Thursday, March 31, 2011

The Master Cleanser Day 2 & 3


I hardly sleep at all last night, sort of in that half-asleep half-awake state for 12 hours! What a waste of time, and I feel pretty Amethyst today. I woke-up around 10, took the pups out, drank some juice and took a shower. I am now sipping on tea. I feel pretty stiff and sore. Took a Flexeril. Will definitely be taking Xanax tonight. Gotta run some errands, its amazing how many lemons I am going through! Then I will come home, do some yoga and start preparing that tax nightmare that is my life this week. Between medical bills and The Crusade this is gonna be pretty interesting! 12:30 and I am going to have some more juice.

About 1 and I am slowly but surely feeling a bit better. Doing laundry and packaging up orders for the post office, then I put on some makeup and see if that puffiness is gone!

It is quarter to 2 and I am feeling MUCH better. Full of energy, not much pain and my mood is good.

About 4 o'clock. Just got back from the post office and grocery store. Oh I wanted to eat everything in sight! But I got my lemons, cauliflower (for my soft foods day) and pure apple juice. The Master Cleanser uses laxative tea and a salt water flush to aid in the elimination all the "lemonade" is loosening up. The salt water flush just sucks. You sit there and drink darn near an ocean. The laxative tea does not aid in flushing out the digestive tract, so I am skipping both of those and just took some psyllium husks with the organic apple juice. The "bulking" of the psyllium seems more in line with what this cleanse is about. I have a headache and feel like I am getting sick in my head. Sore throat, achy. Body needs to be stretched. I am tired. But all in all okay. I never did yoga.

5:30. Just had some more juice. Feeling a bit better and I am going to RELAX with for a little while with my husband. I really wanted to eat, then I looked in the mirror and my stomach looks less swollen so I got my resolve back ;)

8 o'clock. Going to drink some juice and take some Xanax so I can sleep tonight! I have no idea how I did this for 12 days or how I worked while on it! I know after a while you get into a "zone" but me oh my, I am already dreaming of oatmeal and mashed cauliflower on Thursday.

11 o'clock. In bed and going to sleep. I am so glad there is only one more day, but feel it getting easier and wish I could go on longer since I am entering the zone. God I must be a sadist!


Last day! Woo hoo! I had a Xanax party last night and slept GREAT! Feel much better today. Slept until 9:30 ish. Walked the pups. Drank juice and made tea. The juice actually filled me up! The top of my stomach is now smaller than the bottom (muffin top) and I have lots of energy. I have a bit of a headache but other than that am getting into the "zone" and not even thinking about food. It is amazing what a pull food has on me, how much my life centers around it, obsessive even.

1:00 had more juice. Not really "hungry" but figured I should. Lots of pain on the right side of my neck, where the Degenerative Disc Disease has compressed my vertebrae. I think that is causing my headache. But its mild at least. A good Chiropractic snap would feel wonderful, although not sure it would be entirely beneficial.

Its a little after 2 and I really don't want to get going on my tax prep! Oh just bite the bullet and do it Leah! I am starting with medical...

Still have not started, its 2:30, and I just drank the psyllium and apple juice. Man I feel full! But I am dying for a Western bacon cheeseburger from Carls Jr. I have no idea why, I have not had one since high school!

I just did "photo op" for the new website and my back hurts so bad from having to contort myself into strange positions in order to minimize the chin action. Just had more juice. Its 5:30. I am VERY grouchy and bitchy. I am so over this and cannot wait to eat tomorrow! But I do have to admit I was not nearly as puffy under the eyes as I was on Sunday. Mission accomplished? LOL

It is 7:30 and I WANT TO EAT! How did I do this for 12 days?

8:30 more juice. 9:30 I started crying and freaking out so I ate some boiled and mashed cauliflower and had some oatmeal at 1:30 am. Going to bed now at 2 and good riddance, glad this is over!

For more information on The Master Cleanser click this link

Wednesday, March 30, 2011

You Are So Much Stronger Than You Think You Are

Dear Fibromyalgia Patients,

I see you every day, from the outside looking in. I see your struggles, dashed-dreams and continual push for normalcy, a life without pain and anguish. I see your sacrifices, your tears, your disappointment and determination. I see your anger at a life that has been robbed. Taken. Snatched away when you least expect it. I see your anger and in all of this I see the spirit of a true warrior. Not by choice but by circumstance, each of you have risen above what seeks to claim your life. Even on your darkest, most hopeless days, your ability to carry on is astounding. Especially then. I see the impossibility many of you face with medical care too archaic to treat your illness so you can get back on the train of the life you had planned. I see surrender. I see fight. I see ups and downs and depression and elation when something is discovered to diminish your pain, improve your sleep, reduce your symptoms. I see you, often blamed and mistreated by family and friends that just don't want to understand. Don't want to make concessions to the limitations your illness places on their life. I see it all.

I feel the pain involved in giving up dreams of parenthood. I see the struggles to feel like a valid parent, keep up with your children, keep up with the expectations of raising them. Struggles to get through the night with a crying baby, and to get through the day with an angry teenager. I see spouses degrade and disrespect you and many relationships fail. I see supportive spouses that induce guilt beyond compare, through no fault of their own. I see the struggle to remain employed and insured, and the battle that ensues once that is no longer viable. I see careers flushed down the toilet once you are too sick to work. I see horrible rounds with disability, denial after denial. Waiting periods for government health care, and the lack of options once it is attained. I see so many barely hanging on by a string financially. Left dependent yet alone. I see the financial ruin life becomes when one just can't work, can't get better, can't improve their situation. My heart bleeds for the babies, the 16 and 18 year old's that enter adulthood already sick. And for those even younger, oh my. I see the pain of a vibrant person of middle age giving-up so much they have worked for, a strange illness coming out of nowhere like a wrecking-ball through a plate glass window. The shattered glass and shared remains of a life no longer livable as it has always been. Oh my dear friends I see it all. For I too am one of you.

But I also see the strongest group of people there are. I see you reach out to each other in times of need. I see compassion and encouragement and the sheer comfort of knowing there are others out there rooting for you. I see strangers form bonds over the computer that are stronger than lifetime friendships. I see a group of people that genuinely care about each other. It is a rare thing in this day and age, in this wild world we live in. So much to do, so much to see, all this technology. I see a group that has slowed down, stepped out of the rat race, and had to re-group, re-strategize how this thing called life is going to go. For plan A is out the window, and plan B is worming into its place. I see each day as an opportunity, another chance to get this beast under control. So to all my friends with Fibromyalgia, I just want to take a moment to say, you are 10 times stronger than you think you are, and you will discover that day by day.

Thanks for joining,

Tuesday, March 29, 2011

The Master Cleanser Day 1


Today I walked the dogs and came home and started The Master Cleanser. I am doing it for 3-days, a short run, for we have company coming this weekend. I am so puffy and swollen and achy and in pain I need a reprieve from food and drugs for a second to clear my head! I am taking my prescriptions but no supplements excepting acidophilus, DHEA and melatonin. So here it goes, the gory tale of me on The Master Cleanser!

Drank juice around 11:30. Made a cup of mint tea mixed with green tea that I am sipping on. It is now quarter to 2 and I am feeling a pull around my face. Like it is attacking the puffiness under my eyes. That is badly needed so I hope so! Mild headache. Tired. No coffee!!!

I am going for round 2 of juice. Just FYI I double the serving recommended in the book. Otherwise I am hungry and want food all the time. OH SPICY! Its about 2 o'clock. No pain pills or muscle relaxers so far... I am peeing a lot.

It's 4 and I drank more juice. My husband is cooking and it smells good and I am paying bills and just entered all our take away food receipts. Food is very tempting! The first day is hard. Still no pain or meds for it. Still feel foggy head but am functioning fine and a bit manic, but maybe that's because I have taxes to prep this week and my VERY dirty house to clean. And no Xanax.

Quarter to six and I finished another cup of mint/green tea and then had some juice. Still minimal pain and my face feels less "sucked on". I keep examining under my eyes in the mirror to see if the puffiness is gone. No makeup on so its hard to tell. I am drinking A LOT of water. Headache gone. Mildly tired but lots of energy at the same time.

Its 7 and I have been hard at work all day and am crashing. Gonna go make some more tea.

