Empty As A Shell

I have both nothing to say, and a lot to say, so I’ve chosen to remain silent for the past few weeks. You can never get into trouble by keeping your mouth shut.

I sit here tonight, coughing my brains out, questioning how I somehow got sick in twenty-four hours when I’ve obsessively taken precautions against illness. I’m loaded up on Benadryl, in case it’s “just my allergies”, which I love hearing every time I see a doctor and ask if I have an ear or sinus infection (except for earlier this year when I, indeed, had both). I’m trying to soothe the sore throat that I swear, I did not have a few hours ago. I swear by Ricola herb cough drops.

If you’ve been reading my work for a year or two, you know I hate getting sick. I especially hate knowing it will happen right before my special day; the one day I don’t have to share with anyone else, unless I want to. Every damn year, like clockwork. It doesn’t exactly excite me. 😦

After last year’s debacle, I don’t want to do a whole lot this year, and frankly, no one is willing to tag along. Yes, I still want to feel special, I still want to enjoy something, but I don’t want anyone making a ridiculous or offensive comment about what I enjoy, or saying something hurtful because they think they’re owed something. That attitude and behavior doesn’t fly well with me.

Someone messaged me earlier to ask if I want anything special for my birthday. I was polite, mainly because this person accused me of something I find heinous over the summer, and then I talked with my brother about it. He gives the best advice. A lot of people would be dead if it weren’t for my brother talking me down at the height of my anger. I love how he said “Don’t hold it against her for the rest of her life (Apparently he has forgotten how legendary the “female grudge” can be in my family.). Just take note that she rolls like that and remember.”

As much as I try to accept everyone as they are, I struggle with people who say shitty things and think it’s no big deal. I hate having to rein in my temper when I genuinely want to haul off on someone. It’s a boundary thing, really. Also, a person clearly doesn’t know me very well if they are asking me, on the night before my birthday, if there’s something special I’d like. Yeah, my sanity, but bourbon will do (I’m being a smart ass. My actual response was far more polite than I would like to be.).

I want things that help me create. It could be a set of artist’s markers and some very cool coloring books, or it could be a new eye shadow palette and some brushes. It could be paint and things to be painted, etc. Writing isn’t my only creative outlet. I appreciate when people honor that, as opposed to criticizing it. If someone is talented and I know they need things to occupy their mind during sleepless nights or bad days, then I am absolutely going to do something to encourage their creativity.

For a while now, I’ve been painting shells for the garden. Not because I have to, but because for 20-30 minutes here and there, it gives me something creative to focus on. It takes me away from my writing and gives me a different type of canvas to work with.

Shells with texture absorb a lot of paint to truly be “painted”, but it’s worth it when you see your crazy designs in the end. Every single design has been mostly intentional. I have about eight to finish, and even though they’ll likely come inside for winter, they are glazed to withstand the elements. After all, most of these shells once housed ocean creatures, and they survived the rough waters. Rain and snow are nothing compared to the deep, blue sea.

So as I sit here on the eve of my birthday, I encourage you to create. But most importantly, I encourage you to get out of your comfort zone and try something new. It’s worth it.

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

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Things I’m Thinking About

Every once in a while, I believe we all slip into a “funk” or a mood we simply can’t shake. It then translates into lack of interest in things we’d normally be incredibly involved in. I know where my mood stems from, and why, but nevertheless, it is causing more harm than good. What else is new, right?

I was feeling pretty awful earlier this week after spending several days pretty much bed-ridden in pain. I made mention of this and several friends and family members told me I was “one of the strongest people they know”.  As per usual, someone tried to take that away from me by insinuating I am “not that strong” or maybe “not strong at all”. Before speaking, I suggest you live in my shoes for six months, experience my pain and suffering, and THEN you might be allowed to imply this or that, but ultimately, take into consideration the very real possibility that you don’t know me as well as others do. Or maybe you choose to see what they do not. Regardless, kicking a person while they’re down is pretty damn low, not to mention, greatly unappreciated. And yet, I wasn’t entirely shocked, just ticked off.

