It has always been important to me to be transparent about my shortcomings and the strengths. I don’t try to pretty anything up. Too often, people pretend their lives are so perfect online, with perfectly posed, edited photos, but you never see the truth of what goes on behind closed doors because all they care about is the imagery. That’s not what attracts me to people or to their work. Honesty and humor attract me. Real humor; the kind that isn’t forced, that isn’t passive aggressive, the kind that is wholly natural. It takes a lot to make me laugh. In the past week or so, I’ve maybe laughed four times. Each time, my cats came to see what was going on. “Is she having a stroke? Should we get help?”, they probably wondered. Of late, laughter hasn’t exactly flowed.
As an extremely private person, I still know that being forthcoming about my suffering (From A to Z) has helped others get help, come out of their shells, talk, trust again… I know this because they have e-mailed, messaged, and shared these facts with me, even if it took them a few years to say anything. I didn’t know my voice would help people, but it has and it will continue to do so, because I know the power of using your voice for change.
Wishing you all a safe, warm, stress-free weekend.
P.S. I will be listing charities ASAP who are helping out with the crisis in Texas. Every penny helps. It took our government way too long to respond to the need for help, and our own people were forced to endure this without an immediate helping hand. It’s disgusting beyond words. It’s Puerto Rico and Hurricane Katrina all over again, and it is NOT acceptable.
I know people who are 6-7 days without power and who have no clean water. Power is being restored slowly, and many are afraid of what will happen when they return to their homes. Will the pipes have burst (A much more common occurrence in colder climates.)? Will they be able to return home safely? They have no idea what they’re walking into. They are NOT prepared for the kind of weather they got. Never again should states be lacking a strong electrical grid, not have adequate salt, sand, and plows for snow removal, etc. This is not being discussed enough! I’ll do my part and hopefully there can be some unity in this country to help where needed.
Prescription Medications for Fibromyalgia: Lyrica, Cymbalta, Savella, and Off-Label Remedies
I’m a rare success story with Cymbalta, at a very high dose of 360 mgs. I took it accidentally, but it helped so much and my doctor had zero issues with the dosing. Unfortunately, once it stopped working, I could no longer tolerate even the smallest dose. 😦 I have no idea what it’s like to be pain-free.
Chronic Pain Awareness Month: Part II
I had x-rays done of half my body over the weekend. My results show nothing new (The radiologist was able to compare two to previous x-rays from 2018 and 2019.), and they completely denounce a phone diagnosis from late May; a diagnosis I did not believe for a second.
Even with natural pain remedies at hand, I’m suffering. They wear off so suddenly, you have no time to regroup. Despite having a prescription on hand, I haven’t touched it other than to verify the count. 😦 The deeper reality is: I have no idea when or if I will be prescribed pain medication again. I’m not “stocking up”, but I am saving them for “the worst”. The worst can be at a moment’s notice, tomorrow, or a week from now. It can be so sudden, so I am trying to be prepared.
My doctor is inconsistent regarding treatment methods, and he is out of the office this week. I sent him a brief e-mail letting him know I’d discuss this with him when he is back in the office.
Reading the x-rays was upsetting. Slight changes in the cervical spine, where I’ve already been diagnosed with arthritis. Slight changes to lower lumbar spine, where I was hit in the lower back in January of 2019. The radiologist recommended additional imaging and tests to rule certain things out. My doctor e-mailed a reply and glossed over this completely. He tried to say I have a pinched nerve; which did NOT show up on the x-rays. I came away angry, because if you’re going to make a claim like that, I want imagine to show I have it. I don’t want to be told I should, “Have a nerve block performed.” Where would it go?!
I’m tired. Tired of suffering. Tired of being in pain. Tired of the isolation. Tired of not being able to talk to too many people. And tired of the media hyping up ADDICTION in order to punish patients who suffer from chronic pain. I’m a patient. I have never used heroin, cocaine, illegal Fentanyl, ecstasy, you get the drift. I’ve never been attached to drugs; regardless of their status. But I do believe the DEA needs to get the fuck away from doctors and mind their own damn business regarding how patients are treated in terms of access to medication.
