Friday, March 30, 2012

Vision For The Future

Some odd years back I made a "vision board". It was actually just an 11"x14" Lucite picture frame box, but inside it I put images of the life I wanted. I cut out inspiring phrases and tantalizing images from various magazines. Everything from God, career goals, marital expectations, dream houses, fancy cars and travel destinations. Puppy dogs, charitable causes, convictions, beliefs and inspirations. All the things which make up me. At least the me I wanted to be. I was really struggling to define myself at that point in my life. I was newly married, my career was not forming into a cohesive vertical path, I was battling depression and did not know what I wanted out of life. So I put together the things I thought would bring me meaning, stuck them onto a piece of pink construction paper and hung it up in the vanity area of my bathroom. Every morning as I got ready for work I stared at that vision board. Slowly I started to make some headway in my life, things kinda started coming together. 

We moved to San Francisco some time later and there was no vanity in my tiny apartment, and the bathroom was floor to ceiling tile. So the vision board was stuck on a closet shelf and I forgot about it. I was packing to move a few years later and found it. As the memory of the girl who made that board flooded my psyche I marveled. So many of the things I put on it had come to fruition. And things which had not yet been achieved were much closer than before. Once we got settled into our new home and I started getting sick I decided to revamp this imagery meant to project my future, my dreams. Health and wellness took much higher priority then they had before, for good reason. Things had changed. My values were different, ambitions were more rooted in reality. I had a better grasp on what to expect out of life and what I needed to do to meet those expectations.

When we moved to Arizona I hung it up behind the bathroom door, so every day as I was curling or ironing my hair I had a chance to soak it in. Right my intentions, stay on track. One day last month I was looking at it and decided I needed a new one. I had outgrown the one from years before. So I sat down in my living room one afternoon with every magazine in the house piled in front of me and hours of General Hospital to catch up on blaring on the television screen before me. I ripped out pages, cut out images, this time affixing them to cream colored cardstock. It took me hours to complete but as I stared at the finished product I fell in love. I had captured past, present and future me, everything I was meant to be. I propped this one up on my vanity and every time I look at it get a shiver up my spine. I can be in a horrible mood, in pain and certain life is complete shit. But when I look at that vision board I am looking at everything which can be, and it renews my sense of duty to myself. There are times it is very hard to find motivation and meaning while living with chronic pain and illness. What this compilation of magazine clippings does for me is remind me life is so much bigger than right now. And there is still a girl inside who believes in a better tomorrow, and oh my is she worth fighting for! In fact my favorite phrase on the board, written in ridiculously large block letters reads, "OH YES I CAN!"

Thanks for joining,

Tuesday, March 27, 2012

Friend Family

When I moved to San Francisco it was not because I had family there, a fantastic job opportunity or a carefree life which allowed me to relocate to the second most expensive city in the United States. It was because like Tony Bennett, I had left my heart there. My husband and I converged on that tiny city packed to the gills with people, places and things beyond our wildest imaginations. It was a city full of transplants, people from all over the world who came looking for something else, too. Our first few holidays were quiet, just the two of us. Working retail left little time to travel home during the busiest seasons and we danced around the thriving metropolis, filling our day with wherever the mood took us. After a year or so we made friends and those quiet holidays turned into boisterous celebrations with others who either could not or did not want to go home to spend it with their family of origin.

As I examined this trend further I realized after a few years these folks we had been hanging out with, lending a helping hand when needed or dragging along on our own adventuresome escapades had at some point ceased to be just friends. They had become our "friend family". Those you called on when sick or in need, told what to do when they were obviously screwing up their lives or spent weekends away exploring the magnificent nuggets of culture and beauty Northern California is known to have many of. They were the ones I called when I was sick and needed a bottle of NyQuil, fruit-punch Gatorade and saltine crackers. The people who after a long day at work programing computers came home to help my husband program his own presentation due for class the next day. And the ones you could have a knock-down drag-out fight with and call to apologize a few days later, friendship resuming where it left off, no grudge held too tight.

