Ultimately, we should all do research beforehand and make the decision that is right for us.
Veteran’s Tragic Suicide Note Leaves CNN Host Speechless, Forgive Me This Is Tough
*Yet, I get condemned for stating the obvious. No one should EVER have to feel this way and I agree, the medical community is afraid to treat thanks to the DEA’s fear tactics. I’ve had two of my treating physicians paid visits by them for barely prescribing pain medicine to migraine and pain patients. How is it wrong to give a patient 5 pills because she’s moving to a new state and you don’t want her to end up in the Emergency Room? It is wrong to be a doctor and NOT be able to treat your patients as you see fit. After medical school and completing your residency, you’re licensed to be able to prescribe medication and, most importantly, help people. If you’re being crippled by the government, you might as well NOT go into such immense debt to become a physician.*
This is how I felt dealing with my pain levels last night. =(
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.
It’s Not Writer’s Block, It’s ‘Pain Brain’
I’ve been writing for so long that it generally comes easy for me, even when I’ve had weeks full of coughing fits (If anyone knows a cough medicine that really works, feel free to clue me in. All the various 12 hour versions aren’t doing a lot for me unless taken immediately before falling asleep. Sleep doesn’t always happen for me at the moment.), physical pain, horrific migraines, and burn out exhaustion. And yet, I still have creativity alight in my brain, firing off all kinds of ideas.
Like most writers some of best ideas come to me in the shower, or as I’m drifting off to sleep. I often have to decide if I’m going to fall out or if I’m going to shake myself awake and jot something down. I can hear myself as I’m drifting off saying “I will remember this in the morning.”, as a mantra. Every so often I wake up out of nowhere at 3, 4, or 5 in the morning with an idea that must be done Right.This.Minute. Sometimes that demand takes 20 minutes, and other times it means I’m going to lose some serious amount of sleep as I sit in front of the computer and pour whatever it is I was thinking out until I am completely drained. The important thing is that I listen to my intuition, my inner voice. When it wakes me up and has something to say, I try to listen and write carefully.
I will never be one of those writers that says “This book came to me in a dream.” or “This character came to me when I was doing <insert random task here>.” I definitely believe that we are all given signs and shown things that only we would know are messages meant for us, but I’m also a firm believer that it’s what we do with those messages that makes things happen. If something pops into your head, but you never put ink to paper, then you’ve missed out on an opportunity and you have no idea what direction it may have taken you in.
The other night I was trying to sleep, but I couldn’t. I absolutely refuse to be the person that tosses, turns, and throws pillows around until morning, it’s incredibly fruitless and even more exhausting, so after 20 minutes or so I grabbed my Kindle and went back to reading. A few pages in on something that has absolutely nothing to do with what I am writing, a character popped into my head. I could see her, plain as day, except she was anything, but plain and she demanded to be written into creation. I immediately put the Kindle down and added her to the cast of characters for Book 1. I’m completely charmed by her, and I think people will love her when they meet her. She’s unique, and even though I’ve repeatedly said I did not want to delve into certain areas of mythology, sometimes we don’t really have a say when a character that rich shows itself. Again, it’s about listening to your intuition. This was a character that refused to be ignored. Most of my characters are like that, but somehow they all seem to fit together within the world I have created. Lots of strong personalities that, under normal circumstances, might be difficult placing into a room. On paper, the possibilities are endless. Things you can’t convey in other ways can always be conveyed in book form.
Don’t get me wrong: I spend plenty of time staring at what I’ve already written, unable to do more than add a sentence here and there, if that. ‘Pain brain’ is incredibly hard to work through. I have a very high threshold for pain, but certain things are too much for me and really put me out of commission. I have to be careful with other things because if I move around too quickly after a migraine, it will often resurface with much more intensity than the previous migraine. If it’s my neck or my shoulder, it can flare up again just as quickly as the pain went away. I forget sometimes that I have some physical limitations, but I try to remind myself that the areas in which I am limited are not the areas that really count. I may not be able to clean the house from top to bottom in a matter of a few hours any more, but there are so many others things I CAN do, so to put myself down and attempt to diminish my accomplishments is what I call “self-abuse”. I’ve “self-abused” myself for so many years. It’s a different kind of harm, but it’s still harmful. In order to be healthier in mind, you have to turn off the negativity that will insult you if you allow it. I am trying to accept myself and practice what I preach. I give amazing advice, but I have a hard time following my own system.
In order to be healthier in mind, I constantly remind myself that the pain is not something I caused or asked for, and that despite knowing I will have it for the rest of my life, that does not mean I should stop living. It might mean canceling plans here and there, or waking up and knowing that today is not the day to run errands or whatever it is I had planned, and I can only hope that the people in my life who truly love me will accept that.
Yes, when you have a pain disorder of any kind, sometimes your friends and family don’t understand. Many do not want to understand, there is a difference between the two. I suffered from this pain for a very long time before receiving an official diagnosis, and to this day I still have a family member who doesn’t believe it’s real. He wants sympathy and compassion for anything and everything he is going through, no matter what, but will not give it in return. I don’t have a lot of patience for that brand of thought, or the ignorance and hypocrisy of it. So it comes down to this: Anyone that cannot accept that you have a very real problem should be shown the door. It might be painful, but trust me, in the grand scheme of things you will feel a lot better for telling them exactly where to take their ignorance and negative attitude. This pertains to a lot of things in life, but sometimes, no matter how much you may love someone, you’ve got to let them fly. Don’t accept horrible treatment from anyone simply because you think it’s what you deserve. No one deserves to be treated like garbage because they suffer from something that they themselves did not cause. No one deserves to be told they don’t want to do something, and that they’re faking pain. I know too many people who suffer from various pain disorders. When you can’t move, you are definitely not faking it. When every part of your body hurts beyond words and you’re in tears from it, you’re not faking that.
Do not let pain discourage you or allow it to put an expiration date on your dreams. Find different ways to accomplish your goals and remember that other people know what you’re going through, even if the people you should be able to rely on don’t. Believe me when I say that you cannot describe the color blue to someone who is intentionally blind. Far too many people listen without hearing, and look without really seeing. Don’t suffer fools, you already suffer enough.