Every single day, I worry if I will be a device victim. Someone who is told, “We can put a pain pump in and refill it each month.”, in order to restore me to 25-50% quality of life. There are other things one has to worry about when a device is installed into their body; like leakage. I know people who’ve nearly died and had to sue the device company over the medication overdosing them, or not dosing them properly at all. Devices aren’t an exact science, despite what they will all have you believe. Their safety comes into question, and I know a lot of people with spinal cord stimulators who are waiting to have them removed because the device completely failed them. They are marketed as the “answer”. They are not.
I keep hoping for the right doctors, but today, I feel dejected.
Pain Diminishes Us
“Pain diminishes us, and it is so important to remember, in the midst of pain and everything that pain takes from you, that still … you are enough. You are enough just as you are. You are worthy of love and kindness. You are enough. And you have enough.”
What Does Fibromyalgia Feel Like?
The ninth circle of hell.
Why I’m Fed Up with the Healthcare System
13 Little-Known Symptoms of Fibromyalgia — as Shown in Photos
Two days. That’s all it took to completely erase me. My entire past and much of the present; things I’ve held onto tightly because I believed I had something in life worth fighting for. I still had hope. I believed in the responsibility. I believed in keeping specific things, and people, alive, and sacred. Now, I have to start over, with nothing but memories that take over my mind and torture me. How much trauma can someone with Complex-PTSD can handle? Step into my pain; it’s not a pretty or fun place to be. 😦 I’ve got zero hope left.
Some people might relish the opportunity of a clean slate, a new beginning, or whatever one would call this hell I am trying to live through. Me? I feel completely dead inside, and no one directly around me allows me to talk about what I think or feel. They change the subject and talk about nonsense, or they only want to talk about themselves. It’s unbelievable how selfish others are. They “don’t want to hear it” if I have something to say, no matter what the subject may be. They ignore the suffering, they ignore the pain I am dealing with, and they show me how much they care…about themselves. Writing is the only place where my thoughts, views, and feelings are respected and/or accepted. You don’t have to understand it or even be able to empathize. You simply read, or not. I cannot hold it against you. There’s a lot to be said for pouring your heart into something and clicking PUBLISH. More often than not, I forget what I’ve said after that. Not because my short-term memory is that bad, but because writing is pure, honest freedom for me. Until I start receiving messages about how much my voice has helped others, I forget about a lot of the subjects I’ve covered over the years. I don’t know that this will help anyone other than me, but purging a tiny amount of the pain I am dealing with is not a selfish thing to do. Last time I checked, my name was on this platform. No one else gets to speak for me.
When you lose everything you’ve ever owned; including your family’s entire history, every photo dating back to pretty much the beginning of photography within your family, all of your clothes, computers and other assorted electronics, carefully chosen furniture, jewelry from every major life event, the one piece I had of my father’s mother, and everything that belonged to my mother and Grandmother. A myriad of pieces given to me to commemorate important life events. 99% of it from people who are no longer alive. Books I treasured, absolutely everything I held dear, because the majority of it was a part of who I am, and I’m left wondering how to pick up the pieces. It’s more than jolting. It’s traumatic beyond words. Only one person told me they would feel precisely as I do; hurt, erased, traumatized, in deep emotional anguish. If one more person says, “It’s just stuff.”, I will personally rip their eyeballs out and force them down their throat. Or worse. I have no clue why people think I’m a nice person and incapable of physical harm. Don’t test this Scorpion.
As a direct result of this loss, I have to change all of my legal documentation. Someone immediately tried opening accounts in my name. Thankfully, it was red-flagged and I was contacted via e-mail and phone, but I don’t know if any damage was done before it was flagged. Someone stupidly said to me, “Who would want to steal YOUR identity?” Are you serious?! I don’t know how these particular criminals think because I’m not a criminal, but I don’t believe they give a damn about who they steal from. It can happen to anyone, and it does. Identity theft is something we all need to be protected from, and made highly aware of. This was something I was concerned would happen. Always, ALWAYS listen to your intuition.
Every single day of this “new life” is a reminder of all the problems one faces as the direct result of others actions, and inaction. It’s a reminder of exactly where you stand in this world, as well as with the people in your life.