I see so much pain, heartache and division the diagnosis of Fibromyalgia brings to some patients and their families. Facebook posts, emails, comments on this blog, the hurt seems to come pouring from so many directions. From disbelief to abandonment there is no shortage of abuses chronically ill sick people in constant physical agony are forced to endure by those they need the most, when they need them the most. Reflecting on this I realized I have entered another phase of "friend family" building. Living with chronic pain and illness is a very different reality than living without. As much as the healthy people in our lives try or don't try to understand, we all know unless you suffer from it, true comprehension cannot be reached. Through this little computer here I have met people from all four corners of the earth who are struggling in their own way to figure out how to live life with this illness. Some of these people I have gotten to know very well and have become members of my expanding Fibro-friend family. People who understand my limitations because they too have the same constraints placed on their lives. So go build your own Fibro-friend family! Guard your heart against those who will only condemn and judge you and seek acceptance in the family of your choosing.

Thanks for joining,

Friday, March 23, 2012

Holy Javelina!

-OR- How The Mighty Have Fallen

Yesterday sucked! I totally overdid it and piled way too much on my plate and wound up exasperated and sad and feeling quite upset, like life is moving backward, not forward. I woke up excited to go back to work. Just a three hour meeting. Easy, right? Then go start my Spanish class, all with a false bravado that I could just fling myself back into my normal pre-stroke activity level without skipping a beat, picking up right where I left off a month ago. But that is not at all what happened. I started the day with my usual morning walk around the neighborhood with the puppies. As we were turning the corner off the busy street and into the residential area two massive porcupine-meet-warthog-meet-armadillo looking spiky hunched-over things the size of overgrown hogs come tearing around the corner at top speed right at us. Thirteen pound Yorkie yo-yo's out to the end of his retractable leash, pouncing and barking to protect his mom and sister. I struggle to reel him in, imagining his precious life snapped up in an instant by what I have since learned are called javelinas. But they flew past us and were around the corner and out of sight before I could barely react, thank God! I kept walking and about three houses down spot another one rootin' around in someones cactus filled front yard. Being such a city girl this whole encounter was entirely surreal. I immediately whipped out my pepper spray in mother-bear instinct, shot it downwind to make sure it still worked and took up residence right in the middle of the street. I figured one of these nasty creatures could not pop out of the brush and snatch up a puppy the further away I was from the bushes. I start hollarin' LU-LU-LU-LU-LU at the top of my lungs, head rolling around like Linda Blair to make sure nothing was sneaking up on us from behind. I continue this parade the entire rest of the walk, trigger finger at the ready, barely pausing to let the dogs do their business, heart beating out of my chest, feeling completely vulnerable and wishing I had paid more attention to Bear Grylls' lessons on surviving the wild. Which right now was the paved tract-home wild I was racing through! We made it home without further incident but the adrenaline rush and fear totally exhausted me.

It was great to be back at work and see so many friendly and familiar faces, yet I got so speedy on the steroids I could hardly hold my plate at lunch, dropping food all over the buffet as I was trying to serve myself I was shaking so bad. It was a totally embarrassing reminder of how far away from normal me I really am. So of course I had to space out on muscle relaxers to get speedy under control, which in conjunction with the steroids make me stupid and hardly able to form cohesive sentences. I just hope no one was that focused on me and am still counting on my established reputation to get me through yet one more health crisis without anyone realizing what a hot mess I really am. I left the meeting and raced to the dentist for a teeth cleaning and by the time I got home was in such horrible fog and fatigue the thought of having to get up and go to night class was the last thing I had energy for. I rested for an hour and made it to class, barely, not realizing my gas tank was below empty and shifting into neutral as I coasted to every red light, turning off my air conditioner in the sweltering 108 degrees. As I am sitting in a class way below my level, intimidated to even say Buenas tardes, como esta?, I got really sad.

I have been existing in my imaginary dreamland, blogging to other Fibromyalgia sufferers who completely understand my struggles and challenges. I have been surrounding myself in this cocoon of acceptance and positive thinking that has nothing to do with actually surviving life in the outside world. Yesterday was a harsh wake-up call. It made me so mad. I felt the acute pain and disappointment of all the compromises I am settling on, trying to guise them under the title of realistic. I felt the sorrow and loss and confusion that I usually force myself to Positive-Polly spin into a portrait of peaceful acceptance, surrendering to my higher power and absolute faith in the perfect unknown path right before me. But last night it all came crashing down around me. My stomach is bloated beyond belief, my face fat and round, showing me the reason they call 'em "chipmunk cheeks" firsthand. And still my mood morose and angry. I don't wanna be a stroke survivor at 34! I don't wanna have to come back from yet another debilitating health crisis! I don't want to have to take out loans to pay my medical bills and cover my income while I cannot work. I don't want to be on this ship anymore! I want to get of, but there is no land anywhere around and either I keep hangin' on, swell after swell tossing and throwing me all over the deck, or jump out and sink because there is nowhere else to swim.

