Someone wrote this with me in mind, or at least, that’s how it feels today.
Someone wrote this with me in mind, or at least, that’s how it feels today.
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.
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.
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.
***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.
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.
**Potential trigger warning**
“Exigo a me non ut optimis par sim, sed ut malis melior – I require myself not to be equal to the best, but to be better than the bad.”
I think my doctor is a compatible astrological sign and/or is perhaps magically able to defuse angry women. I realize sometimes it’s a little like talking to a cornered animal or a small child, except when it’s me, because I can’t be likened to either. I’m more like a venomous tornado; if tornados could have that additional level of power.
I genuinely give him credit because he handled my appointment with grace, class, ease, and owned his mistake. I can count on one hand how many doctors I know who would have owned up to a major error. He’s maybe one of three, if that. He is in the teeny, tiny minority because he has managed to maintain his humanity, sense of humor (I’m pretty certain his sense of humor is one of the reasons I like him so much. I can genuinely appreciate someone who has the ability to match my level of sarcasm, snark, and wit. It’s rare.), and the ability to stay grounded. I hope he never changes, because it would be a damn shame. I walked in enraged, and walked out laughing. I’m not that moody, not even for a Scorpio, but again, refer to my opening line.
I spoke, he listened, and we discussed possibilities for me to meet with someone who fits the criteria of what I need moving forward. He could have blown me off; instead he tried to problem-solve, and that is going above and beyond in my eyes. A far more jaded doctor would have passed me off to someone else, simply for being honest. God forbid you point out to another human-being that there’s a flaw in the system, or that they, themselves, are not perfect. Denial is not just a river in Egypt for some.
I’m proud of myself for handling this without reverting back to the old, angry version of myself who definitely would have handled things in a much more brusque manner, and brusque is soft considering it isn’t my original choice of words. Despite being angry, I was calmer than I thought I’d be once I sat down. I know the initial look on my face was anything but cute, but that frosty demeanor is my usual, unapproachable “Don’t fuck with me” look. I have scared postal workers with that expression; I know it’s not a good face. My doctor, all credit to him, seemed concerned, but unphased. He knew something was wrong, he just didn’t know what it was. Once he heard me out, everything was okay. In no way, shape, or form was he pacifying me, nor did he come off patronizing. I know the difference, and I would have walked out if he’d tried it. He’s too smart for that level of nonsense, and he earned another layer of my respect for keeping things real.
I know a lot of people would not have gone back. Many would not have been able to go back and be honest with him, but I’m no ordinary patient. I believe in full disclosure, even if I keep certain things private and keep pieces of myself to myself. I still don’t believe in accepting bullshit from anyone and eating it politely with a knife and fork. That’s not my style, nor will it ever be. I lack the ability to bite my tongue. I’d rather be honest and say what I’m feeling, as opposed to keeping it inside. That’s not healthy.
As I write this, it seems as though my ulcer is acting up once again, so I definitely don’t have time to hold any more stress or anger inside my body. I need healthy outlets, and writing has always been my first line of defense. It’s one of the clearest, most concise forms of communication. You don’t write as long as I’ve been writing if you don’t have something to say and have some serious talent to back up the words, otherwise, words are just that; words.
Did I feel better walking out of this appointment? A little. I’m glad I was myself and got the majority of the anger out of my system, but ultimately I still came away upset, just not at the doctor.
He admitted he wouldn’t have asked me certain questions if I’d looked more closed off. If I had looked like I had a wall up, he wouldn’t have dug so deep. Apparently my “packaging doesn’t match my pain”, his words, not mine. I do like him, so I let it slide, but that comment stayed with me for days and it’s going to bug me.
I immediately wanted to point out that just because a woman has makeup on, it doesn’t mean she’s an open book. Yes, I answered his questions. I did side-step a few, whether he noticed or not is another subject entirely, however, is wearing makeup what’s hindering me in getting proper care? It made me wonder if this has been an issue for the past ten years or so; the simple fact that I don’t walk into doctor’s appointments looking like death, which is usually how I feel on the inside. Do I need to walk in a drooling, incoherent mess? Is a face REALLY all people are paying attention to?! Is everything artifice? I do believe it’s called an “Invisible Illness” for a reason. Thirty minutes of my time, or less, to look human may seem ridiculous, but that time calms me down so I actually go to the damn appointment. Some doctors recommend coloring books to their patients as a form of therapy. Well, makeup is art therapy for me. It wasn’t even my best work, it was just mindless self-expression. Let’s not judge the broken, pretty mess by her “packaging”. Let’s not make assumptions. It sort of makes me want to show up in sunscreen and mascara next time, just to screw with him. However, that’s my “It’s over 90 degrees and I’m going to the grocery store in sunglasses” look. I try to look a little more human and pulled together when I’m face-to-face with someone. Not because I am trying to impress them, but because it’s something I do for me.