I catch myself thinking all the time, “What’s the point of all this? What the hell did I do to deserve such torture?” I’m the one in tears, living with doubts. I”m the only one deeply upset and troubled by this. And each time, I wish I simply wouldn’t wake up the following day, that a car would hit me, that something or someone will finally realize there’s only so much even a strong person can cope with before they are done. That’s where I am; Done. My life could not be more meaningless.
Between this, and the injury sustained in January, who wouldn’t be done? I’ve got an idiot doctor who refuses to manage my pain (and clearly cannot be bothered to return a phone call. He is about to receive a strongly worded, unpleasant e-mail. By ordering a necessary test, he’s not doing me a favor, he’s looking for additional damage. He makes it sound like a negotiation. It isn’t; it’s my health, and my life!), so I am constantly throwing up because there’s only so much pain the body can handle, or so much stress. I can’t keep food down most days, and someone recently implied that I’m doing it on purpose; not eating. If you actually care about me, don’t EVER fucking insinuate that I have an eating disorder. 1) That’s not concern, that’s being cruel because you don’t understand what this level of physical, mental, and emotional pain is like. Ignorance is bliss. Be glad you don’t know, but don’t toss your ugly negativity in my direction. 2) Comments like that are hurtful, thoughtless, unnecessary, and do not meet the realm of “love” or “concern”. 3) Comments such as they are, are accusatory and full of hatred. Do those comments make you feel better about yourself? Are they necessary? Ask yourself these questions before you open your mouth. 4) A truly caring, loving person would be on my side. They would be so concerned that pain is doing this to me, and they’d be physically and emotionally present. They would show me their support. I’m pretty sure the FedEx delivery guy has more compassion for me right now. Yes, that’s sarcasm. 5) If you’ve said any or all of these things, you should be ashamed of yourself, because I am/was ashamed for you each time these barbs were thrown my way. You’re lucky I have the grace to walk away. That is a testament to the existence of a Higher Power. It’s a testament to a lot where my character is concerned.
No one seems to understand how bad all of this is, nor has anyone been able to understand where my head is at. There’s no victim mentality in my mind, heart, or soul, this is simply me conveying enormous difficulty, as many writers do. I can’t even be “fake polite”, so what you get is exactly who I am. I don’t have the time or the patience to pretend. My life is not, nor will it ever be, “Instagram perfect”. There is beauty that comes from being authentic, from suffering and growing through the pain, and from being a person who would prefer to build people up, instead of constantly tearing them to shreds. Imperfect and honest is beautiful; don’t EVER let anyone tell you otherwise.
My anxiety is through the fucking roof. Almost to the point where I considered asking my doctor to put me on a higher dose of anti-anxiety medication or switch the medication up entirely. I am depressed beyond measure (Please don’t worry about this; I am under the care of a physician. He hasn’t called me an idiot to my face, and actually said he never would, but when he rolls his eyes at me, I KNOW I’m being an idiot and that he’s being incredibly diplomatic. I trust that this doctor has my best interest at heart.). I have no emotions; just anger, hatred, and a truckload of sarcasm. No one has really noticed. Everyone is pretending, or living on their own planet. and that’s insulting as fuck. One of my best friends pointed out that I’ve never not been highly communicative, even when my father was dying, During the worst shit in my life, I still took the time to listen to other people, no matter what is was they were going through. During some of the worst times in my life, I have helped others and they had no idea what I was going through. Again, this lends to character.
When you’re going through awful things with damn near zero support, it makes things even worse. When a person has very little to wear, buying a t-shirt or a sweatshirt does not fix the profound loss of their clothing, sneakers, shoes, boots, etc. It’s a nice gesture, but it does not fix the long-term issue. It’s appreciated, but it doesn’t solve the problem at hand. Knowing precisely what is missing and how much I relied on my wardrobe hurts like hell. Granted, most of my clothes might not have been valued by anyone other than me, but I deemed each item critical. I take really good care of my clothes and have had many sweaters and sweatshirts since junior high. Now? Now, I have little to nothing. I would have to do laundry every few days if I was constantly out of the house because I don’t have enough of any one item to go more than a week or so without washing mostly all I own. In the past, I could have gone months without doing laundry and still had something clean to wear each day. Sometimes, I think that is an American luxury.