Thanks for joining,

This blog was originally published on 9/3/2010. I have been waiting for her, that girl on Prednisone who became a manic psycho and took over my being. Well here she is.

Thursday, March 22, 2012

When The Healthy Get Sick

Last week my husband got sick. Now my husband is a tough guy who can barrel through just about anything. He is also impossibly healthy. In the fifteen years I have known him he has been sick three times and missed a total of one day of work. I do not begrudge him his health, but when he gets to sniffling and kvetching about how horrible he feels it is hard for me to find that necessary bit of compassion because when it comes to being sick he is, quite frankly, a total wimp.

He was lying in bed and started describing his symptoms. "I am stuffed up and my body aches and I have a headache and my throat hurts and my mouth is dry and I feel so awful!" he exclaimed. "I am nauseous and grouchy and short tempered and don't think I could possibly work this way. In fact, I can't go to work tomorrow!" Now that elicited an eyebrow raise of surprise from me. He must be really sick, I thought. "I have cotton stuffed in my brain and my eyeballs hurt. I have no energy and just feel awful," he stated as he flopped around trying to get comfortable. "I can't work like this. I am just too sick. I think I might start hallucinating. I have a terrible fever," he carried on. "Hummm," I replied, knowing I would appear far more sympathetic if I just kept my mouth shut. I dropped three aspirin into his hand and gave him a glass of water. He huffed and puffed and bitched and moaned as he swallowed his pills.

"How did you go to work when you were so sick?" he asked me. "I didn't have a choice," I replied. "I know but still! Oh I ache and have chills and my vision is blurred. My neck is so weak I can hardly hold my head up and my face hurts!" His cadence slowed as the wheels in his head started turning. "I am so tired and frustrated. This is awful! Is this what it is like to have Fibro?" he asked in genuine inquiry. "A mild version, yes," I answered. His eyes got wide as he realized I just told him the unbearable misery he found himself in was a mild version of what I suffered from every day for many years. "How did you do it?" he honestly wanted to know. "Not very gracefully," I replied. "Oh but if this is what you felt like you were very graceful. I would be a mess!" he declared. "I know you would, I sure was," I gave him a tender caress on the cheek, touched by his turn of compassion. He sat for a bit in silence, trying to comprehend this information. "So you were sick like this for years on end, this is really what it felt like?" The facts were starting to congeal in that cotton head of his. "On my good days, yes. But take into account feeling the way you do and doctors insisting nothing is wrong with you. And the psychological torment of years of this on end," I clarified, because that truth adds so much more awfulness to the extent of the experience. "Oh my God, I know what it feels like to have Fibro!" he exclaimed. Now I had been patient, and was glad if he had to go through it he could at least channel his misery into a greater understanding of my experience with chronic pain and illness. But that blatant claim, that he now knew what it was like to have Fibromyalgia based on a three day sickness, well it was just a bit more than I could keep my sarcastic tongue bitten between my teeth and take. But since he was sick, and I really do try to be empathetic to others in that situation, I was very careful to be sure and give him as delicate a slap as I possibly could.

Thanks for joining,

Tuesday, March 20, 2012

Show Me The Tears

This past weekend we watched the movie 50/50. It is a sad story built on a comedic foundation about a young man in his 20's who gets cancer. I won't ruin the film for those who wish to see it, for it was a good movie. But the whole thing was an overwhelmingly interesting experience for me, for quite a few different reasons. First off the fact I even watched a movie about something sad, well that is huge. I try to avoid things in life that make me feel, especially pain. I have felt so much already in my mere 35 years that quite some time ago I declared myself shallow and refused to ever watch a heart-wrencher again. Give me a shoot 'em up action flick any day. Interpretive historical movies, sure. Comedy of every variety works. Slapstick, sarcastic or dark, I am not picky there. I will even suffer through a Jennifer Aniston chick-flick if really pressed. But I hated every minute of the movie UP and refused to see Marley And Me on general principal, even if Jennifer Aniston was in it.

