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.

A New Year; New Hope

 

Well, 2014 is here.  I hear people say all the time "It's just another day" or "It's just another year, nothing to be excited over".  Well, it is something to be excited over, in my opinion.  Every new year, brings new hope that this will be the year that a cure is found.  At the very least, it brings hope that a new treatment that works for everyone is found. 

 

Each year, fibromyalgia and other chronic pain conditions gain more awareness.  I've said it from day one, but I'll say it again ...awareness ='s education ='s more donations for research, and research ='s a possible cure or new treatment plan.  Even a new treatment plan ='s hope for getting our lives back, and that's all that any of us really want, right? 

 

I've sat here the past two days, in a pain flare.  Mind-boggling-make-you-grouchy-curse-under-your-breath-makes-you-want-to-gouge-your-eyes-out-pain.  Not just a little sore & achy type of pain. I know that on this blogs facebook page that many are in this type of pain flare right now.  I think that all of this snow and the frigid temps are partly to blame for all of the flares right now.  This is no way to have to live.  -I'm using the word "live" loosely here, too.  Because really, how is being in pain every single day of your life, being so tired and fatigued that you can't even keep up with daily chores, living?  It isn't.  We're sustaining.  Sustaining our existence, and that's about it.

 

Almost two years ago, I was completely overwhelmed at the thought of diving into the blogging world, and the act of advocacy.  Thoughts crossed my mind such as "Who would be interested in what I have to say?  Who could I really help?  I don't have a medical degree nor do I have a degree in journalism.  I don't know anything about social media, and I barely know how to use my computer".  You know what though?  I was so sick of the pain and the fatigue, and the insomnia and brain fog.  I was depressed, and overwhelmed. 

 

Google had become my best friend.  I googled, and googled, and googled reading every blog I could find.  Most of them, wrote about fibromyalgia but then would add something along the lines of " ...but we won't let fibro define us" or "we're bigger than fibro" or some other peppy-I'm laughing-at-this-illness-and-won't-let-it-get-me-down-make-me-barf-type-of-crap.  Now, I'm all for positive thinking.  To know me in real life, you wouldn't believe the positive spin I put on my life.  You wouldn't even believe half of the crap I've been through, and I still maintain a positive attitude most of the time.  Heck, I was a high school cheerleader, after all.  But!  I just could not relate to what these other blogs were saying.  I'd come away from reading them, feeling even more sad and alone than before I read them.  How could they be so positive and upbeat all. the. time?  How?  People complain that there isn't enough research funding to unlock all of the mysteries that fibro holds.  Mysteries that could lead to a cure.  Well, if people think that fibro isn't a big deal; that fibro doesn't define a person's life, how can we expect people to donate for further research?  No, fibro is a big deal.  Fibro does define a person's life. 

 

Finally, I thought about one of my dad's favorite sayings growing up.  A quote from  David Glasgow Farragut that I actually used in a Voices Of Democracy speech contest when I was in high school.  "Damn the torpedoes.  Full steam ahead!".  If I felt alone, and sad, and depressed then someone else had to feel that way too, right?  A vigor ran through me.  I vowed to myself that even if one person read my blog, and I helped them to realize that someone else felt the same way they did, that it would all be worth it. 

 

Once I started the blog, and I realized that there actually were people out there that felt as crappy with fibro as I did, I started to get angry.  Angry that there were people out there making fibro look like it isn't a big deal.  Making it seem like "Oh, it sucks, but we'll be ok ...we're fighters!".  We most definitely are fighters; but we have to be or else we just wouldn't survive!  I was angry that the majority of the public; even a lot of doctors and people in the medical field, were so uneducated about how damn tough it is for us on a day to day basis.  Angry that people just don't "get it" when it comes to what fibro is really like for those of us that suffer.  That, is when I vowed not only to myself, but also publicly, that I will advocate for education and a cure until the day I die. 

