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Showing posts from October, 2010

I Am Sick Of Apologizing

I am sick of apologizing for being me. I am sick of apologizing for being sick and not as productive or efficient or clear-headed as I once was. I am sick of apologizing for the passion that consumes me to get The Fibromyalgia Crusade out of my brain and actually doing something to better our lives. I am sick of apologizing for not going to bed early enough or keeping my house clean enough or taking the time to make myself pretty every day. I am sick of apologizing for not being available at the drop of a hat whenever someone else has a day off and wants to play. I am sick of apologizing if what it takes for me to manage my illness infringes on what you want to do for the moment/hour/day. I am sick of apologizing for having to rest and take it easy after a lot of activity. I am sick of apologizing if my day gets behind me and I need to write and post my blog after the sun has gone down. I am sick of apologizing for not being able to do what others want me to do when they want me to do…

The Yorkie vs. The Porkie

The Yorkie has lived a charmed life. He was a heavily-researched, paranoid first-time-buyer picked-from the-litter puppy that cost a pretty penny and was brought from his mother to his new home at 10 weeks. My husband and I read every What To Expect When You're Expecting type of dog training and pack leading and puppy socializing book for months. We were your typical type-A DINK (double-income-no-kids) couple that were determined to have our perfect little pure-bread accompany us on every outing and excursion. He knew how to "sit" by the first week and vigorously attended training classes, oh we did everything right! On Sundays we took him to what I called "Yuppie Puppy Play Group", where we paid $12 so he could romp around an indoor dog-camp with other puppies that were not old enough to receive their full vaccinations and go to the park. Oh and a dominant little thing he was! Humping everything in sight, so full of pack-leading-testosterone that within 5 minu…

Leah, Is That You?

Today marked another decrease in the dreaded Prednisone that has been ruling my life since the strokes at the end of July, and I am feeling this one right out of the gate! This morning started out normal as usual, but about an hour in I noticed my productivity was actually that, productive! I was not bouncing around and flipping between internet screens and pushing papers from one side of my desk to the other. I was actually getting something done! I locked on to the task at hand and was quickly doing something that has not happened in a long time. Instead of re-arranging my To Do list I was actually crossing things off it! I kept powering it out...feeling so productive and efficient and pleased that things I have been gearing up to do for weeks now were suddenly getting done with focus and determination. Then I realized afternoon came and the tremor shakes did not, causing no need for a guilty 1/4 Xanax to calm myself down. Feeling pretty good I kept going, hard at work on getting Th…

Starting My Business

Yesterday I woke up bright and early, well it was actually still dark out and not by choice, so I decided to attack a huge source of irritation in my life...the closet in my office. I gutted it and slowly organized it back to containment, even lugging heavy boxes up from the garage and totally wearing myself out (and many of you too, sorry!). I took quite a few trips down memory lane. I perused the hippie-love-child photo journey of my parent's wedding album my mother turned over to me years ago. I was shocked with how much I look like she did. I don't see it as much now but my mom at 24 looks just like me at 34...ha ha ha I wish. Found a letter my first boyfriend wrote me from jail professing his undying love, all sorts of funny tidbits from my childhood, Cabbage Patch Doll adoption certificates, birthday cards from deceased grandparents and even a $2 bill from the year I was born! I found an article from my home town newspaper I was interviewed in my junior year of high scho…

What We Are Fighting For

I received a message yesterday that I cannot get out of my mind. There was something about it that bothered me, intuitively I knew what it was, but I like to give everyone the benefit of the doubt and gave the inquirer ample opportunity to respond. Yet there has been no response. So as I gutted the bane of my existence this morning, the closet in my office where everything that does not have a home gets SHOVED and SMUSHED and PILED into, this was whirling round and round my head and I got a bit steamed up and have decided to address this publicly. I believe this attitude personifies so much of what we are fighting against. It represents what I have intentionally worked so hard to NOT make The Fibromyalgia Fun House and The Chronicles Of Fibromyalgia and ultimately The Fibromyalgia Crusade about. Instead of paraphrasing I am gonna give you the verbatim (I have left the typo's intact):

