That Feeling Of Helplessness

That photo quote above, pretty much says it all right now.  I feel like whatever I do doesn't matter.  I feel like no matter how hard I try, I'm going to be stuck in this rut for the rest of my life.  I'm feeling completely overwhelmed.  

Every time I hear, or read, someone say "If you don't like your life, change it instead of complaining about it" I think I die a little more inside.  Way easier said, than done buddy.  Trust me.  

I didn't ask to get sick.  I never in my life wished that I'd get sick.  No matter how hard I try, I can't change it though.  I am sick, and there isn't a cure.  There isn't even a precious magic pill to make me feel better. 

I've tried to change that.  I've tried to educate and advocate for research funding so that maybe someday there will be a cure or a magic pill.  It's hard to get people to listen though.  When someone does listen, they still just can't grasp the concept of how truly horrific it is to have to live like this.

I can't make my own children understand, so how am I going to make a stranger understand?  I thought my oldest son understood, until today.  We were talking through Facebook messaging and he said "Your life is awesome".  I said "Hmm  ...I'm single without any hope to meet a man because who wants someone that's sick ..and I hardly ever leave the house to meet anyone.  I hardly sleep and when I do I feel like I haven't.  I hurt so bad that sometimes I cry.  I live off $700 a month because I can't work.  My house is falling apart.  Literally falling apart, 1/4 of the dining room ceiling fell in the other day and I can't afford to fix it.  Yep, I see what you mean.  My life is awesome".  He then replied with "Yeah but you don't have to work or go to school.  Awesome".  I was starting to get mad.  Frustrated.  Whatever you wanna call it.  I replied with "I wish I could work. I truly do. You don't have a clue how lonely my world is. I'd love to be able to make money so I could go do things, and I'd love the social interaction of being around other adults every day. I'd love to get out of the house and have somewhere to go. To be able to afford the gas to go, and feel good enough to go!

The next thing he said was "I hate it.  I just wanna sit in bed all day every day and never leave".  I told him "If you had to do that ...if it wasn't a choice ...you'd feel differently.  Believe me, it gets real old, real quick".

At this point, it slapped me in the face that even my own grown son is a DHAC (a person that doesn't have a clue).  It made tears spring to my eyes.  Then again, most things have been doing that to me lately. 

To his credit, I know he's tired and frustrated right now.  He's working 60 hours a week and going to college full time.  He's been averaging about 4 hours of sleep a day.  But man, if only my body would allow me to work 60 hours a week and go to school too.  What an awesome feeling of accomplishment and self-pride it would bring.  

I've tried getting local media outlets to listen and run a story.  I don't even receive a response.  For darn close to 2.5 years I've tried to get funding to start giving seminars on living with chronic pain.  That's failed miserably.  I've tried finding free venues to hold them so that I wouldn't need so much funding.  That too has failed.

I don't like ...no wait, I hate being overweight and I've tried to change that.  To my own credit, I have lost a bunch of weight.  51 pounds.  But I can't seem to lose any more and get to a healthy weight, because all of the stupid meds I take, make you gain weight.  You know, those meds that all of the doctors and commercials hail to be the special magic pill that will give me back my life.  The commercials flat out LIE.  People listen to them though ...when they don't want to listen to us when we try to tell them the truth of what our lives are really like.

If I was ever able to start the seminars on a regular basis, then my money problems would be gone, too.  I'd be educating people, advocating for all of us with chronic pain, plugging for research donations, and making a living for myself.  Sounds like a win-win to me.  I don't understand why society doesn't think so lol.  

The point is, I don't like my life, and I've tried to change it to no avail.  I've tried hard.  So, so hard.  All I'm left with, is the feeling of helplessness.  Feeling like whatever I do, doesn't matter.  I won't quit though.  If I have anything at all lef in this miserable life of mine, it's hope.  I'm hanging on by a thread right now, and if I give up hope, then that thread will break and I'll fall to eternity.  I've been a stubborn, strong-willed person my entire life.  Right now, I'm thankful for that.  I'm determined.  Determined to somehow, someway, turn this painful, sleep deprived, miserable life of mine into something good.  To turn the lives of all chronic pain/fatigue sufferers into something good.  

There is a difference folks, between surviving life and living it.  Right now I'm surviving.  Someday though, I'm going to live.  Someday soon. 

