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.

You Only Get One Chance

I showed up for my doctor’s appointment today and the office staff, who I can only describe as idiotically incompetent, something I don’t normally say about this particular office, waited about ten minutes before informing me that my insurance had been terminated. To say I was outraged is a vast understatement.

When they ask you to confirm a week prior to your appointment THEY ARE SUPPOSED TO RUN YOUR INSURANCE. Every office is supposed to do this to avoid people showing up for appointments without coverage. Apparently, they’re too fucking lazy to do their jobs. Instead of doing their due diligence, they get me up early on a Friday morning, I arrive on time, and I get handed a huge pile of horse shit shortly after trying to gear up to be seen. I stepped out to find out what was going on because you don’t have private conversations in a waiting room.

I called my insurance company and they immediately passed the buck, claiming it “wasn’t their fault and they didn’t know anything”, thus leaving me to call the “parent company”. After being on hold for nearly twenty minutes, “the parent” made claims that I was notified of termination in March. I didn’t even have my insurance for a full two months in March, and I’d know if I had received a letter requesting information. I open everything they send me because if they need something, I make sure to handle it right away. I can’t afford to be without coverage. They told me they’re “missing a document”, but the document in question is one I provided them with before I was approved for insurance in the first place. How did it suddenly “go missing”? How is it that they waited until July 29th to cancel me?! They told me they sent me a letter on July 14th to notify me that they needed this document by the 28th. I would know if I’d received such a letter, but I didn’t. I have only received a few pieces of mail in the past few weeks and none of it was from them. The only thing I have received from them recently involved open enrollment for this Fall; which gives me the opportunity to change the secondary company and try something new out for three months, and either keep it after that for a full year or switch back to the current “child company”. Why would you send that to me if you were going to terminate me? It makes no sense.

I called them at the end of June to ask a question and I was assured that I was active with zero issues regarding my insurance. That would have been a good time to say “Hey, did you get the letter we sent you in March?”, or at least one would think so. I’ve spoken with the “child company” a handful of times and not once was this mentioned to me. Instead, the “parent” told me I did not have to do anything until the end of my first insured year when they ask you to verify your address and other information for the umpteenth time, “to keep everything current”. Their words, not mine. I don’t know about you, but I call and change my address with companies if need be, I don’t wait until they ask me to verify.

Being told “Please write a letter verifying your address and fax it to us immediately.” pissed me off because I missed out on two appointments I’ve had planned for the past month as a result of this idiocy. Even better, they told me to call them Monday (I’ve already faxed them the document.) to “make sure they got the fax”. These are the same people who, for months, told me they were handling my application and in the end, I was forced to re-apply because they’d somehow “only gotten one page” of a twenty plus page fax. I find this very hard to believe after being told “You’re in the system, we just haven’t processed you yet.”. I was told it would take 48 hours for the fax to be processed, but up to two weeks for me to be reinstated. I nearly lost it. I have appointments pending this month and I NEED to be seen. I cannot imagine going to the ER, something I had planned on doing due to my pain escalating, and being told I was not covered. I’m so outraged, and yet I am told this “happens all the time”. How is this acceptable? If I don’t receive notification of something, then I cannot provide you with a ridiculous document I’ve already given you.

The doctor’s office tried to get me to sign a waiver to be seen, claiming my insurance would “back date” me. My insurance company said “We don’t do that; don’t sign anything.” The woman in the office was asked twice how much one appointment was without insurance, just to get in and be seen, and she actually said “$800.” Did your jaw just hit the floor? She can’t possibly know what she’s talking about because that is so beyond unrealistic, it’s not even funny. Who the hell made up such nonsense? That she repeated it with a straight face more than once was truly appalling. Why can’t you just say “I honestly don’t know.”? Why lie and claim it’s “high because it’s billed through the hospital”? Trust me, that is NOT what you bill the insurance company and if you do, that is laughable because you’re probably lucky to get $80 from them. I know how this shit works.

The main reason I was there was to meet a new doctor and get medication. After dealing with the insurance and feeling like an absolute moron for not canceling when it’s genuinely what I wanted to do in the first place, the doctor calls me into her office, ostensibly to discuss what she is going to do, etc. It went from “I’ll give you a one month supply of your medicine.” to “I can’t prescribe that.” She was rude, dismissive, judgmental, and then tried to back-track with me and pretend to be nice after she’d already judged me for medication I’ve taken for fourteen years and insulted my intelligence. For the record, I hadn’t said a word to her before she started in on me. When I give you direct eye contact and it’s an icy look, and I’m being deadly silent, I am giving you the opportunity not to dig yourself a deeper hole. She kept digging. I immediately knew she was NOT going to work out. I may have to see her in a month, just to be prescribed the medicine, but I’ve already asked someone else in her office to “find me another doctor”, and I explained why in the shortest way possible.

My former doctor hasn’t actually left, which did not shock me at all. His name kept coming up in conversations to me and I nearly walked into his office and left him a note about the Oxford English dictionary definition of “I’m leaving on July 7th.” (I’m legitimately going to offer to pack his office for him. He is WAY too good for that place.). I haven’t spoken to him in a month, so he’ll know something is wrong if I’m calling. I both want to call and don’t want to, because I’m really unsure what he can do at this point. I am not sure what he was thinking when he recommended her, saying she was “really warm and caring” (I couldn’t warm up to this woman if we were cremated together. I can’t wait to hear his reaction when I tell him that. He knows me well enough to know I am not joking around.), but I hope to G-d he’s got someone else in mind because I will NOT tolerate someone like her ever again. Her behavior is the precise reason I started seeing male doctors almost exclusively. I don’t need bullshit from a doctor simply because she’s female. I’m a woman, too, but I don’t have anything to prove simply because I’m female.

I walked out of her office politely, but being told to “call my primary care physician” for medicine she was too afraid to prescribe pissed me off. It wasn’t merely what she said, it was the way she said it and how disrespectful she was overall. The one thing my PCP did do right is prescribe it without argument. I was shocked. I can make a month’s supply last about six weeks or so, but I shouldn’t have to, and that’s the point. This doctor was beyond rude and then tried to pretend like she was a good person. That sort of behavior doesn’t fly with me. This is a medication easily called into my pharmacy, so it’s not a serious drug (not in my eyes, any way), it’s just not prescribed as regularly as it once was. My former doctor didn’t have enough experience with it to prescribe it or to try tapering me off of it because he wasn’t going to be there much longer, so we simply discussed my taking a lower dose of it whenever possible, and I have done that. I take it as needed, but I don’t take the entire prescribed amount each day.