 

At that point, the idea of my seminar was born.  I started gathering information and facts, and putting the seminar together.  My life-long goal, is to travel to every major city in the U.S. presenting this seminar.  Giving tips and lending support to those who suffer with this illness.  Educating those who do not suffer with it, as to the eye-opening realities of our day-to-day life.  Submitting proof that it's a real condition, with real life-altering consequences.  If people only read or hear about the positive stories that are shared, then why should they donate to research?  Life isn't so bad ...these people are managing their lives just fine.  No.  Just ...no.  The vast majority of us are not.  My mission is to show that research is needed.  A cure is desperately needed.  Hell, I'm a 43 year old woman, and I can't even support myself.  How sad is that?!  It sure isn't because I don't want to.  I hate ..no, despise the fact that I can't work a "real" job.  I hate that I can't just breeze through my housework and cook lavish meals.  I can't just jump in the car and go places and do things that my friends are doing.  My life doesn't work that way.  Because of fibro.  I'm not alone out there either.  It's time we find a cure or a solid treatment plan that will work for everyone.  We deserve to live a fulfilling life. 

 

I don't know when my dream of presenting seminars will come to life.  The old cliché of "nothing in life is free" is unfortunately true.  I need funding to be able to secure locations in which to hold the seminars, along with travel expenses and marketing.  After all, what good is a seminar if no one knows it's being held? 

 

Nineteen months ago I started a GoFundMe account, to try and generate the funds needed to get the seminars started.  In that nineteen months, the page has received $85 in donations.  Several of them from the same person, bless her heart.  She's a fellow blogger that also has fibro.  I've seen pages on that website, set up because the person is asking for money to pay their house payment.  Or because they want a new or bigger vehicle.  These pages actually receive thousands in donations.  What this proves to me, is exactly how bad this seminar is needed!  It proves to me that the vast majority of people just don't "get it" when it comes to fibro.  They have no idea how badly education is needed, and how desperate we all are for a cure.  All this does, is drive my passion for getting this off ground even deeper within my heart.  It may be another 19 months before I have the money needed to start the seminars.  It may be 38 months.  Regardless of how long it takes, this is something I will never give up on.  I care too much about my quality of life and my future.  I care too much about your quality of life and future!

 

As we start off 2014, I want to make sure that each and every one of you know how much you mean to me.  I truly care about every one of you, and value your readership more then you know.  I want you to know that I "get it", and I'm here for you.  I also want you to know, that I'll always educate and advocate for our future; our cure.  If you know of an individual, business, group, or organization that might be interested in donating to the seminar fund, please pass along this link to them.  http://www.gofundme.com/pc0hc  Let's go forth in 2014 hopeful that this will be our year.

 

Love and Gentle Butterfly Hugs,

-Amy

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!

Random Acts Of Kindness Challenge

I'm sure that everyone has heard of random acts of kindness, good karma, etc.  Well, I'm going to ask you all for two random acts of kindness.  First, let me tell you what has prompted this chain of thought.

I'm always passionate about wanting to educate and advocate.  I want more then anything for a cure to be found.  Heck, I'm not greedy, I'd even be thrilled if a new treatment plan was found that would help everyone universally.  Unfortunately though, I really don't feel as if that will ever happen any time soon. Not the way things sit right now, anyway.  

Why, you may ask?  I'll tell you why. Because there's still too much stigma out there concerning sufferers of chronic pain conditions.  There's too many myths and misconceptions. Too many people who think that either the pain and fatigue associated with Fibromyalgia, or CFS/ME, RA, Lupus, Osteo arthritis or ANY chronic pain condition for that  matter, is "all in our heads".  Or that we're attention seekers.  Or, that we're just lazy worthless people who doesn't want to do anything and contribute to society. My favorite reason of all though?  That we're drug addicts just looking for a way to get pills shoved at us.  Oh buddy, let me tell ya; I just love the fact that I feel like a walking pharmacy. I just love the fact that I have a few meds that I'm supposed to take three times a day, yet I'm lucky if I remember to take them three times a day - because that sounds like a true druggy right there, doesn't it?  I just love that while reading the possible side effects of taking a newly prescribed medicine, the information stated that long term use in mice, causes stomach cancer.  It went on to say though, that they had no idea if that would occur in humans or not. Boy, that sounds encouraging, right?  I kind of want to literally throw up each time I look at the foul little thing now.

Today and tonight were horrible in the pain department for me.  If I said the pain was bad, horrible, horrendous, debilitating, or any other adjective like that, it still wouldn't accurately describe the type of pain I've dealt with.  When I sit around in this much pain, even after taking meds, it tends to make me hate Fibromyalgia, DDD, IBS, and arthritis just a little bit more.  It makes me want to push and shove to demand more funding for further research. It makes me want to educate and advocate that much more.  The only hope we have, is if we can make others understand the importance of advocating for further research. To help them understand what a day in our lives, is truly like, so that they'll realize the importance of a cure or of a treatment plan that will actually work!  

