Tough Times Calls For All Kinds Of Things

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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.

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I’d Frown, But…

I’d frown, but I have no wrinkles and don’t want to age prematurely. 😉

I thought I’d say hello and let you all know I’m semi-alive. I’ve been working on a piece these past few weeks, but have had a lot of setbacks that have kept me at a 70/30 percentage in terms of completing projects. It’s not the topic or anything other than how awful I’ve been feeling. It’s hard to sum it all up, but I think the upcoming piece will shed a lot of light on my current mental state and hopefully, someone will gain something out of knowing their thoughts are not solo thoughts; others share them, in different ways.

The summer has seemingly blown by. Normally, I look forward to Fall and even more so, my birthday, but this year, I’ve decided to have zero expectations since I know that from a life perspective, I am living on borrowed time. I don’t mean that in a maudlin way, though. I suppose I am feeling my mortality these days. I might also have low blood sugar or low caffeine levels; one can never tell.

Under normal circumstances, I write every single day. I haven’t been doing that for a while now, but I can hope for the best and just keep pushing on. I won’t make promises I can’t keep. From one day to the next, I am never quite certain what will happen, or how I will feel.

So for now, I’m checking in and saying hello to everyone who still reads/follows. I welcome the new readers and I look forward to sharing something I am almost finished with soon.

Enjoy the end of summer, everyone!

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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I Remember

I Remember

This day is emblazoned within my mind. I would learn so much within a forty-eight hour span of time, and I would be permanently changed. But no one tells you that when you’re a child. No. They try to keep you “innocent”. Except in my family. My mother decided I was not going to be lied to or be told nonsensical stories. I’ve been treated like an adult, with free thoughts and a free spirit, my entire life. There’s much to be said for this methodology because, even today, people do try to shield their children from many things. There’s no perfect way to be a parent. Did you just shake your head? You can disagree. That’s fine.

There are so many moments in life, but as someone with extreme intuition, this one still gets me.

I remember a full day of fun, spent with my mother, brother, and Grandparents. I remember exactly where we were, and that we had been in a specific store just minutes before the tension began. I remember feeling confused when some form of visibly silent arguing began, which is when my mother and her parents would switch languages in front of my brother and I. My brother probably doesn’t have any recollection of this, but I do. Whenever another language was spoken around me, I paid attention. I still do.

I remember my mother becoming frustrated, bordering on furious. The plans had changed and she was hurt, trying to rein in her temper. She was trying to put on a brave face in front of her children, but I felt the shift in emotions immediately. Once again, my Great-Aunt and Great-Uncle would get their way, and my mother was not pleased. She was not manipulative and didn’t appreciate manipulative people. She was never fake by nature, but in those final moments, she was putting on a show.

Me, always questioning everything, precisely as she taught me, demanded to know what was going on. “Where are they going? Why are they leaving? I have to say goodbye to Grandpa.” At that point in my life, my entire world revolved around my mother, Grandfather, Aunt (my mother’s sister), and brother.

My mother, of the softly spoken everything, of her calm, easy-going nature, would reply with a tone better suited for a teenager that arrived home at four a.m. drunk, without a phone call. “You don’t need to say goodbye. You’ll see him tomorrow.” I remember trying to get one final hug and kiss, and being forcibly taken away from him. I was angry. He and my Grandmother waved, promising me tomorrow. Tomorrow didn’t happen the way any of them expected, I am sure.

It was extremely early in the morning. Ever the night owl, I left the room I shared with my younger brother to find out what was going on. I remember facing my Grandmother, her always stoic expression conveying something was wrong. I had never seen her so quiet, so sad, so lost.

“Where is Grandpa?” I demanded. You rarely saw one Grandparent without the other, even though my Grandfather was the predominant force between the two. She looked up at me with a blatantly sad expression on her normally expressionless face. “He’s gone.” was the answer I received.

Gone. What did that mean to me? It made no sense. “Then we have to go and find him.” was my reply. I was adamant. I knew he would not leave without me, without talking to me, without saying goodbye. The fiercest part of me knew that he would never leave by choice. Never. She shook her head and waited for my mother to explain to me that the single most important man in my life was “in heaven”.

