Friday, December 31, 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 against all common sense, he quit his job, gave away his earthly belongings and flew to town, moving in with me the day before Thanksgiving. He quickly found a job and we settled into domestication in our 350 square foot studio apartment. His Catholic family was none to thrilled that we were "living in sin" and his mother sent him her engagement ring and started hounding him about marriage...

Deciding to brave the chance of Y2K's worst case scenario, we ventured into Hollywood with a couple of friends to The House Of Blues to see "The Reverend" Al Green. I have never in my life had an easier time making my way down the Sunset strip. It was empty, desolate. Only a few brave souls dared to leave the comfort of their homes and chance getting stuck in a potential disaster of epic proportions. It seems so silly now but was a really big deal then! The show was amazing and about a quarter to midnight we found ourselves on the patio, smoking our cigarettes, more than a little buzzed. I was trying to convince my boyfriend we should go to Las Vegas on Tuesday, a day we both had off, to get married. I was silly like that. He said we could not get married, he did not have any money. I then said the words that have stuck by me every day since... "Honey, I don't need money, we can make money, I need you! I love you!". He then suddenly got serious and looked deeply into my eyes, saying "I don't want to leave 1999 with you just being my girlfriend. Will you do me the honor of becoming my wife?" As I sat straddling him, face to face, Al Green belting out Love & Happiness, seconds until the dawn of the new millennium, I started shaking my head back and forth and said "Nothing would make me happier!" Well I guess I gave the poor guy a heart attack from the pause between the head shaking and my words of acceptance! He thought the answer was no!

We celebrate the 12th anniversary of this spontaneous proposal tonight. Over the years New Years Eve has turned into more of an anniversary celebration than a new years party for us. I always found it quite overrated, personally, and can't imagine a new years that could ever top that one. But I love this memory. The poor guy did not have the opportunity to plan some special engagement scenario, he did not even have the ring with him! It is a marvelous example of the type of people we are, how we have lived our lives. Impulsive, passionate, never half-way doing anything, giving whatever is in front of us our all. Grabbing what we want in life and making it happen. It is sheer luck, intuition, instinct, God, something, all of it, that I married a man of such integrity and character. I was a 23 year-old girl playing house, with no true idea of how hard life was going to get. He has stuck by my side through thick and thin. He has sacrificed many years and opportunities in his own personal life to do this, and has never wavered in his commitment to me. Yes he is a handful (could you imagine me with a husband that wasn't?), quite intense and emotional, often to the point of maddening. Yet he is my rock, my anchor, my strength. I am who I am today because I have had him to lean on during times of stress and devastation. He has held me up when I could not do it for myself. He has laid me down when I was too crazy to allow myself to rest, but most of all he has loved me for me for all these years. I think that puts him up for sainthood! 

Thanks for joining,

P.S. I am trying to improve the visibility of this blog. If you are a fan and on Facebook please click on "Blog" from The Fibromyalgia Fun House page and "Follow" Chronicles Of Fibromyalgia on Networked Blogs. It will improve our search engine rankings and get the word out faster! Thanks friends!

Thursday, December 30, 2010

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 is something that needs to be done. I am SO disappointed with myself for not blogging yesterday. Sleeping until 11 leaves one with not much of a day and NOTHING got done, not even my first and mandatory priority, writing my blog. My house is dirty, I am dirty, the dogs are dirty. Its a good thing my husband takes care of his own hygiene or he would be dirty too! I feel generally out of control, overwhelmed, scattered and directionless. At least life on Prendisone was full of drive and determination! It may have been crack-head fueled drive and determination, but at least I accomplished my objectives. I went to bed at night with a clean house and exercised every day. I jumped out of bed at 7:30 every morning and got stuff done. I actually wonder if The Fibromyalgia Crusade would have been birthed and brought to life if not for the intense need to accomplish Prednisone fueled me with.

But that is all in the past, and what I have to deal with is what is now. My greatest hurdle is self-discipline and time management. I must set structure and routine to my day if I wish to accomplish even a small portion of what lies ahead of me. I have set lofty goals and ambitions for this crusade. I know the momentum has started, rolling down the hill of progress, and the amount of support I am receiving from other Fibrates that are gaining encouragement and strength from our community is TREMENDOUS! So many people believe in this cause, and the success of the approach we are taking to spread awareness and improve the quality of our lives. I still marvel in amazement that my little blog has stirred up all this excitement! So I am going to take a deep breath. I will forgive myself for being human and stop looking through negative colored glasses and put my rose-tinted ones back on! I will respect my body and the limitations my illnesses place upon my productivity. But I will organize. I will persevere. I will march on to move The Fibromyalgia Crusade to the next level with the strength of all of you behind me, in front of me, surrounding me...

Thanks for joining,

P.S. I am trying to improve the visibility of this blog. If you are a fan and on Facebook please click on "Blog" from The Fibromyalgia Fun House page and "Follow" Chronicles Of Fibromyalgia on Networked Blogs. It will improve our search engine rankings and get the word out faster! Thanks friends!

Tuesday, December 28, 2010

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 horrible history of yo-yo dieting that started in my early 20's and Fibro has only compounded the problem. I was always a "voluptuous" girl with generous bosoms and curvy hips. I maintained a good figure but was never what one would call "skinny". No, not ever. I moved in with my husband right out of college and started packing on the pounds. We both lost a bunch of weight on Weight Watchers before our wedding but slowly gained it back over the years. After the near-death Pancreatitis attack in 2004 I lost upwards of 40 lbs. and was working out with a vengeance. I avoided anything fried, cheese, creamy, processed, sugary, buttery or manufactured like the plague. I was terrified of another attack and very motivated to maintain my strict diet and exercise regiment. I got down to a size 6-8 and was looking the best I ever had in my life. Then "mystery illness" hit hard and I could not weight train anymore, could not ride my bike. I could barely move off the couch! A little weight crept back on, and pretty soon my clothes were too tight. I was not nearly as strict with my diet, seeking "comfort food" to cushion the misery of illness, and gained about 20 lbs. Not great but not the end of the world either. Then I was introduced to a friend named Lyrica and I watched my body balloon up like someone hooked me up to a hose and turned the water on! I gained about 30 more lbs. and started packing it on in places I never had before. My hips grew into monstrous flanks on either side of my body! None of my clothes fit and I reluctantly bought 1 pair of black pants for work and 1 pair of jeans. I finally went off Lyrica and low and behold, same diet and exercise, but about 20 lbs melted away! 

