coffeebarconfessions

WARNING: I am not advocating this practice, simply telling the story of my experience! Some of you may have heard of The Master Cleanser , or "Lemonade Diet" as it is also known. Plenty of celebrities have done it, Beyonce and Denzel Washington to name a few. It is an old-school, hard-core, un-scientific extreme cleanse where you eat no food at all and drink a strange concoction of lemon juice, maple syrup & cayenne pepper multiple times a day from 3-40 days depending on how long you can take it or how much you want to cleanse. Believe me, it tastes as good as it sounds! I have done The Master Cleanser two times. Once for 7 days and another for 12. The first time was brutal. Every second of every hour of every day I was craving some gooey delicious food or another. Pizza, cheeseburgers, steak, buttermilk bars...you name it and I was dying for it! My husband did it with me and there was no food in the house, no cooking, just squeezing a lot of lemons and making sure he ...

What a weekend! I must be a glutton for punishment because I am glad it is Monday and I can get back to work, back to my routine, back to some discipline! I have control of my activities and no one to answer to (except myself) and I can resume exercising and crusading and cooking and cleaning and bathing puppies, all those oh-so-exciting things my life consists of. Yesterday I felt like my ribs were poking my back in all sorts of awful ways and I just hurt . That all-over body hurt known to an elite group as Fibromyalgia. I pretty much did the exact opposite of what is necessary to manage my Fibro over the Thanksgiving weekend. I ate lots of fattening and processed and sugary foods and did not exercise and relied on medication to keep the pain at bay. Problem is I don't really take anything strong enough to do the job good old fashioned lifestyle usually takes care of. If there was any doubt in my mind that my Fibromyalgia is managed by the 5 pointed star of health (diet, sleep, e...

I see a great many of you had some pretty awful emotional encounters this last week as we gathered with family and friends we have not seen in a while. More than a few were subject to off-putting remarks and rude, blatantly disrespectful behavior. It grieves my heart to see this and as unfair and inappropriate as it is, we have to arm ourselves so this does not keep happening to us! We have to have quick and effective responses at the ready and a thick skin their criticism and judgment cannot penetrate. I know it seems they should have compassion and understanding, it should not be our job to educate them about our condition and they most certainly should at the very least be nice, but unfortunately that is just not the way it is! We all learned a long time ago life is nowhere near fair and this is one of those blaring examples that remind us some people have mean and negative streaks and will take any opportunity to prey on the vulnerable in order to feel better about themselves. On...

Thanksgiving in 2004 consisted of watching my husband eat turkey dinner from the hospital cafeteria perched on his roll-away chair while I laid chained to my hospital bed by an IV, MPO. It was during my most severe Pancreatitis attack, the one that precipitated all these health problems I have been plagued with since. My celebration was a push-button of Dilauded that would zonk me out so as to dull the true pathetic-ness of my situation (and the unbearable pain of Pancreatitis). In 2005 we planned to spend the day with my college roommate and her new husband and then head into San Francisco to see Cirque du Soleil in the evening. I wanted to bring still-puppy Yorkie with us to their house, not wanting to leave him alone for 14 hours or whatever ridiculous amount of time we were planning to be gone. My friend had a cat. A giant indoor cat that Yorkie would chase around tirelessly trying to get her to play with him, bouncing up and down in front of her as if on hydraulics, barking. Well...

My husband and I were sitting at the coffee shop on the patio with Yorkie & Porkie last weekend when a man with his 3 children came wheeling by. He was a pleasant looking individual I presumed to be in his late 40's, early 50's. The children were darling and seemed to be around 6, 4 and one in a stroller. I thought to myself how nice this picture of healthy and normal Americana looked. I imagined mom was at home resting and her dutiful husband had taken the children off her hands for the morning so she could have some much needed "me" time. Boy was I ever wrong! Mama walked out of the coffee shop and when she joined up with them I was quite surprised. She was young and hot! Looked my age (mid-thirties) or younger with a PHENOMENAL body clothed in skin-tight yoga gear with a caboose that would not quit! I looked at my husband and said "Boy, I sure did not expect that one!" He agreed and stated that was a woman that takes good care of herself. When I comm...