I quickly learned that NO ONE understood this concept. They would look at me sadly, point up to the sky, and tell me my Grandfather had “gone to heaven”. I did not believe them. I had already extensively searched the clouds and he was not there. Because they all pointed up, I believed he had gone to a castle in the clouds. He would always study the sky with me and show me things, so this made sense in my mind at the time.

I remember his funeral. The entire chapel was filled beyond capacity. People were huddled in to make additional room. Hundreds of people had come to pay their respects. My Grandfather was beloved, respected, admired. I remember looking at all the people, so many of them strangers to me, and everyone looked back at me sadly.

I remember the cemetery. The line of cars was unreal. Again, a testament to this great man. I remember my Great-Aunt Minnie and Great-Uncle Charlie wanting to dote on me from the funeral home to the burial site. I remember my cousins, Gloria and Lenny, trying to lighten the mood in the car. Lenny was known for his sense of humor. My Aunt Minnie tried distracting me with cookies. I was not to be distracted, though. I was this man’s only Granddaughter and I knew I had a purpose on this day. After all, I fought to be there. No one thought I should be “subjected to death”. I’d heard this stated quite a bit in the previous day, and knowing myself, I was paying exceptional attention to who said what and how they said it. I’ve always been a keen observer.

My mother sat down with me and explained everything and asked what I wanted to do. I remember her friend Ellen saying “Don’t you want to stay home and play with me and your baby brother?” I remember looking up at her coldly and saying “No. He is MY Grandfather and I AM GOING.” My mother actually stared at me, shocked by the tone of voice I had used. Before that moment, I had always been described as the “little girl with the ancient eyes”, even as a baby, but in that moment my mother knew I was the fierce warrior she had prayed for. There would be no further argument. I had stood my ground.

Cemeteries are for the living. It’s how we remember those we’ve lost and try to honor them. There is nothing more final than seeing someone’s name and the dates of their birth and death etched into granite or marble. Is it bizarre that my Grandparents’ headstone is the same as my parents’ stone? Not really. I remember asking my mother what she wanted for my father and she said “Just bury us together. Get one stone. Something similar to the one for my Mom and Dad, okay?” Her only concession was that her side have a specific design. I custom-designed that stone with the help of someone who does that sort of work. The final result was startling, same as it was to see my Grandparents’ names etched in finality.

After my Grandfather’s death, I remember heated discussions. My Great-Aunt, my Grandfather’s only sister, asked my Grandmother if she could still go on her vacation, despite the traditional 3-7 days where Jews sit Shiva. My Grandmother acquiesced, as she always did in situations such as this. My mother didn’t speak to my Great-Aunt for YEARS after the fact, and my own anger would become part of the mix as I got older and heard the entire story. If, G-d forbid, anything ever happened to my brother, I would not be on a plane the day after his funeral to go anywhere. I would never show his life such disrespect. It’s nonnegotiable. How the hell does someone claim to be in mourning and then get on a plane to go anywhere to enjoy themselves?! I will forever feel haunted by that move. In reverse, I can assure you my Grandfather would not have done something so despicable.

My Grandmother never spoke about it. She had friends, family, tons of well-wishers, and her children and grandchildren by her side. She became a prominent, front-and-center Grandmother in the wake of my Grandfather’s death, whereas she was very much in the background most of the time before his passing. There was NOTHING she did not do for us, take care of, or handle if my father refused. If my brother or I ever needed something, it did not matter what it is, she was there. She went to all of my gymnastic competitions, every drama performance, every Glee club performance, every Graduation. If it was during the day and my parents had to work, she was the face we saw in every crowd. She loved us, she helped raise us, and she was always right across the street. With her, we would get extra time before cancer came and took her from us. The insidiousness of that disease, coming along and taking someone who stayed out of the sun (I always remember her being under an umbrella or sitting in the shade.), never smoked, rarely drank, was devastating. It just goes to show you that no one is immune.

