I’m still not doing too great post-treatment. I’m either sleeping too little or too much, and the amount of pain I am in may last another 7-10 days. The plus side of this is that I was approved to start taking Nurtec. I’ll figure this out as I go, but thus far, I haven’t heard a single negative thing about it. Considering all the migraine sufferers in the world and the suddenness of the CGRP drugs being pushed through slightly over two years ago, only hearing positive things is a lot like finding a unicorn. I will know more when the hospital pharmacy delivers it to me in a few days.
Beyond this, I am trying to ease up on myself. As someone who is harder on herself than anyone else could possibly be, I’m trying to take it easy. I am trying to tell myself it’s okay if I can’t do something immediately. I have to tell myself that if I needed to sleep, then that’s what I should be doing. I’m about 20% less stressed since I started this mantra of putting less pressure on myself to get things done, but that doesn’t mean anxiety and stress don’t rear their ugly heads, because THEY DO.
Today was an epic fail. Initially, I couldn’t fall sleep, so I took medication my doctor prescribed, at a higher dose that we’ve talked about over the past month or so. It doesn’t always hit me hard (or at all), but this time, it put me down for the count. I was awake just long enough to drink a lot of water and ended up back in bed for seven hours. This was after getting roughly eight hours of sleep, so clearly, this dose is too high for me right now. I will cut the dose down and see where that takes me, but I’ve already discussed the fact that I detest relying on it every single night. In most cases, it’s a temporary prescription, but I’ve been on and off of it for the better part of eight months. I haven’t taken it consistently because I don’t want to be dependent on any medication. It is frustrating because there doesn’t seem to be an exact science to the dosing (for me). The goal was for me to be sleeping at night and have better days, but I can’t have better days if the medicine is still in my system and putting me back to sleep. In hindsight, I do think I needed that extra rest. The downside? I am worried about when I will, inevitably, fall asleep and wake up. I don’t have to be anywhere, but I do have a considerable amount of work to get done. I know it WILL get done, but for this week, at least, I have to ease up on stressing myself out and making my anxiety worse. It’s so much easier said, than done.
There’s no crystal ball to tell me how the next few weeks will pan out, but I am hoping, and praying, for better days. I’m not quite there, yet.
This was a full blown post and the written content didn’t publish. I will try to recreate it later on.
Started a post early this morning that isn’t done yet. When a migraine threatens to birth enormous puppies of agonizing torture through your skull, you need to sleep and hope it’ll help. Unfortunately, I woke up and it was worse, so I left a message for my doctor’s office to get back to me. My abortive drug is failing me, so maybe my doctor can recommend a newer one. I’m pretty fed up with her inability to return a phone call in a timely fashion. Over six weeks isn’t even remotely close to acceptable.
I will try to finish what I’m writing ASAP. I’ve probably made my decision already in terms of what to do and how to handle the issue, but occasionally I appreciate mild input.
Tonight, my major plan is to make dinner, hydrate as much as humanly possible, and go to bed before 10:30. I think that’s fair because I have so much to do and lost today because I’m sick.
It’s important for people who don’t suffer from chronic pain to understand that sick days are NOT an, “excuse”. I’ve NEVER used my illnesses as an excuse for anything. An explanation? YES.
If you’re an obsessive compulsive, Type A personality, you probably need to learn that you’ll catch more flies with honey than you will with vinegar. I don’t respond to outbursts, tantrums, and unacceptable rage behavior. I don’t respond to name-calling and accusations. Until I do, and then you’ll wish you hadn’t pushed this particular dragon. So when I say I’m sick and I’m trying to sleep, LET ME BE. My pain and suffering isn’t trying to inconvenience anyone. And if that’s how you think and you’re unable to comprehend true suffering, I strongly suggest you find yourself a good psychiatrist and therapist to help you work on your issues so you don’t dole out your tyranny over someone who is already doing the best they can. No one is implying you be a pushover, but pushing someone who is already sick enough means you’re adding to their pain. Is that REALLY who you want to be?
I hope you’re all well and doing the best you can given the circumstances. Today is day ten of my second round of quarantine. I pray this is resolved soon because this is a terribly unhealthy situation for so many of us. I’m glad to see companies stepping up to help with sanitizing and cleaning products, with producing ventilators, and all the people I know right now who are home sewing masks for their local or regional hospital staff. There are some damn good people out there doing their best.
Talk to you all soon.
If it comes at all… 😔 Yeah, I’m having a rough fucking week. I’m writing my thoughts and will be back with a full post ASAP.
**POTENTIAL TRIGGER WARNING**
I’ve reached a point in my mental health journey where I’m DONE. I’m not saying this lightly. I’m also not saying anything to seek attention. I’m just speaking. Period. It’s extremely important to be honest when discussing matters, such as this.
I’m sick of people, their snide, ignorant comments, the stigma of the uneducated, and I’m tired of all the excuses and bad behavior. I’m a human-being and I don’t want or need, “shiny, happy people” talking down to me. Who the fuck do some people think they are? 😠 At any given moment, you can be stricken, same as me. No one is immune.
In the past year, I have reached my maximum number of failed medications at around forty. Yes, you read that correctly. Forty drugs from the start of my original diagnosis, which was incorrect, until a month ago, when the final drug failed and made me wish I would just stop trying altogether. It was pointless. Perhaps I am, too.
I felt completely dead inside before starting this medication. I went into it 1000% unsure because I was preparing myself for the 50/50 possibility. This medication was an enormous risk. The failure of it made me sink. I looked around for quick sand, hoping it would swallow me up. I was, and still am, SO angry that this was other people’s “miracle medication” that gave them back some semblance of normalcy, if not restoring their lives entirely, but for me, it was yet another epic fail. If you heard me say this, you’d know I’m saying it flatly, with no inflection whatsoever. Speaking about it does not make me a “victim”; it just makes me extremely honest.
I’m SO unbelievably sick of people saying, “I’m here for you.”, or, “If I can help, just ask.” 🙄 I’m sorry, did I just roll my eyes out loud? Yeah, probably.
