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Showing posts from December, 2010

A New Years Eve To Remember

Let me take you back to a time in my life when things were simple. I was young, healthy, unencumbered with true adult responsibilities and newly in love. It was the dawn of the new millennium and life was exciting and full of delicious promise and undiscovered purpose. It was New Years Eve 1999. The question looming on everyone's mind concerned computer algorithms and whether or not our world was going to come crashing in on us as Y2K flipped us into a new century. A century the computer programmers of the world apparently never thought would come. I had graduated from college that May and the month before started up a romance with a man I had been friends with for 2 years. A man I left behind when I moved from my college town back to Los Angeles after graduation. We quickly fell deeply and passionately in love over long nightly phone conversations and monthly weekend visits. Long distance will either make or break a relationship quite quickly, and this was one it anchored. Going …

Floating In A Sea Of Chaos

Yesterday I found out my low thyroid, which was thought to be a side-effect of the steroids, is something my doctor wants to treat me for. Never mind that the symptoms of low thyroid have been blaring at me; lethargy, sleeping A LOT, weight gain (not all my thyroid's fault, piggly wiggly!) and malaise. I thought I was just feeling the affects of coming off the Prednisone and the strokes had set my Fibromyalgia management back a bit. I am so used to living sick I did not even question my symptoms as anything other than my body's attempt to balance itself out. But I guess there is now one more medical diagnosis, or condition, to add to the mix. Awesome. And one more medication to add to the collection I already take. Wonderful. But this knowledge has created some sort of shift in my perception, my thinking, and today I find myself fightin' mad!

I am annoyed with the super-intense pep talk my mother gave me this morning. I am irritated with the fact that everything I look at i…

When Did I Get So Fat?

It is interesting how attractiveness of the female form varies with time, place and culture. In the 16th and 17th centuries, for example, "Rubenesque", or voluptuous women were considered desirable. It showed they had plenty and did not work hard for a living. Their full-figured plumpness reinforced their social standing, lazing around eating grapes all day, waited on hand and foot by servants. These days thin is IN! It means you have enough self-control to not indulge and place priority on your physical form, often obsessively exercising and dieting your way to perfection. Obesity is on the rise in America, but the pages of every fashion magazine and actresses that grace our TV screens tell a different story. We have come a long way from the "Twiggy" ideal of the '60's, but even those with some curves, the J Lo's and Beyonce's of our day, are tiny little women if put next to the rest of us!
Fibromyalgia has done a number on my figure. I have a horri…

Sugar, Alcohol And The Price We Pay

I don't know about you all but I sure indulged over the holiday weekend! I ate, drank and was merry for a rollicking 3 days straight. I ate cookies, cheesecake, chocolate and bread pudding. I drank brandy & eggnog, sangria, champagne and red wine (not all at once!). I ate pork shoulder, filet mignon, stuffed salmon and pretty much as much as I possibly could! I have not done yoga or walked the dogs in days. I had fun indulging and pretending there would be no consequences for my actions. Was it worth it? I don't know, the jury is still out. But I woke up this morning with a SPLITTING headache. Not a stroke headache, not to worry, but a bad one none the less. My body hurts, I am not sure what the word motivation means, or if I have ever even heard it before, and am in a post-holiday flare to rival all flares! I am tired, achy, whiny, lazy and...still in bed at 2:30 in the afternoon! I did manage to take Yorkie & Porkie out and feed them breakfast at least, but that is L…

A Presentless Christmas

Every year we say we are not going to do presents. Then it turns into a very limited budget for just a few close family. Then reality hits, you can't buy a decent present for less than $30 each, and the circle gets just a little bigger. Then before you know it commercial Christmas, like every other money-sucking year, has taken over and under the tree is overflowing with the cheer of goodwill and giving. The intention of gift giving is wonderful, and the joy is real. When you thoughtfully pick out a gift someone you love will love it feels good. But most of us will agree the intention has become excessive. Expectation rules the concept and there is too much importance placed on the gifts and not the joy of the holiday itself. Baby Jesus was a King, and the wise sages of the day brought presents to him to show respect and welcome him into the world. We celebrate this day because as Christians we are celebrating the birth of our Savior. As Americans it is tradition, like in most wes…