Walking out angry from a maybe five-minute conversation is not a good first impression to make on ANY patient. Being rude, dismissive, condescending, refusing to listen and actually hear me, and being passive-aggressive are not qualities one wants in a doctor. You only get one chance with me. There is no way I can have a working relationship with someone like that. And sadly, I knew I didn’t like her the second I saw her. My intuition screamed “That’s the new doctor. Get out while you can!” You aren’t going to get anywhere with me using the “bitch card”. If that’s how you want to make your first impression, so be it, but I do not have to allow you to be a treating physician in MY life.

Hopefully this gets straightened out soon and I can move on to a different doctor who isn’t a rude snit. I am fine going elsewhere if they don’t have someone who can handle themselves in a professional manner.

I know a lot of people who only want to deal with female doctors, and by all means, have at it. I’m a girl’s girl to the core, but my experience with most female doctors has been horrible. This one was exactly how I thought she’d be, and that’s sad. I had zero hope for her when I made the appointment to begin with, and now, I am sorry I didn’t push harder for someone else.

Ultimately I will do what I have to do to take care of myself and prioritize MY health, but I’m not going to do it with anyone who cannot be respectful of me. Note to self: Listen to your intuition, and don’t ever take shit from someone simply because they’re a doctor.

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

Stressful Sleepless Nights

I have long since passed “tired” and have reached a state of pure “painsomnia”. No matter what I do, I am in too much pain to sleep properly, if at all. Physically, mentally, and emotionally, I’m not in the correct head-space to allow my body to rest as it needs to. It’s twisted when anyone who suffers as much as I do is completely unable to sleep at times.

Most nights I am sound asleep by three a.m., if not earlier. Last Wednesday night, no matter how many times I tried, sleep alluded me. I had my alarm set and finally got frustrated and said “Fuck it!” I knew there was no way I was going to fall asleep because I couldn’t shut my brain off and the pain I am in is over-the-top excruciating. When you cannot see past the pain you’re in, it’s bad. Pain, as it turns out, is a definitive breaking point. It is exhausting, it is draining, and it makes you feel insane. Your entire body goes on high alert.

I have tried everything to break this cycle, and yet here I sit, trying to figure out how to reach some type of “pain-free” state. But really, what are my options? The emergency room? Kratom? CBD oil? I have NO idea. If I understood the root cause of the pain escalation, I could at least handle it from a medical perspective and make a decision as to how to proceed. However, I am being waylaid by every single doctor that is supposed to be treating me. And lets face it, Kratom and CBD oil aren’t covered by insurance and they can be quite expensive over time. Yes, they are natural methods to relieve pain, but I can say I know very little about CBD oil, despite extensive research. I only know some people swear by it and others say it doesn’t help them, which definitely makes me question the enormity of such an investment. A friend even found a company willing to give me a huge discount, but still, it’s a lot of money for a “What if?”

I have an appointment in a few weeks with my soon-to-be fired primary care physician. The first time I was in her office, I noticed she had pain contracts for her patients in each room. It left me sour on the whole thing because I also noticed an influx of patients that were clearly there for monthly drug tests and new prescriptions. The restrooms are FULL of testing supplies. It looks more like a lab. So, while prescription pain medicine is covered by my insurance, do I want to subject myself to monthly drug tests? No. For one, I’ve never taken narcotic pain medicine daily, and if I did, it was in much lower quantities than prescribed. I’d fail a drug test because I don’t take six pills a day, or however many might be prescribed if I were lucky enough to be taken seriously. Asking me to “bring my bottles” so my pills can be counted and “pee in a cup” each month is treating me like a drug addict when in fact, I am a pain patient. Moreover, I find it interesting that I had to wait two and a half months to be seen for something serious, but she can see other people monthly if they’ve signed a pain contract. It’s insulting. She flat-out said, via that infamous e-mail, that I should “go to the emergency room” when I have a paralytic attack. As if they happen daily and I am able to call for help during said attacks. Instead of being a responsible physician who orders the correct tests prior to my coming in, she blew me off. I will be printing up the entire exchange before she has the opportunity to delete any such evidence. They might just be e-mails, but I honestly never know what a doctor might do to cover their own ass.

I have ZERO trust or faith in this woman to properly treat me, and that is precisely why I have to move on. The second I have a scheduled appointment with the new physician, she will no longer be listed as my primary care doctor. I can still switch at any time. That is a comfort because I’m sick of not being taken seriously.

My migraines are still eating away large chunks of my life. It took the neurologist quite a while to get back to me, but when he did, it was a short message to tell me he could put me on another class of medication. I called him back and said “I’ve been on all of those already; they don’t work.” If he’d requested my chart from my previous neurologist, he would know all of this already. He did not address my request for Relpax or a new anti-nausea medicine, he skipped over it like I hadn’t said anything in the three messages I left for him. I’m sick of playing phone tag. If he can’t get this straight, I can’t keep my appointment at the end of next month. It’s an inconvenience to begin with and the man lacks the ability to listen and actually hear you. It’s not my job to do his for him. Why should I repeat, and pay for, previously failed medications? I care about the crazy chemicals that go into my body and as a patient, I have the right to say no. I played stupid when I said “My insurance does cover Relpax, they just need to hear from you.” and “I belong to a migraine support group and this anti-nausea drug is talked about a lot, do you think I can try it?” A close friend also recommended the anti-nausea medicine, but he only needs to know the basics. Instead of appreciating the fact that I’m an educated patient, he would much prefer for me to be a moron that simply says yes to everything he says. Yeah, that’s not going to happen on my watch.

I’ve decided that if I can’t survive this coming week on over-the-counter pain medication for my back and neck, that I am going to the emergency room. The doctor can kiss my ass if she doesn’t like the decision because ultimately, the hospital CAN admit me, even if only for a few hours, and run all of the necessary tests. If they did, for example, do a drug test, they would find I am 100% drug-free, so they wouldn’t be concerned about giving me pain medication, providing they deemed it necessary. Trust me; I’ve never thought it was more necessary than I currently do. I’ve had broken bones hurt a hell of a lot less than my back and neck do. 😦 I can’t even sit up straight or do anything to stretch my muscles out gently without causing the pain to worsen. And yet, I am the moron popping Aleve, using a heating pad in July, and alternating with ice packs because I am also running a fever. But according to the physician’s assistant “It’s probably just the weather or like your allergies.” If you are trying to be any kind of professional, drop the Valley Girl routine. It’s not cute.

