Doctors

Incurable

Miss Poison Writing , , , , , , , , , , , , , , , ,

                                            ***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.

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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.

Doctor & Patient: The Follow-Up

Miss Poison Poison In Lethal Doses, Writing , , , , , , ,

**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.

Scheduling Conflicts

Miss Poison Writing , , , , , , , , ,

When you suffer from any form of chronic illness, you can choose, or not choose, to see your life as a bunch of doctor’s appointments. I try not to, but lately…

Without insurance, I didn’t have to think about it. I only went when I had no other choice, and there are doctors I’m still paying off for the few emergencies/scares I did have. With insurance, I’m in high demand. It’s almost laughable. You get told how long the wait will be, only to have someone call and say “The doctor can see you tomorrow at three.” Good for the doctor, but I can’t make it because you didn’t even ask if I was available! It’s like having to turn down dates you’re not enthused about.

Tomorrow afternoon I have an appointment in Boston that I hope goes well. My conformation call is supposed to come in tonight. I still have lab work I’ve got to get done ASAP, an appointment to reschedule once the lab work comes back, and an appointment at the end of next month to “look forward to”. I have to call the neurologist’s office back, seeing as how I missed their call earlier today.

Going into appointments with new doctors is basically a meeting. You give a rundown of your medical history and then they give you their feedback. I’m not even certain I want anyone’s feedback at the moment, but sadly, I need it. Even though they will, in all likelihood, go over any notes from my previous doctors, they’re each going to make their own assessments. My new doctor said “Let’s start at square one and find out what’s wrong.” She even said “We’ll figure this out together.” I was speechless, because up until this point, I’ve received a lot of dismissal from the medical community.

I’ve done the guinea pig stage and I’d like to not return to it, and yet, I’ve agreed to lab work and will soon have to agree to a gamut of tests. MRIs, cat scans, x-rays, and G-d only knows what else some of these doctors will come up with. I honestly just want to write out a document about what I will and won’t agree to; “Here are my medical hard and soft limits.” (I’m being sarcastic.) However, I do feel like I’m agreeing to an alien probe. 😦

When my new primary care physician’s office did intake they asked me for an emergency contact. I responded that I don’t have one. It makes me sad, but it’s the truth. Yes, there are a few people I could ask, but I don’t trust them. I don’t actually trust anyone, except myself. Not when it pertains to medical decisions. In a worst case scenario, I’m pretty sure most of my family would pull the plug and then disappear to make sure no one ended up responsible for my funeral expenses. I’ve seen this happen in other families. A close family friend passed away. It took days for someone to find her, which is truly heartbreaking to me. Her cousin, with whom she was close to, identified her, but after that, the extremely rich family she came from wanted no part in arranging, or paying, for her funeral. The Jewish community stepped up and made sure she was given a proper service. It was the saddest thing I’d ever heard, and I’ve probably heard it all.

In my defense, I’ve decided to establish a living will and submit it to the local courthouse and each of my physicians. I can’t have people thinking they can make decisions for me when they would never be able to tell someone what my eye color is, or my blood type. It’s difficult, knowing I can’t really turn to anyone about this. My cousin did offer, but honestly, I do not think she is capable of making informed decisions on my behalf. She’s a wonderful person, but when it comes to things like this, you have to be able to act swiftly in the best interest of the other person. She isn’t capable of doing that, so why burden her?

I’ve been experiencing blackouts more and more these past few weeks. Getting over being sick (according to my doctor, the infections are gone and my lungs are good, but it’ll be a while until the cough fully goes away, I can no longer blame it on being sick or being exhausted, or the side effects of my medication; this is happening, this is real, and this is scary. I haven’t talked about it with anyone, not really. I’ve talked it with all of you. When I did tell someone about it and tried explaining that 2-6 hours of my life are simply erased most days, they started spouting off potential reasons for it, but there was no care or concern conveyed to me. I’d prefer to hear the neurologist tell me what they are, or aren’t. In fact, I just Googled their office and I’m very impressed by what their specialties are. They do most of the tests on-site, which is such a relief.

Navigating this shit alone is tough. It’s emotionally painful, but I have no choice. And I’m strong enough to deal with what the doctors have to say, even if I’m conflicted about certain things.

