I guess late Friday night has become my new “time to write”. I have no idea when that became a thing, but let’s roll with it, shall we?
My big accomplishment this week was talking to my insurance company and getting an emergency reinstatement, all thanks to someone who knew what she was doing and was the kindest person one could hope to speak with. The best part was, as she was helping me, saying “I don’t know why they needed address confirmation. You already confirmed it twice. And I’m not seeing where they sent you a letter, but apparently they wanted confirmation by June 13th. This makes no sense.” She then told me to call back Wednesday morning. After four hours of not being able to get through to anyone (I love being on hold for an hour and then being hung up on. T speak to a person once this week, it was a six-hour wait on hold, in total, and constantly calling back whenever I was hung up on.), I finally got confirmation through the automated system that I’m “active”. Yay! The downside is that I still have to call again to see if they will reactivate the “child company” before September 1st (I spoke with them, they told me their system might update next week, but there are no guarantees.). It’s still early in the month and there’s no legitimate reason I should have an issue. However, this does mean canceling the neuro follow-up without the “child company” to pay for it, which, lets face it, I had no belief in, any way. When a doctor is out of the room before you’ve finished speaking, it’s not a good sign for things to come. He still hasn’t called me back, still hasn’t squared away medicine or ANYTHING requiring prior authorization, and I don’t see the point in going in without knowing I’m covered for the visit and two, to discuss what? Would he even listen to me? That’s a twenty-minute waste of my time and I simply don’t have the patience for it this month. I’ll reschedule, and maybe between now and then, he can figure out how to get his shit together before I write a scathing review.
I rescheduled one of the appointments I wasn’t able to get into last Friday, but the person who scheduled it informed me I would require the doctor to “discharge me as her patient” in order to see someone else. I listened to the message and “Are you fucking kidding me?” is all I had to offer. I’m a PATIENT, not cattle, not a piece of property “owned” by the overlord. I feel like it would be hypocritical to see this doctor for thirty minutes and then say “Can you discharge me to another physician because, after the way you treated me when we first met, I cannot in good faith work with you moving forward.” Doing so could cut me off from much-needed medication, and I am already angry that she put me in a compromising position with my current primary care doctor, who surprisingly came through for me. And if you’re going to practice what you preach, it is hypocritical to sit with someone you already know isn’t going to work out, merely to get a month’s worth of medication. Plus, how long would I have to wait to see someone new? The whole thing stresses me out and makes me ill. These are things I will have to bring up at my appointment next week, which is also stressing me out.
Every aspect of my life is on hold. Finishing up online classes for a certification? On hold. Starting new classes for a new certification so I can begin a career I actually want to work in? On hold. Being able to get up each morning with zero pain? Probably never going to happen. The issue with suffering from any form of chronic pain is that, if you sign a pain contract, you can be tossed from any doctor’s office if, for example, you decide to use Kratom or CBD oil as an alternative because they might look for it in a drug test. The pain I am in is so bad, all I want to do is go to the emergency room and scream until someone helps me. However, no one wants that put into their chart as “drug-seeking behavior”. I’ve never “sought drugs” in my entire life. The only addiction I’ve ever had in my life was to Polar Seltzer. I’m drinking my first bottle in months because I went off of medication based on sheer forgetfulness. In case you’re wondering, Toasted Coconut is as good as it sounds. 😉
I’m having trouble sleeping soundly. I’ve had a migraine every single day this month, and only had two migraine-free days all of last month. I’m hurting, stressed, frustrated, and fed up. I’d like to sleep soundly, wake up pain-free, and not have to struggle to push myself physically. I was hurting so bad last Sunday, I nearly passed out in public, but not before a woman who has never met me before stopped me at the grocery store to inform me I “look kinda pale”. I went into the stores’ restroom and took a look at my face. Nope, pale is my natural skin-tone. If you don’t know me and have no clue what I look like on any given day, it’s incredibly rude to approach a stranger and say “You look kinda pale.” I turned around and said “Are you being cute?” I was annoyed. It wasn’t the concern of someone stating I didn’t look well, it was something else, and quite frankly, combined with my eye makeup, I wouldn’t have approach ed me at all. The colors I’d used sort of made me look like a vampire. I didn’t notice it until after the fact and once I’ve finished with something like that, I am not taking it off and starting over.
