“Don’t make light of any man’s pain.” ―Patricia Briggs
Once Upon A Time…
Once upon a time, in an extremely bizarre reality, I was in a relationship I should not have been in. The warning signs were there, but some people burn so brightly that you don’t seem to notice you’re going up in flames and turning to ash. Immensely large red flares of danger were being sent up so I wouldn’t get burned. Did that stop anything? Not so much.
He was the quintessential “bad boy”, complete with a Harley Davidson collection (the actual motorcycles, not memorabilia.), tattoos, multiple drug addictions, and a one million foot yacht chock full of issues. Maybe the maternal, nurturing aspect of me wanted to fix or heal him. I don’t know, but whatever it is, I’m thankful every single day that it is no longer a part of my life.
Initially there was no reaction or emotion from me towards him. He was just a guy, a guy all kinds of women fell for, but I prided myself on not adding myself to the throng of fools. Until one day, when I was seemingly drawn in like a moth to a flame. Except I wasn’t a moth, I was a butterfly, and yet, I suddenly had to have him. The pull was intense. He was crazy about me; The only person who challenged him, who questioned everything, and who was not impressed by anything. The problems though, they were simmering under the surface, just waiting to come out, one by one.
They started relatively early. I had never been told I was “too skinny” before. Even as a former gymnast that had experienced bouts of bulimia on & off for about two years after realizing that I’d never be an Olympic anything. I did not consider myself “too skinny” or “too” anything, really. I had the mouth of a Marine on leave, a writing career that had taken off in an amazing way, and a guy who told me he loved me, but to this day probably doesn’t know the meaning of the word. Someone send that man a dictionary. You’ll find him in there, somewhere very close to the word “Douchebag”, providing you’ve opted for a Webster’s upgrade.
His job allowed me the independence and space that I like in a relationship. I can’t have someone in my face 24/7, nagging, and standing over my shoulder like a watch dog. It drives me insane. He respected that, until the possessiveness became more than just one or two phone calls a day. At first it simply seemed like he was going out of his way to surprise me and brighten aspects of my life, but that wasn’t it, not at all.
The man could spit out promises just as quickly as he broke them, I just didn’t know he was trying to break me in the process.
The criticism I endured throughout the course of this relationship was actually harsher than what I dealt with from my family, and even though I had a comeback for everything he said, the words still haunt me… I went from being vibrant, smart, confident, & 100% in control to depressed, unhappy, paranoid, angry, & jealous. I was reduced to questioning why I was somehow not good enough for him. It was irrational and insane. Logically there was always an inner voice telling me “He’s not good enough for you. What are you doing?! This man is poison. Tell him to go to hell and walk away.”
I remember crying one night to my best friend at the time, after a particularly shitty thing he’d lied about. Here I was, the strongest, toughest, most direct chick people knew, asking “Why would he lie to me like that? Why would he lie about something so important? Why aren’t I good enough for him?” I was devastated by the pathological way in which he’d lie.
My best friend consoled me quietly, basically saying she didn’t know why he had lied or why he would, but eventually, months later, she told me I was “Too smart, too pretty, and all around way too good for the likes of him!” She meant it. She’d had enough of him hurting me. She was furious that he would hurt me in such a manner and then behave as if all was right in the world, and her anger continued to fuel when he showed up at a work event we all attended with a married woman on his arm. “A friend”, he’d called her. More like a drug supplier he’d hooked up with. He was spiraling and wanted to take me with him, but I would not allow that.
For the record, I was already ass deep in alligators when I realized just how big an issue the drugs actually were because they weren’t an issue at the onset. It went from being an old football injury to being an all-consuming, problem-inducing, complete lack of grip on reality. It started out small, as many addictions do, and escalated until it had to be confronted. I did not condone it in any way and refused to support the habit. I was not going to be in a relationship with an addict, period. I was the catalyst to get him into rehab, explaining in list formation all that he would lose if he did not get clean. But as most people can tell you, 30 days in rehab will detox you, it might even get you to talk about why you got into it in the first place, but it’s every single day after leaving a protected environment that matters most. If you have people that love & support you, you have a greater chance at remaining sober. You might slip up, recovery is going to be a constant for the rest of your life, but the effort you put forth is SO important. However, if you return to the exact same lifestyle and friends you had during the height of your illness, it will revert you right back into it at some point, especially if you have no real desire to be clean, no willpower, and no real desire to live. It’s a way of committing suicide slowly, secretly hoping that one day it’ll all be over and you don’t personally have to do the heavy lifting, or deal with the aftermath.