Really Society? I'm Outraged

I just saw a story in my facebook feed from one of my local tv stations.  The article was about a man from Ohio that started a campaign on a crowd funding site as a joke, to raise $10 .....yes, 10 measly dollars, to buy the ingredients to make potato salad.  He ended up raising over $55,000!!  Are you kidding me?!  Over $55,000, because he wanted to make a batch of potato salad.

28 months ago, I started a campaign on a crowd funding site (GoFundMe) to try and raise $5,000 to print up materials, pay for advertising, pay for location rental, and for travel expenses, to get my seminar on living with chronic pain up and running.  Guess how much I've raised in two years and four months time?  $90.  No, not $90,000.  Not even $900.  Just ....$90.00.

According to article when funds started rolling in, he promised he'd have a big party.  So, now he's going to hold PotatoStock 2014 in downtown Columbus, OH.  But, how much of that $55,00 is even being used towards it because the article goes on to say that the Idaho Potato Commission and corporate sponsors have donated supplies for him and volunteers to whip up 300 pounds of potato salad for the event.  The event is going to feature bands, food trucks, and beer vendors.  Usually for something like this the bands donate their time, and the food trucks and beer vendors pay for a spot to set up.  To give a little credit, the article says the man used some of the money raised to aid charities that fight hunger and homelessness.  Some of the money?  How much of the money?

Whether $1 or $10,000 was used to aid some charities isn't the point I'm stumbling on though.  It's the messed up way that people, the people donating to the crowd funding campaign in the first place, think.  Essentially, this guy was asking for $10 to buy some potatoes, mayo, and onions.  Once donations started coming in he promised a party.  People went wild and donated over $55,000 so a party could be held.  I ask for $5,000 to try and help people live a better quality of life, to educate those that don't know what it's really like to live with a chronic pain illness so that hopefully we'll get enough exposure out there to aid in further research to find a cure ...or hell, I'd even take a treatment plan that actually works, and works for everybody that has Fibromyalgia, and society can donate $90 in almost 2.5 years.  What's more important to society?  Having a party, or helping to improve the quality of a persons life?  Obviously, the party wins.

Call me jealous, or spiteful, or whatever you may but I'm seriously outraged and extremely upset over this.  I've been overly emotional the past few days due to lack of sleep, pain, and stress but I honestly am holding back tears right now.  To add insult to injury, for the past two years I've messaged all of my local news stations literally begging them to mention even one sentence on the air  ...OR even just on their facebook or Twitter page, that it's National Fibromyalgia Awareness day.  Seriously, I would've been happy had they just written "Today is National Fibromyalgia Awareness Day" on one of their social media sites, but not only didn't that happen, but they didn't even respond to my message to say "sorry, no can do".  As soon as someone is going to hold a party with bands and beer though, it's a complete article!

There have been times that I'd like to make a batch of potato salad too, but haven't had the money.  There have been times that I'd like to have a dozen eggs, a loaf of bread, and a gallon of milk but couldn't even buy one of those items let alone all of them.  Do you know why?  Because Fibromyalgia and all of the co-morbidities that I have along with it, keep me from being able to work a real job.  I don't have a husband and his income to help out because a few months after I was diagnosed as having all of these life long chronic illnesses, he bailed.  I can't meet anyone new, because my health keeps me from being able to get out of the house on a regular basis.  Do I set up a page and ask for donations when I'm hungry or I'm struggling to pay my bills?  No.  I do without.  I've been raised not to ask for "handouts", and I really struggled with setting up the page for donations to start up the seminars.  In the end, I did so though because it would be helping to improve the quality of life of those afflicted with a chronic pain and fatigue illness, and it would help me to support myself.  It's something that I would only have to do for a couple hours a day, once or twice a month.  That I could handle.  I can not handle a *real* job though, not even part-time.  It's just unrealistic for my health issues.

Maybe society as a whole isn't messed up with their thinking.  Maybe I'm the one who's messed up.  I've been accused of having too big of a heart before.  Of caring too much about people.  I don't know.  All I know, is that I'm really, really sad today. Sometimes, I feel as if I'm fighting a losing battle with trying to advocate for all of us that suffer and have a normal life ripped from us.  In all honesty, I probably am. Regardless though, I'll never give up.

Online Seminar: Living With Chronic Pain

The flyer didn't show up very well.  The two online sessions that are available are 3pm and 7pm EST, Saturday August 3, 2013.  The cost is $15.  Send payment via paypal to: jaammull@aol.com.  In the message section, please include your name and which session you'll be attending.  Please help spread the message!