There were spots in this movie which were sad and I appropriately shed a few tears. But the marked difference was I moved on as the story did, not dwelling on the sad part which conjured that flood of tearful emotions. And I didn't reach for the Xanax bottle once! This represents both tremendous emotional and cranial growth. For a mere few months ago I would have pushed "stop" and ran from the room wailing at the first sign of a forming tear. Living in pain for years on end and a frazzled system of neuropathways caused by my strokes left me far from capable of dealing with emotions, reality or the general public. 

I think I am progressing, folks. I think I am learning how to function in a world full of complexities and surprises again. For what is life if it is not complex and surprising? I would cry at the drop of a hat, or be struck by the lightening bolt of paralyzing anxiety every time the lady at the post office yelled at me, which she seemed to do a lot. But this movie experience showed me how much I have progressed and quite frankly, healed. The big combination of determination and physical repair I have been intent on fostering to get back to being the me I was before all this pain and sickness tried to slip into the drivers seat of my life. It has taken me years. Lots and lots of failed attempts. But I think I have not only reclaimed my position in the drivers seat, I have locked that pesky little bastard who tried to take over my life in the trunk. Now I just have to learn how to drive again...

Thanks for joining,

Friday, March 16, 2012

Honey, You Need Another Wife

"Not to replace me, in addition to me!" I clarified. I think the first time I said this to my husband he laughed, rolled his eyes back in his head and said, "Yeah right, like I could handle two of you!" But I was serious. I had yet to be diagnosed with CFS/ME and Fibro but had already been through three severe bouts of Pancreatitis and was developing horrible symptoms of pain and fatigue that no doctor was diagnosing or fixing. I worried for our futures. His if my mystery illness was terminal, mine if I were to not get better, or yet, keep getting worse, as the trend seemed to be following. "She could have the children and work so I could stay home and recover and we could have a family!" I protested. It seemed like a win-win to me, addressing the major areas I felt inadequate as a wife; childbearing and bringing in an income. In retrospect I believe I had been watching way too much Big Love & Girls Next Door, because for some reason polygamy did not seem like such a bad idea given our situation. 

Perhaps I liked the thought so much because I was the one that needed the wife. I needed help managing our lives, was getting too sick to maintain it myself, and an extra pair of hands seemed like just the remedy. Maybe this was the lonely only child in me craving a girlfriend to hang out with, conceivably a fantasy-land of harem-ish sisterhood, some strange flight of imagination that never actually considered what it would be like to put another woman in my husband's bed. "We could get a Russian mail-order bride," I would tease him. But as my health continued to decline and I kept after him about this he finally started getting mad. I did not understand how badly I was hurting him with the fears of my own demise wrapped up in a little box of sarcastic jest. One day he finally snapped and laid down the law. "Do not say that ever again! It is not funny, not an option and you sound like a lunatic!" he declared. "I love you and only want to be with you and don't care about having biological children. We can always adopt when the time is right. But when you say that it freaks me out so shut-up already!" He did not want another woman, he only wanted me. He was either a saint or insane, I couldn't tell which.

So I shut up about it, but I still worried about him. I had a vision of myself on my death bed, having picked out his new wife and trained her in all the ways a wife of experience knows how to take care of her husband. What a control freak I was! But I loved him so much and feared for him facing the big, bad, cold, hard world alone. I wanted a buffer, someone to look after him, and the easiest link for me to jump to was to create another me. I also felt horribly guilty for ruining his life with my sickness. All our plans and hopes and dreams for the future were not just on the back burner, they had been taken off the stove and put into the refrigerator. I was grateful, so grateful for his steadfastness, but the guilt was insane. I have heard the horror stories and know how bad abandonment when you are already down can be. Whenever I would express gratitude or appreciation that he stuck around he would just look at me and say, "What are you talking about, you are my wife," like it had never been a question to anyone ever a person might bail on their sick spouse. I come from a family of multiple divorces, his parents remained married until my mother-in-law passed away. That is a fundamental difference in upbringing I took for granted. Also, his father had strokes when he was quite young and his mother was a CNA (Certified Nursing Assistant), so health problems did not fly at him and smack him in the face from left field the way they did me. They were just part of life. I have carried these guilty feeling with me for the last five years but it was through his devotion I found the strength to make the decision to fight my ass off to get my life back.