In hindsight, I realized that nearly all of my doctors, both past and present, are men, save two. I read a report about myself once that said I was “impeccably well-groomed” and it angered me. Obviously the doctor who wrote it has zero idea what it takes for me to be so “impeccably well-groomed”. I have an appointment in August, but I’m not about to ask another woman how she feels about my eye shadow blending skills. <rolls eyes> The first time I was there, the nurse went on and on about how good I smelled. That’s such a girl thing because my friends do it all the time with me. Women notice things that men do not. Men are more visual, but I don’t wear makeup for men; I wear it for me.
In my dealings with my beauty blog, I have sponsors, so I’m occasionally paid to write honest, unbiased reviews and I’m constantly trying new products revolving around hair, nails, skin, and makeup. It’s something I do for fun, something I hope will one day become more. However, the pain I experience has already held me back these past few years in terms of expansion, of starting a YouTube channel, and branching out. I re-branded last year, but my confidence levels are nonexistent, so if I’m not comfortable posting a photo of completed work to Instagram, then I’m definitely not ready for a camera in my face 3-4 days a week when I need to be filming.
Despite support from friends and family that I am definitely skilled enough to do it, I don’t feel ready. But does that mean I should be taken less seriously when seeking medical help? NO. Don’t judge a book by its cover. Or in my case, its skill-set. That’s not even 1/100th of what I can do in this world, and by judging me for it, you’re taking me down to less than a millimeter. That’s an unacceptable thought process. I personally know some of the most stunning people who are suffering just as badly as I am, and if you didn’t know them, you wouldn’t know what is going on because they have trained themselves to fake smiles and laughter. I will never fake a smile, not will I fake laughter or any other emotion, but yes, I will use an art form. I assure you, it’s not a mask, it’s just product.
After my appointment someone asked how I was feeling mentally, and I said “Let’s face it; I’ll never be okay. This is not fixable. Maybe if someone had done something to help me when I was six, or seven, or eight, I’d be okay now, but they didn’t. I feel neglected. I feel like my life isn’t my own. No one should have to carry this pain with them, this knowledge, and have to keep on living.” I then realized I’m deeply upset, and there’s no fixing it. I could go to a hundred doctors and there’s no cure in sight. I don’t know if there ever will be. There are always new medications in the pipeline, but a cure? No one ever talks about that, do they?
Ultimately, I am who I am; imperfect, shattered, hilarious, loyal, honest, goofy, inappropriate, sharp, creative, determined, the family protector, a permanently exhausted night owl, incredibly direct, a girl’s girl to the core, the person everyone turns to in a crisis or for advice, the girl “most likely to take a bullet for you”, the person described as “part lawyer/part doctor/part pitbull”, the psychic/spiritual guru for friends and for many of my close family members, mother to Cat and Kitten, a kickass Godmother, a truly amazing sister, an introverted extrovert, the girl who’ll sing anywhere because she hates wasting her voice training, the very best friend anyone could ever have, and the last of the matriarchal cooks in my family. I wear so many hats and own so many titles. That’s my “normal”.
In all the positivity, there is also a lot of fucking pain. You can’t mask that. No one sells “You’ve been through hell” concealer (I’m trademarking that, so don’t get any cute ideas.), or everyone in this world who suffers from an invisible illness of any kind would be stocking up. I look in my own eyes and see it. They may look sparkly and green in the right light, to the right person, but to me, that’s predominantly a sign of intellect and personality, nothing more. I have a dark, twisted sense of humor. People either enjoy it or they stare at me and say “I don’t get it.”, which usually results in the response “Bless your heart.”, mostly because I don’t have time to explain it to someone if it goes over their head. I’m quick-witted and even quicker with my sarcasm. You either get it or you don’t, but it’s not intended to be offensive, unless my tone changes or I intentionally speak a different language in
front of you.
