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Showing posts with label seminars. Show all posts
Showing posts with label seminars. Show all posts

Wednesday, July 24, 2013

Online Seminar: Living With Chronic Pain


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

Friday, December 21, 2012

Entry Form For Christmas Giveaway Is Live!


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

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

1. Mediflow Waterbase Pillow
2. Bed Lounge
3. Eat Smart Digital Scales
4. Maddy Moo Design Your Own Morgan Bag
5. Bag Of Hand Dipped Soap Petals
6. Fibro Awareness Bracelet
7. 26 Bird-E Towels
8. A Gift Of Cookies

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

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

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


a Rafflecopter giveaway

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, December 2, 2012

EVERY Day Should Be An Awareness Day


As I sit here with a wet, gooey feeling on my mid-back from my pain patch, I started thinking about my personal facebook profile picture.  It's one of the "May 12 Fibromyalgia Awareness" photos that go around. Maybe I'm just grumpy tonight from being so tired (I couldn't fall asleep Friday night until after 7am Saturday morning).  Maybe it's because my arms, neck, and shoulders are aching just with minor typing tonight.  Probably  Possibly all of the above, but regardless it struck a nerve gave me pause for thought.  We're supposed to create enough awareness yeah, because that's a real possibility to do any good or bring about changes by making people "aware" one day out of the year?

I'm sorry, but it kind of makes me want to scream and cry, and kick, and throw myself on the ground in true temper tantrum fashion when I sit and really think about that tonight.  Before starting this post, even though I knew the answer, I still went to page after page googling "what is" ....Fibromyalgia, Lupus, RA, Ankylosing Spondylitis, Osteo Arthritis, CFS/ME, etc.  Why would I do this besides being completely crazy?  Just to look at what I already know.  "Although there is no cure at this time ....."

No cure "at this time".  Does that mean that there will be a cure in the future?  Will it be during my lifetime?  Well, I'll tell you my honest opinion.  Although I'm hopeful, realistically I really don't think there will be a cure in my lifetime.  I'm praying that a cure will be found during my daughter's lifetime.  The reason I'm not hopeful, is because there isn't enough advocacy.  There isn't enough awareness.  If you've been around my blog for awhile, you know that one of my key phrases is "without education there won't be change".

What do I mean by change?  You could say that I mean it in the same way as awareness.  My entire mission statement for The Fibro Frog could be summed up by the words on one of the awareness photos I made up.  You'll see it below:

I just think it's so silly to expect people, as in a lot of people, to become aware of how painful, debilitating, and real these conditions are by having separate one day awareness dates throughout the year.  According to the U.S. Census Bureau, as of July 2011, there's 311, 591,917 people in the United States.  Out of over 3 hundred MILLION people approximately 6 million people have Fibromyalgia, and all of the chronic pain illnesses together tally around 116 million people, that still leaves 195,591,917 people who doesn't have a clue what it really feels like to live with an illness that causes chronic pain.  You'll find the census bureau information that I used for this post, by clicking HERE.  That still leaves one heck of a lot of people that doesn't have any clue in the world how miserable our lives truly are have any idea how hard our day to day lives really are.

195,591,917 people that by no fault of their own, just can't grasp the type of pain we live with.  195,591,917 people that are still left to believe that the pain is "all in our heads", or that "Gee, my back, feet, and legs hurt after work so I do know what these people are going through and it isn't that bad.  They're obviously attention seekers".  We can't be mad at people for thinking these things.  As angry as I start to feel every time I read or hear of someone saying that Fibromyalgia isn't real, I have to calm myself down because it isn't there fault.  They truly have no idea of the scope of pain and fatigue that we endure every single day of our lives.  That's my fault.  Our fault.  

Some of you are probably starting to get completely a little miffed at me right now for putting the blame on us, aren't you.  Seriously though, unless we can make these people understand, they will never know what a day in our lives is truly like.  How do we do that?  By educating them.  By talking to them. By showing them proof from studies that these illnesses are real.  By giving them analogies of things that they can relate to.  For instance, using the analogy of when they've had the flu.  That really is one of the truest analogies out there.  