Inquirer: "Let me ask you a question...and I want an honest answer, if you please.... If I ca…

The To Do List

I am a To Do list queen, and a queen procrastinator as well, so you can imagine how well those two go together. Then add Fibromyalgia and Prednisone on top of that and what you wind up with is a frantic quivering mess that gets nothing done but everything started! Then the internal rebel kicks in and I get mad at the To Do list for being too confining, trying to control me, and I ignore it. But after a while everything starts piling up around me and I start feeling out of control, so I start compiling that To Do list again, glad to have somewhere to put all the loose ends flying around in my brain so I can stop obsessing on every household chore or trip to the store that needs to happen. Before I got sick my husband would get so annoyed with my To Do lists. They were a mile long and he has told me on more than one occasion that I create a list for 1 day that would take any normal person a week to complete, and then I freak out when it does not get done. This behavior has hardly improv…

Prednisone Vacancy

Okay so as most of you know I suffered from 2 strokes at the end of July caused by yet another "syndrome" (no known cause) that is treatable with steroids and calcium-channel blockers. At least they know how to treat this one! I was started on high doses of Prednisone in the ICU and I have spent the last nearly 3 months manic and crazy out of my mind while the drug keeps the vessels in my brain open and calm, not squeezing open and shut like a kinked garden hose. But that is about the only thing that is calm about me! Oh it has been a very tough drug to deal with. First off my Fibromyalgia pain all but disappeared! That was awesome...to say the least...and I have truly enjoyed every pain-free moment. I have adopted a yoga routine I practice daily like religion after my morning walk with the pups in hopes that my muscles will be stretched and flexible when the stiffness and pain return. The first week home I worked myself into such a frenzy that my mom and husband put me on 2…

The Fibromyalgia Fun House Is In Full Swing

11 days ago The Fibromyalgia Fun House birthed herself from my Facebook page and took off running on her own two feet. Since then it has been a wild ride of momentum-building and friend-making! I have to admit we are a pretty wacky bunch! We have navigated privacy issues (bring me the Abacus!) while attracting more and more newbies to the cause. We have laughed ourselves silly as Karen & Teresa (our resident Thelma & Louise) cast characters for their Alice In Wonderland play and Wizard Of Oz production. We have shared symptoms and remedies and side-effect concerns and more than a few times cheered each other up out of some pretty deep darkness. I know I have felt lighter and freer knowing I have a place to call my Fibromyalgia home. I even got the guts to post a Prednisone-volleyball-face picture. I am vain and insecure and you all should know what a stretch that was for me! And I don't know if everyone is still on their best behavior 'cause we are still in the honeymo…

Working Retail With Fibromyalgia

I graduated from college with a B.A. in Art, Interior Design. I was good at it and liked it well enough but how I chose it was a bit funny. I had already moved "away" for my second year and attended the community college in the town I wanted to go to University in. I applied for transfer as a junior the following year and had to declare a major. So I grabbed that university catalog and flipped through with a pen and paper ready to jot down every major that 1. Did not include complicated math or science 2. I could work after graduation without having to go to graduate school 3. Seemed interesting and like something I could do. Oh such the overachiever! So it came down to Recreation Management, Interior Design and something else I cannot remember. Interior Design won and that's what I did. I had an "internship" the summer before I graduated back home in Los Angeles and secured a job there upon completion. It was a small outfit, 1 woman with a store-front that did…

I Always Get Caught

I was one of those precocious and intelligent children that was under-challenged, my creativity not channeled in the right direction. Combine that with a fair amount of instability growing up and once puberty hit, rebellion smacked me hard! I became difficult at age 13. I started hanging out with the wrong crowd, smoking, drinking, doing all those things parents fear. I was not the pretty popular girl, the cheerleader type, so I strove to define myself in the extremes. I craved attention, always pushing my way to center stage and that was the way this Leo child obtained it! I got into "heavy metal" music (it was the late '80's after all) and wore a dog collar choke-chain around my neck, setting myself up to become the wild party girl I morphed into as my teenage years progressed. But I was always getting caught! I got caught with pot in junior high and my parents flipped out (Oh I would have beat me silly). They handled it much better than I would have had I been the…