Part of what saddens me about the relationship itself is that I defended, protected, and shielded this man. I was the epitome of devoted and loyal to the Nth degree. My love was genuine, and yet I was constantly criticized, going as far as to be told that I wasn’t good enough to be introduced to his parents, who for years, he told me were dead (I’d later find out he only wished they were.), because of our differing religions. Who the hell were these people? England’s Monarchy?! How isolated and ignorant were they to think their religion was the only one that existed in this world?! This was not the first time someone had taken issue with my religion and tried to make me feel guilty for it. I was considered “not Jewish enough” by one guy’s family, and now I was being made to feel like I was somehow inappropriate and shameful.
Suddenly, after years of knowing our religions were different, it became this big issue, and we fought about it a lot. Would I be willing to convert to Roman Catholicism for him? HELL NO. Would I sign a pre-nup? Whoa, where the hell did THAT come from?! You want to marry me, you’ve asked, I’ve accepted, but now you’re afraid I suddenly want to be with you for financial gain? Seriously?! Anyone who knows me knows that I’ve always taken care of myself. He knew that. I don’t expect a man to pay for my lifestyle. I’m fully capable of making my own money, buying my own clothes, jewelry, etc. I think you should want to take care of your partner and be a provider, but relationships are give and take. I did not expect to just sit on my ass and be given anything, so I waffled back and forth on that little tidbit.
The ever present “Would you please eat?!” grated on my nerves. He’d bring me food for several years of our relationship, but not in a loving, caring, concerned way (I do like it when I’m sick and a guy has the sense to bring me soup or Italian food. There’s something very nurturing about that.), but in an extremely controlling manner. As soon as I gained about 15 pounds from this constant influx of food, I was suddenly told the exact opposite. Now I wasn’t thin enough, I was becoming the woman who he didn’t want anyone else looking at. What was so shameful about being curvy? He’d have a fit whenever we’d be somewhere and someone else would check me out. I was not the one doing the looking, yet he was suddenly paranoid that anyone who checked me out was somehow going to end up in my bed. It was eye-rollingly ridiculous.
He’d do something shitty, and I’d be “rewarded” with jewelry or flowers, sometimes both, depending on the situation. It got to a point where I began to loathe the pink & purple roses I loved so much. To this day if someone sends me roses, I cringe inside. He would promise to be somewhere I needed him to be, but was almost always off feeding his drug habit, or as I would later find out through a friend, a habit for other women.
It was demanded upon me that I be 100% faithful. That was not a problem because I’d never cheated on someone before and wasn’t about to start, but because he was the one doing all the cheating, he started having people follow me to find out what I was doing every time I left the house. Stalker much?! It was sick. It was also an excuse.
I’d had enough after confronting someone he often had tail me, and I put my foot down. I’m not big on ultimatums, but he needed to hear what his behavior was doing, that it was unhealthy and damaging, and completely unwarranted and unacceptable. It came down to this: He needed to return to rehab, fully commit to it, and he then needed to be clean & sober for a year before I would agree to marriage. It was high time for him to prove that he was worthy of me, not the other way around.
He went to rehab for a few months, coming back apologetic, and for a while things were simply tense. We talked, but clearly he was refusing to hear me. He was about to do something he’d probably been considering for quite some time, and simply hadn’t been man enough to say to my face. The ring on my finger probably made me believe a slew of lies I was actually too smart to actually buy into in the first place, but there was something slightly blinding & intoxicating about it. But the truth of the matter is, it was just plain toxic.
The problem with relationships slowly turning abusive is that, initially, we think we’re in the right relationship with the right person, until suddenly we’re not.
For years after this relationship ended I’d hear “Oh, LET IT GO!” whenever I mentioned how hurt, angry, or betrayed I felt, as if emotions could be turned off like a faucet. How could I not feel all of those things?! Saying “I love you” is not a cure all. Actions speak louder than words. His actions were atrocious.
With a ring still solidly on my finger, he married someone else, just weeks after saying we were good and moving in the right direction, that he was trying. I had to find out via an announcement his new wife was sending to friends & family. He would go on to have several children with her pretty quickly, each time choosing names we had decided on for our future offspring. That was the icing on the cake. I seriously worried about my ability to be around him in any capacity after that, so I disengaged. I made sure that whenever he’d be around, I would not be present. Hurting someone you claim to love in such a manner is vile, but to then go on living your life as if said loved one never existed is even worse. I started to think I was losing my mind. If it had not been for the fact that I knew the relationship had occurred, and exactly what I had endured, I’d have felt like I was being erased.
He & I continue to have mutual friends. I’ve stopped speaking to all, but three of them because I’m tired of hearing the lies. “He asked about you.”, “He hopes you’re all right. He just wants you to be happy.”, “He cares about you.” PLEASE! He never cared in the first place, it was a fucking game to him. No matter how many times I would ask these friends not to relay anything he said about me, it would come up in conversation, until I finally changed my phone number and said “No more.”