My Own Ideas Of Health And Wellness

Back in 2005 I was your average American consumer. I had been raised on modern medicine and had no reason to doubt it. When I got sick I went to the doctor, they assessed what was wrong and told me what to do; take pills, have surgery, get rest, what have you, and I got better. I never gave any of it much thought. Until I started getting strange symptoms in June of that year, that is, and a year later had yet to receive a diagnosis of anything. I had been to a slew of doctors, they had run every test under the sun and still no one could tell me what was causing severe fatigue, pain, stomach problems, cognitive and memory impairment and a slew of other maladies that were quickly overtaking my ability to live life. Once I became disabled and could no longer work the fire was lit under my fanny to figure this one out! I was only getting sicker and was relatively confident I was not going to die from this, but I could not live with it either. I was too sick. I could barely leave my house.…

People Are Actually Wearing Awareness Bands!

When I left the hospital in August, got the guts to go public with my blog and started promoting it on Facebook Fibro sites I was looking in one direction. I was looking to gain attention as a writer and hopefully score a book deal, magazine column, something along those lines. But the more people I met, the more stories I heard, the more heartbreak that was brought to my attention turned my focus from my original intention and I quickly converted into a Fibro Crusader! I did not know what to do, but felt a strong pull, a calling to focus my efforts on something that will make an impact on the actual day to day lives of my growing number of Fibro friends. The Fibromyalgia Crusade popped into my head and I had no idea what it was, but knew it was where I was to put my attention, direct my energy. It has slowly formed into a patient-united awareness campaign consisting of a support site on Facebook (The Fibromyalgia Fun House), a blog (Chronicles Of Fibromyalgia) and accumulating a numb…

I Am A Fibromyalgia Patient

I am a mother and I am a daughter. I am a father and I am a son. I was busy living my life, and one day I got sick. I went to the doctor and they ran test after test after test and could not figure out what was wrong with me.
I am a student and I am a teacher, I am a grandchild and I am a grandparent. Finally they gave me a diagnosis of exclusion, something called Fibromyalgia, because their diagnostics are not sophisticated enough yet to source the true cause of the problem. They told me it is not terminal, but there are limited ways to treat the burning fire inside my muscles that debilitate me.
I am a sister and I am a brother, I am an aunt and I am an uncle. I experience extreme sleep disturbances, constant and pervasive pain and cognitive impairment. It makes living life very difficult, for both me and those around me. The medications I have been given treat the symptoms, not the source, and have many side-effects.
I am a cousin and I am a friend. I am a niece and I am a nephew. My …

Who Holds Your Power?

"I feel awful. I have anxiety and am bored and stressed out and have so much to do I do not even know where to start. I am melancholy and complacent and restless and down. Depressed. Indifferent. I am so sick of so much emotion. So much up and down. One moment it is this...the next moment it is that. This person has a problem, then that one over there has a bigger one... I am sick of drama and feeling and anxiousness and the never ending up and down of it all. I would rather feel nothing than this constant flux."
I wrote that yesterday afternoon, when I was kinda coming undone. The NY Giants lost their game in the most ridiculous fashion I have ever seen and my husband was pouting and storming around, all in a tizzy. He finally calmed down enough to ask me how I was doing and my answer was to read the above statement to him. He agreed he felt the exact same way. I said fine, then let's do something about this because we have too much goodness in our lives and are wasting …

Christmas Is On It's Way

Christmas is one week from today. Actually, seeing as Christmas Eve is considered Christmas, it is 6 days from today. I have yet to put 1 ornament on my tree that has been up for over a week with just the lights on (it comes that way). I have yet to buy 1 gift for anyone and don't plan on it seeing as I have no money. I have not sent 1 card or even taken the family photo that is the card yet. Basically, it could be the middle of July and I would have done nothing different over the last few weeks except drag the tree from the garage into the apartment. I would not so much say I am lacking in Christmas spirit, I am just dealing with other issues in my life and am not giving it the proper frenzy it expects. I have worked retail the last 10 years and Christmas has always been a miserable holiday for me. Working at 5am, staying open until midnight, the sales pressure, the 6 days a week 10 hours a day on your feet nightmare that is retail Christmas. Oh I am so grateful to not have to w…

