Earlier in the day I was thinking about someone I know, and how long he had to keep his sexuality a secret, out of fear that his friends, family, and career would all fade away. It disturbed me. It still does. I’m happy that he was able to tell everyone in his life, met someone, got married, and his friendships and career remain in tact.
I don’t sit around much thinking about hiding anything about WHO I am as a person. I believe we all deserve a huge measure of privacy for things that simply aren’t someone else’s business, but I’m also judged as a heterosexual woman who isn’t married.
Between the cat jokes, which I don’t find humorous, to men, on occasion, slamming a door in my face in public. I don’t believe I am a minority, but as I look around, I know that I am, in pretty much all aspects of my life. There is always an assumption made about me. Each one is wrong.
There’s nothing wrong with knowing your worth and adding interest. There’s nothing wrong with being a strong person who, on occasion, needs to meltdown and rebuild herself out of the ashes.
I am still trying to accept me, and I imagine many people struggle with this privately. I find myself needing more quiet than normal, because I’m going through some awful things and it all wounds me deeply. But I’m trying.
I’m real. I have standards, and there’s NOTHING wrong with any of that.
I have both nothing to say, and a lot to say, so I’ve chosen to remain silent for the past few weeks. You can never get into trouble by keeping your mouth shut.
I sit here tonight, coughing my brains out, questioning how I somehow got sick in twenty-four hours when I’ve obsessively taken precautions against illness. I’m loaded up on Benadryl, in case it’s “just my allergies”, which I love hearing every time I see a doctor and ask if I have an ear or sinus infection (except for earlier this year when I, indeed, had both). I’m trying to soothe the sore throat that I swear, I did not have a few hours ago. I swear by Ricola herb cough drops.
If you’ve been reading my work for a year or two, you know I hate getting sick. I especially hate knowing it will happen right before my special day; the one day I don’t have to share with anyone else, unless I want to. Every damn year, like clockwork. It doesn’t exactly excite me. 😦
After last year’s debacle, I don’t want to do a whole lot this year, and frankly, no one is willing to tag along. Yes, I still want to feel special, I still want to enjoy something, but I don’t want anyone making a ridiculous or offensive comment about what I enjoy, or saying something hurtful because they think they’re owed something. That attitude and behavior doesn’t fly well with me.
Someone messaged me earlier to ask if I want anything special for my birthday. I was polite, mainly because this person accused me of something I find heinous over the summer, and then I talked with my brother about it. He gives the best advice. A lot of people would be dead if it weren’t for my brother talking me down at the height of my anger. I love how he said “Don’t hold it against her for the rest of her life (Apparently he has forgotten how legendary the “female grudge” can be in my family.). Just take note that she rolls like that and remember.”
As much as I try to accept everyone as they are, I struggle with people who say shitty things and think it’s no big deal. I hate having to rein in my temper when I genuinely want to haul off on someone. It’s a boundary thing, really. Also, a person clearly doesn’t know me very well if they are asking me, on the night before my birthday, if there’s something special I’d like. Yeah, my sanity, but bourbon will do (I’m being a smart ass. My actual response was far more polite than I would like to be.).
I want things that help me create. It could be a set of artist’s markers and some very cool coloring books, or it could be a new eye shadow palette and some brushes. It could be paint and things to be painted, etc. Writing isn’t my only creative outlet. I appreciate when people honor that, as opposed to criticizing it. If someone is talented and I know they need things to occupy their mind during sleepless nights or bad days, then I am absolutely going to do something to encourage their creativity.
For a while now, I’ve been painting shells for the garden. Not because I have to, but because for 20-30 minutes here and there, it gives me something creative to focus on. It takes me away from my writing and gives me a different type of canvas to work with.
Shells with texture absorb a lot of paint to truly be “painted”, but it’s worth it when you see your crazy designs in the end. Every single design has been mostly intentional. I have about eight to finish, and even though they’ll likely come inside for winter, they are glazed to withstand the elements. After all, most of these shells once housed ocean creatures, and they survived the rough waters. Rain and snow are nothing compared to the deep, blue sea.
So as I sit here on the eve of my birthday, I encourage you to create. But most importantly, I encourage you to get out of your comfort zone and try something new. It’s worth it.
A few weeks ago someone friended me on Facebook. Under normal circumstances I only accept requests from people I know in real life or people I have met via a migraine or Fibromyalgia/ Chronic Pain group. I’ve met some great people who have become good friends almost immediately. Sometimes you click with someone and you’re good, despite not seeing them every single day of your life. But every once in a while, someone comes along and their intentions are less than honorable.