Not one to eat bullshit politely with a knife and fork, I have gone out of my way to avoid him since all of this went down. In truth, I have nothing to be embarrassed about. I didn’t do anything wrong, except believe in a person I shouldn’t have given the time of day to, but hey, we all make mistakes. Avoiding him is my way of remaining a healthy, non-toxic human-being. I know that eventually, at some point, we will run into one another, and I pray that I am not carrying a loaded weapon that day or wearing particularly high heels because even though people tell me I’m not a damaging, harmful person to be around, and that I’d never willingly hurt someone, I cannot promise that the desire to harm him won’t be there. Some of the rage goes away with time, but any time the relationship is mentioned or I come across something from that time period, I am flooded with everything I thought I’d already moved past. For me, that lets me know the damage runs deep. It does not, nor will it ever, mean that I care about him. I don’t. I wouldn’t spit on this man if he was on fire.
Once I no longer love/respect someone, my emotions will often turn to pity, anger (at myself & the other person involved), & my anger is a burning rage that can simmer and bubble for years until it is truly out of my system. If the anger is unjustified, it eventually dwindles and the flames put out, but if it IS justified, stay the hell out of my way. I can go from zero to bitch in about half a second.
Unfortunately, there are so many different kinds of abuse in the world, that it’s sometimes hard to pinpoint if you are the abused or the abuser. Sometimes you are simultaneously both, even if you don’t intend to be.
Writing this makes me feel a bit like I’m back in Psych class, but I’ve been revisiting certain things lately, which is why I am writing about such a personal, private matter, but if what I’m saying helps even one person get out of a toxic relationship, then that’s important and necessary.
If you’re in any kind of relationship where your words and feelings are being defined in an incorrect manner, where you are constantly insulted, and berated, it is time to take a closer look at this relationship. Thinking this person is “the best you can do”, having low, little, or no self-esteem, or coming from a “people pleasing” type of family are all potential signs you’ve probably overlooked. Most people do. When you’ve been taught that everything around you is “normal” and a part of your daily life, you stop questioning things. You begin to lose your inner voice. Once you lose your inner voice, you start to become everything the abuser has defined you as. Your thoughts, feelings, actions, everything is now completely defined by someone else. Moreover, you question yourself and promise yourself you’ll be better for them, that you will do everything right, not realizing that your life is your own, it is not owned by someone else.
Believe it or not, I am a product of abuse. Not just from the relationship I am talking about, but from my childhood. I am very forthcoming about that fact when approached, but generally I keep such things to myself. However, when a person comes to me and needs help, I am the first person to listen, and the first to say something.
For many, many years I handled the abuse (verbal, emotional, and physical) by throwing myself into my writing and my singing. One day I snapped, I’d had enough. I was 100% committed in the fact that I’d kill the other person and spend my life in jail, but I believed in my cause because I was protecting two other people. I took the brunt of everything so they wouldn’t have to. To this day, one of those people denies that 99% of the abuse ever occurred. It must be nice living in such a warped bubble of false memories, but I know what I lived, I know what I saw, and it is sad for me to see this person deny the abuse and become the abuser themselves. If you correct this person, or disagree with them, they will say YOU are abusing THEM. It’s a vicious cycle, however, I know that by standing up and saying ENOUGH, and being committed to putting a stop to it, that I did the right thing. If I hadn’t, I’d be in jail right now. Or worse.
People are often shocked to learn that I’ve been through such things. I don’t deny being strong and confident, and I don’t deny that I will say something is wrong when it is wrong, regardless of who is saying it. I will admit to being wrong on the rare occasion that I am. But I will not allow myself to live a life of abuse. I won’t allow someone to define me, to disrespect me, to use me, to tell me what I think, to tell me where to go, or tell me what I am allowed to do. When someone behaves that way around me, I am very happy to show them the door. I know I deserve better.
I look for different things in people now, and I always pay attention to my intuition. It is an immense part of who I am. If someone or something seems too good to be true, then it probably is. If something feels innately wrong, re-evaluate it and follow your instincts. Intuition will never lie to you, but the heart will. If your relationship involves young children, get out NOW. You do not want your child/children to be affected by the abuse inflicted upon their mother in front of them. I know people that have stayed in these relationships because they believed that taking their children out of the home during the formative years was the worst possible thing they could do. It’s not. The worst thing you can do is stay and allow them to think that what they’re hearing, seeing, and living is normal. If you get out early enough, you will save yourself and your child/children a fortune in therapy bills.
Once upon a time, I was a moron. It won’t happen again, because I am firmly committed to not allowing it. No one defines me, except me.
*If you need help getting out of an abusive/unhealthy relationship or are living with domestic violence and don’t know where to turn please go to any of the following organizations for assistance: http://soarinri.org/ http://leavingabuse.com/, http://www.thehotline.org/, http://www.nrcdv.org/dvam/, http://www.teendvmonth.org/, etc.