The 5 Pointed Star Of Health

I am on an eternal quest to get to bed on time. In the last month or so I have been popping out of bed between 7:30 and 8 o' clock in the morning so if I don't get my sleep on the back-end I just don't get it! I need 9 solid hours to feel good. I have been through every stage of sleep deprivation and insomnia us Fibrates go through and have fought long and hard to get to the point where my sleep disturbances are minimized and my sleep quality solid. As a night-owl my entire life who could sleep HAPPILY until 10am or later every morning, this is a huge adjustment. What winds up happening is I spend all day feeling like crap and all headachy and manicky and sore throaty and eating bad to satiate those "comfort" feelings my brain's tiredness is calling out for. But I just can't seem to get my act together! I am a busy bee and leave all my chores until my hypocritical-self is shooing my husband off to bed so he does not become sleep deprived. Oh, and I spend …

Poor Amethyst!

I am so impressed with the swift and passionate acceptance of the "Purple Pain Code"! I have seen it popping up everywhere and think we really needed a way to quickly, easily and succinctly identify how we are feeling, in both mind and body. My husband even overheard someone at work saying she was Mulberry today! Okay, fine, maybe he gave her the link to my blog knowing she has Fibromyalgia so that is a bit of a cheat but still! But I am worried I have hurt Amethyst's feelings...and reputation! I have seen more than a few comment that Amethyst is their birthstone and they don't like the negative connotation or they are going to stop wearing some Amethyst piece of jewelry or another and I feel horrible! I think Amethysts are beautiful gemstones and should still be celebrated and embraced, all the more so because their purple richness corresponds with our Fibromyalgia ribbon color. Look at it as yet another way to show our support and spread awareness. Breast cancer su…

I Am So Sorry I Have Fibromyalgia

I frequently find myself either bitterly acting out or saying this to those around me. Apologizing to those whose lives are affected by my illness, as though it is something I did or like or want or don't suffer horribly from myself. As hard as Fibromyalgia is to manage, the guilt on top of everything else is ridiculous! Do other chronic illness sufferers feel the same way or is this particular to our condition because science and medicine are still so clueless about it? Because there is a massive "blame the patient" stigma attached to Fibromyalgia? I honestly don't know. All I know is that when it comes time to take care of myself because I am in a flare or have not slept or am hurting so bad I simply cannot get up off the sofa I feel guilty. Guilt tinged with absurd anger, and usually jump up to try to perform whatever task is in question. Many 'o many a time I have picked a fight with my husband simply by projecting this onto him. I take my own disappointment …

Knocked Off My Balance

How many of us can say we take good wholesome care of ourselves? We listen to and respect our bodies, get the rest we need, minimize stress, stay positive and laugh often? Who can say we generally eat a healthy diet, exercise daily, take pride in our appearance and live in the moment? We commit to what we feel comfortable doing and say "No" to the rest without guilt, invest in a few quality relationships and take a moment out here and there to stop and smell the roses? Lemmie guess, NONE OF US??? I sure as hell don't! These are traits that seem frivolous and selfish but are actually extremely essential if you want to live a long life of good quality. Now throw Fibromyalgia into the mix and I have just made a very bad joke... Add that insomnia, constant and pervasive pain and a brain swimming in fog with normal obligations like kids, significant others, friends, family, home and work responsibilities and damn it, I have just overwhelmed myself! But it is even more esse…