Suffering from depression isn’t just abysmal highs and lows. For me, it’s living in pure darkness and trying to find shards of light scattered here and there. Light comes in many forms for a creative type. I love learning how movies are made. I am fascinated by certain aspects of history. Certain artists intrigue the hell out of me, and they remind me I should be painting twice a month. I actively study parts of the world that most people will never see in person. I learn new languages. I have traced my ancestry back to 85 B.C., which was no easy feat, and I’ve researched cats so thoroughly that you can ask me anything about domestic or big cats. I never stop learning. And yet, I openly and honestly discuss suicide in the same breath. I don’t believe in hiding it. I don’t believe in masking the pain or lying. I’m not going to sweep it under the rug and pretend. Pretending is what gets you into trouble.
Last month, one of my cousins tried committing suicide via overdose. It deeply affected her oldest daughter and other family members; justifiably so. While they are all taking it personally and questioning the kind of person she is, offended that she lied to them or simply didn’t disclose how badly she was suffering, I’m the one person who seems to truly understand how much pain she is in to have hit rock bottom. I know how awful it is, and I refuse to sit in judgment of her for it. In fact, all I want to do is help her. I’m sick of their attitudes. They’re acting like it’s all about them when the truth is; her pain has NOTHING to do with them and EVERYTHING to do with being strong for decades and finally breaking down. I didn’t realize how deeply it affected me until I broke down in the shower one day. I am deeply concerned, especially now that she is back in the hospital and continually tries to manipulate doctors, friends, and family into letting her out. This is the person in the family who would personally kill any of us if we tried to do something as stupid as what she did, so I KNOW this isn’t her, this is merely illness and an extremely dark, low point. What they deem as selfish, I see as a diamond in a pressure cooker. That’s precisely how a doctor once described my own situation to me. I try to remember those words whenever I reach my breaking point, but it’s not easy to hold on to mere words when your support system is nonexistent.
I spend 97% of my time alone, in pain, so how could I not think about suicide? Between the stress and the isolation, it’s hard not to. and I refuse to lie or pretend. I’m not good at being fake.
There are days when I’m taking a long walk, just to clear my head, and there’s this little voice hoping I get hit by a truck or a bus, or a car not paying attention. Unfortunately with my luck, I’d be in a body cast and no one would ever think anything except that the driver was an idiot who didn’t see me. No one would ever think I had anything to do with it, and for the most part, I likely wouldn’t be thinking about it either because I have “city brain” and I’m very careful when I’m walking, but there have definitely been moments where I’ve nearly been hit because a driver wasn’t paying attention and each time, a large part of me was sad they stopped or that I was paying attention. It’s sad to admit, but it’s also honest, and human. I despise my life and almost everything in it. I find it pointless to pretend that it’s okay. I am 1000% NOT okay. I cannot remember a time when I was okay. Passable? Yes. But okay? No. Hell, I don’t even know what okay looks like or feels like. When people ask how I’m doing, I don’t lie and say I’m okay when I’m not. You know how cashiers and customer service reps often ask how you’re doing? My new response is “I’m too honest for that question.” I don’t play the game and say “I’m good.” or “I’m okay.” because lying is not my first instinct, and when people lie to my face, I look them in the eye and say “Do you want to try that again?”
As I constantly have to explain to other people, my ties in life are different from theirs. My Grandparents are gone. My parents are gone. I have a handful of cousins I am close to, and in truth, I don’t feel like I can discuss my life with them because they’re so wrapped up in their own lives (quite frankly, it’s ALL I hear about. Sometimes they talk at me, and don’t even ask how I’m doing. This can go on for months at a time.). I recently lost my Great-Aunt, who was the last tie I had to my father’s side of the family in this country, aside from my cousins (her grandchildren) who I am currently trying to tune-out because they’re stressing me out with every phone call or text message. I haven’t heard from my brother in months and constantly live in fear that I will get a phone call from a hospital, the police, or the country coroner’s office. I come out of my skin every single time my phone rings and I don’t know who the caller is. Every day of my life, I question my existence. Between migraines, the physical pain, and the emotional pain, there doesn’t seem to be much of a point in sticking around. Why would any sane person allow themselves to go through this kind of torture day in and day out?! Suffering to this extent is inhuman. I wouldn’t allow Cat or Kitten to suffer like this, so why am I allowing myself to live in such a manner?