This is where you all come in.  I've done the research.  I've mapped out all of the statistics.  I've put together a seminar that not only will give resources and interesting studies for those of us in attendance that suffer, but I also have material in there telling what a true day is like for us. It has material in there proving that this isn't in our heads, or that we're not seeking attention or faking because we're lazy or addicts.  Your packets share with you productive ways to help your family and friends to understand what this is really like for you.

Since I've been single for the past 9 months, and I haven't had a job in years due to my health, I can't foot the expense of getting this seminar out to the general public by myself.  I'm extending a challenge to you all, asking for two acts of random kindness from you.  One, is that if you can afford even a $5 donation to my seminar fund, that you'd highly consider making a donation.  $5 is the minimum amount that GoFundMe will accept.  The second act of random kindness that I'm asking you all to do, is to please share my mission, and link to either this post or directly to the GoFundMe page, throughout your social media sites.  If you have a blog, please extend this challenge to your readers.  If you have a facebook fan page, please link to this post on your page.  If you aren't a blogger or crafter with a facebook fan page, then I'd ask you to post it to your personal facebook page, extending this challenge to them and for them to extend it to their own friends and family as well. If you have a Google+ account and/or a Pinterest account, that you share this on those forms of social media.  If you have a Twitter account, please tweet this post and ask for RT's on it. 

At the age of 42, I know I'm not a spring chicken.  I'm also not an old duck yet either though.  The thought, that I may have to live another 30, 40, 50 ...years trapped inside my own personal prison is a horrifying thought to me.  

To feel exactly like you have the flu every single of your life, all the way down to nausea and skin that's sore to the touch.  Skin that hurts if it's even lightly brushed by someone else.  Or just like mine is tonight, that hurts when my shirt shifts over it while I'm typing this. To having sharp pains.  Stabbing pains.  Dull, deep pain.  Sunburn feeling pain.  Sore muscles, and joints that hurt.  Headaches.  Muscle spasms. The lack of energy.  The dozens of co-conditions that run with FMS.  It's just all. too. much. It's no wonder that depression is a co-condition of fibro.  Who wouldn't be depressed having to life every single day of your life like this?

Thank you all for taking the time to read this.  Thank you to those who will accept my challenge of the two random acts of kindness and passes the challenge on to others as well!

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.

2013 - The Year Of HOPE

On one hand, it seems as if 2012 lasted a decade.  On the other hand, I just can't believe that it's 2013 already.  I know, that doesn't make much sense, does it?  2012 brought some hard knocks for me.  One's that I never thought I could pull myself out of.  I caught myself saying over and over "Gosh I wish this year would just hurry up and get over.  I want to wipe 2012 away and never look back on it".  But you know what?  As bad, ...and trust me, it's been bad, of a year as it was, I still have things I'm thankful for.  If not for having a second opinion from The Cleveland Clinic, I wouldn't have started The Fibro Frog.  Of course if I wasn't sick, I never would've had that appointment, to start this blog either so I have to also be grateful that I'm sick.  That just sounds completely crazy, doesn't it?  Really, it isn't though.  This blog (and corresponding facebook page) has lifted my self-esteem more notches then I ever thought possible.  The feedback I've received about the blog and facebook page, has brought me joy and peace.  Being told "Thank you", and words such as I've helped them out of a dark place, that I've inspired them to keep going, etc. has just meant the world to me.  If not for all of this ....the sickness, the doctors, the pain, the blog, the facebook page, I wouldn't have met so, so, many wonderful people.  People that even though I've never met in person, have stood beside me.  Held my hand.  Picked me up when I've needed it.  I've had some ladies that I've been "friends" with for around 10 years now.  We met on another internet site, and continued our friendship on facebook.  In my darkest hours, when I've felt completely defeated and felt like giving up on everything this past year, they've held me, pushed me, and motivated me. When I fell down this past year, they'd pull me right back up.