Then the strokes hit and I was put on Prednisone, the nemesis that saved my life. After running around like a crack-head and stuffing my face with anything and everything I possibly could for the last 5 months I now find myself almost at that darn Lyrica weight again! Literally nothing in my closet fits! I am down enough on the drug now to have control back, but I am frustrated and irritated and upset and don't want to keep having to do this! The up, down, up, down is very bad for you. See not only do you lose fat when you diet, but muscle mass as well. Then when you gain the weight back, as many eventually do after going off the diet, you gain the fat back but not the muscle. So I find myself, once again, at a cross-road. Having vowed to never go on another diet again I need to do something. Something I can live with for the rest of my life. I already walk for 30 minutes 5 days a week, and do yoga too. But I have yet to resume the gym as part of my health and fitness solution and know my portions are entirely too big for weight loss as well. Now I am finding my Fibromyalgia not nearly as well managed as it was before the strokes and I am back to sleeping 10 hours a night and resting a large portion of my day. So where do I find the time? Where do I find the motivation? The handful of times I have weight trained since my Fibro was under control have shown me it only helps the pain. So I guess I buck up and put my big girl panties on and do what needs to be done! I tighten up my portions, get back on the unprocessed and unrefined eating plan I love so well, and get my butt to the gym! This is my problem, my responsibility to do something about, and I will keep pressing ahead until I am satisfied with the reflection looking back at me in the mirror!

Thanks for joining,

P.S. I am trying to improve the visibility of this blog. If you are a fan and on Facebook please click on "Blog" from The Fibromyalgia Fun House page and "Follow" Chronicles Of Fibromyalgia on Networked Blogs. It will improve our search engine rankings and get the word out faster! Thanks friends! 

Monday, December 27, 2010

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 LITERALLY all I have done today. And I feel not one bit guilty for indulging my self-induced symptoms, for I need to recoup in order to regroup and don't regret enjoying my holiday.

It is insane this tight little balance beam I must walk in order to keep my Fibromyalgia symptoms in check. One slight misstep, one itty-bitty sway, and I am knocked off and have to climb a proverbial mountain to get back on again. I allowed myself to go WAY off the reservation this last weekend and sit here in a post-gorged daze, wondering how to get back on track, how long it will take. This is life with Fibromyalgia. Constantly having to weigh action vs. consequence. The foot-loose and fancy free girl from my youth is now a calculatingly careful decision maker, knowing that for every action there is a reaction. Most of the time I chose wisely. But the times I do not I pay dearly without fail.

I have spent years beating myself up for this pattern. So irritated with myself when I feel bad. So mad I made the choices I made. But that kinda defeats the purpose of the enjoyment of the indulgence and I have learned to release my expectations of perfection. I can now accept that 3 days of excess leads to at least 1 day in bed. I no longer beat myself up or get mad at myself. I may feel terrible and have a journey ahead of me to get my balance back, and sure won't be doing this again anytime soon, but man 'o man did I have fun! Practicing the art of acceptance and forgiveness of oneself is a lifelong journey. So as I resign myself to a day in bed, snuggled up with my snoozing pups, I am grateful for the fun I had over the holiday and anticipate resuming my normal activities that keep my Fibromyalgia managed tomorrow. I just wish  that darn cheesecake would stop calling my name from the kitchen...

Thanks for joining,

P.S. I am trying to improve the visibility of this blog. If you are a fan and on Facebook please click on "Blog" from The Fibromyalgia Fun House page and "Follow" Chronicles Of Fibromyalgia on Networked Blogs. It will improve our search engine rankings and get the word out faster! Thanks friends!

Friday, December 24, 2010

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 western countries. No matter where your religion lies, Christmas is acknowledged by a lot of people.

But this morning, Christmas Eve, I woke early (thanks to a loud and whining dog who has now gone back to sleep) and there is not 1 single present under our tree. We have really stuck with the agreement to not exchange gifts and it is the most amazing and liberating feeling! The tree is just as beautiful as it is every year, maybe more so because there is no trussed-up and dazzling packages tumbling out from under it to distract. I have had NO stress of who needs what, mall frenzy shopping, spending money I just don't have on gifts people really don't need, wrapping and tagging and shipping by postal imposed deadlines. I have been busy trying to live everyday life and have not had to push and sacrifice for a holiday that has forgotten its true spirit. We are going to PetSmart today, and will wrap up some puppy toys because Yorkie unwraps gifts (yes I will be recording it) and it is too fun to torture the dogs with rawhide stocking stuffers inches from their nose yet completely unaccessable. And I will find a little something for my mom because she is my mom and we are going to her house for dinner tonight, but my husband and I have made a different choice, and have actually stuck to it this year!

Will it be strange to wake up tomorrow morning and NOT open presents from my husband? Yes, I am sure it will. But we have plans for a low-key and relaxing holiday with lots of good food, egg nog and brandy and some badly needed rest & relaxation. And we have New Years plans that we are both greatly anticipating. Remember back in September, a little over a month after my strokes, when I could not afford to take him to our favorite restaurant for his birthday dinner? Well we made reservations then for New Years Eve (which will be our 11th engagement anniversary) at that same restaurant with the hope and prayer that our financial situation would improve enough by years end to be able to afford the highfalutin meal. So we will see, we have 48 hours to cancel. Money is not pouring in from anywhere but the bills are paid, the house is warm and our bellies are full. What more could someone who was all but certain brain surgery or death were in my eminent future 5 short months ago want? Merry Christmas friends. Blessings to all!

Thanks for joining,

P.S. I am trying to improve the visibility of this blog. If you are a fan and on Facebook please click on "Blog" from The Fibromyalgia Fun House page and "Follow" Chronicles Of Fibromyalgia. It will improve our search engine rankings and get the word out faster! Thanks friends!

Thursday, December 23, 2010

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. I would have to rest after taking a shower for a half hour before I could put lotion on and emptying the dishwasher was my afternoon event, for crying out loud! It was awful.