He has indeed been to hell and back with me and it finally took having two strokes for me to truly comprehend he would never leave me. It was never a question to anyone but my paranoid mind. How I got this lucky I will never know. We were two drunk college kids that fell in love at 22 and have clung to each other for dear life ever since. We have made a choice to put our marriage above all else, make it a priority, forced ourselves to grow together during times of personal change and made tremendous sacrifices for the sake of being together. We just celebrated our 9th wedding anniversary and I finally feel like I have this marriage thing down. We have a groove, a flow, a fit that works. Yeah, we are both a little insane, but that makes it all the more interesting. So let me say thank you, honey, for just being you in all your amazing awesomeness. And to all you supportive spouses out there, you have not only made our lives worthwhile, you have made them worth fighting for.

Thanks for joining,

This blog was originally published on 9/2/2010. What came to mind as I read this is all the parents who feel deficient, as though their illness is robbing their children of a childhood. It jumped out at me my husband was one of those children. So take heart friends, through your challenges you can raise exceptional people.

Tuesday, March 13, 2012

Hulking Gray Beast

A while back a friend asked me why I have never blogged on depression. I did not have an answer. So I took a few days to chew it over and I still did not know. Depression is certainly something I am very familiar with on a personal level. It has pretty much been the one constant in my life since, well, puberty. I have seen therapists and psychiatrists and taken anti-depressants a plenty. Now depression can be situational, short-term based on temporary circumstances. Most people experience it at some time in life or another, for we hardly live in a perfect world. But it can be chronic, too. Long-term and quite severe in folks who have a chemical imbalance or are exposed to repetitive trauma for an extended period. That is the kind I have suffered from.

I don't know if I was born with it, developed it at an early age or triggered it with my lifestyle choices. All I know is about six months after I got married I became so severely depressed I could not go to work because I could not stop crying! Why? Hell if I knew! All I knew was the world was flat and gray. I was not the same person each morning, my personality mimicking Forest Gump's box of chocolate, but not nearly so sweet. Simply put I had no obvious outward reason to be depressed but could barely lift my head from my pillow. God depression is depressing!

The reaction from others I perceived was to snap out of it. Get over it. Make a decision to be happy and just do it, dammit! But I could not. Much like Fibromyalgia, depression was not my choice. It was a real clinical problem I experienced because of internal misfiring or dysfunction in my brain. And the longer I was depressed the harder it became to get better. I spent years in therapy learning how to not indulge my inner child, but instead set boundaries and limits with her. Purging the garbage from my past, I set out to create a now which was of my choosing. I called it shedding the snakeskin of my youth. Then I got Fibromyalgia. Of course the first line of defense the medical community offered was an anti-depressant, citing nothing else wrong with me. I have battled off and on with the hulking gray beast ever since I can remember. It is a thief, a robber, a criminal. Something I must manage, be cognisant of, always. For it is just waiting to gobble me up in my weak and sorrowful moments. Lifestyle choices help, living authentically is even better. But ignoring it, hoping it will just go away, that is the worst thing I could have done. Does a diabetic treat their diabetes? A person with high cholesterol implement measures to reduce it? A pregnant woman take prenatal vitamins? Yeah, when something is going on with your body you address it.

Thanks for joining,

Friday, March 9, 2012

A Glimmer Of Strength

It’s not what happens to you, but how you respond that matters.  ~Epictetus

I got sick and nobody could tell me what was wrong with me. So I decided I didn't have the time, money or luxury of being sick. I pushed into a horrible crash. Breaking down, disabled, a complete and total mess. Oh it was bad. My mom came to stay with me for a few days so my husband could go to work. I was not mentally stable enough to be left alone. Feelings of wanting to die, cease to exist and not feel the pain or anguish overtake me, well I needed darn near full-time supervision. So mom came to the rescue. After a handful of days I was reasonably certain I was going to survive. I was not sure how, but the acute crisis was over.

Mom's next stop was to help her good friend who just had surgery. I knew this woman, had worked for her years before. Back then she was a young widow with two little sons, a kind and dear soul who did her very best in the face of terrible circumstances. In the decade since she married and had a daughter and most recently underwent surgery to remove her thyroid, for it had cancer. So when my mom gave her a call I took the phone to say hello. When I asked her how she was she said, with the most sincere and thoughtful tone possible, she was good. Really? Good? It was like someone spurred me with a cattle-prod and slapped me across the face at the same time. How was she good? She had a two year-old and cancer. And she was good? I got off the phone with her and marveled at her sincere and genuine response. I wondered how one could be in control while so blatantly out of control of their circumstances. It became instantly obvious to me she had chosen to be good. She was not given the position or privilege, yet despite her situation was not wallowing in self-pity or anger or frustration. She opened my eyes that day to something deep. Something which is the only way I survived the awfulness of so much pain and illness.