When I first started The Fibro Frog, I was doing so much researching.  Spending hours a day looking up information, reading, and studying anything I could get my hands on (or eyes on in this computer world I guess lol) .  The more I researched, and the more I read, the more disgusted I became about the minimal research that's been done on not just Fibromyalgia, but on chronic pain illnesses in general.  It didn't take me long to realize that advocating for more research in these areas, to educate others who do not live with the day to day pain that I, and millions of others, live with was my new passion.  I told my husband, that I wanted to slowly put together a seminar on living with chronic pain.  I told him not only did I want to gear the seminar to those who have a chronic pain condition, but I also felt it very important for them to bring their family and friends too.  I had already realized myself, that it's almost impossible to make others really understand what it's like for us to live just one day with the pain we have.  Any help I can give to a fellow Fibromite to help their family understand, is well worth the effort. This seminar was to provide not only tips, tricks, common treatment plans, ways to help you communicate with your friends and family about what it's really like to have a chronic pain or a chronic pain and fatigue illness, but it also was to speak directly to those non-sufferers that's sitting in the audience too.  To give them a glance at what it's really like for "us".  That their loved one wasn't just lazy, ..wasn't just crazy.  I told my husband that I'd give anything to be able to have every doctor and every nurse in the entire U.S. sitting in that audience too, because so many of them treat those of us with a debilitating illness like we're liars.  Pain pill seekers.  Dirt. Trash. Like we're so beneath them.  Sound harsh?  -It's not as harsh as when someone you're going to in the medical profession,  asking for help ...begging  for help in some cases, makes you feel this way.  Long story short?  He looked at me, rolled his eyes and made a snorting sound, then turned and walked away from me to go watch tv.  I can't tell you how much that stung.  Another time that just drilled it in even deeper to build the seminar was when he said something to the effect of "when your meds start working".  I sat there and looked at him.  I said "You DO know that the medicine isn't a cure right? There isn't any cure for what I have." -Now keep in mind that he had been with me to every single doctor appointment that I had been to.  His response?  He said "There isn't a cure?  I thought if you took the medicine that you'd be fine."  I couldn't believe it.  It really stung to know he'd been to every appointment with me and obviously hadn't cared enough to even listen to what two different doctors had told me.

Two months later, he walked out walked out on me and wanted a divorce, completely out of the blue.  The number one reason he cited for leaving me was "I'm too stressed out about your health.  I just can't take it anymore".  I'll bet you all can imagine how much that hurt me.  I'd been with him for 20 years.  Back in my 20's and early 30's I'd worked my butt off.  I worked 3 part time jobs.  Another time I worked one full time job and 2 part time jobs ...all while carrying 18-20 hours in nursing school and raising four children.  Unfortunately though, I hadn't worked in years due to my health.  My husband was my only income.  When he left, so did my income. I knew I had to start working on putting the chronic pain seminar together way quicker (In fact, at least a year quicker) then I'd originally planned.  There is just no way that I can work a "typical" job with my health the way it is.  I started diving head first into education and advocacy.  Hence, "Living With Chronic Pain - A Patient's View" was born.  Not without a lot of nudging and encouragement from the wonderful people that's in my life though. I feel so lucky, ...so honored, to have "met" all of the wonderful Fibromites that I've encountered along my journey with facebook and The Fibro Frog.  I've decided, that as bad as 2013 was for me, that it also gave me a lot of blessings.  Therefore, I can't just push it behind me and forget about it. In the last few days, I'd even feel guilty when I'd catch myself thinking about how "awful" 2012 was and how I couldn't wait to move on to 2013.  

Now that 2013 is here, I'm jumping in feet first.  I'm embracing 2013 as the year of HOPE.  Hope that there will be more research.  Hope that a cure may be found.  Hope that a treatment plan that actually works universally will come to light.  Hope that I can educate and advocate to help others. Hope that I'll be able to launch a new career while helping others.  Hope to make even more new fibro friends ...or friends who suffer from any chronic pain and/or fatigue condition.  I hope to make a difference not only in my life in 2013, but also into the lives of others.  I'll be posting one motivational quote a day, to help keep me on track and  show me that there's hope.  There is ALWAYS hope in every situation in life.  Without hope, what do we have? We might as well lay down, curl up, and wait for death to overcome us.