Last night I started tackling that dreaded business plan that has been giving me so much stress. I ignored it all weekend until I stopped being scared of it and started feeling really pumped up about it, viewing it as the road map of The Fibromyalgia Crusade and curious to see where it was going to take me. I was not sure where I wanted to end up, so knowing how to get there is quite impossible without first figuring out my desired destination. But once my husband and I sat down and started collaborating our goals, ambitions and dreams for this awareness campaign it started coming together. And it is bigger than even I thought it was ever going to be! We are going global, we are going huge! What started as a girl with a bit of writing talent and a strange illness blogging about her trials, tribulations and triumphs turned into a fabulous support site on Facebook . The experiences I had there, the people I met and stories I heard stirred in me a deep and intense desire to DO SOMETHING...

What is now known as Autism, a neurological disorder of unknown origin, was classified as "Childhood Schizophrenia" during the early years of its mainstream induction. That is a pretty off diagnosis if I have ever heard one! As the older sister of an Autistic brother I watched my parents struggle in the fight to raise their child. Their battle was not only in managing an angry and confused little boy with overly-sensitive sensory abnormalities and perceptions, but in fighting the world at large to understand and accept who their child was and what was wrong with him. I am so happy to say he has grown into quite a self-sufficient young man who now lives in his own apartment, holds down a part-time job and is on a relentless quest to find the love of his life! I believe he is successfully independent today because of the heart and soul my parents poured into him, pushing and fighting for his progress every step of the way. I am also pleased to see Autism is well accepted and wi...

This past week has been a hard one for me. Emotionally, physically, spiritually, mentally...you name it, it was flarin'! With my high-dose Prednisone out of the way and finally taking a lot I feel human on...Fibromyalgia came back! This was a hard step-down and a brutal reminder that manic and frantic sucked but Fibromyalgia is an entirely different kind of monster. I am no longer springing out of bed at 7:30 every morning and racing out the door to walk Yorkie & Porkie. I was bad about doing yoga and that just compounded to make my pain worse. Then I felt so yuck that I don't get anything done that needs to get done...then I get stressed out that nothing is getting done...then I feel worse...what a ridiculous cycle we get on! I have a Fibro-friend that was doing pretty well managing her life. Nowhere near perfect but she had figured out a system, a routine that was allowing her to accomplish enough to feel in control and still manage her overwhelming symptoms. Then came a...

I am a woman that still thinks of herself as a girl. Somehow I wound up at the age of 34 but am not really sure how that happened or where the time has gone. I appreciate the wisdom in my head, the knowledge in my soul, the harmony in my heart that comes with age and experience. But man I miss the vigor and energy and sweet denial of consequences that encompass youth! I am a woman that has learned how different life can be when illness plagues your days, becomes your reality. I am a devout wife to a husband worthy of my devotion. I am married to my best friend, the one that knows me better than anyone in the world. He loves me for who I am, all my faults and flaws and quirks and oddities. He is not scared off by my illnesses, the multiples of them that I have, is actually deeply impressed by my fight, and likes my personality and refusal to conform to the norm. I am a loving daughter that has forgiven my parents for any hurt they unwittingly caused me along the way while trying to live...

To talk or not talk about the elephant in the room, that is the question. Well I am always the one to want to talk! I was a manager on the sales floor of the largest cosmetic department in any retail store in downtown San Francisco for a number of years. With successful management of that job comes a pretty vast knowledge of people skills. Let's just say it is a very hands-on learning experience. When I got sick and quit for good I delved into the world of blogging and Facebook page administration, things I knew very little about. It became very personal yet physically disconnected, emotionally engaging while foreign to any actual proximity to people. You get to know folks in a very strange way on a support site on Facebook. You get to know their heart and soul without verifying any physical credentials. It is an entirely different world! So perhaps that is why I forgot the years of people management skills it took me to hone but I am really quite good at. I have been going abou...

Yesterday was a bit of a rough one. It started out well enough. I woke up ready to hit Monday morning hard...new week, new motivation, new level of pain and fatigue. I was pumped up and ready to overcome whatever obstacle was thrown in my path. So I took care of my daily health and office obligations and then focused myself on writing the business plan for The Fibromyalgia Crusade that has been hanging over my head. The more I dug in the more tired and discouraged I became. Not that I am not capable ...but lets be honest here folks, my true skill does not lie in the back office. I am the talent, the cheerleader, the sales girl. I can write and encourage and dissect reality from a situation and phrase it in a way that brings comfort to others. I can dream and conceive ideas and concepts and package them in a clear and concise way people can understand and gain benefit from. But if you want me to sit down and write a 35 page business plan its gonna take weeks! Months! Way too long... N...