Do not be afraid to search the Internet and Yellow Pages for additional resources available to you in your area/country. If your abuser uses the same computer, always be sure to delete your browsing history to protect yourself from additional harm, or go to the library if available and search for information there.*
“Once Upon A Time”, and all material herein, unless otherwise indicated and credited to its owner(s), is copyright © 2013 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
Editor’s Note: This is about two relationships that I combined into one story. It’s about a 70/30 split between the two. I was engaged to both of them. I can say in clear truth that the second person was a far better person than the first, and he did not verbally or emotionally abuse me. He simply wasn’t the right person for me because we wanted different things. He thought I wanted a lifestyle, which was not the case. I do not believe in giving up love, respect, loyalty, and fidelity for “things”. He wanted the “little woman” at home raising the kids in the amazing house, and yes, he would have been a great provider and a good father, but he didn’t realize that meant he’d have to be loyal, committed, and most importantly, faithful. I won’t settle for a half-life, no one should.
Somewhere Out There…
In Memory of my Grandfather, who to this day is still the finest man I have ever known. You are missed beyond words. I know you’ll always look after me. I am so proud of who you were and all that you gave me.
Ti amerò sempre.
For everyone who makes it sound like Fibromyalgia will get better or simply go away. Nice try. Making a photocopy of this for future reference.
The Pain Game: Trying To Stay Sane & Keep Yourself From Exploding
I don’t find anything even remotely amusing about pain. I couldn’t be any more unamused than I am right now. By pain I don’t mean a paper cut or your cat scratching you, I mean mind-numbing, nausea inducing pain. Suffering from a spinal injury, I am constantly being told that my injury is inoperable. That’s fine, because I’d never agree to surgery. I saw what it did to people I loved, and I continue to hear horror stories, which pretty much gives me a number in my head that the success rate for such operations is nowhere near as successful as surgeons profess. None of these “it will fix the problem” surgeries improved their quality of life or range of motion. If anything, it deprived them of a more complete life, but I understand that when you’re in pain and suffering, all you want to do is find a way to alleviate your suffering.
Last weekend (Saturday morning) I reached a very critical point in my own pain levels and decided to take a medication that is being used off label for Chronic Pain. That was my first mistake, because for the first time in a long time, I took the “Very high success rate for Chronic Pain sufferers.” statement and the numbers at face value. I didn’t look too deeply into the medication until it was already in my system, and by then it wasn’t like I could reverse it because it’s a time release drug with an extremely long half-life, one of the longest I’ve ever seen in any drug, be it for pain or not. For the record, I’m usually very on the ball about this sort of thing to avoid problems and potential allergies. The pain was just so bad, and I was irrational in my attempt to rid myself of it and be able to function. Instead, I was pretty much bed ridden for over a day and a half, in between dealing with some pretty vile side effects. Because I’d only heard ½ of the prescription instructions, and no one had ever told me to not drink water before and after taking it, the medication released into my system much too quickly. Less than 30 minutes after taking it, I damn near threw up on my laptop before returning to my bed to pass out for a few hours. After several trips to throw up and return to a passed out/asleep phase, I woke up at one point and realized I was completely pain free. I did not hurt at all from the top of my head to the tips of my toes. My muscles, which had been killing me earlier that day, my spinal injury which had been screaming for months on end, was completely silent. No migraines, no muscle pain, no physical pain, but a complete inability to eat or keep fluids down (big problem, since this medication makes me thirstier than anything else I’ve ever been on. Water does NOT aid nausea though, so I had to switch over to iced tea at some point. Unfortunately I couldn’t keep that down either. Ginger ale wouldn’t stay down, fluids were becoming pretty hopeless.). As it slowly started to trickle out of my system, I was finally able to eat and drink without problem, but I was still really concerned and waited until I thought I’d pass out from hunger before I allowed myself to eat. I did not want to endure any more “fly out of the room” moments to puke up my guts. It’s not something I’d like to relive anytime soon.
By Sunday night though, the pain had become unbelievable. I was fine and completely pain free, and the next thing I know, my lower back was completely shot. It felt as if I’d been doing heavy lifting for weeks without a break, lots of bending, digging ditches, you get the drift. The pain was so bad I could not sit, stand, and could barely walk. There was no relief in sight. My mind was screaming “partial paralysis” at me in a very bad way. I used a topical roll-on product easily found at Walmart called Max-Freeze. In the past, this product has worked for me and worked quickly. I’d apply it, lay down, and by the time I woke up the pain would be gone, or at the very least manageable. The problem this time around is that I couldn’t even feel the product working, because even though I know I applied it directly to the source of the pain, I couldn’t feel it activate on my skin. I panicked a bit and after a while, resorted to ice packs. I probably should have made my ice packs hot, but because of the Max-Freeze I chose not to. Eventually I was able to get in my bed, some of the medicine still coursing through my system, and I was able to fall asleep, but Monday morning I was still in pain, and still experiencing that “What the hell did I do to my lower back?!” moment. My brother asked if I had tried doing anything out of the ordinary while on the new pain medicine and I said “I could barely walk from the bathroom to the bedroom. Do you think I was lifting weights at the gym, or doing something that I already know would aggravate my lower back?! What damage do you think I did in a less than ten foot radius?” I probably sounded insane, especially with the slurred speech and sudden whiny tone to my voice. I tried really hard to hold solid in my belief that my lower back would eventually loosen up and I’d be fine, that maybe I’d twisted wrong or caught an air conditioning chill. With Fibromyalgia, you simply never know.