When The Patient Is The Caretaker

Yesterday my dear mother had surgery. She spent the night before with us which made Yorkie the happiest dog on the planet. He kept switching from her bed to ours every hour. Porkie did not know what to think of all this, for there was NO WAY she was gonna go sleep with that strange woman in the other room. We are up at 5:30, checked into the hospital at 7, surgery by 9 and I am in post-op talking to the surgeon by 10. Everything went well, thank God, and I am in to greet her back to consciousness in recovery, with us on our way home by noon. Sounds nice and efficient, eh? Except the poor dear was in no state to be rushed out of the hospital a mere hour from waking up from general anesthesia! She was in pain and struggling and raw and emotional. I felt so bad for her! And it brought up all the layers upon layers upon layers of feelings about my myriad of hospitalizations and illnesses and health problems I have struggled with. A fair amount of us Fibromyalgia patients have other condit…

I Need To Go To Reform School

Yesterday afternoon I gave myself a bonafide anxiety attack! Not a panic-attack think-I-am-having-a-heart-attack call-an-ambulance experience, but one of those where everything that needs to get done implodes on your brain, severe central nervous system overload = FREAK OUT! I had to get to the post office by 5 and at 4:30 I was still sitting here in my sweats from my AM walk/yoga, au natural and not prepared to go anywhere. I started getting the afternoon tremor/shakes that I still seem to be getting from Prednisone and sprung into frantic action. I slapped some foundation and blush on and tried to find something to wear. But nothing that I own fits. I am pulling things down from the closet and struggling into them only to rip them off at the sight of what I actually look like in them. I am not exaggerating, I have 1 ONE 1 (did I make that clear) pair of pants that fit right now. All those months of truffles and Danish butter cookies and Yogurtland while on Prednisone are now manifes…

I Am Not Ashamed Anymore

When my husband and I got married in 2001 I dragged that poor 25 year-old man/boy kicking and screaming into wedded bliss. One of my more effective tortures was to send out a holiday picture and "update" letter every year. At first he thought it was the lamest thing ever, but eventually he started having fun with it. One year we were at the bottom of Lombard Street (the twisty and turney one in San Francisco), another year we were on the beach, the three of us silhouetted by the tumultuous ocean and blazing sunset. Most years it is just a head shot with Yorkie and maybe the Christmas tree behind us, the years I look good, that is. The letters stopped in 2005 when I got sick. I had no idea how to send out a cheerful and upbeat update telling our friends and family that I had some strange mystery illness no one really took seriously. Instead of vacations and trips our exploits consisted of MRI's and CT's and FMLA and disability. I did not know what to say, felt I would…

When I Am IN Pain I Can BE A Real Pain

Today is one of those "off" days us Fibrates experience quite often, actually. Some days I wake up and feel great, others I wake up and right out the gate feel like crap. Well this was one of those days. I opened my eyes to the phone ringing, the stupid pharmacy calling to remind me to pick up my prescription. This is the same pharmacy that will "automatically" refill prescriptions even though I have to get them from mail order. Tryin' to get one over on me! Anyway, I feel that tightness in my neck and throbbing in my head that is so familiar. Once I get up I am hurting all over and already in a BAD mood. What is so different today from yesterday? Why do I feel good one day and awful the next? These are the issues we deal with when we have this strange illness called Fibromyalgia. So I walked the pups but did not do yoga, needed my caffeine too badly! Tried to get to work and got frustrated with my attempts to do anything and therefore accomplished nothing! The…