When someone sees you suffering and takes shots at you for no reason; it’s not about you.

There are days I push so hard to survive from one minute to the next, and there are days that take me out completely. It doesn’t mean I don’t want to do something, it means I’m listening to my body. When your body says “I can’t do this today. I need care.”, you have to listen. Just because you pushed your body the day before does not mean it will be kind to you today. Between being physically burnt out, enduring high levels of pain, and disrupted sleep patterns, I feel confident when I listen to my body. There are days I force myself to be “normal” and get things done, and there are days when my body just plain shuts down. It doesn’t mean one thing was more important than the other, but it does mean I have limitations.

In a few days, it will be my third month on muscle relaxers. They helped considerably when I badly hurt my lower back and it was one spasm after another, requiring me to take muscle relaxers, an anti-inflammatory, and spend hours with a heating pad directly where the issues were. Beyond that, they’re doing NOTHING for my neck, unless I’ve been writing all day and my neck feels tight from how I look at the screen for hours on end. I rarely look at the keyboard, which is an interesting little fact I only recently noticed about myself.

I’m writing, trying to complete the final draft of my manuscript. It was going very well, until I decided I needed to re-work the entire first portion of the book. Yes, I’m a perfectionist and a pain in the ass, but I’d rather write something amazing as opposed to something half-assed that seems familiar. Overall, anything one can think of under the sun has already been thought of already (A fancy way of saying “It’s all been done before.”), but can one put a new spin on it? Yes. And so, I have spent hours trying to figure out how to give it an alternative beginning. This involved a prologue I’m really proud of, and as I do my umpteenth read-through, it will involve some major changes throughout the storyline. I’m not pressuring myself about any of this work, but goal-wise, I am going to try writing as much as humanly possible during NaNoWriMo, next month. I’m averaging several thousand words on my good days, so why not take the new word count and see where it leads me? It doesn’t hurt to try. Again, I’m not going to pressure myself, but I AM going to work hard and write to the best of my ability.

If you did/do your best with the written word you put your name on, then you will have achieved much.

I hope everyone enjoys the rest of their week!

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

Follow Your Gut, Because It Doesn’t Lie…

A few weeks ago someone friended me on Facebook. Under normal circumstances I only accept requests from people I know in real life or people I have met via a migraine or Fibromyalgia/ Chronic Pain group. I’ve met some great people who have become good friends almost immediately. Sometimes you click with someone and you’re good, despite not seeing them every single day of your life. But every once in a while, someone comes along and their intentions are less than honorable.

Here’s precisely what went down with this particular person.

#1: He friended me and I was busy, so I accepted it thinking he was from my migraine group. When I went to do a little recon, I found that his profile had exactly three photos, and he’d joined in February of 2017. He had the prerequisite photo of “himself” in the desert holding a gun. He claimed he worked “at U.S. Army”. Red flag. Why? He didn’t have a single friend or family member listed. That’s odd, especially when a person is friending you out of the blue.

#2: He immediately messages me. And by immediately, I mean I don’t think it took him thirty seconds. Everything about the interaction screamed “This is not the person in the photos.”, and because I trust my intuition, I reported him to Facebook. HUGE red flag.

#3: Facebook, as usual, did nothing. The profile was deleted for less than a few hours and then he was suddenly back on my friends list. I decided to let it go, as long as the messages stopped.

#4: When he messaged me after midnight and his English is about as American as my knowledge of Indo-Iranian languages, I called him on his shit.

#5: Instead of being honest, especially after I said “Your profile states that you’re U.S. Military, but your command of the English language shows otherwise.”, he tried to maintain the charade. “Sorry! I didn’t understand you better.” Americans don’t talk like that. We know proper tense.