Okay 7:45 and I am fading fast. Had more juice, made more tea, and am going to relax for a bit. I had an EXTREMELY productive day but that was more necessity than cleanse related ;)

Well I feel like complete crap. It is 9:45 and I am going to bed, what does that say! But I am detoxing a lot of drugs, including the ones I take as needed every day that I skipped today. All I have to say is I hope tomorrow is better ;)

Stay tuned...

Thanks for joining,

For more information on The Master Cleanser click this link

Monday, March 28, 2011

The Master Cleanser (Repost from November 30, 2010)

I started a 3-day Master Cleanser program today, March 28, 2011 because I am in pain, swollen, puffy, achy and generally feel awful. We have company this weekend so I am keeping it short, and will keep you all updated!

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 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 had enough "juice" to get through his 12 hour work days. There are other components to the cleanse as well. The author advocates a "salt water flush" daily and laxative tea nightly. The point is to get all the crap (pun intended) that is stuck inside you out of your system and allow your organs to cleanse, rest, rejuvenate and repair. I have taken so many prescriptions during my battle with Chronic Fatigue Syndrome and Fibromyalgia and I wanted to eliminate the residuals from my system. I did not take any of my regular supplements during the cleanse but of course continued my prescription medications. I had a strange pain journey while on this cleanse. An area of particular pain would magnify and then go away completely. This happened with many different spots on my body at different times. My upper back, shoulder, lower back, right arm, hips. It was interesting and strange but I sure did enjoy less pain! My husband caved first, lasting 5 days. Then I had to sit and watch him stuff a burrito down his throat while I drank "juice" and salt water. It sucked. Two days later I was boiling cauliflower and mashing it up, re-introducing food to my digestive system. I have "abstained" from food plenty of times due to multiple Pancreatitis attacks and am quite familiar with the practice of breaking a "fast" in a slow and gentle way so I skipped the orange juice day the author recommends (too much blood sugar crashing for me).

The second time I did it solo, which meant I had to cook breakfast, lunch and dinner for my husband while completely abstaining from food. I figured it would be torture yet discovered I had NO problem with it! I actually bought the book and read the entire thing, not just gleaning my information from the internet this time, and made a few modifications. The salt water flush was awful and I did not feel it benefited me so I eliminated it. I also doubled the amount of "juice" I drank and found my hunger and cravings were much more satiated. I believe I was consuming a calorie level that took me out of "starvation" mode and that is why I felt much better. I cooked wonderful gorgeous delicious meals for my husband with no problem! I sat down at the dinner table with him to chat while he ate and I drank. I also drank mint tea almost constantly to "purify" my system. And some pretty wonderful stuff happened this time! Within a few days of starting the cleanse Fibromyalgia pain went away almost completely. The stiffness and soreness that I live with daily disappeared. I also lost all puffiness, especially under my eyes. I am particularly sensitive about my under-eye puffiness, feeling it ages me terribly. My skin took on a healthy glow and my clothes became looser and I could do yoga with increased flexibility and ease. I felt pretty wonderful! But around the 11th day (I was shooting for 14) I developed a reaction that caused me concern. I was not sure if it was my body detoxing all the candida I have dealt with for years and years or if it was from all the maple syrup I had been consuming. Not having a doctor or holistic health practitioner to confer with I stopped the cleanse two days short of my goal. But 12 days is my longest fast to date and I was pretty darn proud of myself!

Now I did lose weight while on this "cleanse" but that is the absolutely wrong reason to do it! It is not a diet. I quickly gained it back once I begin eating again. It did give me a chance to jump-start or re-set my system and if I stuck to consuming healthy, unprocessed, unrefined foods upon completion I maintained many of the benefits of the cleanse. My social life was eliminated while on this cleanse. Working was hard enough but I needed constant access to a bathroom and it was just too hard to be in a restaurant or at a friends house with all sorts of "food" focused activities going on. I anticipate another round with The Master Cleanser after I am done with Prednisone. I will clear it with my Neurologist, per my husband's insistence, but am looking forward to flushing my system of all the residual affects of this stroke-preventing drug as well as all the narcotics and radiation from my hospital stay. All in all I am a fan, but would never recommend it to anyone who is extremely ill. I wanted to do it for years before I actually broke down and did it but was too sick, still suffering from all the viral issues and infections and such. The author claims it will cure what ales ya', but it just did not feel right to me. However, once I was able to get so many of the infections under control and my immune system built up I believe The Master Cleanser is one of many important components in navigating my way to "managed".

Thanks for joining,

For more information on The Master Cleanser click this link

Sunday, March 27, 2011

Channeling My Inner Scarlett (Re-post from August 28, 2010)

I grew up on the movie Gone With The Wind... A tale of a dark and troubled time in our countries history, a necessary time. This telling of America's ugly past is puff-pastry layered over with the icing of one spit-fire of a heroin and her determination not to let life get her down. Fiddle-de-de! So when I found out Gone With The Wind was masterfully updated and available on blu-ray I was elated! My husband, with his newly passioned craft for acting, needs to familiarize himself with the classics and I saw this as an awesome opportunity to experience Tera as she had never been seen before; bright, vivid, crisp & clear. So we sat down last weekend to watch the tale unfold in all its glory. I was enraptured, romanced, taken back to another time...not only by what was unfolding on the rich and descriptively detailed screen in front of me but also by the memories of the impact this film had on my youth...and my husband hated it!

"This is racist!" he proclaimed. "No shit!" I said. "What a spoiled brat, I don't get her motivation. Am I supposed to feel sorry for her or something?" he said. I just smiled. This was the man that hated "On The Road", not understanding or identifying with the self-indulgent beatnik generation walking away from their responsibilities to simply live and experience the passions of being. He has seen too much pain in his life, worked too damn hard to keep our heads above water, stuffed his wants and dreams and desires deep down to forge ahead into pure survival. He feels no compassion for the dizzy, spoiled and over-privileged that dominate our society. Those originating in the 1960's counter-culture and continuing on through today's coddled youth. I just laughed and told him he was missing the point...a woman that would not be beat down by the harshness of a world she was ill-prepared to live in, who did what had to be done to keep herself and those she loved going. Although she compromised morals, ethics, integrity and honor many times over, she survived. No, she thrived!

"I'm not going to think about this today. I will think about it tomorrow. After all, tomorrow is another day!" Scarlett O'Hara's famed mantra is well suited to the Fibromyalgia patient. How many times have we all crumpled down into a completely frustrated lump of exhaustion, having finally given into the pain and fatigue pulling our bodies and minds down the rabbit hole of despair? Nothing that so desperately needed to be accomplished had been done. Laundry, bills, dishes, kids, all the necessities of life that keep piling up, causing more anguish and sorrow simply by still needing our attention. The guilt if one happens to have others in their life that are picking up the slack, the fear if one does not. I remember when I returned to work after 7 months on disability, everyone kept commenting to me that my house must be so clean and organized (remembering the type-A go-getter of my pre-Fibromyalgia self) and I would just nod my head from side to side and say, "Actually, I sat and watched the dust and laundry and dishes, everything pile up around me, too sick to do anything about it". They would give me the yeah right look, hardly believing or imagining life on those terms.

Living in the now is one of the hardest qualities of life to master for a well person, but a sick one? Me-oh-my! But let's try for some raw honesty here for a second. There is always going to be more to get done than time, energy or motivation to do it. There are always going to be expectations we simply cannot meet, self-imposed or otherwise. There are always going to be totally-mundane but seemingly-crucial tasks at hand. So we can beat ourselves up with failure, disappointment and frustration or we can decide to look at those few things that do get done as amazing, with pride! If the bed gets made, enjoy the way it looks for that 1 day, for it may not happen again for a while. If the dishes get washed, go out of your way to meander through the kitchen and notice how clean and pretty it looks. It could be weeks until you see it that way again! If the laundry gets sorted, washed, dried, folded and put away all in the same day, go buy yourself a Gold Star and scream from the rooftops, because you sure as hell deserve it! It is up to us to change our mind-set away from one of disappointment and failure, expecting the performance of our pre-Fibromyalgia selves, and toward pride and newly-adopted realistic expectation. What is important in life are the relationships we have, those we love and surround ourselves with, by choice or circumstance. Those people are the easiest to lash-out the internal misery we reside in every minute of every day on. But they are where the limited and delicate energy a Fibromyalgia patient has should invest their efforts. Forget about the bed, go get take-out, read your kid a book and kiss your significant other/best friend/biggest supporter, telling them you love them and hopefully worming out a calf-massage in the process. And don’t forget our sister Scarlett, what an inspiration she can be to us all...for she truly had her priorities right. After all, tomorrow is another day!

