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.

Entry Form For Christmas Giveaway Is Live!

Welcome to The Fibro Frog's 1st Annual Holiday Gift Guide and Countdown To Christmas Giveaway!  We had EIGHT Wonderful Companies Take Part In This Giveaway.  I Approached Companies That Had Products I Felt Was Beneficial For Those Who Suffer From Chronic Pain Illnesses.

Make Sure To Go To Previous Posts To Read About Each Company, And What They've Graciously Offered For This Giveaway!  A Quick Recap On The Prizes:

1. Mediflow Waterbase Pillow

2. Bed Lounge

3. Eat Smart Digital Scales

4. Maddy Moo Design Your Own Morgan Bag

5. Bag Of Hand Dipped Soap Petals

6. Fibro Awareness Bracelet

7. 26 Bird-E Towels

8. A Gift Of Cookies

ONE Winner Will Be Drawn On Christmas Day, and That Person Will Win All 8 Gifts! How Exciting Is That?!

Enter To Win Below!  Good Luck Everyone, and Thanks For Making The First Year Of The Fibro Frog Even More Successful Then I Could Have Ever Imagined.  Merry Christmas & Happy Holidays!

In The Terms & Conditions On The Bottom Of The RC, It States That This Giveaway Is For U.S. Resident's, Ages 18 and Over, Only.  I Figured I Better Put It Here Where It's More Visible Too.  -Also In The Terms & Conditions It States That The Fibro Frog, Facebook, Nor Rafflecopter Is Responsible For Prizes Being Shipped, Lost, or Damaged.  Each Item Will Be Shipped From The Company Directly To The Winner.

a Rafflecopter giveaway

Magic Christmas Dust

Compassion

The definition of compassion, according to the Merriam-Webster Online Dictionary (check it out HERE) is as follows: "sympathetic consciousness of others' distress together with a desire to alleviate it".

Why?  Why ...don't most people care about the level of pain that people with a chronic pain & fatigue illness feel?  Seriously.  People are so busy in their own lives, that they don't stop to really think about us.  If they do, they can't wrap their minds around it.  They think that we're just exaggerating.  Or that we're just lazy.  

Today, I had to have my daughter apply a Lidoderm patch on my lower back.  She also had to apply one to my middle back.  At the same time, I took 800mg of Ibuprofen along with 50mg of Tramadol, and 10mg's of Flexeril.  I still hurt so badly, that I had to go lay down in bed for awhile.  It felt as if I hadn't taken anything at all for the pain.  This is how my life is spent.  Hurting. Trying to alleviate the pain.  Being stuck either in my chair or in my bed.  Sometimes being stuck in a bathtub of hot water for an hour ...adding more straight hot water as it cools off. My entire life is spent like this.  Trying to live, by working around the pain.  Trying to plan activities of daily living, around the pain.  Trying to have some sort of quality of life.  Trying to fight back the depression that one feels, when they have to live their lives like this.  I have "live" in bold face, because if you really think about it, am I honestly "living" when this is my life?  The depression that one feels, knowing that they will have to live every day of the rest of their lives with this kind of pain.  In my case, I could be facing another 30-40 years, of constant pain.  To stop and think about having to feel like this for 30-40 more years seems surreal to me.  It seems undoable to me, quite frankly.

I desperately try to advocate for those with a chronic pain illness.  Not just those with Fibromyalgia like I have, or with RA like two out of three of my doctors believe I have, but for anyone who suffers from any type of chronic pain.  Pain is pain, no matter what the diagnosis is.  I feel compassion for anyone who has to live like I do.  I've always been brutally honest on this blog, and I intend to always be honest even though that isn't always painting a pretty picture.  So in all honesty, I fight so hard for awareness, advocacy, and research because I'm hoping that a breakthrough in research happens in my lifetime.  I'm hoping that by some miracle a cure may be found so I don't have to feel the pain anymore.  I'm hoping that I may regain some sort of quality of life before I die.  