How can you start educating people?  Simply post the truth about how you feel on your face book page.  By writing and sending a bulk email with info, examples, study and research links in it.  By spreading the message about my "Living With Chronic Pain - A Patient's View" seminar.  By talking to your community leaders, pastors, lawmakers, doctors, clinics, college campuses about booking my seminar.  If people doesn't understand what it's truly like to live like this, then it's up to us to help them to understand.  If we ever hope to have a cure found (for whatever chronic pain/fatigue illness you may have), it's going to take pressure from multiple people to demand further research.  I go over the statistics of how much government money goes towards research for us, compared to the amount of government money that goes towards research other illnesses.  Now, I'm not being crass or cold hearted.  I've had people I love dearly that's passed away due to some of these other illnesses, but the distortion in the amount of research funds for these other illnesses, compared to what we get for fibromyalgia, was staggering to me.  I had someone say to me once "Well at least you won't die from what you have, like a person with cancer might".  Again, I'm not crass or cold hearted, I'm just throwing my honest opinion out there.  I'd much rather be diagnosed with some sort of heart condition, because they have treatments that can be tried ...medicine, surgeries, etc. that can possibly lead to the person being cured.  I've long and hard with this next one, and I still feel the same way; I'd rather be diagnosed with cancer.  Again, there's treatments and therapies and surgeries that can be tried an a lot of the time the person is cured.  Yes, a person goes through pain, tremendous pain, and sickness with cancer treatment. Still though, they have the hope that they'll achieve remission and be cured someday.  Did you know that in most of the auto-immune illnesses, a lot of people take some of the very same immune suppressants that is given to people with cancer?  It's true.  Yet even though they take meds and have infusions of the same meds cancer patients have, they don't have any hope that they'll be cured.  They live with the knowledge that they're going to live in perpetual pain every single day of their lives until they die.  Not only the pain, but the fatigue, the headaches, the nausea and sickness and depression that are co-morbidities of  Fibro, or Lupus, or RA, etc.  Co-morbidities such as ulcerative colitis, IBS, chrones disease, migraines, and on and on and on.  Real conditions that hurt.  Real conditions that make you sick.  Again, for me, I'd much rather have a diagnosis of something that could be fatal because not only is there hope of being cured, but regardless, I'd know one way or another that my pain would come to an end.  On days where my pain is incredibly bad and I've been stuck in a flare for days or weeks, I sit and think about it and I'd rather know I was going to die, then to know that I have somewhere around 40 more years to live in pain, sickness, and agony.  It feels as if I've been sentenced to a life of living in a slow, perpetual hell. 


The only hope I have; the only hope we have, is that we bring about awareness to enough people that understands what a crap sandwich we've been dealt in our lives.  Enough people that's willing to help us advocate and put pressure on lawmakers and congressmen to push for more funding for more research. I really hope that none of my opinions in this post have offended anyone as that wasn't my intent.  The statements and opinions that I've expressed are solely mine.  Because I feel this way, doesn't mean that someone else with the same condition as I have, feels this way too.  As my last blog post talked about though, the number one cause of death for people with fibromyalgia, is suicide.  It's just so daunting knowing that you don't even have a chance to be healthy again.  Knowing that you'll spend every day of the rest of your life sick, hurting, and depressed. I've always been honest with all of you on this blog, and I always will be. Some people may find that honesty offensive, and I realize this, but that's who I am. If I give people nothing else, I at least give them my honest thoughts and opinions.  All of this to say please, please don't just try to bring awareness about on May 12th of every year.  Advocate for awareness every day of every year.





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.


Tuesday, November 6, 2012

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.