For roughly the next three years, after things had settled down, I would openly discuss suicide, a word that had NEVER been used in my home or in my life. My family did not discuss such things, EVER. My parents would stare at each other in dismay, and I know what they were thinking. “Where did she get that word from?” I had never been exposed to it, but it was constant. I was determined to be wherever my Grandfather REALLY was, and I made this clear. Every time I would talk about it, my brother would become hysterical, clutching me and telling my parents “She’s my sister. She can’t leave. Don’t let her leave me.” His face would turn red and he’d cry himself into an asthma attack at times. We were incredibly adult for kids, I now realize, but back then, I thought all people had similar family lives and discussions. They did not. They do not.

It’s important to discuss loss, grief, death, and every aspect of mental health with your children. I have suffered the majority of my life because my mother was afraid for me and my father was in denial. But as someone recently said to me “You could have harmed yourself so many times by now, and you’re still here. You’re still in one piece.” Only, I’m not truly in “one piece”. I’m very much a broken, pretty mess, but people only focus on the visual on front of them. They are sitting across from someone who is dressed appropriately, someone who is clean, hair done, makeup on, and they think that someplace, somewhere, I have it all “together”. Sometimes I do, but mostly, I do not. I don’t pretend. I am as imperfect as the amethyst I wear around my neck nearly all the time, except during a Full Moon.

To this day, I still suffer. I still hurt, wondering how different life might have been if he had lived another ten or fifteen years. I miss him terribly. But most importantly, I remember. I remember it all.

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

“The tears I feel today
I’ll wait to shed tomorrow.
Though I’ll not sleep this night
Nor find surcease from sorrow.
My eyes must keep their sight:
I dare not be tear-blinded.
I must be free to talk
Not choked with grief, clear-minded.
My mouth cannot betray
The anguish that I know.
Yes, I’ll keep my tears til later:
But my grief will never go.”
Anne McCaffrey

July

july1

If you saw the look on my face when I say the word “July”, you would know precisely how disgusted I am during the summer. I have never enjoyed the heat and humidity, but it’s even worse when the heat can easily trigger a migraine for you. I’ve been experiencing them on and off with so much regularity, I have reached the point where I wonder if ANY treatment method is going to be helpful when I have so many environmental triggers.

July is a difficult month for me from an emotional standpoint, too, but it doesn’t have it be. I am doing my best, and we;ll leave it at that for now.

Stay safe and comfortable.

P.S. Happy Canada Day to all of our neighbors to the North. 🙂

So Much Misdiagnosis

When it pertains to your health, you are bound to be misdiagnosed multiple times over the duration of your life. According to books with hard statistics, women are far more likely to receive a misdiagnosis than our male counterparts. It makes me question the medical field on a whole, and Lord knows I’ve been doing that for quite some time already. I am not offering up trust at the moment. I have exactly two doctors I trust to care for me properly, and no one should have such low numbers when they need help.

When I was diagnosed roughly fifteen years ago with “inoperable spinal damage between C-3 and C-7” (that’s five disks in total) in my neck that was “pressing on the nerves going in and out of my spine”, thus causing the excruciating pain I am still in, I was stunned. At the time, I didn’t know much about the internal aspects of the spine. Obviously I was well aware one could injure themselves and that you could become permanently paralyzed through no fault of your own, but I wasn’t up on the medical lingo. Until that day, my back and neck were simply an every day part of my body, albeit parts that hurt like hell. Now, all these years later, I am far more educated on the ins and outs. So when I met my current spine specialist in January, I had to report the information I had previously been given. Instead of requesting those records, he ordered an MRI. We both had to put up a fight to get it approved, and once it was, I was thrown into the difficult position of completely changing my insurance just days before a doctor’s appointment. That meant getting the MRI approved through the new insurance company, and I was prepared for yet another battle. However, they approved it immediately. Unfortunately, I did not receive a letter regarding the approval until about six or seven weeks later. There was no way in hell I was getting into an MRI machine when I didn’t have the approval in hand. Call me crazy, but I didn’t want to see an enormous bill for this MRI over a missing document with the approval on it. I’ve seen this happen to people, and I can’t afford to be stupid.