When I was 16-years-old I got into a bad car accident. It was my Junior year of high-school and I had gone off-campus with a friend for lunch. I was dropping her back at school and as I entered the parking lot some moron came careening down one of the aisles at 25 mph and smashed into me. His old muscle car spun my Buick Regal around and left me quite a mess. I had a concussion from my brain hitting my skull, had AWFUL soft tissue pain throughout my body that I was told would require religious exercise to mitigate a lifetime of pain, started developing migraine headaches and pretty much checked out for a while. But the most infuriating part of all was my father. He drilled into me that I could have prevented that accident, that 99% of all accidents were preventable with defensive driving techniques. I fought and argued with him for weeks over this. There was nothing I could have done! This was not my fault! The insurance companies agreed with me and every time the topic came up we wou...

As I have been opening my mouth more and more about Fibromyalgia, The Crusade , awareness and the general passion of my life to anyone and everyone that will listen I keep having positive experiences! Where I used to get glazed over expressions of distracted disinterest I am now finding myself bombarded with questions of genuine curiosity. I don't know if the difference is me or Fibro. No longer mopey and sad faced as I mumble that I suffer from an obscure chronic illness few have hardly heard of or know much about, I can only surmise its because I am now chipper and excited as I delve into my cause. I am a much more interesting and engaging person to talk to as I summarize this strange neurological condition that results in severe and widespread pain, cognitive confusion and horrible insomnia. The cause is unknown but it affects up to 6 million people in the USA alone and is quite debilitating (that's my quick summary, by the way).  A few weeks back I was on the phone with GoD...

As human beings living in today's complex and competitive world we are asked to wear many hats. We are asked to achieve and produce and accomplish constant output and productivity. As healthy normal people this is exhaustive. As Fibromyalgia patients this is what takes us down. I am sitting here feeling a bit bewildered with the sheer variety , cross section of responsibility I carry. I look at the dogs and they need a bath and did not get their walk this morning because I simply did NOT want to get out of bed. I did take them out, don't think I am that terrible, but not their full 30 minutes of exercise, so as puppy mom I must take them to the park. I look at the stack of bills I need to shuffle around and try to pay as the CPA. I look at the carpet that needs vacuuming and furniture that needs dusting and bed that needs to be made as the housewife. I look at the roast that needs to be prepped for the crock-pot and empty refrigerator that needs to be filled and dishes that ne...

Today I step down 5 more milligrams off Prednisone . I am actually beginning to feel human again, and am becoming aware of how deeply exhausted I truly feel from the strokes and drugs and manic and the whole ordeal that took place oh so many months ago. The steroids did a great job of masking that core fatigue and propelled me into a super-productive mode that I have not seen or felt in years! On one hand it was great… I was ON, I was EN FUEGO! Fibromyalgia took leave for a while and I experienced what it was like to be pain-free again, with energy and pep and vigor! If it had not pushed me so far over the edge of normal it would have been like experiencing life pre-Fibromyalgia. But it was too much, so extreme. I was way too pumped up, hyper, racing around in speed-freak ADD mode, starting everything and accomplishing nothing. The tremor shakes were just shy of scary and I had to medicate myself down or I would get frantic headaches and start to stress about more strokes… I existed ...

I wrote a blog months ago about my former relationship with Facebook , Sorority Life & YoVille...how I became this psycho-obsessed lab-rat pushing the same button over and over again at 3am so I could collect the most money possible or compulsively decorating every little room with meticulous attention to detail. I reconnected with a ton of friends from my past; childhood, high school, college and everything in between. It was a very absorbing experience. My husband was barely tolerant and resented my glazed over eyes and obsession with the computer but allowed me to indulge... I was still on Lyrica & Cymbalta and in retrospect suppose I needed that time to zone out and decompress after years of hell battling the CFS/Fibromyalgia dragon. But I became embittered. I was 33 at the time and each day friend after friend would post their fabulous and wonderful news that they were pregnant or just had a baby. I was at the age where if one did not already have kids, they were sure t...

I created The Fibromyalgia Fun House , our support site on Facebook , as a different kind of support than what was out there. There were plenty of clinical, research-based sites. There are a lot of "searching for the cause and cure" types. There are tons where people want to cry and complain and leave their troubles. But what was missing, and why I think the concept organically formed on my personal page long before I actually "created" the fan page itself, was a group where you could get all of that with none of the judgment, dogmatic ideals or criticism we are bombarded with elsewhere in our lives. And then your friends would make you laugh yourself silly and suddenly the world was not such a bad place to exist in anymore! The pain not as all consuming, the fatigue and exhaustion and anger at living so misunderstood not so bad, because you were finally understood! That is the true and pure heart of the page, the spirit of the group and goal of its founder (me) and...