I’m having terrible difficulties writing the things I want to write. After months of research and trying to get the ball rolling with an article revolving around chronic pain patients and the reduction of medicine we’re experiencing as a whole, I’ve had to focus more on my own health than I would normally be able to focus on a body of work. And since then, plenty of people have come forward and written things from their own perspectives. It sort of makes me wonder if I should bother at all, which bugs me, because I don’t like starting something I’ll never finish. It makes me feel like a fuck-up.
Yeah, I’m hard on myself. What might normally work for others in terms of decompressing only manages to stress me out more. I hate hearing these terms “breathing exercises” and “mindfulness”. It’s reached a point where I will throw something hard at you if you mention either. I cannot breathe past the pain I am in, so please spare me the nonsense. I’m plenty mindful, yet apparently not mindful enough for people who preach about it. And yeah, I lack the ability to “go with the flow” because the “flow” is monotonous and makes me want to walk in front of a truck.
No one wants to “exist” and wonder what their purpose is. People keep turning to me with “pain advocate” or “pain activist” issues and here’s the thing; I am having a hard enough time advocating for myself. For someone who has been told I am “always incredibly articulate”, I feel like an absolute moron trying to explain how badly I am suffering and how all I want is relief. I imagine this is what happens when your body is experiencing too much pain on a daily basis with no break. I have NEVER outright said to any doctor “Give me pain meds.” Never, and yet I feel distraught at the thought of being forced into a pain contract or worse, having a year-long (possibly longer) wait to get into any form of pain management. Pain management in Massachusetts is everything BUT pain medication. They will even prioritize surgery over managing your pain. If you will willingly implant a pain pump into my body, but are afraid to give me real medication in that pump, then there is no valid reason for me to put myself through surgery. I’ve never had surgery in my life. I still have both of my wisdom teeth, mostly because I’m stubborn. I know they will likely have to come out by the end of this year, and I’m kind of okay with that, but that is far less invasive than something being implanted into my body that may, or may not, work. See how stressful it all becomes when you think about it?
This is, by no means, the life I signed up for. I had dreams, goals, and things I wanted to achieve. And yet, as I sit here, my entire fucking life is on hold. I, for one, hate it.
I have long since passed “tired” and have reached a state of pure “painsomnia”. No matter what I do, I am in too much pain to sleep properly, if at all. Physically, mentally, and emotionally, I’m not in the correct head-space to allow my body to rest as it needs to. It’s twisted when anyone who suffers as much as I do is completely unable to sleep at times.
Most nights I am sound asleep by three a.m., if not earlier. Last Wednesday night, no matter how many times I tried, sleep alluded me. I had my alarm set and finally got frustrated and said “Fuck it!” I knew there was no way I was going to fall asleep because I couldn’t shut my brain off and the pain I am in is over-the-top excruciating. When you cannot see past the pain you’re in, it’s bad. Pain, as it turns out, is a definitive breaking point. It is exhausting, it is draining, and it makes you feel insane. Your entire body goes on high alert.
I have tried everything to break this cycle, and yet here I sit, trying to figure out how to reach some type of “pain-free” state. But really, what are my options? The emergency room? Kratom? CBD oil? I have NO idea. If I understood the root cause of the pain escalation, I could at least handle it from a medical perspective and make a decision as to how to proceed. However, I am being waylaid by every single doctor that is supposed to be treating me. And lets face it, Kratom and CBD oil aren’t covered by insurance and they can be quite expensive over time. Yes, they are natural methods to relieve pain, but I can say I know very little about CBD oil, despite extensive research. I only know some people swear by it and others say it doesn’t help them, which definitely makes me question the enormity of such an investment. A friend even found a company willing to give me a huge discount, but still, it’s a lot of money for a “What if?”