If you’re, “here for me”, then I would actually be seeing you or talking to you semi-regularly. If you want to help, find something within your means and do it. I am not in the correct headspace to give you an itemized list of “things that will help”.
When someone has the flu, you might bring them soup, juice, magazines, etc. Things to help them feel better or things to distract them from how awful they feel. Or maybe that’s just me. Why do people need a guide for everything they can research? For all the advanced technological access at our disposal, people never cease to amaze me with their utter laziness.
I feel ZERO comfort in reaching out, and I’m so sick of the word, “No.” when I do ask for help. I’m constantly being told I don’t know how to ask for help. I do, and asking is one dead-end at a time. I have stopped asking because I don’t have the trust to offer up anymore. I am not going around begging for people to care about me or what I’m going through. Because here’s the truth; “reaching out” is a fucking joke. If a person cares, they will reach out to you. And if they don’t, you have to understand that the majority of people have their heads shoved so far up their own ass, they can’t see a damn thing. Their world and yours do not mesh, and that’s okay. Rid yourself of those who do not come into your life on your frequency. You’re trying to grow and better yourself, and sometimes, that means growing apart.
In a world completely obsessed with social media, I decided to scale back quite a bit. By doing so, people did reach out to me, but ONLY so they could complain about things they’re going through. 🤦 It was very much a, “Are you okay?” and quickly became, “Because I have a lot to tell you.”, which made my head spin. It also made me angrier than a hornets nest after it has been kicked.
Why? Because the messages came from acquaintances, not my hardcore group of friends. I was put off by it, which might be slightly irrational, but I’m not going to sugarcoat how it made me feel.
If someone is expecting to see, “ALL of my posts” via social media, I’m mostly on Instagram these days. Some of those posts make it to Facebook, and some do not. It’s not the end of the damn world!
Whatever happened to asking a person directly, like a normal human-being? A phone call? A text? WhatsApp? Facebook Messenger? There’s more than one way to get in touch and stay in touch. Of course, you’d first have to prove you care and earn my trust to have access to my phone number for some of those methods of communication, but others are rather simple.
In the past year, I had a now former friend medication shame me. I was beyond suicidal at the time. I’m not sure if anyone knew, aside from my doctor. I wasn’t exactly shy about it, though. I was SO hurt by her comments about how I, “should stop taking that poison.” Yes, those were her exact words. If she tries to deny it, I have proof of her stupidity. I have her blocked on social media now because a REAL friend stands by you; they don’t judge.
This comment threw me for a loop. I read the initial message rule out in public, and I was incredibly insulted and hurt by it. Here I was, trusting her, and divulging something extremely painful, and she’s criticizing me. The ugliness of the comment is similar to telling a cancer patient to, “You should stop chemo. It’s poison.” 😠 No one does that though, do they? No, because they want their loved one to LIVE, to “beat cancer”. Apparently, people judge harshly when it’s medication they themselves have NEVER experienced.
Does anyone understand or realize that medication is often the difference between life and death for millions of people? I would NEVER tell someone to “Stop taking that poison.”, unless they were talking about street drugs, in which case I think we can ALL safely agree that it’s wise to get clean.
Instead of compassion, she showed me she’s an extremely ugly person, inside and out, which should have been the final nail in her coffin. Alas, when I schooled her, she didn’t apologize. Instead, she dug herself even deeper with her complete ignorance regarding depression and how it affects people. She went so far as to brag. “I’m ALWAYS HAPPY.”, she declared. Having written a character reference to a judge on her behalf, as she fought for sole custody of her youngest child, I beg to fucking differ, but I guess she’s not going to ever speak the truth because she refuses to see herself clearly. Denial is not just a river in Egypt. 😒
I don’t care what a friend comes to me with, they will NEVER hear me say, “I don’t know anything about it.” Let’s say I didn’t. On occasion it happens, but it takes less than ten minutes to educate yourself. That’s WHY we utilize search engines. Part of growth means constantly educating yourself. At least it does where I come from.
How is ANYONE over the age of twenty-five going through daily life without ANY knowledge about mental health? Please, elaborate. It’s 2019, and there are ZERO excuses for that level of ignorance. It’s inexcusable.
“Stop taking that poison.” Um, you admitted repeatedly that you guzzle down bottles of wine because you’re stressed, sad, not to mention, in compete denial of your true self, but medication is poison? Okay, wise one. 🙄 And by all means, FUCK OFF with your low level thought process. You’re not, “enlightened”; you’re fake and a complete fraud. I’m so glad to be rid of your drama, self-absorbed attitude, and your negativity.
Having me as a friend is something you should respect and appreciate because I don’t play games. You screw with me and my loyalty will become loyalty to myself, NOT to you.
Another now former friend was self-harming and as a result, extremely horrible things happened. I will not disclose the deeply private pain shared with me because I’m better than that. Yes, I’m angry as hell and would cheerfully share her name, address, and phone number, but again; I AM BETTER THAN THAT.
I proactively encouraged her to seek help. I was constantly consulted for advice regarding doctors, therapists, and medication. I could go back into my phone log app and count EVERY single phone call I took when I should have been sleeping, because apparently MY well-being was never more important than her incessant dialing.
I called various mental health clinics (from across the country) to see if they took her insurance. That, my dear readers, is a TRUE friend. I’ve gotta say, no one has EVER tried to help me like that, and truthfully, I’m smart enough not to allow myself to get to that point of no return.
Everything changed after all my guidance, though. I probably saved her life, but she thinks her part-time boyfriend is, and I quote, “Superman”. 🙄 You can think like that when you’re in single digits, but if you’re over twenty-five and have divulged an extremely abusive, manipulative, narcissistic relationship, one I witnessed in person, but you stay, then maybe, just maybe, you’re getting what you deserve because you aren’t smart enough to see things clearly, and you wrongly assume that a smart friend saying something about it automatically means that woman is jealous. Unless you live next door to a flagship Ulta, believe me when I say I’d NEVER be jealous of anything, and lately, even Ulta has lost its shine for me.