Welcome To The Fibromyalgia Fun House

Two days ago Leah Tyler's Fibro-Fun House Facebook page moved out. She was taking on a life of her own and needed her own space. There are benefits to a "page" or "group" that my readers and Fun House friends were inquiring about. I still don't know the difference (or what I signed up for), remember, give me the abacus! But mainly it boiled down to more privacy. The conversations and comments are more self-contained than those on a "friends" page. Most don't want to wear their Fibromyalgia battered heart on their sleeve for all their friends and family to see and needed a more private forum to get a deeper level of support. So the Fibro-Fun House became "The Fibromyalgia Fun House" and has been on a momentum building rampage since Tuesday night! Once again it has been met with an overwhelmingly positive response. I am having a blast meeting all sorts of new folks and thrilled to see my existing friends coming over as well. The newbie…

The Clinic That Knew More Than I Did

Let's go back to fall of 2006. I had just experienced a complete emotional breakdown from pushing myself for the past year well beyond any human breaking point. I tried to live and work like a normal person while infected with Chronic Fatigue Syndrome and my mind and body had finally given out, letting Fibromyalgia take over. I was sitting at home, disabled, unable to use my right hand or arm, in writhing, aching, constant pain, sleepless, anxiety shooting to the stars, not able to remember anything that I was doing from one minute to the next, wishing I could just die, incapable of leaving my house for more that 20 minutes at a time due to exhaustive fatigue, frantic with stress about my future...hell, I am surprised I could even remember how to breathe, that's what a mess I was! You all know what I am talking about, most of you have been there (or are there, bless your hearts!). Thankfully California was one of a few states that offered State Disability Insurance. I secured …

You Are What You Eat

The topic of diet has been coming up a lot lately, and the connection between what we eat affecting how we feel. As you all have gathered by now I embrace a holistic approach to wellness. Holistic as defined by Merriam-Webster Dictionary is "relating to or concerned with wholes or with complete systems rather than with the analysis of, treatment of, or dissection into parts". I view my body as a complete entity, with each symptom, pain or issue connected to the others. There is no question in my mind that processed, preservative filled, altered, fake and high fat and calorie foods make me feel bad. My symptoms will flare after a few meals out and let's not even talk about fast-food...road trips are much less fun when the restaurant tour includes salads instead of french fries! It has taken me many years and much trial and error but I have found an eating theory that works for me: If God made it, I will eat it. If man altered it, I try to limit it. Or at least indulge for…

Strong In A Storm Of Criticism

One thing that is very important to me is the attitude of this blog remain positive. It is critical for us to support each other with grace and dignity, show respect even if we don't necessarily agree, not compete for who has it harder or suffers more, belittle those that are more fortunate in life or illness and judge those that do it differently or come from a place we don't understand. We face enough adversity in life. The last place we need hindrance is in a place of supposed support and acceptance. I am amazed we have grown as much as we have and our positivity and integrity have remained intact! I am so impressed with the quality of people my blog and The Fibro Fun House (nothing more exciting than my Facebook page) have attracted. I feel such a deep kinship with so many of you. But apparently something I wrote a few days back struck a strong enough nerve to warrant some critical feedback. Wow was that hard for me to take! My initial reaction was, "Screw you, don…

Find Your Way Back To Health

As the readership of this blog grows and the Fibro-Fun House (my Facebook page) expands I am getting another round of fellow Fibrates asking me, "How did you get better?". For some reason lots of you have been turned on to my strange brand of what I call Keepin' It Real Optimism, and for this I am so grateful! I am glad to share my journey and learn from you. I am thrilled to see you networking with each other and forming friendships and support amongst yourselves as well. There are so many of us with bloody and bruised heads from banging them up against the wall of living with Fibromyalgia, and I think more than a few have found a place to come where they can stop beating themselves up and relish in the fact that there are SO many others in the same situation. If I had a nickle for every time I have seen "I don't feel so alone now" I would be a wealthy woman! By the nature of this illness and how it fits into the world of modern medicine we have …