#6: “Okay, but you hardly ever talk to me dear.” How many guys do you know who talk like that? I responded by saying “You are an absolute stranger and I’m not dumb.” He stated “What does that mean?” Even the dimmest person would realize I’m on to them and back off. Someone smarter would have immediately unfriended me. He didn’t. I was very direct with my response. I flat-out said he was not who he was professing to be and he replied “Are you kidding me? I am who I am and no one else is me.” He said a few other things and again, the English was SO off. Instead of continuing the nonsensical back and forth (which I do not have time for), I unfriended him, reported him again, and blocked him.

If someone friends you, do a little background on them if you don’t know them from work, every day life, etc. I attract different types of people because I’m a writer and I’m affiliated with some pain groups, one of which I founded and maintain, as well as some groups for specific interests, etc. But I’m NOT fucking stupid. I speak more than one language fluently and I know how Americans sound, even via text message or Facebook Messenger. There is a distinction to American English that does not translate into or out of other languages. Two of my best friends are German and Israeli, by birth. Each speaks English as a second language. I’ve been friends with both of them for over twenty years. On occasion, one or both of them will say something and they’ll state “This may not translate into English well, but…” They are honest and they own the fact that certain things get lost in translation. I have other friends who are polyglots and they, like me, will be the first to say that a lot of things can get lost in translation when English is your first language.

There are all kinds of people out there, but you are my readers and I want each and every one of you to be safe on the Internet. Don’t take anyone at face value until they prove themselves to you, just like you would expect in real life.

I know a lot of people are lonely and they look for people to chat with in chat rooms and assorted forums. IRC is one of the larger forums I know of because my brother has used it since he was a kid, making good friends along the way, but also losing friends because of it in terribly tragic ways. 😦

Be careful who you “friend” and be careful who you talk to. Not everyone is authentic. Don’t be so quick to trust. Trust your intuition and don’t be so willing to give out personal info.

Always, ALWAYS, trust your gut, and even more so if you see a red flag go up. Your gut instinct is the one part of you that will never lie.

There are real people in this world, but there are also fake people and fake profiles. Unfortunately, that is the land of social media.

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

Because He’s My Brother

The past two years have been incredibly hard on my brother. I have no words for what he has been through, or for the things he continues to battle easy day. For the past ten years or so, all we’ve had that we can truly count on, as siblings, is each other.

I remember the day he was born. The phone rang and I wasn’t pleased hearing I had a little brother. I was determined a sister would be coming home. And by determined, I mean adamant. There was simply no way anyone was going to convince me that a brother was a good thing.

We share the same birthday in neighboring months and our birth times are similar. We were born in the same hospital, but because the maternity ward had been moved and remodeled, our birth certificates state we were born in different zip codes.

I remember the day he came home from the hospital. He looked up at me from my mother’s arms and I was suddenly the most important person in his world. He knew exactly who to trust.

He would scream and cry whenever I was out of his visual field. I’d come running into the room and as soon as he saw me, he’d stop crying. He’d go from red-faced hysteria to laughter and giggles, because I always made him smile.

Up until a month ago, I hadn’t heard from my brother in four months. Every single day, I was convinced something horrible had happened and that I would soon get a call from a police officer or a coroner’s office. I was mentally prepared for the worst. What I got was an unfortunate shock I wouldn’t wish on anyone. But ultimately, the shock led to my brother being okay, and that is a relief.

A lot of people do not share close relationships with their siblings, for various reasons, and I understand that. But for me, my brother is the one person who will always have my back. He is someone who knows me really well. He’s one of my best friends.

I haven’t seen my brother in nearly two years, but nothing and no one can break the bond between us. He is the one living person who knows how to take the things I say. He knows when I’m truly being sarcastic, or when I’m simply making a statement. Even via text, my humor and delivery are not lost on him. He makes no assumptions with me because he actually knows me.

Together, and individually, we’ve been through a lot. It’s mind-numbing and disturbing to think about, but it’s life. Each of us is on a journey and for a while now, I’ve known that I somehow got dragged into my brother’s journey and life lessons. I wish I knew how to focus solely on myself, but I wasn’t raised to be selfish or to pretend that another person doesn’t matter. There are many people you walk away from, including family members, but I choose not to walk away from my brother because I know his heart. I don’t know one side to base my judgment on; I know the entirety.