Tuesday, October 23, 2012

Everything Hurts


Last night was rough pain wise and it's continued through the entire day and night tonight.  I can't hardly move.  When the pain is this bad, it starts to really get me down and make me feel depressed.  Even my head, upper legs, and the back of my arms hurt tonight, in addition to my every day pain of neck, shoulders, knees, lower back, and mid-back.  I'm so sick of hurting all the time.  I just wish that I could look and feel good for one single day ...and when that day arrived have the money to take advantage of it by going shopping, out to eat, then out to a movie or live performance or something.  I want to walk around, and laugh and have fun.  I want to go out and walk through parks, taking nature photos as I go.  I used to do this.  It would hurt me, but it was doable.  Now?  No way.  I used to take my camera pretty much anywhere I went.  Now, not only can't I stop along the side of a road to walk out in the middle of a field to take a photo I may want to take, but I can't even hold the camera up long enough to walk anywhere with it.  Well, I can hold it up, it just causes me extreme pain in my arms, neck and shoulders.  So therefore, I can't still do it.  Not enjoyably anyway.

I can't convey the excitement I'd feel when I would take photos.  The excitement of getting home and downloading them all, to see what natural beauty I had captured at that particular second in the universe.  That nano-second in time that could never, ever be reproduced.  The photo above is one of those nano-seconds that I captured.  The top of the cloud looks as if it's lined with silver.  Rays of golden light opening up out of the cloud and reaching towards the sky.  As if it's a tunnel of light to heaven.  All of the rays of gold to the right side of the photo.  Like rays of golden hope.  Hope, that if I keep talking; that if I keep writing; if I keep advocating for more research, that maybe, just maybe a cure or at least a concrete universal treatment plan may be found.  If not found in time for me to utilize it, then at least in time for my daughter or others younger then me, to take advantage of it.  

It really hurts my heart, that so many people (most people) just doesn't have a clue how bad this pain can be.  I call these people DHAC's, which stands for "doesn't have a clue".  Most DHAC's are well-meaning people and aren't trying to hurt us, or make us mad, they just honestly really DHAC.  I have a DHAC in my life.  She is the sweetest woman in her early 50's and she really cares about me.  She's pretty much the only adult IRL (in real life) friend that I have anymore, and I'm pretty sure I won't even have her for much longer.  At least once every week or two she'll call me up telling me that I need to get myself out of my house.  She'll tell me how I should be going to the gym to do cardio and weight lifting with her.  The best thing that she regurgitates at me at least once a week?  "Well, you know my BFF K. that I've had for 30 years.  She has fibro and she gets around so much better then you do.  You just need to snap out of it.".  OR....she tells me over and over how there's a 60 year old woman who works out at her gym who has Fibromyalgia so if she can do it, then I certainly should be able to do it too.

See, that's the funny thing about Fibromyalgia or Chronic Fatigue Syndrome, arthritis, even auto-immune diseases such as Lupus, RA, etc.  You can line 20 people (or 50, or a 100) up beside each other and you may not hit two people who have the exact same symptoms.  You may not hit two people who are affected the same way.  They'll all have varying degrees of pain.  Some people only have a few of the symptoms of fibro and others may be affected worse by their symptoms and pain levels.  Just as when what people call "the flu" (that is actually an intestinal virus) some people have a bad case of it and some people have a less severe case of it.  Unfortunately, I have a "bad case" of Fibromyalgia.  I have all the symptoms and co-conditions.  I have the acid reflux, I have the IBS, the Fibro Fog & memory loss, the insomnia, and on and on and on.  Does this well-meaning friend honestly think that I like not going out and doing things?  No, I don't.  I despise it.  You can't even begin to understand how bored and lonely and stir crazy I go.  Days like the last few though, I don't really have much of a choice.  I always have to use the chair arms to "push" myself out of my chair and yell "ow".  The last few days it's a double "ow" because the back of my arms hurt so badly too.  