I had the MRI done on June 13th. It was quick, painless, and frankly, not worth the months of built-up anxiety for twenty minutes of my life. When I saw my doctor to go over the results, I was shocked silent to hear that my neck “looks great”. I said “Excuse me?” and he replied by saying that the damage I previously had “probably healed over time”. I stared at him and said “Why didn’t anyone ever tell me that could happen? And why am I still in so much damn pain?” He shrugged and then pulled up the images to show me how perfectly straight my spine is (Thank you for all your lectures about perfect posture, Grandma. I can still hear your voice whenever I don’t sit up straight.). However, this “perfectly straight spine” isn’t normal. Most people have a curve to their spine. So while I have the curve aesthetically, if you’re looking at the back of my neck, internally, it is straight. My diagnosis? Arthritis. It was a genuine “What the fuck?” moment from beginning to end. I’m in excruciating pain and he’s sitting across from me telling me that my disks are perfect and well hydrated, and even said “You have the spine of a thirty year old.”  I have anti-aging bones to match the genetic fact that I also look far younger than I am. Awesome! <I’m rolling my eyes, and being slightly sarcastic.> He noticed that there’s a lot of tension in my upper back/neck area, which he says is where most people store tension. I know my back and neck bear the brunt of a lot of my stress. He looked at my medication history and suggested Trigger Point Injections and referred me to a colleague for Biofeedback. When he discussed meditation and “lowering my stress levels” I said “Hello, have we met?!”, which was apparently confusing for him, so I had to explain my stance on things that haven’t worked for me in the past. I was given an appointment for the TPIs, and left his office feeling dejected beyond words.

I then went downstairs to the lab and submitted to a random drug test for medication I’ve never abused in my life. Let’s be frank when I say I have never abused ANY prescription drug. In fact, I am the last person anyone would ever accuse of having a substance abuse problem, but I did it to reassure my doctor that nothing has changed, just in case her records are audited. With the serious decline I have received in treatment these last few months, that could be sooner rather than later.

My doctor has systematically, over the course of two months, cut my medication down by roughly 80%. It is not for pain, it is not something I can “get high” on, and again, I’m not abusing it. Once my test came back, she wrote me a prescription for 33 pills. My normal monthly dose is 180 pills, and I only ever take them as needed. She has a doctor who oversees the controlled substances in her office. I was supposed to meet with this psycho (You’ll have to trust my assessment here. There’s nothing sane or normal about this woman.) for the second time, but she chose to cancel on me without giving me twenty-four hours notice. Her secretary had the audacity to inform me that I may receive a bull for HER cancelling on ME. If I receive an $80 bill from her office, she had better HIDE off the fucking grid because hunting her down like a rodent will become my new mission in life, right after I report her for fraudulent billing practices. She has her secretary call me to cancel and actually says “Tell her she can stop by Wednesday or Thursday.” Like I have nothing else going on in my life? I wanted to say “Please tell her to go fuck herself.”, but instead I said “I am booked for the next two weeks. I can see her July 3rd.” I intentionally chose this date because I am a bit of an evil genius who, now that I know who I am dealing with, has decided to be as challenging as possible. Her secretary gives me an appointment, after saying she has several other patients before me on the same day and then adds, “I don’t know if she’ll be in, it’s a holiday week.” July 4th is on Wednesday, if she’s planning on not being in the office, then I’d better not receive six confirmation e-mails like I did for the cancelled appointment. I intentionally ignore these e-mails and any text messages asking me to confirm so that they have no paper trail of confirmations or cancellations from me. I will be calling on Friday to confirm because I want to record the confirmation call. If she cancels again, my doctor is going to hear about it because I’m the one being punished by having my medication reduced each time it is renewed, and if I get the call on Monday, she had better be prepared to write a new prescription on Tuesday when she’s in the office, or have a colleague do it. If this was going to be an issue, she should have said something to me directly when she saw me at the end of March. Instead, she chose to say other things and there was no discussion regarding this topic.