Overall, not being able to concentrate today on my novel-in-progress is upsetting. I decided that maybe I needed a break. After all, not many people reach the 600 page mark on a re-write. I should be proud of myself, but I’m not. I sit here, and I wonder “What the hell are you even doing?” and “Why do you bother?” Writing projects this big are, on occasion, mentally and emotionally overwhelming. If I trusted someone enough to talk about what my issues are, that would be great, but I don’t. So today, I feel stalled. I’m going to let it be, because what other choice do I really have?

Tomorrow is another day, and hopefully when I get home tomorrow night, I’ll have fresh material in my head and be able to add a few thousand words to my already insane word count.

In the meantime, I’m scheduled, conflicted, stressed, and would love a break.  I’ll get over it.

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

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A Broken, Pretty Mess

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When I came home Wednesday afternoon, after being at the doctor’s office for HOURS (You know your doctor is good when EVERYONE wants to see her.), I didn’t realize how awful I felt.

I remember coming inside, hanging up my coat, taking in the mail, feeding Cat and Kitten a little earlier than usual, changing my clothes, washing my face multiple times (Turns out, vegan mascara really likes my lashes and doesn’t want to come off. For the record, I have NO IDEA why I chose to wear a full face of makeup to a doctor’s appointment. I looked like I was going on a date, minus false lashes, which I can’t apply to save my life. It looked subtle and clean when I applied it that morning. It wasn’t really a “full face” by Kardashian standards, but when I got home it was the exact opposite of subtle and clean. I stared at the mirror and said “Holy shit! Is this how I left the house?!” It had that “bombshell” look to it and that’s not what I was going for, obviously. I was genuinely appalled with my own idiocy.), eating salad, and suddenly I felt overwhelmingly AWFUL. I was in bed at exactly 7:05 PM, only waking up to hydrate. I somehow had the audacity to sleep over eleven hours. No medication, no influence, just pure exhaustion mixed with physical pain.

I feel broken. I realized that when a different doctor called me to have a discussion about what my needs are moving forward (my first referral to someone else for specific reasons). I heard myself explaining the summarized version of what has occurred to make me feel the way I do and as I eventually heard myself speaking, I wanted to crawl into a hole and die. It felt incredibly sad, depressing, and honestly, the list could go on forever. It slammed down on me like a tornado coming out of nowhere. I caught myself, mid-conversation, thinking “This is what your life has been like. Holy crap! You need a hug.” But a hug isn’t what I truly want or need. I want to come away from something someday and feel healed. I’m tired of being a broken, pretty mess. I’m sick of it, because it feels like I’m somehow reduced into victim mentality, and I don’t like that feeling. No one does. For the doctor’s assistant to meet me for the first time and say “We’re here for you and we care.” was overwhelmingly emotional for me. I have family and friends who NEVER say that to me. And by never, I mean NEVER.

Do you know what it’s like to never hear a kind word spoken to or about you? I do. For longer than I care to admit, I have been reduced to being one of three things “Pretty.”, Talented.”, or “Smart.” Occasionally someone will say I’m all three, but generally I only hear the one, and that could be from anyone interacting with me on any given day. It could be a perfect stranger thinking they’re paying me a compliment, and maybe they are, but it leaves me feeling reduced to three boxes, and nothing else.

The people closest to me (my friends) would probably say much nicer things and would not reduce me into a trinity of superficiality. A friend recently told me I was “super-smart and had so much depth that most people never even realize it’s there because they don’t look”. I remember hanging up the phone after that conversation and thinking “I’m glad someone gets me.” It’s a short list.

I was at the vet one day and a guy complimented me on my skin. I wasn’t expecting it. It was one of those “Wait, what?” moments. You had to be there. He went into great detail as he explained that my skin is so flawless, he could tell I never go in the sun, that I don’t drink or smoke, that I take really good care of it, and that I’ve never had anything done on a plastic surgery level. All of those observations are correct, but I look in the mirror and I do NOT see flawless anything, I jokingly replied, “It’s all smoke and mirrors.”, but his compliment was quite genuine, and the back and forth went on for about twenty minutes. It was one of the nicest compliments I’ve gotten, but it was also an observation verbalized. I told him I was going to take him everywhere with me from now on because he’d made my day, but that’s precisely how I felt; I hadn’t heard a kind word or a compliment in so long, I would have listened to any compliment, however genuine or not, because it wasn’t negative. I don’t live my life for compliments of any kind, I just try not to be a piece of crap. I sent my cousin a photo about a month ago and she said the same thing “Holy shit, your skin is flawless. Are you wearing makeup?” There are some very lovely, sweet, blind people in this world. I am CLUELESS as to what they see.