I have the “luxury” of focusing solely on my health right now, but I know the odds aren’t in my favor. My brother has managed to survive quadruple bypass surgery, two operations due to staph infections, and several other procedures, all in less than two years. He has another treatment in a few months, and it scares me because I don’t trust it. I have a right to be concerned because as he pointed out “You’re the only one who truly cares.” He’s right, and knowing that angers the hell out of me.

Every family is different and each family’s dynamics are also going to be different. However, I was clearly raised right. I can go from zero to psycho in less than three seconds, but when it comes to most people, they simply aren’t worth it. My brother may not be of value to other “family members”, most of whom should be lined up and shot, but he’s of value to me because he’s MY brother. You don’t mess with what’s MINE, and that includes people. It may seem arrogant, but once you’re a part of my life and heart, I won’t allow you to be hurt by others.

I am proud of how far he has come, and I won’t allow anyone else to take the credit for it. He still has battles and challenges, and I will forever be a dragon slayer for him, if need be.

So today, on his birthday, I say “Welcome to the rest of your life. Don’t fuck it up.”

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

 

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.

Official?

I finally have documentation on my medical chart that I have Fibromyalgia. What I find odd is that the doctor didn’t check for trigger points or question the discussion, she simply added it to my “history”. If the original doctor who diagnosed me in 2003/2004 had remembered to put it in my chart back then, I’d be dealing with a lot less stress now, but he didn’t. He also said he “did not remember ever having such a conversation”. Of course you don’t; you don’t have my memory and you aren’t the fucking patient! I think we can all safely agree that when a doctor doesn’t do their due diligence, it’s upsetting. From here on in, the words “Please put that in my chart.” are going to be ingrained into my speech at every appointment. All it takes is one idiot, and that’s unacceptable in my eyes.

If he had never said “I firmly believe you have Fibromyalgia.”, after running the gamut of testing and everything came up negative, I might have had to learn about it the way so many other people do; on the Internet. Instead, I walked away relieved, thinking “Thank God I don’t have lupus.” He didn’t explain Fibromyalgia or discuss the progressive nature of it, or I wouldn’t have been so fixated on testing negative for lupus. I had no idea how stupid my thought process was that day. Because in reality, I’d maybe heard of Fibromyalgia in passing, but I had definitely heard first-hand horrors about lupus. In the years that have since passed, we are much more aware of the horrors of Fibromyalgia and precisely how progressive it is, and widespread, as a community of chronic pain sufferers.

I feel a little better that I have a referral for a new neurologist after explaining how I am being ignored by the current “physician” (The man returned my phone calls ONCE. Since then, crickets.), and I use that term loosely. Initially she refused to refer me to someone else when I called and said the appointment was an absolute bust, but in person, hearing about it, she changed her tune. Of course, she also wasted a month and a half of my time because she should have had my back when I said something wasn’t right with the other doctor. I am being sent for x-rays of my cervical and lower lumbar spine, and the doctor said she’ll discuss direction with me when she receives the results. Now if only I could physically move my body… 😦

I talked about how bad the pain was. I’m not 100% certain she took that seriously. My baseline is an eight, which is honestly more like a fifteen for the average pain patient, but when doctors hear that, they react badly, so I stuck with the eight. Now while I am relieved she prescribed muscle relaxers, I was filling out some paperwork very early this morning and noticed a derogatory remark in her notes. It’s highly inappropriate to say to a person’s face (I would NEVER.), so to see it in black and white made me see RED. It genuinely put me back into the whole “I need a new doctor.” position, and I am still on a waiting list to be seen by a different physician in a few months. I firmly feel this is the best course of action. If I don’t like the new doctor, I can always go back to this one, but I feel like it’s important to get a second opinion and, quite possibly, a different perspective. You can only “Uh huh.” me so many times and look at the computer instead of me before I inevitably lose my patience.

