Dear Fibromyalgia

Tag: fibromyalgia warriors

Celebrate the resilience of Fibromyalgia warriors, sharing stories of strength, tips for managing symptoms, and resources for support and empowerment.

Fibromyalgia in the Real World

I had an extremely eye-opening and revealing thing happen to me this weekend. Whilst I was dealing with some minor family upset, I Fibro–crashed. All my energy had been spent and exhaustion socked me square in the jaw. I became stiff and inflamed all over my body. I hurt and no position made me comfortable, sitting, standing, lying down, it all just ached. I became foggy and hazy in my brain and the slightest bit of stress caused catastrophe to my central nervous system, meaning I was a bit of a blithering mess! It was a meltdown of all functioning parts. So as I am Frankenstein-lurching around someone very close to me started pouring their angst out, about the situation I could do nothing about, and instead of being able to listen and give comfort or care, I lost it. OVERLOAD ALERT! I sat there looking at this very important and supportive person in my life like they were from Mars. I could not understand why I was their chosen therapist for the moment when I was so clearly not coping well myself. I mean I had all but a red siren flashing on top of my head screaming FLARE! Couldn’t they see this? Didn’t they know?

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But the answer was no. In the midst of their emotional reaction to what was going on, they leaned on someone you would typically be able to lean on. And although I have complained of fog and fatigue and exhaustion for years, it turns out I had never properly explained the stress factor. See we don’t process stress the way an undamaged brain would. Very low threshold, very extreme reactions and the aftermath is a deflated ball of a person kicked into a weed-filled corner of the schoolyard. They could not figure out why I was freaking out and I could not understand why they were utilizing me as a pillar of strength when I was clearly a puddle on the ground.

Luckily we had a chance to remove ourselves from the situation, I indulged my flare and pretty much spent the weekend at the pool, and they came to grips with their emotional entanglement. We were then able to talk and assess where our communication breakdown occurred. Through this exchange, I learned something very important about myself, Fibromyalgia, and how to manage it in a demanding and stressful world. Never take anything for granted. For in your mind you may have explained all the in’s and out’s of living with Fibromyalgia until you are blue in the face, dotted all your i’s, and crossed all your t’s. And sadly most of us have lost friends or family that refuse to accept, believe or understand our illness. But the ones that are still there, the ones that offer support and show unconditional love and stand by your side, are the ones I am talking about. Those are the ones we cannot just assume exist in our brains and understand our experience. Those are the ones we must constantly remind ourselves what we can and cannot do. In explaining all this I realized I learn more daily about how Fibromyalgia impacts my life through my efforts to manage it, so how could I possibly expect another person to be aware of something about me that I myself have just learned? In light of this new revelation, I am redesigning the information cards for The Fibromyalgia Crusade. On the back, I am going to list, in common spoken terms, how living with Fibro impacts our lives. So please feel free to comment, email me or throw your 2 cents in at The Fun House. We are going to progress awareness of this illness if it is the last thing we do. It is simply too important not to.

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/06/2022
All these positive Fibromyalgia experiences

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 it’s 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).

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A few weeks back I was on the phone with GoDaddy. Abacus girl was attempting to navigate the world of domain names and websites and the rep started asking me about Fibromyalgia. As I was explaining what The Fibromyalgia Crusade is all about he was asking sincere questions to further his understanding. It was amazing! I clearly taught him more about Fibro than he did me about domains (that’s okay, he did what I needed him to do), and at the end of our conversation, he thanked me for my knowledge, educating him on something he knew nothing about. Then the topic of what we did for a living (haha) came up while I was serving Jury Duty. The jury and I were waiting in the deliberation room and I told them I was starting a health awareness campaign. They asked me what for and when I told them, two ladies quickly took over the conversation and started filling in the rest of the group as to what Fibromyalgia is! I was shocked and thrilled! Of course right as we were getting to the meat of the matter the bailiff came in to lead us back to court, but it was awesome nonetheless. Then yesterday I called the phone company to figure out why my bill had gone up. When she inquired about my internet usage I told her I was a blogger and online for like 10 hours a day. She asked what I blogged about and when I told her she was thrilled! Her sister-in-law and best friend both have Fibromyalgia and she jotted down The Chronicle’s web address to share with them. All of a sudden the world seems to care or at least want to know more about Fibromyalgia!