I have an appointment in a few weeks with my soon-to-be fired primary care physician. The first time I was in her office, I noticed she had pain contracts for her patients in each room. It left me sour on the whole thing because I also noticed an influx of patients that were clearly there for monthly drug tests and new prescriptions. The restrooms are FULL of testing supplies. It looks more like a lab. So, while prescription pain medicine is covered by my insurance, do I want to subject myself to monthly drug tests? No. For one, I’ve never taken narcotic pain medicine daily, and if I did, it was in much lower quantities than prescribed. I’d fail a drug test because I don’t take six pills a day, or however many might be prescribed if I were lucky enough to be taken seriously. Asking me to “bring my bottles” so my pills can be counted and “pee in a cup” each month is treating me like a drug addict when in fact, I am a pain patient. Moreover, I find it interesting that I had to wait two and a half months to be seen for something serious, but she can see other people monthly if they’ve signed a pain contract. It’s insulting. She flat-out said, via that infamous e-mail, that I should “go to the emergency room” when I have a paralytic attack. As if they happen daily and I am able to call for help during said attacks. Instead of being a responsible physician who orders the correct tests prior to my coming in, she blew me off. I will be printing up the entire exchange before she has the opportunity to delete any such evidence. They might just be e-mails, but I honestly never know what a doctor might do to cover their own ass.
I have ZERO trust or faith in this woman to properly treat me, and that is precisely why I have to move on. The second I have a scheduled appointment with the new physician, she will no longer be listed as my primary care doctor. I can still switch at any time. That is a comfort because I’m sick of not being taken seriously.
My migraines are still eating away large chunks of my life. It took the neurologist quite a while to get back to me, but when he did, it was a short message to tell me he could put me on another class of medication. I called him back and said “I’ve been on all of those already; they don’t work.” If he’d requested my chart from my previous neurologist, he would know all of this already. He did not address my request for Relpax or a new anti-nausea medicine, he skipped over it like I hadn’t said anything in the three messages I left for him. I’m sick of playing phone tag. If he can’t get this straight, I can’t keep my appointment at the end of next month. It’s an inconvenience to begin with and the man lacks the ability to listen and actually hear you. It’s not my job to do his for him. Why should I repeat, and pay for, previously failed medications? I care about the crazy chemicals that go into my body and as a patient, I have the right to say no. I played stupid when I said “My insurance does cover Relpax, they just need to hear from you.” and “I belong to a migraine support group and this anti-nausea drug is talked about a lot, do you think I can try it?” A close friend also recommended the anti-nausea medicine, but he only needs to know the basics. Instead of appreciating the fact that I’m an educated patient, he would much prefer for me to be a moron that simply says yes to everything he says. Yeah, that’s not going to happen on my watch.
I’ve decided that if I can’t survive this coming week on over-the-counter pain medication for my back and neck, that I am going to the emergency room. The doctor can kiss my ass if she doesn’t like the decision because ultimately, the hospital CAN admit me, even if only for a few hours, and run all of the necessary tests. If they did, for example, do a drug test, they would find I am 100% drug-free, so they wouldn’t be concerned about giving me pain medication, providing they deemed it necessary. Trust me; I’ve never thought it was more necessary than I currently do. I’ve had broken bones hurt a hell of a lot less than my back and neck do. 😦 I can’t even sit up straight or do anything to stretch my muscles out gently without causing the pain to worsen. And yet, I am the moron popping Aleve, using a heating pad in July, and alternating with ice packs because I am also running a fever. But according to the physician’s assistant “It’s probably just the weather or like your allergies.” If you are trying to be any kind of professional, drop the Valley Girl routine. It’s not cute.