My pain has been so bad for the last two days that I'm really not dealing with it well by tonight.  Not at all.  I'm starting to feel whiny, and I keep blinking back tears.  Just typing these words made me start feeling emotional again and I had to shove the tears away.  I seriously feel as if I'm losing my mind and going mad from the pain.  It isn't like I have a little pain.  I have pain.  -I had four children natural without pain meds.  I know what pain is, and I have real, debilitating, pain.  When I was first trying to come to grips with my illnesses, I kept asking "why me?".  "Why me God?  What have I done to deserve a life filled with pain every single day?".  I always felt that God wanted me to use my sicknesses to help others who are also sick.  I thought he wanted me to educate and advocate to fight for the rights of those of us afflicted.  I felt that he wanted me to bring awareness to the table, to advocate for more research for a cure.  Now?  I'm not so sure.  I feel that if I had been right, that God would've opened the doors for my chronic pain seminars.  Maybe it just isn't the right time yet?  I don't know.  All I do know is that's where my passion lays.  I also know that presenting chronic pain seminars is the only type of work I could possibly do at this point in my life.  Due to the fact that it isn't something I'd be doing every day, along with the fact that they only take a couple of hours, hours that I could alternate standing and sitting as needed while doing it, it's the only way I can fathom to do to support my daughter and myself.  I've always heard the saying "God helps those who help themselves".  I've tried every thing I can think of to try and help myself on opening the doors to public speaking and advocacy and it still hasn't panned out.  My birthday is November 18th, and I've posted everywhere that the only thing I want for my birthday this year, is to have enough money to present at least one chronic pain seminar.  God bless those who've donated to my chronic pain seminar fund on GoFundMe, but I've only raised $75 in the four months that I've been advocating and asking for donations.  -And you guys can't imagine how hard it was for me to make the page and ask in the first place.  I really don't think there's any way for me to hit my birthday goal of having the $75 raised up enough to hold at least one seminar.  I've said before that I'm not looking for a free handout.  I'm looking for people and/or businesses that believe in me and in what I'm trying to do.  I'm looking for the help of getting started.  After the first couple, then the seminars will start paying for themselves.

The grief wheel is a funny thing.  I'm not sure that you ever get out of it.  I'm beginning to think that it's something you just keep going around and around and around on until you die.  Every time I think I've finally come full circle with it, I find myself in the questioning and angry stage again.  Then we start all over.  I'm dizzy and sick of spinning around on this silly wheel.  Enough is enough.  Unfortunately though, since doctors and scientists doesn't have a cure, or even any single medicine that will take away my pain and my fatigue, I'm just stuck here going around and around and around.  No matter how hard I have to fight to believe and have hope, I will.  Hope that a cure will be found.  Hope that research will provide answers so that medicine that works will come to light.  Hope that a door will be opened for me, and my career in advocacy will take off.  I can't lose faith of my hope, because if I do then what will I have left?  

Saturday, September 22, 2012

Education Is The Key


This represents me.  I will never stop advocating for research on fibromyalgia and other chronic pain conditions.  I will never stop trying to educate those who doesn't understand chronic pain conditions.  I will never stop trying to book my seminar, so that I can educate as many people as possible about the hell that we live with every day of our lives.  This is also me because this photo represents the beauty that I can capture with my camera.  Yes, I took this picture and many others.  I used to go out and take photos several times a week.  I was a freelance photographer.  I still take photos but nearly as often as I used to.  Now, when I do take them I can only do a few at a time because the weight of holding the camera up kills my neck and my arms.  Standing to take the photos, puts spasms in my back.  I've had times that I actually cry, because I want to take photos but my illness won't allow me to.  This photo, along with my own quote is what keeps me going.  We need to educate people about our lives living with this monster.  We need to demand more funding for research.  We have to have hope and  carry on.  So that we can someday hopefully get our lives back, and so I can start doing the one thing that brings me intense happiness and pleasure ....taking more photos of more sunsets reflecting off the water.  Serene tranquility.  Peacefulness.  Self worth.  Happiness.  Our normalcy and lives.  To get these qualities and more back, we have to educate.  If anyone has a contact that may be interested in booking my chronic pain seminar, please pass along my contact info.  If anyone knows of any businesses, groups, or even just regular people like you & I that would donate to my seminar fund, please pass this blog address on to them.  The donate button for my Go Fund Me account is on the right hand side of this blog, close to the top.  Even $1 adds up if every one contributes.  It isn't the amount of money donated, it's the volume of people who donate. Help me to help all of us. Please share this photo by sharing this blog post.  The more people who see this photo, the more awareness we're bringing to the issue.  Remember, education is key.