Have you ever been in so much physical, mental, or emotional pain (possibly all three) and simply not seen anything when you look in the mirror? You reach a point where you don’t look too closely, or you don’t look yourself in the eye because you’re hurting too much.

When I woke up Thursday morning, the first thing I thought was “You look like a broken, pretty mess.”, and it hurt to think that, even though it’s precisely how I feel inside. So now, I’ve boxed myself into a category that I don’t particularly like, but it is what it is.

Someone recently told me that I’m a great person because I embrace the imperfections that make me, me. I don’t see how that makes me a great person. Embracing your flaws and your ability to know when you’re fucked up doesn’t make you good or great, but it does make you human.

When people in your life who claim to love you constantly remind you that you’re a failure, it’s NOT acceptable to allow them to get away with it. When they blame you for things you had nothing to do with, or they turn their own internal issues onto you, you need to step back and say NO. It’s virtually impossible for you to single-handedly be responsible for other people’s issues. I don’t look at anyone and blame them for mine, because that’s inaccurate.

People get offended when I disengage, either by walking away so I don’t murder them or by remaining silent. Silence doesn’t mean I’m not listening or that I’m ignoring you, but it does mean I am not going to accept negativity. I’m not going to allow myself to be harmed by words that don’t hold a whole hell of a lot of truth, and I’m not going to allow myself to be hurt by anyone who is merely lashing out or placing blame because their first instinct is to place blame. If you have issues like that, hit a heavy bag at the gym for an hour, but don’t take your crap out on me. I’m enough of a mess, I don’t need your shit on top of it.

I spend a lot of time talking other people off of their emotional ledges. I can’t tell you the last time someone even made an effort to talk me down from one of mine. The most condescending thing you can say is “I’m sorry to hear that, sweetie.”, and then proceed to talk about yourself and nothing else. I could be bleeding out of an eyeball and I’m certain someone would try to one-up me with somehow being in more pain or dealing with something far more excruciating. I catch myself at times feeling extremely annoyed by that, and yet, people don’t correct themselves. They go around believing the world revolves around them. I genuinely have no idea how they function in society.

I’ve felt invisible for a long time, but I’ve reached that point where I’m starting to believe that only certain types of people can see me. From here on in, if a person cannot truly see me, then I don’t want to be around them. Plain and simple.

So for today, and possibly this entire week, I’ll remain a broken, pretty mess. I’ll write and I’ll struggle, and no one will even glance in my general direction. My hand to G-d, no one will fucking notice because no one gives a shit.

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

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1 in 3 Americans Blame Doctors For National Opioid Epidemic, STAT-Harvard Poll Finds

Link Miss Poison Articles, Opioids , , , , ,

https://www.statnews.com/2016/03/17/stat-harvard-opioid-poll/

The “epidemic” was created by the government. It’s another way to try and control patients. The pharmaceutical companies are jacking up their prices left and right, and I know a lot of people who are fighting their insurance companies to pay for their medication each month.

When you’re telling cancer patients that you’re not going to keep them comfortable, it’s a legitimate problem. Anyone who is terminal or in chronic pain should not be told that there’s nothing that can be done for them.

When you’re drug-testing your patients who have not signed a pain contract, you’re violating some serious laws under the guise of “medicine”.

I make no apologies for blaming doctors who are refusing to be doctors. The Hippocratic Oath states “Do No Harm”. In the past year, it’s become “Do No Harm To Me Or My Bottom Line”; because people are no longer being treated like patients. I had a doctor cut my pain medication off five years ago. I’ve struggled terribly ever since. There was no weaning process (It wasn’t a narcotic.), but I’d taken this medication for Fibromyalgia for fifteen years. I took it as needed. Between that medication and a muscle relaxer, I was better able to function most days. Five years later and I find myself in a place where the disease has progressively gotten worse and there’s no relief in sight. My options are Kratom and CBD oil. Over time, both can become extremely expensive. The CBD oil recommended to me is $224 a bottle. I know it’s something that will last six months or longer because the dosage is tiny, but then I wondered what the hell I’d do if it didn’t help me. I’d not only be out the cash, I’d be back at square one.

I would love to see doctors fighting back against this insanity. Prescribing monthly medication to someone to ease their suffering and give them a slightly better quality of life is far different from legitimate addicts who choose street drugs. Are Vicodin and Percocet the problem? No. Is heroin a problem in North America? Hell yes. It’s a problem in many countries, we aren’t special snowflakes. But let’s not accuse sufferers who are going to doctors for help and call them addicts. People with pain matter.