Remove Yourself From The Illness

A condition like Fibromyalgia is all consuming. People that don't have it just don't understand. When every inch of your body is screaming in pain and you can't even sleep to escape it, yet walk around in a fatigue-induced fog trying to function, it is damn near impossible to distinguish where you end and Fibromyalgia begins. One of my hardest emotional hurdles in managing Fibromyalgia/CFS was separating myself from the illness. In the beginning I would chant over and over to myself, "I have Fibromyalgia, Fibromyalgia is not me!" I had to draw a line between us, for it was quite possibly on its way to overtaking me, the very essence of me, it is that strong. When I would wake up in the morning after working retail the day before I would dread those short steps to the bathroom because I simply felt like I was going to break I hurt so bad. It was very difficult to think about anything else but the pulsing, coursing pain. When I would lie on the sofa watching the du…

The Color Purple

As most of us are well acquainted, the color of our support ribbon is purple. Purple is a traditional color of royalty, the color of the Crown Chakra which is linked to the crown of the head, the nervous system, and the brain (okay can someone please say Fibromyalgia!), and is representative of pure thought. The Purple Heart represents courage in the military and pride in Christianity, just to name a few of its associations. Oh purple has assumed an enlightened and vast embodiment throughout history. The study of purple in psychology has been shown to uplift, calm the mind and nerves (here we go with the Fibromyalgia again), offer a sense of spirituality and encourage creativity. "Purple embodies the balance of red's stimulation and blue's calm... With a sense of mystic and royal qualities, purple is a color often well liked by very creative or eccentric types."* We are in very good company with the color purple!

Today a Facebook Fibro-sister mused she wished we had …

Full Speed Ahead

I am not liking today. I have a headache and blurred vision, very Fibro-fogged, and am quickly spiraling into a very bad mood. This usually means a flare-up is on its way to my house! Woo Hoo! My poor immune system is really fighting Prednisone, but some days it seems like it is not winning. Our best friends are getting married in Florida next month and I cannot possibly see a way to go. We simply do not have the money. Where am I pulling $1000 out of to fly, eat and sleep? My ass? My husband is back on his "work every Saturday" kick again but is totally falling apart so I don't see how that is possible, either. He is already exhausted and barely hanging on. What is more concerning is he is determined to push himself to the brink. Exactly what I did when I first got sick. Back in 2004 & 2005 I knew my life was too much for me but I ignored every warning sign and barreled full-speed ahead, winding up crashing and burning in an exhausted heap of sickness. Here I sit 6 …

Breast Cancer Awareness America

As we all know October brings about a massive awareness and support to breast cancer. Pink ribbons start popping up everywhere, TV ads and talk shows feature it, shops and stores sell products benefiting it, hell even the NFL goes pink! This past Sunday as I sat watching the Giants beat the Bears (thank you boys for winning!) I noted each pink glove and pink ribbon plastered all over that playing field and stadium. It is awesome that such support, true nationwide support, is shown for an awful disease that's had to fight its way to recognition and awareness. Breast cancer patients were treated horribly before 1998, when The Federal Breast Reconstruction Law aka The Women's Health Act * was passed. Insurance companies would pay only for complete mastectomy's, leaving a flat scar in the place of a breast with the healthy breast still intact! I recently received a notice in the mail from my insurance company summarizing their benefits regarding breast cancer and the right to …

Changing That Point Of View

It is one thing to live in constant writhing pain day in and day out, having no clue what you are doing half the time and unable to sleep and escape it all, yet experiencing unrelenting fatigue. But let's be honest here, Fibromyalgia is not as bad as it gets. Yes it is awful, but it is not terminal, will not turn you into a quadriplegic, does not require you to be bathed and bathroomed by a caretaker, hooked up to machines for your every breath... Oh yes there are certainly worse physical ailments out there. But what I see as the BIGGEST challenge with Fibromyalgia is the mental and emotional aspect of this illness. Figuratively close your eyes and follow me for a second. One day or week or illness or trauma you wake up and hurt all over in a way you have never hurt before, and that pain does not go away. You go to the doctor and they run their standard battery of tests. You return for your follow-up and although you still feel awful, a bit worse in fact, your tests all came back …