Initially, a few people (friends, mostly, and one family member) offered to help. They said, “Put a list together and we will try to help however much we can.” I was genuinely touched by that offer, but then I did the math on the “list of replacement items” and deemed it unfair to ask other people to fix MY problems. I’m not selfish. I’m desperately trying to figure my shit out. I know I will be able to replace certain things slowly, but the big stuff weighs heavily on my mind and breaks my heart. It’s like someone walked up, stabbed me in the stomach, and took my soul along with the knife. I mean hell, I cried over everything that was once in my kitchen. Priceless items that were passed down to me. I’ll never be able to get these items back. They were NOT “things”, they were history. No one deserves to have their history erased.
For the evil people who have my belongings; I hope you understand karma. You took away the last shred of my hope and faith. I hope you rot to death, because people like you are walking cancer and your level of evil does not deserve to exist. Evil does not deserve to be saved, to be rescued, or to be loved. It’s wholly deserving of punishment. And yet, we rarely get to see truly evil people receive their punishments in life, do we? A friend recently mentioned seeing someone’s downfall and laughing about it. I’m not cruel enough to laugh, as she did, but I would, on occasion, like to see justice. Mostly, I just see repeated injustice and I don’t want to live in a world where this is everywhere. I’m waiting for the phone call I am sure to receive when my previous engagement ring is pawned. It is laser inscribed and would be very hard to cut down. The second anyone sees it, they’re not going to want to touch it. They can, and will, end up in jail. It is insured by my ex-fiance’s family and they are aware it is missing. They wanted me to keep it because they were never going to approve of another woman. The stone has been in their family since it was first cut over a century ago. I was once very proud to be wearing it. Life changed, but I am hopeful the ring will be returned to them. It was never truly mine, but I valued it and took exceptional care of it.
When I left Pennsylvania, I did so with just two framed photos: One of my mother, Aunt, and Grandmother, and another of my Grandfather and I as a baby. My baby book is gone, along with all of my baby photos. Pictures of me holding my brother and photos of us through the years. Thousands of photos which marked half of my life, my entire career, and it’s all gone. Same for my brother. Unlike me, he doesn’t seem to care. He’s got clothes and other things to keep him going. I do not. I’m barely making ends meet at the moment (I had to turn down a lot of work that came my way these past few months. I cannot sit for sixteen hours editing any more. My lower back is a disaster and my neck flares up from stress in five minutes.) and there’s a lot of financial pressure on me. If prostitution was legal, I’d be on a street corner tomorrow. I’m not joking.
I have nothing to go back to, and nothing to go back for. I have been erased. There’s nothing left of me or for me.
I have to say that in all this personal horror and pain, the kindest thing someone did for me, a perfect stranger, was find an autographed first edition book from one of my favorite authors (I had an extensive collection of first edition books from authors I admire, respect, and whose work I absolutely love. I loved those books like some people love their children, and I took exceptionally good care of them. They were on shelves in my living room, in alphabetical order. All of my music and DVDs were also in alphabetical order. Yeah, I’m a bit of a freak. Live and let live.) and have it shipped to me. I was so stunned by this gesture of kindness. When I opened it, I immediately shed tears of shock, and felt such overwhelming gratitude because, again, this person doesn’t know me, and yet, they treated me with such sweetness and generosity of spirit. I will NEVER forget the gesture and I will absolutely pay it forward.
I was raised to always lend a hand, always help friends and family when you are able, and NEVER keep score. I’ve helped people even when I wasn’t able, because sometimes all a person needs is to be heard and understood. Sometimes, a person needs to know they’re valued. I have no such knowledge at the moment.
I feel utterly abandoned by the vast majority of people who claim to love and care about me. Everyone claims to be “so busy”, but if you have time to post selfies non-stop and be obnoxious in general online, then you have five minutes to check in with someone and make sure they’re okay. A text message is a quick means of communication when you don’t have hours to spend on the phone. My days of spending hours talking to anyone via phone are dead and buried; I don’t even think I like enough people to want to spend that much time talking. I don’t have anything of value to discuss. At least not at the moment.