If you’re suffering, but have time to complain about how, “I gained fifteen pounds in a month.” because of depression medication, then maybe you need to sort out your priorities. I offered a list of medications where weight gain wasn’t a side effect. How did it turn out? I don’t fucking know. When a friend begs for your time and then blows you off, it’s perfectly acceptable to be silent until they apologize. It was her responsibility to make sure she didn’t permanently damage or destroy a long-term friendship. She didn’t make an effort whatsoever, though. That was her choice. Instead, she took the time one random Monday morning to “unfriend me” over a year later. Precisely who is the immature one here? I actually laughed. No one has to follow me on social media, and a real friend doesn’t announce it after years of calling you at all hours and pretending to love you like a sister. I decided this person was SO far gone that I wasn’t going to engage in the attention-seeking behavior they crave because she desperately needs this attention in order to feel “whole”. Except, the feeling is fleeting, and she will keep doing whatever it takes to get more. I should feel bad for her, but once I’m done, I’m DONE. I don’t give people the opportunity to come back, either. Friendship is a gift and a choice. If you throw it away, that’s on you.
When I started taking medication for depression, I gained over 250 pounds in two years. It wasn’t from food, it was a side effect of drugs forced upon me, because hospitalization was always a threat if you didn’t take the medication prescribed to you. I underwent a lot of blood tests to show where my medication levels were and they NEVER reached “therapeutic levels”, mostly because they weren’t the correct medications for what I truly suffer from. I’m under 5.4″ and I’m a former gymnast. Doctors didn’t care about the weight gain, they just kept pushing drugs at me. Some of these drugs will threaten everything you hold dear before you finally put a stop to it. But now, EVERYTHING is blamed on your weight. Sore throat? You should lose weight. Ear infection? Well, you need to lose weight. Migraines? Lose weight. Unexplainable chronic pain from head to toe? I was told I should get down to “sixty pounds” to be pain free. Yeah, I’d also be dead, but the doctor repeated it three times because I gave him the opportunity to self correct his words. He just kept repeating it, like he was the smartest person in the world. I should have punched him in the throat.
Over the past eleven years, I’ve gotten closer to my goal weight. I KNOW I can achieve the final goals and have lifelong results/benefits, but I’m sick of women being negative over five, ten, fifteen, or twenty-five pounds. I understand it being frustrating, but calling yourself, “fat” is ugly and unhealthy for the mind. When people constantly do it in front of me, I automatically wonder what they say about me behind my back. Unlike many people, I don’t judge my friends based on looks, age, skin color, country of origin, education level, or weight. I’m selective; not petty. I treat my friends the same way I’d want them to treat me, and rarely am I treated as I deserve.
When I hear your self-talk and criticism, I question what you say to and about me. I have about sixty pounds to go. It seems like a lot more on a smaller frame, but whenever I hear, “You REALLY have SUCH a beautiful face.”, it’s actually a backhanded comment about how I’d be so much prettier if I was a size zero. Zero isn’t a fucking size, not unless you’re a supermodel and play into that bullshit. Even newborns aren’t born a size zero! My NYC hair stylist disagrees with this, and once explained that my face shape (Which is oval.) is the perfect shape for a woman to have because it means every haircut will look good with her facial features. I don’t know that I agree with him, but he’s never tried to bullshit me. He’s also the only person I can trust to take me from my natural hair color to blonde in less than six hours.
However, my main point is that you aren’t going to physically be 13, 14, 15, or 16 years old for the rest of your life. Jeez, I thought I was “fat” then, and I wasn’t. At all. Our bodies change. Our hormones change. We all age differently. But I’m not okay with hideous negativity and societal pressures. And I’m REALLY not okay with “friends” who have, “first world problems”.
Your health is your wealth. Weight should NOT be what you’re focused on when you REALLY need the medication keeping you alive. It can be a goal when you’re feeling stable, not before.
I called my doctor late last month, wondering if he’d noticed that I’d cancelled on him. I legitimately do NOT cancel or miss appointments, even when I would much prefer to remove my eyeballs first. When he called me back, he said he trusts me to know when I need to come in and when I don’t. So, he clearly didn’t hear what I was saying, either. I won’t lie; I didn’t call him back because I was annoyed. I could easily slip back into not seeing someone for a year, or three. I told him that at my most recent appointment. Not only did he give me extra time, which he didn’t have to do, but he was in agreement with me about severing ties with a therapist who wasted a year of my life by being useless, and that’s me being civil. I’ve grown and I’ve changed, but she was not a part of any of that growth. I’m disgusted beyond words by her treatment of me.
I cancelled my final appointment with her because I knew I’d walk in, “hot”, and that means I knew my temper would flare into flames. I knew she could not accept the truth, so I decided that I don’t require closure in this particular matter. I decided that my sanity was more important than telling her what a useless sack of skin she is. I decided that insulting her and telling her how much her, “help” did NOT help, wasn’t worth me losing my temper. However, her one star rating on Healthgrades makes me feel better.
Will I go back to therapy? I don’t know. My doctor is going to do a deep search of all hospital employees and see who knows who. He knows if he screws up a third time, I’ll paint his office hot pink while he’s on vacation.
Have I reached out to anyone about what I’m going through? No. After recounting my father’s fifteen year battle with cancer to my best friend, who was unaware of all I’d gone through, I found myself in tears. I’m not generally an emotional person, meaning I don’t cry, unless it’s something serious, and even then, I might not. My reactions to things that bother and upset most people are not the reaction anyone is looking for, so I keep my mouth shut. And yet, I’ve written over three thousand words here, explaining myself when I don’t owe anyone an explanation.
Those of you who reach out with messages and comments, and thank me for writing things like this mean a LOT to me. If my words help you confront your pain, then that’s a positive takeaway.
Ultimately, mental health is a personal, painful journey. It’s a road often taken solo, for obvious reasons. Support may come easy for many of you, but for me? Well, I’m lucky to be a force to be reckoned with. It was my mother’s wish for me, and my strength is deeply engrained in who I am. Sometimes, I just need to remind myself who the fuck I am and where I come from. Hopefully, someone reading this will understand EVERY word.
Also, we don’t lose friends. We simply learn who our TRUE friends really are.