Thursday, September 6, 2012

Could You Pass The Rootbeer, Please?



Early this past Sunday morning, I woke up and was swallowing over and over to try and keep from throwing up.  Thank goodness that it's only about 4 giant leaps from the edge of my bed, to my toilet.  I moved quicker then I have in years!  I ended up grabbing the trash can and taking it back to my bed.  It's a kitchen sized can, 13 gallon.  It was the perfect height to match the top edge of my bed.  

From that moment on, all I did was hang my head over, with my eyes still shut, and got sick.  Over and over and over.  At 4:30pm Sunday afternoon I finally managed to crawl from my bed, to my computer chair.  I was only up for 3.5 hours before I had to go back to bed.  To say I was sick, was an understatement. Honestly, I laid on my side, crying, and telling myself that death may be a welcomed distraction willing myself not to vomit any more.  I couldn't remember when I'd ever been so sick.  I vomited so much, and so hard, that I lost my voice.  All I could do until today, was croak out a soft, raspy whisper.  Even yesterday when my parents called to make sure I was still alive see if I was feeling better, they couldn't make out what I was trying to say to them on the phone.

So, we've all heard this talk about spoons.  Most of us have read The Spoon Theory (which is wonderful, btw) and understand that we only have so many spoons each and every day to work with.  With the roasting hot sweating, then chilling, then vomiting, then groaning, then having my hip or shoulder start hurting from laying in bed so long so I'd have to slowly move while demanding praying that movement didn't make me vomit anymore, my spoons were gone.  Quickly.  My spoons for Monday were also gone.  In the blink of an eye.  Pretty much I've figured out, my spoons for this entire WEEK are gone. 

Today is the first day that I've felt slightly human again.  Good news, right?!  Well, I thought it would be good news, but no.  Now, I've been fighting a headache (possibly a sinus headache) the entire day and night.  It starts getting late and my crappy insomnia rears it's ugly head.  My neck and shoulders are throbbing.  I walked out to the kitchen to get a glass of ice water, and my mid-back had me blinking back tears of joy pain all the way back to my computer chair.  -Don't forget, my computer chair is the only seat I have in this entire house that doesn't kill my back to sit in.  My knees make me cuss under my breath holler a loud "OUCH" every time I stand.  The front of my upper legs, are throbbing with pain. I just took two Tramadol pain pills, and two Tylenol.  I also took 100mg of Amitriptyline.  Why am I whining and complaining telling you all this?  I'm telling you all this, because I'm sick of it.  Come on, I couldn't have ONE dang day and night where I didn't hurt so bad that I could lose my mind scream?

Same crap, different day.  Horrible pain flare.  Horrible insomnia flare.  I can't lie, I have had a few days here and there since April where I wasn't in excruciating, mind blowing, blood curling pain, but I've had a ton of flares, that last and last before getting a break.  Insomnia, on the other hand, has been a horrible, vile, viscous monster since April.  Every night, I sit here so tired I could literally cry.  I sit here in pain.  I take 100mg of Amitriptyline then sit and wait for it to ever kick in so that I may get a few hours of sleep.  I take the tramadol and most of the time either Tylenol or Ibuprofen in addition, then sit and pray that it at least dulls some of the deep muscular and joint aches and pains, so that I can fall asleep when the Amitriptyline kicks in. My fibro fog has been so bad this week, that I've forgotten my daytime meds two or three times.  I'm just sick to death of it all!  I feel like all I do is eat pills, sit and wait, pray they work.


Do you want to know something else that pisses me off makes me mad?  No matter what it is that someone in my household gets, I get it a hundred-million-trillion times worse then they do.  If one of my kids has a mild cold, I get bronchitis.  If one of my kids gets bronchitis, I get pneumonia.  No joke.  I sick so much easier, and so much worse, then anyone around me.  I swear, every time that I go somewhere that's super crowded I get sick.  It doesn't matter how many times I wash my hands.  It doesn't matter how many gallons bottles of hand sanitizer I use, I get sick.  A week ago Saturday we went to Fort Rapids Resort and Indoor Water Park.  We left for home Sunday, late afternoon.  One week later, this past early Sunday a.m. is when I started vomiting from some nasty bug.  


