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Showing posts with label donations. Show all posts
Showing posts with label donations. Show all posts

Thursday, January 10, 2013

cureLauncher

cureLauncher is a pretty neat idea.  What this site does, is create opportunities for researchers and health care workers to list the projects they're working on, so that private sectors can donate funds to help their research along.  It also lets them list their clinical trials, for every day people like you and I, to benefit from this research.

No matter how big, or how small of a donation that you can make, each and every donation will add up to help find cures for terminal illnesses.  I was blessed to help participate in a private research endeavor through my Rheumatologist back this past July.  Thanks to the private funds that were donated, a researcher at The Cleveland Clinic was able to conduct a small study looking for a certain marker in the blood of people with Fibromyalgia. I will do anything that I possibly can, to try and propel forward research on Fibro and other Chronic Pain/Fatigue illnesses. As all of us Fibromites or chronic pain sufferers know, research is key to finding a key for any life threatening or debilitating illness that's out there.  That's why I was so excited to learn about cureLauncher!

When I was asked to write a review for cureLauncher, I jumped on the chance.  Anyone who has been a part of my blog or facebook page knows that my motto is "Educate and Advocate" for understanding so that it will lead to further research, to hopefully enable a cure to be found at some point so cureLauncher is right up my alley, so to speak!  

cureLauncher is very worthy of a few minutes of your time.  Check it out, read about recent clinical trials, take a look at the current project, and even speak with a live agent while you're there!  Even with a small donation, you'll be able to feel proud that you had a hand in ground breaking research, that may save hundreds of thousands of lives over the years!  Click any words, cureLauncher, to see what all this great site has to entail!

Saturday, December 22, 2012

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!


Tuesday, December 18, 2012

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.

Saturday, December 15, 2012

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.




Sunday, November 18, 2012

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.


Friday, October 12, 2012

$1 Challenge



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

Monday, October 8, 2012

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!

Wednesday, May 30, 2012

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!