When I've been stuck in the vicious cycle of a flare for awhile, it always runs me down.  It makes me sad, grouchy, depressed, on edge, touchy.  Most of you know that after my husband left me, I sat down and put together a seminar on living with chronic pain.  I've never been one to ask for help or charity.  Heck, when someone even brings me a gift for my birthday or Christmas I'm not sure how to act because even if it's something I absolutely love and I'm happy to get, I'm not used to getting things for myself.  Therefore it makes me feel awkward to accept gifts.  I eventually though, swallowed my pride and made a Go Fund Me account.  As embarrassing as it was for me, I shared the site and asked for donations.  Donations so that I could pay for conference rooms, advertising, and travel expenses to present my seminar.  Not only does the seminar give the person afflicted with a chronic pain illness numerous references, tips, and advice for coping with their pain, but it also gives them resources to share with their family and friends to help them understand what it's like to live every day like this.  It also educates those without a chronic pain illness, what it's like to be "us".  To be a chronic pain sufferer.  The seminar also opens people's eyes to the dismal amount of research that we have in this area, and why it's so important to advocate for more research.  Why we need a cure.

This is my "confused" frog face.  Of course, having fibro fog most of the time lends me to look confused a lot of the time, but tonight I'm putting it on because I just can't understand the lack of compassion.  The lack of compassion there is for those of us who are stuck in a life of hell on earth.  After spending 1/2 of my day in bed due to pain, and the other 1/2 sitting here in pain, I logged onto my email a bit ago.  I had my weekly newsletter from Go Fund Me.  Each week, they send one out telling of the great success stories they've had during the week, with donations.  I usually don't open them, but tonight I did.  I opened the email and the top story headline on it was this: 

The Clint Tarver Campaign Clint Tarver made headlines this week. After the Lansing, MI hot dog vendor had his equipment damage by rowdy protesters, America reacted with a ton of support. $33,461 raised by 1436 people in 2 days $33,461 raised in TWO days, by 1,436 people. Wow.  Tears sprung to my eyes.  That is one hell of a lot of money in only a two day time period.  Now, I am sorry that this hot dog vendor had his equipment damaged.  I'm also happy for him that's he's going to be able to replace his equipment because it was his job.  On the other hand though, I've raised $85 in the past six months by a total of four donors.  Now maybe I'm biased, but I feel that this proved to me how little compassion the general public feels for those of us who suffer with chronic pain & fatigue illnesses.  Someone may say "Yeah, but that was that guys job.  He probably has a family to support".  You know what?"  Presenting this chronic pain seminar is my job and I have a family to support as well.  I have to do something to try and support my daughter and myself.  The level of pain, fatigue, and insomnia that I suffer makes it near impossible for me to work a "real" job.  Believe me, I wish more then anything that I could just go get a job in a factory.  I'd enjoy the face to face interaction with other adults, and I need the money.  I really need the money.  The reality of it is though, it just isn't possible for me.  About 3 years ago I got a factory job through a temp service and I made it through 1/2 of the shift.  After 1/2 of the shift I limped to my car crying from the pain.  After sitting in the car for the 20 minute drive home I could hardly pry myself out of it to walk into my house.  I was so stiff and hurt so bad.  Yet this hot dog vendor obviously can work any job so even though he wanted to be a hot dog vendor, he could've went out and found any other type of job to support himself while building the money up to replace his equipment.  You know that my donation page won't even show up in the site's search results?  You have to have had at least $100 in donations before they'll add you into their search results for the different catagories.  I just don't understand how 1,436 people can be compassionate enough to donate over $33,000 in TWO days to replace hot dog equipment, but can't be passionate enough to give a crap about the pain we're going to be stuck in, until the day we die.  As I have previously blogged, the number one cause of death for those with fibromyalgia is suicide.  As much as I'd like to act shocked and offended over this statistic, I can't.  I can so totally understand the frame of mind these people are in when they commit suicide.  The depression.  The physical pain and mental exhaustion and depression.  Desperation. I "get" it.  I know why they want out.  A person deals with as much as they can, for as long as they can. This is why it's so important to educate as many people in the U.S. as we can, about what our lives are really like.  This is why I feel the desperation to conduct my seminar.  If we want any type of cure in our lifetime, then we need to advocate for a cure.   Days like today and tonight, I feel like just crumbling and forgetting about advocating.  Forget about the blog, and the facebook page.  I feel like I'm putting all of what little energy I have, into fighting an uphill battle and that I'll never reach the top of that mountain.  Every time though, I do keep going.  I always will keep going because if I don't, then who will?  Fighting for education and advocacy is the only thing that spurs me onward and keeps me going.  It's the only thing that gives me hope.  Hope that one day people will feel compassion for "us".  Hope that a cure will be found.  Hope, that someday soon I'll actually have a good quality of life again.  Compassion.  Such a simple word, but also such an important word.

