100% brand protection. Do a quick search on all the MLB players that have had to retire due to concussions, and then look at the very LONG list of NHL players that have lost so much of their normal ability to function due to concussions. I have a professional hockey player type history of concussions that began when I was under the age of 4. I’m now hitting double digits and doctors refuse to take me seriously and realize just how much this has affected my life. People seem to think anyone that isn’t an athlete is faking these symptoms, but it can and it does happen to people who are no longer athletes or never were athletes to begin with.
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.
“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.
This concussion has really done a number on me. I finally got the headache to stop, but sleeping last night was difficult. I couldn’t find a comfortable position that my head and body both agreed with, so I struggled quite a bit, and then I was up at an un-Godly hour worrying about trash pick-up and recycling. Where did that come from?! I have no idea. Today it’s extreme sensitivity to sound (more than usual), dizziness, balance issues, and my brain just doesn’t seem to be able to hold on to a coherent thought. It feels like someone slipped medication into my system, except I know that didn’t happen. And of course, the actual spot I hit is now starting to show the damage. Initially I expected blood and lots of it, but it’s basically the beginning of a nasty contusion that I’m sure will continue to hurt until it’s completely healed, which can take months. I have a hard head, but now both sides are experiencing those little twinges of pain whenever I turn or move too suddenly, and the birds that have been shrieking in my trees since 4:00 a.m. sound more like trains going through my head. Whatever happens, I am hoping for a halfway decent, possibly even restful weekend. It is Thursday, right?
My original blog for today will be postponed by a day or so while I recover from a concussion (the true recovery will take much longer, but right now my head is increasingly more painful than it was a few hours ago.). It was 100% my fault. Don’t ask me why I think I can walk around in the dark and not hit anything, because I always hit something. Usually it’s my leg or my knee on the edge or the foot of the bed, leaving behind all kinds of attractive bruises. Late last night, it ended up being the corner of the top of my armoire meeting the left side of my head in a very scary way. I didn’t scream because it was late and I didn’t want to wake my neighbors, but I feel so much more stupid about it today, because as the day has progressed, so too has the pain.
Thus, I’m relaxing on the couch, catching up on some things I haven’t had the time or the patience to watch, and icing my head. Sounds thrilling, I know. Pretty soon I’ll have to walk around the house in a glammed up hockey helmet.
Enjoy your evening everyone, and watch out for your furniture, you never know when it may attack!
P.S. Happy Beltane to my fellow Wiccans!
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.