Sorry For The Silence

I know I’ve been pretty silent these last few weeks. For one, I haven’t had a whole lot to say. I’m very in my own head right now. Sometime Thursday night into Friday morning, I did something to my neck and aggravated my neck and shoulders. I thought icing it up and getting some rest would help, I went out of my way Friday and today to avoid excessive stress, but it has progressively gotten worse, so I am strongly considering another ER visit, this time to a different hospital, because I’m afraid that partial paralysis is setting in from the neck up. The hospital I went to previously doesn’t have the necessary equipment (an ER with no MRI machine?! REALLY?! I’ve NEVER heard of that before, not ever.), which is extremely odd to me, but hey, that’s probably why I never have to spend time in their waiting room for more than three minutes! I can turn my body if you’re talking to me, but I can’t turn my neck because of the excruciating pain and the simple fact that it jerks itself back with a giant NO. The pain medicine isn’t working, and I don’t want to risk taking something that could make me sick again, so if this is still the same, off I go. At the very least, maybe they’ll be able to tell me what’s wrong since no one else has had any answers for me in the past three years. Plus, a prescription for muscle relaxers right now would seriously be my saving grace. You know things are bad when muscle relaxers are really the only thing that help you heal. I have an allergy, so I can’t take anti-inflammatory meds, and like I said, my neck is not responding to the pain meds. I don’t want this to get worse, obviously, but I think a stupid part of me is expecting it to heal a little on its own with lower stress and rest. The truth is, I’m tired of going through this shit all alone. It’s hard to psych yourself up for medical help when you have no idea what the end result will be, and how you’ll be able to handle it afterward.

In the meantime, I’m going to apply some arnica and try going to bed. I could do worse.

Nurses

Nurses

I take great issue with the medical field on a whole, but as someone with doctors in her family, I can only hope they also know that nurses are often smarter than they are, they’re the ones that spend the most time at the hospital, the ones who do the most “caring”. I’ve known some great  nurses in my life and have had to tell many off for various reasons. However, this article caught my eye this morning and after the last few weeks of enduring so much crap, this story sort of broke me into tears. It would be very sad for anyone to read this and not be able to shed a single tear. I know I did. It definitely put a lot into perspective for me as well. So, know that it’s sad, but I still encourage you to read it.

http://www.huffingtonpost.com/mike-spohr/nicu-nurses-on-the-wings-of-a-nightingale_b_3353060.html?utm_hp_ref=parents&ir=Parents?utm_hp_ref=parents&ir=Parents&icid=maing-grid7%7Cmain5%7Cdl4%7Csec1_lnk2%26pLid%3D324152

Two Full Weeks

Two Full Weeks

As many of you know I have been without power since 9:30 a.m. on May 13th. It may not have been “Friday the 13th“, but it was still a supremely bad day for me. It’s cause is personal and yes, I am angry about it. Too many people presume that kindness equates to weakness. In my case, it really, really doesn’t. This has really made me re-evaluate a lot of things in my life, especially as I embark on week 3.

#1- I watched an insane amount of TV prior to not having power. I am sure that won’t change once the power goes back on (Please God, SOON!), but not having a TV, DVR, Blu-Ray player, OnDemand, or even a battery operated radio has shown me that I waste a lot of time. Knowing that doesn’t make me feel very good, despite the fact that I never, ever spend days on end in front of anything. A few hours here and there when I need to clear my mind. I suppose the things I watch are kind of like cigarettes & alcohol in some bizarre analogy, though far easier to “quit”, even if only temporarily. Besides, we all have a show or a movie that we can watch on a loop, that we love. I worry about people who don’t have one guilty pleasure in that sense.

#2- I’ve been dealing with some supremely unhappy, tumultuous, potentially life-altering things in my personal life for quite some time. Not just my physical health, but my mental health as well. When my health insurance was unceremoniously cut back in November & my therapist called to say she couldn’t see me until it was reinstated I said, “There goes my sanity.” and she LAUGHED. Since when is a person’s sanity a fucking joke?! She laughed and said “You’ll be fine.”, and that was the end of that conversation. I was dismissed, abandoned by someone I had come to trust, and it’s definitely affected me and how I deal with new people.