Saturday, March 26, 2011

Fight Or Surrender

Today I am hung over off of 2 glasses of wine. 2 glasses of wine used to be my appetizer! I am feeling blah and anxious, nauseous and emotionally detached. Too much anxiety to sleep. Too much discomfort to stay awake. And as I sit here writing this I wonder if there ever comes a point of acceptance. Of bliss. Of absolute peace and release of what could have been or what should have been and true acceptance of what is.  Can one absolutely live a life of complete surrender to a life of chronic illness? Can one meditate or medicate of yogasize our therapize our way there? Or are we destined to roam around as tense little bundles anticipating each increase in pain, flash of exhaustion, impending wall we will undoubtedly crash into? Does every yes to an invitation warrant hours of pensive contemplation, will I feel good that day, can I get my basic obligations met so I can go have some fun? Will my body allow me a break from this pain and exhaustion, ever? Do I spend the rest of my life searching for and striving to practice what will always allude me? Do I keep fighting with everything I have, knowing that the pain and frustration of struggle diminish my ability to enjoy life on top of my chronic illness?

Each person must suss out this answer for themselves. We are all different in so many ways. So many different personalities, experiences, values and beliefs. Circumstances and upbringings and stages of life and obligation. There is no one pat answer for everybody. I look at where I was headed before July 2010, reading back through this blog. Had I ever decided to publicize myself, open up and share my writings with others that suffer from the same aliments that I do, I would have been a completely different person than the girl who had strokes. The girl that you got. Would I have found the same compassion in myself, understanding, kin-ship with you all? Would I have been more self-righteous, know-it-all, this worked for me so it will work for you kind of mentality? Would I have been too far into the "recovery" process to remember the acute pain and misery of what it is really like to live day in and day out with Fibromyalgia?

I live a life of truth, to the best of my ability. I keep it real here. I don't soften my observations or encounters or frustrations with a pretty coat of sugar. This is Fibromyalgia and it is real and it hurts and it sucks. While on a gas break during a road-trip to a friend's wedding from college a few years back, my husband's best friend asked me why I didn't just go do something I was explaining to him my husband did not want me to do. I told him that although we don't agree, if I don't have honesty with my husband, then what do I have? His swingin' single bachelor mentality took a pause, and he agreed with me. So that is why, when life is not a bed of roses, when I am hurt and confused and angry and depressed and sad, you know it. For to lie here would defeat the purpose. What really, would be the point? So as my husband watches that Bizarre Foods guy and yells out fast-facts so I can hear them  in the other room where I am writing: "Budapest used to be 2 cities, Buda and Pest. The term gypsie comes from Egypt. E-g-y-p-t G-y-p-s-i-e" he spells out, I find my first smile of the day. I think for me it is a careful balance of both. Some days I fight, and others I surrender.

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Friday, March 25, 2011

My Bladder

My bladder has tried a couple times in my life to control me, and both times I have shown it who is boss! The first time was when I was oh-so-sick with CFS. I would sleep 10 hours a night and wake up exhausted. And during those 10 hours I would get up to pee 4-6 times. I think I was reading either From Fatigued To Fantastic or You On A Diet by Dr. Oz. In the section on sleep the doctor that wrote it stressed how important uninterrupted sleep was. He stated getting up multiple times in the night to go to the bathroom was indulging brain signals that were prematurely going off as a matter of habit. The amount of urine actually produced overnight was not substantial enough to cause any problems if it was held until morning. It was the practice of indulging our brain signals that caused so many trips to the bathroom, disrupting that oh-so-precious sleep cycle. He suggested when one wakes up and feels the need to pee in the middle of the night, you must ignore it, not indulge it, reassure yourself you will not wet the bed, and go back to sleep. So I tried it. And amazingly enough, after plenty of opportunities to squelch my well indulged brain signals, I made it through the night without waking up ONCE to use the bathroom. I now sleep my solid 9-10 hours a night and when I wake up in the morning, boy do I have to go, but my sleep is deep and restorative, full of wild dreams and uninterrupted. Score 1.

A few years later I started developing a DAYTIME bladder problem. I would feel the urge to use the restroom, make my way there, and as I was laying out the seat protectors and pulling down my pants I would develop such an overwhelming urge to pee that I would nearly pee my pants with the toilet 1 foot away from me! I would literally jump up and down, do a little jig, a River Dance or two, as I was unzipping my pants to distract myself, to no avail. It became quite a problem, even at home. The time it would take to pull my pants down was enough to, once again, nearly cause me to pee my pants! I was horrified. Embarrassed. This was ridiculous! Here I was a 33 year old woman that could not control my bladder enough to make it to the restroom like an adult! So I talked to my doctor about it. She said that I was on some medications that shared this side effect, but it was a mind over matter issue. So when I felt that overwhelming urge that I was going to open the floodgates at the wrong time I had to completely ignore the impulse. I had to walk away from the bathroom, and once the urge had passed, then I could go use the restroom. What do we call it, Tough Love? It took a few weeks but sure enough I was back in control of my pesky bladder and no longer ran the risk of blowing a gasket at the wrong place, wrong time. Score 2.

I am very glad both times I have managed to overcome my bladder issues with behavior modification. I am not going to wrap this blog up with some correlation between these experiences and how it has improved my Fibro experience, shaped my expectations of life or grown me as a person. They are what they are, simply bladder issues. But these are the kind of things people don't really talk about so I figured I would do what I do best. Open up the deepest, craziest, silliest parts of me with pure transparency and share them with you, my readers, in the hopes that if you have shared similar struggles, you will take comfort in knowing that you are not alone and there is a solution. And if not, hopefully you at least giggled a little.

Thanks for joining,

Thursday, March 24, 2011

I Am Getting My Fight Back

Either that, or this terrible impatience and frustration and I kinda have to admit, pure anger pouring out of me is the premonition of a flare. But I have to say all I do is look around at the wreckage that is my life and get really pissed off. The dust bunnies are having babies, getting my carpet cleaned has only made it dirtier, not that I ever vacuum. The laundry needs to be done, dishwasher emptied and re-loaded, dogs need a bath and I need blonde roots on my head and the dirt cleaned out from under my fingernails. And don't get me started on the condition of the bottom of my feet! My bills need to be paid and taxes prepped. Let's not even mention The Crusade, the new website, our next strategy to push our fight for awareness forward. People in general annoy me. I am so sick of advice! I know what I need to do, I am just not doing it. I think all it does is make the advice-giver feel good, useful, needed. I try to be nice but inside I am impatient and seething. It is all I can do to not snap or even yell. It is not my job to make you feel good about yourself! But these are just people that are trying to help me! And physically I feel great! Lilac pain, walked my doggies, did my yoga. I am trying so hard to remind myself that the aftermath of my strokes last summer could have been so much worse, but that does little to comfort me or sooth the raging monster inside. 

I am so sick and tired of EVERYTHING being a struggle! I recall fondly, all reality aside, a carefree youth of playfulness and passion. Of not worrying about tomorrow or caring much about today except for finding the fun. The next thing to do. Of hanging out, no plans or destination in mind. Just being. Of keeping my front door unlocked and yelling Come in to every knock, knowing it is another friend coming to play, have some fun. Now I get annoyed if someone calls and wants to spontaneously come over. They upset my order, my balance of what I thought my day would be, and just suck from me the energy I need to meet my basic obligations. I am an empty well with nothing to give, and it is beginning to infuriate me! I want to learn Spanish, look fabulous, take Salsa lessons with my husband. I want friends to play with, I want my social life back! I want to go on vacation! I don't want every ping and pang I feel to send me into a PTSD tailspin of fear that something else is going to happen to me. Fibromyalgia is going to overtake me again. Pancreatitis is going to strike. When I get a headache I don't just get a headache, I get a fat dose of paranoia that I am going to stroke again and I constantly live on the verge of fear that I am going to die. For there are NO guarantees in life and I have felt this first hand too many times.