It is now Friday and I can sit, which is a huge bonus. There’s still some pain, but I’ve got other pain to focus on too. Pain in my head (the migraine that just won’t quit. I’ve had it for two days. It’s trying to break me. I’m determined to break it first,), pain from wisdom teeth (Yes, I still have both of mine. I never saw the need to have them removed. They shift and cause some pain a dozen or so times a year, but outside of that, they do not affect me much. Plus, I am not a big fan of oral surgeons. They creep me out. They simply take way too much joy in pulling teeth and ripping your mouth open. Some people are fine to go and leave with pain medicine, but I’m not one of them. If something has to be done, they’d better bring in the anesthesia because I really don’t feel the need to see, hear, or feel what’s going on.), pain in my spine, and that emotional pain we all know called depression.
In my attempt to rid myself of pain, I ended up wasting a week of my life. That’s extremely upsetting to me. Life is short, pain makes it feel so much shorter, and I want to live. It’s hard to live when you can’t sleep, or you sleep, but you sleep too much. It’s hard to live when your body is geared up for every twinge that hits you and becomes the next great battle. And outside of the pain you experiences physically, you still have a real life. Bills to pay, things that need to be done, fixed, etc. Pain makes you feel like your life is a disaster. When you feel this crappy, faking a smile, pretending you’re fine, and lying to yourself to get through the next hour is just plain unacceptable to me. If I don’t feel good, I say so. Not because I want someone’s attention, a response, sympathy, pity, or anything else, but because it’s the truth and I refuse to feel ashamed because I suffer from more than one form of Chronic Pain. People usually say “I’m sorry you don’t feel good.” or “I’m sorry you’re in so much pain.” and my response is always the same. “Did you cause this pain? If not, don’t apologize for it. It is what it is.” I am a firm believer that I probably take on pain for those not strong enough to handle it, but honestly, I’ve had enough. I’d like to check out of my life for the next ten years, pain free, and do what I want to do. I want to live, I want to get up and go, I don’t want to deal with stress, anxiety, or all the other things that come along with the pain. I don’t want a half-life.
Am I being a kvetch? No, I’m being honest. The “pain game” is not a game I want to play. I wouldn’t wish this on anyone (except maybe Hitler, but honestly, Chronic Pain is too good for him.). I appreciate having a voice and a forum where I can say “I’ve had enough.” and no one judges me for my honesty, but I’d also like to use that voice and that forum to discuss happier, more successful things. I’d like to be able to say that I can get out of bed and feel good each day, or simply that I can get out of bed. I’d like to say “I laughed ‘til it hurt.”, but not because the pain is unbearable. Unfortunately, the pain IS unbearable, I’ve had enough, and I’d like a new alternative that doesn’t kick my ass and torment me. Doctors and scientists are making all kinds of advancements, yet they claim they know too little about the brain to help Chronic Pain sufferers. That’s bullshit to me. If one in every three people that sufferers from some form of Chronic Pain got a grant and became a doctor or a scientist, I guarantee we’d have better medicine and eventually, a cure. I’d like better medicine and a cure in my lifetime, and I’m sure everyone else that suffers would too.
I’m sick of all this crap. It’s time for a change.
“There is a particular kind of pain, elation, loneliness, and terror involved in this kind of madness. When you’re high it’s tremendous. The ideas and feelings are fast and frequent like shooting stars, and you follow them until you find better and brighter ones. Shyness goes, the right words and gestures are suddenly there, the power to captivate others a felt certainty. There are interests found in uninteresting people. Sensuality is pervasive and the desire to seduce and be seduced irresistible. Feelings of ease, intensity, power, well-being, financial omnipotence, and euphoria pervade one’s marrow. But, somewhere, this changes. The fast ideas are far too fast, and there are far too many; overwhelming confusion replaces clarity. Memory goes. Humor and absorption on friends’ faces are replaced by fear and concern. Everything previously moving with the grain is now against– you are irritable, angry, frightened, uncontrollable, and enmeshed totally in the blackest caves of the mind. You never knew those caves were there. It will never end, for madness carves its own reality.” ―Kay Redfield Jamison
“Did you wake up on the wrong side of the bed?” It’s often a bit of an odd phrase/question, especially if you wake up on the same side of the bed most mornings (or for those of us who suffer from any form of depression or chronic pain, whenever the hell we are able to wake up, thanks!), but today I definitely woke up as Vicious McVickerson.