If I don’t answer someone, it ISN’T because I am busy. Sometimes I am, and I’ll reply to let you know that I am indeed busy and not ignoring you. Time gets away from me very quickly these days, but it doesn’t mean people aren’t on my mind or in my heart. Other times, my silence is the only thing keeping the other person from having to breathe through tubes. Thoughts don’t hurt, but my hands around someone’s throat is a whole other ballgame.
A little over a month and a half ago, an incident occurred and as a result, I asked several close friends if they perceived me in a negative light. I used very specific words when I asked the question. Most people openly said, “Absolutely not.” and one encouraged me to “Always be myself.” One friend, who I thought so highly of, gave me a reply that was hurtful, insulting, rude, and disrespectful. I would like to think she didn’t mean to come off like that, but I refuse to make excuses for people. Once you say it, you can’t take it back unless it’s within thirty seconds and comes with an epic apology. Think before you fucking speak. After reading what she said multiple times, I decided that it was best to keep my mouth shut. To discover that a close friend is secretly judging you behind your back is extremely hurtful. If she wanted to play games and/or pick on someone, she chose the wrong person because I can hit you and I will always hit harder. I’m exactly as advertised; not that nice.
When a person has stressed positivity to you and comes at you with immense negativity, not only are they a hypocrite of the highest order, but they have clearly forgotten all the times you have blindly supported them. They have also shown you their true colors. They’ve been unmasked and there’s your ultimate sign. Her comment made me think of all the times where I had momentary judgments I pushed into the far corners of my mind because I don’t like being the girl who is judging her friends. In moments like that, I keep my mouth shut. I work really hard not to be that kind of person, because not only is it unattractive, but no one would want to be friends with someone like that; someone secretly and cruelly judging them. Especially me. Suddenly, I wanted to remind her of every single lapse in her judgement in her life on this earth, as opposed to my rare lapses. I’m not tooting my own horn, I’m just sharing my honest thoughts. You can be honest without being cruel or hurting someone intentionally.
There is always a way to answer someone and NOT be hurtful. It’s called TACT. I know, because I specifically ask people if they want the truth or if they want my opinion. I give them a brief way out because I know at times, I can be quite harsh. Most times, people don’t want the truth at all, they just want to be told they’re right when they’re wrong. Still, there’s always a way to talk to someone without deeply hurting them or permanently damaging a relationship. Always.
What I found most interesting about this particular situation is that I’m not a big sharer regarding my personal or professional life. I could have twenty kids and no one would know, including my family. People have often said I’m the best person to share things with because I will take something they’ve told me to the grave, and that is true. If I don’t trust you completely, I will keep you at a distance where it pertains to my life. I am not an over-sharer. My best friend once thought I was mad at her because I replied with two words instead of a paragraph to a text. I wasn’t mad, but she’s right; I’m wordy. However, in that moment, two words seemed like the appropriate response and we easily cleared things up once I told her that I’ve never been mad at her. Not ever. She is a rarity because usually people screw up with me at least once. In the 20+ years of our friendship, I have never been mad at her, angry, etc. We don’t fight. When you have healthy friendships, there’s no need for nonsense. So for someone to say I am “surrounded by drama” was extremely hurtful. There’s a level of blame in that comment, and I don’t take kindly to it.
I am solely responsible for how I behave. I can not be held responsible for the actions, words, or behavior of others, be they friends, family, or a random idiot who wants to hurt/harm you because they have unresolved personal issues. They are not my problem or responsibility. I don’t have to take the abuse of anyone, regardless of who they think they are in my life. Chances are, if you’re being or have been abusive towards me, you mean less than nothing in my mind/heart/soul. If that was your goal, bravo.
I’m not perfect, nor have I ever claimed to be, but I’m not a horrible person, either. I don’t wake up each morning with a list of people to hurt and/or insult. That’s not who I am and that is not the message I want to spread. If I’ve said something publicly about someone, like a doctor who treated me in a horrendous fashion, for example, then please know my comments are wholly warranted. There are a myriad of situations in which I will speak up and speak out, but I only speak when I know I’m right. If I feel I might be wrong, I keep my mouth shut. I’ve always felt like that was the safe, smart option; keeping your mouth shut when you’re uncertain cannot harm you, nor can it harm anyone else.