Copyright © 2019 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED. Written work by author may not be shared or posted anywhere without express written consent from the author. Excerpts and quotes from the material also require consent. This authors’ work and personal photos are protected under U.S. and International copyright laws. Further protection is under the Digital Millennium Copyright Act. ALL RIGHTS RESERVED.
“I didn’t expect to recover from my second operation but since I did, I consider that I’m living on borrowed time. Every day that dawns is a gift to me and I take it in that way. I accept it gratefully without looking beyond it. I completely forget my physical suffering and all the unpleasantness of my present condition and I think only of the joy of seeing the sun rise once more and of being able to work a little bit, even under difficult conditions.” ―Henri Matisse
While battling for proper diagnoses, finding the correct treatment method(s) is crucial to your overall well-being. For the better part of this year, I’ve had different people attempt to over-ride my intuition. I don’t like that. It is a surefire way to piss me off.
I don’t like being told what to do regarding my health, or anything else. It annoys me that I listened to their words and considered anything I was not completely committed to for even a minute. It upsets me that I didn’t fiercely hit back immediately with my thoughts on each subject. I, for some great, unknown reason, kept my mouth shut. Keeping my mouth shut is the polar opposite of who I am in almost all instances. Anyone who knows me knows I’m not known for biting my tongue.
Maybe it was the knowledge that I would have to move forward with someone new, and I need these people to maintain my medication, for now? I’m not sure, but that’s one solid reason to remain silent, even if you hate yourself in the process. I’m trying to survive in a bad situation and not come out any worse than I already am. I understand survival methods, we all do to some extent, but it’s not a good enough excuse for being silent.
Maybe I was hoping these physicians were “having a bad day” and didn’t actually mean me harm. However, that is precisely what occurred, and it’s not acceptable. No one should have to feel trapped in situations like this. I don’t like playing games. I don’t like the bullshit involved, and I like it even less when “healthcare professionals” are the ones slinging the shit. The people I am most receptive to are genuine. I can tell precisely who means well and who is merely repeating dialogue from some internal script. If you’re going to spout nonsense, I am not going to be receptive to it, or you.
When a doctor presents an option, it is genuinely okay to disagree with the methodology and/or their thought process. It is okay to have questions. You may be desperate as hell for pain relief (I am, but I have limits and boundaries, as should we all.), but you do not have to say “Yes.” when everything within you is saying/screaming “NO! Don’t do this. This is not the answer.” If other people have said “I’d like for you to try this.”, it is also okay to turn around and say, “You first. If you’re SO adamant for me to say something should be tried/done, then you go ahead of me. I want to see you cope with the pain I cope with and endure bullshit procedures and guinea pig testing.” You are not a “bad patient” for asking questions, for challenging the system, or for saying “No.” It is okay to decline medication you already know is not helpful. It is okay to ask a physician if you can try a previous treatment method that did help. Ultimately, if you are not being true to yourself, you have to put your foot down somewhere. I did. I decided that if my intuition was screaming at me not to do something, there was probably a reason for it.
What did I not do this summer? Trigger Point Injections. Why? For starters, intuition. My doctor never explained them to me when they were presented as an option, thus leaving me to be an educated patient and do the research solo, only to come away with a “What the fuck?!” moment as I counted the twenty-ish injection sites that would go into various areas in my neck and back. He only said “I’d like to try this to help relieve the tension in your neck.”, and that was the end of the discussion. He did, however, say to call if I had any questions, but subsequently I was handed an appointment and left the office beyond disheartened, and more than a little angry.
I went from being taken seriously to no longer being an “interesting patient”, so my feelings of anger and frustration are valid. That direct quote is in his notes from my first visit, “Thank you for this most interesting patient.” If I had a more established relationship with him, I might very well have kicked him (accidentally, on purpose) for how he treated me. Needless to say, this did not help foster trust moving forward. I do not think I will be returning to him. I am already discussing overriding my doctor’s office via the insurance company in order to get a second opinion. If you didn’t think you could do this, you can. Fact: Not all doctors are correct in their assessments.
Once I was fully educated on what the TPIs entailed, I called his office a week before my scheduled appointment and asked him to call me back. Minutes later, a nurse from the office called, asking if I “really needed to speak with the doctor or could she help me”. I wish you all could have seen my face in that moment, because it wasn’t a good one. I wanted to tell her something incredibly unkind, and in the future, I will not speak with minions. That’s a new rule I have chosen to implement. I’m tired of what I say being twisted and/or lost in translation.
Instead of actually listening to what I was saying and hearing me out, this nurse was rude, patronizing, disrespectful, and when I said I’d like to table the injections and go back to medication, I was told he wouldn’t prescribe it “because it’s an opioid.” You would think I had just asked for pure morphine to be injected into my veins daily the way she spoke to me. No, I asked for Ultram (that’s Tramadol, for those of you who have never heard of it.), which, having taken it in the past, I assure you is a safer form of pain relief. In all the years I was on it, never was I addicted, chasing a high, or doing anything irresponsible. If it could take my pain down from a high level to a tolerable three or four, that meant it was working. With this particular medication I was never asked to show identification when picking it up at the pharmacy, nor was it considered a “controlled substance”. I did not require a paper prescription when I needed a refill. It could easily be called into the pharmacy of my choice with no issue, and I never caught drama when I picked it up each month. I only had to see my doctor once or twice a year to discuss my progress. Apparently, it is now a scheduled drug. I did not know this because I don’t spend my days perusing lists of controlled substances. In order to be approved to take it, I was told I’d have to sign a “pain contract” and come in monthly (I assume for more drug testing. I’ve actually spoken with my insurance company about how often they are abusing lab work because of this methodology. Unless a physician is suspicious of you not being honest about illicit drug use, there is no need to screen them every single time they come into the office. That is thousands of dollars being billed for no reason.). However, when my doctor called me back he said, since he cannot find the source of my pain, that injections are all he can offer me at this time. He said he was not comfortable prescribing medication to me “since he cannot find a pain source”. He was open to discussing things further, but said he understood my hesitation regarding the injections. I have not called him back because I am legitimately angry that finding the source of the pain I suffer from daily was something he was not interested in doing. Why do people become doctors? I’ve met at least a dozen waitresses who were far superior at “helping people” than the average doctor. I was mortified to learn he will be presenting at the International Pain Summit in Boston this Fall.