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.

I'm A Real Person, With Real Illnesses And I Extend A Challenge To You

As I opened my eyes this morning, I could tell that it was going to be an "off" day.  The feeling that I was awakening after being hit by a Mack truck wouldn't shake.  Last night, everything hurt from my head down to my big toe.  You're probably asking yourself "her big TOE hurt?!".  Yep, even my big toe hurt as silly as that sounds.  

Today, my head hurts and my nose is stuffy.  Ultimately, since I get sick if I even pass someone in a grocery store that sneezes or coughs, I'm sure I'm coming down with a cold.  I feel sad and depressed today.  I just get so tired or never feeling good.  I'm sick and tired, of being sick and tired.  

Feelings of guilt keep me from posting a lot of the time when I don't feel good.  My oldest daughter who's 23 and a graduate student in both developmental and international economics at the University of Denver, gently reminds me every now and then, that I need to conduct myself as a professional.  She knows my hopes and dreams of presenting my seminar and being a speaker at conventions.  She knows that I'm passionate about activism and research to find a treatment plan or a cure.  If I want to be booked as a professional, then I need to act professional right?  Professionals don't go online and complain about their every day mundane aches and pains.

Nikki is one of the toughest people I've ever known.  I'm not just saying that because she's my daughter.  If you met her now, you'd never have a clue what she's been through to get to where she's at.  The amount of tenacity that this young lady possesses is unreal.  Coming from an extremely modest background, ok I'll be completely honest: a poor background, she got a job at 16 years old and has never been without one since.  Sometimes more then one job, all while going to school.  Both high school and college.  She's paid her own way all through college while carrying an insane amount of full-time college credits and still making all A's.  I haven't paid for so much as one single book, let alone anything else she's needed.  Not because I didn't want to, but because I haven't been able to afford to. Researching and finding the best college for what she wanted to do with her life, she switched from living at home and attending our local college of Bowling Green State University, to packing up and jumping on a plane to start a new life in Denver, CO.  She switched after her sophomore year.  She made new friends, found new jobs, and met new people.  Nikki has met some of the most influential people that we have in the U.S.  She's been to grand benefits where she's met and spoke with people such as the founder of AOL, among many others.  She doesn't complain about anything.  She knows what she needs to do, and she gets it done.  Sometimes putting in 14-16 hour days or more, without complaint.

You're probably asking yourself right about now, why I just told you all of this about my daughter.  What does it have to do with me feeling like total poo today?  Well, it has a lot to do with it.  If Nichole says that I need to conduct myself in a professional manner, then I tend to believe her.  I feel guilty complaining because for one, it isn't professional.  For two, how can I complain when she works so very hard, supports herself while attending an expensive college, and she never complains?  Sick or not, she goes to classes and completes her jobs. 

A very old friend that I think a lot of, sent me a facebook message this morning.  He simply said "I feel that sometimes you're too hard on yourself.  Give yourself a break".  You know what?  He's right.  I am too hard on myself sometimes.  Thoughts about these two sentences, have plagued me all day.  Sure, no one wants to hear someone gripe and complain constantly, but if I really feel terrible, then it's ok to admit that.  As much as I want to be a professional, I'm not at this time.  Even if I achieve my dreams and have seminars scheduled every weekend of every month it still will come down to this: A public speaker or not, I'm a human being first.  A real person.  Unfortunately, a real person who has real illnesses.  Illnesses in which there isn't a cure, and not even solid treatment plans that will help.  Illnesses that cause depression. Illnesses like some of you, deal with every day too.