So here I am, suffering, struggling to remain alive, asking for nothing because I know better, and there are only a handful of people who are not attacking me almost daily. When a person suffers from any form of illness and has said to you, “There is too much pressure on me. Please stop. It will be handled.”, but you keep pushing and pushing, to the point where the other person is about to explode, then you are part of the problem and you won’t get your way by continuing to push. It’s important to back off when a person has given you a boundary warning. It’s even more important when I’m the person warning you to give me space in which to breathe. Piling more on top of someone, especially when you have zero idea what they’re fully going through, is wrong. If you want an extraordinary amount of respect, then you have to be willing to give it, in kind. If you want to be hated, keep piling on the pressure. It will almost certainly involve a trip to the emergency room…for you. Once I lose the ability to care, and this has happened a few times in my life, I shut down and I feel absolutely nothing for the other person. They could suddenly be on fire and I would have no reaction whatsoever.
I feel like much of this comes back to not being a big sharer. I don’t have the trust to give anyone. Some people earn it. Some people you automatically click with, and others you work hard to try with, but you shouldn’t have to work so hard where trust is concerned. If it isn’t there, don’t force it. If you’ve spoken to someone for over six months and you don’t even want to see them, leave alone talk to them, then there’s definitely no trust established. It’s okay to admit that and move on. And sometimes, it might be someone you’ve known your entire life, and all it took was the wrong sentence or behavior, perhaps both, for you to shutdown and realize that you cannot dwell in their toxicity any longer. The person you owe the most respect to is yourself. I don’t ever want to lose sight of the fact that I am a priority, and that my thoughts and feelings are valid. Especially when I am so often told that I’m wrong. Statistically speaking, I cannot always be wrong. Again, there’s a reason I only speak when I know I’m right, so if you’re someone who wants to discredit my feelings and views, just plain fuck off. That is the nicest possible thing I can say to people right now. Be supportive and kind or fuck off.
I find it sad that so many people feel the need to show off every single aspect of their life, but will never share the darkness. They will never be honest about how hard things can be. Nothing in life is perfect. There’s no such thing as the perfect relationship, or the perfect marriage, or the perfect anything.
I have my battles and my struggles. I am open and honest about them. There are things I will probably never write or talk about because they’re so painful, I can’t even let my mind go there. I keep pieces of myself for myself, and there’s nothing wrong with that. It does not detract from my authenticity or how I explain things. It does not diminish me as a person, take away from my talent, or make me lesser. I work really hard not to dwell in the dark and the places of pain, but it is not easy to throw yourself into the light. Some days, as always, will be better than others.
Today I stand here as someone who reached out to her doctor when her medication seemingly failed overnight, and made me sink into suicidal thoughts and feelings. I know he will get back to me. It is important to have a doctor who is on your side and who is objective enough to hear what you’re saying. As someone who spends more time with me than most people, I would like to get to a place where I don’t have to constantly be in his office. Especially since my OCD slipped one day and told him I desperately wanted to paint it (his office). Interestingly enough, he agreed with me and has since asked me about which colors would look best. Yes, I find that funny, but I actually appreciated that he didn’t take offense.
A few months ago, when I first used the word “erased”, someone asked if I felt that way “in this room”, and they meant in the room with them. I said no, but their behavior has dramatically changed and I feel like it’s time for them to either get with the program or it’s time for me to move on. I am good with either option. I guess I’ll know more about that next week, and in the many weeks to come.
I am sad, depressed, hurt, and trying to rebuild myself and my life. People look at me and have no idea how much of a mess I am. And many have made it clear that they do not care. It’s important to know who does. I’m not looking, but I AM paying close attention.
I’m doing my best. My mother always told me that my best is always good enough because it means I am trying. So for the person who doesn’t think anything I do is right, are you good enough? Not so much. Not from where I’m sitting.
I’m starting from scratch, like a newborn. This time, it’s all going to go quite differently.
P.S. Before I forget, thank you to anyone who was involved in my being named an “Inspiring Writer of 2018” and an “Inspiring Writer to Read”. It means so much to me and my heart just bursts from the messages and feedback on Twitter and Instagram. Let’s go for a three-peat, shall we? 😉
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.