The first book that introduced me to what I am now very familiar with as "holistic medicine" was From Fatigued To Fantanstic. It was written by a doctor who came down with Chronic Fatigue Syndrome and Fibromyalgia and was able to test and treat himself to wellness. It opened my eyes to the bill of goods we are being sold by modern medicine and big Pharma, how they do not take into account the entire picture. They dissect the body and treat individual symptoms, not respecting it as parts of a whole that work together synergistically. That book led me to The Fibromyalgia And Fatigue Center, who was able to accurately diagnose the root of my problems, what turned out to be extremely high viral infections, one in my central nervous system, a suppressed immune system, a sleep problem and a genetic pre-disposition to this whole thing. And it is there my love affair with supplements was born. I diligently boosted up my immune system naturally and was actually able to return to work after 7 months on disability. It was very expensive and through the years and much trial and error I have found ways to obtain what I need to remain "managed" at a somewhat affordable price. Vitamin D3 And Solar Power was another book that I read that opened my eyes to some truths we have decided to ignore in our modern society. Basically we are hurting ourselves much more by avoiding the sun, for cancer rates are skyrocketing as Vitamin D deficiencies become the norm. The one book that truly blew my mind was Ageless by Suzanne Somers. Holy Shazam folks are we ever missing the boat! Our technology has advanced so much faster that our biology that we are actually killing ourselves with our modern lifestyle that is completely contrary to what the human animal needs to remain healthy and viable.

So I now sit with tons of self-taught "knowledge" and lots of crazy ideas about health and wellness. Ideas that are contrary to what your average doctor or health practitioner will tell you. I do not take anything a doctor says at face value, for the "practice" of medicine has a long way to go. I believe the "5 small meals a day" concept is a hoax to compensate for the processed and refined diet we consume off the grocery store shelves. I believe going in the sun is good for you if kept in moderation (my dermatologist does not agree). I feel if God made it, I will eat, use, manipulate or consume it, but the more it has been altered by man the worse it is for you. I believe antibiotics and the birth control pill are MUCH more powerful than we give them credit for, the chemicals we rub all over our bodies in the form of lotions and sunscreens are absorbed by our largest organ, the skin, and can be quite harmful over a lifetime. I will never go on another "diet", for I eventually go off it and doubtlessly gain the weight back, having lost muscle mass and increased fat in the process. Life for me is about reducing chemicals in my environment and diet, reducing my consumption of sugar, processed and refined foods, lots of rest, exercise, laughter, low-stress and balancing the necessity for modern pharmaceuticals with the protection of natural supplements. It is about researching and learning and adapting a lifestyle that makes sense to me. So no longer do I take what my doctor tells me at face value. I want to know and research what I am doing to myself at their suggestion. And sometimes I come across as a raving lunatic, but know that for someone with Chronic Fatigue Syndrome and Fibromaylgia, along with my other health problems, I am doing pretty darn good!

Thanks for joining,

The other two books are linked on the right...

Wednesday, December 22, 2010

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 number of Fibromyalgia patients. We are finding our sanity in connecting with others and recognizing these strange symptoms we go through are in fact normal for a Fibro patient. Friendships are forming, hearts are mending and courage is building as we form a community dedicated to non-judgmental support and genuine care and concern.

A while back someone suggested a The Fibromyalgia Fun House t-shirt and that got me going... I realized people were proud to be a part of this community, were gaining strength from it and wanted to show it off. So I set about starting a business that would one day turn into a non-profit. I put together a Doctor Appointment Packet for those that are having a hard time finding and communicating with a good doctor to get their symptoms managed. I bought domain names and copyrighted writings and ideas and trademarked a logo. Then I took a leap and ordered custom awareness bands. Following our Purple Pain Code I designed them to represent all the phases of suffering we go through, and they gradiate in color just like our The Fibromyalgia Crusade ribbon. I was nervous, for this was money out of my pocket and I was still a bit unsure all these "friends", all the supporters, were for real and not just a figment of my imagination.

And then the strangest darn thing happened...I started getting orders! They started pouring in and I knew for sure I was not hallucinating the whole thing! People are actually wearing these bands with pride and telling their friends and family about the blog and support site and the Purple Pain Code and low and behold, folks, we are in business! The t-shirts are taking a long time to perfect. I will only sell a quality product I will stand behind with pride and when the t-shirts get there, I will start selling them. You gotta remember a Fibro patient is running this whole thing! But I sincerely thank each and every one of you for your support and participation. When writing my business plan I had to describe my vision, my goal. It is to become the internationally recognized symbol of Fibromyalgia awareness. When one thinks breast cancer the first organization that comes to mind is Susan G. Komen. When Fibromyalgia is understood on a household level, when we are no longer treated like crazy lazy junkies, when the word is out and the name Fibromyalgia is uttered, the first thing that will come to mind is that gradiated purple ribbon and The Fibromyalgia Crusade.

Thanks for joining,

Tuesday, December 21, 2010

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 dreams and goals and ambitions are very much alive and well, but my body will not cooperate! I am limited and dependent and very very frustrated.

I am a survivor and I am a fighter. I am NOT a hypochondriac, faker, dramatic, lazy, crazy, wimpy, a junkie, scamming the system or making this up. I am in pain and would give ANYTHING to have my life back the way it was before I got sick. But until medicine and science can figure out the cause and cure, I am working very hard to manage my life around this illness. Every day that I get up is a fight, a fight for myself, my family, my quality of life.

I am a person. I am a person who was walking around minding their own business and one day got sick. I am a person who still has plenty of life to live, love to give and memories to make. I am a person not unlike you. I am a Fibromyalgia patient.

Thanks for joining,

Monday, December 20, 2010

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 it on indulging our whims like little children with no self control. We have been through a lot these last 5 years (since I got sick) and are road weary, exhausted, spent and on the verge...and no one (who has not been there) really understands. It is so frustrating to call up a good friend or close family member and when you honestly tell them you are not doing well they say with shock and surprise "OH NO, WHAT'S WRONG?". Oh it just makes you wanna hit 'em, eh? I HAVE FIBROMYALGIA, that's what is wrong! The most menial and basic tasks are monumental to me! I cannot live in the pain I am in, with the limitations I have, and the foggy cloud over my brain, and have a good quality life! That's what's wrong!

That is the precise reason why The Fibromyalgia Fun House and this blog have become so important to me. I have an entire community of friends that understand! Intimate, first hand knowledge of how hard life is with Fibro and whatever other myriad of illnesses we all seem to have. And with our Purple Pain Code it makes it all that much easier! With one word I can communicate to you all how I am feeling and you get it. No pathetic attempts at explaining, no struggling to put words to feelings others cannot possibly comprehend as they skate along with their healthy little lives. I am grateful to you all, my readers, my friends. You have given me so much. But we are heading into a particularly hard week, one where a frenzy of things need to be done. Many of us will doubtlessly gather together with family and the struggle normal activity is to us will become apparent to them. And many will put in their wonderful 2 cents of ignorance about how YOU can fix it or it is not real or you are faking or being dramatic or whatever other wonderful judgment will be passed. So we are going to spend the first few days of this week arming ourselves up to change the reality of this experience.