Doctors are leaving this country to practice medicine elsewhere. This will inevitably lead to less medical school enrollment, leaving us short on potential doctors who could actually do some good.

In a time where the government is fucked beyond words, pain patients MUST support each other and stand up. Voices make a difference when they’re powerful enough to be heard.

It’s Amazing

Miss Poison Honesty, Life, Musings, Pieces Of Me, Poison In Lethal Doses, Writing , , , , , , , , , , , , , , , , , , ,

It’s amazing how quickly life shifts. You think you know your place in this world, and the direction in which you are going. Then, often suddenly and unexpectedly, a letter, phone call, e-mail, or some form of communique shatters the floor beneath your feet. You’re left standing and asking yourself “Why?”, or in my case “Again?” There’s only so much I can handle in a day, but I’ve been dealing with horrible shit for the past eighteen years. When the hell does a person catch a break?! In this respect, I am trying to remain intensely positive because negativity doesn’t help situations one cannot control. The fact that I knew this would happen a few years ago is what upsets me the most. Sometimes, I hate the gift of premonition, and other times I am grateful for it.

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On September 12th, I hurt my back. The pain has progressively worsened. I am terrified to seek emergency treatment due to the “war on opiates” and how badly pain patients are being treated everywhere in the United States. Massachusetts is no different. Every single day I have to hear about people overdosing in various parts of the state. Not on prescription pain medication, but on heroin. How is that MY fault, as a pain patient?! A representative for someone running for State Representative for this district was going door-to-door last Saturday, and specifically asked to speak with me. Obviously they’re looking for the millennial vote. 😉

Her first question was “How can Jen insure your vote on November 8th?” Boy, did she come to the right house. We spoke for about thirty minutes regarding Jen Migliore‘s policy for the opiate issue in this state. I said “Until she works to make sure pain patients get treated like patients, instead of drug addicts, she can’t count on my vote. Until she addresses it and does something to put addicts in a separate category from actual patients, she can’t depend on my vote.” We talked about other issues too, but I made sure this one was front and center. She assured me that if Jen doesn’t call me personally, someone on her campaign staff will. I’d actually be surprised to see her at the front door again because she’s already personally been here once, and that was to get her petition to run for office signed. She was a little too much the “made-up politician” for me when I met her, but it was brief and I will try not to judge a book by its cover, because all too often I am judged for “not looking sick”. She’s 25 years old and running for State Representative, and that takes guts. Is it terrible to say I want to re-do her makeup and make her look more her age?! :/

dontyouhaveahobby

A few days ago a woman stared at me on the street and said “Oh my G-d! What a beautiful girl you are!” I was the only person in a full block radius she could have been talking to, but it startled me. If she hadn’t been old enough to be my Grandmother, I might have believed her. But then I got home (barely) and looked in the mirror. Not only don’t I “look sick”, but I actually looked amazing, for a change. I almost, ALMOST, indulged in a selfie. The first time I took one was about two weeks ago. I sent it to my brother who said “Holy shit! You look so different.” I said “Different bad or different good?” and he said “Good. You look SO GOOD.” My brother never compliments me, so I know it was a genuine reaction. I then sent the same photo to my best friend in Germany and she said I look absolutely beautiful. I suspect cataracts. 😉 For me, it’s a huge issue for others that I “don’t look sick”. My body, however, begs to fucking differ. 😦

But I digress… I have been off of prescription pain medication since 2012. I was the kind of patient who could make fifty Percocet last for two months, or longer, but the majority of my pain medication that I’d refilled each month (because my insurance paid 100% of the cost) was stolen by a family member in late 2012, someone who went through my private things and took thousands of Ultram and about hundred Percocet I had legally obtained for “bad days”, NOT for someone to get high off of. I was enraged when I discovered all of my medicine gone. I legitimately had the ration out what little was leftover for “bad days”. I wanted the person who did it to die; because they couldn’t respect my private space, my private things, or the fact that I am a pain patient that needed that medication to get through every bad day I experience. All of that “back-up medication” was in case I got cut-off from a physician, insurance, proper treatment, etc. Instead, it went to someone who was drug-seeking, and who, to this day, is still apologizing for it because I will never let them forget how evil what they did was.