This week I get to meet a new doctor and someone who I believe will be temporary. I’ve once again been handed over to a student, after specifically requesting “no one temporary” (I heard myself say it, so I know it’s not my imagination.), and I will likely have something to say about that after the fact. I am on an incredibly short fuse, so I’ve decided that both people get exactly two chances with me, if that. I legitimately don’t want to go, don’t want to discuss a damn thing except the outrageous amount of pain I am in, and don’t want to waste my time, but again, two chances. If I’m feeling nice (I’m rarely nice.). I hate forcing myself to do things I am not okay with. Chances are if I can’t stand the sound of your voice on the phone, we will NOT get along well in person. I know precisely how intense I can be, and I’ve only recently realized it’s because I’ve been badly burned by certain types of people and I won’t allow the cycle to continue. While some people will say, and have, “You enjoy giving off the impression that you’re a bad ass.”, I don’t think it’s actually occurred to them that I AM a bad ass. You can be a lovely human-being and STILL be a bad ass when you have to be. Believe me, being a bad ass is far better than wearing “the bitch card” 24/7. A bad ass is a position of power where you make all of the important decisions and stand your ground, and it trumps being a bitch every day and twice on Sunday.

I once questioned who the hell a person was without passion; without something they stood for and believed in. I said this in observation of someone else. I said something along the lines of “What does she stand for? She lacks passion. She’s too worried about what others think of her to concern herself with what she thinks of herself.” I vowed not to become a person like that, to always know who I am and what I stand for. So whether it’s advocating for my health or speaking my mind about something specific, I want to come in fighting strong. I feel like hell, but I do not have to look like hell and I don’t have to ever act weak because I am NOT. I am human. I have horrible, bad days. I am stressed, functioning on no sleep and very little caffeine, and there are days I want to break down and hide. But ultimately, I don’t have a choice in the matter. I am doing my BEST. It sucks, it’s not easy, and there are days where I live in pure fear of how far I have fallen, but no matter what, no one will ever be able to say I had zero passion or thought.

She is brave, she is strong.
She will get up whenever she falls.
She knows herself inside and out.
And though she may face challenges, 
she will face them with courage and hope.
And though she be but little,
she is fierce. -William Shakespeare

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

The Summer Of ‘What The Fuck?’

4outof5
Under the tomatoes, where no one will look? I’m sorry, did I say that out loud… LOL.

I promised myself certain aspects of this year would be better, and they have been, but the rest of the year, thus far, has been a shit-show of epic proportions. I am so thrown by it all, I probably say “What the fuck?!” fifty times a day, if not more.

I’ve talked about it, so by now (unless you’re one of my newer subscribers) you’ve probably heard me say I’m blacking out/losing time. It’s been going on for over a year. I FINALLY go to the appointment with the new neurologist and instead of allowing to me speak and elaborate on this, he barely grunts about it. It was completely dismissed, as was a lot of what I said. He has all the personality of a wet mop someone has recently disposed of. Before I could finish speaking, he was out the door. Does he sound like someone you’d want as your doctor?

Obviously as a migrainuer, this was not my first rodeo with a neurologist. It is, however, my first time seeing one I’m completely unfamiliar with. I do NOT like him. I had such a solid relationship with my previous neurologist; he was like family. He always treated me with respect, he always listened to my concerns, and to this day, I still recommend people to him because I think he’s one of the best migraine specialists. The first two neurologists I was subjected to were complete jackasses I wouldn’t refer anyone to, be they human or animal. Reptile? Maybe.

I had no idea what to expect from this doctor. I read his reviews and they were not the least bit stellar, but I read them too late to cancel my appointment. Many of them stated he should have his license revoked, most people stated he was a highly dismissive, rude “physician”, and one or two said he’s an amazing doctor and they didn’t understand all the negative reviews. He must drink coffee on the days he meets the five-star review folks because grunting and muttering and being dismissive only pissed me off. It’s difficult for me to wrap my mind around the list of reviews because people don’t normally write reviews unless they’re motivated by positive or truly negative experiences. My experience left me with no feeling at all. I cannot deal with someone who does the bare minimum, doesn’t answer my questions, and then puts me on medication I’ve already been on. The pharmacist, at least, answered my questions. Don’t tell me generic names and expect me to know what the hell you’re giving me; tell me the brand name like you’re an actual doctor, regardless of what the insurance company pays for. Spend more than ten minutes in the room (The waiting room was empty, I have NO idea where they’re hiding his patients.), and please, do NOT think you’re doing me the biggest favor in the world by saying you’ll put in for prior authorization for treatment you had no idea my insurance even covers. I called them, despite already knowing the answer, and it’s covered, but I’m not 100% sure I trust you to do it because it involves a lot of fucking needles. I might ask a local tattoo artist instead. 😦 At least they work with needles every day.

After openly declaring I have “chronic migraines”, to which I wanted to say “Where the hell did YOU go to medical school, Sherlock?”, but refrained, he provided no rescue medication and no abortive medication, claiming my insurance doesn’t pay for it. I was only too happy to call him and inform him that they do pay for it, and to please contact them immediately for prior authorization for Relpax. If my insurance will pay for twelve pills a month, why shouldn’t I have it on hand? He merely put me on a beta-blocker and an anti-nausea drug that’s about as old as he is. To say I’m not happy is a gross understatement. That’s not effort. He was truly out of the room and down the hall before I could finish blinking. That’s not efficient; that’s half-assed.

