Posts

Showing posts from January, 2011

Don't Quit Until The Job Is Done

I was raised with a good-old fashioned work ethic. You do your best, consider a job completed ONLY when the outcome is satisfactory and don't stop or give in when it gets tough. So that is how I lived my life. Powering through whatever obstacles were in my way and not stopping until I could present a job well done. I pushed my way up a career ladder I did not want, but did it anyway, because that's what was expected of me. I worked 12 hours a day running up and down the state of California, making sure enough lipstick and eyeshadow had been sold in order to keep my bosses happy. It was stressful and consumed my life. But I did it because that is what I was taught to do, achieve what is expected of me. Life is tough and only the tough make anything of themselves, so get goin' girl!
That attitude is the single most detrimental contributor to my CFS/Fibromyalgia story. Oh how I wish I had acknowledged that lifestyle was dynamite lit on both ends, how overwhelmingly unbalanced …

The Guilt Game

Right around 2005, when I first became ill with what has now progressed to Fibromyalgia, I started playing a game. It was not a good game, nor could I find anyone that wanted to play it with me. It was a game that caused the people I forced to engage, myself included, feeling desperate and awful. Yet I continued to seek it out, almost as a default, and relished in the havoc it wreaked and sorrow it created. It is called The Guilt Game. I felt so darn guilty for being sick and the impact my limitations had on my family and friends. I figured if I beat them to the miserable punch it would somehow lessen the burden my illness had on their lives. Boy was I ever wrong! It only served to spread this depraved misery round and round until the room was so thick with the fog of my guilt even I had to get away.
When my husband and I decided it was time for me to quit regular employment and take a freelance position we graduated to The Guilt Game II. I decided ALL the components that make a househ…

A Unified Front

There are so many variables with Fibromyalgia. Some people have this symptom, some have that symptom. Some have found ways to heal while others have not (surely not for lack of trying!). Some are so severe they can barely walk and live on narcotics while others lift weights at the gym daily and work 2 jobs. I am coming to realize the pure range of this illness is one of the main reasons we are so misunderstood! Not only can modern medicine not just poke your blood out of your vein with a needle or scan your brain with some radiation blaster to tell you what is wrong with you, but we all experience Fibromyalgia with different symptoms and varying severity and it has compounded a mass confusion. We the patients cannot even understand or agree on what it is!

Last year I had to get a root canal. I was extremely paranoid about the hurt involved, never having had one before and knowing how overly sensitive I am to any sensation of pain. The endodontist was amazing and numbed me u…

Forget The To Do List, It's All About The Done List!

I am a miserable victim of "To Do" lists. I write down EVERYTHING that needs to be done and then freak out at the sheer gravity of it all, knowing hours of endless work lie ahead of me. With no idea of how to get the energy harnessed I frenzy myself into crazy mode, forcing myself to get a grip and take that figurative "relax" pill. When something approaches a deadline I do get it done and am able to function through life this way, just not very cheerfully or peacefully. Well yesterday I had enough. Thoughts, obligations, ideas, necessary transactions, appointments and responsibilities were swirling around my head and I yelled STOP! Stop with the endless amount of obsessing and dissatisfaction I put on myself. Let it go...
Clothes are always going to need washing, toilets are always going to need cleaning, dinner is always going to need cooking and calling the insurance guy about the mix-up in billing is something that should be taken care of immediately. So in the …

Bring Me The Meds

For the past two days I have taken Xanax all day long to simply not freak myself out into a hysterical hot mess. I am either sobbing, screaming and throwing things or drugged up in some half-existence, one where nothing much bothers me, nor inspires me. I am kind of just here. I simply cannot take all the crying and pure anger and aggression flowing out of me that changing medications induces. This happened to me a couple of years ago, before I discovered sedatives, and that was one seriously messed up and suicidal time in my life. I LITERALLY thought I was coming unglued and did not give proper weight to the affect coming off Cymbalta and Lyrica would have on me. I saw a therapist, which  was helpful, but low and behold a few months after all those meds got out of my system and the new ones stabilized I was my normal happy-go-lucky smart-ass self again! Who ever woulda thunk it!  
Us Fibromyalgia patients struggle, oh how we struggle, to find a way to manage this beast of an illness t…