I used to stop myself from acting on these thoughts because I was afraid my brother would be the one who found me, and I couldn’t do that to him. His best friend committed suicide in 2005 and it left him devastated. I didn’t want him to find his sister dead; I was certain it would break him. Especially after we lost our parents. My brother isn’t me; he’s not the strong sibling, nor will he ever be. One of my best friends lost her brother to suicide, something none of us could ever have anticipated, and she has told me that no matter what I am going through, it’s a permanent solution to problems that are “temporary”. However, you can’t say that to someone who has spent the majority of their life in agony and who rarely, if ever, knows happiness.
Nothing I’m going through is temporary. It is all quite permanent and very real. I don’t think my other friends are aware how much I’m hurting, nor has anyone ever inquired. I’ve only recently realized how one-sided our conversations are. I support and strengthen them, but who supports and strengthens me? My relationships and friendships are solid, but I will always be the black sheep. I’m needed when I’m needed, but where do I go when I’m in need? To a doctor and/or a licensed therapist, and right now, I’m not okay to sit with a therapist weekly, or even bi-weekly. I am gutted, and I don’t have the emotional capacity to sit and discuss anything when I feel like an empty shell. I don’t like wasting someone else’s time, nor my own. My last two therapists dropped out of my life during really awful periods when I most needed support. The last one disappeared completely during one of the worst times in my life. I genuinely trusted her. I’m not ready to be hurt like that again, nor will I allow it. She was the only therapist I’d ever liked, and her not so much as returning a call or referring me to someone else was incredibly unprofessional and rude. It’s something I’ll never forget or forgive. There is always a professional way to do something. It’s one of the first things I learned in business, and I was eight years old at the time! I cannot forgive stupidity when I know that the other person knows better.
So my appointment went well, and I’m glad for that. I genuinely DO like this doctor. I wasn’t kidding about following him to China. That’s one of the highest compliments I can pay him. I’m certain he knows it was genuine. He will be lucky if I don’t super glue myself to his leg at my last appointment, and for some reason the image of that in my head is hysterical beyond words. Oh, Lord, RELAX! I’m joking. Sort of.
He’ll be getting one hell of an online review when I get a moment to collect my thoughts. Not because I have to write one, but because he deserves it. I’ve never written a review for a doctor before. I’ve recommended my former neurologist to people in need (He is genuinely a kind, caring doctor who did his best for me.), but this is different. I want him to have an amazing review moving forward on every website I can slap one on, and I’m just insane (and sane) enough to get one posted everywhere known to man. I don’t actually know anyone who could write something better, and that isn’t ego talking, it’s mere fact.
For obvious reasons, I have protected his name this entire time. As I’ve said before, many times, “privacy is not a setting”. I adhere to laws and boundaries, even if some of them are personally defined. After all, this is still the Internet and while I do talk about a lot of things openly and honestly, I’m also an incredibly private person.
Even when he stops being my physician, I’m still going to feel protective of him; I discovered this accidentally. A family member made some outrageously derogatory remarks to me about him while I was in the process of writing this, and I’d never felt more defensive and protective of a doctor in my entire life. You would have thought she’d taken a shot at my mother, which is one thing that, to this day, is very likely to get you punched in the fucking face. Thus far, no one has deigned to do it to my face. One person made the mistake of doing it via e-mail, and I decided it was an act of pure cowardice not worthy of a response. People know that if they did it to my face, I’d kill them and tell God it was an accident.
My reaction to this family members’ truly insane comments regarding my doctor were to take a deep breath and pause before saying “Did she actually just say that to me and think I’d accept it?” However, she had, and my exact words were “I’m a very good judge of character and unlike you, I trust my judgment and intuition. Number two, this is someone you have never met, spoken to, or spent five minutes in a room with.” I was SO angry, she’s damn lucky she was in another state, or there’s simply no telling the level of fight it would have escalated to.