To be fair to myself, I am writing up my concussion, migraine, and Fibromylagia history moving forward because I refuse to leave the diagnosis out ever again. My primary blew it off when I used the words “Physical pain from my neck to my toes.” She didn’t even look at me, she focused solely on the migraines and pretended like I hadn’t just explained something requiring a Rheumatology consult, though many rheumatologists are now passing Fibromyalgia off to neurologists. I am NOT dumbing myself down for another doctor. Let her diagnose it properly. The doctor who did diagnose it over a decade ago never put it in my chart. Mind you, when he put me on Cymbalta, at my request, because I had researched it extensively before it was even in pharmacies, I told him how much it helped with the Fibromylagia pain, exhaustion, and physical weakness. He allowed me to take 360 mgs of it for eight years, yet when I said “How is this diagnosis NOT in my chart, he replied “I don’t recall us ever having this conversation.” Dude, in what world would I take 360 mgs of Cymbalta that does NOT work for most people?! In what world does my insurance company approve that much medicine each month when the highest dose most people take is 120 mgs? It angers me greatly to feel jerked around like that. If my primary refuses to listen and/or refer me out, she still needs to know about the original diagnosis and that it was omitted from my chart. If she’s not happy that I didn’t tell her the first time, well, I’m not happy that she chose to ignore me, my blood work, and other things, but conveniently billed me $627 for what should have been an office visit, but actually looks like insurance fraud from where I’m sitting. I’m more than happy to tell her this to her face next month when I see her. She is overbooked, her office staff is negligent, and cannot get a proper message to her to save their life. I NEVER want to be subjected to her Physician’s Assistant again. That woman needs a brain. I shouldn’t have to wait two and a half months to see my primary care physician, who is, quite frankly, minutes away, for ANY reason. She’s not a brain surgeon.

To add insult to injury, when I called her office to ask for a referral for a second opinion after the neuro consult, she refused. “I went over his notes and he’s trying to get you the treatment, so you have to go to every follow-up and do what he says.” Um, who the fuck is the patient here? I can confirm that she has already lost me as a patient for the duration. I will say what I need to say and follow-up, but I am on a waiting list for a new primary care doctor for November, at the earliest. She made the blondest brunette mistake of sending an e-mail to me instead of her assistant. It wasn’t meant for me to read, clearly, but I did read it, and she cannot take back that sort of “mistake”. Once again, she blew me off. After constantly saying I needed to be assessed by her, her e-mail stated I should “go to the emergency room” during paralytic attacks. Apparently she doesn’t seem to grasp the fact that when you experience temporary paralysis, you are unable to move and unable to dial the fucking phone. I’m also ALONE when it happens, and it is TERRIFYING. It is almost always from the neck up or it’s the entire left side of my body, and the fear you feel is gut-wrenching because you never know if this is the next thirty minutes of your life, the next three hours, or if you turned wrong and this is now permanent. How would she like me to get to the ER? Via flying carpet?

If she blows me off at my appointment in any way, shape, or form, I will be on the phone to the state licensing board in a New York Minute. I’ve witnessed some heinous crap regarding my treatment in this state and I am NOT going to tolerate another second of bullshit from ANYONE.

I talked about not liking the whole “temporary” situation and I have to say I was disgusted when “Ms. Temporary” had her office call and cancel on me. My doctor called later on the same day because when he heard about it, he knew I was going to react badly. Despite planning on canceling myself because I simply don’t want to waste my time, or hers, I felt like it was a terrible first impression to force me to make an appointment in the first place and then cancel on me without an explanation. He assured me she’s the most reliable person in the world, and that he wasn’t sure what had happened, but he wanted me to know it was more than okay for me to feel justified in not wanting a temporary situation with anyone. Unlike most people, he genuinely gets me, and the affirmation of that was good to hear. Most doctors would NOT have called to check in with me over anything, but he did, and it meant so much to me because we were on the phone a long time. He was touching base and we went over a lot of different things. I know he was concerned based on what we were discussing, but he also said he trusted me. He probably shouldn’t, but I’m also very careful in how I speak to doctors. I’d never put them in the situation of not being able to trust me. I’m not stupid. The choices I make generally have no bearing on the doctors I am seeing.

I left him a message on his last day to thank him for talking me down, because he didn’t have to do that, but he did, and when I thanked him, he said “I’m here for you. My biggest regret is that I was not able to do more to help you.” There are doctors twice his age who would NEVER admit that to a patient.

When I checked earlier, one of the reviews I’d written for him had finally posted. At least he gets to move forward as a doctor with a five-star review. It is the only review he has. Most doctors don’t have them, for obvious reasons. I still have many more to write for him, but each one is the truth.

I did make an appointment with the doctor he recommended, but I told him not to expect anything out of it because I don’t have any trust to offer her. He said “That’s understandable. Either she’ll earn it, or she won’t.” I see why he chose her, but I reserve the right the judge her for myself. I don’t think I said that to him out loud, but he probably knows I’m not going to make it easy on her. She could be lovely and I’ll still find fault with something because she’s not who I want to work with, period.

He is the person who was disgusted by how my primary blew off the pain I’m in; he thinks it’s wrong that I should be suffering so much and be ignored by anyone. He is also the person who was mortified that my blood work and a high fever were blown off, as though they were no big deal, when in fact he agreed with me that neither of them are normal. I’m almost certain he wanted to ask where the Physician’s Assistant went to school, because he’s a very calm, laid-back person, and his voice is always even, but his entire tone changed when I told him what happened. Technically, despite being out of med school and having his license to practice, he’s still completing his residency, but his professionalism outshines people twice his age because he dots his i’s and crosses his t’s. He asks the right questions and doesn’t blow you off. Aside from clearly having the right kind of mind for this sort of work, he obviously had excellent teachers, as well. But ultimately, it comes down to being the right kind of person to be a doctor. Everyone’s mind works differently. His works from a “How can I understand this?” perspective, which, to me, is interesting because I had to answer some of his questions from a “How does he NOT understand this?” position, where I answered him, but tried not to roll my eyes, and sometimes, I flat-out DID roll my eyes at him.

A lot of people meet me and don’t know what to make out of me. I completely baffle the fuck out of them, and I openly admit I get a kick out of that. In six weeks, this person grasped me fully, appreciated my honesty and sense of humor, and made me feel a lot less damaged than I probably deserve to feel. Between our meetings and every single conversation we had in between, I don’t think I’ve ever felt more comfortable or at ease with someone. And it dawned on me that the ease of the doctor/patient relationship felt more comfortable because he felt like a brother or a close friend. I didn’t tiptoe around him, walk on eggshells, or pretend. I was always myself, and ultimately, I was accepted for that completely. It IS rare, so I have every right to say that I respect him and appreciate everything he did for me. I’m also unashamed to admit that I will track him down like a dog with a bone if I’m not able to find someone better who is fully able to do what he was able to do.