If you're reading this blog entry and you don't suffer from a neuro-immune disorder, or you don't suffer from an auto-immune disorder like I do, then you're probably not going to be able to fully comprehend what it's like to be stuck in a body that's always sick or to have a mind where you'll be right in the middle of speaking, and forget what you were trying to say or even what you were thinking about.  

One of the best analogies I've read, is in a pamphlet put out by the American Rheumatology Association.  It compares Fibromyalgia to having the flu.  Think back to the last time you had the flu.  Do you remember how tired and physically drained you were?  Do you remember how sore your skin was?  How about the sore, aching muscles?  Sometimes when you'd move, you'd get sharp pains.  Your head hurt, even your hair sometimes felt like it was hurting.  Take all of that and add in joints that swell and hurt to the point that you have trouble standing up from a seated position and hurts enough that you audibly say "ow" most every time you go to rise. Although my illnesses doesn't make you run a high fever like you do with the flu, you do run frequent low-grade fevers.  Now, I seriously want you to think about everything in this paragraph.  Then, I'd like to you think about the fact that you're going to have to live every day of your life feeling like this.   Do you know what the leading cause of death among fibromyalgia patients is?  It's suicide.  Women with fibromyalgia have a ten times higher rate of suicide then the general public.  These are people who didn't have any kind of mental health problems before contracting fibromyalgia.  Women with fibromyalgia also have a higher death rate from liver disease and stroke, then women without fibromyalgia.  There hasn't been enough concentrated research though, to find out why women with fibromyalgia have a higher death rate from liver disease and stroke so the correlation to fibromyalgia hasn't been figured out yet. Just one of the many reasons more research is needed.  If you're interested in reading about the study that was conducted to bring about these statements, you can click HERE.

If you'd like to hear a speaker that suffers every day like you do, and "get's it" then contact me and we'll talk.  I'm not a doctor, nor a researcher; I don't have any fancy initials of any kind behind my name.  What I do have though, is first hand experience and knowledge about what people like me, people like us, go through on a daily basis, just to survive.  This seminar will help those who suffer, to see they aren't alone.  It gives some survival tips and lists resources.  It also gives the person suffering the ability to help those around them, to understand what it's like to be sick like this and help them understand.  For those who attend that doesn't suffer, they'll be offered the proof to help dispel untrue myths about these illnesses.  It will provide information on recent studies.  It'll help them to be aware and hopefully instill some compassion in them, for those who suffer.  It also talks about how little research there is, and how important future research is, and why it's so important. Whether a sufferer or a community member; a lawmaker or in the medical field, this seminar will help you to understand the truth of these illnesses that cause fatigue and chronic pain. 

If you think about the paragraph previously stated, giving the analogy of having the flu every day for the rest of your life, hopefully you'll understand how important this seminar is.  How important future research is, for those of us who suffer.  If you have the understanding and compassion, I'm extending a challenge to you this holiday season.  I challenge you to give up a specialty coffee or two each week, and instead donate that money to my fundraiser.  Help me to help not only myself, but all of the others that also are living their lives one day at a time to make it through.  You can make a secure donation, on my GoFundMe page.  The link to it is on the right hand sidebar of my blog, but I'll also list a link to it as well: Donation Page.

Another Year Older

Today is my birthday.  I'm 42 years old today, yet I feel like I'm at least 72 years old.  I awoke to sharp stabbing pains in my lower stomach, thanks to IBS.   I thought I may pass out from the sharp pain.  I have a few times in the past.  Waking with the pain today has left me feeling exhausted and sad, and I guess I'd have to say kind of hopeless.  I don't know how else to describe it.  I'm weak and I'm shaky.  I just feel kind of completely defeated today.

I so badly had hoped for enough money by now to present a seminar.  The lack of funding help just proves to me how much these seminars are truly needed.  If every day people had even an inkling of how much real, physical pain people like me live with, they'd give up a large coffee from a specialty shop to make even a $5 donation.  People that aren't suffering though, just don't get it.  I can't be mad at people for not understanding how important these seminars are, and how important it is to bring awareness for more research, because if I wasn't afflicted myself, I wouldn't get it either.

