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Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Monday, March 12, 2018

NEVER Give Up HOPE

I've said it before and I'll say it again.  I'll never stop saying it.  NEVER Give Up HOPE.  Without HOPE, we don't have anything!  

Find more support on the blog's facebook page, just click the following link: The Fibro Frog On Facebook


Saturday, January 17, 2015

I've Been Bad .....



Here it is, the 17th of January 2015 already.  I've been really bad about blogging.  I've kept up with my facebook page daily ...or every other day, but I've been so bad about blogging.  I'd like to blame that on the depression I've been feeling, but if I've kept up with the facebook page than that means I've just been too lazy to blog.

The truth is, I haven't had anything positive to say, but then again this blog isn't about just being positive.  It's about the REAL day to day live of someone suffering from fibromyalgia along with other health conditions.  I've been drowning lately friends.  Literally, drowning.  The pain.  The fatigue.  Feeling like my life isn't worth living anymore.

Every day, I try my hardest to put on a fake smile, and go about my day.  The truth is, that I've been sad.  So sad, that tears well my eyes almost daily.  I feel like I'm facing life alone.  Well, in reality, I am.  My younget daughter lives with me, but she works.  A lot.  She works 12 hour days, and the days she doesn't work she's with her boyfriend.  See. he's getting ready to leave for the Army ...his dad was career Navy, and he's going career Army ...so she's making the most of the time she has left with him before he leaves.  I don't blame her, I'd do the same in her shoes.  But that leaves me 100% alone all the time.

My husband left me a few months after my diagnosis with Fibro.  Said he couldn't deal with me being sick the rest of my life without a cure.  Fibro left my friends wondering why I'd cancel out on them.  They drifted away.  Eventually, I was left with nothing but my internet friends.  Fibro has robbed me of friends.  It's robbed me of a LIFE.  It's left me cold and isolated.  It's left me alone.  It stole my husband.  It stole my LIFE.

No matter how much I hurt, I had supper on the table for my husband when he'd walk in the door from work each day.  I loved him, and I loved my life.  If you go back in my blog, you'll see a post about the divorce rate in marriages of one who had a chronic illness.  You'll read my astonishment to that statistic. Just a few short weeks later, ...without going back and researching, I believe it was almost 2 weeks to the day, my husband left me and I became one of those statstics.  I couldn't believe it.  It was so surreal.

The saying that you went to a buffet to instead be handed a crap sandwich?  Yeah, that's how I feel.  I hurt every single day.  I emotionally hurt every single day.  I'm so mentally & physically tired each & every single day.  I'm not going to lie.  I wonder a lot of the time what my purpose is here on earth.  My kids are all grown.  They each have their own life now.  I sit alone 99% of the time.  No one needs me anymore.  So why am I still here?  WHAT is the purpose?  WHY do I have to hurt all the time?  Why can't I have someone who loves me? Someone who needs me as much as I need them? Why do I have to be in pain all the time? -REAL pain  ...the type of pain that most people couldn't tolerate for a day  .....let alone the rest of their life.

I'm sorry that I've let you all down.  I'm sorry that I haven't kept up with the blog like I should.  I never, ever wanted this blog to be the type that sugar coated anything.  I wanted to show the world how HARD it is to live trapped in a broken body.  So why haven't I blogged even though I feel like shit?  I don't know.  All I can say, is that I'm sorry and I'll try to do better from here on out.

Deep down I know, that even if this blog reaches ONE person that feels the way I do  ....or ONE person that doesn't live with this freaking monster of a disease & I can give them a glimpse of what it's like to be trapped in a broken body  ...that I've done what I've set out to do.  Even so, sometimes when you're feeling so alone & isolated, it's HARD to make yourself sit down and write.  I hope you all know that my lack of blogging doesn't mean that I don't care about you.  I hope you know that doesn't mean that I've given up HOPE of a cure being found.  I will never give up HOPE ...because if I gave up HOPE, then I'd be left with nothing.

If you're having a bad day   .....or week, or month  ...read this, please know you're not alone.  We're all in this together.  I may not have a lot to offer you, but I'm here.  I understand.