This week I get to meet a new doctor and someone who I believe will be temporary. I’ve once again been handed over to a student, after specifically requesting “no one temporary” (I heard myself say it, so I know it’s not my imagination.), and I will likely have something to say about that after the fact. I am on an incredibly short fuse, so I’ve decided that both people get exactly two chances with me, if that. I legitimately don’t want to go, don’t want to discuss a damn thing except the outrageous amount of pain I am in, and don’t want to waste my time, but again, two chances. If I’m feeling nice (I’m rarely nice.). I hate forcing myself to do things I am not okay with. Chances are if I can’t stand the sound of your voice on the phone, we will NOT get along well in person. I know precisely how intense I can be, and I’ve only recently realized it’s because I’ve been badly burned by certain types of people and I won’t allow the cycle to continue. While some people will say, and have, “You enjoy giving off the impression that you’re a bad ass.”, I don’t think it’s actually occurred to them that I AMa bad ass. You can be a lovely human-being and STILL be a bad ass when you have to be. Believe me, being a bad ass is far better than wearing “the bitch card” 24/7. A bad ass is a position of power where you make all of the important decisions and stand your ground, and it trumps being a bitch every day and twice on Sunday.
I once questioned who the hell a person was without passion; without something they stood for and believed in. I said this in observation of someone else. I said something along the lines of “What does she stand for? She lacks passion. She’s too worried about what others think of her to concern herself with what shethinks of herself.” I vowed not to become a person like that, to always know who I am and what I stand for. So whether it’s advocating for my health or speaking my mind about something specific, I want to come in fighting strong. I feel like hell, but I do not have to look like hell and I don’t have to ever act weak because I am NOT. I am human. I have horrible, bad days. I am stressed, functioning on no sleep and very little caffeine, and there are days I want to break down and hide. But ultimately, I don’t have a choice in the matter. I am doing my BEST. It sucks, it’s not easy, and there are days where I live in pure fear of how far I have fallen, but no matter what, no one will ever be able to say I had zero passion or thought.
She is brave, she is strong. She will get up whenever she falls. She knows herself inside and out. And though she may face challenges, she will face them with courage and hope. And though she be but little, she is fierce. -William Shakespeare
I’m not okay. I’ve tried to be, but ultimately, the first person I have to be honest with is myself. If you start lying to yourself, you can convince the entire world that everything’s fine while the house burns down around you. Everything is absolutely NOT fine because I am NOT fine.
Today was my last appointment with the doctor I’ve talked about; the one I actually like and respect, and that will never change, not unless he runs me over with his car tomorrow, a strong possibility since he’s probably read my work at this point. 😉
While I joked about super glue and other things, I walked out afterward and I thought I was all right, but I’m not. I appreciate the fact that he gave me additional time and didn’t once look at the clock, that we had a real talk, etc., but I caught myself in tears on the drive home. I expected to see black streaks pouring down my face as I quickly glanced in the mirror, assuming there had to be a horrific mess, some evidence that I was as upset on the outside as I was internally, but there was nothing to be seen. Origins GinZing mascara will be getting a ten star review, and let me just say that it’s not even water resistant, leave alone waterproof.
But I digress; there’s a very long waiting period for a therapist. The person I met with was temporary. The only difference is, she immediately disclosed this. However, I don’t need another temporary person to speak with or see every two weeks. I don’t have time for that. I’ve got nothing to say. I also don’t have it in me to build a relationship with someone who is a temporary fix. It’s like putting a Band-Aid on something that requires stitches; and I’m NOT okay with that. It’s also a lot like dating someone for no reason. Why would I bother?! I do NOT like wasting my time. She was perfectly lovely, but what’s the point?! A cushion to fall back on if no one else wants to take me?! This system is so fucked up, it really hurts me. There are people in far worse condition than I, and you’re making them wait six months, or longer, just to get in the door. I will be called in almost two weeks to find out if there’s an opening for me with someone, but if there isn’t, she is willing to see me on a temporary basis. In all honesty, I might say no until there is an opening. It’s exhausting dragging myself there every two weeks as it is. I openly admit, I was doing it to see the doctor because again, I really liked him. Ask anyone; I don’t like people.
When he said “Let’s find you another me.” I replied, “That’s not gonna happen.” (Not unless he’s been cloned, in which case, he really ought to talk to someone about that.) and he said “Okay, let’s find you someone else with a prescription pad.” (The expression on his face was so funny, I laughed. I told you he had a great sense of humor.), despite the fact that I’m only taking a PTSD drug. He did recommend someone else, but honestly, in this moment, I’m not interested in seeing her. I plan on calling him before he leaves for a refill and just leaving it at that for the moment. I don’t take it nightly and a refill should get me through the summer until I’m ready to pursue another doctor, whether it be who he suggested, or not.