As a result, I am not going to allow myself to be dictated to any longer. I am researching high quality CBD oils and plan on ordering one as soon as possible in my attempt to find some natural pain relief. It’s not a cure, but it’s a direction. I don’t want to be under the care of someone who does not look deeper for a patient and who denounces my pain as something that can be fixed via Cognitive Behavioral Therapy and/or Biofeedback. These things might work for some people, and good for them if it helps, but I can only deal with one set of issues at a time and CBT is not on the list of “how Lisa would like to spend her time”. I have so many issues to deal with and if I can’t dedicate 100% of myself, then it’s a highly pointless option. I will keep pushing to find out the source of my pain, because if my neck is miraculously “healed” (despite the arthritis diagnosis), yet feels like someone is jamming hot pokers into it 24/7, and my shoulder blades feel like they’re going to find a way to spontaneously detach themselves from my body on a constant basis, then clearly something is wrong SOMEWHERE and it needs to be located. I just have to find the right doctor who is willing to help.
I had to argue to get x-rays approved. I had to fight to get an MRI approved, and now, I have to fight to get doctors to take my pain seriously. I’m sick of it. I am sick of their attitudes, insinuations, accusations, ignorance, and judgment. Last time I checked, that’s not how any physician should behave. I have all the “patients’ rights” pamphlets telling me I am “entitled to have my pain taken seriously and I’m entitled to have it properly medicated and treated.” This statement is in every office I go to, and yet, I feel like my doctor tossed me out on the street for refusing the injections. That isn’t far from the truth, either, because, while under the guise of being a “spine specialist”, he is actually an anesthesiologist. He might have a sub-specialty, but overall, injections are his main goal. So while he was impressed by my bones and their anti-aging quality (I was completely dumbfounded over that. I suppose the bones match the face that is still carded for cough medicine.), the only option he is choosing to offer is injections. A friend told me I should be offered anything and everything at his disposal; not just injections and nothing else. She was horrified, and that added to my disgust.
Someone actually said to me, “If you’re truly in pain, you’ll try anything.” First of all, fuck you. Second of all, needles into and around my spine are not the answer. It’s actually quite dangerous. How is anesthesia, that will wear off within an hour or two, the healthier alternative? Who the hell wants to have injections performed every two weeks? Initially, he told me they’d last “up to eight weeks”. I spoke with people who have tried this particular route and they all told me I did the right thing by saying no. They proceeded to share their stories, most of which centered around the fact that they received zero pain relief from these injections. Many people told me it caused their body to flare-up, and left them down and unable to move much for weeks following the injections. Some people kept this routine up for YEARS, some for over a decade, all in the hopes that one day, it would help. In my mind, this is abuse of power at pain management centers. They push injections and refuse you pain medication unless they exhaust all other options first. I find it incredibly irresponsible.
I can’t see into the brains, necks, or spines of neurology/neurosurgical patients, but I know when I go to my doctors’ office and the place is PACKED (as in, with all the seating they have, and there’s a lot, sometimes you have to stand in the hallway or take a walk and come back.), people are not there because they enjoy it. Each one is seeking answers. Many people are there for a post-op appointment, for medication changes, follow-ups, or something far more severe, as there are many Multiple Sclerosis patients that come into the office. My heart breaks for each of them, because I understand. I see their faces, I look into their eyes, and I see their pain and can feel it in the air. I’m there for migraines, and you’d never know it because apparently I don’t walk around looking like a migraine patient (Let’s not get me started on #MigrainePose because that will, inevitably, be a separate conversation all by its lonesome. I am sure many of you have seen my posts clapping back against it on various social media outlets. I have NOT been shy about my feelings.). I have no clue what a migraine patient is supposed to look like, but I have zero tolerance for being judged based solely on my face. It’s tiresome, and yet, it happens all the time. My primary care doctor, without discussing my health issues with me, wrote a letter and declared me “perfectly healthy”. The woman has only met with me twice. A responsible doctor would have called me and asked what’s going on with my health, or made time to see me. Having anyone declare me “perfectly healthy” is incredibly disturbing, and it reinforces why I need a new doctor. She may be great if you only see her once a year, but G-d help you if you’re a complicated patient. The reviews I plan to write on every medical website she’s listed on should spread like wildfire from here back to where she went to medical school in Spain! That’s the current level of my wrath.
Like many people, there are certain levels of pain I can block out. It’s something we all learn to do over time, but once I reach my boiling point, there’s no way I can look or behave “normally”, whatever the hell that means. I have had to discretely take medication for the beginning of a migraine in public so many times, I have lost count. I’ve had friends and family say they had no idea I was taking medication at all because I didn’t discuss it. I never realized I tend to open a bottle inside my purse, take out what I need, and quickly take the medication, without a discussion about whatever it is I am taking at any given moment. Could be Aleve, could be a muscle relaxer, could be a beta-blocker, one never knows. Sometimes I excuse myself and take medication in private. People often assume I am not in any pain because I “look just fine”. Looks can be deceiving. I was recently told “You look great!”, and I simply didn’t view it as a compliment. Anyone who says those things, without thinking about how I will react to being told I “look just fine” or “look great” are the people who aren’t with me at 4:30 in the morning when I cannot sleep and I desperately want the pain to end. They’re not by my side during the never-ending days when every solitary sound is like a jackhammer to my skull, or feels like a train is using my head as its personal tunnel. They aren’t with me when my physical pain tolerance makes getting out of bed torturous. They’re not with me when I have to crawl from my bed to the bathroom, wanting to cry from how awful it is to attempt movement. They’re not with me when I am on day five of a flare-up that has cost me days of my life, time that should have been spent focused on other things. Leave it to some of the more callous people in my life to make remarks and make me feel bad about my limitations. Fact: It is NOT okay to tell someone one thing and then turn around and belittle and/or threaten them. It is NOT okay to denounce my suffering and pretend I am not going through hell simply because you’ve had a bad day and I’m the only target in sight for your rage. I might not always voice it, but this is a battle and it is a difficult one. And it REALLY isn’t right to have someone tell you “It’s good that they dropped the dose of your medicine. You don’t want to be on that stuff for the rest of your life. It’s like handcuffs.” One, I didn’t ask for this person’s opinion and two, that’s THEIR issue, it is not mine.