I can't tell you the amount of people who has told me that they'd love to attend one of my seminars.  I've had people tell me that if I booked anywhere within their state, that they'd drive to be present.  Funding has been a big problem for me, to go and present the seminar.  After a lot of thinking and consideration, I've decided to turn "Living With Chronic Pain - A Patient's View" into a Webinar.  Solves the problems of needing a lot of cash for advertising, travel expenses, and conference room rental, and the amount of people I could reach this way is limitless.  Anyone who wants to attend will be able to do so, right from the comfort of their home. For the first few webinar's that I conduct, I'm only going to take five people per session.  The webinar will last approximately 2 hrs, give or take depending on how many questions we get.  In such a small group, I'm not anticipating so many questions that we'd go over a 2hr time slot, but you never know I guess lol.  

Saturday January 12th is the date for the first webinar.  I'm going to run three sessions that day.  I'll have one  from 3-5pm EST, one from 7-9pm EST, and the last one will be 11pm-1am EST.  I'm also offering two session on Sunday January 13th.  The time slots for those are: 3-5pm and 7-9pm, both time slots are EST.  

I'm also offering a fun special to kick the webinar off with!  On the registration form I have a spot asking who referred you.  For every person that signs up, pays for their spot, and lists your name in the referral spot of the sign up form, you'll get one entry into a drawing to get your seminar FREE. If you've already paid me for your spot, then I will reimburse you for your fee.  I'll take referrals up to noon EST on Saturday January 12th.  So what are you waiting for?  Sign up and share the link with your family and friends!  To sign up and to get the URL to share, just click HERE!

Just remember, 2013 is the year of HOPE.  For all of us.  You never know, this could be the  year that scientists get a break and figure out a cure for our pain, insomnia, and memory problems.  I'm wishing all of you a happy, healthy, hopeful new year.  Sending a gently butterfly hug out to all of you!

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!

A Dilemma - Wrestled With Should I or Shouldn't I

Someone contacted me and asked me to post the link to my donation page for the seminar (which I kindly pointed out was located on the right hand side of this blog), and said that they know the struggles I've gone through this year, both mentally and physically.  They said that they know it's been very hard for me monetarily with my husband leaving and my health not allowing me to work, because they're a facebook friend of mine and have seen my status updates. They asked me to post my PayPal email address too.  Well, last Friday I'd posted on my personal facebook page that I hadn't received a child support payment in two weeks and the 2 previous payments I'd received wasn't even for as much as it's ordered to be.  I said I could about cry because I was over $400 short on bills for the month and still had Christmas shopping to do. I had a lady on there tell me I should just be grateful to get anything.  I explained to her that in the past this wouldn't have been a problem because I could, and did, work to support myself and my family.  I told her that it's just so very hard now, because I'm sick and unable to work.  She responded by telling me if I'm unable to work, that I shouldn't have any kids and told me "for lack of a better word, you're USELESS".  Yep, she sure did and she even used the caps as I've quoted.  I can't tell you how much this stung.  My oldest daughter, 23 and a grad student, responded and told her that I've always found a way to support my children and that I've always been a good mother.  The request for my info came in on Saturday and I was still pretty raw with hurt feelings from Friday, so I've just sat on it.  When I emailed the person back and thanked them for the offer, I told her it would make me feel bad to do what she'd asked me to do because I was afraid that others might think and feel about me the same way the facebook lady felt.  She responded back and told me that she herself wouldn't be able to do very much but that she really wanted to do what she could and that I should put it out there because even if it's only a few dollars, that a lot of people like to help others that are down on their luck at this time of year.  She told me that right now keeping up this blog is my "job" and that it's not wrong to accept donations for the "job" I do.  I still feel really funny about this, but I've decided that I'll do it. Please, no one think you "must" contribute to either (the seminar donation page  for the seminar overhead or my paypal for my personal use).  Getting these words out is worse then having teeth pulled to me.  I extremely dislike asking for help.  It was explained to me though, that if I don't post it that I could be taking someones good deed for God, away from them (that is the way my mother explained it to me when I told her about this situation).  Sooo, if you want to donate to the seminar fund, there's a GoFundMe button on the right hand side of the page.  Just click it and it'll take you where you need to go.  If you want to contribute to my PayPal for my own personal bill/Christmas usage, my PayPal address is: jaammull(at)aol(dot)com.  I'm completely embarrassed to do this, yet I'm humbled that someone thinks enough of me to want me to post it.  I'm conflicted.