Stop The World, I Want To Get Off

Well I sobbed on my walk with Yorkie and Porkie today. This is becoming quite a trend! The feelings of frustration and anger and just being sucked and sucked and sucked dry is overwhelming me! That joke of a stay-cation with my husband really got the ball rolling and I am starting to fall apart! I have today and hopefully tomorrow without the excruciating Black Bleeding Amethyst pain stepping down on Prednisone gifts me with. I have not done yoga in 2 weeks now and was up until 3am just getting the house put back together. Not clean, no laundry or bills or anything really accomplished, just took it out of after-the-bomb-shelter mode so I could actually find things. Everything in my life is unfinished or needs to be done, or started, for that matter. 
What I really need is a retreat all to myself. Where I can wake up each day and know that day is mine. Not Fibro's, not my husband's, not The Crusades, not my home's, not the telemarketer's trying to sell me vinyl siding. J…

A Stay-cation Is Not A Vacation

10 days with my husband at home. 10 days. For you long-married women out there I don't even need to say anything more. For the rest of you, well, it was SO good to have time to relax and spend together but was quite hard on me personally, and hard on the organization of our life, which I manage. I woke up this morning to a VERY messy house, un-organized everything, seriously unpaid bills and major panic over how to put it all back together again. I feel overwhelmingly disconnected from this blog and our Fun House. This has really made me truly grasp how important The Crusade, and all the components that make it what it is, are to me. It is anchored deep, my life force, in my blood, my beating heart. In the midst of stay-cation madness I had to place another order for Awareness Bands and that, in and of itself, makes me jump up and down with glee (and then go take a Tramadol)! We really are marching forward, moving ahead as we talk and talk and pass out postcards and show off our a…

Get Well With Brielle

So after that doctor appointment where I was told I needed to "figure out how to get myself better" I decided I had nothing to lose and searched my health benefits for acupuncture coverage. I had a successful experience with it following a car accident when I was 16 years-old that cured me of migraines the crash had left me with. There were no insurance benefits, per say, but a few acupuncturists had a reduced-rate they offered us policy-holders. I called 1 that was in close proximity to my house and set up an appointment. I shuffled in to said appointment a few days later in my usual pathetic fashion of that time; sweats, slippers, hair in a bun with no makeup on, late as usual, glad I had easily found a parking space right across the street. I was warmly greeted by a Caucasian female close to my age with a kind face and amazing aura of positive energy about her. Her office was serene and relaxing, full of tastefully displayed Asian decor and soft, flowing mus…

I Hate Tear-Jerkers

Last night my husband and I settled down, after a long day of pain and complaining on my end, to watch something on our streaming Blu-ray player. We were choosing between Arrested Development and Disney Pixar's Up. I figured I was up for a lighthearted childrens movie over an irony-dripping adult comedy and agreed to the cartoon. Well within 15 minutes I knew we had made the wrong choice. I won't ruin it for those that have not seen it but it hit entirely too close to home. Let's just say at the end of last July I survived a medical crisis that nearly killed me. My husband and I are both still a little raw about the whole thing and need no reminder of how painful it was, or how close to the edge I really came. As the story unfolded before us I stared at my TV screen in abject emotional horror at what was happening in front of me. I looked over and my husband was stone-faced. We did not say one word to each other the entire movie and when it ended the silence between us was…

The Land Of Pretty

Once upon a time I was deliciously high-maintenance. I spent lots of money to keep up the appearance of an attractive woman. The $200 highlights, pedicure and acrylic nail fill every 2 weeks, monthly eyebrow and Brazilian waxing, tanning salon trips topped with self-tan cream galore. Its a good thing I worked in prestige cosmetics and was given more than I could possibly use or I would have squandered the farm on face creams and makeup as well! I spent plenty of time in the salon. The beauty parlor is a phenomena in and of itself. It is not only a place to leave looking better than when you came in, but is a place to unwind, relax, and know that you are doing something decadent and purely for yourself. It is a symbol of bonding female sensibilities. It is (or was before life could be conducted on a cell phone) a place to let your tensions melt away as your manipulated fingers were filed and nails formed or hot wax slathered onto your skin and hair painfully ripped from your body. Its …