So all of that being is up to me to fix this. When there is a problem in life you can either change the problem or change your attitude about the problem. So many of my problems are not in my control. So the attitude needs adjusting. That is in my control. I can channel this force of frustration into productivity and start fixing these little nuisances in life that are overtaking my happiness, gratitude, grace and generosity. I can take a deep breath and stop expecting Superwoman to come back. I just don't think she ever will. I can be kind to myself and take joy in cleaning my home bits at a time, as my body will allow, making it beautiful for my family. I can revel in bath time with the puppies, for they will not be here forever. I can be grateful that even though it is by the skin of our teeth, the bills do get paid eventually. I can live a life of intention and purpose, not chaos as though every event has swept me out to sea. I can put my faith in front of my fear and persevere. And as my favorite lyricist Eminem says in his anthem of opportunity, Success is my only option, failure is not...feet fail me not cuz maybe the only opportunity that I got.

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Wednesday, March 23, 2011

Bubble Gum Life (Re-post from 7/4/10)

It all started when I first saw The Girls Next Door. I was introduced to a life of fluffy-white-cloud bubble-gum-pink rainbows-and-unicorns. It was a life of luxury and mindless care. It was about flaunting beauty, fun, youth and sex. There was no want for money, but its exploitation was mildly minimized as well. Anything these girls desired was readily available with the butterfly flutter of a kohl rimmed eyelash or the "oops!" of an itty-bitty-bikini spill. But a genuine kindness of heart was represented frequently and abundantly as well. I watched three busty-bleached-blonde babes frolic and flounce amidst the backdrop of old Hollywood and soft-core porn. Initially I was not sure if they offended my feminine sensibilities or embraced them. They would literally bounce around up-and-down in a circle topless, squealing and giggling and holding hands. But eventually I  became enraptured...fell in love! When I was terribly ill and disabled I began to anticipate each episode as some sort of blissful release. Release from the pain that was eternally shock-waving through my body. Release from mounting money problems and mounds of medical bills. A break from a union of hopefulness gone softly awry. Each day was a struggle just to exist in my real world, but the message Holly, Bridget and Kendra were selling was not lost on me. Life is for the taking, and for those who dare to step up and take it. The young, the beautiful, the passionate, those that expect risk and opportunity to come at them hand in hand. They also reminded me to get up off my ass and put some makeup on and fix myself up every day. Its as if there was some secret message shrouded yet embedded like the monthly caricature, reminding me that when you look good it is much easier to feel good.

Then I started "Keeping Up With The Kardashians" on a regular basis and was given a glimpse into celebutante sibling-hood unlike any I had ever even known to wish for. I saw live-or-die friendships blended among the family drama and ludicrous antics. I saw a slice of nuclear relationship that was foreign to me, and I felt all warm and fuzzy inside as Kim would guide Kourtney through some over-indulged spoiled rich-girl trauma or another. I watched the makeup/breakup dynamic the 3 sisters shared, and the meddling in each others lives, the closeness I saw in a family steeped in unconditional love.

And I realized I wanted nothing to do with sad, painful, heartbreaking or devastating anymore in my life. I had had enough. I wanted only the happy and light of heart. I would attract and give off only positive energy, good energy. I have experienced physical pain beyond what most ever will know. Pain that caused me immeasurable emotional anguish and cost me 5 of my prime years, my child-bearing years, my career-building years. Years 28 to 33. I had given up enough already, and whatever I was left with at the end of the hurricane-tornado-earthquake of Fibromyalgia, I was going to hold onto with all my might and race to the other end of the rainbow with. So take your emotionally traumatic movies and books and stories. Take those stirring and haunting and moving tales of loss and near-redemption. Take the victims and broken-hearts and tragic glimpses into the other side. Take them all. I don't want them. I have been there, and I am never going back.

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Tuesday, March 22, 2011

Why Don't Any Celebrities Have Fibromyalgia?

I had a strange and riveting dream the other night. When I woke from it I was confused and unsure what it meant. Maybe I had been watching Project Runway recently or something. But anyway, I was at a small little store, very posh and high end, with Heidi Klum and her business manager. Ms. Klum was launching a skincare or cosmetic line and they were trying to recruit me for a sales manager position at counter. I was torn, for this obviously represented a fabulous opportunity, while at the same time the panic and dread of going back into cosmetics was overwhelming. I have laid down that part of my life and moved on to something new. This blog, this cause, this. So I explained I no longer was a makeup artist or retail executive, I created an awareness campaign for Fibromyalgia, suffered from the debilitating condition myself, and was pursuing a career as a writer. Heidi turned to look right at me. In her clipped German accent she said, "You have Fibromyalgia? Don't worry dear, we will get you over that real quick." When I woke up I reviewed the dream in vivid detail, trying to make heads or tails of it. Dreaming is your unconscious filtering through your conscious, in my opinion. So what did it mean? Where had it come from? What was I to glean from this? 

And then I got to wondering why so many people have Fibromyalgia, yet we never hear of celebrities having it. Part of me wondered if it was simply access. A doctor did not tell them nothing was wrong with them when the initial round of tests came back clean. Or if so, they consulted a different doctor. They did not just settle with being told they were "just depressed" and dismissed with a prescription for anti-depressants as far too many of us are. There were more tests taken, they dug a little deeper, specialists were consulted. Or perhaps it's the wealthy who can afford functional medicine*, which is what might be needed to get control of a chronic non-terminal pain condition. They struggle for a short period and then recover enough to resume somewhat normal living. So I did a little research. The only three I could come up with that actually used the word "Fibromyalgia" were the singer Sinead O'Connor, the soap star Susan Flannery and a singer from the '60's named Rosie Hamlin I was not sure I had never heard of. Everyone else used some variation of the term "chronic pain condition". George Clooney had spinal fluid coming out of his nose at one point, Marcia Cross suffers from migraines, Paula Abdul was rumored but again that "chronic pain condition", and an addiction to prescription meds, was all I could really find out about her. Oh and a plethora of pro-football players suffer from some pain ailment or another. To that I wanted to say no shit Sherlock

Then I came across a group that wanted to just pick a celebrity spokesperson to get the word out. That is not how it works, I thought to myself. The celebrity has to have the ailment to be a spokesperson for it. You don't just pick someone out of the clear blue because you feel like it and petition them to take up our cause! Do you? Maybe you do. Susan G. Koman's sister wasn't a breast cancer survivor herself, was she? So what to do, what to do to get the word out... A celebrity spokesperson would be wonderful publicity, but there just don't seem to be many that have it. Or do they too keep quiet about it because it is still so disrespected, medically and socially? Would it screw up their professional or personal lives like it does ours?

Well I can tell you from my end over here I am doing as much as I can. And I see a whole lot of other people proudly supporting the cause with their Fibromyalgia Crusade bands and tee shirts. People are giving out our postcard left and right. I even have some friends who have their doctors giving them out! People that were silent or embarrassed or insecure about having Fibromyalgia are now speaking up, demanding collaboration and results from their doctor, forgetting about the people that don't offer compassion and support. That is HUGE! I am upgrading our website, still gonna get myself on youtube one of these days and yes, we are going to harass the government with a letter campaign as soon as I can get to it. So I guess we are doing the best we can. As the Fun House reached 2,000 strong and this blog nears its 50,000th hit, we are doing a bit more than the best we can, we are kicking some Fibro booty!

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*Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for serious chronic disease. It is a science-based field of health care. Click this link for more information.

Monday, March 21, 2011

Manic Monday

Every Monday morning I start out with a new resolve. Actually, it is Sunday night when I begin the fantasy and anticipate the perfect me that is going to emerge from my bed the next day. I am gonna walk the dogs every morning this week, come home and do yoga, check in with the Fun House and pretty myself up for the day everyday. I am going to blog inspiring and rebel-rousing essays and push this march towards Fibromyalgia awareness forward at the speed of light. I will clean a little bit of my house each day, run my errands and make it to the post office, leisurely arriving home to cook made-from-scratch wholesome dinners every night. I am going to be calm and peaceful and organized and the IRS is going to forget I exist. My bills will be paid on time each month and my house will remain neat and tidy at all times. I am going to come up with brilliant and creative ways to draw attention to our cause, the "business" part if all of it will just get itself done and everything will be accomplished by 6pm when my husband comes home from work and the gym. After we eat dinner I do the dishes and we settle in for a bit to watch some TV before bed. I am not distracted or irritable or, well, human. Oh just writing it out makes me tired...