I sit around, and chide myself about the fact that I'm not just independently wealthy.  If I was, then I'd never ask for a drop of help.  I'd fly across the country presenting one seminar after another, and making donations to research myself.  Again, I have no one to blame except for myself that I'm not independently wealthy.  I come from a middle class family, and grew up with my parents always telling me that I could be and do anything in life that I wanted to.  I could have gone to college and made something of myself.  Instead, I chose to graduate a year early from high school, so that I could get married.  I was still 17 when I married.  Five months later, I found myself pregnant with my first child, Nichole.

Nichole is making the life for herself, that I wish I'd have been smart enough to make for myself.  She's now in the graduate program at DU, and is going to continue on her education to get her PhD.  She'd posted a status on facebook today, that she'd received a copy of a final report that she helped to complete the research on.  She said seeing her name as a research contributor to this report, alongside two top PhD economists, reminded her why she's put in so much work.  She also has landed a job while she's in grad school as a portfolio manager for GSA, starting out at $50,000 a year.  -Not too shabby for still being in school.  This doesn't even touch on the fact that she's also a teachers assistant in the economics department at DU and even has her own office and office hours on campus.

It's too late for me to look back and see what I should have done in my life when I was young enough to grab the world by the horns.  That won't help me a bit here in today.  At this point, all I can do is take a deep breath, look forward, and keep taking baby steps until I get to where I want to go.  Nichole is my inspiration in all of this.  Like I'd said, I was raised in a middle class family, but where I didn't get a college education, and neither did Nikki's father, she was raised in poverty.  The fact that she hasn't let that stop her, she's worked and put herself through college and now grad school, is a huge inspiration to me.  If my own daughter can beat the odds, and obtain exactly what she wants out of life, then how in the world can I just lay down and quit?  I can't.  I may never, ever, reach my goal.  I may not be a big activist and advocate, that people recognize my name.  I may never be able to make a living as an advocate and motivational speaker.  What I will promise you though, is that I won't ever stop trying.  Sure, I have days where I feel like giving up.  I have days where I tell myself that I was dumb to even try and think I could do this.  I allow myself to feel sad for a time, then I pull myself up again by the boot straps, and I send out another email.  I make another awareness photo and share it.  I come make a post on this blog.

Even if I never, ever reach my goal, I will die knowing that I did the best I could and that I never gave up.  It's embarrassing to me, to ask for donations.  That's one of the reasons I made one of my photos/sayings into a key chain and am holding a fundraiser selling the key chains.  It makes me feel a tad bit better knowing that someone is going to get something tangible out of their donation to my cause.  Embarrassed or not though, I know that I'm not asking and doing this just for myself.  I'm also doing it for the approximate 116 million of us that suffer from some sort of chronic pain condition here in the U.S.  With that said, my key chain fundraiser is going on through November 24th.  If you'd share about it through your social media networks, I'd be forever grateful.  I'm trying so hard to get at least 50 of them ordered.  With an order of 50, I get the back side of the key chains printed for free.  The link to the fundraiser is here: Key Chain Fundraiser.  If you'd rather make a straight up donation, the link to my GoFundMe account is here: GoFundMe Account.

Here's a photo of my inspiration to succeed.  My beautiful, successful daughter, Nikki.

Support Those With Chronic Pain Illnesses

Don't forget that I have a fundraising event going on through November 24th.  The sell of the key chains will help fund my seminar Living With Chronic Pain - A Patients View.  Let's help out our fellow chronic pain sufferers by ordering a key chain and sharing the event through your social media sites.  The seminar isn't just for people with fibromyalgia, it's for anyone who suffers from any sort of chronic pain illness.  It gives the sufferer tips and advice, along with ideas on how to make their family and friends, and community, understand what it's truly like to live their lives in pain every day.  It dispels myths, gives statistics, lists resources, and addresses family and community that doesn't understand what we go through.  This seminar is really geared towards not only the sufferer, but also to people who do not suffer.  It's an overall well-rounded seminar that's beneficial for anyone, whoever they may be.  Also, a person doesn't have to be a chronic pain sufferer to order a key chain.  By ordering one, you're showing support for those of us who do, and helping to bring about awareness by using your key chain.  You'll find the fundraiser on facebook as a public event.  Please check it out, and share it!  To access the fundraiser, click HERE.  Thanks for your support, there's approximately 116 MILLION people who suffer from some sort of chronic pain illness in the U.S. that thank you!

