When You Start Thinking…

“When you start thinking about what your life was like ten years ago–and not in general terms, but in highly specific detail–it’s disturbing to realize how certain elements of your being are completely dead. They die long before you do. It’s astonishing to consider all the things from your past that used to happen all the time but (a) never happen anymore, and (b) never even cross your mind. It’s almost like those things didn’t happen. Or maybe it seems like they just happened to someone else. To someone you don’t really know. To someone you just hung out with for one night, and now you can’t even remember her name.” ―Chuck Klosterman

The Summer Of ‘What The Fuck?’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

The Writer’s Only Responsibility

“The writer’s only responsibility is to his art. He will be completely ruthless if he is a good one. He has a dream. It anguishes him so much he must get rid of it. He has no peace until then. Everything goes by the board: honor, pride, decency, security, happiness, all, to get the book written. If a writer has to rob his mother, he will not hesitate; the ‘Ode on a Grecian Urn’ is worth any number of old ladies.”
William Faulkner