I feel like a fucking tennis ball. In a dog’s mouth. I feel so absent within myself. I came home, fed Cat & Kitten at exactly five o’clock (Believe me, they both thought they should have gotten fed the second I walked through the door. They’re OBSESSED little vixens.), washed my face twice, changed my clothes, and after a texting session with my sister, Britt, I fell asleep like the dead. I am so physically, mentally, and emotionally drained that I just want to sit somewhere and cry for the next week. Technically, I can do that, but in all likelihood, it won’t happen. I’ll bottle it up until I have a breakdown of some kind and I’ll keep bottling it up until I snap.
The best compliment I came away with today was “You know yourself really well.” For someone to observe that over six weeks, is a nice feeling.
I’ve never been a fan of square one. It makes me sick. However, I think I just need some time, and space, to think this through.
Wishing my neighbors to the North a Happy Canada Day & my fellow Americans a Happy, Healthy, & Safe 4th Of July weekend!
“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.
Almost two weeks ago, after an appointment with the Certified Nurse Practitioner at my doctor’s office, I went into the afternoon with one thought in mind: What are my triggers? It began to nag at me, until a few things dawned on me.
I keep a food journal to track what I’m eating each day. I’ve done this for a little over a year now, mostly because I wondered if something I was eating was causing my migraines to become worse than they were prior to my move. After going over it repeatedly, I genuinely don’t think my diet is triggering me in terms of stress or my migraines. It’s simple, boring, repetitive, crazy healthy (for the most part), and I’d probably murder you for a Triple Classic with bacon and cheese from Wendy’s and a baked potato with extra sour cream if I went within a minute of the place. Notice I didn’t say a mile. I haven’t touched fast food in almost a year and a half. I catch myself missing it when I’m stressed, or a few days a month when I just NEED a change of pace.
The CNP was exceedingly clueless as to what is causing my blackouts. I would refrain from blonde jokes temporarily, but she opened the door wide open the following morning when she called and yelled at me about the medication that was prescribed to me after she’d left for the day. And by yell, I mean she has a very shrieky voice and it is offensive to my ears, especially when it goes up an octave and she’s actually yelling. She blew off my lab work like it was no big deal when I questioned it, thus leading me to wonder if she can read lab results because I can, and I’m not a medical professional. I questioned the issues because they’re exceedingly visible (Elevated white count, which is NOT uncommon in Fibromyalgia sufferers or in anyone with an autoimmune disease, except I never used either word in my visits to this doctor’s office. I knew my blood work would speak for itself.) and her answer was “Can you like pop in next week and re-do it?” (Said precisely like that.) Um, NO. I’ve got a hematoma that spans three fingers on the inside of my left forearm that IMMEDIATELY bruised. I hadn’t even left the office and it was BLUE, which never happens to me. I’ve applied Arnica gel to help speed up the healing, and it’s looking a lot better now. It went from looking like someone had taken a mallet to my arm, to looking like a trauma version of Saturn, to looking like a heart, and now that it’s almost gone, it’s just plain ugly.), but I’m not rushing back for blood work any time soon. If you aren’t concerned enough to call me about that, which my physician did NOT, then I’m not concerned enough to come running in. In fairness, my doctor should have looked at it and called me to go over it. That’s what every doctor should do if something doesn’t look right. I went in running a fever and that was also blown off like it was no big deal. “It must be because it’s a warm day.” No, that’s not it, USE YOUR BRAIN.
The entire appointment was useless. I didn’t need to come in to tell you I could fail a baseline test, or that my neurology appointment couldn’t be moved up. You didn’t “save me” a trip to the emergency room by having me come in to “assess the situation”. And for the record, they thought I’d come in because of my migraines, NOT because I’m blacking out and losing time almost daily. Why would I go to a primary care physician’s office over migraines?! I wouldn’t.