1. Honestly assess EVERYTHING you have to get done between now and Thursday night. Make a list, starting with the most important and ending with the least. Do your best, pace yourself, but if you follow this the worst that will happen is little and insignificant things will not get done, and that is not that big of a deal.
2. Start practicing and preparing how you are going to respond to inquiries, judgments and jabs about your health. Stand strong in the collective power of your community, The Fibromyalgia Crusade, and come up with ways to keep your power and put the doubt back on the doubter! We will be working on this all week...
3. Remember this is your holiday too and try and have fun.

What my husband and I decided at the end of our conversation yesterday was that we are going to stop burying ourselves in the "should's" of life. When something comes to mind that we need to do but are not, we have 2 options. We can either do it or forget about it. We are not allowed to turn it into an anxiety producing experience that sucks our energy and turns our mood sour. Now wish us luck... Blessings to you all, happy holidays and stay connected, because by Friday we are going to unleash a POWERFUL group of Fibrates on the world that are going to enjoy their holiday!

Thanks for joining,

Saturday, December 18, 2010

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 work it this year. Maybe that is why I am doing the ostrich head in the sand to Christmas, just pretending it is not happening. It has commanded way too much of my attention in years past and this is my attempt to balance.

We will buy the puppies some gifts and wrap them pretty under the tree. Yorkie unwraps gifts and it is one of the funnier things to watch. He even has his own special dog paper, but he already knows which ones are for him without it. This year he will have to share with his sister and that should be an interesting one. Porkie needs a stocking, too. So I guess I will technically be buying a few gifts but the $40 we spend on the children doesn't really count. It is awkward, though, to try and opt out of gift giving with the family. I cannot receive without giving, it just feels wrong, and I know people are going to give us gifts! I have made it very clear we are not exchanging this year, for if my husband is not getting one, no one else is either! But people don't listen. They get caught up in the excitement of giving and don't realize how embarrassing it is not to be able to afford to exchange even small gifts. My aunt came to visit today and brought us a few fun things, and I gave her a The Fibromyalgia Crusade awareness band! I felt so stupid! She liked it and wanted one anyway, and even bought one for her friend, but still... It is impossible to escape Christmas! And it is not even Christmas itself I have the problem with, it is all the rest of the excessiveness that goes with it. We are going to church, hanging out with our loved ones and enjoying time together. That is what Christmas is about for us this year. We are counting our blessings, which are numerous and bountiful, and enjoying the gifts of each other. And I can guarantee you, come February when no exorbitant credit card bills come due, I will be glad we did it this way!

Thanks for joining,

Friday, December 17, 2010

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 conditions, mine happen to be pancreatitis and strokes. Being that sickie lying on that gurney, feeling a horrible combination of heavy duty narcotics and pain, impending doom and a background of hope buried somewhere...well it is no good!

She is currently on the mend and doing quite well. Her friend that is taking care of her is having to stop my mother from doing things constantly (wonder where I get it from) and she is already back to her determined and feisty self. Yours truly, on the other hand, had the worst Fibro-flare today that I have had in years! You name it, it hurt. I was LMA in mood, there was a bag of cotton balls stuffed between my brain and conscious thought. My vision was blurry. I was like a walking zombie even after 10 hours of sleep and was just too darn uncomfortable to be awake. It was not just one symptom or another popping up, IT WAS ALL OF THEM AT ONCE. That is what Fibromyalgia was to me a few years ago, each day a game of "surprise" as to who I was, where I was and what I was doing, filtered through a pain and medication haze of confusion. It reminded me with acute accuracy how far I have come and how miserable my Fibro was before I moved to Arizona. So I did what any good patient does when remaining conscious does not seem to be a viable answer and drugged myself back to sleep! I feel a bit better now, especially since my husband stopped by the Mexican market and brought me home Pan and Tres Leches!

I myself am now on the mend as well (I think, I hope). My mother had a similar surgery this past summer and it was a lot less hard on me, looking after her then. My Fibro is just not as well managed as it was before the strokes. It sucks, but deep below all that Prednisone energy I was already wondering if I was as managed as before. I had worked my butt off to get to where I was a very functional person. I was learning Spanish at the community college, working more than ever, had lost the majority of the Lyrica weight and was enjoying life again after a long and dark hiatus of years of misery and pain. The strokes are turning into a bit more than a minor set-back. Anything medical is a major setback when one has Fibro, and doctors just don't seem to get it! Unless they have had it, that is. So one foot in front of the other, I will find my way back to that path of progress and minimize Fibro's impact on my life. Until then I think I am going back to sleep...

Thanks for joining,

Wednesday, December 15, 2010

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 manifesting themselves in my slow metabolism and I have really packed on the pounds! I never bothered to get a tan this summer, too preoccupied with post-stroke recovery, and at this point I am pale and white and purple vein-ey and that coupled with FAT is not terribly attractive. I have been wearing closed toed shoes for 3 weeks now because I need to paint my toenails, I have dirt under my fingernails, I am bloated to the point that a pregnant person looks skinnier than I do. Basically I am a disorganized hot-mess! I need to go to the grocery, pay the bills, take the dogs out and all of a sudden, BOOM, I am on overload. A bunch of menial tasks that are not really that important standing alone have formed into one big balloon of "You are a failure at your life" in my brain and I freak out...

I have also been late to two doctor appointments this week. Like 15-20 minutes late. I cannot seem to get myself together! Do I need to put every doctor on speed dial on my cell phone so I don't create near-accidents trying to read the phone number off their business card while driving wildly down the road? Do I need to write the appointments down in my planner for 15 minutes earlier than they actually are so I am on time? How pathetic! I used to be the most uptight queen of punctuality. I was always early everywhere I went. How did I turn into this person? When did I turn into this person? I am sitting here utterly confused...and it hits me. I no longer have the structure of a job outside the home to regiment me. A significant portion of my life was on someone else's time table and I could force myself to conform to that structure just fine. But now all of my life is on my time table and I am not the most disciplined when it comes to routine. But I need to be, for like most Fibromyalgia patients, I do not function well with chaos. It is up to me to create the structure, the routine, that fosters organization and progress out of each day. I have to be a big girl and figure this one out! Send myself to reform school or something! Sheesh!