The following day, she casually contacted me like nothing was wrong, and I informed her that it was incredibly disrespectful and inappropriate for her to take a shot at my doctor and attack a stranger based on her personal experience of working in a hospital. You can’t go around assuming that every doctor is egotistical and arrogant. Far more was said than just that, and I refuse to give the insanity credence by repeating it. However, nothing I said was negative or led her into this series of hateful, rude, callous, inappropriate, man-hating remarks. She knows less than nothing, so it came completely out of left field and I was NOT having it. She did end up apologizing to me for her outburst, calling it an “occupational hazard” from watching the behavior of the doctors who work at her hospital, but that’s a blanket, bullshit excuse and she knows it’s completely unacceptable to me. I’d love to chalk it up to her usual idiocy, but much like attacking my work, which I’d never allow anyone to do, you do NOT attack this doctor. I may have been mad at him for an isolated incident which she doesn’t know about, but I did not disclose anything more than facts when I wrote about it, and she doesn’t read anything I write. This is someone I respect. That means he’s done something to earn it.
When you find a good doctor, however brief the encounter may be, it’s important to let them know which qualities they possess that they need to hold on to in order to survive as medical professionals. They might lose sight of that from time to time, so a solid reminder will remain in the back of their minds. Like anything else in life, there are always things that bring us back to the here and now and remind us of who we are during challenging times. No matter who we are or what we do for a living; we all have those moments. No one is perfect.
It’s a sad jungle out there. Finding someone amazing who cares and genuinely wants to help people, and isn’t egotistical, is very similar to finding a unicorn. Apparently, they DO exist in the medical community if you search hard enough. There’s an immense difference between having a healthy ego and having a Donald Trump complex.
In one of the most screwed up healthcare systems in the world, anyone that becomes a medical doctor in the United States has just completed four years of medical school and, depending on their chosen field, there is a 3-7 year residency or fellowship process after graduation. It puts the average physician over $175,000 in debt, if not more. Yes, they are choosing to become doctors, and no, most of them don’t go around earning our respect as patients for many reasons. One of which is insurance companies dictating far more than they should be allowed to. This has been going on for years, though. It is NOT all related to the ACA. However, there are still so many good doctors out there. Bedside manner isn’t a given. It is often learned, and so much more is learned by taking time out for your patients. In their efforts to help people, they can become doctors that focus solely on research or they can practice medicine based on their field choice in the state(s) in which they are licensed.
What makes this doctor stand out from all the rest? He’s fully engaged. He’s not distracted, dismissive, or daydreaming while you’re talking. He is 100% in the room. He’s not only listening, he hears you. Given the chance; he never would have given up on me. He’s simply too determined. You can fix broken bones, and I am using that as an emotional metaphor. Emotional bruises heal, eventually. But a doctor not giving a damn whether you make it or not? That stays with you forever. I know, because I’ve lived through a plethora of doctors who didn’t give a rat’s ass about anything, least of all me. I was never a person or a patient. They couldn’t be so bothered to return a phone call, or do anything other than rush me in and out of their office. They had no intention of ever helping or making a difference, but if you’re not an experienced patient, you don’t know the signs of what separates a doctor from being a licensed physician to someone who has greatness in them. I’m well-versed, so I do know the difference.
I lucked out. I found the needle in the haystack on my first try here in Massachusetts, but he is leaving, and I’m all out of super glue. I am glad our paths crossed. I think I’m a better person for it. Broken, pretty mess and all.
Yes, he knows I’m a writer and that I wrote the angry piece. I was incredibly honest with him. I will not be so forthcoming with the next doctor, or any others, up the road. Trust is something you earn, and I cannot give of myself again. He is getting a copy of the first piece, and this one, at my last appointment. He’ll probably never know how much his ability to care and treat me like a human-being undid damage every other doctor did along the way. All I can offer is my respect, appreciation, and heartfelt thanks.
Aut viam inveniam aut faciam-“I shall either find a way or make one.”
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
“I am a migraine, that occasionally gets to be a human-being.” 😦
In preparation to meet with my new neurologist next month, I forwarded a copy of my current migraine report to myself so I can print it and bring it with me. In one month, which was recent, I counted thirty migraine days. That’s not just “chronic”; that’s unfair. No one should have to live like that.
When people see me pushing through my migraines by continuing to write, by going places (which isn’t often), by running errands, etc., they assume I’m okay. I’m NOT okay, but I have learned, in the nearly twenty years I’ve suffered from migraines, when I can push myself and when I cannot. I pay dearly for it, but I also think sometimes it’s unhealthy to be in your room 24/7, never leaving the house, never breathing fresh air, because while you’re suffering, life is also passing you by. I’ve lost an enormous chunk of my life being sick, and not just with migraines. It’s hard not to feel robbed at times.