A smart person would have ordered an MRI or a CT scan ahead of my neuro appointment, just to be on the safe side, but this chick didn’t even have suggestions (Did you know CNPs earn roughly $98,000 a year when they are part of a medical practice? Factor that in and you’ll be able to tap into my disgust.). I was so distracted that I forgot to ask about new anti-nausea meds and a muscle relaxer. It only took three phone calls for that to get cleared up.
When she called to yell at me about the medicine, it was because, in her words, I should “only take the muscle relaxers at night”. I had to bite back the “Duh!” that I was thinking when what I almost said was “Chill, blondie! I wasn’t prescribed an entire bottle of them. I was prescribed fifteen pills.” I paid roughly .30 cents per pill because the doctor who wrote it (not mine) was afraid to give me a full prescription. That annoys me, because it’s more cost effective for me to have a prescription that is a month of medication, as opposed to a few days worth. The normal daily dose for this drug is 80 mgs. I was prescribed 10 mgs. One pill does NOTHING. Two is slightly helpful, but 30 mgs does the trick and helps all of the muscles in my body ease up a smidge. I am going to be extremely honest with my doctor about that when I call for a refill. I don’t particularly like the drug, but if it helps my muscles not be stiff when I wake up, then I’d prefer to stay on it until another doctor says otherwise.
The anti-nausea medicine is for twenty-one pills, which is a little more practical. The whole “passing the buck” onto the neurologist pisses me off. Implying that they could get me in sooner to see him was obviously not handled properly, if at all. The neurologists’ office told me when I got the appointment that this was the first opening available with any of their doctors. There were literally two times on the same day, and I chose the earlier of the two. I took what I could get. I know they’d contact patients if they had cancellations, but obviously, there’s no room. As a first-time appointment, I expected to wait. I’d rather wait and actually get the doctor’s full attention, as opposed to deal with a rushed physician who is completely overbooked.
In all of this craziness, I learned that my ultimate trigger isn’t something I’m eating, but an actual person. Anyone who seems to gain from your misery, pain, isolation, and fear that something is seriously wrong with you is just plain evil and is someone you should probably avoid. It’s not often I find myself hating people, but I realized I hate how I’m being treated. I hate how anyone can deny how horrible their treatment of me is, and in the classic deflection technique, tries to turn it back on me. That’s not love, it is hatred, and it is so palpable, it enrages me.
This person is the ultimate “self-harm”. Rarely is a kind word spoken to or about me, unless there’s an insult thrown into the mix. I’d elaborate, but it chaps my ass to the point where I just can’t. Repeating hateful things said about me that aren’t true is giving the other person credence. When you tell someone who is chronically ill, and has been for the majority of their life, that they “Don’t want to get well.” because they didn’t go running to pick up two prescriptions the second they were filled, or ask for someone else to pick them up, there’s not a whole that that you can say to that, is there? It’s a crock of shit. If a muscle relaxer and anti-nausea medication would cure and/or “heal” me, then I’d have been on both years ago. Is waiting 48-72 hours going to change anything? No. Not one bit. Those medications are not cures. They’re temporary solutions to long-term problems. They will not magically heal me.
When you genuinely care about a person, you don’t ever want to cause them harm with vicious, hateful words. But now I see what others have been trying to tell me for probably the past twenty years; this person doesn’t love me. Maybe they think they do, but when you love someone, you want what’s best for them. You can always say things without being cruel, hurtful, or harmful. If you can’t, there’s something wrong with you.
When you realize that a person in your life, however close or not, is a serious trigger for you, you need to be self-aware when you’re around them, especially if you’re left without a choice. I feel my best when I am completely away from my triggers, both human and otherwise, but I know that’s not always a possibility for everyone. Hell, it’s not a possibility for me at the moment, but at least I’ve fully identified the target and know how to deal with it.