Last night, with me nice and mellow from anxiety-attack Xanax, my husband and I start unwrapping all the ornaments so we can decorate the tree. My husband is having a hard time. Every birthday or holiday that comes up since I had my strokes cause him to reflect on the possibility of me not being here, had I not survived, and he gets very down. It is hard to watch, breaks my heart, but it is the process he must go through in coming to terms with all of this so I fight the urge to give him a pep-talk and instead allow him to wallow in his negativity. One thing I have found about negativity is that going there is sometimes necessary, but we don't like to spend a lot of time there. It gets late and we have yet to put one ornament on the tree. He does not want me to decorate without him but needs to go to bed, so I promise him I will wait until Thursday night so we can do it together. He gives me the most confused look and says "No, this is wrong, that is not something you will do. It is just strange!" It is in that moment I realize this person I have become may be late or disorganized or knee-deep in chaos, but I sure have relaxed a lot too!

Thanks for joining,

Tuesday, December 14, 2010

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 have had to explain too much, did not really know how to explain it, for CFS & Fibromyalgia still confused the hell out of me! I was not going to write a pity letter but there was nothing else to write about, for my illnesses consumed me.

I was ashamed. I did not want the world to know because of those that did know, many had judged me harshly. I was still walking through my many stages of grief and had yet to come to terms with my reality, my diagnosis. In the back of my mind I doubted this diagnosis of exclusion, Chronic Fatigue Syndrome and Fibromyalgia, until I saw the blood test results from The Fibromyalgia & Fatigue Center and Stanford Hospital and underwent serious viral suppressive therapy, recovering from CFS. Even then I was private, quiet about my reality because I was left with some strange pain syndrome that annihilated my ability to live a normal life but was nothing most had ever heard of. Something few understood. So I remained hidden behind the cheerful facade of a smiling happy family photo and silence. But this year something is brewing, something is bubbling to the surface...

Something inside me broke when I had those strokes in July. Maybe I am just old enough now to be comfortable with myself, confident in who I am, I don't know. But what I do know is that I am no longer content to be quite about what I have. Going public with my blog and starting a support site, naming myself the leader of The Fibromyalgia Crusade and marching full speed ahead into Fibromyalgia awareness has sparked a responsibility in me. I will be sending a letter this year, for the first time in 5 years. I am going to tell all my friends and family, with pride and dignity, what our family has been through for the last 5 years. I am going to invite them to check out the website and learn a little bit about what we are doing to raise awareness. I am going to end the ashamed silence I have lived in for the last 5 years. I am not ashamed anymore, nor am I confused. I am as clear in mind and soul as I have ever been. Besides, I have a new daughter to introduce...

Thanks for joining,

Monday, December 13, 2010

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! Then I show up late to my neurologist appointment after hitting every red light possible and at this point I am ready to scream, pull my hair out and smash a window.

This weekend was a rough one for me. It was that wonderful time of the month that usually precipitates a flare. Couple that with my reduced dosage of Prednisone and I was quite a nightmare to be around! I sat there listening to my husband lecture me about how when I am in a bad mood the whole room feels it. My aura is too big to be contained, I just radiate negativity. Thanks sweetheart! But sadly he is right. When I am in pain I may think I am saving him, or whoever is around me, from my wrath by keeping quiet. But I am still flinging that energy, that negative, desperate, angry energy around the room for everyone else to absorb. It is not fair to any of us, but I am sorry, I am not going to plaster a fake smile on my face and adopt a high-pitched cheerfulness to my voice when I feel like my body is ready to crack into 1,000 pieces! So what to do? When I figure it out I will start selling that and will surely make myself a millionaire!

How can we combat this awful combination? How can we be allowed to feel without bringing down everyone around us? How do you combine pain and pleasantness? We have all been around perpetually negative people and they do indeed suck the energy out of the room. I really don't want to be that person! I have found two things which help me out of a funk and guide me back to a positive place. Yoga and laughter! Yoga stretches my sore, tight muscles, releases endorphins and psychologically I feel like I am doing something to help myself. And laughter, well, I don't  really need to tell any of you how much a good belly laugh a day will do you. More than a few times I have sat down at my desk, that ready-to-kill mood oozing out of me and desperately scrolled through The Fibromyalgia Fun House wall until I come across some hilarious post or ridiculous comment thread that gets sillier and sillier as it goes on. Before I know it killing everyone does not sound nearly as attractive, I am laughing at the absurdity of life and find I have regrouped my psyche so I can get back on a positive platform. Life with a chronic illness is hard. Finding ways to manage it even harder. It is the little ways we can flip our thinking or change our mentality that make or break the difference between devastation and coping.

Thanks for joining,

Saturday, December 11, 2010

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 spent the middle of my 20's in therapy for Major Depressive Disorder. There was absolutely no reason for me to be depressed. I had just moved to San Francisco, the city of my dreams, with the love of my life who had just become my husband. Everything should have been fine. Yet I would storm up and down the streets of North Beach, stopping in churches here and there to beg and plead with God to fix me. I would march up and down Pier 39, observing the happy tourist families and couples laughing and enjoying life and each other, all bent out of shape at their good fortune. I was so bitter and angry and incapable of "snapping" out of my funk. I was even pissed at the homeless that would bombard me for change daily on the way from the bus to work! Why the hell did they not have to get up and go to work and be responsible and take care of themselves? Why were they off the hook? Yeah, I had the angry bitters pretty bad.

In therapy I obtained tremendous amounts of clarity about myself and how to navigate out of depression and into the life I choose, a life of happiness. I learned about responsibility and how my choices affect my reality and how much hard work is required to take what you are given and fashion it into a life worth living. It took a lot but I fear for how I would have handled CFS & Fibromyalgia if I had not discovered the choice of attitude before they consumed me. As I lower my dosage of Prednisone, Fibromyalgia is taking huge biting hunks of flesh out of me (not really but that's what it feels like) and I am reminded again how hard it was to get that beast managed. I am not where I was pre-strokes. I am in a lot more pain and on the "verge" of illness constantly. I need lots of sleep and am pretty unmotivated! I vacillate between knowing I am using excuses to get out of pushing myself and reminding myself that taking it easy is necessary for me to heal. Well which one is it?