We have to hit this hard, my fellow crusaders! The world is listening now, and we need to start singing and not shut up until life with Fibromyalgia is manageable, we are no longer blamed for our illness and the general public has at least a common knowledge of it like they do M.S or Lupus. The more we talk, the more others know and the more they know, the more seriously we are taken. It is going to take HUGE amounts of education, fuss, flurry, and promotion for us to turn acceptance and comprehension around but we can do it! So start singin’… Start talking to anyone and everyone that will listen. But I believe the way we go about it is just as important as actually doing it. Take your personal experience out of it. Refer to yourself as part of a campaign to bring awareness to an illness you actually suffer from and then keep it general! Educate them with a brief summary that you are comfortable pulling out of your back pocket on demand and if you are met with doubt, skepticism or criticism kindly find a way to remove yourself from their presence and run away as fast as possible! Don’t take their ignorance personally, let it dampen your passion. Then try again with the next encounter, and just keep promoting, educating, and furthering our cause. As we all know Fibromyalgia is not just going to go away, and we are not going to stop until something gives, for the current state is unacceptable. So open up that throat, caged bird, and sing! Sing of a life of pain imprisonment and medical frustration. Sing about the loss of function and limited treatment options. Remember, we are on a crusade and we are going to win!

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/05/2022
The Color Purple is for Fibromyalgia

As most of us are well acquainted, the color of our support ribbon is purple. Purple is a traditional color of royalty, the color of the Crown Chakra which is linked to the crown of the head, the nervous system, and the brain (okay can someone please say Fibromyalgia!), and is representative of pure thought. The Purple Heart represents courage in the military and pride in Christianity, just to name a few of its associations. Oh, purple has assumed an enlightened and vast embodiment throughout history. The study of purple in psychology has been shown to uplift, calm the mind and nerves (here we go with Fibromyalgia again), offer a sense of spirituality, and encourage creativity. “Purple embodies the balance of red’s stimulation and blue’s calm… With a sense of mystic and royal qualities, purple is a color often well-liked by very creative or eccentric types.”* We are in very good company with the color purple!

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Today a Facebook Fibro–sister mused she wished we had a code to represent how we are feeling. She is sick of complaining all the time but still knows how important it is to communicate her pain to those that truly understand, her support network. I thought this was an excellent idea and tried to come up with a “code“, which inspired all sorts of hilarious comments, acceptance, and criticism at the Fibro-Fun House (my Facebook page for those that have not joined it, and should!). I figured going off our designated ribbon color would give us an anchor, and allowed my mind to absorb the color purple in its infinite number of shades, tones, and hues. As I traveled down this imaginative exercise I felt the lighter the color the lighter the symptoms, and the deeper the color the more raging the pain. So I painted a pretty little picture in my mind of Fibromyalgia as viewed through a purple kaleidoscope. Lilac starts out soft and light and represents a pretty darn good day. Mulberry deepens and intensifies slightly and marks the middle of the road, not great, yet not horrible either. Amethyst finished the journey with all-consuming PAIN FROM HELL, one of the deepest shades of purple. So I posted my idea and have spent the better part of the day cracking up over the reaction it has been getting. I also LOVED knowing how my fellow fibrates were doing, many more Lilac’s were out there than I realized! And for the Mulberry’s and Amethyst’s it was helpful to know how you were feeling because so much of the time we just shut up about it, stuck in an eternal Groundhog Day of repetitive complaining even we get sick and tired of hearing ourselves grumble about.

