“Be patient with yourself, for we are all on this journey of life together.” -Jay D’Cee
“You need to spend time crawling alone through shadows to truly appreciate what it is to stand in the sun.” ―Shaun Hick
“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.
“I never cared about the material things a man could give me. I care about his time, attention, honesty, loyalty, and effort. Those gifts mean more than anything money could buy.” -Unknown
There is something about summer that causes terrible insomnia for me. It’s not just the blistering heat & humidity of the days (and many nights). Even on cooler nights, I find myself completely and utterly unable to sleep. It’s awful, especially when I’m yawning at 7:30 PM thinking “I can’t wait to be in bed before 9:30.” I typically have to be in the midst of an excruciating migraine, Fibro flare, on allergy meds, or take a hefty dose of Melatonin to be in bed early these days. And let me tell you something; I’m not the least bit entertained by it.
Normally when I cannot sleep, I read or watch something I’ve seen a million times. Eventually I get bored/sleepy and it’s lights out. Sometimes I listen to music and that will help, but other times it makes my brain even more responsive, and that’s not helpful at all. I have tried re-reading some of my favorite books and every time I do, the next thing I know it’s 5:30 a.m. and I’ve got at least one cat crying to be fed or both of them wreaking some kind of havoc that annoys me and lulls me into the belief that if I feed them, they will calm down. Generally, they just walk away from the food and go back for it later on, but much meowing or pawing of the Mommy occurs before the “calming down” process. It irritates the hell out of me. I am NOT a morning person. Hell, I’m not even a day person!
Thursday morning I sat here unable to sleep. Kitten was 100% OUT next to me. She’d been sleeping soundly for about four hours or so while I’d done everything I could think of to put myself to bed. I eventually got about 2 1/2 hours of sleep, but after that, I was a prisoner to the day. I was so sleep-deprived that when I went outside around 3:30 to water the plants and herbs, I kept visualizing myself being found there at some point, ravaged by the neighbor’s dogs. It wasn’t just the heat and the sun’s intensity, it was that delirious state you often reach when you’re so sleep-deprived, you’d kill for 12 hours of solid, uninterrupted rest. Lack of proper rest screws with your body over time. I can’t remember the last time I truly slept well.
Last night, severely determined, I took a dose of Melatonin and was in bed by 9:15. The downside? I was up by 3:30. Not what I had in mind, AT ALL. 😦 Despite suffering pain-wise, I’d prefer not to need a nap by 10;30 in the morning. I’d also prefer to avoid additional encounters where I cannot account for 2-4 hours of my day.
For the next week, the forecast is 80’s and 90’s. Only one day is slated for rain and thunderstorms. Heat and humidity make me viciously cranky and unpleasant. It makes me feel even more like a prisoner than I already do. 😦 I cannot enjoy “the great outdoors” when the heat index dictates that I need to drink a gallon or two of water, especially when I feel like it’s so hot I cannot breathe, or when the heat affects my eyes and makes my contact lenses cloudy and/or gooey. My allergies are awful. Even just typing these words makes me feel like a kvetchy bitch, but I’d rather be honest than pretend. Extreme temperatures are NOT my friend. Insect bites and sunburns are not a badge of honor that you’ve enjoyed the summer. I NEVER enjoy the summer, and I’d like to avoid all things involving damage to the skin.
There are no good suggestions for “things to do” when it’s this hot. Sure, you can walk the mall for no reason whatsoever, you can go to the movies, you can mindlessly walk around the book store, you can hit up a museum, but all of those things require energy I don’t always have. My patience is nil and my ability to make small talk is nonexistent. I don’t want to talk about anything serious either, because I am up to my ears in serious and do not care for or want any additional drama. I’m doing my best, my best is never good enough, and that’s the way the cookie crumbles, apparently. At this point, I’d rather discuss absolute nonsense, and that’s sad, because I am NOT a nonsensical conversationalist.
On one level, I could take the opportunity to hibernate and watch the Olympics, but let’s face it; that’s not going to happen. I will watch what I can of the opening ceremony (I already have it set to record on my DVR. I do not plan on watching it live.), some gymnastics, and the closing ceremony. The problem with watching gymnastics is that, as a former gymnast, I do gymnastics in my sleep. I remember every routine I’ve ever done and my brain works in mysterious ways. I’ve been lucky to retain nearly my flexibility, but NO, stretching does not minimize the pain of Fibromyalgia and things like yoga annoy the shit out of me. I am a physical kind of person, so if I’m going to workout, I need to be punching things or doing something that brings about results. I do pay an immense price for punching things; it kills my arms, back, and muscles I didn’t even know I have or utilize, but it makes me feel better mentally. I have many creative outlets, but so few mental outlets. Clearly, it’s time to search for something new.
The whole library debacle is ongoing. After sending a formal complaint to the Director, the only results I’ve seen was the removal of $50+ in late fees they slapped on to my account because no one ever picked up the 14 items that were sitting here, half of which had been delivered five days after being checked out. I was so annoyed that I didn’t have time to read any of the books (I started one and got about 100 or so pages in, but I really wanted to be able to finish it.) and I still haven’t listened to any of the music I burned. I do hope the issue is resolved soon. On the plus side, I am caught up on The Good Wife after discovering six seasons of it are available on Streampix as part of my cable package. I was able to watch season four, which is apparently when I started watching in the first place. That was precisely what I thought originally, so now I’m over it. I can barely watch an hour of TV most days. I am so focused on getting work done and acquiring more work that it’s easy for my DVR to fill up and for me to miss things for months on end. At one point, I hadn’t turned it the TV on in a few months. It’s new, so it had calculated the energy/electricity saved and how many hours it had been since I’d last had it on. I had one of those moments where I thought “Wow! You have NO life whatsoever.” Of course, I tend to think that daily, but realizing that my new flat screen is basically collecting dust pissed me off. It was a gift, a “sense of normalcy to help me transition” after my move, but nothing is normal, I am not “transitioned”, and I have little time to enjoy the things I normally love. 😦 My life feels like it is dictated to me, as opposed to my choice. That doesn’t make me feel good about myself and I suspect it’s not supposed to.
And so, another day begins. Sun, heat, prepping for an interview for next week, being ignored by Cat (Kitten has already had breakfast and is sleeping peacefully beside me. She talks in her sleep. LOL.), and a zillion thoughts facing through my head. I’d like to go through the next few days without an interrogation, stress, deepening depression, or thoughts of walking in front of moving vehicles. I can’t afford to deal with broken bones (physically) and I really cannot handle dealing with anyone giving me the third, fourth, or tenth degree. I’ve bitten my tongue for far too long. One more push will likely send me over the edge and it won’t be pretty. However, it’ll feel damn good not to hold back the force of my personality any longer. I am only an opponent when someone forces me to be one. I make no promises if you continually push my buttons. In this, I think many of us are the same. We don’t actively go looking for the craziness that comes our way, but we won’t back down if you get in our face, either.
Wishing you all an easy Friday and a wonderful weekend to come! 🙂
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.