Magic Christmas Dust

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.

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!

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!  =)

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.

The Common Cold

The phrase "The common cold" actually makes me chuckle right now.  Common?  Not with me.  I never have anything common wrong with me.  Even something as simple as a "common cold" is not so simple.  My daughter had a cold and yeah, she complained a little about her nose being stuffy/runny and a sore throat, but that was it.  She had it a couple days, it ran it's course, and now she's all better.  I, on the other hand, am now sick.  Not just stuffy or runny.  Down right time-to-consider-going-to-the-ER-to-get-a-breathing-treatment-sick.  My nose IS stuffy and runny, my head hurts, but the most frustrating is the constant 100% of the time wheezing.  Then the coughing that the wheezing causes.  Then the dizziness that coughing brings on.  Then, I start back at the beginning to make the circle again.  On a positive note though, I do not have a sore throat like my daughter did. Lucky me!  =)

Just about every day I feel like I have the flu on some level.  The muscle aches, the fatigue, the joint pain.  Tonight, if I didn't know better, I'd swear I have the flu.  My front thigh muscles are absolutely pulsing and screaming in pain.  My arms feel like they're both weighted down. I've had the flu shot though, and I don't think I'm running a fever.  I just seem to get everything 100 times worse then everyone else I know.  If someone gets a cold, I get bronchitis.  If someone gets bronchitis, I get pneumonia.  

I feel like all I do any more is complain and whine.  That makes me feel bad.  I know that I have to be incredibly annoying to those around me and to my friends online.  This isn't who or what I want to be.  I want to be happy, and laughing, and having fun.  Sometimes I don't think that I even remember what fun was for me.  Then, the memories come back, and I remember having fun.  I remember laughing and being with my friends.  I remember dancing, and doing silly things all in the name of fun.  I feel like I'm this fun-loving person, stuck inside the body of an old person.  I know that I'm not a "spring chicken".  -Oh how I'd love to go back to my 20's and relive my life.  There's so many things I'd do differently.  I'm also not a "old person" yet either though.  I'll be 42 next month.  There should be plenty of time left in my life for me to have fun.  To hang out with friends.  To fall in love and be loved by someone.  None of that will happen though, when I'm always in pain and complaining.   

Have you ever been in such constant annoying pain that you could seriously just scream at the top of your lungs?  Not from the pain being so sharp ...or not so horrible like labor pains, ..but pain so constant that after a week of it you're ready to just scream and lose your mind?  This is where I'm at tonight.  I can always handle pain like this for about a week straight, then I start losing it.  That's when the depression kicks in and I start questioning "why" I'm even still here on earth, if I'm going to have to live every day (or most days) in this kind of pain, and feeling alone, desperate, and isolated. If you "know" me at all through this blog, you know that I don't sugar coat anything.  The reason I don't sugar coat anything, is because I feel it's important for others reading this to know exactly and honestly, how I feel.  It's important to me, so that when someone else is feeling this way, they don't feel alone.  I know what kind of stigma depression carries in the communities.  I know that people who do suffer depression, sometimes feel embarrassed because of it.  If you are reading this and know what I mean, please don't ever feel like that again.  Your feelings are real, and they're valid.  You're not alone.  If people who "look down" upon those with depression had to live a day in our lives, they'd think much differently.  

As most of you know, I'm trying to break out into the public speaking and advocacy world.  Because of this, I've had some people tell me that maybe I shouldn't be so honest, ...that it may hurt me in my new career.  I still stand by what I've said to those people.  What I've said is this; those who read about me, or those who may come to a public speaking engagement that I may have, deserve no less then the truth.  Maybe I "am" going to be looked at in a different light because of my education and advocacy efforts, but if I can't be the real me, then I don't want to be anything at all.  The people who are going to listen to me speak, or read what I write, deserve no less then the truth.  If by being honest I help even one person to not feel alone, or I help one person who isn't sick realize what it's like to be trapped inside a sick body, then my being honest is worth it no matter what some others may think or say about me.

I don't have much to offer anyone, but what I do have plenty of is compassion, empathy, caring, concern, and a willingness to do anything I can, to help whoever I can.  This illness may have stolen my fun and my laughter, but it will never steal my heart.