I am fighting for my life, my health, and for proper treatment. I REFUSE to dumb myself down for another doctor or ANYONE in the medical field ever again. I may be a pretty mess, but I’m also smarter than I let on, and it’s time to break all of that out and give doctors a run for their money. But I’m also not going to trust people simply because they think it’s a given. It isn’t. I trusted ONE person this year to take care of me properly because he earned that trust the second he introduced himself. Some people have positive energy, and others I don’t get the same vibe from. Being able to read people is a gift not everyone possesses, but it’s a gift I have. I can tell you a lot about someone just by sitting down with them for an hour or two. Often times, people think they’re getting to know me, but in actuality, I’m the one getting all of the information. People don’t realize how much their behavior, speech, and physicality gives them away. You can obverse a lot if you’re paying attention, just don’t expect to be able to read me. I’m not the “open book” type.

I’d forgotten how dishonest people actually are, at times, with their physicians. I don’t think you need to tell them every single detail of your life, but I do think they need to know what’s going on in order to help you. Set realistic goals and say what you mean, as opposed to what you think they want to hear.

Being told that I “know myself really well” and that I “did not come in asking for the magic pill that solves everything” were two of the greatest compliments a person could give me this year. Yes, I’m realistic, but I’ve also been through hell. I know that certain types of medication can help certain types of people, based on where they stand health-wise, but I also know there’s nothing that will help me moving forward for one specific thing, and as sad as that is, it’s life. There’s nothing I can do about it. You keep going until you can no longer go on, and you don’t listen to external “noise” telling you what you should or shouldn’t do, or what you should or shouldn’t “live for”. Unless you live inside my mind, suffer the way I suffer, experience my pain daily, struggle through the inability to sleep, function, react, and can while you’re going through all that, still be able to hard enough each month to pay all of my bills, you simply don’t get a say in how I live my life. I sit in judgment of no one on this front. I don’t say meaningless shit to people in order to make myself feel better. If I’m concerned about someone, I think about THEM and I say what they TRULY need to be told, not what they want to hear. No matter how hard I struggle sometimes just to get through the next five minutes, I still listen to others with compassion, care, concern, and genuine love. I’ve never turned a friend away. I have loved people and I have lost people, and I don’t ever want to question if I could have said more, or if I could have worded things better.

I’m looking to find out how to manage my migraines better, and find the best way possible to manage the chronic pain I am in, so I will be pushing for an MRI and x-rays of my brain, neck, and spine, even if it means a trip to the emergency room. Not being able to move my neck properly and being afraid that every turn could mean permanent paralysis is scary. My current doctor refused to have my back, so her “reward” is losing me as a patient. A new doctor gets me as her patient in a few months and her reviews are really good (This time, I looked immediately. No more surprises.), so I hope it’s a more promising situation despite the fact that she’s further away. There’s absolutely no reason that well over one hundred primary care doctors and internists in the Boston area aren’t taking on new patients. I thought I was losing my mind making phone calls until I finally found a doctor in another doctor’s office who just happened to be accepting new patients. I can switch to someone else immediately if something is wrong, which is good to know, but I feel like I’ve given this other doctor enough chances at this point. She has one efficient person in her office; her assistant. I cannot stay there just because I like her, nor should I.

So here I sit, on a muggy July morning, and honestly, the pain I am in is intense (I took two Aleve for it hours ago…an absolute JOKE.) and all I want to do is scream and cry. A huge part of me wants to go to the emergency room and demand they help me, but a larger part is afraid they’ll do nothing at all for me. As many times as I’ve fallen since moving here, I KNOW my back isn’t okay. I can feel it. I’m too young to have this much damage and this much pain. As many times as I’ve banged my head into the wall in my sleep (100% unintentionally. I’m restless, fitful, and I throw my body around a lot. I’ve also thrown pillows across the room and accidentally kicked Kitten off the bed a few times because I had no idea she was even here.), I know my head probably isn’t okay, either. I’ve failed two baseline tests, one in May and the other this month, and a Physician’s Assistant and a neurologist both ignored these facts. The brain doesn’t lie, and my poor back and neck aren’t amused by my having to use a heating pad when it’s 90+ degrees outside. Alternating between heat and ice only helps for short periods of time when you’re in excruciating pain. It lets you know it’s not a muscle spasm, but something serious.

I hope and pray doctors start taking me seriously, and SOON. I don’t know how much longer I can hold on without some serious intervention.

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

idontfucking
Unless I am passed out from lack of sleep, in which case, I will call you back the second I see your message or missed call. Only certain people have priority clearance and can bypass the “Do Not Disturb” feature on my phone. If you’re calling at any of those hours, you’re probably on the list.

 

Writing With Purpose

cautiontape

I’ve had a couple of rough weeks, though in truth, I’d have to say “rough decade”, but I’d prefer to focus on the present. Some of it I would prefer to address in a future piece that is nearly completed, but the rest I’d like to get out of my system. Unfortunately, I don’t even know where to start.

Like any intelligent writer, I think things through. I don’t “wing it” and hope for the best. There’s an art to how you write, how you speak, and how you communicate. Sometimes, I wish everyone were as gifted with the written and spoken word as I am, but I realize that’s not realistic, or fair, however, it leaves me incredibly frustrated with some of the people in my life and how they speak to me.

My being an incredibly private person isn’t a secret. In fact, I think it’s pretty well-established. However, a few people crossed some very serious boundaries with me over the past few weeks and they are utterly fucking clueless that the boundaries exist. The sad part is; I’ve had to establish these boundaries multiple times with the same people. Only one of them can legitimately say “I forgot.” because she is going through a health issue that affects her memory. It’s not an excuse, but it’s her only “Get Out Of Jail Free” card with me, and even that is getting slim these days. The other person is just plain being an ass, and I am not okay with it. I don’t find it cute, humorous, respectful, etc. I don’t find someone’s sudden interest in my life acceptable behavior. You cannot suddenly ask me deeply personal questions and expect an answer from me. I don’t care if you’ve known me for twenty years or twenty minutes; I still have boundaries. When I say “I am not going to discuss this.” that’s precisely what it means. I don’t owe you answers.

From day one, I have openly and honestly discussed my medical issues and struggles. I have kept my doctors names private, for obvious reasons, and I’ve kept personal details private. I’d expect most of us to do the same. What I write about in terms of subject matter may be open and honest, but my private life is still PRIVATE. Privacy, while scarce, still means something to me. Yes, you can read this and subscribe, but I don’t owe you every tiny detail of my life (Don’t worry, you’re really not missing anything.).