Here’s precisely what went down with this particular person.
#1: He friended me and I was busy, so I accepted it thinking he was from my migraine group. When I went to do a little recon, I found that his profile had exactly three photos, and he’d joined in February of 2017. He had the prerequisite photo of “himself” in the desert holding a gun. He claimed he worked “at U.S. Army”. Red flag. Why? He didn’t have a single friend or family member listed. That’s odd, especially when a person is friending you out of the blue.
#2: He immediately messages me. And by immediately, I mean I don’t think it took him thirty seconds. Everything about the interaction screamed “This is not the person in the photos.”, and because I trust my intuition, I reported him to Facebook. HUGE red flag.
#3: Facebook, as usual, did nothing. The profile was deleted for less than a few hours and then he was suddenly back on my friends list. I decided to let it go, as long as the messages stopped.
#4: When he messaged me after midnight and his English is about as American as my knowledge of Indo-Iranian languages, I called him on his shit.
#5: Instead of being honest, especially after I said “Your profile states that you’re U.S. Military, but your command of the English language shows otherwise.”, he tried to maintain the charade. “Sorry! I didn’t understand you better.” Americans don’t talk like that. We know proper tense.
#6: “Okay, but you hardly ever talk to me dear.” How many guys do you know who talk like that? I responded by saying “You are an absolute stranger and I’m not dumb.” He stated “What does that mean?” Even the dimmest person would realize I’m on to them and back off. Someone smarter would have immediately unfriended me. He didn’t. I was very direct with my response. I flat-out said he was not who he was professing to be and he replied “Are you kidding me? I am who I am and no one else is me.” He said a few other things and again, the English was SO off. Instead of continuing the nonsensical back and forth (which I do not have time for), I unfriended him, reported him again, and blocked him.
If someone friends you, do a little background on them if you don’t know them from work, every day life, etc. I attract different types of people because I’m a writer and I’m affiliated with some pain groups, one of which I founded and maintain, as well as some groups for specific interests, etc. But I’m NOT fucking stupid. I speak more than one language fluently and I know how Americans sound, even via text message or Facebook Messenger. There is a distinction to American English that does not translate into or out of other languages. Two of my best friends are German and Israeli, by birth. Each speaks English as a second language. I’ve been friends with both of them for over twenty years. On occasion, one or both of them will say something and they’ll state “This may not translate into English well, but…” They are honest and they own the fact that certain things get lost in translation. I have other friends who are polyglots and they, like me, will be the first to say that a lot of things can get lost in translation when English is your first language.
There are all kinds of people out there, but you are my readers and I want each and every one of you to be safe on the Internet. Don’t take anyone at face value until they prove themselves to you, just like you would expect in real life.
I know a lot of people are lonely and they look for people to chat with in chat rooms and assorted forums. IRC is one of the larger forums I know of because my brother has used it since he was a kid, making good friends along the way, but also losing friends because of it in terribly tragic ways. 😦
Be careful who you “friend” and be careful who you talk to. Not everyone is authentic. Don’t be so quick to trust. Trust your intuition and don’t be so willing to give out personal info.
Always, ALWAYS, trust your gut, and even more so if you see a red flag go up. Your gut instinct is the one part of you that will never lie.
There are real people in this world, but there are also fake people and fake profiles. Unfortunately, that is the land of social media.
The past two years have been incredibly hard on my brother. I have no words for what he has been through, or for the things he continues to battle easy day. For the past ten years or so, all we’ve had that we can truly count on, as siblings, is each other.
I remember the day he was born. The phone rang and I wasn’t pleased hearing I had a little brother. I was determined a sister would be coming home. And by determined, I mean adamant. There was simply no way anyone was going to convince me that a brother was a good thing.
We share the same birthday in neighboring months and our birth times are similar. We were born in the same hospital, but because the maternity ward had been moved and remodeled, our birth certificates state we were born in different zip codes.
I remember the day he came home from the hospital. He looked up at me from my mother’s arms and I was suddenly the most important person in his world. He knew exactly who to trust.
He would scream and cry whenever I was out of his visual field. I’d come running into the room and as soon as he saw me, he’d stop crying. He’d go from red-faced hysteria to laughter and giggles, because I always made him smile.
Up until a month ago, I hadn’t heard from my brother in four months. Every single day, I was convinced something horrible had happened and that I would soon get a call from a police officer or a coroner’s office. I was mentally prepared for the worst. What I got was an unfortunate shock I wouldn’t wish on anyone. But ultimately, the shock led to my brother being okay, and that is a relief.