It's All In The Attitude

I spent my youth frowning. Its kinda funny sad when you think about it. I did not particularly enjoy being a child. I think most type A's don't...not enough control over your circumstances, ya know? I recall the start of 6th grade. I moved in with my dad and step-Mom the summer before because they had just bought a house in the 'burbs. I was used to life in Los Angeles, the only blonde WASP on the block. This was a nice Southern California suburban planned community with tract homes, trees planted in the median of the main streets and good public schools. I guess when my step-Mom let me loose to line up with my class that first day of school I had my face set in a determined little frown and my arms folded across my chest. Very closed off. What I recognize now as fearful. My teenage years were spent seeking to define myself in the extremes, extremely wild, to be exact. It was how I got attention and was able to "compete" with the smart or pretty or rich girls. I …

The Fibromyalgia Crusade Awareness Bands

It is here! They have arrived! Our first The Fibromyalgia Crusade awareness item, a tri-colored silicone wristband and keychain, delivered today! I am overjoyed, I am excited, and I am nervous... This is the moment I have been working towards for months. All these blogs, all the relationships formed at The Fibromyalgia Fun House, all this passion I have been pouring into building an unstoppable awareness campaign will be tested. Are people really behind me? Do they believe in the cause? Have I proven myself a worthy leader, promising to head this charge of awareness to a global level? My mind swirls with the possibilities, the reality that this is the moment I will be truly tested. Will anyone buy these bands? Will people sport them with pride, finally feeling like they have the backing to go out into the world and scream "I have Fibromyalgia, it is real, and a bunch of us patients have banded together and are not going to be dismissed or doubted any longer!"? Only time will…

Sick Of Sick

At the end of July I had 2 strokes. Old news to most, new news to a few. I was diagnosed with a treatable and reversible form of Vasculitis, put on Prednisone and sent home to recover. Now I will utilize modern medicine for many things but prefer to go as natural as possible as much as I can. Pancreatitis, give me the drugs. Vasculitis, bring 'em on! VICD, you bet ‘cha I will crush that virus with anti-virals. But day to day living and management of Fibromyalgia depends on lifestyle for me. I rely on a  moderate dose of Neurontin and habit modification; reducing stress, taking my vitamins, exercising, cutting out processed foods from my diet, etc. I always believed that steroids were BAD and to be avoided at all cost. In retrospect it is kinda funny (in that sick and ironic funny way), when I was in the ER and the doctor told me he was going to do a Spinal Tap, which would require a minimal amount steroids, I balked at him. NO STEROIDS I said. He smirked in a sad way that said I d…

Dear People...

I suffer from a chronic illness. It is exhausting and painful and sometimes I will complain and cry. Some days I cannot get out of bed. Some days I feel great and run around like a crazy trying to get caught up on my life. On most I try to balance between the two extremes, for that is where my best success lies. I still have responsibilities and obligations and it often seems that they will take me down. But they don't, at least not for very long. I strive to be a good spouse, partner, parent, employee, sibling, child, friend and anything else that may apply to my life. But I have to set limits. The limits are with myself, for the longer I live with this illness the more I learn about what I can and cannot do to still maintain some semblance of a quality of life. The limits often come across as harsh and selfish, like I am only considering myself. In a way I am, but it is self-preservation, not self-indulgence that motivates me. I cannot engage in the myriad of activities I once d…

Today Wore Me Out!

Today is one of those days where the second it begins you start running and it quickly spins out of your control. Prepping for the carpet cleaning was a fair amount of work, not awful, but I am convinced they did not use a solution, just hot water. Cheapskate apartments. I had plans to go over to my friends house today while it was drying, anticipating a day of girlie TV watching and toe-nail painting. That wonderful 9-2 window came due at 9:45 and I had just enough done to gather my stuff together from room to room as they guided their mile long hoses up the stairs and through the apartment. I neglected to grab a sweater and upon loading Yorkie, Porkie, the computers, my makeup, my coffee and my raisin bran and yogurt for crying outloud, realized I HATE the jeans I am wearing. I am not quite Lyrica weight, but certainly more than when I left the hospital after the strokes, before Prednisone. Every pair I own that fit have holes in them. But I don't dare walk across my wet carpet …