Friday, January 3, 2014

A New Year; New Hope

 
Well, 2014 is here.  I hear people say all the time "It's just another day" or "It's just another year, nothing to be excited over".  Well, it is something to be excited over, in my opinion.  Every new year, brings new hope that this will be the year that a cure is found.  At the very least, it brings hope that a new treatment that works for everyone is found. 
 
Each year, fibromyalgia and other chronic pain conditions gain more awareness.  I've said it from day one, but I'll say it again ...awareness ='s education ='s more donations for research, and research ='s a possible cure or new treatment plan.  Even a new treatment plan ='s hope for getting our lives back, and that's all that any of us really want, right? 
 
I've sat here the past two days, in a pain flare.  Mind-boggling-make-you-grouchy-curse-under-your-breath-makes-you-want-to-gouge-your-eyes-out-pain.  Not just a little sore & achy type of pain. I know that on this blogs facebook page that many are in this type of pain flare right now.  I think that all of this snow and the frigid temps are partly to blame for all of the flares right now.  This is no way to have to live.  -I'm using the word "live" loosely here, too.  Because really, how is being in pain every single day of your life, being so tired and fatigued that you can't even keep up with daily chores, living?  It isn't.  We're sustaining.  Sustaining our existence, and that's about it.
 
Almost two years ago, I was completely overwhelmed at the thought of diving into the blogging world, and the act of advocacy.  Thoughts crossed my mind such as "Who would be interested in what I have to say?  Who could I really help?  I don't have a medical degree nor do I have a degree in journalism.  I don't know anything about social media, and I barely know how to use my computer".  You know what though?  I was so sick of the pain and the fatigue, and the insomnia and brain fog.  I was depressed, and overwhelmed. 
 
Google had become my best friend.  I googled, and googled, and googled reading every blog I could find.  Most of them, wrote about fibromyalgia but then would add something along the lines of " ...but we won't let fibro define us" or "we're bigger than fibro" or some other peppy-I'm laughing-at-this-illness-and-won't-let-it-get-me-down-make-me-barf-type-of-crap.  Now, I'm all for positive thinking.  To know me in real life, you wouldn't believe the positive spin I put on my life.  You wouldn't even believe half of the crap I've been through, and I still maintain a positive attitude most of the time.  Heck, I was a high school cheerleader, after all.  But!  I just could not relate to what these other blogs were saying.  I'd come away from reading them, feeling even more sad and alone than before I read them.  How could they be so positive and upbeat all. the. time?  How?  People complain that there isn't enough research funding to unlock all of the mysteries that fibro holds.  Mysteries that could lead to a cure.  Well, if people think that fibro isn't a big deal; that fibro doesn't define a person's life, how can we expect people to donate for further research?  No, fibro is a big deal.  Fibro does define a person's life. 
 
Finally, I thought about one of my dad's favorite sayings growing up.  A quote from  David Glasgow Farragut that I actually used in a Voices Of Democracy speech contest when I was in high school.  "Damn the torpedoes.  Full steam ahead!".  If I felt alone, and sad, and depressed then someone else had to feel that way too, right?  A vigor ran through me.  I vowed to myself that even if one person read my blog, and I helped them to realize that someone else felt the same way they did, that it would all be worth it. 
 
Once I started the blog, and I realized that there actually were people out there that felt as crappy with fibro as I did, I started to get angry.  Angry that there were people out there making fibro look like it isn't a big deal.  Making it seem like "Oh, it sucks, but we'll be ok ...we're fighters!".  We most definitely are fighters; but we have to be or else we just wouldn't survive!  I was angry that the majority of the public; even a lot of doctors and people in the medical field, were so uneducated about how damn tough it is for us on a day to day basis.  Angry that people just don't "get it" when it comes to what fibro is really like for those of us that suffer.  That, is when I vowed not only to myself, but also publicly, that I will advocate for education and a cure until the day I die. 
 