This 3am bs crap?  Yeah, it's 3am when I'm lucky, has got to stop.  I know that's part of my problem.  Did you realize insomnia lowers your immune system?  Yep, it's true. It really does.  If you do a google search on the topic, you'll get more information about it then you'd ever believe you could.  Just for a quick reference though, check out THIS link for some information on it from The Mayo Clinic.  Did you also know that studies have proven that insomnia causes depression?  Check out THIS article from CBS News.  


Now that I'm done whining like a 2 year old about my miserable, crappy life, I'll go on to a more upbeat, positive approach.  EDUCATION IS KEY!  May is Fibromyalgia Awareness Month, but September is Chronic Pain Awareness Month and anyone with Fibromyalgia knows that chronic pain is a huge part of their daily lives.  Having all these "awareness" months honestly seems like a big ole bottle of hog wash to me. If you're going to advocate and try to spread awareness, why in the heck would you just do it one month out of the year? Hmm ....something to think about, isn't it?  If we don't educate the community, the health care workers, the politicians, the pharmaceutical companies, our own FAMILIES & FRIENDS, then how will change ever come about?  We have to stand up and make everyone understand what it's like to live just one week; heck just one day, in our lives.  If anyone knows of a church or a company, an organization or a conference, or even a community, that would be interested in being educated about living with chronic pain & fatigue from a patients view, please send them to me.  I wish I could present my chronic pain seminar somewhere every single weekend.  Even if I had to crawl to the front due to a pain flare, I assure you I'd be there anyway!  Also, if you know of any person, group, business, or organization that would be willing to donate to my chronic pain seminar fund, please give them THIS link.  I'm trying to raise funds to rent conference rooms at large hotels, and advertising money, to present this seminar.  

Thank you all for listening to my whining and ranting.  It feels good to know that I'm not alone out there, but at the same time I hate to know that there ARE people out there who knows where I'm coming from and how I feel.  I hope & pray that someday in the near future we'll have a cure for chronic pain and fatigue disorders.  Or at the very least a standard, universal treatment plan that actually works!  In the mean time, since I can't have a real beer due to all of my meds, could you please pass me a root beer to drown my sorrows in? 



Sunday, July 22, 2012

Quality VS Quantity Of Life


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

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

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

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

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

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

Monday, July 9, 2012

Patience Is A Virtue



Ever since I was a little kid, I never had any patience.  I remember my mom telling me that when I grew up, I'd become more patient.  I honestly don't think that ever happened for me though  lol.  We've all always heard that "patience is a virtue" and I'm sure we've all heard the saying "good things come to those who wait".  While both of those sayings may be true, I really believe that "the best things come to those who do".  I think a person needs to combine a little patience, with a little proactiveness to achieve what they're trying to do. 

Since February, I've wanted to break into public speaking.  I've wanted to present a seminar on living with chronic pain, from a patient's point of view.  I knew that making this a new career would take a little time, so I needed to be patient while waiting on that first big break.  I also knew, that I had to keep trying to get that first big break myself, or it'd never come. 

Avenues of social media is my new best friend.  I've blogged about wanting to present seminars, and I've tweeted about it.  I even have a face bookpage for the blog that I've shared my desires on, as well as my own personal facebook page.  If I didn't get the message out there that I wanted to educate and advocate for those living with a chronic pain and/or invisible illness, then no one would know that's what I want to do.  I wasn't going to get an email out of the blue, dropping a gig straight into my lap. 



I vowed not only to myself, but to all of you as well, that I'd never give up on trying to educate and advocate for all of us.  My hope is to bring understanding about our conditions to others, so that more people stand up and advocate for more research.  I also want to reach out to those of us, that are living with an illness, so that no one feels alone.  I want to bring real statistics into play.  I want to give those of us that need them, resources to help us cope with both the physical and mental problems we face on a day to day basis.