But the choice is always ours. We can allow our trials to define us or become a part of us. It is hard work to not give into impulses and fear and laziness! For some reason the human condition seems to like to go there. Maybe it was all those years in caves as early man, who knows? But I do know I can sit around and whine all day about how much pain I am in or how I don't want to walk the dogs or how I need to clean this or cook that but feel terrible so I do nothing...or I can pace my activities and recognize that I am gonna hurt regardless, so I mine as well take some control back in my life and start where I get the biggest bang for my buck. My morning walk and yoga set the tone for the rest of the day. It is an investment in my health and well being that feeds my brain with the information that I matter, I am worth making a priority. I know the only way back to managed Fibromylagia comes through hard work and determination. Couple that with a healthy dose of self-respect and compassion and I will find my way there again. Oh, but there is one benefit to not liking one's childhood. I am 34 and don't have any laugh lines!

Thanks for joining,

Friday, December 10, 2010

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 tell...

I created these custom bands to be representative of our three colors; Lilac, Mulberry and Amethyst. The colors we use to describe our pain and functioning levels on a daily basis. Our "code" to each other that clues us in to how we are feeling in mind, body and spirit. I wanted something different, eye-catching. I wanted bands that would stand out and make people ask, "What's that for?". I wanted conversation starters! And I think they do the trick. The Fibromyalgia Crusade is stamped into the varying shades of purple and the three colors blend into each other beautifully, providing a pretty good intro into the explanation of Fibromyalgia. But we have to have our response down pat! We cannot be fumbling for words, struggling to explain how some strange illness makes us feel individually. We need a sharp and crisp clinical definition that rolls off the tongue with ease. We are going to great lengths to increase public awareness and do not want to waste any opportunities to spread the news. For the more people that know the more seriously we will be taken.

Fibromyalgia Syndrome is a neurological disorder stemming from the central nervous system which causes a sensation of severe body pain, stiffness, fatigue, sleep disturbances, cognitive confusion/impairment and other debilitating symptoms. The cause is unknown and there is currently no cure with limited treatment options. The Fibromyalgia Crusade is an awareness campaign designed to unite the patient body into 1 strong voice and raise awareness of this illness to a global level. 

So let's see how this goes. The bands are latex-free, 8" in diameter. They fit my wrist loosely (which I like) and my husbands comfortably. The cost includes shipping and tax, so there are no "hidden fees", and you can use PayPal or any major debit or credit card. 5% of the profits will go to Fibromyalgia research, I just have not decided which organization yet. You will be supporting a great cause, spreading awareness and getting people to talk about it! After all, that is the whole point of an awareness campaign, isn't it?

Thanks for joining,

Thursday, December 9, 2010

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 did not have a choice. So the irony is not lost on me that the treatment for my particular stroke-causing condition is high-doses of Prednisone for months on end.

WOW that was a wild ride! Besides being a manic and frantic freak-out stress-case shaking with tremors, packing on the pounds from shoveling sugar down my throat and growing hair all over my body, there were 2 good things that came out of that experience. "Normal" energy levels and NO Fibromyalgia pain! But here I sit, nearly 5 months later, slowly weaning down off the steroids and feeling AWFUL! Oh I am in pain, unmotivated, sleeping 10-11 hours a night, lazy, irritable, thoroughly annoyed with everyone else's emotional histrionics. No patience, no compassion, no sympathy; for the acute misery of life with Fibro is rushing back to me and it sucks a big fat toe! My logical side knows my body is finally getting a chance to heal and repair from the strokes now that I am not full of false drug energy. But my emotional side is having a hard time adjusting. I got used to doing 4-5 things in a day! I became conditioned to expect a certain level of productivity out of myself. I came to rely on unwavering motivation and boundless production. I was allowed to be my natural type A again with no consequences and I liked it! On my Prednisione high I even fought with my husband over watching TV. I certainly did not have time for it, was way to busy to sit down and be bothered. Now I have to take breaks in between activities and have resumed my relationship with the television, putting her back in “best friend” status.

I will heal from this. I will go back to who I was before the strokes, just that much better for having survived yet another life-threatening crisis successfully. I will get Fibromyalgia back under my thumb. I will lose the weight I have gained, catch-up on the sleep I have missed, resume the exercise I keep skipping, settle into a routine of fruition. I will move forward in my life. And it will be real, sustaining, long term progress. Thank God there was a treatment for the strokes I suffered from, that the 8 more I was mere minutes away from having did not claim my life. Although the treatment has been brutal, it is, like most else in life, well worth it. For I am alive! I may be in pain, fog-brained, tired, sick of being sick and totally unmotivated, but I will prevail. I will keep on keepin' on because I have to. I have this one life to live and no matter what is thrown in my path, live it I will!

Thanks for joining,

Wednesday, December 8, 2010

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 did and often have to "sit" out on the fun stuff. I feel horrible about it but try and keep a smile on my face and pretend it does not bother me. I tell you its okay for you to go. The last thing I want to do is ruin your life too.

I have moments of desperation, excruciating pain and fits of rage and anger. I am also full of love and hope and a strength few possess. For to live in the pain I live in, do the things I do to maintain the illusion of normalcy, the lengths I go to in my efforts to preserve a quality of life, those are not for the weak of heart. I am as strong as they come and my reality now dictates that I fight for myself every day of my life. I am often at the mercy of side-effects of medication and exhaustion and can be snappy. I am sorry if I take my frustrations out on you. It is not you I am mad at, it is the diminished capacity I am left with because of this chronic illness.

When I got sick I went to the doctor. They could not find a reason for the pain and ran an exhaustive list of tests attempting to source out the problem. They could not find a medical abnormality so they gave it a name by diagnosis of exclusion. A name the medical community invented, yet sectors of it refuse to "believe" in. Many have blamed me. I have been labeled crazy, lazy, wimpy and a junkie. I have endured emotional abuse in my efforts to get out of pain so I can just get back to living my life. This illness will not kill me, but until a cause and cure are found I will have it forever, so it is something I cannot ignore and must learn how to manage. My life has not turned out like I thought it would, my health is the center of my universe and the ease with which I am knocked off my axis surprises even me sometimes. But I still have hopes and dreams, goals and ambitions. I still want to laugh, love, enjoy and savor. I still want to experience all life has to offer. So please bear with me as I navigate my way through this journey. I am seeking my balance. I am searching for my limits. I am putting everything I have into getting through each day, and at the end of each one I am still me...