I’ve been having some very real problems with post-concussion syndrome for the last month or so. I’ve had concussions before (I could rival most hockey players, and that’s not me being cute or funny. I had my first documented one before age 3. My second was acquired by age 4. Way too early a start, believe me.), but the side effects have, up until now, rarely started to slowly change my life. Other than migraines and a lot of the Fibromyalgia/Migraine related side effects that a lot of people are familiar with, I’ve pretty much stayed the course with small doses of weirdness thanks to old gymnastics injuries, but this time around, it has affected so much more than I thought it ever would. Seeing stars the next morning should have clued me in, but I was trying to stay calm and positive. I’m an idiot. You’ll never get me to admit that openly again because I refuse to make the same mistake twice.
My memory is really horrible. Post-It Notes and notebooks are my new best friend, but finding and keeping a pen is hard because I am constantly putting them down, throwing them into my purse, my laptop bag, my nightstand, you get the drift. I can lose and systematically re-locate about ten pens in a day, it’s awful. I go into rooms now and have absolutely no idea why I’m there. It might take me an hour to remember why I walked into the laundry room, the kitchen, or even the bathroom. I just stand there and say “What am I doing here? Did I need something?” I’ll walk upstairs and stand at the top of the staircase with a questioning look on my face, and suddenly remember I need to be downstairs.
The nausea, dizziness, balance/coordination issues are insane. I’ve also noticed some changes in my vision, and in the severity of my headaches, so I am going to get my eyes checked ASAP to make sure everything is status quo. The only thing I should need is a new prescription for contacts and glasses, and hopefully that is all that will be found since I won’t be able to make it out to my normal eye doctor who is familiar with my case and who I trust. I hate not going back to her this time around, but I honestly can’t sit for 45 minutes, or longer, just to get there, and then have to do it all over again to come home. I don’t have the patience to sit and focus, and my pain levels, while significantly lower for now that the weather has gotten a bit tamer, are slowly creeping back up. Stress is not a PCS sufferers’ friend, which rings true for PTSD, and chronic pain of every kind.
Today is a blah day for me, even though it’s gorgeous outside, unlike yesterday where the entire day was primarily dark grey, cloudy, and had more than its fair share of torrential and less intense downpour. I think the world will be a better place if I just stay in my room until I calm down from whatever it is that set me off. I’d rather growl at the right people, as opposed to those who don’t deserve it. Call it community service. LOL.
I’ve mentioned it in passing, and some people have picked up on it and others have not. My primary focus with this blog is to promote my writing, on whatever subject I choose to tackle on any given day, and lockeandkeyenovels.wordpress.com is the blog to promote the books I am writing. So, you get both an author’s blog by being here, and a “You can follow this author now and be able to say you knew about her work first.” blog, possibly scoring some advance reader copies along the way. Again, this one is about my writing and, to some degree, me. It’s not about me in a selfish way, but definitely in a “Lets chat about this” fashion. If sharing my experiences can also help a person along the way, fabulous.
I was officially diagnosed with Fibromyalgia in 2004. All the doctors that should have caught and diagnosed it did not. I remember asking my primary care physician about it a year or so before I was diagnosed, and not only did he know very little about it, but he was also convinced I had “something else”. If I had been of a lower intelligence level, I might have accepted that. I might have just continued taking medicine for pain 8 times a day, and the accompanying prescribed muscle relaxers for when I really needed them. An estimated 12 million people suffer from Fibromyalgia, and possibly another 10-12 million are being incorrectly diagnosed. The word itself carries the weight of the unknown, for doctors and patients alike.
My diagnosis took an exceptionally long time to come to fruition. It was traced back to years of pain, originally attributed to “strange growing pains”. I’d be complaining and crying about the pain that always felt like it was seeping out of my bones and spreading through my body, while still under the age of 10. No one took me seriously, but it was very hard for my mother not to notice. She had me tested for arthritis and a few other things that can pop up at a young age, and more than one doctor told her I was fine, that I’d “grow out of it”. How wrong they were.
I became a gymnast at approximately age 4 and as a result, I did end up with some residual injuries that effect me to this day. One injury in particular landed me in the hospital. I was mostly a bars, floor, and beam girl. I was addicted to the parallel bars and the uneven bars. To this day, I can still remember my routines and I often find my mind doing them in my sleep. That’s how much I loved it. I was lucky, I didn’t spend a lot of time falling onto the mats beneath me, but somehow, I still ended up with some bizarre injuries, this one being amongst the worst.
My right hip and leg had damn near popped out of the socket, of their own accord mind you, because the pain I experienced for several weeks became far too much for my body to tolerate. I could barely walk, and when I was finally brought to the E.R. by my parents (No, they were not negligent, but they believed I had a charley horse, that it wasn’t anything super serious.), I had to be carried. As a result, I ended up in traction for a week, while every single test imaginable was run on me. By this time, I was completely knocked out on codeine, pain free in the moment.