The Definition Of Insanity

The definition of insanity is doing the same thing over and over and expecting different results.  I, on the other hand, called doing the same thing over and over and expecting different results, hope.  I kept posting and emailing companies, looking for either help fundraising to pay for chronic pain seminars, or looking for a church, business, place, etc. to at least donate space to me to use for a chronic pain seminar.  It was so very hard for me to even make a fundraising page.  I felt embarrassed and ashamed that I couldn't just do it on my own.  I've never had much through my adult years, so it makes me feel funny to accept a "gift" (donation) from someone.  I was grateful for each and every one, but it still made me feel funny ...and bad, to accept it. I've also been a very strong-willed person all of my life, so to accept that I "do" need help, was hard for me. Regardless of how it made me feel, I went ahead and bit it, and made the page.  Even though I kept getting "no's", I still kept emailing.  Even though I'd ask for others to please share the fundraising link throughout their media sites and only a small handful would, I kept asking.  Although I knew the definition of sanity was doing the same thing over and over and expecting different results, I still plugged along.  I kept telling myself that phrase didn't apply in this situation.  If I asked enough people to either donate or share the page, that eventually it'd pay off.  See, I'd always been raised believing that a person could achieve anything in life that they want to achieve, as long as they worked hard enough at it.  I've also raised my own kids to believe the same thing.  

I can't begin to tell you how embarrassed I've been, practically begging people to help me.  For a long time, I was able to ignore it, tell myself that I knew this wouldn't be easy from the start, and I could keep swallowing my embarrassment and moving forward.  I just can't do it anymore.  I've finally broke, and realized that doing the same thing over and over and expecting different results really is the definition of insanity.  All along I'd maintained that I wasn't just trying to do this for me, I was trying to do it for the approximately 116 million other people in the U.S. who suffers from chronic pain, as well as for myself.  Late last night, it hit me that where I'm not getting anywhere with this, that maybe educating people so that they'll understand what we go through, and advocating for more research to find a potential cure or treatment plan that allows us to have a half-way normal life, may not be important to very many people besides myself.  If it was, I'd think that I would've gotten some help along the way.  Now, I completely understand that the economy isn't good right now, and that people have tight budgets and may not be able to make cash donations at this time.  Believe me, I truly do get that because that's where I'm at myself right now.  But it's free; it doesn't cost a single penny, for people to share my mission on their facebook page, on their blogs, on their twitter accounts pinterest, etc.  My thoughts were along the lines that even if the people I reached out to couldn't make a cash donation, that if they shared the message themselves too, that it'd reach enough people that some may be in the position to make a donation.  

There are quite a few things I'm trying to work through right now.  I'm not embarrassed to admit that I have the co-morbidity of depression secondary to my Fibromyalgia.  When my marriage first ended, I finally had to go on medication for my depression.  It really helped me a lot.  I think that I may need a med change, or my dosage upped, because I'm again finding myself feeling sad and hopeless more days then not.  I think a lot of it has to do with the upcoming holidays.  Being as sick as I am (today I can't hardly type due to the stiffness and swelling in my fingers, for instance), not being able to work a real job due to my pain, stiffness, and depression, not receiving any child support or alimony, has me absolutely dreading Christmas.  Christmas has always been my favorite holiday of the year.  The absolute joy and pleasure I'd see on my families faces when they'd open their gifts, brought me pure joy.  Even though presents may be few throughout the year, I'd completely spoil my kids at Christmas time.  I absolutely loved seeing mountains of pretty, wrapped gifts under our tree.  For myself, the only gifts I'd usually get was from my parents.  -Again, that was fine with me because I feel awkward when people give me things anyway.  My joy, was in picking out, wrapping, and watching my family open what I'd bought for them.  Long story short, I've lost my joy at this time.  I've lost my hope.  Not only was the seminar important for me personally due to my health, but it also was important for me, to do as a career.  To be able to bring in money that's desperately needed for my bills, for my family, and for the holidays. 