Thanks for joining,

Tuesday, December 7, 2010

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 without fresh clean socks on, which of course I forgot those as well, so I just have to roll with it. Once I got to my friends house I quickly received a call from my mom inviting us for coffee 'cause she was running errands over near where I live. Then the next thing I know we have plans to meet and go shopping and it is not that I don't appreciate the offer, I just was not prepared for it and found myself getting super stressed out about the whole thing.

Now instead of going along with it I pumped the brakes and turned it back into just coffee. We met up with my mom, chatted and had a nice time. But then we head home and there are the dogs to deal with. Porkie peed on my friends new carpet and it is darn near 4:00 in the afternoon and I am quickly becoming supremely annoyed with anyone and everyone crossing my path. Serious hormonal irritation. Every explanation frivolous and unnecessary, every question inquiring what is wrong like fingernails on a chalkboard. You know, A BAD FREAKIN' MOOD! So it takes me a while to calm myself into not taking everything so darn seriously and relaxing at home. It takes a moment of reflection to remove the emotion from my day and look at it objectively. I am not used to having to consider other people. I don't have children, my husband is pretty flexible and my first priority, I don't have people counting on me at certain times unless it is a doctor appointment or something along those lines. I have a pretty controllable existence, have made it this way as much by choice as necessity, and get irritated when others try to manipulate my time to fit their agenda.

It is so hard, day in and day out, to live a full existence. Every once in a while I find myself attempting it, like today, and each time I'm knocked back down while at the same time I am reminded how far I have come. I don't want to be the daughter that says no, can't get together with mom 'cause I am too busy. But in order to keep my life and therefore illness in balance, I might still have to from time to time. I am at the point in my recovery and management that it takes my daily allotment of energy, creativity, planning and determination to accomplish my bare bones responsibilities. I don't have two to give out at the same time. As the strokes recede farther into the background of my life it is easy to forget, to squander the precious gift of life. But I will not let that happen. So sleep tight my friends, and do what you need to take care of you... Oh it is always so interesting to see what tomorrow will bring.

Thanks for joining,

Monday, December 6, 2010

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 so it did not dry into a fire waiting to happen by the time Christmas actually rolled around.

My mom did something really cool. At my bridal shower she surprised me with a box full of ornaments she had been collecting since I was born. She bought me 1 each year and I entered married life with 24 beautiful ornaments, each reflecting the time and place of their purchase, from 1976-2001, to decorate my tree with. But the tree was the problem. My husband grew up with fake trees and hated them but I could not stand the outrageous price of a fresh one! We were young and broke and living on love, hardly able to afford the $60 trees always seemed to cost. As the years passed I started developing an ethical dilemma with the Christmas tree. It seemed so frivolous, such a blatant example of the human ego and consumer excess. Trees were planted and harvested so they could sit in our homes for maybe a month to die and then were dragged to the curb and thrown into a landfill. I started balking and gave my husband a choice, a living tree or a fake tree. For quite a few years we bought living trees. They always looked pathetic, small and droopy. They could not support the weight of the ornaments and never lived long enough to make it to the next year. My poor trees never blossomed into the majestic evergreens the fantasy of my mind thought they were meant to become. My husband was supremely irritated with me.

A few years back we were faced with the tree dilemma for the umpteenth time. We had a half-dead pine sitting on the patio, but it was not suitable to decorate. Strolling through Wal Mart one afternoon we stumbled into their garden center that had been transformed into an artificial tree extravaganza. I was sick with CFS and Fibromyalgia at this point and finally got him to agree to a fake tree. He knew getting me to Wal Mart was an event in and of itself and did not have positive hope in getting me to the tree lot as well. We found a great tree at at great price and thus my love affair with the artificial tree was born. It already had all the lights, you just pulled it out of the box, stuck the pieces together and plugged it in! Throw on those 24 ornaments plus a few others we had collected along the way and viola! Christmas was decorated! I did not realize how much I loved my artificial tree until the second year we had it, when decorating for the holidays cost me nothing and setting it up was so easy I could do it myself! I even got my husband to reluctantly admit the tree was beautiful and he could not tell the difference. Now I don't even think he notices or misses the "real" tree we battled over all those years. So tomorrow the carpet gets cleaned and this weekend the tree goes up. And the greatest part of all is I don't have to take it down 'till Superbowl, for it never dies!

Thanks for joining,

Saturday, December 4, 2010

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 day is long. The family trip to Laughlin, Nevada for my in-laws 25th anniversary was a gambling extravaganza and she kept feeding us money to play the slots. We were so broke that when I finally won a bit and wanted to keep it she got pissed off that I was not going for gold, settling for copper. That was my mother-in-law.

Sadly she passed away 6 months after we got married. It was heartbreaking, devastating, and one thing that still sticks out in my mind is my best friend telling me that our lives will go on, but she will not be woven into the fabric of our experiences, just a bit of representation at the beginning. That has sadly been true. She was a medical professional and worked for private clients, usually taking the night shift. She was the one that would provide in-home care for end of life patients. Tough job for one tough cookie! My father in law suffered 2 strokes when the kids were still in the home and he was quite young. I believe it is all this exposure to sickness that makes my husband look at me like I am nuts when I go on and on about how amazing he is for sticking it out with me through my multitude of illnesses. See health problems are not foreign to him! So many live in a bubble of this perfect little dream life and when one upset comes they bail. We all have friends or family or even ourselves that have experienced that. I myself lived in that bubble before I got sick, but to my husband health problems are a part of life and you just roll with it...and roll he does...

At our wedding my mother-in-law was the one that made the speech, being the more outspoken of my husbands parents. Her words were short, concise and to the point. She said everything she needed to say in a few quick sentences. "I am not losing a son, I am gaining a daughter, and to me she is Platinum!" To be compared to Platinum by that lady is akin to likening ones pride and dignity to Jackie O. Powerful! Oh we miss her. We miss her so much, she was the glue of the family, the one that brought everyone together and ALWAYS had the final word. I know beyond a shadow of a doubt that my husband can deal with me and all my antics and craziness because compared to his mother, I don't even hold a candle! May she rest in peace...

Thanks for joining,

Friday, December 3, 2010

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 devastating than the reactions, criticisms and judgments of people. Be it family, friends, strangers or co-workers, we are desperate for compassion and understanding, yet seldom find it. What we seem to find plenty of is negativity. So in an effort to "yin yang" that negativity we must infuse positivity!