At a doctor’s appointment at the end of last month, I stupidly felt incredibly trusting of my new physician. In the last six or seven minutes, he revealed he’d be leaving in six weeks. I’ve never seen a doctor wince when he looked at me, but whatever my eyes or face did in that moment, and I’m truly not sure what either of them did because I tried to play it off with humor, I can say that I’ve had cheating boyfriends not look at me with that kind of pain on their face.
When I left his office that day, I sat outside for over forty-five minutes contemplating the effort it took for me to get there in the first place. Physically, mentally, and emotionally; it was a LOT. The strength it took to open up and be comfortable with someone new was monumental. If I didn’t truly need to be there, I wouldn’t have been. But that’s the thing; I did feel comfortable. I’ve never walked into a situation completely at ease with the other person. Perhaps that’s why I felt the way I did walking out.
As I went over my thoughts, I also went through every emotional range you could think of. I nearly went back upstairs and told him off, except I actually like him, which is SO rare; I’d follow him to China, and I’m completely in my comfort zone admitting that to all of you.
I NEVER like doctors immediately. I tolerate them, but I never actually like them or invest anything other than civility into them. When you’ve been burned a lot, you learn precisely how to carefully guard yourself, and with doctors, I simply don’t have a whole lot of trust to give. I’ve had too many fail me personally.
I understand that doctors have contracts and non-compete clauses, and can’t always take patients with them, but I have no intention of staying with this practice if I’m not going to be understood by the person who “replaces” him, as if that can be done. What’s the point? If I’m not going to be treated with the same level of courtesy, kindness, and respect; I’m out. I don’t have to stick around if I’m not getting what I need out of the situation. I simply don’t need the bullshit.
I am going into my next appointment pretty fucking angry. It’s SO unprofessional to still be seeing new patients 6-8 weeks before you leave. I know that wasn’t his call, so technically I am not blaming him, but I still have the right to deem it unprofessional and be pissed.
When I spoke with him to let him know that the medication he’d prescribed had some adverse side effects which I can’t tolerate, it just plain made me sad to listen to our conversation because we have this great rapport, which is rare for me to have with someone immediately. I’ve searched FOREVER for a doctor that “gets it” and ultimately, gets me.
I haven’t felt right since leaving that first appointment. Not mentally, not emotionally, and physically, I’ve felt weakened and messy in the sense that I am slowed down from a physical perspective. It was like taking an emotionally draining beating, except the only physical interaction was a handshake. When was the last time a doctor said it was a pleasure meeting me? A long time. I’m starting to think psychiatrists think I’m an interesting case-study.
I’m both too young, and too old, not to mention far too smart, to place faith in people and be left hanging again and again.
The relationship between doctor and patient is based on trust. If you cannot trust someone, then they cannot be your doctor. There are certain types of medicine where this is even more crucial because you have to communicate with your doctor on a regular basis. If you don’t feel you can be open and honest, it won’t work.
Consistency with the person you’re seeing is important, at least it is for me. I don’t want to build trust with someone and have to start over again with someone new. I’ve done it so many times already and I don’t want to do it again. This, in my mind, was the last time I’d planned on making an effort. I went into this new situation kicking and screaming. I tried talking myself out of the appointment the morning of, so clearly, I already sensed all was not right in Whoville. I don’t know if there are still pieces of me left at ground zero, but I DO know I walked away a different person.
When he asked me to describe myself, I noticed that he disagreed with my assessment. He doesn’t think I’m a broken, pretty mess. He actually said “I can’t put you in a box because you don’t fit in any of the tiny boxes. I could, but it would be wrong, and that’s not fair to you.” I can’t tell you how long I’ve waited to hear a doctor say that to me, but it’s been the majority of my life. Someone else would check off as many of the boxes as they could, add on diagnosis codes ‘til they’re blue in the face, and send me on my way instead of taking the time to truly help me. He not only wants to help me; he’s making an effort. But in doing so, he’s upsetting me because he won’t be there much longer, and ultimately, where the hell does that leave me? Letting me know I’ll be getting a new doctor and a therapist did not leave me reassured; it only pissed me off.