Once I realized everything had been stripped away from me, leaving me rotting like a carcass picked dry by ugly greasy vultures, I realized I still had one thing left. My choice of how to respond to the situation. You can take my money, security, health, stability, job, love, joy, ambitions and hopefulness, but you cannot take away my spirit! You cannot take away my choice of how I react. There have been times where finding that spirit was darn near impossible, but with faith and fortitude I have been able to find my way back to the path of progress and slowly rebuild my life brick-by-brick, inch-by-inch. My friend taught me something valuable, stretched me in a way I did not know I could be stretched. I am thankful for that wake-up snap so early in the chronology of this disease, for it instilled in me a foundation I have been able to establish which has been my saving grace many times over. The choice to be good.

Thanks for joining,

This blog was originally published on 8/31/10.

Thursday, March 8, 2012

Thanks For Reading

When I first published this blog I was a stranger to the court of anonymous public opinion. I thought I knew all the answers. I had experienced total devastation and worked my way back to a decent quality of life. I believed if I did it, you could too! I was also on high-dose Prednisone and had just survived a near death experience. Needless to say I was floating around on my own personal little cloud nine. As more people read this blog more people reacted to what I had to say. Good or bad or ugly, there was no shortage of people to please and piss off. I learned very quickly how thoroughly obnoxious, "I did it so you can too" is. But perhaps the biggest thing I learned was just because I did, that most certainly did NOT mean everyone else could too. For this illness is as individual to each patient as fingerprints are to a human.

But people asked what I did, how did I get Fibro managed, they wanted to know. So I started The Fibromyalgia Crusade as a way to share what I have learned, among other reasons. For there was a phenomenal education which came with understanding what happened to make me so sick. And an even bigger one with what I did to get my life back. I also was so saddened by the state of affairs for Fibromyalgia patients in general. I learned I was not alone in struggling to find a doctor to take me seriously, losing my social life, career, bank account and everything else that tanks when life gets sick. The quickest way I saw to affect change was to encourage patients to take their individual power back, power I know I was stripped of when I was horribly ill with an illness I was told had no treatment, no cure. And very little understanding by both medicine and society. I was not capable of doing much more than writing and inspiring. But the patients, there were sadly just so many of us, and we are how real change is begun, with numbers of people singing the same song. So we started selling awareness items for people who were so inclined, to spread awareness and education about Fibromyalgia Syndrome.

Then I came off Prednisone. Oh my, I was in so far over my head! Not only had Fibro come to engulf me, bigger and badder then ever, but the strokes left me with gaps of burned out synapses in my brain. I have been working hard to grow new neuropathways around them. It has been a challenge. And I forgot how to be the type B I was certain I had successfully convinced myself I was. Goodness gracious it was the only way I survived CFS/ME! It has been a very interesting road ever since. Up and down I go as if on a swing-set while I mentally and emotionally recalibrate to this next stage in my health journey. So here we sit today, bigger and louder than ever. A year and a half in I want to thank you, my readers. You challenge me, encourage me, give me inspiration to look up to. You keep me accountable and through your interaction and insight not only show me the unbreakable will of the human spirit, you make me a better me, too.

Thanks for joining,

Tuesday, March 6, 2012

Sweet Dreams

I am not sure when I realized I was not sleeping. I think I had to start dreaming again to fully understand dream state was a place I wasn’t visiting. But by then I had all sorts of problems and was completely coming undone. I could not sleep but was exhausted. Slept ten hours a night only to wake up more fatigued than when I went to bed. Simultaneously suffering from insomnia and a REM thirst I could not quench, I was in an awful state of purgatory. Tylenol PM became my best friend, but eventually that stopped working. I got a prescription for Ambien and a referral for a sleep study. I slept with Ambien, enough to not melt into a puddle of mush at my retail job. But not nearly enough to feel even close to good. Then the sleep study lady was wont to prescribe me any more of the sleep medication. I begged and pleaded, explaining I could not work if I could not get rest. My brain was not shutting off. Why wasn’t she understanding this? But at this point in my life even working my scaled back job with shortened hours was becoming next to impossible.