I would not take medication of any sort unless it was medically necessary. When medication is cut by 50% without a physician making sure that’s a safe thing to do, that is called medical malpractice. I am actively seeking out information regarding my rights because I cannot allow this to slide. To recently learn that this doctor chose to go behind my back and say there’s nothing wrong with me, and use the phrase “perfectly healthy” nearly sent me into a rage of mass proportions. My chart clearly states my diagnoses. The first three are severe. For her to actually write a letter and say “There’s nothing wrong with this patient.” is exceptionally low. Even now, still experiencing symptoms of stroke and seizures, worrying that my heart or kidneys will go into failure, I MUST advocate for myself and for anyone else this particular doctor might harm. If you’re going to take the Hippocratic Oath, you had better know what the hell you’re doing with a patient’s life.
The shining light in all of this was running into one of my former doctors while I was in a medical building at the end of June. It was one of those moments where you know it happened for a reason. I do not believe in coincidences. We crossed paths and it was an incredibly symbolic moment I did not expect to happen. It’s not often someone is genuinely happy to see me, but he was, and it was touching to me because I don’t ever assume people will remember me. We talked for a few minutes and, to make a long story short, he pulled some strings and got me in where he currently works, so he is officially my doctor once again. Without his help, I spent eight months jumping through hoops like a tiger in a circus act. In less than two weeks, he handled the situation and kept his word. I couldn’t be more grateful. The statue in his honor might have to be built sooner rather than later. 😉
I am still trying to figure out how I feel about being his patient again, aside from “safe”. I thought, maybe, it was taking the safe route, and/or, maybe taking a huge step back, but ultimately I feel like this was meant to be. I even discussed this with him and he understood my perspective.
When someone actually cares about their patients, devotes time to them, knows how to pick up a phone and return a call, and is the same person in and out of the office (He did NOT have to pull strings for me, nor did he have to stop and chat on his own time. I’m insanely grateful for what he did, and he knows it.), it reinforces my respect. I am not comfortable with the status quo of the medical community at large. I only like and respect TWO doctors out of all the people who are supposed to be treating me. These two physicians know how to listen. They don’t interrupt me. They are focused, which is incredibly helpful to me because right now, my focus is shot to shit. I have the attention span of a gnat, and that’s the opposite of how I am in my daily life. I respect a doctor who discusses my treatment plan with me, as opposed to issuing down a command/ultimatum. After all, I’m the patient and it’s my body and mind we’re talking about. If a physician isn’t involving you in your treatment plan(s), that’s a HUGE red flag.
I refuse to sit and be afraid to speak up, speak out, and/or confront a doctor. After an appointment in July, the medication issue, and finding out about this letter, I am left with the disconcerting task of confronting my Internist. I don’t know if she was thrown under the bus by another doctor and the medical director of her office (I wouldn’t be shocked if she was, but the letter she wrote pretty much sealed her fate with me.), or if she truly “went rogue”, as they claimed. Regardless, she did something dangerous and stupid, and risked my health in such a way that I had to contact another doctor and move an appointment up because I knew I wasn’t okay, and I didn’t think waiting was an option. I left the doctor a message and he personally called me back and gave me three different time-slots he had available (Yes, the doctor I ran into.). When a doctor says “If you called me from the parking lot, I would still make time to see you.”, that’s important, because so many are booked up months in advance and would happily hand your care over to a physician’s assistant or nurse practitioner. I agreed to see my Internist’s NP, but after going over her words and actions, especially as I waited for serious test results and only got someone to call me back after two plus weeks of calling the office, I am not pleased with the care I am receiving. It took all that additional time to finally get a referral to a rheumatologist, due to my test results which clearly shows inflammation within the body, and to receive an optometry referral. It took them nearly two full months to send me a letter and let me know that the eye tests I had done were negative. I knew this constant lapse in care was becoming normal when the nurse I spoke with said “They didn’t call you? They didn’t send a letter?”, after my umpteenth call regarding my inflammatory panels, and she sounded incredibly annoyed that neither had been done, because “that’s proper protocol”. I talk to this woman often enough that she knows me by name and is always sweet and kind to me. She promised me I’d receive a call by the end of the business day. It took an additional four days for this to be cleared up. And sadly, the nurse I spoke with was shocked, again, that I know how to read the results of complicated blood work. I kept calling to ensure I’d get the referral, I didn’t need her to clarify anything beyond that.
When you go into this particular office there are countless numbers of people back there. It’s not like they don’t have extensive staff on site. So someplace, somewhere, the ball has been dropped and is probably close to the Earth’s core by now. But as a patient, it’s not MY job to be making a million phone calls to get a fifteen second voice mail message in response and have them log that into the system as a returned phone call. My insurance company warned me back in March that I would probably spend this first year holding doctors accountable and making a lot of phone calls, but the fact that I also got a case manager to assist me during all of this insanity is, possibly, the reason my doctor is pulling some of this crap.
Doctors are abusing their power as they see fit. They are abandoning their patients as they see fit. They are, without question, DOING HARM. It falls upon the strong, the smart, and the fearless to stand up for patient rights and speak out about the shady shit doctors are doing, under the guise of following procedure. If you can’t find something in your medical records, especially since everything is online these days, something that has apparently been said, or you were not privy to a conversation or decision, or, like me, a letter, SPEAK NOW. Call your insurance company and file an internal grievance. Know your rights. Follow your intuition. Make sure medical decisions fully involve you, the patient, and if they don’t, and you don’t feel comfortable with something or someone, make your voice heard. Because if you don’t, they win.