My closest friends are smart enough not to push my buttons (Well, apparently not all of them are so smart.), and yet, so many of you, over the years, have sent me the kindest messages to let me know you care, or that you’re listening, or that my candor has inspired you in some way. That means more to me than someone being nosy or invasive simply because they feel entitled to push me for “answers”.

There is no magical substance on this planet that is going to heal and/or fix me. I have ALWAYS known this. It’s called “being honest with yourself”. Prescription medications (probably over fifty, if I add in all the various migraine meds), several courses of Eastern medicine, enough vitamins & supplements to open my own GNC, eating the healthiest foods you can think of, etc., and nothing has made anything better. I exercised obsessively at times, three times a day, in an attempt to try to “control” what was going on internally and allow the external aspect to take over. It didn’t work, not for long. I’ve lost over thirty pounds in the past month and a half. Can I afford to lose more weight? Yes. I’m not worried about the weight loss, but I am worried about where I stand from an emotional standpoint.

When I inevitably told a few people what was going on post-diagnosis, only a few people rallied around me. One person checks in with me daily to make sure I’m okay, even if it’s just a few quick texts back and forth. Another checks in about once a week, when she can, and again, it’s the thoughtfulness behind the gesture. It’s someone saying “How are YOU?” and genuinely caring, instead of trying to fix me or making me feel lesser. I call that acceptance. We raise our children to accept everyone precisely as they are, but as adults, there is very little acceptance of anyone who is different from us. I find it disgusting, especially when it comes from those who are supposed to love and care about us. You truly learn who is on your side during rough times. People say one thing, but do something else entirely, and they don’t factor in whether or not what they’re doing might be hurtful.

I do not expect anyone to get on a plane and hold my hand, because that’s not going to fix anything, but would it be great for the majority of people in my life to be less self-involved and self-centered? Yes. However, I expect nothing from others because that is ultimately what I get, no matter how much I give. It is important to give to the right people, as opposed to those who can only give you small percentages of themselves.

You might visit other places on the Internet and find a person listing their entire physical and mental health diagnoses from A to Z. They have the right to do so because for many people, that is where they get their support and it’s also where they feel safe to vent, but that’s not what anyone is ever going to get from me. I might vent, but ultimately, venting has never been my goal.

First and foremost, I am a writer. This is a writer’s platform, NOT a blog. I am NOT a “writer who blogs”, but a writer who uses her voice as a platform to speak my mind, and to properly use the platform I am given, I cover topics that matter to me, and others, and I say things other people are often afraid to say. I advocate where I can, when I can, but I’m imperfect and human. A lot of people are afraid to use their voice for the purpose(s) in which I use mine, but I utterly lack the ability to be shy. I have moments of quiet observation, but I assure you, I am NOT a shy woman. I catch myself at times having to bite back my internal dialogue because sometimes, my inappropriate comments have a mind of their own and they desperately want to come flying out of my mouth. I try very hard to be tactful. but sometimes, I genuinely don’t give a shit how I come off to someone else. Okay, that’s nine days out of ten, but I TRY.

I have never intentionally hurt someone I have professed to love and/or care about, but I’ve had so many people say those words and intentionally hurt me in the process. I live my life with a “live and let live” policy. You don’t hurt me, and I’ll let you live. 😉 All kidding aside, I don’t see what anyone gains out of saying something nasty, aggressive, or hurtful to someone they say they love. How does that make you a better person? How does that make life easier? How is that helpful?

I will never be a “Kill ’em with kindness” kind of girl. It’s disingenuous to me to “fake it ’til you make it” with others. If I can’t be 100% real, then I can’t be in your presence. I’m tired of biting my tongue.

Some people will always be comfortable talking for the sake of talking, or in this case, writing for the sake of writing. I prefer to write with genuine purpose. I want my words to have meaning and value to the person on the other side who is reading them. Sometimes I will make you laugh, and sometimes I might make you cry. There are times I will make you think, but ultimately, if I can provoke you to walk away better, stronger, smarter, or more of any one thing in life, then I, as a writer, have done my job.

If you haven’t noticed the boundaries, there’s caution tape up. Please be sure to stay behind it. In the meantime, I’ll be here with Cat, Kitten, and my fucking Invisibility Cloak, lest someone gets dumber with me this week! After all, it’s ONLY Tuesday. Someone’s bound to screw up or dig themselves a deeper hole. I am rolling my eyes with anticipation. Yes, I’m being sarcastic and snarky. Much like high cheekbones and heterochromia, they are two of my best features. 😉

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

caution

Trying To Cope

11182314_391118801075909_4844715758370178550_n

Have you ever wondered if you’re trying too hard? If you have to question yourself, then you probably are. But what if you’re being told that you aren’t trying hard enough? It’s incredibly confusing, and downright counterintuitive, to have someone tell you you’re not trying hard enough when they don’t actually see how hard you try to begin with. When they only see a small percentage of your daily battle. Alas, welcome to my world where I’m never good enough, not unless I’ve somehow done something magical to meet someone else’s approval for the week. And even that is never truly “good enough”. I’m constantly met with a disapproving face or attitude, or something to let me know what a complete and total letdown I am. If you can explain to me how that is “being supportive”, I will buy you a fucking lottery ticket.

I am a firm believer that if you truly love and care about someone, you use your words. When someone is going through something horrible and you can’t be bothered to check in with them and see how they’re doing, but you can be bothered to talk to them about nonsense, there is no way in hell the person feels loved, cared about, heard, etc. They will NOT come to you with anything serious because you’ve already proven to them that you don’t take them seriously; that their life, their pain, suffering, etc., is a fucking joke to you. If you want your love and concern to be taken seriously, you have to bring it to the table. It cannot wax and wane like the moon.

I absolutely HATE hearing anyone tell me they “don’t know what to say to me“. Good. Say NOTHING. Be silent. It tells me everything I need to know, truly. By being silent, you’re reaffirming what I already know.

People who never ask how I’m doing, but are happy to come to me with their issues drive me INSANE. It makes me feel even more invisible. There’s never even a polite “Hey, how are you doing?”, it’s just “Let me tell you what I’m going through.”, because apparently the world revolves around other people and their idea of “problems”.