Chronic Pain Webinar Dates

I'm holding a chronic pain webinar and hope you all join me, so that WE can all start educating and advocating for a cure for chronic pain/fatigue illnesses!  The more informed and educated that WE are, the more WE can all start making a difference.  Join me for discussions on research evidence that Fibromyalgia IS a real disorder and how that's been proven.  Learn what some of the top myth's surrounding Fibromyalgia are, and why they're myth's.  I'll discuss ideas and ways for you to try and get your family members, friends, and community members to understand what living a day in the life of a FMS/CFS/ME patient is really like.  WE'll go over some of the hurtful, rude, stereotypical comments that are sometimes directed at us.  Some of the information that WE will cover would also be very useful for you to open up a discussion to your doctor and/or his staff, if you are being treated by a doctor that doesn't act like they really believe what this awful syndrome puts us through.  We'll also go over some tips that may help you in a pain flare, along with just how little money for research the federal government hands out for research on Fibromyalgia compared to some other diseases.  I'll also be covering some statistics related to living with chronic pain that will be a real eye opener to some of you.  If WE don't start advocating for ourselves and others with our same conditions, then how can WE expect any one else to?  WE have to stand up and make people start taking notice of us, and let them know that WE refuse to sit back any longer. That WE demand our peers take notice of what WE go through on a daily basis just to survive.  I can't fight this fight alone, I need YOUR help.  This is something that WE can accomplish together though!

March 23, 2013 I'll be presenting the webinar at 2pm EST and then again at 7pm EST.  I'm also planning on presenting the webinar again on Sunday March 24th, at the same times as the Saturday presentations.  I'll except sign-ups until 10pm on Friday March 22nd.  If you'd like to join in, the cost is $25 and you're more then welcome to have your whole family, or some of your friends, sitting in with you at the webinar.  I know for me, it was a constant struggle in the beginning for my family to really grasp how Fibromyalgia truly effected my life.  My mom and youngest daughter accompanied me to my first live seminar and afterwards my mother told me that she "gets" it now.  She told me that she'd learned things from my seminar about my condition, that she hadn't known just from us talking about my condition at the mother/daughter level.  She had tears, when she finally "got it".  My daughter gave me a huge hug and told me that she's sorry that she'd blow me off when I'd want her to sit down to discuss my illnesses with her.  She also apologized for not helping me as much as she could have.  If your family & friends are having a hard time realizing what this does to your body and mind, they will really benefit from sitting in on this webinar.  

Send payment via PayPal by Friday March 22, 2013. The email address to send the money to is: jaammull (at) aol (dot) com.  Please make sure that you send it to me as a "gift".  Also, make sure that in the notes section you give me your name and which session you're signing up for.  By 12am Saturday, March 23rd, I'll email you with the instructions on where to go, to gain access to the webinar.  

The webinar will run for approximately 2 hours, give or take due to audience participation and questions.  You should have a notebook and pen handy, in case you'd like to jot some notes and/or questions down.  The more people we have joining us in our discussion, the more we all have the potential to learn from one another so please pass this webinar information along throughout all of your social media sites and by word of mouth to your friends, family, doctors, hospitals, clinics, etc.  I hope to see you all there!  

Gentle Butterfly Hugs to you all!

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.

My Dream For 2013

I'm really excited to turn my dreams into reality in 2013! A new career of helping to educate and to advocate for those with chronic pain & fatigue illnesses. I can't do this though without your help. I can't even get my page into the GoFundMe search results until the fund has received at least $100 in donations. I'd be very grateful if you all would help me to help others. Let's make 2013 the year of awareness and change in thought process for the approximate 116 MILLION people that suffer day in and day out with some sort of chronic pain illness. Pain that debilitates and takes away from a person's quality of life! If you don't suffer from a chronic pain illness, if you'd have to live ONE WEEK like we do, you'd understand WHY this is such an important feat.

I, along with approximately 115 other U.S. citizens would be extremely grateful for any help you can give us.  I also need a career, and where education and advocacy is so important to me, getting the seminars off the ground would be a dream come true for me.  The more people who know, and start to understand what people with chronic pain go through day-to-day, the better the chance we'll have at demanding further research.