Right now, I feel ashamed of myself that I can't work a "real" job.  I feel ashamed that I'm not able to provide the things for my daughter that she deserves in her senior year of high school.  I feel ashamed that I struggle so much to pay my bills.  I feel sad and ashamed that I actually pretty much was begging people to to help me get the seminar going.  I can't keep feeling like this.  I have to concede to the fact that maybe chronic pain seminars, and advocacy and research, may not be as important to others as it is for me.  -And that's ok, because however someone with a chronic pain and fatigue illness feels, is valid.  There is a lady that's not only a bloggy friend, but she's also a fibro sister.  This woman has gone above and beyond, trying to help me build this page and my facebook page, along with trying her very best to help me get the seminar going.  She's posted and posted asking for help, and she's made several donations to the fundraising page.  Every time I post asking for people to share about me and my mission, she does.  It's to the point that I even feel guilty for that, because she's put so much work, time, and money into helping me.  I'm going to leave my fundraising page up and if someone runs across it and wants to make a donation or wants to share it that's great and would be very much appreciated, but I'll no longer beg for help with it.  Begging and still not getting anywhere is completely demoralizing to me, and I just can't do it anymore.  It makes me feel ashamed of myself that I can't just do it on my own.  Therefore, I will wait until I can do it myself.  Hopefully that time will be soon, but if it isn't, then it isn't.  I'm not going to keep worrying about it.  

The quote above, is how I was looking at things.  I thought that if all of us sufferers banned together, that together we could bring about a change.  A change in the way other people look at us.  A change in the way that even those in the medical field look at us and treat us.  I am so tired of DHAC's (people who doesn't have a clue) looking at me and telling me that I'm just too lazy to work.  That it's my fault that my daughter is going without stuff that she should have.  It's my fault that I'm so poor at this particular time.  I thought with so many of us, that we could demand change and research.  To be completely honest, I still feel this way.  I'm just not strong enough right now to keep trying.  I just can't take more rejection right now.  Hopefully once the holidays pass, I won't have so much on my mind and I'll jump right back in again asking for you all to help me start advocating again.  Maybe I'll get lucky in the mean time and the opportunity to hold a seminar will drop into my lap. Regardless, I want to thank everyone who reads my blog and facebook page, for sticking things out with me.  I'll do anything I possibly can to be there for you guys.  I'm just praying for a much better year in 2013.  For all of us.

One Final Push

My birthday is in 12 days, November 18th, and I had been hoping to have raised enough funds to hold at least ONE chronic pain seminar by then.  It's looking pretty dismal at this point, but I wanted to make one final push to try and still hit my goal.  I realize that the economy isn't the greatest, and that the holidays are quickly approaching, so if you can't make a financial contribution I completely understand.  What I'm asking for though, is if you aren't able to make a donation, would you take just a couple of minutes out of your day, to share my fundraising page or else this blog post, throughout your media sites?  If even 50 people shared, and asked their friends/family to also reshare, the final reach of what I'm trying to do could be phenomenal! I'm not just trying to advocate and educate just for myself, and I'm doing it for myself and the approximately 116 MILLION people in the U.S. that suffer from a chronic pain condition.  It would mean so very much to me, if you all would share and ask for reshares.  It doesn't cost you anything, and it only takes a couple of minutes.  Please help my voice to be heard.  Although my fundraising link is on the right hand side of the homepage on my blog, here's also a direct link to it as well: Click Here For Fundraising Page  A huge "thanks" and a gentle butterfly hug to those who are willing to help me get the word out about my birthday goal.

$1 Challenge

Ok everyone, I'm pushing a $1 Challenge until my birthday, November 18th, in hopes that I have enough in donations by then to rent at least ONE conference room and pay for the advertising to hold at least one chronic pain seminar! That's all I want for my birthday ...to be able to educate and advocate for those of us who live with chronic pain and/or invisible illness. Even if you yourself can't donate $1, would you please share the link on your social media sites for others to see? If you're a blogger, would you extend this challenge to your readers? It isn't about the amount of the donation, it's about the volume of donations. If enough people see it and donate even $1, then it will add up quickly! Here's the link: 
GoFundMe Donation Page Please help me to help all of us!  Clicking the butterfly will also take you to the donation page!