Because that is not what happens. EVER. I frequently oversleep, wake up with a headache, bad mood or flare. I may walk the dogs a few days a week but the getting pretty part happens only if I have somewhere to be. An appointment or plans or such. I usually fly by the seat of my pants, racing out the door at 4:45 to get to the post office before they close at 5. Dinner has not been made, my house has not been cleaned and my dear husband is out of clean underwear but says nothing so he does not add to my self-induced stress and anxiety. I have had Fibromyalgia for 7 years now and I still hold the above paragraph as reasonable expectations! My what to strive for in life. I am under the grand illusion that because I no longer "go to work" every day I can blow both Donna Reed and Martha Stewart out of the water with my perfect housewife-ness. I seem to have forgotten that the reason I no longer get up to go to work every day is because I am too sick to do so.

7 years. One would think I would have figured it out by now. Pacing. Forgiving myself. Not just lowering but completely re-defining my expectations of productivity. Scheduling some "down" time. Putting my health management somewhere near the top of my priority list. Sometimes I wonder if I am so hard on myself so as to beat anyone else to the punch? I was raised to persevere, push through the stress and struggles. Ignore my biological signs and symptoms like clanging cymbals pouring out of me to stop hurting myself! My many years in retail were no illusion. I was good at what I did and came to believe there was a $ sign in place of my face as far as my superiors were concerned. I ceased to be a human being and became a commodity. I have retired from that 3-ring-circus, but I still treat myself this way. Become disappointed when my unrealistic expectations are not met and chastise myself for not being more on the ball. Really folks, I think I need a lot more fun in my life, for this is getting ridiculous.

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Sunday, March 20, 2011

Sorry To Bring This To Print (Re-print from June 10, 2010)

I am as sensitive about polite conversation in public as the next person, which is why when feminine hygiene commercials come on at dinner time I am appropriately offended, but this topic is a major one for females with Fibromyalgia. Please only read the next paragraph if information about the female monthly cycle is what you are looking for. Otherwise, it will surely alarm you. Feel free to pick up at paragraph 2 if you skip it, it gets normal (as normal as I can get) again then.

Why do I feel like my entire world is re-set every month when I get my period? Sleep and wake times go haywire, food and pain medicine consumption increase. My mood gets snappy and irritable and crabby and then once it finally comes, oh my! I think my entire life-force is draining out of me as the cramps radiate out from my belly to my lower back, thighs, legs, upper back, arms and torso, so pretty much everywhere except my head. The massive headache takes that up. And if I do indeed have to work, the amount of pain medication I must take makes me stupid and forgetful and that is just not good at work! Thankfully I don't have to work today. Just a housewife day at home. I feel that no matter how much progress I make during the rest of the month, it is all lost once this damn hormone cycle hits. My doctor says this is normal and happens to all her female Fibromyalgia patients but I am freakin' sick of this! Ages ago I read an article in one of those women's magazines like Vogue or Elle about a woman who credits her unbearable PMS (more in line with PMDD in my opinion) with keeping her on track in life. Her mood gets so sour and she challenges and questions all the choices she has made in life that have put her where she is. After the storm clears, she feels fresher and clearer and more capable to move in the direction she really wants to go in life. Well I say good for flippin' her! Glad she can see the positive. All I know is my entire existence is leveled for about 1 week a month and that sucks.

On another note, we have decided it is time to increase our family size, and I have barely begun researching breeders in Arizona, but a little Yorkie puppy is on her way to our house! I find myself without any work all week, and I just want it to get to the weekend. I start to get a little off balance when there is not enough demanded of me. It is important to keep balance or objectivity flies out the door. I am finding I am so enraptured in writing, blogging, etc. that I could do it for 20 hours a day! That is not balance.

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Saturday, March 19, 2011

A Victor Over The Darkness

Becoming part of a community of fellow Fibrates has taught me SO much. It has validated a multitude of oddities I thought were happening to just me. It has given me a group of friends that know what living with Fibromyalgia is really like. Their strength and compassion making it easier to put unsupportive family and friends in their proper place, and not take their apathy so personally. It has opened my eyes to how severely this terrible illness will tear your life apart and how badly we need to shout out awareness, until everyone has heard and accepts Fibromyalgia as the serious and life-wrecking illness it is. There is a theme I see reoccurring time and time again. I myself have been down this path on more than a few occasions. It is the overwhelming and perfectly-rationalized wish to no longer exist. The pain is too much, the fatigue too consuming, the fight too hard. So we settle into that little place in our brains that tells us it makes far more sense to end the madness and discontinue living than to keep suffering.

I have watched perfectly rational and reasonable people become so distraught over their situation, the desire to end the lunacy becomes far stronger than our biological imperative to survive. I have seen some of the strongest people I know crumble into a million little pieces, weeping and waiting to be swept away. I myself have had moments where I truly believed anything would be better than a life with this illness, the restrictions it places on your life, the stronghold it wraps around your heart and soul. Fibromyalgia is not a terminal illness but a 7 year study determined the suicide rates among Fibro patients is 4.4% compared to the average 1.4% of non-Fibrates*.

But I have also watched every single one of these people work through it and get to the other side. The desire for life returns, the strength to keep fighting for survival resumes. And as I look at the next one spiral down the pit of darkness I pray they too can find that little pin-prick of light worth running towards with all their might. Life with Fibromyalgia is still worth living, but un-managed pain and insomnia, doubting and dismissive doctors, a society that tells us we are crazy, lazy, wimpy or junkies, may make the struggle to "managed" seem insurmountable. Please listen to my words and understand the severity with which they delivered. Seeking professional help is NOT OPTIONAL when one begins to feel those dark thoughts taking over. Psychiatrists, therapists, clergy, family and friends, your Fibro support group, they are all there to boost you up and carry you out of the bleakness and into the light. Rely on them, depend on them, and for heavens sakes USE THEM. It is not a sign of weakness to seek help when things are just not right in your head. It is actually a sign of strenght and responsiblility and a refusal to let the Fibro monster win.

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Friday, March 18, 2011

Society On The Verge

As I have become close with so many fellow-fibrates, I am learning a lot about the way we think, act and react to life and its multitude of challenges. I have said it once and will say it again, I have yet to meet a stronger group of people anywhere! But as I maintain my relationships with my family and friends, the non-fibrates in my life, I feel I am becoming aware of a vicious theme. It has been there all along, and in fact I was a willing participant in its evil clutches before I became ill. I cannot speak for any other country, for I have only ever lived in the USA, but we are working ourselves to death! If pure physical exhaustion does not take you down, the emotional and mental stress of being over-worked and over-stressed and under-appreciated and under-valued will! The commonplace that has become the middle class working environment is starting to resemble a toothpaste tube. They will squeeze and squeeze and squeeze until there is nothing left of you. And once your productivity suffers because of it, out you go! Companies are downsizing and unemployment is at a dangerous high. Yet those that are lucky enough to have kept their jobs are doing the work of 2 people (at least) and burning out fast! We enjoy lifestyles we cannot afford, drive cars that cost far more than our budgets allow, saw what happened when we started buying houses that we could not truly pay for and the retirement age is 15 years older than it was when I was a kid!

A thought crossed my mind. Are we the sensitive ones that could not keep up with unrealistic demands on our lives and constant and pervasive stress? Are we actually a normal reaction to a society gone awry? I for one can say going into a salaried position with no overtime "allowed" but impossible to do my job without was the first step of many down the slope to developing my illness. When I go out in the world I see angry, bitter people ready to snap at the slightest thumb of their string. They yell at their kids, salespeople, gasoline attendants, anyone really, upon the slightest provocation. In our effort to achieve and accumulate all these things, status items that show the neighbors and strangers walking down the street we are worthy, we are trading in our humanity. And ultimately our happiness. For if a Fibrate knows anything, we know happiness does not lie in the possession of material objects.