I'm going to be completely honest here.  I do NOT have any quality of life the way things are.  I try so hard to hold onto my ADL's (Activities of Daily Living).  As much as I don't want to admit it, they're slowly slipping away from me.  I'm only 42 folks, and there are people who suffer like I do that's a part of The Fibro Frog, that are in their early 20's.  Research has made some great advances in the field of Fibromyalgia.  They now have proof that it's VERY real.  It's been proven that Fibromyalgia is a neuro-immune disorder.  Our nerve endings are significantly  effected.  Tests and various studies have proven that we really are having significant pain.  Brain imaging studies have also proven that the reason we're so tired all the time - wake up as tired as when we go to bed - is because we never go into the deep sleep cycle.  We don't get into REM, so we're never getting that restorative sleep that the body so desperately needs.  The old thought process of "There's nothing wrong with these people, they're just crazy and lazy" is now gone since research has proven so much.  Unfortunately, this is still the biggest myth out there surrounding people with a chronic pain condition such as Fibromyalgia.  We need funding for MORE research, so that we can advance on to find out what causes people to get Fibromyalgia.  We need funding for MORE research so we can find a CURE for Fibromylagia.  Most of us would even be completely stoked if they'd even just find a concrete universal treatment plan that would WORK for EVERYONE who's effected.  Right now we don't have that.  We have one pill for one symptom.  One pill for another symptom.  Sometimes a pill will work, then for others it won't work.  Right now, for lack of a better word, the doctors play russian roulette with us.  

Not only do I need a career that I can actually work, since there's no way in heck I could work a typical job, but I need to get the message out.  The message that "we" aren't crazy.   "We" aren't lazy.  My seminar not only hands a ton of information and resources to the person effected, but it also reaches out and shows the people who are NOT effected, how real and debilitating living with a chronic pain condition is.  It opens peoples eyes as to how much more research is needed.  If people doesn't understand the "truth's" of chronic pain, then there never will be pressure put on the government and private proprietors to give more money for more research.  Research that's needed more then I could ever convey.  I'm reaching out to everyone, to ask that you part with a couple bucks donation so I can get this dream off the ground.  If you're able to donate $5 or more, then you can donate via my GoFundMe account by clicking HERE.  GoFundMe has a minimum donation amount of $5.  If you aren't in the position to donate at least $5 but want to contribute, you can donate $1 or more via my PayPal account: jaammull(at)aol(dot)com.  

No matter what, I want to thank all of you for at least reading this and following along with my progress.  I'm blessed that I've gained so many followers in such a short time period.  Less then 1yr, and that amazes me.  I'm thankful and greatful for each and every one of you to have come into my life.  I hope you all have a Blessed holiday season.  Merry Christmas to you all!

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.

Key Chain Fundraising Event

Hi everyone!  I've designed a key chain using my own photo and words, to use as a fundraiser.  The key chain will have the above photo on it.  I'm trying to raise the money needed for me to present and advertise my living with chronic pain seminar.  I'm extremely grateful for each and every order, and would really appreciate it if you all would also share this event through your social media sites to help me spread the word!  I have a great group of supporters here on The Fibro Frog, and I appreciate each of you!  Thanks for your help with this event!  You will find the event by clicking: HERE.  Thanks again!  =)

If You'd Only -------- You Could Cure Yourself

I've heard that phrase SO many times lately that I'm ready to scream, cry, and pull my hair out!  I have a friend who means well, but calls me every few days telling about some cactus-juice-wheat-germ-iodine-swim-in-warm-water-while-blowing-through-a-hose-while-pouring-holy-water-on-my-head cure that works "..and I really mean it because my best-friend's-cousin-who-is-friends-with-my-grandma-who-lives-in-Belgium-with-the-brother-of-a-priest-who-had-a-prophecy-that-this-will-work" was cured of her Fibromyalgia and she had a really bad case of it! Hmmm ....really?  That's so not interesting.

Does this woman honestly believe that if there was a proven "cure" for Fibromyalgia that I wouldn't already have jumped on it?!  Nooo, I wouldn't do that because I like living virtually every day of my life in pain.  I like the fact that I can't go work and make money that I desperately need.  I like feeling as if I have Alzheimers at the age of 41.  I absolutely love trying to talk to someone and then sitting there saying "ummm... ummmm.... shoot!  I forgot what I was going to say.".  I also really love the fact that my concentrate is just so great.  You know, I've only spent close to an hour and a half now to write these two paragraphs.  -Not time consuming what-so-ever.  I absolutely love the insomnia that I deal with on a daily basis.  You know, because life is just so much brighter when you look at it with 2-4 hours of sleep!  I just jump up and down with excitement over the depression that the pain and insomnia cause.