I have affiliated myself with 50 State Network to advocate within the state of Massachusetts, and beyond. I strongly suspect it will inevitably become more. When people hear me speak in public, they are blown away. I generally don’t think much about it. I could be in front of twenty people or twenty thousand, and I would still speak the same way. I will still be strong, articulate, witty, sarcastic, and real. I make direct eye contact that tends to make people uncomfortable, but for me, it’s all about being heard.
As an advocate, I will be having discussions with politicians all across the board to make sure pain patients and people with invisible illnesses have a strong voice supporting their needs. If you knew how much I despise politicians, you would all send me gift baskets now, and lots of Dr. Bronner’s liquid soap (Peppermint, Lavender, and Almond are my faves.) because I will need to shower four times a day to keep away the reptile reaction I have when surrounded by politicians, many of whom are lawyers. All jokes aside, I am nothing if not a powerful voice and I’m not afraid to use it. This is a healthy outlet and it motivates me to do something I would never have chosen to do on my own. For the handful of people who encouraged this, supported it, and told me I could do it, I thank each of you. It’s amazing, sometimes, how people get to know you and immediately see a pillar of strength, instead of someone who is still, after all this time, searching, hoping, praying, and trying to remain positive, even when her head is full of negative thoughts much of the time.
I have been living in so much darkness, struggling daily for every movement, for cohesive thoughts, for the real me to shine through at all times. I do not like failing at anything. When people compliment me or commend me for a job well done, I stare at them in disbelief. For someone who is not a Type A personality, I am always taken aback by compliments or any positive recognition. In essence, it’s sad, but on the flip side, I realize it means I’m not egotistical. Hooray for the bulldogs! (If you got that reference, I hope it made you laugh.)
The remainder of the year into next (Believe it or not, I actually have a doctor’s appointment on New Year’s Eve. It was the only available appointment for 2018. I was mortified, and I still might go to someone else, as opposed to yet another person affiliated with my “doctor” and her office. It’s not like this person is the only optometrist in the state that takes my insurance!) is going to involve a lot of doctor’s appointments, and several treatments/in-office procedures, few of which I can say I am looking forward to. These are not fun experiences.
I feel terrible, guilty, ashamed, and much like a failure for not being able to write as often as I once did. I’ve watched my numbers slip dramatically this past year and a half, and I feel like I am letting my readers down in some way. I apologize. I feel grateful that many of you have followed me on Instagram and get a sharper glimpse of me as a person on a daily basis, and I am incredibly lucky to call many of you my friends in real life. That means so much to me, especially when I have bad days, which is mostly every day, and can’t focus on my intended goals.
I never dreamed or imagined I could ever, or would ever, be sick like this, permanently, and lose out on amazing opportunities, but most of all, lose out on my life. I’ve suffered for so long, I don’t even know what a normal life looks like anymore. I say that not to gain attention, sympathy, or garner pity, but to share my feelings.
I remember, at the very beginning of all of this, when my mother confessed to a friend that everything she had hoped, dreamed, imagined, and wanted for me was being taken away. It was very early at that time, I didn’t even have the additional diagnosis of Fibromyalgia hanging over me, but I felt so hurt; overhearing how my being sick was somehow this huge disappointment; for her. I felt incredibly betrayed by what she was saying. Eventually, I tried to convey how much I didn’t want the things she was talking about, but inevitably, I decided those dreams would have to skip over me and land on the next generation.
Here I am, all these years later, still sick, my mother has been gone slightly over ten years, and I simply don’t know if there will be a “next generation”. I have a pain in the ass relative who is overly obsessed with my ovaries (I could not make this up if I tried.), constantly sending me articles about how I need to “get a move on”. Coming from someone who does not want children and eschews marriage, I find it incredibly despicable for her to be shoving this crap down my throat on a semi-regular basis. I have kept my mouth shut every single time she’s pushed and pushed at me, and I swear it’s the miles between us, and nothing else, which keeps me from strangling her to death. She does not seem to realize it is hurtful and insulting. She does not seem to understand that I have boundaries. She simply thinks everything is open for discussion, at any time, simply because it’s what she wants to discuss. I can’t help but find it rude and degrading. I’ve talked about it with a few other women and each one agreed that it was disrespectful, rude, and unnecessary, not to mention heartless as hell.
A few months ago, I had the sweetest lady tell me I am going to be an amazing wife and mother. She raved about how smart, talented, and pretty I am. She had just met me, but she gave me the same level of comfort as though my own Grandmother was speaking. It made me cry that day, and it’s making me cry again now.
Sometimes, a stranger sees us with more clarity than we could ever hope to see with our own eyes. And some days, you have to know in your heart that you were put in a person’s path for a reason. Not because you needed to hear things you already know, but because you needed to hear someone else say it with conviction.
I don’t think people understand exactly how invisible illnesses, especially those that reach a chronic stage, are incredibly isolating. At first, it’s friends and family, people you thought would stand by you no matter what, and suddenly, you can be in a place with over 30,000 people around you, and still feel like no else in the world is present. You still feel like a solitary creature. You still feel every ugly thought and feeling rise to the surface, your pain edged against every part of you like the worst kind of knife, even as you’re smiling and enjoying an amazing experience. A lot of people tell me they always say “I’m okay.”, because they don’t want to be perceived as complaining. I NEVER say I’m okay. My first instinct isn’t to lie or reply the way the majority of the world does. You could be a Barista taking my coffee order and if you ask how I’m doing, I won’t give you a boiler-plate response. I know this jolts people, but for me, it’s important not to be dishonest. A lot of people don’t understand this practice, and that’s okay. They aren’t me and they don’t have to live with my thoughts.
Authenticity and honesty are crucial to me, and even more crucial to how I live my life. Anytime either is placed into question, whether the person knows me or not, it is the quickest way to get me to go from zero to bitch in less than a second. There’s no dialing it down or attempting to pull back once an accusation is made because I immediately see red. If you know me, you know I don’t wear the color red. Occasionally I’ll wear a shade of red nail polish or a red lip color, but it’s so infrequent that it’s not usually an indicator of anything. But if I walk into a room wearing a red shirt; that’s not a good sign. Almost everything I own is a shade of blue, grey/silver, black, white, or purple. It took me years to realize my color choices are intentional. They are likely indicative of my aura color, but they’re also the colors I am most drawn to in all things. Red is a warning, and it’s something I’ve become highly aware of over the past six years. An old friend once told me I’m “really aggressive” when I walk into a room wearing red and black. Overall, at this stage any way, I’d say I’m “really aggressive” if you cross a boundary with me or I don’t trust you. I don’t believe in offering blind faith.