The neutered, “I’ve been to therapy” Lisa would disengage, say nothing, and walk away, but would internally be enraged. However, I’ve decided that particular version of me isn’t acceptable in my daily life any more, whether I’m going to therapy or not, so I’ve decided to let the other person (and people) know that their mouth is a problem and that I expect them to keep it in check with me. Yes, they will likely slip up here and there, but it’s my duty to correct them immediately, or the issue will get bigger and continue to fester. It’s easier for me to say what needs to be said and shut it down, so I am able to let it go. Mostly because, I don’t think I’d be a very good inmate.
When coping with triggers, it’s important to first identify them. If you are able to write them down and nail them the first time you try, that’s good. If you need to nail them down in therapy, or over time, that’s good, too. It shows growth. It comes down to “What/who hurts me the most.” I see a lot of people mention family issues as major triggers, or their wife/husband/partners, friends, children, etc., and all of that is normal. You definitely want to write those down if they’re affecting you and find a way to turn it around, but also look at your past and present, as well. You might even want to look into future things you know will take place that are causing you some form of triggered pain.
Ultimately, we’re all different. I’m not Zen enough to ignore rudeness and insults that are blatant and feel personal. I can let a lot fly, but there are things I MUST call people on. And if I happen to remain silent about something, it will eventually come out at a more appropriate time. I do believe in the “write it out” philosophy, too. I am lucky in that 99% of the people who effect me do not know I write and if they do, they don’t read my work, so I can come here any time and write exactly what I’m thinking or feeling. I can be my authentic self, and if they ever stumble upon it (they aren’t interested, so the chances are slim to none), they’re probably too stupid to know who or what I am talking about.
When I used to write about friendships, one of my best friends thought everything I wrote was about her (on occasion it was. She should know better than to piss me off or push my buttons.), but I never named names, and I never would. Most of the time what I am writing is a generalization and pertains to no one in particular. If I have to resort to calling someone out by name, that’s a pretty sad day in my writing career, but I’d do it in a New York Minute if I had no other choice. Otherwise, I like to keep my integrity in check.
From here on in, I am willing to “pull the trigger”. That’s my analogy for shooting down someone or something that is causing me any form of harm or emotional pain. No more.
I’ve been through hell and back. I have the scars and the ashes to prove it, but I’m done feeling victimized and/or excluded from my life. I’m in control. I am the boss. If you step out of line, prepare for the warning shot. I only warn once.
Just when I thought it wasn’t possible to feel any worse than I have these last few weeks, I woke up this morning and the pain is at an all-time new high for INSANITY.
You know those pain scales every doctor’s office has posted with idiotic faces? There is no logical way to say “Oh, I’m at an eight.” when in fact you’re at a fifty for your own personal pain threshold. We’re all drastically different. What I do on days when my pain is at a ten are things that would kill the everyday, average person. The pain scale is one of the most inaccurate things I’ve ever witnessed in life. It’s also unfair to those who suffer daily. It tells you that a ten is “The worst pain you’ve ever experienced in life”. That’s most days for me, it’s not “on occasion”. A five or six would be my every day baseline according to that chart, but as I stated, it is inaccurate. I have no choice but to function at 50-85% pain every day of my life. Give me a chart for that! 😦
There are pains we’re warned about in life, at least as women. Menstrual cramps, childbirth, toothaches, ear infections, sinus pain & pressure, a burst appendix, gallbladder pain, post-surgical pain, broken bones, etc., but nothing in life quite prepares you for a searing migraine that will not go away OR the physical body pain that has decided to accompany it, courtesy of Fibromyalgia. My arms, legs, every muscle, joint, tendon, and perhaps things I may have missed are on fire. This comes from a ravishing creature who sat through four tattoos and didn’t bat an eyelash. That felt GOOD compared to what I am currently experiencing, and yes, I paid for that “luxury”.
My main task yesterday was showering, getting dressed, and getting my butt to Urgent Care. This sounds SO easy. Have you ever tried showering when half of your body doesn’t want to move or work properly? It makes it a very tedious task, indeed. I pushed through though, after a short nap (When you’re an adult who needs naps, it’s not the kindergarten kind of nap one dreams of. It’s the nap where you’re desperately trying to rest and your cell phone genuinely needs to be tossed out a window, except you need the damn alarm on it, on the off-chance you over-sleep.). I had reserved a time slot on their website on Thursday, and that had been a very smart idea because when I arrived, they took me quickly.