No matter how well meaning people are when they say this stuff to you, it gets really old, really fast.  Seriously, I go to the 2nd rated Rheumatology clinic in the entire U.S.  If there was a cure, they'd know about it.  They'd have me on it.  I wouldn't be desperately advocating for research to find a cure.  I wouldn't be trying so desperately hard to educate people about the myths and truths of living with a chronic pain and fatigue illness.

Every time Sara says something like this, I try to carefully let her know that I appreciate the fact that she cares about me, but that there is NO cure for Fibromyalgia.  She just adamantly keeps arguing with me that isn't true.  This is just another reason why holding my chronic pain seminar is so very important to me.  There's just so many myths out there that need to be dispelled.  If they aren't, then I'm seriously going to lose my mind one of these days and end up completely unloading on one of these well-meaning people in my life. Please remember that I'm doing a $1 challenge, and share it with your family and friends.  My prayer is that I have enough in donations by my birthday, November 18th, to hold at least one seminar.  To pay for the conference room and to pay for advertising.  I challenge everyone who reads this post, to donate $1 to my GoFundMe.org page.  You will find the donate button on the right hand side of this blog.  Once you're on my donation page, I ask that you please share the link on your social media sites.  You all can't imagine how grateful I am for every single $1 donation that's made towards my cause.  If you can't accept the $1 challenge, then I ask that you'd please at least share my donation page via your social media sites.  I appreciate each and every one of you out there!

Seminar Excitement!

Things are moving right along for my first chronic pain seminar.  A caring friend made this flyer for me last night.  I love it!  What do you all think of it?  The pastor of the church I'm going to hold it at, is emailing the flyer throughout all of the other churches in that denomination, and an elder is taking flyers to the hospital that she's a nursing supervisor at.  My daughter, Courtney, also posted the flyers in some online garage sale sites that are local to us.  Sunday, I'll be having all of the material for the seminar, including the flyers, printed up at Staples and will begin to start putting the packets together that I'll be giving out at the seminar.  

This has been a dream of mine, since I was first diagnosed with fibromyalgia.  Although fibromyalgia is what I was diagnosed with, this seminar will help anyone who suffers from any type of chronic pain condition and/or invisible illness.  To see my dream finally coming true, is surreal to me.  Now, as long as I have people show up, I'll be feeling pretty happy!  Having people show up is probably the biggest hurdle I'm up against lol.  I'd love to be able to advertise in the newspapers around here too, but I just don't have the money for that.  My husband still is acting like he doesn't have a family.  Since he moved 3 hours away to live with some woman he met on the internet he hasn't spoke to us nor gave us any money for child support or alimony.  My hearing to get child support started isn't until the end of August.  

To know that I'm working to make my dreams come true, and actually accomplishing those dreams, fills me with a great deal of pride and personal satisfaction.  I may be sick, but I can still fight and have a voice that's heard.  I'll never give up trying to advocate for those of us with conditions such as I have.  This will be a life-long journey for me.

If everyone could leave me a comment, telling me what you would like to see discussed at a seminar such as I'll be putting on, it would mean a great deal to me.  I know what I have planned to cover, but maybe I've missed something that would be beneficial to my audience.  I'd be humbled for you all to work with me, so that I can present the best possible seminar that I can!

Memorial Day 2012

Today was a tough day for me to get through.  See, my STBX husbands birthday is May 27th.  We always have our pool up, and grill out.  Sometimes we'd go camping for the weekend, or rent a cabin in southern Ohio.  I can't tell you how many times I thought of him yesterday.  Our daughter tried to get a hold of him so she could tell him happy birthday, but he didn't return her call.  That hurt her, which hurt me in return, as her mother.  

Despite him not being here this year, I was bound and determined to try and make this a great day for my daughter anyway.  Well, you all know what they say about the best laid plans, right?!  My son put the pool up for us about a week ago.  I figured that would give us plenty of time to have it ready to swim in by today. Well, we had one problem after another with the pool, filling it, etc.  I had one pouch of chemicals left from last year and figured that would be enough to get it going for us.  Wrong.  Today, the pool looked like a greenish-black sesspool.  Of course since I haven't worked in years I don't have a job to make money to buy  more chemicals, and the STBX isn't paying me support that he promised he'd pay when he walked out.  