My Artificial Christmas Tree

I have strong opinions and a checkered past with Christmas trees. I grew up with traditional trees my entire life. The family would pile in the car Griswold style and head to the lot. We would walk around examining each specimen lying there or propped up by 2x4 plywood cross nailed to the bottom. The tree had to be inspected from each angle, making sure there was only 1 "bad spot" that could face the wall. My family liked the bushy kind. I liked the Charlie Brown style with fewer branches so you could place the ornaments into the tree and create depth. I never won. We would strap the prized recipient to the roof of the car and drive home slowly, hoping the twine would not snap and the tree would not fly off the car, causing mayhem on the road. Once home my dad would spray it down with a power hose and shake all the loose needles out. Once it was dry it was finally time to bring it into the house to decorate. Of course it was my job to make sure it was watered every few days …

My Mother-In-Law

Man 'o man was she a force to be reckoned with! I firmly believe if she had not liked me I would not be married to her son. She ruled that family with an iron fist softened by love and a genuine desire to see her children happy. She recognized in me a strong woman, one that would keep her baby (even thought he was the oldest and only boy) in line and on the right path. My husband was very close to his mother, but I never realized how close until I got caller ID. I started checking my log (back when it was its own machine, not part of the phone) and would find she was calling our house 10x a day, leaving only maybe 2 messages. She would come to visit and load us up at the grocery store. We would not have survived our first year together of extreme poverty if not for the supermarket gift certificates and boxes of clearance clothes from The Gap she would send us. She was a pistol! Loved her bingo and played the lotto regularly, her spirit was feisty and strong and as stubborn as the …

The Best Revenge Is A Life Well Lived

Yin Yang is an ancient Chinese philosophy "used to describe how polar or seemingly contrary forces are interconnected and interdependent in the natural world, and how they give rise to each other in turn. Opposites thus only exist in relation to each other."* Yin represents dark, passive, downward, cold, contracting and weak. Yang stands for bright, active, upward, hot, expanding and strong. As you can see too much of one is not a good thing, it is the BALANCE we strive for. For it is in assuming components of each we seek out to maintain order in our world. When one is sick as can be; downward, cold, contracting and weak, it is the infusion of the opposite that will return health. But if the upward, hot, expanding and strong take over, balance has not been restored and health will not prevail, manic will! As we struggle to find a way to restore equilibrium and wellness to our lives we doubtlessly encounter many difficulties along the way. None are more emotionally devast…

Bring On The Haters

In 2007, on my husband's birthday, he picked me up at home on his lunch break from work so we could go out to eat and I could have the car for the rest of the afternoon. We were innocently driving along a residential area we drove through multiple times a day. He stopped at a four-way stop, proceeded to go and then BAM! Some moron ran his stop-sign and plowed right into us in the middle of the intersection. In California the insurance companies declare fault and even though we called the police they did nothing but instruct us to move our car from the middle of the road. Long story short the other driver lied and said we ran our stop-sign. The insurance companies were pathetic in investigating, I was too sick to do anything about this and my husband was working too much to invest effort in proving his innocence. My blood would boil, my symptoms would flare, my anger would rage every time I thought of this. But I had no energy to spare. It was all I could do to make it to work and …

Keeping Up Appearances

When something personal and devastating happens to a person or family we have two choices as to how to handle it. Stuff it deep inside and work your tail off to hide it from the world or let everyone know and hope the best for their compassion and understanding. I found in the beginning of my illness I was very open, but it was actually approval I was looking for. Doctors could not figure out what was wrong with me so I pined for the rest of the world to tell me it was okay, I was really sick, it was not in my head, this was indeed happening. That approval did not come. Most of my friends were "party" friends and quickly faded into the backdrop of my life as I ceased to be able to enjoy the activities we used to engage in together. A few true gems stood out and I still count on their friendship to this day. Our families were a mixed bag. Although they are much more understanding and compassionate now (at least to my face) that was a battle that was hard fought and won with m…