I've remained persistant, and plowed forward with determination.  Do you know what?  It's paid off!  I finally have my first big break.  I have a large church that approved allowing me to use their sanctuary to hold a chronic pain seminar.  After I have one or two under my belt, it'll make it so much easier for me to get other gigs.  Advertising for the seminar is my next obstacle, but I'll figure it out.  The old saying "it takes money to make money" is unfortunately very true, but then again so is the saying "where there's a will, there's a way". 

There are ways to advertise rather inexpensively, and I'll be exploring those options over the next few days.  Whatever it is that you do, whether it be pray, send good thoughts, send positive vibes, please do.  I'm praying to find several cheap ways to really get the advertisement out there for the seminar, and I'm praying that I have a good turn out for it.  I more then welcome your good thoughts and/or prayers for the same thing!  I've felt all along that I became sick for a reason, and that reason is to advocate.  My persistance, determination, and tenacity is finally going to be rewarded.  I vowed I'd never stop trying, and I'm proud to say that even though it's been a long time coming, the time is finally here!  Persistance and patience finally has paid off!

Sunday, June 24, 2012

Do You Just Grin and Bear It?


Today, someone left a comment on my facebook fan page for this blog.  They pretty much said that a lot of the time, they just grin and bear it so not to make others in their family feel bad for the pain they're feeling.  She asked if any one else does this too.  My response to her, was that I think everyone that lives with a chronic pain condition does that sometimes.  

Are you guilty of doing that?  I know that I am.  I know that complaining isn't going to make my pain go away, and I hate to burden those around me by making them feel bad for me or to worry about me.  No matter how much I may want to smile though, some days I just can't.  The pain, the fatigue, the depression just becomes too much to hide.  That's okay too.  


Like the saying above, some days I do feel like I'm an actress.  I get dressed for the day, brush my hair, look at myself in the mirror and tell myself "Today I won't be weak.  I'm going to be strong, and I'm going to smile.  The pain will not win today.".  I plaster a smile on my face, even if inside I'm literally crying.  I pretend that "normal" is my life, when in reality my life is as far from "normal" as it can get.  It isn't normal to take almost an hour to unload and reload a dish washer.  It isn't normal to not be able to fall asleep sometimes for 48 hours at a time.  It isn't normal, to live in constant physical pain every day of your life.  It isn't normal to have to fight off depression each and every day.  It isn't normal to wake up feeling as tired and unrefreshed as when you fell asleep.  It isn't normal to have pain on a daily basis so bad, that you sometimes cry.  It isn't normal to have your joints and muscles stiff and achy every morning when you wake up.  I could keep going with the "it isn't normal" stuff, but you know what?  For me, and for other people who suffer from a chronic pain condition, it is our normal.  We've had to learn to accept all of this.  We've had to change our perspective of what "normal" means to us.


Sometimes, I feel like I really am just going through the motions of life.  It's just what people with a chronic pain condition have to do.  We have to adapt to what normal means to us.  If more research were to be done on chronic pain conditions, then maybe a concrete treatment plan would be found.  One that would allow chronic pain sufferers to change their perspective of normal, but to what society accepts as normal.  This will never ever happen, unless there's more funding for research.  There will never be more funding for research, unless there's a demand for that funding to be made available.  There will never be a demand for funding, if people can't understand.  People will never understand, if no one ever stands up and speaks out.  I'm willing to do that.  I want to do that.  I want to educate the world on what it's like to live a life of constant, chronic pain and fatigue.  Please consider donating to my "Go Fund Me" account, so I can start educating.  So I can start demanding, that progress in research be made for people like us.  We deserve to be able to smile on the outside, without silently crying on the inside.  We deserve to be able to go on family outings with our family, instead of staying home alone because the pain is too bad.  We deserve to be able to clean our homes, and make a meal for our family, without it bringing us to tears.  We deserve a normal life.