A lot of people do not share close relationships with their siblings, for various reasons, and I understand that. But for me, my brother is the one person who will always have my back. He is someone who knows me really well. He’s one of my best friends.
I haven’t seen my brother in nearly two years, but nothing and no one can break the bond between us. He is the one living person who knows how to take the things I say. He knows when I’m truly being sarcastic, or when I’m simply making a statement. Even via text, my humor and delivery are not lost on him. He makes no assumptions with me because he actually knows me.
Together, and individually, we’ve been through a lot. It’s mind-numbing and disturbing to think about, but it’s life. Each of us is on a journey and for a while now, I’ve known that I somehow got dragged into my brother’s journey and life lessons. I wish I knew how to focus solely on myself, but I wasn’t raised to be selfish or to pretend that another person doesn’t matter. There are many people you walk away from, including family members, but I choose not to walk away from my brother because I know his heart. I don’t know one side to base my judgment on; I know the entirety.
I have the “luxury” of focusing solely on my health right now, but I know the odds aren’t in my favor. My brother has managed to survive quadruple bypass surgery, two operations due to staph infections, and several other procedures, all in less than two years. He has another treatment in a few months, and it scares me because I don’t trust it. I have a right to be concerned because as he pointed out “You’re the only one who truly cares.” He’s right, and knowing that angers the hell out of me.
Every family is different and each family’s dynamics are also going to be different. However, I was clearly raised right. I can go from zero to psycho in less than three seconds, but when it comes to most people, they simply aren’t worth it. My brother may not be of value to other “family members”, most of whom should be lined up and shot, but he’s of value to me because he’s MY brother. You don’t mess with what’s MINE, and that includes people. It may seem arrogant, but once you’re a part of my life and heart, I won’t allow you to be hurt by others.
I am proud of how far he has come, and I won’t allow anyone else to take the credit for it. He still has battles and challenges, and I will forever be a dragon slayer for him, if need be.
So today, on his birthday, I say “Welcome to the rest of your life. Don’t fuck it up.”
I finally have documentation on my medical chart that I have Fibromyalgia. What I find odd is that the doctor didn’t check for trigger points or question the discussion, she simply added it to my “history”. If the original doctor who diagnosed me in 2003/2004 had remembered to put it in my chart back then, I’d be dealing with a lot less stress now, but he didn’t. He also said he “did not remember ever having such a conversation”. Of course you don’t; you don’t have my memory and you aren’t the fucking patient! I think we can all safely agree that when a doctor doesn’t do their due diligence, it’s upsetting. From here on in, the words “Please put that in my chart.” are going to be ingrained into my speech at every appointment. All it takes is one idiot, and that’s unacceptable in my eyes.
If he had never said “I firmly believe you have Fibromyalgia.”, after running the gamut of testing and everything came up negative, I might have had to learn about it the way so many other people do; on the Internet. Instead, I walked away relieved, thinking “Thank God I don’t have lupus.” He didn’t explain Fibromyalgia or discuss the progressive nature of it, or I wouldn’t have been so fixated on testing negative for lupus. I had no idea how stupid my thought process was that day. Because in reality, I’d maybe heard of Fibromyalgia in passing, but I had definitely heard first-hand horrors about lupus. In the years that have since passed, we are much more aware of the horrors of Fibromyalgia and precisely how progressive it is, and widespread, as a community of chronic pain sufferers.
I feel a little better that I have a referral for a new neurologist after explaining how I am being ignored by the current “physician” (The man returned my phone calls ONCE. Since then, crickets.), and I use that term loosely. Initially she refused to refer me to someone else when I called and said the appointment was an absolute bust, but in person, hearing about it, she changed her tune. Of course, she also wasted a month and a half of my time because she should have had my back when I said something wasn’t right with the other doctor. I am being sent for x-rays of my cervical and lower lumbar spine, and the doctor said she’ll discuss direction with me when she receives the results. Now if only I could physically move my body… 😦
I talked about how bad the pain was. I’m not 100% certain she took that seriously. My baseline is an eight, which is honestly more like a fifteen for the average pain patient, but when doctors hear that, they react badly, so I stuck with the eight. Now while I am relieved she prescribed muscle relaxers, I was filling out some paperwork very early this morning and noticed a derogatory remark in her notes. It’s highly inappropriate to say to a person’s face (I would NEVER.), so to see it in black and white made me see RED. It genuinely put me back into the whole “I need a new doctor.” position, and I am still on a waiting list to be seen by a different physician in a few months. I firmly feel this is the best course of action. If I don’t like the new doctor, I can always go back to this one, but I feel like it’s important to get a second opinion and, quite possibly, a different perspective. You can only “Uh huh.” me so many times and look at the computer instead of me before I inevitably lose my patience.