Here’s my take on this: If you’ve got a roof over your head, money in the bank, a good job, a working vehicle, food, health insurance, clothes in your closet, money to buy medicine if you aren’t well, and can pay your bills each month without ever being broke, and you’ve got the majority of your health (or all of it), then I genuinely don’t want to hear your “privileged people problems”. If you’re sick, suffering, struggling, truly battling something real, and understand how hard it is to survive in this world, then I am more than happy to listen, but I can’t do the privileged bullshit crap. If your wealthy family can bail you out of a problem in a New York Minute, then I have a hard time relating because if I need to be bailed out, it’s probably because I’ve finally killed someone. My “family” has made it clear that they enjoy seeing me suffer and do not care about my pain. That my losses are basically icing on the cake for them. Does that sound loving to you? That’s because it isn’t love; it’s hatred. I genuinely hope that one day, one of them needs a bodily organ and I am the ONLY match in the world that could save their life. I’d rather give that organ to an inmate on death row.

Call me crazy, but I prefer to be spoken to, not AT. I honestly need to start charging people for the “therapy sessions” I am providing because it’s gone too far. If they respected my time, then maybe by receiving a weekly bill, the 10:00 PM-5:00 a.m. texts about bullshit would stop. The hours of Facebook Messenger nonsense would stop. If a pop-up message comes up while I am writing, you’ve just cut into my hourly rate as a writer, which is quadruple my editor’s rate. If you interrupt me while I am writing with dramatic bullshit, I should be able to bill you. Unless you’re my brother, best friend, a doctor, or the two women I call sisters, then you probably don’t need to be contacting me after a certain hour unless there’s a death-defying emergency (and how many doctors would be calling after ten o’clock? None I know.). Truth be told, I’ve lost my ability to care.

My cousin had the audacity to tell me that he & his wife are “always here for me because ‘that’s what family does for family'”. I wish all of you could have seen the look on my face when I read that message. The one time I asked him for a favor was well over two years ago. He made excuses and said no, all after having given me the “I’ll do anything for family” rhetoric many times before. Clearly this is a selective thing. “I can be there for you when it’s CONVENIENT to be there for you.” That’s what it really means. That’s why it annoys me and that’s why, ultimately, it pisses me off.

A lot of his invitations over the past year or so have been super last-minute and I’ve had to say no. You can’t give me 24 hours notice for anything and expect me to show up. You’ve got to give me a month or so. I must have the physical, mental, and emotional energy, and you have to know a holiday gathering of 50+ people is NOT how I want to spend my time. I’m not married to you, or your wife, and I am not obligated to be a part of these gatherings. I’m family, yes, and thanks for including me in your thought process, but I’m pretty much always going to say no when you ask me at the last-minute.

Now it may have bothered him that while I did not attend his son’s Bris after being given four days’ notice (I was sitting Shiva), I did turn around the following weekend and meet up with my sister, Britt, in Boston. He didn’t say anything and quite frankly, Britt and I had those plans for MONTHS. However, not once has my cousin even offered to meet me halfway. He could be in a neighboring town and not even say “Hey, do you want to get a cup of coffee.” If I did that to him, I’d never hear the end of how I was in his part of the city and didn’t stop by. Drama, drama, drama.

I firmly believe that if you really want to be there for me, you will be. He speaks for both of them (I HATE when couples do that. It nauseates me. I can’t speak for someone else; it’s rude. That person has a mind and opinions of their own. I’m also smart enough not to stick them with my family! Escape while you can!) and I wanted to respond and say “There’s no way in hell I am going to ask either of you to be there for me! You have a new baby and while your heart might mean what you’re saying, we both know you’re not going to show up for me, so thanks for the sentiment, but you won’t be hearing from me.” Like, EVER. (To quote Taylor Swift.)

Have I mentioned I can’t stand his wife (I’d NEVER say this to him and hurt his feelings. For some unknown reason, he thinks she walks on water and performs miracles. Ad nauseum.)? Now that she’s not pregnant, she’s behaving differently towards me, but I will probably never be able to get over her bitchy rudeness directed solely at me while she was pregnant. I checked with other family members to see if it was her normal behavior or an isolated incident and apparently she fits in with that side of the family really well because it was directed only at me, which makes me extremely wary of her. I have made all of my close friends promise to have a “Come to God” meeting with me if EVER I behave like that towards the kindness of others while pregnant. One of my closest friends said to me “You’re not a piece of shit, so I can’t imagine you ever being so ungracious to someone. She was really fucking rude to you.” Sometimes, it’s good to get that extra feedback so you know you’re not crazy.

I’m going through all of this disturbing, upsetting misery day in and day out, and I legitimately hear from three people daily because they actually care about me, and my best friend e-mails me on the weekends. Everyone else is purely radio silent, until THEY have a problem and then it’s all about them. And like I said, they don’t ask how I’m doing, they just start talking at me. Not only am I invisible, apparently, I also have zero emotions or emotional needs to be met. It’s always nice to know this is how others perceive me. As a sounding board. Or a door mat for people to wipe their feet on, so they can walk away feeling better about themselves.

Over the weekend, I ducked into PetSmart to grab a bag of cat food. There was the most gorgeous green, orange, and yellow parrot there. Birds don’t normally come up to me, but this one did. They don’t usually make noises and do tricks for me, but this one did. It made me emotional, because I felt like this bird understood me. I wanted that bird. I’ve met so many birds over the years, all different types, all different sizes, but I’ve never wanted to take one home before and have a new friend.

I feel completely abandoned by Cat and Kitten. They used to spend time with me and care for me, or they’d hang out with me and be loving, but now they eat and sleep, and at three PM each day, they come downstairs and start staring at me, waiting to see how they can con me into giving them their dinner early. Mind you, they do NOT starve and they have food and fresh water all the time, but they’ve become regimented in their meal-times and it’s seemingly all they care about. They have their separate spaces, their cat beds, and zero interest in what I am going through. This, I am certain, is why people have dogs. Alas, I’ve got no energy for one, or the room. Or the patience and tolerance levels required. At this point, I’m best suited for a pet rock, and even that is a stretch. 😦

I’m quickly becoming one of those people who is going to spend the rest of her days talking to herself, getting answers back. Oh wait, I already do that! Excuse me while I go back to producing a flood of tears.