Grumpy Grumpy Grouch Grouch

I pushed "publish" on my cheerful and upbeat blog yesterday, bragging about how I can just ignore Fibro and have a fun week of "stay-cation" with my husband, and promptly burst into tears. I was in so much pain. I was a bloody dark Amethyst in mood. I was so angry that I can't do simple things like blog at the coffee shop for hours on end sitting on their bloody uncomfortable chairs and suffer no consequences. I knew it was coming, for I could not conduct a conversation with my friend on the phone I was in such a fog, but I wanted so badly to deny it! I felt guilt, of course, for infringing on our fun time and ruining his vacation since I already feel I have ruined his life. I was a radiating ball of negativity and sorrow. Came home, took some meds, got comfy on the sofa and relaxed all that tension a bit. But I knew today was gonna be a "flare pay-day" and even the thought of that pissed me off!
Of course when I woke up this morning I was foggy and al…

Its So Easy To Be A Bitch

My husband and I lead very different lives. He is up at 4am every morning, dragging himself off to go put in long and grueling white-collar hours at his downtown finance firm. I...well you all know me... I am lucky to be up before 10am these days and half the time I don't even leave the house since I work from home. My mornings consist of a Yorkie & Porkie walk, yoga, breakfast and the time-suck aka the computer. Before I know it 3pm is fast approaching and honey dear is almost on his way home. Of course I have accomplished only a fraction of what needs to be done, but I quickly throw myself together in high gear, attempting to give my husband the illusion of a productive wife who can get her fanny to the post office before 5pm! Sure I keep pressing myself for more organization, more accomplishments, sticking to a schedule or routine that has me primped and prettied up every day just to sit around the house looking fabulous for no reason, like some soap opera star. I have yet …

An Investment In The Family

We moved to Arizona from San Francisco in the spring of '08. I took a part-time sales job with the same cosmetics company I had been with for the previous 3 years, just with a different retailer. It was sure an adjustment acclimating to the Arizona clientele! After dealing with the barrage of tourists, mix of ethnicities and big city mentality for 6 years the slow and mellow pace of a retired desert resort town was a very pleasant change, if a bit under-stimulating. But the retail devil soon reared its ugly head and after almost a year of completely obnoxious schedule manipulations I started to get "sick" again. I felt Chronic Fatigue Syndrome sneaking up on me as my ability to manage my life was taken away. My manager interpreted 3 days a week as 6 days in a row and then there was a round of lay-offs, resulting in me being the person they scheduled to work more when needed. I panicked. I absolutely COULD NOT go through what I had already gone through to get better from …

The Road To Change

Man 'o man are we messed up. I am a Richter scale of hormonal emotions over here and my husband is about at his breaking point. Every single action is a negative or bad thing, and I am constantly forcing myself to keep my mouth SHUT so I don't wreak mayhem on my marriage. Getting off of Prednisone is akin to having severe PMS for weeks on end; maddening! When life gets like this, every action wrong, every thought negative, no enjoyment derived from anything, it is time for a reevaluation. What is important in life has escaped us as the toil and drudgery of my constant illnesses and my husbands severe unhappiness with his job consume our reality. It took a new friend reading old posts and leaving endearing comments on them to reminded me of my state of mind last spring, when life was on the UP. Before I had 2 strokes and nearly died. Before I met any of you. Mostly a year later we are still working our asses off, still on that same hamster wheel to nowhere, or so it seams, it f…

I Need To Sleep

My dear friends, your fearless leader is falling apart over here! I am sleeping 12 hours a night and could sleep more. This morning when my husband called because he had not heard from me by 11am he woke me up from a deep dream state. One where I was trying to protect some mouse/dog looking thing that talked and was going to become the Queen of England. I am sure a dream interpreter would have a field day with that one! Stepping down to an almost non-existent dose of Prednisone, this flu/sick thing I have been fending off and my need for post-stroke recovery sleep is hitting me all at once and I am simply exhausted! Not Chronic Fatigue Syndrome exhausted, for that was a monster 10x worse than this, but it is extremely difficult for me to accomplish anything in a day and I feel my life is crumbling down around me! I have not cooked all week and have wrecked our finances with cheap take-out meals every night. My dear husband has had to find somewhere to buy his lunch while at work, and …

Just To Reiterate...