Square one is not a fun place to be. I was already at square one when I showed up in his office. I kept my appointment, I filled out the insane paperwork in the biggest rush known to man (I had a fucking field day with the race/ancestry pages. I didn’t know we’d be doing that, but hey, they asked the RIGHT GIRL. I’m pretty sure I missed a few countries my family has ties to. I love how my paperwork says White/Caucasian because the office determined that by my skin tone. I may have some European ancestry, but I checked off Other on the forms.), I sat with him for nearly an hour, and I haven’t been okay since. I walked out feeling like an idiot for showing up.
When I see him next week, I am not entirely certain what I’ll say. That’s why I’m writing it out of my system. I need the catharsis, and he needs to know that by seeing me late in the game and not immediately disclosing his role in things, it was a gross error in judgment. If I needed someone to care about me temporarily, well, I’ve got family for that. Quite frankly, I’m at the point where I prefer for my insurance to pay for people to care about me, as opposed to dealing with people who should care simply because it’s what you do. I am the polar opposite of the majority of my relatives, and while I am grateful I was raised right, it can be lonely to be the standout.
The one diagnosis I did come away with was shocking, at least for me. I knew I was experiencing PTSD. I’m much smarter than I let on, and this was probably the second doctor’s appointment this year where I dumbed myself down on some level, but ultimately C-PTSD, or Complex PTSD, is more common in military personnel returning from active combat. It is also prevalent in veterans. Anyone can be diagnosed with this, though. Trauma is trauma, there’s no getting around it. The discussion we had about trauma itself brought up a lot of things I thought I’d moved past and dealt with. This is precisely why I’ve felt worse since meeting with him. He picked at all of my old scars and opened them up with surgical precision. A therapist normally does that slowly, over time. Instead, he removed the sutures that keep me together without knowing it, and I’m slowly bleeding to death. It’s messing with my ability to function. Quite frankly, I’m surprised sharks haven’t found me and vultures haven’t picked my bones clean.
I’ve been unable to do a whole lot since that day. There have been days where I’ve barely been able to get out of bed or articulate how upset I am. I’m incredibly self-contained most of the time because I’m very much inside my own head, so if you get me talking, I don’t always stop. On the plus side, no one disagrees with my thought process in terms of how I feel on this subject. I will be about 75-90% less forthcoming with a new doctor because I already feel like my trust is shattered. But the truth is, it’s not just shattered, it’s broken. It’s an awful feeling. And yes, I pretty much have it in my mind that once he leaves, I will, too. I don’t foresee myself committing to someone new, not unless they make a damned good case in twenty minutes or less. I do not have time for another doctor to attempt to earn my trust. It’s gone.
Ultimately, there aren’t a lot of medication options left for me, and unless you’re on medication, I don’t feel you actively need to be seeing specific types of doctors. I wouldn’t go to see a surgeon unless another doctor believed I might need to have surgery, or I needed a consult, or I was recovering from surgery. It’s all very common-sense based in my eyes. Either you need to be seeing someone, or you don’t. I certainly don’t want to waste my time if a doctor isn’t going to be there for me. That’s not how the relationship works. I would rather invest more time with my doctor, someone who is fully engaged, than with someone who could, for all I know, be playing Candy Crush Saga on the other side of the room, but tell me they’re “taking notes” on their phone.
I keep saying “I don’t have time for this.”, because I don’t. Life is so fucking short. Your support systems, from personal to professional to medical, all need to be in sync with who you are as a person and what you need. If they’re not, then you have to be honest with them. If you still don’t get what you need through that honesty, then yes, you must walk away. And sadly, you have to be okay in doing so. No matter how painful it is.
He may not agree with me, but I know what a broken, pretty mess looks and feels like. I may have walked into his office like I was going on a date (That wasn’t my intent.), but that’s usually how I go to doctor’s appointments. Someone told me last night that my face masks all of the pain I am in. I asked if that made me fake, and they said no, it’s just a point of pride for me. I feel like crap, but I don’t have to look like crap, too. So yes, I put forth effort into looking like a human-being, but by no means is it a “mask”. It’s not false, it’s just art work. On my face.