Four years later and I have exactly two doses of Vicodin left for “bad days”. One pill that I cut in half in order to have two doses. I am in such agony as I sit here typing this that I desperately want one of those doses, but in the back of my mind I know I have roughly nine Aleve in my system. I also know that the pain is so intense, the Vicodin won’t work. 😦 If I had taken it when the pain was still bearable, it would have worked, but it also would have worn off by now. I shouldn’t have to be afraid to seek treatment, but I am. If pain management clinics aren’t doing their job (and there is a long wait to get in, providing you get referred to one.), and rheumatologists are now refusing Fibromyalgia patients and telling them to see neurologists, then where the hell do I go?! Do I pray for a solid PCP and hope they’ll give me Ultram and Flexeril to get through all the “bad days”, or do I hope for more?

My feeling is this: The last three states I’ve lived in royally fucked up my medical history. Each state has, over time, shredded my files instead of turning them over to me, which I feel is every patient’s right, even if we have to pay for the photo copies. My concussion history, which began at a very young age, is non-existent on paper! It makes me look like a liar, and I’d never lie about concussion or post-concussion syndrome, which I still have. There are maybe three doctors who still have files on me, but no one else does, and that means I have to start at square one.

This means going to a PCP here and not saying I have Fibromyalgia. I’ll declare my other health issues, like the migraines, but I am not using the dreaded “F word” with a new doctor until he/she mentions it first. It means letting them run every single test in the book and being officially re-diagnosed. It also means immense stress because I KNOW I’m suffering. I KNOW I’m in pain. I KNOW my blood work does not show any other auto-immune disease, but in the back of my mind I have the “What ifs”. We’ve all had these moments. “What if it’s actually Lyme disease and I’ve gotten false negatives my entire life?!” or “What if it IS Lupus or MS?” Of course, none of those other diagnoses make an ounce of sense; not one. I don’t want to waste my time going to physical therapy (I already know it doesn’t work) or anything nonsensical. This is less about medication and more about the correct treatment methods.

The last neurologist I saw told me Botox for migraines was likely my only remaining option for now, so I need a new neurologist to agree with that and get it approved. I’m okay with needles if it works for me. I’m okay with MRI’s, X-Rays, blood work, etc., so long as I see results in my treatment methods. New MRI’s and X-Rays will show the damage to my spine, which explains much, but who knows what else it will show? I don’t care, so long as it means I am getting the correct treatment.

I have zero faith in the medical community. I’ve been treated here once in an emergency and the Urgent Care staff was amazing, but I had injured my eye and the only thing I was given, despite being in pain for months, was antibiotic gel to put into the eye multiple times per day. I’m still using it, because I don’t believe my eye is fully healed. There are days when it looks SO bad that I worry, and while my vision is not any more impaired than usual, it’s disconcerting. That’s okay though; I need a vision exam ASAP any way. There’s nothing like new glasses and new contact lenses. 🙂 Perhaps I’m the only one who gets excited about such things.

I’m sick and tired of the stress pain patients are put through, and the scrutiny of whether or not we “look sick”. No, I don’t “look sick”. I have seen the faces of other Fibro patients and was absolutely mortified. It made me question so much about myself, and not in a good way.

I have blank cop face most of the time (it helps me avoid wrinkles. Well, that, water, genetics, and SPF 50.), and yes, I wear makeup. I don’t do it for other people; I do it for me. It’s an artistic skill-set that I find enjoyable. It doesn’t mean I’m in less pain than one hundred other people, and I’m not going about to compare and contrast because it is NOT a competition, but when I look in the mirror, I realize why I get treated like my pain isn’t real. My eyes are not dead; they sparkle. My skin is healthy and looks good, with or without makeup, and even my bad hair days are still relatively decent. I don’t look exhausted, even when I am. I consider most of this genetics and the fact that I take really good care of my skin, but it makes me feel even worse to know I don’t “look sick”. Again, it’s not a competition, but I am judged for this harshly.

My body is filled to the brim with pain, but I don’t “look sick”. Would I say that to a cancer patient wearing lipstick? NO. However, unless a person tells you what they suffer from, you just plain don’t know what their battle is in life.

It would be nice to live in a world where we judge less on appearances and took people at their word. Of course, Donald Trump is also running to be President of the United States. Perhaps I’ve landed on the wrong fucking planet! 😦

copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

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Cat is almost three years old! My poor little boo isn’t feeling so hot. 😦 She looks the way I feel.