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!

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.

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.

Another Year Older

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

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

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

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

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

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

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

Education, Motivation, and Advocacy Seminars

It's become more then obvious, that if I want to conduct seminars on living with chronic pain/invisible illnesses, that I'm going to have to take the initiative to get things rolling for me.  Paid public speaking is a hard thing to break into until you have really made a name for yourself.  Opportunities are not going to just fall into my lap.  If I want this, then I need to make it happen.

As much as I didn't want to, I've opened a Go Fund Me account.  I'll be seeking donations, with the overall goal of collecting $5,000.  I need this money, to have the funds to rent a couple hotel conference rooms and pay for advertising, to get my first few seminars under way.  I'm also going to have to purchase a video camera so that my first few seminars can be recorded, then I can upload clips of it to YouTube, so that potential clients will see what I have to offer.  I've been approached by two different people so far, asking if I have any clips uploaded to  YouTube.  No clips, meant no work for me.

I'm confident that if I can book a few seminars on my own, that word will spread about me and I'll be able to make a career out of paid public speaking.  I want to educate, advocate, and motivate.  Not only individuals who suffer from chronic pain and/or invisible illnesses, but also doctors, nurses, politicians, pharmaceutical companies, the general population.  Nothing will ever change in the world concerning chronic pain conditions, unless people know about them, and understand them.  My hope is that someday soon, enough people will be aware of the facts of these conditions, that more research will be conducted and a cure, or at the very least, a concrete treatment plan will be found.  Right now there's too many myths about these conditions circulating that need to be dispelled.  

If you know of any company, corporation, or organization that would believe in me and what I'm trying to do, please point them to me and/or my donation page.  I absolutely hate asking for help, but I'm left with no choice but to swallow my pride and ask for donations.  This is too important to me to not make it happen just because I don't have the money to do so on my own.  You can find my donation page HERE.  Please help me spread the word.  Help me to get my voice heard.  Thank you all in advance!