At that point, the idea of my seminar was born.  I started gathering information and facts, and putting the seminar together.  My life-long goal, is to travel to every major city in the U.S. presenting this seminar.  Giving tips and lending support to those who suffer with this illness.  Educating those who do not suffer with it, as to the eye-opening realities of our day-to-day life.  Submitting proof that it's a real condition, with real life-altering consequences.  If people only read or hear about the positive stories that are shared, then why should they donate to research?  Life isn't so bad ...these people are managing their lives just fine.  No.  Just ...no.  The vast majority of us are not.  My mission is to show that research is needed.  A cure is desperately needed.  Hell, I'm a 43 year old woman, and I can't even support myself.  How sad is that?!  It sure isn't because I don't want to.  I hate ..no, despise the fact that I can't work a "real" job.  I hate that I can't just breeze through my housework and cook lavish meals.  I can't just jump in the car and go places and do things that my friends are doing.  My life doesn't work that way.  Because of fibro.  I'm not alone out there either.  It's time we find a cure or a solid treatment plan that will work for everyone.  We deserve to live a fulfilling life. 
 
I don't know when my dream of presenting seminars will come to life.  The old cliché of "nothing in life is free" is unfortunately true.  I need funding to be able to secure locations in which to hold the seminars, along with travel expenses and marketing.  After all, what good is a seminar if no one knows it's being held? 
 
Nineteen months ago I started a GoFundMe account, to try and generate the funds needed to get the seminars started.  In that nineteen months, the page has received $85 in donations.  Several of them from the same person, bless her heart.  She's a fellow blogger that also has fibro.  I've seen pages on that website, set up because the person is asking for money to pay their house payment.  Or because they want a new or bigger vehicle.  These pages actually receive thousands in donations.  What this proves to me, is exactly how bad this seminar is needed!  It proves to me that the vast majority of people just don't "get it" when it comes to fibro.  They have no idea how badly education is needed, and how desperate we all are for a cure.  All this does, is drive my passion for getting this off ground even deeper within my heart.  It may be another 19 months before I have the money needed to start the seminars.  It may be 38 months.  Regardless of how long it takes, this is something I will never give up on.  I care too much about my quality of life and my future.  I care too much about your quality of life and future!
 
As we start off 2014, I want to make sure that each and every one of you know how much you mean to me.  I truly care about every one of you, and value your readership more then you know.  I want you to know that I "get it", and I'm here for you.  I also want you to know, that I'll always educate and advocate for our future; our cure.  If you know of an individual, business, group, or organization that might be interested in donating to the seminar fund, please pass along this link to them.  http://www.gofundme.com/pc0hc  Let's go forth in 2014 hopeful that this will be our year.
 
Love and Gentle Butterfly Hugs,
-Amy

Saturday, June 1, 2013

Another Fibro Co-Conditon? ..Imagine That!


I shouldn't have been surprised.  I really shouldn't have.  It seems that every time I turn around, I find another disease that's linked to having Fibromyalgia.  After blood work in February, I was told that I was pre-diabetic.  To be honest, I didn't really think too much about it.  I kind of just shrugged and went on about my business.  I did cut down on sugar.  I started dieting April 25th.  I've dropped roughly 20 pounds in the past five weeks.  

I had blood work done again a couple of weeks ago.  I've now moved into the diabetic category.  My numbers aren't horrible, but they are over the threshold to where they're calling me diabetic.  To be honest, the number didn't really phase me.  The fact that it put me into the diabetic category didn't really phase me either.  For some reason, it didn't really sink in until I had my meeting with the dietitian a couple of days ago. When she told me my doctor office had called and wanted me to take a diabetes education class, and gave me a testing meter, and made me check my sugar in front of her, ....then gave me a couple 5-day menu samples, ....it all sunk in and started bothering me a bit.  



What does a type-A neurotic do when they find that they have a new disease and it's eating away at them?  They come home and play Dr. Google, of course.  They search, and research, and research some more until their brain goes into sensory overload.  Then, all it takes is a 17 year old child to pose the question "Mom?  So many other things are connected to fibromyalgia, is diabetes a co-condition of fibro too?" to kick off a new Google search researching if there's a correlation between fibromyalgia and type II diabetes.   

Again, I should not have been surprised when my research proved that there is a correlation to diabetes and fibromyalgia.  In fact, "diabetes and fibromyalgia occur together nearly four times more often then would be expected." (Fibromyalgia Pedia, 2011-2012)  A study in the journal Rheumatology International, in 2003, showed that fibromyalgia occurs in 15%-18% of patients with diabetes.  