The drug in question is a well known anti-anxiety medication (It’s not Xanax.). There are major health risks involved if I am not slowly weaned off of it over a two to three year period. If I should have a seizure, heart attack, or stroke due to this rapid reduction in medication, this particular doctor is the first person I am authorizing my family to sue the living crap out of (I’ve already told two family members about the situation, just in case.). I have even had my insurance company call them and warn them that this is both negligence and medical malpractice. They have been advocating for me due to communication issues where my calls don’t get returned for 5-7 weeks at a time, as opposed to the same day. I am trying so hard to focus on my health and get everything straightened out, and this office is constantly doing something to piss me off. Even the insurance company has said “I’m playing phone tag with the nurse who works for your doctor. I understand your frustration in being ignored because I call several times a week, too.” They want to get paid by my insurance company, but they can’t return a phone call in a timely fashion? Frustration is not the word I would use at this stage. Especially knowing that they just billed nearly $2000 for a drug test, my third this year. I expect my insurance to cut them off from further testing at some point, especially since they fork over $1800 each time. There are companies who wouldn’t pay $300 for this constant bullshit, but obviously they have an agreement regarding this. It’s absolutely ludicrous. There is no fool-proof way for my tests to be accurate. The first one was positive for the medication I take. The second was negative, but my sample was also disposed of after it reached the four hour mark, so I don’t know why it was reported at all if they disposed of it. The third was positive. It doesn’t get sent out to a special lab for analysis, it’s merely someone dipping a stick into the sample and then submitting a report back to the doctor. There’s nothing precise about it since the tests declare that they can be inaccurate since they are not set up for this type of medication. It actually lists about ten medications and says it cannot guarantee accuracy for them.

Being medically strung along does not make me feel comfortable or safe. It does not foster trust. It took my regular doctor seven weeks to change a medication for a serious health issue, and have someone call me in regard to it. Seven fucking weeks! I am now forced with calling back and saying “The new medication made me deathly ill. Please change it.” How long will it take her to change it at this stage is anyone’s guess.

So, as I navigate all of this, I’m also struck by the annoyance that the medication in the Trigger Point Injections wasn’t even explained to me. I spoke with someone and did a little research, only to find out it’s basically steroids, anesthesia, and a muscle relaxer. He did say that if it worked at all, it would last about two weeks. Due to a new-to-me medication I am getting from my neurologist (I will probably talk about this next year. I am, intentionally, being tight-lipped about it because I want to see if it’s going to work or not.), I had to ask her if it’s safe to have the injections. She gave the green-light, but I still don’t feel comfortable jumping into it. He never addressed the issues with my lower back, and during the physical exam, when he pressed on my spine, I nearly flew across the room when he hit my lower lumbar area, yet he did not order tests or answer my questions about it regarding pain. That’s going to bug me, and as a result, I have decided to get a second opinion. I do have an appointment for the injections at the end of July, but this is still MY health, MY body, and if I don’t feel 100% comfortable, then it’s okay to admit it and it’s okay to have someone else take a look. I have my x-ray report, I have the MRI images on CD, so asking for a referral to another spine specialist  is being fair to myself. I like this doctor, but that doesn’t mean a whole lot since we went from “I can prescribe something.” to “Let’s start injections ASAP.” Overall, he IS an anesthesiolgist and what do they do in pain clinics? They perform injections all day long. I’ve never been under any form of anesthesia in my life, and if I can avoid that going into my body, I will. Obviously, if the other doctor is on the same page, maybe he or she will better explain their perspective, but that doesn’t mean I have to agree to their methods. This doctor and his needles will still be available to me, if I choose that route, but for now, I would like to see what alternatives are out there. Pain management shouldn’t immediately fall under “anesthesia” and needles. At least not from where I am sitting, as the one in pain.

I am hoping and praying I get real answers soon. For now, I’m going to listen to my intuition and get a second opinion. Possibly even a third, if necessary. There’s something telling me that I need to dig deeper, and I can’t ignore that voice.