Next, my daughter wanted chicken on the grill with BBQ sauce.  Go ahead and laugh, but I've never cooked on a gas grill before.  My STBX always did it.  Courtney (my daughter) wanted it so bad, and has been so hurt and disappointed over various things since her dad walked out, that I felt I had to try.  It took us until around 8:30pm to get the grill out and start making supper.  The electric start on the grill is broken, which I knew, so we have to light it with a match or lighter.  We'd had those long lighters that's used for that, and that's what STBX always used.  Of course we couldn't find it though.  We rolled up a piece of computer paper and used that to light it with.  Low and behold, after we were done, we found the long lighter.  She's trying to be nice and saying that the chicken was really good, but in all honesty it was pretty much a charred disaster.  

My youngest son is the only one of my children that's married.  Him and his wife are in the process of moving out of my house.  They stopped over to pick up a load of their things.  He casually mentioned to me that he'd seen his aunt yesterday, the one who STBX moved in with when he left me.  He said that he'd asked his aunt what his dad had been up to (he'd stopped to try and see him on his birthday) and she told him "Nothing much.  He's just been hanging out with his new girlfriend".  Of course hearing that today, even though I already "knew" he was seeing someone, really hurt.  By the time my son had left, I was sitting hunched over my desk due to my back pain.  I started having chest pain again (I think it's from anxiety), and felt completely wiped out.  I couldn't help it, but the tears started flowing again.  

My kids haven't heard from, nor seen their dad in almost 3 weeks now.  This is really hurting my daughter.  She had called and left messages for him to call her, for a week straight without receiving a phone call back from him.  Stuff like this really hurts my health and my depression.  When I see my daughter hurt, it hurts me.    All of this stress; him leaving, him not giving me monetary support (this past Thursday night when his check hit, within 5 minutes or less of it hitting he'd taken it all out exept for $15.40 that he left for us), not being able to get a start in public speaking for motivation and advocacy like I'd desperately praying for, feeling ill, all of it, makes me have pain and insomnia flares.

I'm not sure where I'm supposed to go with my life, but I'm still clinging to the idea that there's a reason for everything that's happening to me.  I still firmly believe that the reason I became so sick, with so many health problems, is because I'm supposed to educate people with seminars.  I do realize now, that in the grand scheme of things, my daughter and myself are better off without my husband here.  He didn't treat us right, even when he was here.  We both deserve better then that.  Still, I loved him very much, so it hurts.  It's so hard to get used to not having someone to do things with.  Someone to talk to. Someone to give me a hug, and care how I feel that day.  It's boring and lonely.  I know, that eventually I'll adapt though.  Eventually, I'll get a break in paid public speaking and I'll be able to support my daughter and myself.  I'll eventually have that to busy my time, and to get me out around other adults.  I'll be able to focus on making a brand new life for Courtney and I.  One that's better then what we had.

Some days, it feels like the depression is just too much for me.  The stress, feels like it's pulling me under a current and that no matter how hard I try to keep swimming, I'm going to sink anyway.  My fibromyalgia and arthritis was bad before he ever left.  Now, the symptoms are a lot worse.  I didn't think that was possible, but unfortunately I've been shown that it's very possible.  Some days, the pain is crippling.  Some evenings it takes everything I have, to walk across the house.  I moan and groan like I'm 80yrs old from the pain in my knees, every time I stand up.  

No matter how much pain I'm in, or how dark and dismal my future may look to me right now, I know that there is light at the end of the tunnel.  I'm a fighter.  I always have been.  Therefore, I pick myself up and carry on.  I refuse to allow a man I've loved to ruin me.  I refuse to lay down and cave into the pain of my illnesses.  One of these days, someone in the right field will hear my cry.  They'll read my words.  They'll talk to me, and see what my seminar is about, and what I have to offer their audience.  I believe in not only myself enough, but in everyone with a chronic pain illness and/or an invisible illness enough, that I won't shut up.  I'll keep thinking, and reading, and researching, and blogging, and sending emails until someone reaches out a hand for me to grab.  A lifeline that they throw to me, to pull me out of the water.  Then, in my seminars, people will not only hear my voice, but the voices of all of us who suffer from these debilitating conditions.  When will that day come?  I don't know.  I do know though, that it will come.

Motivation and Advocacy - Public Speaking

 

 

Friends, paid public speaking is something that I was trying to set myself up to venture into within the next 6 months to a year. The Fibro Frog is gaining exposure and talk in several circles. Life is full of twists and turns though, and due to the turns my life has taken, I need to just jump right in. If you know of a group or organization that would benefit from a motivation and advocacy speaker on living with chronic pain and/or an invisible illness, please pass my name on to them. Several handouts, as well as resources will be included in all seminar's.  As long as they're willing to pay my travel expenses along with my fee, I don't care where in the country they're located.