I researched a little further, and found that the higher the blood sugar level, the more severe a person's fibromyalgia symptoms are.  Diabetes.UK.Co. has a section on Fibromyalgia, and says that they are linked conditions.  The conclusion of a study published by the NIH states: " Fibromyalgia is a common finding in patients with types 1 and 2 diabetes, and its prevalence could be related to control of the disease. As with other diabetes complications, FM might be prevented by improved control of blood glucose levels."  You can read this study HERE.

As you can imagine, I'm not excited about making all of the dietary changes involved in a diabetes diagnosis. I'm not excited about the other health risks and worries associated with having diabetes.  Just as I wasn't (and still am not) excited about everything that goes along with having fibromyalgia.  In general, I feel pretty pissed off about it all.  I'm a 42 year old woman, who should be around half her life span.  Yet I'm trapped in the body of a 70 or 80 year old.  How many new diagnoses will I have by the time I'm 50??  What kind of condition will my body be in by the time I'm 50?  I won't lie, thinking about this causes me great pain and anguish mentally.  I'm an only child with aged ailing parents, and I'm single.  I have four children, but they're grown now.  My youngest has her high school graduation ceremony tomorrow.  They're all moving on with their own lives.  I'm essentially on my own now, and will be for the rest of my life.  With all of these health issues, that scares me for many different reasons.  

Hope.  Oh how I hope for a cure to be found for fibromyalgia.  The thing is, the more reading I do, ...the more research I do, ....the more I look into grant and private sector research donation numbers, the more hope slowly slips away.  There just isn't enough money, for enough real research to happen, for a cure to be found soon.  That's why educating people about this illness is so very important.  If people doesn't understand what all it really entails ...and boy does it entail a lot, then people won't be motivated to demand the funds so desperately needed for research.  Of course, I shouldn't say that there won't be a cure found soon, because even with the menial research being done "anything's possible", as the saying says.  That's where hope comes into play again.


Friday, January 11, 2013

Do You Wish Your Family & Friends Would "Get It"?


Do you ever feel like your family and friends just don't "get it" when it comes to you and your health?  Is it hard for them to comprehend the type of chronic pain you deal with on a daily basis?  Then gather everyone around, and sign up for The Fibro Frog's very first webinar!  $25 per registration, and you can have all of your family friends there, gathered around the computer with you!  Please share this event throughout your social media sites!

Don't Miss This Event!


Grab Your Family and Friends, and crowd around your computer this weekend!  Not only is my seminar "Living With Chronic Pain - A Patient's View" beneficial for a person suffering from chronic pain, but it's just as beneficial, if not more so, to your friends, family, and healthcare workers that do NOT suffer from a chronic pain condition themselves.  

Like the photo above says, education equals our future.  If we don't educate the people who truly doesn't understand our day to day life, then we won't have any hope in the future!  Hope for understanding. Hope for happiness.  Hope for research.  Hope for a cure.  Hope for solid, universal treatment plans that works for all.  Hope to take our lives back from this monster that steals life as most people know it.  2013 - The Year Of Hope!

The webinar is just $25 per registration, and you can have as many people crowded into around you for the live webinar as you'd like.  I "hope" to see you there!  I "hope" you help me to help you, and to help educate those in your life that just quite can't "get it" without experiencing it for themselves.  Instructions for signing up can be found on the top tab named Chronic Pain Webinar and Seminar.


Sunday, December 2, 2012

EVERY Day Should Be An Awareness Day


As I sit here with a wet, gooey feeling on my mid-back from my pain patch, I started thinking about my personal facebook profile picture.  It's one of the "May 12 Fibromyalgia Awareness" photos that go around. Maybe I'm just grumpy tonight from being so tired (I couldn't fall asleep Friday night until after 7am Saturday morning).  Maybe it's because my arms, neck, and shoulders are aching just with minor typing tonight.  Probably  Possibly all of the above, but regardless it struck a nerve gave me pause for thought.  We're supposed to create enough awareness yeah, because that's a real possibility to do any good or bring about changes by making people "aware" one day out of the year?

I'm sorry, but it kind of makes me want to scream and cry, and kick, and throw myself on the ground in true temper tantrum fashion when I sit and really think about that tonight.  Before starting this post, even though I knew the answer, I still went to page after page googling "what is" ....Fibromyalgia, Lupus, RA, Ankylosing Spondylitis, Osteo Arthritis, CFS/ME, etc.  Why would I do this besides being completely crazy?  Just to look at what I already know.  "Although there is no cure at this time ....."