I’ll be back soon. Make sure you have fun without me. 😉

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

 

Sometimes It’s The Retelling That Sucks

Saturday afternoon someone asked me what I was doing for Father’s Day. I had actually forgotten that Father’s Day was coming up, so this conversation was yet another reminder for me regarding the fact that my father has been gone for ten and a half years. Somehow, my brain just wasn’t absorbing this holiday. Even today, I probably wouldn’t have even thought about it if someone in the grocery store hadn’t been discussing lobsters for her husband’s “Father’s Day cookout”. It legitimately went in one ear and out the other. I didn’t fully grasp it until late in the day.

Having to reply to the question, “What are you doing tomorrow for Father’s Day?” meant rehashing a wound. I blinked and said “Nothing. My father’s been dead ten and a half years.” The person automatically apologized, but the question didn’t bother me. It was the thoughts the question conjured up; those bothered me.

My father was not good at accepting gifts. One year we gave him a watch. He desperately needed a new one and it was given with a full heart, but he tried it on and flat-out told us to return it. I remember thinking “Wow. He can’t appreciate anything we do for him.” Because for years, my father would reject whatever we did for him. One year I got him a movie he asked for. I had actually pre-ordered it so he’d be able to enjoy it immediately on release day. About a week or so later I asked “Did you like it? Was it good?” A few days later, it arrived in the mail. I was not pleased. When I questioned him about this he said “I’ve seen it once. I won’t watch it again. Enjoy.” I was utterly dumbfounded. It didn’t matter what the gift was; there was always some sort of rejection attached to it. For me, someone who LOVES to give gifts, it was a slap in the face. I reached a point where I would only agree to cook a nice meal for him if he was choosing to visit.

A few years before he passed away, I got him tickets to a New York Yankees game in Philly as a Father’s Day gift, even though the game would be roughly two months later, if memory serves me correctly (I still have the ticket stubs somewhere.). I scored excellent seats, mainly because no one was attending Phillies games at the time, but being in close proximity to New York, there was a lovely mixed crowd of sports fans. Surprisingly enough, my Dad made the trip out to spend the weekend and we went to the game together. I had additional tickets, but my brother didn’t want to go.

When we got there, batting practice was still going on, so we got to enjoy it. Jimmy Rollins, I want you to know that my father’s first comment during that game was “The shortstop for the Phillies is an absolute STAR. He’s an incredible infielder.” He was so impressed. It was the truth. My father called it; Jimmy would go on to win a World Series with the Phillies in 2008 and was traded in 2014. You could have knocked me down with a feather when I saw that Gabe Kapler is the Phillies current manager, but I digress…

It was a blisteringly hot day, and my “perfect” seats were in direct sun the entire afternoon. Halfway through the game my father said “Now I know why I like my baseball at home.”, which I understood. He had gone to games as a kid, but he wasn’t well, and he thought he was masking this from everyone, but he was the worst liar.

We left the game early, worn out and badly sunburned. For me to get burned is a testament to how intense the sun was that day. I was completely covered in sunscreen and had a hat on. My father, in the midst of battling cancer, only wore sunscreen to pacify me and purchased a Phillies hat once he saw how necessary it was. My father, who never donned a single article of non-New York sports attire. It’s pretty funny when I think about it now. It was even funnier because he brought a hat back for my brother from the game. He threw it back at him and declared “I can’t be SEEN IN THAT!” My brother now works in and around Philly and cheers for Philly teams. I pretend not to know him when he does this. I currently live in Massachusetts, but you won’t ever catch me cheering for the Red Sox. Some things are sacrilegious.

A few years later, my father would be gone, less than two years after his brother passed away, also due to cancer. That day at the ballpark is one of the most prominent memories I carry because it wasn’t a negative experience. For maybe the second time in my entire life, that day, he was just a father with his daughter. I’m sorry my brother chose to pass on the experience, but maybe there was some cosmic reasoning involved.

Father’s Day opens up wounds for me. This year, I choose to to put what I can behind me and move forward. Believe me, the last thing I need is another reminder.    

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.