Quite a few hated my color choices! “Too complicated…I won’t spell them right…I can’t remember that…I have Fibro-fog!” And I hear you, I do, but there is something off-beat, individual, and funny about comparing the wreckage of our lives from this illness to flowers and gemstones. It somehow removes the ownership of the pain and places it in another dimension of the reality of living with Fibromyalgia. So for those that are willing, interested, or care I would love to try this out for a week or so. Come to the Fibro–Fun House and let us know how you are feeling for the day. Let us know if you woke up Amethyst (all-consuming) and have sailed into a light Mulberry (middle-of-the-road) because something is working for you. Let us know if you started the day out Lilac (light) and have spiraled into an Amethyst-tinged Mulberry because today is simply sucking. Try it out! See if it helps to take some of the pressure off, some of the misery, some of the ownership of the pain. See if it helps to have a way to communicate to your fellow Fibrates, your true comprehenders, without having to spell out the literal misery we desperately bang our heads against the wall for the non-fibrous in our lives to doubtlessly comprehend.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/04/2022
I am so sorry I have Fibromyalgia

I frequently find myself either bitterly acting out or saying this to those around me. Apologizing to those whose lives are affected by my illness, as though it is something I did or like or want or don’t suffer horribly from myself. As hard as Fibromyalgia is to manage, the guilt on top of everything else is ridiculous! Do other chronic illness sufferers feel the same way or is this particular to our condition because science and medicine are still so clueless about it? Because there is a massive “blame the patient” stigma attached to Fibromyalgia? I honestly don’t know. All I know is that when it comes time to take care of myself because I am in a flare or have not slept or am hurting so bad I simply cannot get up off the sofa I feel guilty. Guilt tinged with absurd anger, and usually jump up to try to perform whatever task is in question. Many ‘o many a time I have picked a fight with my husband simply by projecting this onto him. I take my own disappointment in myself, my own frustration at my limitations, and get mad at him for treating me like I am letting him down. Poor guy! Still wonder why he puts up with me… He will just stand there helpless as I freak out and slam the dishes out of the dishwasher, into the cupboard, or begrudgingly start throwing laundry around, stuffing it into the washer. Sometimes he gets mad back, if he is short-tempered already, telling me this is my issue, not his. Other times he shows me compassion and tries to get me to be nicer to myself. Either way, it sure sucks to be him right then and there!

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Why is it so hard to show me kindness and self-respect? I know Fibromyalgia is “not in my head”, yet my actions sing a different tune! I know how to take care of myself to minimize the symptoms I suffer from on a daily basis, yet feel it frivolous to do so. One of the biggest personality flaws that reared its very ugly head when I first became so ill with CFS & Fibromyalgia was the need for approval to be sick. I needed it everywhere, from everyone! Mom, dad, husband, friends, coworkers, bosses…not to mention doctors and therapists! It was as though if everyone would get together and collectively say “Poor Leah, she is so sick!” I had the permission I was looking for to take care of myself. But there was NO ONE lining up to do that. No one knew what was wrong with me, it was living hell finding a doctor to even take me seriously, let alone people that I crossed paths with on the streets of life.

The emotional growth I went through on this 1 issue alone was massive. I had to really get to the root of why it was so important for everyone to “agree” that I was truly ill. Did this stem from childhood need for acceptance? Did I need permission to lay down my “type A” evil ways and just be? Was I completely lacking the self-esteem necessary to be nice to myself? All I know is that accepting that Fibromyalgia and Leah had to come to terms with each other was something that happened bit by bit, little by little, inch by inch. I slowly peeled back the layers of emotional weakness that needed so bad and realized that if I was to survive this monstrosity it was only going to happen because it was on my terms. Getting to the point where the opinions and judgment of others regarding my methods of managing myself were of little importance to me took years. It is still something I struggle with, but I can sure say that my need for approval has gone from Amethyst to Lilac and that makes it much easier to take care of me.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/03/2022
The Fibromyalgia Crusade

I am launching THE FIBROMYALGIA CRUSADE! I am a Fibromyalgia patient, not a doctor, scientist, researcher, or Ph.D. I am a real woman living a real-life with a real disease that receives little to no respect or understanding from the world at large. I became ill in 2005 and have devoted the last 5 years of my life to overcome the debilitating and miserable reality that is living with Fibromyalgia.