So, how do I feel today? STUPID. I will never go to Urgent Care again for a migraine. I asked them in advance if they handled severe migraines and they said yes, but this is clearly more suited to the emergency room. It’s technically NOT an emergency, but it IS when you need access to the medications an ER can provide that a walk-in clinic doesn’t have on hand. Sad, but true.
I was treated perfectly fine, they were very caring and kind, but after I got home, the anti-nausea meds I’d been given in the IV, along with Toradol, proved they were not only ineffective, but I am clearly allergic to one or both of them. I took a second dose of the anti-nausea medicine (normally given only to cancer patients) before bed and I am paying for it this morning. I’m nauseous AND my stomach is on fire, which makes me wonder if my ulcer has returned. I had one years ago and it took a long time before it healed (I was warned that with too much stress, it would return) and I could stop taking medicine for it, but that is pain you NEVER forget when you’ve live with it for years on end.
I have had ZERO pain relief. This means calling my doctor on Monday and making an appointment because I can’t get through a month of this until I see my new neurologist. If it is indeed my ulcer, I can go back on probiotics or OTC Nexium until I can see someone, but it is CRAZY to suffer like this.
The worst part in all of this is that I do NOT want to get out of bed. Technically, I already am (Kitten was crazy aggressive this morning because I was late getting home to feed them. She thought breakfast time was the second my head lifted off the pillow!), but my point is, I want quality rest, not six fitful hours of torture vaguely masked as “sleep”. And for the past few days, more than once, I have wondered how much stress factors into how I am currently feeling and what I am going through.
Stress can cause so much damage, and oftentimes, we don’t consider it as a factor in our health issues. I can’t remember which doctor asked if I was under a lot of stress (I believe it was my neurologist, though. It was a long time ago.), but I do remember saying “YES!” His answer was “You need a vacation.” Gee, why didn’t I think of that?! <rolls eyes>
Wouldn’t we ALL love to go away and completely detox from the stress of our lives (Relax, I didn’t say we all had to go together!)? Yes, most of us would. Anyone who says they have zero stress in their life is lying, or a delusional billionaire.
Pain should not make you feel like you’re being eaten alive by a Komodo dragon, but sometimes, that’s exactly what you feel like. I wish I could say I was being dramatic. If anything, I’m downplaying it. 😦
The best part of my Urgent Care visit was the doctor saying he doesn’t think I suffer from migraines. Excuse me?! Every highly educated neurologist I’ve ever seen has declared that I do indeed suffer from migraines, but you think it’s “just tension“?! My blood pressure was through the roof; that’s not tension, that’s PAIN. Mind you, a smarter doctor would have seen fit to provide me with muscle relaxers if he thought it was “just tension“. My neck is indeed tight and sore, not to mention achy as hell, but it’s dealing with a lot and I chose not to disclose my spinal damage to him since it’s already in bold-type in my chart. A chart he couldn’t seem to read since he repeatedly asked me the same questions over and over again.
I’ve learned my lesson. Urgent Care isn’t suited to migraines. Unfortunately, a busy emergency room isn’t much help either, but if ever I am in this position again, that’s where I’m going. Under duress.
To add insult to injury, the pain medicine he prescribed couldn’t touch any of this with a ten foot pole. I took one last night in the hopes it would help, but it didn’t touch the migraine (it helped everything else temporarily). Even better, he claimed on the prescription that I asked for half the normal dose, which I did NOT. No sane pain patient would ask you to give them less pain medicine for the same price. That’s over 50 cents per pill for a medication that doesn’t even cost 10 cents to make. My insurance company should be shot for charging me full price.
I honestly just want to lie here and moan. 😦 But mostly, I am praying this horrible nausea goes away. Obviously, today is one of those days where you have no choice but to stay in bed and rest. Bleh! I hate days like this.
Wishing you all a stress-free, no-pain weekend. I hope someone had good Mexican food for me yesterday. As bad as I feel, I would murder someone for a taco!