Why does a derogatory remark bother me? Because if this was deemed an issue she felt she could put into my notes, but not say to my face as any type of concern, then that is a serious communication issue for me. Moreover, by not talking about it with me, she made an enormous assumption which I know for a fact isn’t true. Please, do not make assumptions about people based on looks, height, weight, skin color, ethnicity, level of education, etc. In other words, DON’T MAKE ASSUMPTIONS AT ALL.
I’ve met Ivy League educated people who were dumber than a box of rocks with twelve piles of shit on top (one was a doctor who’d gone to three different Ivy League schools. Not only was he a moron, but he had all the warmth and compassion of a dead roach. He had zero empathy and cared only about the enormous check he got at the end of each session. He did NOT last long in my world.). I’ve met people with GEDs who made me feel inferior on the intelligence scale, and I’m not stupid, so I try not to judge a book by its cover.
When I see the nurse practitioner in a few weeks, I am going to demand that comment be removed from my chart. It was an assumption, but if it’s not fact, don’t put it in my medical records. Period. I’m a patient, and I want to be taken seriously, but when you write things like that, another doctor might see it and make an error in judgment that I simply don’t deem fair.
When women judge other women without any facts, it pisses me off. I have no right to do it, despite the fact that I am human and occasionally make a snap judgment or a snarky comment (privately). However, I do not know another woman’s story, pain, health, or journey, and taking her down to a tiny square of humanity is wrong. If I don’t want it done to me, then I cannot do it to others. There’s a time and place for joking, but NOT at the doctor’s office.
How sad is it that this reaffirmed my desire to only see male physicians? I’d rather deal with someone who’ll speak up and be real, as opposed to someone who smiles in my face and puts a nasty comment in my medical history. Ladies, you’re not doing the world ANY favors by being rude to female patients. Treat people equally and treat them with respect, or don’t treat them at all. Go into another line of work, but don’t be a bitch. The same way I’ll call out a male doctor for a douche bag comment is not dissimilar to how I’ll tell a female doctor she’s off base. For some reason, men always know precisely how to take what I’m saying and women just get offended that I called them out on their bullshit. In this particular appointment, I probably corrected her half a dozen times, maybe more. I wasn’t there to nitpick or play games, I was there for a serious discussion. Zero compassion, zero empathy, and very little eye contact because she was looking at the computer, not at me. Now while she did appear to be listening, I was the last appointment of the day and got more time than originally scheduled for, but it still wasn’t “enough”.
She said she wanted to follow-up with me “in a few weeks”, but they saw she didn’t have an opening for six weeks. There is NO reason why I should have to wait six weeks to be seen after waiting two and a half months to be seen this time around. It’s disrespectful, not to mention ridiculous. It was her decision to pass me off to the nurse practitioner and while I’m not happy about that, I can only say “Lets see how it goes.” I know a few people who prefer their NP over the doctor, but I still reserve the right to meet with a new doctor when an opening comes up and see how it goes. I deserve better care, period. I was assured that once I am “in” with the new doctor, follow-up appointments are not difficult to get and don’t take months. I need to see for myself, even though she’s further away. And I like the fact that she sees ten new patients a week and does her best to get through the waiting list by doing so. That means something to me. So, I’ll see how it goes when the time comes.
Tonight, I am trying to gear myself up for the x-rays tomorrow. I’m grateful that the hospital can take films 24/7, even on weekends. I hope that by mid-day, my body is loose enough muscle-wise that I can get that taken care of and go on with my day. I have so much to squeeze into this weekend and honestly, the thought fucking exhausts me. If I went back to caffeine, I’d be able to do it without issue, but I don’t know if that’s the healthiest choice to make, so I’m going to play it by ear. Overall, all I can truly do is my best. I’m tired of being told, and shown, that my best is never good enough.
Instead of getting to enjoy my weekends, or brief moments, I have to suck it up and force myself to do things I physically cannot do much any more. If only every day people understood this. 😦
For now, the Fibromyalgia is official. But at what cost? Don’t for a single second think I don’t wonder if I was misdiagnosed and I have something else, because I do. The more I learn, the more I question. As should we all.
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.
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.
Written by LISA MARINO-Molchanova 