American Horror Story: Lisa’s Life

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

Incurable

                                            ***Potential Trigger Warning***

Friday night, I stupidly read my new diagnosis for the first time. And then I sat here in tears. The old diagnosis, which I’ve had for a long time, is clearly nowhere near as serious as the new one. My doctor isn’t even sure how it ever even fit because he doesn’t see it, and I do think it’s a case of having fresh eyes and a fresh perspective, as well. He did NOT try to box me in, but he answered me because I asked. I needed to know what the hell this was.

The new diagnosis basically states that nearly 60% of sufferers, or more, as it ranges from country-to-country, die by suicide, regardless of age. I was stunned into terrified silence.

I have always said I didn’t want to be a statistic, but reading the documentation; I feel like one.

As I stated previously, there are no treatment options left. I can wait ten years and hope a medication is approved by the FDA, but mostly, I am on my own. I cannot fathom ten more minutes like this, leave alone ten years, or longer. Hope is kind of futile at this point for me.

There’s a person in my life (heretofore to be referred to as “The Idiot”) who cannot think about anything but the future. I suggested they take things one day at a time during a stressful period, so as to help them help themselves focus, and they told me their “brain doesn’t work that way. That they must constantly look ten, twenty, and thirty years ahead”. I was astounded by the insanity of that. Especially knowing that there is a strong possibility they might not live that long. I take everything one hour at a time. It helps keep me focused. It keeps me in the moment, because I don’t have a crystal ball and quite frankly, I am not looking that far ahead. Nor do I care to do so. For me, life just doesn’t have that level of longevity any more. Truth be told, it never did. I always knew that.

There’s something very difficult, and exceptionally disheartening, about reading something on paper and realizing that every hope and dream you’ve ever had has been impossible to achieve because it’s likely never been meant to be. All the things you’ve wanted for yourself aren’t going to happen because something serious is interfering with all of it. It’s NOT you, it’s an incurable illness you never asked for and it’s destroyed your life immeasurably.

Thus far, I’ve only managed to tell two friends. One told me I needed to fight so I could stick around and “help keep her sane”. She means well, but that wasn’t the answer I needed to hear. I intentionally withheld the info from someone who I am afraid will be triggered by this. She has been through enough and I cannot be responsible for my health affecting hers. Other people might be triggered by this information, so while I am not disclosing what the actual diagnosis is, I am telling each of them in my own way.

I will not be discussing this diagnosis with close family members. I know that none of them care. I have slowly started to see their selfish, self-absorbed, self-righteous natures and I find it utterly despicable. I am grateful that I do not resemble a single member of my family and that we possess almost none of the same character traits. They live on their own planets, and I live in reality.

It hurts me deeply that out of everyone in my family, I would be the one afflicted like this while everyone else is allowed to live a normal life, or as close to a normal life as possible. It feels like the cruelest curse in the world. That’s not jealousy talking; that’s honesty. One illness is enough of a burden, but for me to have spent the majority of my life suffering is pure evil. To have to battle all of this alone makes it so much worse.

I have chosen to take a pass on all things temporary. I don’t need that in my life. If someone cannot be permanent or semi-permanent, then I don’t need them right now. I need solid support all across the board. I don’t have time for games or bullshit. I will be informing my doctor of that before he leaves. He can pass that message on because I know after we talk, he’s going to be very concerned. I don’t care how I sound or come off this time because I’m not here to worry about his feelings. He can contact my primary if he’s concerned, or whomever, but that isn’t going to make a difference at this point. I refuse to see the doctor he wants me to see. I’ve had terrible experiences with certain types of physicians and while this doctor might be wonderful, I don’t have any trust to offer this person. I will look for someone else when I’m ready. There’s a six month wait for anyone permanent, so I am going to inform the “temp” when she calls me that until she finds someone permanent, I am not interested. I cannot sit with a temporary person and build anything with them. That’s not how I operate. It’s an absolute waste of time. I’d rather talk to Cat and Kitten, both of whom pretty much ignore me these days unless the treat bag shakes or they hear me in the kitchen and think food might be involved. I could leave for six months, they wouldn’t notice, so long as they were fed twice a day.

I don’t think anyone cares to notice how unsupportive they are being. If you’re a shiny, happy person, you want to surround yourself with others like you. You don’t want to delve into the darkness and look deeply at someone with depth. That’s fine. I am better off without your bullshit. What you send out into the world comes back to you threefold. I listen to people and I give with my whole heart. I care, even when no one else bothers to do so. Faced with something that cannot be cured or fixed in any way, I am able to fully see how cruel and hateful people really are. And I am closing ranks in terms of my friendships and the people I consider to be anything in my life at this moment. I cannot imagine not reaching out to someone and offering support, but as I have noticed, people truly DO live on their own planets. I am walking around with the pin from everyone’s hand grenade. They just don’t know it yet.

1441225_10151700213961246_429352176_n

For the record: I’m not stupid, or blind. I noticed the drop in subscribers the second I was super honest in my last few posts. When am I NOT honest? I’m not going to apologize to ANYONE because there IS a trigger warning for those who cannot handle anything too deep. I get it; we all have our issues, which is precisely why there was a warning. If you see a trigger warning, STOP READING. Come back when I’m discussing something funny and lighthearted. In all fairness, it was the first time I’d ever used a trigger warning in four years, so please, give me a break. This is MY safe space and I am going to be as honest as necessary here. You can stick with me or you can unfollow or unsubscribe. I’m not going to chase you down the street. I’m not desperate. I know who my readers are.

For every two people that disappear, twenty more show up and thank me for being honest and sharing my story so that they don’t feel ashamed in sharing theirs. I have received more love from Twitter followers than from any other social media platform I use.

I’m going to keep being me. I’m going to keep advocating to the best of my ability for change and I am going to keep speaking my truth and telling my story. I’m not going to allow others to stigmatize my pain or what I have been through. You can read my work, but ultimately, you don’t know me. You know a small percentage of what I share, but the people who’ve been with me for years and years, those are the people who know just how real I am. The people who’ve met me and spent time with me know who I am. The people who text me daily know who I am. The people who can call me at three a.m. for anything know who I am. The select few who get to share certain aspects of my life are the people who have made an effort to be a real friend to me, and for that, I’ll always be grateful.

You can sit and judge me ’til kingdom come for being honest, but the fact of the matter is, you have NO fucking idea what it takes for me to get out of bed each day, so please, judge yourself first. No matter what I face, you’re probably not as strong as me. I’m not ashamed of my reality, and I won’t allow anyone to make me feel bad for things outside of my control.

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