A good doctor usually talks to me like a peer or colleague almost immediately, which he did. Technically, he and I ARE peers. I enjoy people who treat me like a person. They’re rare, but they exist, and it makes it easier to deal with someone when they don’t have a superiority complex. He made me feel like I was talking to a friend the entire time, someone I’d known for years. That’s incredibly rare.
A huge part of me doesn’t want to go back, but I said I would, and I’m dreading having opened my mouth. I keep saying I don’t want to go. I genuinely don’t. I spend enough time being angry, and I don’t want to walk out of there angrier than I already am.
I know he said he’d “do his homework” when we talked because he “really wants to help me”, but I’m sitting here wondering precisely where this appointment will take me, and who the hell I’ll be dealing with once he leaves, and whether or not it’s worth my time. I’m tired of leaving doctor’s appointments dejected. This one was no different.
I texted a close friend immediately afterward and said “Psych eval went great. Love the new doctor…but he’s leaving in six weeks.” and her reply was “What.The.FUCK! That’s not right! Nor is it fair to you. I’m so sorry, Li.” She knows I NEVER say I like or love a doctor, EVER, so at first she was happy for me, until she read the rest of what I said. I texted a second friend when I got home and she basically said the same thing. My friends were outraged. They knew how long I’d waited for this appointment and how much I’ve been through waiting for help in this Godforsaken state (It’s like living on another planet where they sort of speak the same language, but think I “talk funny”. I believe it’s called ‘enunciation’.). One person after another was shocked, but thankfully, all supportive of me. That helped me get through any doubts I had about whether or not to say something. As if I’ve ever needed my friends to tell me to be myself or to hold back.
I’m the one who has encouraged them to get help when they have needed it, and one friend in particular was in pretty bad shape before I stepped in and forced her to seek out therapy and medication. She’s not happier for having done it, but at least now, she’s on a path, and that is a positive thing. My honesty and experience helped someone else get the help they needed, and they were able to walk in with some knowledge instead of going into the situation uneducated. If my pain can help others navigate dark waters, that’s great. I’ll hold your hand through the bad times and stick with you through the good. However, I’m standing here on a ledge, wondering what the hell I’m going to do. In fact, I’m pretty sure I’ve already drowned and this is all a nightmare, or a hallucination.
I’ve done all of this before, more times than I care to count. This insanity began at a very young age for me. Every single doctor and therapist has, at one point or another, walked away. I have walked away from those who’ve had zero intention of helping me and many who were some of the most burnt out, unpleasant people I’ve ever spent time with, and let’s not discuss how negative their energy was. There was one doctor who I nearly threw out of a third story window because she was one of the most vile people I’d ever met; caring only to write prescriptions, but barely looking up at you and seeing you as a person or a patient. The first doctor I ever encountered threatened to hospitalize me less than ten minutes into meeting me because he “didn’t like my attitude”. He tried to turn me against my mother and when I told her about it, she informed him that I’d no longer be seeing him. He had the gall to call the house and demand to know why I didn’t show up for my appointment, playing the role of the injured party to attempt to manipulate her into bringing me back. My mother didn’t often lose her temper on people, but she did tell him off, and she supported my decision not to return to someone who, behind closed doors, was treating me differently than when she was in the room. He had no intention of ever helping me, or understanding precisely what the issues were. I was a product of my environment at the time and he was trying to abuse his authority. I know he thought he had the ability to brainwash me, but he underestimated my sense of self, and that’s where he failed. No matter what someone tries to spew at me, I know who I am.
So here I am all these years later; I finally meet someone with positive energy, a good attitude, and a healthy mind-set, someone who isn’t looking to shove drugs down my throat, and naturally that person would be leaving. Honestly, why don’t you just shoot me?!
Maybe I’m on a short list of people in this world that likes consistency in their physicians, but I not only like it, I need to know who the hell I am dealing with. I don’t have time for games, nor do I care to be passed around from one doctor to the next like a game of ping-pong. The last time I checked, I was still a human-being. In a vampire-esque sort of way. With the occasional use of a daylight ring (Huge points to anyone who understands those references.).
Just as I need consistency, I am consistent. I apologize in advance to the doctor that’s about to meet the polar opposite of who he first met, but sometimes, the bitch card comes out. If you really want to help me, do right by me. I wasn’t kidding when I said I don’t have time for this. No one can get better when they’re being jerked around.
How much damage can I do in twenty minutes? I’m about to find out.
copyright 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.