She & I have a great rapport, I am 100% myself with her no matter what, so believe me when I say that when I go back, she’s going to catch absolute hell for that comment, as well as for the message she left me back in January when I called her mid-breakdown. A message in which she stated that she couldn’t talk to me unless I had insurance and/or an appointment to see her, and that I should go to the emergency room. Guess what people….. ER’s are NOT equipped to handle depression of any kind, unless you want to harm yourself or you want to be hospitalized. They’re equipped to handle it if you’re over age 55, but God forbid you be under age 55, you’re basically shown the door. Is mental health in this country nothing, but a fucking joke to people?! Personally I don’t find anything amusing about it. How many people over age 55 are shooting up schools, going back to their former place of employment and killing people after being fired, etc.? I’m not saying every single situation of that nature has involved mental illness, not by a long shot, but being told to “Go home and take a pill.” is a seriously grave insult. Not just to me, but to many others. My recent ER visit did involve me inquiring about help for depression & anxiety and the doctor wouldn’t even come downstairs to speak with me. I explained that I just wanted to find a balance while I go through the process of having my insurance reinstated. I was referred to a different hospital for treatment, and simply handed Map Quest directions after they spent hours amping up my blood pressure (unless you piss me off, my blood pressure is never 170/110. For me, that’s not normal in the least!), and running tests to determine the extent of my previously aforementioned concussion. When I followed up on their referral to the other hospital, I was informed that they ONLY handle hospitalizations and that I needed to call a different facility that could handle “my type of problem”. Nice, hmm? The third place hasn’t even called me back and it’s been over a week, so either they’re not good at returning phone calls or they really don’t give a flying fuck. My guess is the latter.

I am still feeling the effects of the concussion and trying to recover slowly. I already know it can take weeks, months, or years to be “back to normal” after a severe concussion that literally made me see stars. Right now, just putting my hair up makes the “smack spot” ache like I just bashed it into the armoire again. Forget a ponytail or anything complicated, I might as well just stay in bed and cry. That’s ok, I don’t have to be pretty, I just have to keep it out of my face and off my neck.

Back to the point at hand: Telling me, or anyone, to “take a pill” is only apropos if it’s a headache, or something minor that responds to medication. Why would anyone listen to that kind of “medical advice” (and I use the term so loosely I hope they can hang themselves with it.)?! It’s NOT medical advice, it’s the beginning, the very start, of malpractice. Watch for it closely. It’s easy to see. Doctors of late only care about Covering Their Own Ass, not so much about helping a damn soul. Why spend money to go to medical school if you can’t follow something as simple as the proper etiquette of your job?! If you are an inadequate doctor then it is your duty to find one who is not inept. The last time I checked “Do No Harm” was more than just a canceled TV show (But hey, if Steve Pasquale was my doctor, I’d definitely go into the office more often. Someone get him on a new show STAT! I am mesmerized by my fellow Scorpio, despite his being married, which does ruin some of the fun for me. LOL.).

#3- The writer finally has time to immerse herself in reading. I’ve read about ten books that I’ve been putting off, and I’ve got another 8 on hold. It’s been a really long time since I’ve utilized a library for reading purposes, but I’ve been having a blast reading and returning books in such quick succession.

If you have never read anything by Chris Kuzneski, I strongly urge you to do so. I’ve read almost all of his books thus far and I’m about to read Death Relic. He is remarkably talented, a total hidden gem. You can learn more about him at: www.chriskuzneski.com. Chris has great characters, their sense of humor and dialogue tends to crack me up.

As for other books: I stayed up ‘til 5:00 a.m. the other day reading Divergent. It was so good I read it a second time before I returned it. I’m enthralled with this story and I am going to snag Insurgent ASAP. If you haven’t read it, I strongly urge you to find a copy. I’ve got a date with my local Walmart or Target as soon as humanly possible for both of these books.

#4- I’ve had no time to write. That’s one of the down-sides of not being able to plug your laptop into the wall whenever you please. I am at the library 2-4 days each week to check e-mail, re-charge my laptop, Kindle Fire, and cell phone. These have become my life-lines. Just keeping a little food on hand is a struggle without a working refrigerator. I am NOT looking forward to cleaning it out once the power comes back on, but I’m glad there wasn’t a lot in it to begin with. That will help. That, paper towel, and a full bottle of antibacterial spray. If you knew just how much I hate to put on gloves and clean anything smelly, you’d know the look on my face is one of total grossed out disgust.

In this vein, things aren’t all bad, but they’re definitely not all good either. People keep asking me when my power will be back on and the answer is: I don’t know. I have already had to sell some extremely personal items over the last five months to try and keep my head above water, and am now looking for another item I can sell to get them to turn me back on. A newer client I was editing for screwed me out of her remaining payment plan (to the tune of $1700, so anyone who thinks they’ll be getting their work for free via BSF has got the next thing coming. Payments have to be made, unless you pick up the phone and make arrangements with me for less on a payment here and there. I’m agreeable, and I “get it”. I am well aware that we all have bills to pay, that many of us are struggling, that the economy sucks, etc., but this is my livelihood, and my electric company was completely unwilling to work out arrangements with me. In fact, they shut me off without even notifying me, which is illegal, yes.). That’s how this happened. Anyone willing to take me on as their editor and pay me in small amounts so I can get turned back on will get my very best editing and will, right now, be my only client, so if you need someone or you know someone that does, give me a holler. E-mail me immediately, I will get back to you as quickly as I can.

So, there you have it folks. My life is insane right now, but I am doing my best to put it back on track. Wish me good luck, I definitely need it. If I owe anyone a response to an e-mail or message, I promise to get back to you ASAP.

Hugs to all…..Li

Pain: Life-Altering

Pain: Life-Altering

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.