Quality VS Quantity Of Life

Last night, I went with my kids and their friends to the little village that's 5 miles away from us.  They have a little one day festival type thing, then end the night with fireworks.  Since I wasn't able to watch fireworks on the 4th of July, I was excited to go.

Every year I take photos of the fireworks but this year, I decided to try and video them too.  My camera is a Canon T3i and it's supposed to have professional quality HD video built in.  I'd never tried using it before though, so I was fumbling around in the dark trying to figure it out lol.  I couldn't believe though, how much it hurt me to video it.  I had to tape a little, then shut the video off, then tape a little.  A minute or so into the third taping, I had to ask my daughter to take it.  I was left with horrible neck, shoulder and arm pain, and it put a charley horse in the middle of my back.  Even with the first taping I did, I missed having it centered and getting it all in, due to the pain it was causing me to hold the camera up aimed at the sky.

I was going to upload the first clip, to show how shaky I was trying to video right from the beginning, but for some reason I couldn't get it to upload to blogger.  It keeps telling me there was a problem uploading the video, but it doesn't tell me what the problem is lol. I will insert some photos of fireworks instead I guess.  I had taken some before I got the idea to try and use my video for the first time.

We all know that doing simple household tasks can be hard or even not doable at all sometimes, but it's the simple, little things, like trying to shoot a video with a camera that always throws me for a loop.  Things that people take for granted and don't even think about.  I never would've guessed how much it would hurt me to take a video.  My neck and arms still hurt this afternoon from it.  

This is no way to have to live.  Fibromyalgia (or insert Lupus, Arthritis, CFS/ME, etc) may not be fatal, but it sure stills your quality of life.  I've always believed that quality is better then quantity, and that holds true in my health and my life.  Not being able to bend over and pick something up from the floor, or run a sweeper. Being in tears after fixing a meal...sometimes in tears after just frying an egg, having to take breaks to unload and reload a dishwasher....  I could go on and on.  That's not quality, that's quantity.  I have a friend that wants my daughter, her boyfriend, and I to go to the zoo with him.  He told me to pick a day that I wouldn't be in a lot of pain.  I rolled my eyes and told my daughter and her boyfriend that this friend of mine needs to be the first one signing up for my seminar to learn the truth about living with chronic pain.  Oh how I wish I could know what day would be better then another for pain.  Unfortunately, it just doesn't work that way.  

I'm asking again, for you all to please share this blog with your friends and family.  If you're a blogger yourself, please share this blog with your readers.  It's so very important to me, to educate people about life with an invisible illness that causes chronic pain.  Unless you live with it yourself, it's really hard to grasp what life is like, living this way.  Someone once said to me "At least you don't have cancer.  That could kill you and with this you won't die.".  I paused, then responded with "You're right.  It won't kill me.  Have you thought about the fact though, that people with cancer have hope?  There are solid treatment plans mapped out for all types of cancer.  A person with cancer, has hope of one day being cured.  They have hope of their pain and sickness ending.  Even if they do die, at least they aren't living for years and years in sickness and in pain.  One way or another, their pain ends.  I don't have that hope.  I know that I will have to live every day of my life hurting and sick.  If the quality of my life is going to be so limited and so painful, then do I really want to live until I'm 70? 80? 90 years old?".  I also went on to say that I know what a horrible beast cancer is, and my heart breaks for those that have to go through cancer.  Please don't think I'm an insensitive jerk because I'm not.  In fact, had I finished nursing school, I wanted to work in pediatric oncology.  This is just a way to get people to stop and think about what invisible illness and chronic pain sufferers go through.   I'm really hoping for a packed house for my seminar, because people really need to understand and learn.  They really need to stop and think.  Again, please share this site or my facebook page, and the flyer for my seminar.  I thank you all in advance!