I didn’t have one doctor, I had a “team”, and let me tell you that my mother nearly threw the “leader of the team” out a very high hospital window when he informed her that HE was “in charge” and would be making “all of the decisions“. She, in her infinite wisdom, informed him that she was the parent and as such, SHE and my physicians, whom she knew, were the only ones “in charge” of anything, and that it might be best for all involved, but especially him, if he left the room and never came back. We never saw him again. I’m pretty sure he went back to England, Australia, or New Zealand after the charming encounter that clearly let him know that the only thing he’d be “in charge” of, was how quickly he could escape the room, and the hospital.
I was tested for Lyme Disease because I often spent part of my summer in Boston and at the time, Massachusetts was considered a “danger zone” where ticks were concerned. Even though I was, and remain, the furthest thing from “outdoorsy” and had only been to the beach in Maine & Cape Cod, and Walden Pond, they insisted on running a full battery of tests for Lyme. The doctors were baffled beyond words when test after test came back negative. Alas, they thought they were missing something, and continued to run tests multiple times a day, requiring more blood than a TV vampire. Every test told them absolutely nothing. In the end, right before I was released on crutches, which was how I would spend the next eight weeks, I was told that an ear infection I’d had many months prior had probably never really gone away and settled into my hip, thus causing “this incident”. Are you buying that? I sure as hell didn’t. I rolled my eyes, hopped off on my crutches, and that was seemingly the end of that extremely painful ordeal, though I did have to follow up with an orthopaedic specialist for several months after all that which wasn’t fun, because he was convinced he’d find some secret message lurking inside my bones. He never found a secret message. If he had, it would have been reduced cartilage in my knee!
The next injury occurred during my final year as a competing gymnast, and as Captain, this was serious. I was on the bars, practicing a routine, and heard an extremely creepy sound come from my neck. It’s a sound you never forget, because you know it is life changing, and the second I heard it, I was terrified. In that moment, I was paralyzed from the neck up. I have no idea how I managed not to fall. I held still for maybe 90 seconds or possibly as long as 3-4 minutes in an extremely awkward position with my arms firmly in place, holding all of my body weight. My arms and shoulders never faltered, and when the paralyzation cleared itself up moments later, I did what I normally did. I shook myself off, finished the routine, and the subject never came up until many years later when the damage to my cervical spine showed on an MRI and my neurologist couldn’t imagine how I had done such damage at such a young age. He told me I was lucky I had movement of my neck at all because the nerves going in and out of my spine from the top all the way down to about C6, were being pressed on and shifting, and that’s what was causing me all the pain I had been experiencing for months. It’s the kind of pain that makes me want to come out of my skin. It limits some of the movement in my neck in terms of turning my head, and it limits some minor movement in upper body, but most of the time, unless the pain is at an all time high, I forget it’s an issue. I often have to remind myself that it’s there if it hasn’t acted up in a week or a month, providing I’m ever that lucky. I’m rarely that lucky. On an almost daily basis, this pain surfaces in some way and causes me grief.
Anyone that suffers from any form of chronic pain knows that when we’re not in pain, lets say we’re having a good hour or a good day, it actually takes us a while to realize that we’re not suffering because our bodies have become tightly programmed to handle our pain. We’re tensed up, our muscles hurt, we’re bracing ourselves, so when we’re not hurting at all, it takes a while for the body to completely relax. The only time I have a good day, or a series of good days, is when I am on vacation. The second I get on a plane, I am able to leave a lot behind, but as soon as I know I have to go home, my body goes right back into pain mode and it can take me weeks to recover from being gone for 7-14 days. It’s not a pleasant cycle. One of my doctors suggested that my pain might just be situational, but I suffered quite a bit the last time I went away, spending an entire day of my trip in bed, not able to move a whole lot, so I really don’t buy that, though I do tend to over-do it physically when I’m on vacation. I push myself more to exercise, to eat well (being away makes me realize that I do make healthy choices and that I don’t eat anywhere near as much as I imagine I do.), to walk that extra mile, because at home, it’s extremely difficult at times just to get out of bed. I have more caring support when I’m away, and I think that has a lot to do with how I feel when I get out of dodge.
No one will ever be able to tell me for certain what truly triggered the Fibromyalgia. It could have been my concussion history, which rivals that of most NHL and NFL players. I got my first one at around age 3. I have fallen on ice and done some stupid things, but my concussions were never intentional, except for the moron that smashed me in the face at a parade with some kind of beam, leaving me with a concussion and a black eye. It could have been my gymnastics injuries. It could have been mental and/or emotional trauma. It could have been two separate car accidents where I was the passenger. The doctor that told me “Your body mass produces pain.” might be right. Or, as a few suggested, it could just be that I have a hereditary predisposition for it. Where did they get that idea? From the fact that more than one person in my family suffers from migraines, as I do, and that more than one person suffers from chronic back & neck pain, as well as the fact that arthritis is in my family history.