When I first went "live" with this blog in August I was just plain scared. I had spent the previous 5 months pouring my heart and soul onto the pages of this computer screen, unpublished and unadvertised, and after my strokes determined I was ready to take the (gulp!) leap to publicity. My Fibromyalgia journey was too important to keep to myself, for I know many who exist in misery for their entire lives and I had somehow navigated myself to a managed state and was actually getting my life back! What I had written was deep, personal, a mix of the past and present impact Fibromyalgia had on my life. So I took the jump, promoted this blog and was shocked and amazed at the response it garnered. People wanted to read it! And they kept coming back for more! Pretty soon my Facebook page became a "support group" of sorts where people would come to gain strength, vent and complain yet ultimately find a laugh or two to cheer them up on their way out the door, back to living…

Yoga Or Narcotics

I was talking to my father on the phone last week, having just finished my morning walk with the pups and about to settle down to watch General Hospital while doing my daily yoga routine. I mused to him that regular yoga practice was the difference between taking narcotics or not for my Fibromyalgia pain. He was more than a little shocked and surprised, for to him narcotics are a BIG DEAL. For most that have never lived with chronic pain, narcotics are a big deal. For those that have or do live with it, well, we do what we need to in order to survive. He was happy to hear I have a way to manage my pain without the addictive misery of pain pills, but the thought that yoga could have that much of an impact on my pain was a new phenomena for him. Then the new year came and it got really cold and I slacked off, eating lots of good (not for you) food and drinking alcohol and not walking the pups or even thinking about doing yoga all weekend. Each day my pain would increase just ever so muc…

I Am Taking My Life Back

Today finds me on the other side of my post-holiday, post-sick flare and I am amazed at how much has gotten away from me! I have been indulging Fibromyalgia, buying my own excuses that keep me unproductive and lazy. Making mental agreements with myself that justify this behavior. Whining and complaining in my head that I hurt so therefore I could not possibly be expected to keep up a routine.  Bargaining with myself to excuse my lackadaisical drive and refusal to exercise discipline in doing all the things that are required to make my life successful. Today it all came swirling down around me and I have jumped on top of it and am screaming ENOUGH! Enough with the excuses, the mental crutch I have allowed my physical well being to become. Enough handing over my life, my dreams, my goals and aspirations. Yeah I may still hurt and feel like crap a fair amount of the time but I don't care...I am taking my life back!
I am inherently rebellious and a night owl. These two factors are crea…

Being Normal Sick

I think getting sick is a FABULOUS way to usher in the new year. Mandatory, in fact! There is nothing to a Fibrate like a good old fashioned bout with the flu, or bronchitis, pneumonia, strep, even just a simple old fashioned cold will do the trick. See, adding another layer of illness to our already complex array of maladies is just another way to stir the pot of misery, mix it up a little, give us a bit of variety. We tend to get so bored with the constant and pervasive body pain, fatigue, migraines, fog-brain, insomnia and other issues Fibromyalgia so generously and faithfully hands us on a daily basis. What's so bad about a little fever thrown in, some chills and aches, coughing up a lung or two, some vomiting or diarrhea? I mean really, folks, can you expect Fibro symptoms only to keep you occupied? It really is necessary to get "normal sick" to remember how much worse it could all be, right? Especially when we are embarking on a new year, a fresh start, a new resol…

New Years Resolutions

Are we a bit disgruntled, my fellow-Fibro warriors? Was this last year as hard or harder than we expected? Are we looking at this marvelous start date of 1/1/11 to cleanse us of our frustrations and roadblocks and throw a whole new dose of determination on top of our problems? I know there is a big part of me that wants to. But I have learned enough through the years that I can be my own worst enemy when I set my expectation too high, thinking I can control certain parameters that are unrealistic. For a fair amount of what I need to go away is my illness and the limitations it imposes on my life! But it is not just something I can will away, or decide is better and ignore. I have tried that and only made myself sicker! Fibromyalgia, unfortunately, is stronger than determination. But if we seek improvement, not perfection from ourselves, we will not be let down. For it is easy to make a few small choices throughout the course of the day that add up to some pretty monumental change for …