually hand me the correct diagnosis.

Wishing everyone who celebrate a Happy Saint Patrick’s Day! Have a good weekend, one and all.

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

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Checking In

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Hello everyone! I hope this finds everyone in a good place, or at least, not a painful one. Life happens and I know it’s not all roses, sunshine, and ice cream. 😦

I didn’t mean to drop off the planet for a bit, and in truth, it hasn’t been that long. Even still, it’s unacceptable to keep everyone out of the loop.

About two and a half weeks ago I began writing a piece of fiction that has been haunting me for several months. I began my third draft this morning of an 80,000 word novel. It’s a genre I was unaware I could write, but I am thoroughly enjoying my time spent (About 8-14 hours a day) with these characters. And even though the characters keep changing their strengths and personalities on me, each trying to be in the lead for who is stronger, I am finding myself doing all that I can to keep their best assets in tact, and complete this for submission to an agent. I wouldn’t need representation if this wasn’t a “hobby genre”. It’s the polar opposite of anything else I’ve ever written. It will appeal to people who read the genre, but not so much to the average reader, and that’s okay. None of you will be obligated to grab a copy, unless I self-publish, in which case, there will be freebies available (for judgment). And even then, more than half of you won’t like it. Hell, I myself am learning to be comfortable with this new side of myself. She’s always existed, but suddenly she was handed the keys to go for it, so why the hell not make an effort?

Aside from that dose of positive news, I’ve been plagued by migraines, fell down the back stairs last week while taking out the recycling (I thought I’d come away with a few bruises and some soreness, but apparently I banged myself a lot harder than I originally thought.), and just plain haven’t felt like myself.

I am spending the majority of my time writing and rewriting. I can’t complain there. When I declared the first draft to be “missing something”, I banged out a 20,000 word change that shifted the entire story in a few direction. So what is my problem? Finding the right way to stop the story. Doing a “one and done” novel has never been something I’d anticipated attempting. I like writing series work. It allows for expansion and growth, and takes the reader on a journey. A book should be more than words on a page; it should mean something. Regardless of genre, you should come away educated, enlightened, happy, sad, or a plethora of other things, but you should still gain something from your time spent reading an author’s work. Even if you hate it. However, agree, here and now, not to tell me you hated something I wrote. Respectfully decline to comment on it, don’t read it a second time, but agree not to tell me you hated it. 😉 I’ll have plenty of detractors, and I do, but it’s so much easier to say “Congrats on your achievement.” than “I hated it!” While not the most diplomatic person on the planet, I’ve never told a single friend of mine that writes that I hated their work. I’d rather say something isn’t my taste, and not be disrespectful to what I know is not easy work to start and complete.

The days and weeks have flown by since I started writing this new body of work. The fact that I allowed it to simmer inside my head for so long is the culprit behind being able to get so much down so quickly. That, and the fact that I type over 100 words per minute.

If all else fails, at least I know I tried something new.

Wishing you all a wonderful end to this day. I will be back as soon as possible. Currently immersed in a month in this year we have yet to take on. 🙂

Be happy, healthy, and safe everyone.

Until next time,

L

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