My medical history is complex. My journey is fraught with as much failure as success. I have worked harder than I ever have for anything in my life to regain a quality worth living, and with an amazing support network is amazed to say that not only do I survive, I thrive! But my heart is breaking…

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I started this blog, “Chronicles Of Fibromyalgia”, last March. It was a way for me to dissect and therefore begin to understand how life had deposited me in the strange and foreign land I found myself residing in. I also dream of a career as a writer and utilize the blog as an outlet to exercise those skills. But I was private, I was unsure. I was embarrassed by the truth of my reality and kept it to myself, all the while progressing emotionally and physically in leaps and bounds as I began to unravel the tangled ball of yarn that my life had become.

And then at the end of July, mere days before my 34th birthday, I had 2 strokes. I nearly died, came within a hairsbreadth, but have miraculously recovered and with treatment am going to be just fine. This near-death experience woke me up! It renewed in me a responsibility to my fellow man, Fibromyalgia–sufferers specifically. I stopped caring about acceptance or judgment and went public with very intimate and private details of my struggle. I utilized Facebook and my blog as a way to reach out to other normal everyday folks trudging through the grim and dismal misunderstood darkness that each day is when one lives with Fibromyalgia.

The response has been overwhelming! People have been crawling out of the woodworks to link up and gain support, a sympathetic ear, a shoulder to lean on that truly understands how awful life can become when one is forced to live sick in a world of healthy expectation. I have knitted together a small network of fellow fibrates that are all singing the same song, just to a different tune. As I have become aware of the story after story following the same devastating outline I have become enraged! There is too much loss and suffering and ignorance surrounding this condition. With every beat of my heart, I want to change the reality of living with Fibromyalgia. Take it from a doubted and questioned condition and give it the validity it deserves. Making people recognize the suffering and loss and devastation is indeed real, as real as the air we breathe, and I believe if the THOUSANDS of Fibromyalgia patients out there came together, stood strong as 1 voice, it can be done!

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/01/2022
How can I explain Fibromyalgia?

I attended the birthday party of a good friend last night. Just an intimate and impromptu get-together at her house, I found myself given the opportunity for the first time since I have taken up the proverbial Fibromyalgia cross to promote my condition and raise awareness, the new charge of my life. But I was at a loss as to how to explain it without launching into 20 minutes of background information to answer each question. It is a messy and complicated experience with so many variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a “30-Second Elevator Ride” synopsis that clearly defines, explains, and promotes the cause. So today amidst the booming NY Giants (GO GIANTS!) game pulsing from my big-screen, I set out to research and condense the best, most effective, clear & concise synopsis of Fibromyalgia that will get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise it, not to diss the attention their advertising brings, but really WHAT IS FIBROMYALGIA?

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“Fibromyalgia affects between 2-6 million Americans. It is a neurological condition stemming from the central nervous system that produces a sensation of severe body pain, stiffness, cognitive impairment, fatigue & insomnia. Fibromyalgia patients frequently suffer from other symptoms and complex medical conditions as well. It is believed to be caused by a cluster of factors working together; genetic mutation susceptibility, infections, and a specific trauma or injury. There is no cure and prescription treatments offer limited relief with high incidents of side effects. It is a lifelong, non-degenerative condition that can be managed using a holistic, total body approach to wellness but the quality of life of a Fibromyalgia patient is forever altered as basic life functioning diminishes.”

Well, there you have it, folks! This is Fibromyalgia as Leah views it. I tried to keep it scientifically loose, comprehensible to the average person, and broad enough to encompass the variety and flux of symptoms and severity we all suffer from. Now I just have to commit this to memory (fibro fog!) and pull it out any chance I get. If I keep the focus off my specific experience and make it more about a general condition many suffer from I believe that will go a long way to promoting the “realness” of this awesome predicament we find ourselves in.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/31/2022
The Fibromyalgia life cycle

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 the 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 the disaster. For many, it lies somewhere in between, but at least the word Fibromyalgia has some sort of an association with 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 lives 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.