No cure "at this time".  Does that mean that there will be a cure in the future?  Will it be during my lifetime?  Well, I'll tell you my honest opinion.  Although I'm hopeful, realistically I really don't think there will be a cure in my lifetime.  I'm praying that a cure will be found during my daughter's lifetime.  The reason I'm not hopeful, is because there isn't enough advocacy.  There isn't enough awareness.  If you've been around my blog for awhile, you know that one of my key phrases is "without education there won't be change".

What do I mean by change?  You could say that I mean it in the same way as awareness.  My entire mission statement for The Fibro Frog could be summed up by the words on one of the awareness photos I made up.  You'll see it below:

I just think it's so silly to expect people, as in a lot of people, to become aware of how painful, debilitating, and real these conditions are by having separate one day awareness dates throughout the year.  According to the U.S. Census Bureau, as of July 2011, there's 311, 591,917 people in the United States.  Out of over 3 hundred MILLION people approximately 6 million people have Fibromyalgia, and all of the chronic pain illnesses together tally around 116 million people, that still leaves 195,591,917 people who doesn't have a clue what it really feels like to live with an illness that causes chronic pain.  You'll find the census bureau information that I used for this post, by clicking HERE.  That still leaves one heck of a lot of people that doesn't have any clue in the world how miserable our lives truly are have any idea how hard our day to day lives really are.

195,591,917 people that by no fault of their own, just can't grasp the type of pain we live with.  195,591,917 people that are still left to believe that the pain is "all in our heads", or that "Gee, my back, feet, and legs hurt after work so I do know what these people are going through and it isn't that bad.  They're obviously attention seekers".  We can't be mad at people for thinking these things.  As angry as I start to feel every time I read or hear of someone saying that Fibromyalgia isn't real, I have to calm myself down because it isn't there fault.  They truly have no idea of the scope of pain and fatigue that we endure every single day of our lives.  That's my fault.  Our fault.  

Some of you are probably starting to get completely a little miffed at me right now for putting the blame on us, aren't you.  Seriously though, unless we can make these people understand, they will never know what a day in our lives is truly like.  How do we do that?  By educating them.  By talking to them. By showing them proof from studies that these illnesses are real.  By giving them analogies of things that they can relate to.  For instance, using the analogy of when they've had the flu.  That really is one of the truest analogies out there.  



How can you start educating people?  Simply post the truth about how you feel on your face book page.  By writing and sending a bulk email with info, examples, study and research links in it.  By spreading the message about my "Living With Chronic Pain - A Patient's View" seminar.  By talking to your community leaders, pastors, lawmakers, doctors, clinics, college campuses about booking my seminar.  If people doesn't understand what it's truly like to live like this, then it's up to us to help them to understand.  If we ever hope to have a cure found (for whatever chronic pain/fatigue illness you may have), it's going to take pressure from multiple people to demand further research.  I go over the statistics of how much government money goes towards research for us, compared to the amount of government money that goes towards research other illnesses.  Now, I'm not being crass or cold hearted.  I've had people I love dearly that's passed away due to some of these other illnesses, but the distortion in the amount of research funds for these other illnesses, compared to what we get for fibromyalgia, was staggering to me.  I had someone say to me once "Well at least you won't die from what you have, like a person with cancer might".  Again, I'm not crass or cold hearted, I'm just throwing my honest opinion out there.  I'd much rather be diagnosed with some sort of heart condition, because they have treatments that can be tried ...medicine, surgeries, etc. that can possibly lead to the person being cured.  I've long and hard with this next one, and I still feel the same way; I'd rather be diagnosed with cancer.  Again, there's treatments and therapies and surgeries that can be tried an a lot of the time the person is cured.  Yes, a person goes through pain, tremendous pain, and sickness with cancer treatment. Still though, they have the hope that they'll achieve remission and be cured someday.  Did you know that in most of the auto-immune illnesses, a lot of people take some of the very same immune suppressants that is given to people with cancer?  It's true.  Yet even though they take meds and have infusions of the same meds cancer patients have, they don't have any hope that they'll be cured.  They live with the knowledge that they're going to live in perpetual pain every single day of their lives until they die.  Not only the pain, but the fatigue, the headaches, the nausea and sickness and depression that are co-morbidities of  Fibro, or Lupus, or RA, etc.  Co-morbidities such as ulcerative colitis, IBS, chrones disease, migraines, and on and on and on.  Real conditions that hurt.  Real conditions that make you sick.  Again, for me, I'd much rather have a diagnosis of something that could be fatal because not only is there hope of being cured, but regardless, I'd know one way or another that my pain would come to an end.  On days where my pain is incredibly bad and I've been stuck in a flare for days or weeks, I sit and think about it and I'd rather know I was going to die, then to know that I have somewhere around 40 more years to live in pain, sickness, and agony.  It feels as if I've been sentenced to a life of living in a slow, perpetual hell. 