Why does a derogatory remark bother me? Because if this was deemed an issue she felt she could put into my notes, but not say to my face as any type of concern, then that is a serious communication issue for me. Moreover, by not talking about it with me, she made an enormous assumption which I know for a fact isn’t true. Please, do not make assumptions about people based on looks, height, weight, skin color, ethnicity, level of education, etc. In other words, DON’T MAKE ASSUMPTIONS AT ALL.

I’ve met Ivy League educated people who were dumber than a box of rocks with twelve piles of shit on top (one was a doctor who’d gone to three different Ivy League schools. Not only was he a moron, but he had all the warmth and compassion of a dead roach. He had zero empathy and cared only about the enormous check he got at the end of each session. He did NOT last long in my world.). I’ve met people with GEDs who made me feel inferior on the intelligence scale, and I’m not stupid, so I try not to judge a book by its cover.

When I see the nurse practitioner in a few weeks, I am going to demand that comment be removed from my chart. It was an assumption, but if it’s not fact, don’t put it in my medical records. Period. I’m a patient, and I want to be taken seriously, but when you write things like that, another doctor might see it and make an error in judgment that I simply don’t deem fair.

When women judge other women without any facts, it pisses me off. I have no right to do it, despite the fact that I am human and occasionally make a snap judgment or a snarky comment (privately). However, I do not know another woman’s story, pain, health, or journey, and taking her down to a tiny square of humanity is wrong. If I don’t want it done to me, then I cannot do it to others. There’s a time and place for joking, but NOT at the doctor’s office.

How sad is it that this reaffirmed my desire to only see male physicians? I’d rather deal with someone who’ll speak up and be real, as opposed to someone who smiles in my face and puts a nasty comment in my medical history. Ladies, you’re not doing the world ANY favors by being rude to female patients. Treat people equally and treat them with respect, or don’t treat them at all. Go into another line of work, but don’t be a bitch. The same way I’ll call out a male doctor for a douche bag comment is not dissimilar to how I’ll tell a female doctor she’s off base. For some reason, men always know precisely how to take what I’m saying and women just get offended that I called them out on their bullshit. In this particular appointment, I probably corrected her half a dozen times, maybe more. I wasn’t there to nitpick or play games, I was there for a serious discussion. Zero compassion, zero empathy, and very little eye contact because she was looking at the computer, not at me. Now while she did appear to be listening, I was the last appointment of the day and got more time than originally scheduled for, but it still wasn’t “enough”.

She said she wanted to follow-up with me “in a few weeks”, but they saw she didn’t have an opening for six weeks. There is NO reason why I should have to wait six weeks to be seen after waiting two and a half months to be seen this time around. It’s disrespectful, not to mention ridiculous. It was her decision to pass me off to the nurse practitioner and while I’m not happy about that, I can only say “Lets see how it goes.” I know a few people who prefer their NP over the doctor, but I still reserve the right to meet with a new doctor when an opening comes up and see how it goes. I deserve better care, period. I was assured that once I am “in” with the new doctor, follow-up appointments are not difficult to get and don’t take months. I need to see for myself, even though she’s further away. And I like the fact that she sees ten new patients a week and does her best to get through the waiting list by doing so. That means something to me. So, I’ll see how it goes when the time comes.

Tonight, I am trying to gear myself up for the x-rays tomorrow. I’m grateful that the hospital can take films 24/7, even on weekends. I hope that by mid-day, my body is loose enough muscle-wise that I can get that taken care of and go on with my day. I have so much to squeeze into this weekend and honestly, the thought fucking exhausts me. If I went back to caffeine, I’d be able to do it without issue, but I don’t know if that’s the healthiest choice to make, so I’m going to play it by ear. Overall, all I can truly do is my best. I’m tired of being told, and shown, that my best is never good enough.

Instead of getting to enjoy my weekends, or brief moments, I have to suck it up and force myself to do things I physically cannot do much any more. If only every day people understood this. 😦

For now, the Fibromyalgia is official. But at what cost? Don’t for a single second think I don’t wonder if I was misdiagnosed and I have something else, because I do. The more I learn, the more I question. As should we all.

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.

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