"What, is she nuts?" you might ask. "I am the one that is sick and hurting, cannot function, work, take care of myself or my family, and now I am the one that is supposed to bring positivity to the table?!" And I am saying YES, you are! And for that exact reason, you are the one that is sick! You are the one that cannot deal with stress, trauma, judgment or devastation. All of your energy is already being used up to exist with your illness. You do not have any to give the cold, dank and dark in life. Can you build a little bubble of goodness to live in, ignoring the ignorant and hateful? Can you refuse to listen to or surround yourself with those that will doubtlessly put you down or criticize you? Can you listen to someone spew hate and anger and mean nasty things at you and simply walk away with a smile on your face, knowing they DO NOT MATTER? That is a question only you can answer for yourself. But I can tell you I sure can! I can let it roll off my back, bounce off my bubble and back onto them, not permeate my reality because I have too much else to focus on. Managing my health is darn near a full-time job, then there is work and family responsibilities and that wonderful quality of life issue. I am way to busy living my life to take the time to listen to the haters and inciters of this world. Let them exist in their small-minded misery. Let them swim in the cesspool of crap they are eternally stuck in, their negativity and anger sucking them deeper and deeper until they eventually destroy themselves. You need not spend one second more of your precious energy or positivity on them. Only focus on you.

For it is in living well that the best revenge is served. It is in not caring or allowing the bad in life to take you down that you prevail. It is in walking away and not giving it one more thought that you overcome their negativity. Arm yourself with a few short replies to the myriad of off-putting comments that will come at you and then become an expert at CHANGING THE SUBJECT or simply walking away. This is one more step in The Fibromyalgia Crusade. One more step to getting our lives back. One more step to taking control. Eleanor Roosevelt said it best; "No one can make you feel inferior without your consent." There is such deep truth in that statement. Stand strong my soldiers! One thing I have learned in the 4 short months this blog has been public is the storms rise up like clock-work. Everything will be calm and good for a few days and I will think in the back of my mind, "What's next, where is the next upset going to come from?" And sure enough, it comes. Again and again. I can only assume these are the lessons I must learn in life in order to move forward. But I cannot get stuck, tangled up in them, or I will never reach my full purpose, fulfill my destiny. We have each other, some are lucky enough to have friends or family that support them, but most of all you have yourself. The one person that will always be there for you, understand you and love you. But only if you make 'em!

Thanks for joining,


Thursday, December 2, 2010

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 maintain a skeleton of a life. I had a choice to make, obsess and spiral downward or learn to let it go. Oh that was a hard one! I chose to let it go. Every time I would think of this asshole I would have to take that anger, wrap it up in a neat little package and let it float off into the universe, standing firm in the belief that no bad deed goes unpunished. There are things you have to answer for, if not in this life than surely in the next.

See there is so much we cannot control in life! So many infuriating and frustrating and down right unfair things. We will doubtlessly come into contact with liars, harassers and haters, the evil of this world. We will sometimes fall victim to their antics. We will cross paths with users and scammers and tricksters and unsavory characters. It is inevitable. But ultimately the way we react to this scum is our choice, and the only real control we have in the situation. I find I can sit there and have what I call a "circular argument" until I am blue in the face and no longer have breath in my body. It is an irrational argument with an irrational person that will never result in a rational conclusion because you are not dealing with sanity! Or I can take a big fat swig of "let it go" and do just that, let it go! Let them be on their way, believing what they want, behaving like the mean and small-minded individuals they are. Sadly enough, more often than not, you are dealing with a broken spirit that has built up a facade of strength through ugly bullying and harassing antics to hide the pain deep in their souls. But that is not our problem.

As one darn funny comedian, Katt Williams says, "So what she/he keeps talking about you and hating on you. What do you think a "hater's" job hate! If you have someone hating on you right now you better think of how to get 5 more people hating by Christmas! You need haters to make you stronger...without haters most people wouldn't try to become better. Just tell them "Bitch you just hate me because you can't be me..." So yes we will continue to come into contact with the crazy, the negative, the BAD people in life. Sadly there are just too many of them to avoid. But we will put them in the proper perspective of our lives. They simply don't matter. Their opinions don't make a difference, their ignorance only shows how pathetic they are. I know I can truly judge myself at two distinct points in my day. Those first few moments when I open my eyes in the morning and those last few moments before I close them at night. It is then when the raw and true content of my soul is open to my conscious. If what I find there is good, than I am okay.

Thanks for joining,

Wednesday, December 1, 2010

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 many of them and there were plenty of hurt feelings and stepped on toes along the way. My job...oh let's not even go there. But when I first got sick my husband had just started a new career and was making friends there. He is a very private person with his "personal" business by nature, so we let it be known I had some health problems but NEVER divulged the true extent or extreme impact it was having on our lives.

We chose the "hide it from the world" route and continue to do so still to this day. We have never let on how much my illness has cost us; emotionally, financially, psychologically. We have indeed worked very hard to "keep up appearances". This prideful approach has hurt our relationships with many who don't understand our choices or limitations. They view us as selfish or inconsiderate, spoiled or self-absorbed, not realizing we are simply a paycheck away from bankruptcy! The judgment and criticism we have received from many sources over many topics is the price we have paid to maintain that pride. Is this the right way to do it? Is this the best course of action? Who knows? I just know it is the road we chose to travel down, pride and privacy winning out over pity and pardon.

Perhaps that is why it took such extreme measures, two strokes at the age of 33, for me to stand up tall on top of that pride and go public with my illness, my experience being sick. My mother and father both were enlightened by reading my blog as to how horrible my journey really was, how hard I have fought this illness to regain some semblance of health. That surprised me, I thought they knew, I thought I had been telling them the entire time... But it is extremely difficult to comprehend the reality of living with Chronic Fatigue Syndrome and Fibromyalgia unless you yourself have lived with a chronic illness. That is why it is so important to find a network of fellow-Fibrates to commiserate with. You will find it takes 1/4 the energy to communicate your misery to them than it does to those that have never been through it. I did not want to be a sloppy mess of a sick person begging and pleading for the compassion and understanding of every opinionated and uninformed Sally and Sam out there. So I put on my happy face and pushed my sick self to fit into a world that did not allow for my weaknesses. I have suffered for this choice, I have paid a price. But who is to say showing the vulnerability of honest and open suffering would not have damaged me more?

Thanks for joining,