What is this managed Fibromyalgia I keep going on and on about? Notice I am not preaching a "cure", a do this or do that and all-your-aches-and-pains will magically disappear approach to treating Fibromyalgia. The very basis of our awareness campaign, The Fibromyalgia Crusade , states we agree there may indeed be more than 1 cause of Fibro, so 1 cure is certainly not going to fix everyone! But there are many levels of misery that fall under the Fibromyalgia umbrella. There is the I ache and am sore and don't have that much energy and don't sleep that well kind. Wilted Lilac to Mulberry-ish. Then there is the I hurt and am horribly stiff and have a headache and am weak and really can't sleep for very long version. Definitely Mulberry sliding into Amethyst. But by far the worst is the I can barely walk and feel like I am crushing myself simply by standing up and am in so much pain, can't sleep hardly at all, my head is in a vice and I don't remember my...

I have been hard at work over in Leah Land compiling a valuable resource for us Fibromyalgia patients to arm ourselves with when dealing with doctors and modern medicine. In the last two days alone two of my friends have been dismissed by doctors refusing to give them the medical care they are in desperate need of. It is INSANE how this still happens. When I was at the neurologist earlier in the week I told him what I had been up to.. .The Fibromyalgia Crusade ...the blog.. .The Fun House . I told him my mission is to give the power back to the patients to receive proper care and get managed. I suggested Fibromyalgia is still dismissed by many in the medical community. He looked at me in surprise and said, "Not anymore." I told him he would be amazed at the stories I hear and yes indeed it is still doubted! The fact that this is a messy and complex and a highly individual illness sends some doctors over the edge. They don't want to deal with it. They can't fix it so t...

Our best friends from when we lived in San Francisco are getting married this weekend. They are the one couple in our 10 years together where we ALL ACTUALLY REALLY LIKED EACH OTHER! This is quite hard to find. Not me tolerating some bimbo my husbands friend is dating, or he putting up with a nice guy he has nothing in common with my friend is married to. We all genuinely got along, hung out like three times a week and went on vacations together. They are awesome, Godparents to the Yorkie and parents of a wild Boston Terrier the Yorkie is best friends with, grew up with. We moved first and parting ways was hard on all of us. But shortly after we moved to Arizona they moved to Florida and that is where the wedding is taking place. And we are not going. Oh we had every intention but after my two strokes in July, my husband having to use up all his vacation to take paid time off to be with me and then my "retirement" from my job there is just no way we could swing it. Unfortunat...

I decided to break my routine this morning and skipped our invigorating walk, instead taking the puppies to the park. The wild Porkie needed to run out some of her puppy energy I can never walk fast or long enough to exhaust. I remembered a Starbucks gift card sitting in my wallet and threw the laptop in the car, thinking we would sit outside while I worked and we could enjoy the sunshine and warmth. It is finally cool enough to go outside! Seated next to me was a group of women planning a fund-raiser. They struck me as the Junior League ladies-who-lunch type and snippets of their conversation floated my way. Eventually it turned toward their emotionally immature husbands and the troubles of their lives. I eavesdropped with barely concealed rapt attention. It was an opportunity to see into the world of the normals, a land I left so long ago! Oh their problems were so different than ours, and I realized I had forgotten what it was like for every action and reaction to be not coated ...

Oh my dear Fibro-family, I write to you today sitting on a bewildered cloud of progress, passion, excitement and confusion. The Fibromyalgia Crusade is sprouting little purple flowers, bursting out of her bubble, chewing her way out of the cocoon of preparation and ideas and dreams that have been building up in my mind. On September 4th I wrote my first enraptured tirade about linking up, joining together and starting a PATIENT-UNITED awareness campaign. I had no idea how to go about forming this campaign, furthering our cause or spreading awareness, but knew it had to be done. There are still entirely too many Fibromyalgia patients victim to horrific symptoms lacking proper medical treatment to manage their illness and therefore their life. The amount of doubt and blame and sheer unkindness shown by medical professionals, friends and family alike astound me. The everyday struggle a person with Fibromyalgia goes through just to survive, keep their head above water, spirits ...