We are a very young country descended from immigrants. People from every reach of the globe who risked everything and worked tirelessly to the bone to make a better life for themselves and their future generations to come. Those expectations die hard! 200+ years later we are still doing it, but our basic needs are met! Most have food, clothing, shelter and stability. Grocery stores, shopping malls. Washing machines and refrigerators. What the generations before us worked so hard for has been achieved! Most enjoy a pretty darn good quality of life in the USA, and I am not only talking about the affluent and upper-middle-class. But it is not enough, never enough. So we keep pushing, reaching, grabbing at that next thing that will fill our empty hearts, all the while missing the point completely. Maybe CFS and FM are much more of an environmental by-product than we give them credit for. Or maybe it is just that living in pure flight or fight mode day in and day out for years took its toll and took us down, sooner than later, because of the perfect mixture of genetics, expectation, environment and inherited behaviors. Just some food for thought.

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Thursday, March 17, 2011

Living On The Edge

I am a rebel at heart. I hate being told what to do. More than that, I hate being told what not to do. I have been known to say the quickest way to get something out of me is to tell me I can't. Nothing fuels my fire faster than others doubting me. Perhaps that is why when someone sends me a chain email with a dire threat at the end that I must send this to 12 of my closest friends immediately or I will die the next day, I will most certainly not pass it on. And if someone posts a status on Facebook that says "If you really love Jesus you will re-post this as your status", the last thing I will do is post it as my status, my love for Jesus having nothing to do with it and disdain for being told what to do having everything to do with it. My husband and I are not the types to play it "safe". We have made a handful of risky yet calculated decisions in our lives and despite the challenges, have never regretted a single one.

We set the tone about 7 months after we started dating, 6 of them long-distance. He still lived in our college town and I had moved back to Los Angeles after graduation. It made sense to wait until spring for him to move to L.A. and us to move in together. He was working retail, did not want to leave them high and dry for the holiday season and we had not been together all that long. Yet my last trip to visit him was right after Halloween and he moved in with me the day before Thanksgiving. Yeah, that one turned out alright ;) About 6 months after we were married I had my first serious bout with depression. The I-can't-go-to-work-because-all-I-do-is-cry kind and I decided we had to move to San Francisco. L.A. was causing my depression because I did not want to live there (silly, silly girl). Everyone laughed at us. It was so expensive. And it was, but the second he got that acceptance letter to university we were on it! It made no sense whatsoever. I had just started a new career in cosmetics and paying the exorbitant rent and even more for the parking space (ha ha) was a stupid financial decision. But I figured we go now or after he graduates, anticipating we would be in our late 20's by then and starting to head down the "having babies" path of life. So at 25 we moved to the city by the bay and spent the next 6 years experiencing some of the best times of our lives.

Oh am I glad we did it then because 2 weeks after he graduated I got sick and life has been one big bag of mixed nuts since! But when I was finally diagnosed with CFS and FM, told there was not much for treatment and certainly no cure, I refused to accept it. I could barely leave my house and was pissed! He had worked his way through, full-time at both school and work, so we could have a better life and I wanted that better life! So I researched and bit the bullet and sought out treatment at The Fibro & Fatigue Center. I got a lot of flack for that one! Its not scientifically proven. You are wasting your money. I will be honest here, it went on a credit card. But there is no price you can put on health and eventually my life became more of a focus than my illness and once again, I was glad to have taken the risk. All in all taking risks have done us well, stretched us and grown us as individuals and a couple. I mean hay, after I had my strokes and retired from my 10-year cosmetics career to focus solely on Fibro Awareness, that was a BIG risk. But little by little, day by day, we are creating a movement that will hopefully change living with this illness not only for us but for future generations to come. If that is not worth the risk than I don't know what is.

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Wednesday, March 16, 2011

Que Sera Sera

I took 3 days off this past weekend. First 3 days I have taken off since August. I burnt out, had rammed my head into too many walls and had enough shit flung at me that I felt like a monkey in a zoo. But it took every ounce of everything I had not to sneak a peek, here and there. I am computer addicted! Facebook addicted! Fun House addicted! On Friday I actually had one of the more productive days I have had in a while where my personal life is concerned. Cleared a nice pile of paperwork off my desk. But I was still so raw from the last few depressing weeks and the very low low Thursday became, that I did not dare venture into Leah Tyler Fibro Blogger land. So I met my addiction half-way and took a gander at that other Facebook account. The one I never go to. The one full of the people I grew up with. The one under my married name that is comprised of high-school friends and college comrades and people from my career years in San Francisco. I scanned pages, wrote messages, attacked walls. I looked at pictures of myself in high-school and wondered why my hair was so big? I saw baby pictures, man 'o man did I see baby pictures! I saw posts regarding careers and vacations and buying houses and traveling to exotic locales for work. One friend had surgery and was anxious to get back to the gym the following week. What? A few were still up to banter with but I felt as though I was in a foreign land. Everyone was still human, but we were not on the same wave-length or speaking the same language. And I got a pang in my heart for my Fun House. 

For I realized I know my Fibro friends better, and they know me far better, than most on that page, close family and the few friends I keep up with excluded. I had nothing in common with them. My best friends from high-school posting about a girl trip we could all take together. But I am not fun anymore, I wanted to say. I don't party and sleep 10 hours a night and complain about hurting a lot. Yes there is still the same person at the core, but if I am going anywhere it is with my husband and it is to chill, not mix margaritas in my mouth while my brain rocks my skull. And not just because I have to, but because I want to. I am working on my career in a far different way. My children are canine and I am more than happy about that. We are not buying a house or going on a fancy vacation anytime soon. 6 all-inclusive days in the ICU with 2 MRI's and CT's and spinal taps was my "vacation" last year. There is just no money for anything else. And as I logged off, letting that girl float back into the vacancy she exists in, I shed a few tears. 

I don't know what my life would be like had I not gotten sick. My husband was in college the first 5 years of our marriage. He graduated and got a good job. I was working my way up the corporate cosmetics ladder and we were finally, for the first time ever, going to be able to pay our bills each month! We bought Yorkie, figuring we had a couple of years to mentally and financially prepare for babies. And then 2 weeks after he graduated I got sick. In a way I feel it was inevitable. For if that crazy week of his graduation, the party, moving, getting a really wild 10-week-old Yorkie puppy and my Grandfather passing away had not occurred, the "trigger event" would have found me eventually. It was just the way I lived my life. Fast and hectic. Ambitious and big. I laugh now and say thank God I did it then, for I sure could not now! But examining the vast difference between my life and those friends from the past made me take pause, and I found a gratefulness in my heart that my depressed self had been suppressing. A gratefulness that I had found a community I fit in to. As I shut down the computer and got ready to snuggle up to my husband in bed a long-forgotten song popped into my head. Que sera sera, whatever will be will be. It reminded me that I am not the  master controller of my life. All I know is I will continue to do the best I can with what I am given, I will forgive myself as I forgive those that have hurt me and I will take some time off every once and a while to stop and smell the roses. For they sure smell a lot better than that monkey shit.

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Tuesday, March 15, 2011

What Is A Blog? (Re-post from March 14, 2010)

Yesterday was the 1 year anniversary of Chronicles of Fibromyalgia. I have re-posted my first post. Wow, what a journey it has been and roller-coaster ride we have endured! Enjoy!

I was talking to my husband last night about how I really need to have more discipline doing my daily writing. He suggested I start a blog. I don't really know what a blog is...I have never read one or even seen one for that matter. So naturally I scoffed at him, telling him I have nothing of any interest to anyone to write about. He asked me what the hell I was talking about and said, "Write about what you know most, about Fibromyalgia! You have made amazing progress, progress the doctors never expected, and you have a lot of good information and insight to share." Being the self-proclaimed expert that I am, I pondered his challenge. He is right, I have a voice and point of view that are begging to be heard and I am well versed in the daily nightmare that encompass living with this disease. Unfortunately, I lack the organization, focus or opportunity at this point in my life to actually do anything serious about it. So after about all of 5 minutes of deliberation I figured what the hell, I will give this blog thing a try!

I am a 33 year old married woman currently living with managed Fibromyalgia. I got sick when I was 28 years old and have had one hell of a tailspin since then just trying to make life livable again. Beating this disease is the hardest thing I have ever done, and by the grace of God that I ever have to do. It has cost me dearly in every aspect of my life, but it has grown me in ways I never thought possible as well. It has challenged me and pained me and given me a gratefulness I did not possess before. I am blessed with an amazing husband, caring family and supportive friends who have stood by me through the worst of it. When I got sick I was so young and had so much to live for there was only one brief glimmer of a moment when I was without fight. Oh, and I am one stubborn bat as well so I guess that goes to my credit too!