Every doctor has a different story, and yet, none of them are specializing solely in Fibromyalgia. Many do not believe it even exists, so you often run into doctors that treat you like you’re some kind of drug addict looking for a fix, as opposed to someone who is in so much pain, you’re truly there just to be HELPED. I’ve seen doctors turn from professional to asshole in less than a second, as soon as they hear the words “Chronic Pain” or “Fibromyalgia”.
Initially when my Fibromyalgia was officially diagnosed, I was referred to a pain clinic. I’ve heard both good and bad things about such places, but my experience with “pain management” and “pain clinics” has been anything, but positive. After going back & forth with a lot of negative things from such places, I finally called a place that came highly recommended, asked if they took my insurance, and they told me they could see me…IN THREE YEARS! I was very respectful, mildly inquiring as to why the waiting list was so long, and was given a 20 minute lecture on how burn victims suffer so much more than the rest of us seeking treatment, thus, they come first, so even if I made an appointment, it could get pushed back even further if additional burn victims come to them seeking help. I’ve suffered minor burns that hurt like hell (I’m a great cook, but occasionally my common sense when reaching into the oven is incredibly scary. I don’t even realize I’m doing it half the time, because I’m so incredibly distracted with preparing a nice meal and getting it plated and on the table.). I do not, nor would I ever, denounce a burn victim’s level of pain, but when a receptionist is basically telling me “Make an appointment, but we’ll do our best to fuck you out of it.”, I find that extremely off-putting. No one who suffers from chronic pain of any kind wants to be treated as if their pain is “not as bad as you’re making it sound”. Really? Try living with it for a week, you’d be on the floor crawling over what the rest of us suffer through every single day of our lives, with strength and dignity. Yes, this topic angers me beyond words.
The next few “pain clinics” aren’t actually about helping you manage anything. They do nothing, but perform epidurals all day long. I was beyond appalled. I called my doctor and he was mortified, immediately pulling these “clinics” out of his referral list. I told him I really didn’t feel I should have an epidural, unless I absolutely needed one, and he agreed with me, saying that if I needed one during childbirth up the road, it could fail on me BIG TIME if I’d already had too many, especially if they aren’t done correctly the first time. For me, all these pain clinics were the same. No, I don’t need you to teach me biofeedback, thanks. No, I don’t need you sticking a giant needle into my spine, possibly causing more pain and more damage. Certain types of needle based treatment involving the spine can trigger migraines for me, and I suffer enough, so I don’t go looking for new forms of torture. Interestingly enough, tattoo needles do not bother me in the least. I should be studied, I know.
Currently I am between doctors and treatment for the pain. My primary care doctor dropped me as a patient, he never even bothered to say “Hey, I haven’t seen you in a while. Could you come in so we can go over your treatment plan?” Nothing, no communication whatsoever. He canceled a prescription medication for my spine that I should not have been allowed to go off of cold-turkey, and then he had a receptionist call and dismiss me as a patient. Nice, right? Professional to the Nth degree. <rolls eyes> I’m not exactly weeping over this, the man is way too young to have such a gigantic stick up his ass, and my immediate reaction was not very receptive where he was concerned. I can be terribly judgmental where doctors are concerned, especially when they are unprofessional and rude. I will find another doctor, but right now, I’ve got bigger fish to fry, incredibly huge battles in front of me, and I’m delicately paddling my way through shit’s creek. It’s not pretty. I’m doing my best, but it’s sucking the life out of me. I’ve already had a pretty horrible 7 months of agony and struggle, and just found out the other day that apparently, that will continue. The status quo really lets you know where you stand sometimes.
I hope & pray that things will get better really soon (not just for myself, but for all of us who suffer), so I can go back to focusing on my health. No one that suffers from chronic pain of any kind needs huge setbacks that pull him or her away from what is truly important. You cannot win wars if your health is failing on you. You can’t fight the battles, slay the demons, and rise up out of the ashes if you can barely move.
As a warning to everything and everyone I’m about to face, please know that I am a ruthless bitch when I have to be. I’m not going down without an epic fight. I have had enough taken from me in this life, I’m not about to allow anything else to go, not when it’s within my control to do something about it.
As a side note: To the world’s largest shipping company, I am coming for you motherfuckers. Settle up and back down, or I will use every single connection I have to do what I must. That, my friends, is the power of a pissed off woman. You don’t fuck with my family. Some people really don’t get it, and they’re usually the ones that need an unlubricated size nine up their asses.
Pain, Loneliness, & Memories
“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.” ―Lois Lowry
To all of us who share…
Pain & Prayer
“When the pain is at its absolute worst and you know you can’t tolerate another second, say a prayer that it will never get worse than it is right this minute.” ~SRPR