Saturday, June 16, 2012

Keeping My Chin Up


My appointment with my rheumatologist was this past Thursday.  I also had to have a consult with gyn while I was there, and I had some tests ordered to do that day as well.  I knew it was going to be a long day, and it really was.  I left my house around 6:30am and I didn't get home until going on 9pm.  I was completely exhausted.

Due to some of the symptoms I've been having, and the results of one of my tests, I have to go back and have an endometrial biopsy done.  I've been told that the experience isn't pleasant, at it's best.  The doctor even warned me to take pain meds about an hour before the procedure.  I'm not looking forward to it, what-so-ever.  If it needs to be though, then it needs to be done.

My appointment with rheumatology went ok.  She marked down that my condition is "deteriorating".  My pain and insomnia flares kind of told me that though.  I didn't get my huge "miracle pill" that I was hoping for. I didn't get a med change at all, except to double my dose of amitriptyline and she added a very low dose of prozac for me to take in the mornings.  She started me at 10mg, but said if I tolerate it then in 2-4 weeks to go to 20mg each morning.  She said she didn't want my body to have to adjust to too many things at once, where she'd doubled the amitriptyline.

Besides marking on a form that my health status is deteriorating, she also wrote on the form "Fibromyalgia - widespread pain, fatigue, depression, pain all over, inability to concentrate, difficulty with memory" then "depression, anxiety, a lot of stress".  Even though I knew all of this before walking into that appointment, even that my health status was worse, it still felt kind of bad to see it in writing.  I want a job so bad; I need a job so bad, and this just reinforced to me that I'm not going to be able to ever hold a regular job.  

Right before I left, Dr. Gota told me that she's helping out with a research study and asked me if I was willing to participate.  The study is being privately funded, and it's looking for a certain protein that can be found in the white blood cells of patients with fibromyalgia and chronic fatigue.  The study may provide important information on opportunities for the development of therapeutic strategies against this disease.  They'll be looking at approx. 20 patients to take place in the study.  All I needed to do was allow them to take one tube of blood from me.  Of course, I happily signed the consent form and had the blood drawn.  I told them anything I could possibly do that might help aid in either a cure or a concrete treatment plan, I was willing to do.  I constantly preach on here about advocacy and more research needing to be done.  What kind of hypocrite would I have been to say no to them? LOL  I'll admit, it excited me and gave me a ray of hope, knowing that a new study is being conducted!  We need MORE studies and clinical trials in this field.

I'm sad knowing that my health is deteriorating.  I'm discouraged about money and how to pay my bills.  I'm worried about the endometrial biopsy and what it might show.  Through all of this, I've decided to keep my chin up and do my best to have a positive attitude.  IF my biopsy comes back bad, at least they'll have caught it.  The Cleveland Clinic is also the number 1 rated place for cancer treatment in Ohio.  Those are both positives.  I may be short around $160 (more if I have to buy any more groceries between not & then) for next months bills, but at least I have enough money to cover THIS month's bills and the hope of making enough money to cover July's bills too.  -I have my older camera, a Canon EOS Digital Rebel 300D for sale on craigslist right now.  My body may not allow me to get a "traditional" job, but I can keep the faith about getting a seminar on chronic pain and/or invisible illness going.  I may have a break, a church may donate space to me for me to hold a seminar there.  I'll find out in a week or two for sure.  Then, I'll just have to come up with a cheap way to advertise the seminar.  My health sucks, to just put it out there, but no matter how bad my health is, someone else out there has it worse.  

Education, advocacy, and awareness.  I'll never stop preaching about those three words.  Those three little words are not only my ticket to a career, but also to finding a cure for this nasty illness.  The ticket to developing a concrete treatment plan that will work.  Then, none of us will have to feel this way anymore.  A positive attitude may be the difference between succeeding or failing.  I choose to succeed.  If you know of a company, business, or organization that may be interested in helping me to succeed then please pass along this blog or the link to my "Go Fund Me" page.  If I could raise enough donations to rent space and to advertise, for 2-3 seminars, then I think I'd be set.  I'm keeping my chin up.  When the time is right in God's plan, this will all come together for me.  Of that, I'm confidant.