What my tale tells is a complex web of devastation, disappointment, confusion and loss. It is also a story of self-realization, healing, redemption, acceptance and forgiveness. I will intermingle the daily chronicles of my life amidst the history and reflection of my journey with Fibromyalgia. I hope it will inspire someone to gain insight, hope, direction or fight in their personal battles. I also hope I will make peace with the force that knocked me off my feet and struck me down repeatedly for years in my unrelentless attempt to claim my life back.

So here we go...welcome and have fun!

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Monday, March 14, 2011

Cleared For Take-Off

Know how when you are taking off in an airplane and the flight attendants do a disaster demonstration and say "Secure your breathing mask first, then those of your children or others around you" and it makes perfect sense? Well that philosophy applies to plain ole' every day life as well. Unfortunately it takes a while and a few hard knocks for some of us to get it. I am one of those. I started this blog because I wanted to write a book. But the feedback from the blog was astounding and out of intense need a patient-based awareness campaign sprung up. I did not expect this but ran with it, because the quality of life most Fibromyalgia patients live with sucks and we need to get the word out that this is not okay! I had been in that miserable 7th circle myself and was fortunate enough to find a way up and out. My Fibromyalgia was managed. Having just survived 2 strokes with nothing more than a few scrapes and bruises, I felt a calling to be a voice for a patient body that was splintered, emotionally abused and barely hanging on. I was also on high-dose steroids to treat the strokes. It gave me manic and frenzy and boundless energy. Fibromyalgia, for all intents and purposes, felt "gone" and despite the abundance of hair growing on my body and my rapidly expanding mid-section, I was frantically racing around at top speed getting things done.

And then I tapered off Prednisone. I found my Fibromyalgia was not nearly as well managed as it had been before the strokes and underneath all that obsessive energy there was no energy. But I still tried to keep up with the pace I had established, ignoring my body and soul crying out for some attention, a break, some balance. But I kept demanding from myself and little miss type "A" was gleefully in control, running rampant at top speed. I was repeating the exact same behavior pattern that gifted me with a serious emotional breakdown during the worst of my CFS/FM journey. But I was unstoppable, would not listen, scoffed at those that told me to chill out, take it easy, relax. There is too much to do! To much awareness to spread, people to rally, maneuvers and tactics to launch!  I ignored my humanity and pushed my little-engine-that-could to the brink.

I never in my life thought I would be in a position to seek out fame or the public spotlight. Although I am far from "famous", with the expanding audience of the blog and awareness campaign I was attracting a fair amount of attention. Unfortunately with it comes the attention of those in our community that like to stir-up trouble. And some of them are quite skilled at their chosen craft! So as hole after hole was punched into the dam which was holding back the intensity of emotion, sensitivity, vulnerability and sanity residing inside my heart and soul, the dam weakened. Hole after hole. Punch after punch. At one point I declared myself impervious to hatred and attack. I was so proud that I could be verbally eviscerated and not give a rat's woo-ha! Hole punch. Hole punch. But my sensibilities are far too sensitive. I was still ignoring my heart and soul. And as each hole was punched into the dam it eventually weakened to the point that it burst. And that was last Thursday. I finally had to lie my head down and rest, for I had no more to give. Now I have rested, laughed, relaxed and regained my focus and perspective. And it is going to be different this time. I am taking care of myself first. I am blogging 5 days a week, not 6. I am engaging in hobbies that have been ignored for a long time. Reading, sunbathing, gardening, hanging out with my friends and family without guilt that I should be working. I am practicing yoga and meditating. For I am in this for the long haul, and have toughened up without giving my sensitivity away. So at a Fibro-pace, haters beware, I am ready to Crusade again.

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Thursday, March 10, 2011

I Know Who I Think I Am

Well I sure threw a little tantrum this morning! I have been struggling with some depression these last few weeks and today was the first day I woke with true and genuine joy in my heart. But with that joy I let my defenses down. Defenses I have long used to survive the game of putting myself in the public spotlight. And I got kicked. And it surprised me and it hurt. And I flipped out. But the pure outpouring of love and support I got in return was astounding. I recognize the need so many have for the blogs and The Crusade but more than that realized how much I need all of you. I am sorry for the upset I have caused. I am going to take the weekend off, spend some time nurturing and building myself up again. Know how you can tell someone is barreling toward disaster and you scream and yell for them to stop but they ignore you? Well this was coming, and it was obvious to those that know me well, but in my true stubborn fashion I ignored them. So now I know who I am. I am Leah Tyler, fibro-blogger and leader of The Fibromyalgia Crusade. And I am also a woman that has a responsibility to exercise balance in her life so it does not burst into flames at the near mention of a match. Thank you for your love and support. Enjoy your weekend and I will be back on Monday.


Who Do I Think I Am?

I feel like such a moron. Such an idiot for thinking I could truly affect change. A dim wit thinking little ol' me could actually do something to bring awareness, unite a splintered patient body and further the advancement of people's lives that have Fibromyalgia. Thinking I could blog each day and start an awareness campaign and start an online support group and bring an often emotionally abused group of people together to show the world we are not crazy, lazy, wimpy or junkies. We are truly sick and need answers and help, not dismissive doctors and disabling drugs. I never knew how much hate I would encounter along the way. AND NOT ONE BIT OF IT HAS BEEN FROM OUTSIDE OUR COMMUNITY. So carry on, Fibro patients. Keep ripping each other apart. I am not strong enough for this. I am a woman who is sick too. I am a woman that pays her bills by the skin of her teeth each month off the broken back of my husband and his commitment to keep us up and running. I AM SO STUPID! I invested far more into this venture financially than I have ever seen returned. I invested my heart and soul and sacrificed so much. And for what? To be judged and slandered and degraded by the very people I am trying to help? People I though were like me but are not. For I understand the soul is as delicate as a butterfly and carry compassion in my heart for those that struggle with this terrible illness. Shame on me for thinking it would be returned.

Wednesday, March 9, 2011

I Used To Exist In The Land Of Time

A while back my husband and I were watching one of those wife-swap type shows where they stick the messy mom in the OCD mom's house and vice-versus, and we get to watch both families flip out. Not because we purposely sought it out, but because it just happened to be what we were watching. On this particular episode we were introduced to the most awesome couple we have ever not met. They were a hippiesh bi-racial couple living in Venice Beach. Very relaxed and go with the flow kind of folks living very unstructured lives. Of course they are "wife swapped" with an Italian New Jersey housewife who spends her days scrubbing her house from top to bottom and fulfilling every beck and call from her husband and children. While in that little confessional reality TV room the California husband and his 2 feet long dreadlocks announce that he "used to exist in the land of time" but had decided to give it up. It was too stressful. He did what he wanted when he wanted and that was the bottom line. My husband and I looked at each other quizzically and then burst out laughing. We were not aware time was an optional state of being!

Since then it has become a long-standing household joke. It usually pops its head up when we are running late to something we really don't want to go to. You know, like work or well, work! But I have noticed all sorts of time issues since my CFS/Fibro journey began. I feel like each day is a race to catch the clock someone threw out the window the second I wake up, and I can never quite catch it. I never get done all I need to do. I have also developed this "being late" issue that is becoming quite a nuisance and introduces a significant amount of stress to my life. As a child my mom was the one that was late. I would throw fits and tantrums because she was frequently drastically delayed and I took it as a personal affront. As a teenager into adulthood I was usually frivolously early. Sure it was annoying, sitting there waiting all the time, but that was just who I was. 

Then came CFS and Fibro and I became the one with the late problem. If I had a penny for each time my husband has asked me how much longer until I am ready to go, I would be retired on some island somewhere sipping Pina colada's and rolling around in cash. I nearly miss practically every doctor appointment since they only seem to run behind when I am not. My mother now waits for me to arrive, my husband keeps reminding me that showing up as the party is ending is NOT "fashionably late" and I have learned how to put on mascara while driving. And then I signed up for this Spanish class. Senora profesora was strict. Walking into class late was a very uncomfortable feeling, as her eyes, along with the rest of the classes, bored holes into me. So I had to figure this one out. I realized if I switched the order of my get-ready routine around I could shave minutes off my "late problem". I may not look as good, but at least I was there! Its all these little things in life that amount to one big headache in learning how to live with a chronic illness. Switching around long-established routines, learning how to let things go, remembering what is important and what is not worth fussing over. This everyday struggle is never an easy one, but until I can choose to no longer exist in the land of time, I gotta keep trying to figure it out.