So I went and had myself a good old fashioned breakdown. Had to cancel the sleep study scheduled for the next night but did find something to knock me out, Neurontin. It was originally prescribed by my psychiatrist to calm my over-firing neurotic central nervous system. It helped with anxiety and sleep and eventually pain, too. But I did not dream again, really reach the deep stage of sleep where the body repairs itself and builds immunity and the brain filters it’s subconscious through strange mashed up images, for a while. It took lots of treatment and medications.

And then one night I dreamed. It shocked me, for how had I not realized I was missing them? Things started to fall into place. There may have been that undiagnosed sleep problem for years, long before I ever felt symptoms! My poor body had chugged along as best it could without the ability to repair itself or maintain a healthy immune system. Until it couldn’t anymore. I spent years sleeping, ten to twelve hours a night. I had a lot to make up for and although I felt like a zombie who was sleeping my life away, something worked. My pain let up and never returned to the degree I suffered before getting lots and lots of sleep and trying different medications and treatments. Now it's plain as Christmas on December 25th when I don’t sleep. I feel terrible. My mood, my pain, my desire to participate in life. It all tanks. Before I slept and woke up exhausted. Now, for the most part, I wake up mildly interested in tackling this thing called life.

Thanks for joining,

Monday, March 5, 2012

Thanks For The Fear

Courage, strength, honor. Words distinguishing a high instance of integrity and bravery. Words we adorn the best of our military with. Use in a sorrowful farewell to a life well lived. But these are not inherent qualities to man. One is not born courageous, can occasionally display strength in utero, and certainly has done nothing to exhibit honor in the first few hours of life. For these are all virtues which require living life and more often than not, overcoming significant obstacles.

Sick people are given a very quick crash course in overcoming obstacles. Pretty soon, no matter the age of the individual or prognosis of the illness, one must decide if they are going the strong, courageous and honorable route or…well…the other way. There are many times in my life I was afraid, fearful, unable to face my reality. Sometimes I would cry and crumble. Other times I would bite my fingernails to the quick and stand frozen stiff, knees knocking. But more often then not I decided to mentally override my fear and forced myself to face the source of such insane apprehension. And overcome it. For if it is to be, it is up to me, is it not?

Algebra. I am the worst person in the world at math. So my first semester of college, when I learned one must be algebra proficient to earn a bachelors degree, well I decided it was not for me. College and the degree. For there was no way in the world I would pass the required college algebra course. But a lady I babysat for had a degree in accounting and a big huge bucket of patience. She tutored me from x+8=9 all the way up to the passing C grade required to move on to the infinitely more interesting art classes which comprised my major. Couldn’t tell you much more than x=1 today, but somehow I got through and earn that degree I did! Guns. They scared the crap out of me. So I learned how to shoot them. Load, hold, aim and fire. Then I hung my college algebra book up as a target and found immense satisfaction. I am now reasonably certain I would not be the homeowner shot by their own gun in a home invasion. So it is with these little baby steps in life, forcing ourselves to face fear, figure out how to overcome it, grab the source of it and rip it’s throat out, that is how courage, honor and strength is born. But just for the record, in all honesty, I can't imagine ever challenging my overwhelming fear of sharks.

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Friday, March 2, 2012

Channeling My Inner Scarlett

I grew up with the movie Gone With The Wind darn near an institution in my house. The tale of a dark and troubled time quite necessary to our country's history, America's ugly fight for freedom from slavery. The movie is puff-pastry layered with the icing of one spit-fire of a heroin and her determination to not let life get her down. Fiddle-de-de! So when I found out Gone With The Wind was masterfully updated and available on blu-ray I was elated! I saw this as an awesome opportunity to experience Tera as she hadn't been seen before; bright, vivid, crisp and clear. My husband had never seen this movie so we sat down last weekend to watch the epic adventure unfold in all its glory. I was enraptured, romanced, taken back to another time. Not only by what was unfolding on the rich and descriptively detailed screen in front of me but also the memories the impact this film had on my youth, shaped the culture I was raised in. And my husband hated it.

"This is racist!" he proclaimed. "No shit!" I said. "What a spoiled brat, I don't get her motivation. Am I supposed to feel sorry for her or something?" he said. I smiled. This was the man that hated On The Road, not empathizing or identifying with the self-indulgent beatnik movement walking away from responsibility to simply live and experience the passions of being. My husband has worked very hard to keep our heads above water, stuffed his own dreams and desires deep down to forge ahead into pure survival, been a loyal and true husband to a very sick wife. I just laughed and told him he was missing the whole point of the movie. A woman who would not be beat down by the harshness of a world she was ill-prepared to face, who did what had to be done to keep herself and those she loved going. Although she compromised morals, ethics, integrity and honor many times over, she survived. No, actually, she thrived!