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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 it’s 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 person’s ability to function or doctors to support the depth of destruction this disease holds over a person 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 snail’s 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.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/31/2022
How has my marriage survived Fibromyalgia?

I logged onto Facebook this morning, feeling estranged and isolated from my Fibro family. This weekend absorbed all of me in physical pain and emotional anguish debauchery of lowered Prednisone dosing and all the joys that accompany coming off that drug. Just taking the dogs on a walk this morning picked me up and plopped me right back in the middle of Northern California, about 2007. Pick any month, the weather sucks all the time, and that feeling of every muscle screaming with the slightest movement and each nerve ending snaking and snapping pain throughout every inch inside of my body. Each steps a prayer closer to home. I truly battle between accepting that this is the new me post-strokes, and this is just the adjustment of coming off Prednisone and I will resume my nicely managed form of Fibromyalgia once this drug is out of my system (what my doctor thinks). Somehow I get the feeling it is not going to be that easy.

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I glanced at my feed and my attention was drawn to a blog from the NFA about Fibro and relationships, marriage, and dating. This is something we ALL deal with, for we are not the people we once were, and hanging onto a relationship from then is very difficult. So is finding a new one with the limitations Fibro imposes. It’s a no-win, sticky situation. The author of the blog quickly discloses her 3 failed marriages and proceeds to describe how her illness impacted her first one, the man to whom she was married when she first got sick and received her diagnosis. She could not participate in the active social life they once shared (sound familiar?) and he went on without her. And that stopped me cold. Because it made me realize one of the key components of why my marriage is still successful is because my husband refused to do that. If we had plans and I was too sick to go, we canceled. If an opportunity arose to attend a function but it was after a long day of work for me, we declined. He would sit by my miserable and complaining and bitching and moaning aside, watching Law & Order re-runs, miserable himself I am sure. But he stuck by me. I felt terrible like I was keeping him in prison, begging and pleading with him to not quit his life because I had to quit mine, but he always refused, never a question in his mind that he would rather be with me as I was than without me anywhere.

So when I started getting better and living life again, we started living life again. And as we discovered the reality that mess of an illness left my life in, shambles and broken, it was our life to put back together again. I started hearing from him that he was so glad to be getting his wife back. Still to this day he is quite protective of our time and does not want to spend it with a lot of other people. How did I get this lucky? Beats the hell out of me, but that is what I got. It is normal, I suppose, to put your own needs above your partner’s or “the relationship’s” needs. But my husband was never that man. He wanted me by his side in everything he did or he was not going to do it. He has always been a bit obsessive, and our relationship is no exception. He has sacrificed in many ways, because of my illnesses. Yet last night as we are going to bed I shake my head and say, “This has been an insane life, a crazy last 5 years.” His reply was that it had been for me. I was the one all this crap had happened to. I asked him so what, then, he has just been along for the ride? He smiled and said yes.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/30/2022
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 soothe the raging monster inside.

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I am so sick and tired of EVERYTHING is 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 into 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 said…it 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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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

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Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

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07/29/2022
Getting sick of sick from Fibromyalgia

At the end of July, I had 2 strokes. Old news to most, new news to a few. I was diagnosed with a treatable and reversible form of Vasculitis, put on Prednisone, and sent home to recover. Now I will utilize modern medicine for many things but prefer to go as natural as possible as much as I can. Pancreatitis, give me the drugs. Vasculitis, bring ’em on! VICD, you bet ‘cha I will crush that virus with anti-virals. But day-to-day living and management of Fibromyalgia depend on lifestyle for me. I rely on a moderate dose of Neurontin and habit modification; reducing stress, taking my vitamins, exercising, cutting out processed foods from my diet, etc. I always believed that steroids were BAD and to be avoided at all costs. In retrospect it is kinda funny (in that sick and ironic funny way), when I was in the ER and the doctor told me he was going to do a Spinal Tap, which would require a minimal amount of steroids, I balked at him. NO STEROIDS I said. He smirked in a sad way that said I did not have a choice. So the irony is not lost on me that the treatment for my particular stroke-causing condition is high-doses of Prednisone for months on end.

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

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

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/28/2022