The only hope I have; the only hope we have, is that we bring about awareness to enough people that understands what a crap sandwich we've been dealt in our lives.  Enough people that's willing to help us advocate and put pressure on lawmakers and congressmen to push for more funding for more research. I really hope that none of my opinions in this post have offended anyone as that wasn't my intent.  The statements and opinions that I've expressed are solely mine.  Because I feel this way, doesn't mean that someone else with the same condition as I have, feels this way too.  As my last blog post talked about though, the number one cause of death for people with fibromyalgia, is suicide.  It's just so daunting knowing that you don't even have a chance to be healthy again.  Knowing that you'll spend every day of the rest of your life sick, hurting, and depressed. I've always been honest with all of you on this blog, and I always will be. Some people may find that honesty offensive, and I realize this, but that's who I am. If I give people nothing else, I at least give them my honest thoughts and opinions.  All of this to say please, please don't just try to bring awareness about on May 12th of every year.  Advocate for awareness every day of every year.





Tuesday, October 23, 2012

Everything Hurts


Last night was rough pain wise and it's continued through the entire day and night tonight.  I can't hardly move.  When the pain is this bad, it starts to really get me down and make me feel depressed.  Even my head, upper legs, and the back of my arms hurt tonight, in addition to my every day pain of neck, shoulders, knees, lower back, and mid-back.  I'm so sick of hurting all the time.  I just wish that I could look and feel good for one single day ...and when that day arrived have the money to take advantage of it by going shopping, out to eat, then out to a movie or live performance or something.  I want to walk around, and laugh and have fun.  I want to go out and walk through parks, taking nature photos as I go.  I used to do this.  It would hurt me, but it was doable.  Now?  No way.  I used to take my camera pretty much anywhere I went.  Now, not only can't I stop along the side of a road to walk out in the middle of a field to take a photo I may want to take, but I can't even hold the camera up long enough to walk anywhere with it.  Well, I can hold it up, it just causes me extreme pain in my arms, neck and shoulders.  So therefore, I can't still do it.  Not enjoyably anyway.

I can't convey the excitement I'd feel when I would take photos.  The excitement of getting home and downloading them all, to see what natural beauty I had captured at that particular second in the universe.  That nano-second in time that could never, ever be reproduced.  The photo above is one of those nano-seconds that I captured.  The top of the cloud looks as if it's lined with silver.  Rays of golden light opening up out of the cloud and reaching towards the sky.  As if it's a tunnel of light to heaven.  All of the rays of gold to the right side of the photo.  Like rays of golden hope.  Hope, that if I keep talking; that if I keep writing; if I keep advocating for more research, that maybe, just maybe a cure or at least a concrete universal treatment plan may be found.  If not found in time for me to utilize it, then at least in time for my daughter or others younger then me, to take advantage of it.  

It really hurts my heart, that so many people (most people) just doesn't have a clue how bad this pain can be.  I call these people DHAC's, which stands for "doesn't have a clue".  Most DHAC's are well-meaning people and aren't trying to hurt us, or make us mad, they just honestly really DHAC.  I have a DHAC in my life.  She is the sweetest woman in her early 50's and she really cares about me.  She's pretty much the only adult IRL (in real life) friend that I have anymore, and I'm pretty sure I won't even have her for much longer.  At least once every week or two she'll call me up telling me that I need to get myself out of my house.  She'll tell me how I should be going to the gym to do cardio and weight lifting with her.  The best thing that she regurgitates at me at least once a week?  "Well, you know my BFF K. that I've had for 30 years.  She has fibro and she gets around so much better then you do.  You just need to snap out of it.".  OR....she tells me over and over how there's a 60 year old woman who works out at her gym who has Fibromyalgia so if she can do it, then I certainly should be able to do it too.