"I'm not going to think about this today. I will think about it tomorrow. After all, tomorrow is another day!" Scarlett O'Hara's famed mantra is well suited to this Fibromyalgia patient. I cannot count the times I have crumpled into a frustrated lump of exhaustion, finally giving in to the pain and fatigue shock waving through my body. Nothing which so desperately needed to be accomplished was. Laundry, bills, dishes, housework, all these things I used to do in my spare time after working 50 hours a week and enjoying an active social life. Things I can now hardly keep up with despite not working outside my home or having anything close to resembling a social life. But these things keep piling up, causing more anguish and sorrow simply by still needing my attention. Unfortunately there is always going to be more to get done than time, energy or motivation to do it with. Frequently expectations will come we simply cannot meet, self-imposed or otherwise. We can beat ourselves up with failure, disappointment and frustration or we can decide to look at those few things that do get done as amazing, with pride! If the bed gets made, enjoy the way it looks for that one day, for it may not happen again for a while. If the dishes get washed, go out of your way to meander through the kitchen and notice how clean and pretty it looks. It could be weeks until you see it that way again. If the laundry gets sorted, washed, dried, folded and put away all in the same day stick gold star on your forehead and scream from the rooftops, because you sure as hell deserve it! And don’t forget our sister Scarlett, what an inspiration she can be to us all. For she truly had her priorities right. After all, tomorrow is another day.

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This blog was originally published on 8/28/10.

Thursday, March 1, 2012

Can I Please Get Some Drugs

I am so overwhelmingly sick and tired of the bad people or things in life taking much higher precedent than the good. Medicinal marijuana, for example. It would seem focusing on providing a medication to help relieve symptoms in ill patients would be the objective. But it is not. Instead mounds of efforts are spent on preventing those without a prescription or valid medical need from obtaining it. Much more effort than is spent facilitating the patient's legal right to access the medication, which was the intention of the law in the first place. Now it is indeed important to regulate this system, but by no way the reason which caused the voters in sixteen states, plus D.C., to pass this controversial law. The voters passed it because enough of them believed in a patient's right to access medication which could help them tremendously. Not to broaden the government's efforts, or give them a new angle to crack down on the war on drugs. Rationally the patient's needs come first, the crack down on illegal activity second. But that is not the way it is.

Another trend near and dear to my reality is the preposterous treatment of patients on narcotic pain medications. Now they are no joke, addictive and hard on the body. There is a well documented prescription medication addiction in the USA. People young and old, from all socioeconomic levels and every race, religion and creed. Nobody is immune from addiction. But not every person who takes them is an addict. Because they have a valid medical need. Millions of patients take the medication to relieve pain so they can recover from surgery or injury. And as soon as they no longer need it, they stop. There are also chronic pain patients who need these types of medications to manage pain so they can live life. Work to support their family, raise their children, take care of their parents. I was one of them at one time and simply would not have survived without them. But once I got to the point I could, I stopped. Gladly.

But what I see now is blatant bullying. Pain clinics are known to rip new patients off narcotics cold turkey. Folks are required to sign a consent form stating they agree to a drug test at every appointment. Or if prescribed are required to drug test to evaluate the amount in the system, searching for abuse or potential sale of the medications if the drug test comes back clean. It's like a police state out there! Doctors are under heavy scrutiny from the government and reluctant to prescribe them in the first place, leaving a person who can barely function in excruciating agony. Patients are admitted into the hospital and prescribed inadequate amounts of pain medication because the prejudice regarding their daily use causes the prescribing doctor to withhold therapeutic doses. I was one of those too. So once again the needs of the patient come in far second to the need to regulate addiction. How on earth does any of this make sense? When did we allow our needs to become so low on the totem pole? Oh, I forgot, we are sick and in pain and lacking the resources to stand up and fight. I don't have an answer or pretty little bow to tie up this blog. I am pissed fighting criminals is SO much more important than the needs of patients. It is not fair, does not make any sense and quite frankly, is the biggest crime being committed in this ugly little triangle between the government, prescribers and patients. 

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