So as I sit here in excruciating pain, unable to sleep, filled with doubt and worry, sick to death from stress, dealing with a brutal migraine, I hope with my whole heart someplace, somewhere, someone is looking out for me and looking over me. I’m following my intuition and trying to allow it to guide me, but some days are a hell of a lot harder than others. 😦
Am I okay? No. Maybe someday, my answer will be different.
(If you need me, I’ll be at my doctor’s office. Pretty soon they’re going to have to engrave my name on one of the chairs. When a woman schedules a doctor’s appointment on her birthday, that’s a testament to how bad she’s doing. Thankfully, I’m in good hands.)
copyright © 2018 by Lisa Marino & Blackbird Serenity, LLC. Further protected under the Digital Millennium copyright act. ALL RIGHTS RESERVED.
I hope everyone had a restful weekend. I’d like to welcome the new subscribers who have come on board in the last few weeks. 🙂 I’m glad you find me interesting enough to follow me on my journey. Please feel free to message me and/or leave comments. I always reply.
Today was hard for me. It was the anniversary of my mother’s funeral. I still have her eulogy typed up, and every so often I go back and read it. Mostly to remind myself where I was in that moment and how far I have come since that day.
I tried hard not to think about it, but by six o’clock in the evening my stomach became ill and my current nine day long migraine intensified. The only thing I could do was turn off my computer, set it aside, take my current migraine medication, which isn’t much, and lie down with a cold pillow over my head. If you know me, you know how much I LOATHE being sick. Suffering from a long list of chronic illnesses doesn’t mean I enjoy it. These are things I never asked for and would not wish upon anyone else. I do my best to navigate each of these things, but I also have to prioritize my health as opposed to forcing it to the back burner. I neglected aspects of myself for a long time and as a result, I am sicker today than I ever was before.
I know constantly having to fight for my rights, advocate for my health and proper treatment, and always feel like there is no certainty, just battles, isn’t helping matters. People often read my posts and get offended when I say “I don’t have much of a support system.” I wasn’t aware I was invalidating people who are, predominantly, quite vacant in my life. If all you do is call me when it suits you, text on occasion, message me here and there, and ask me questions about things of no real importance to me, I don’t consider you a part of my daily “support system”. If you feel invalidated by that statement, the issue lies with you, not with me. There are plenty of people who I have offered support to and have received the equivalent of a slap in the face in response, so excuse me if I don’t deem these people “supportive”. My assessment is quite accurate.
Standing by someone while they sort through their health and unhappy situations means you don’t ever intentionally trigger their anxiety, anger, or emotional suffering. If you never say a kind thing to another person, you certainly aren’t bettering their life in any way.
I was raised by two women, my mother and Grandmother. My Grandmother would always turn to my brother and I and say “If you don’t have anything nice to say, don’t say anything at all.” My mother’s version was different. She always encouraged me to speak my truth. I was five when she told me “The truth is more respected than dishonesty. If someone chooses not to believe the truth, and they try to discredit you, at least you know you’ve told the truth, regardless of what they are choosing to believe.” Those were profound words for a young girl, but she always encouraged me to use my voice, and not allow others to attempt to rob that power from me. Having lost both of them, I know they are each in the unique position of being able to see how people treat me, to hear the conversations and comments, and to know precisely who is and is not doing their best. I am far from perfect, but I am doing the best I can.
My Grandmother was such a strong believer in family. After she passed away, I quickly saw through all the things she tried to keep in tact. Her belief in the “family unit” stemmed from how she was raised, but in truth, there was no “family” at all. There was this immense illusion. My mothers’ side of the family chooses to have nothing to do with me, and the feelings I have in regard to their behavior are things I don’t always verbalize. I try not to think about it too much because I am justified in my anger. I have zero respect for a lack of decency, lack of common sense, and basic humanity. The same is true for my fathers’ family. I witnessed so much growing up, always wondering why my Grandmother held tight to the idea of this “family” dynamic. I watched how it became nothing and continued to become less and less the day of her funeral. Losing both of my parents put everything into perspective for me.
I don’t doubt that certain people have feelings for me, but do I believe those are feelings of love? Rarely. I know my brother loves me in his own way. He steps up at times when I am not expecting it. I know that other family members love me in their own way, too, but I often feel excluded and dismissed. I often feel set aside as a person with no thoughts, no feelings, and no validity. If one more person has the audacity to say “Are you ever positive about anything?”, I will probably lose my temper.
I have never had anyone who truly knows me or anyone who follows my work deem me a “negative person”. I am my most authentic self when I am writing and speaking. I am the same way in every aspect of my life. And yet, I’ve noticed snide remarks of late that question my genuine authenticity. I have walked away before saying “Go fuck yourself.”, because I will not engage with someone who is intentionally looking for a fight and/or being an asshole. I have walked away before saying “You’re clearly projecting if you’re questioning MY authenticity. I question YOURS, but I’m classy enough to keep my mouth shut.”
Love, loyalty, authenticity, and all my friendships and relationships are some of the most important things in my life. In this, I am a supreme perfectionist who is honest about her imperfections. Someone told me last week “I can see that authenticity is very important to you, and I respect that.” When one person chooses not to see it, and everyone else sees it immediately, it is much easier to cope with one person trying to take a pot shot, as opposed to thousands of people viewing you negatively.
I am going through a lot, but I’m still the same person. I am working on myself, and I am doing the best I can. If you don’t know every single thing in my heart, you have zero right to judge me.
This week I move on to other battles. I am hoping for some downtime at some point to be able to find a sense of calm. I have a consult with a new neurologist next week, so I am hoping there’s a positive outcome there, especially since I’ve waited nearly six months to be seen. Fingers crossed for some good news.
Wishing you all a wonderful week ahead… Li
copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.