See, that's the funny thing about Fibromyalgia or Chronic Fatigue Syndrome, arthritis, even auto-immune diseases such as Lupus, RA, etc.  You can line 20 people (or 50, or a 100) up beside each other and you may not hit two people who have the exact same symptoms.  You may not hit two people who are affected the same way.  They'll all have varying degrees of pain.  Some people only have a few of the symptoms of fibro and others may be affected worse by their symptoms and pain levels.  Just as when what people call "the flu" (that is actually an intestinal virus) some people have a bad case of it and some people have a less severe case of it.  Unfortunately, I have a "bad case" of Fibromyalgia.  I have all the symptoms and co-conditions.  I have the acid reflux, I have the IBS, the Fibro Fog & memory loss, the insomnia, and on and on and on.  Does this well-meaning friend honestly think that I like not going out and doing things?  No, I don't.  I despise it.  You can't even begin to understand how bored and lonely and stir crazy I go.  Days like the last few though, I don't really have much of a choice.  I always have to use the chair arms to "push" myself out of my chair and yell "ow".  The last few days it's a double "ow" because the back of my arms hurt so badly too.  

My pain has been so bad for the last two days that I'm really not dealing with it well by tonight.  Not at all.  I'm starting to feel whiny, and I keep blinking back tears.  Just typing these words made me start feeling emotional again and I had to shove the tears away.  I seriously feel as if I'm losing my mind and going mad from the pain.  It isn't like I have a little pain.  I have pain.  -I had four children natural without pain meds.  I know what pain is, and I have real, debilitating, pain.  When I was first trying to come to grips with my illnesses, I kept asking "why me?".  "Why me God?  What have I done to deserve a life filled with pain every single day?".  I always felt that God wanted me to use my sicknesses to help others who are also sick.  I thought he wanted me to educate and advocate to fight for the rights of those of us afflicted.  I felt that he wanted me to bring awareness to the table, to advocate for more research for a cure.  Now?  I'm not so sure.  I feel that if I had been right, that God would've opened the doors for my chronic pain seminars.  Maybe it just isn't the right time yet?  I don't know.  All I do know is that's where my passion lays.  I also know that presenting chronic pain seminars is the only type of work I could possibly do at this point in my life.  Due to the fact that it isn't something I'd be doing every day, along with the fact that they only take a couple of hours, hours that I could alternate standing and sitting as needed while doing it, it's the only way I can fathom to do to support my daughter and myself.  I've always heard the saying "God helps those who help themselves".  I've tried every thing I can think of to try and help myself on opening the doors to public speaking and advocacy and it still hasn't panned out.  My birthday is November 18th, and I've posted everywhere that the only thing I want for my birthday this year, is to have enough money to present at least one chronic pain seminar.  God bless those who've donated to my chronic pain seminar fund on GoFundMe, but I've only raised $75 in the four months that I've been advocating and asking for donations.  -And you guys can't imagine how hard it was for me to make the page and ask in the first place.  I really don't think there's any way for me to hit my birthday goal of having the $75 raised up enough to hold at least one seminar.  I've said before that I'm not looking for a free handout.  I'm looking for people and/or businesses that believe in me and in what I'm trying to do.  I'm looking for the help of getting started.  After the first couple, then the seminars will start paying for themselves.

The grief wheel is a funny thing.  I'm not sure that you ever get out of it.  I'm beginning to think that it's something you just keep going around and around and around on until you die.  Every time I think I've finally come full circle with it, I find myself in the questioning and angry stage again.  Then we start all over.  I'm dizzy and sick of spinning around on this silly wheel.  Enough is enough.  Unfortunately though, since doctors and scientists doesn't have a cure, or even any single medicine that will take away my pain and my fatigue, I'm just stuck here going around and around and around.  No matter how hard I have to fight to believe and have hope, I will.  Hope that a cure will be found.  Hope that research will provide answers so that medicine that works will come to light.  Hope that a door will be opened for me, and my career in advocacy will take off.  I can't lose faith of my hope, because if I do then what will I have left?