Thanks for joining,

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Tuesday, March 8, 2011

You Say You Want A Revolution?

The diagnostic criteria for Fibromyalgia was established by the American College of Rheumatology in 1990. 21 years later entirely too many of our medical professionals still don't "believe" in it. Dismiss us as lazy, crazy, wimpy or junkies, believing it is depression or made-up or whatever. As new research comes in it is trying to ditch the "Arthritic" classification and align itself as a "Neurological" illness. However, if one has a Rheumatic disease they are more likely to develop Fibromyalgia. It is very confusing and complicated. The Mayo Clinic, a trusted superior authority in medical advancements and research, explains the unknown causes and known research:

"Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
  • Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
  • Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
  • Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals. Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals."*

That's it? That is all they have come up with in 21 years? That and 3 FDA approved drugs, the first approval in 2007. WHY? Because of lack of research. Because of lack of funding. Because of lack of awareness. Because we the patients are too sick to fight for ourselves. Because we the patients spend our precious diminished energy fighting each other since we all experience Fibromyalgia so differently. Because we the patients are ashamed to have something that is not "real" so we shut-up and suffer silently and miserably. And while it is not a terminal illness, it can progress to the point where one can no longer function, rendering them disabled. And then its good luck getting that disability check or government health care or prescriptions to dull the raging burning fire inside. It's a horrible situation not enough people are doing not enough about!

As I started networking and sharing my blog with so many other Fibromyalgia patients last summer I became seriously enraged. So I started this little awareness campaign called The Fibromyalgia Crusade on September 24, 2010. It was a rant of a post on my Facebook notes, a just planted seed. I had no idea what I was going to do, just knew something had to be done. I looked out and saw a huge and growing patient body suffering beyond belief and knew if we came together, putting all the petty differences aside, and stood strong as one huge collective, we could affect change. We have grown, my we have grown, and slowly but surely it is knitting itself into a mighty cause. 
  • We developed a "Purple Pain Code" to communicate our fluctuating symptoms to each other. 
  • We created a Doctor Appointment packet for those that needed help in getting their symptoms managed with their doctor. 
  • We started a support page on Facebook called The Fibromyalgia Fun House
  • We began wearing The Fibromyalgia Crusade wristbands and key chains in our 3 eye catching colors of the Purple Pain Code. 
  • We developed a postcard with a brief summary and description of who we are and what Fibromyalgia is, which one can print and pass out to those that are uninformed.  
  • We started talking about it and standing up for ourselves to all the naysayers. 
  • Now we are wearing tee-shirts with our beautiful purple ribbon, dark at the top fading to light at the bottom, blaring Fibromyalgia awareness into the faces of everyone we come into contact with and standing tall in the reality of this illness, with the strength of The Crusade behind us.
So that was phase 1.

Now we must progress to phase 2. I am writing a letter to our government, from the President on down to Governors of states, and everyone in between, that will be made available shortly and each person can print out, add their story, and send to their elected representatives.  We are taking "government for the people, by the people" at its word and exercising our rights. And maybe if enough of that The Fibromyalgia Crusade letterhead passes the desks of these Senators and Congressmen we will start to get some attention. And that is all we need to start a revolution.

Thanks for joining,

 The Fibromyalgia Crusade Tee Shirts up to size 4x are in!

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Monday, March 7, 2011

Slap In The Face

This weekend was a tough one. Weekends were not working for us. I still blog and conduct business on Saturdays and my husband wants to jump out of bed and literally get in the car to head to the dog park the second we wake up. I told him in the interest of not shocking the dogs or their owners with a frightful sight, I gotta have time to get myself ready for the day. It was beginning to feel like my life was one "Are you ready yet?" in 30 second intervals after the other. I was getting stressed and resentful and not enjoying our time together because by the time we finally got anywhere he was pissed at me that half the day was over with and I was pissed at him for all the stress he was causing me, a slow moving Fibrate doing the best I can to get my butt out the door! So we talked and came to a resolve. He has his Saturdays till 4pm to take care of his business and I have the same to take care of mine. This weekend was our first opportunity to practice our new strategy.

Saturday started out well enough. He got up early and did dog-park-gym-who-knows-what and I slept in. Then I blogged, made my rounds around the Fun House and got ready to go get our hair cut. We met up at 3 and it was such a less stressful experience. Afterward we decided to enjoy the sunny and pleasantly warmish day and walked around, talking and exploring, until we settled on what looked to be one happenin' spot! DJ blaring, outdoor patio full. Groups of people drinking and eating and laughing and having fun. We grabbed a table and he starts in with Martini's and I have a Bellini. As he drinks his excitement grows, for we were amongst the land of the living, and it has been so long! He tells me he wants friends and a social life again and has missed living for these last 6 years. I hear him, I truly do, and try to squash that guilt monster sneaking up inside me. His feelings, wants and desires are all so normal.

But as the sun goes down it gets cold. And the droves of stilettoed and mini-skirted 20-somethings come pouring in. The place is packed! My husband is drunk and having such a fun time and I am quickly and quietly spiraling down into the misery of Fibro pain and overdoing it and too much stimulation. But the light in his eyes, the excitement and joy at simply being somewhere other than his living room with his wife keeps me quiet. I am sitting there, a tense and stressed out little bundle of nerves, sinking deeper and deeper into pain and hurt and anxiety. And it is there I get slapped in the face. For once again I am reminded I am so not normal. I cannot go and do like a normal. All I wanted was to be in sweats sitting on my sofa watching TV. Warm and safe. I 'll admit I did a little bit of mourning. For my lost self. Who I was. And how far away she is from me now. And how I cannot even pick up the shell of my former self and put it on for one measly afternoon. So we head home and as we are walking to the car he grabs me and kisses me, deep and long, and it shocks me, knocks me off my guard. And then I get mad all over again that my husband kissing me in public is a surprising experience. How is this is the woman who was proposed to while straddling him at The House Of Blues in Hollywood on New Years Eve? Who is she and where has she gone? I want her back.

Thanks for joining,
The Fibromyalgia Crusade Tee Shirts up too size 4x are in!

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

Sunday, March 6, 2011

The Fibromyalgia Life Cycle (Repost from September 23, 2010)

Fibromyalgia has come a long way since I was diagnosed in 2006. The FDA approved Lyrica a year later and overnight it went from "being in your head" to a real condition...for some medical professionals. Not all jumped on the bandwagon because there is still no definitive test to confirm diagnosis, but it was mildly legitimized. At least there was a sector that believed us, that we were hurting, throbbing, on fire inside, crushing ourselves as we walked, not just crazy or lazy or wimpy. Then along came Cymbalta in 2008 and we were given another win, another "option" in managing raging invisible pain. Savella came along last year and has rounded out modern medicines attempt to give us our lives back. For some these drugs have worked wonders, for others they have caused disaster. For many it lies somewhere in between, but at least the word Fibromyalgia has some sort of an association to the general public. When I tell someone I have Fibromyalgia I say, "You know, the commercials for Lyrica?" and they usually nod their head with a vague sort of recognition, not at all getting it, but at least I don't sound like a lunatic mentioning it for the first time. But Fibromyalgia awareness has a LONG way to go.

As I have connected with hundreds of fellow-fibrates and we exchange stories, methods of management, frustrations and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle... The potential Fibromyalgia has to completely destroy a person and take down their life is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.

This is the pattern of the worst case scenario, what happens all too often to entirely too many people:

1. A person gets sick, develops horrible pain and it does not go away.

2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.

3. The pain, fatigue and insomnia progress to the point that its all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient's fault or a mental problem. The ability to parent their children, maintain relationships and friendships or exist as a normal person dwindles down to nothing.
4. The capacity to do their job is compromised as more and more days of work are missed and important information "forgotten" in the file of Fibro-fog.

5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!

6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to "diagnose" Fibromyalgia and the full impact it has on a persons ability to function or doctors to support the depth of destruction this disease holds over a persons life.

7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in... 

And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snails pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow-fibrates! We are going to change the face of living with this disease. Hold your head high, nurture your aching body and run away from naysayers and doubters as fast as you can...because a revolution is brewing...The Fibromyalgia Crusade is on its way!

Thanks for joining,