FaceBook

Wednesday, August 28, 2013

Sometimes


I try to stay upbeat & positive.  I try to always have hope.  Sometimes though, I just can't.  Sometimes, I think why bother?  Sometimes, I feel overwhelmed and like everything is just too much.  I feel that I don't have any quality to my life any more.  If I can't work.... if I can't go out and do things, and have friends to do them with.... if I have to struggle week to week....if I have to live every day so tired and exhausted that I sit & cry.... if I have to live every single day in pain.... then what's the point of life become?  I'm in too much pain to even keep my house as clean as I'd like it to be, so how could I work?  Without working, I'm poor and can't afford to go out and do things I enjoy.  Being in pain and being poor has isolated me into my house most of the time, so I don't really have many friends left.  

I sit at home alone.  I have conversations with myself, inside my head, because there isn't any one else to talk to.  I try to maintain the facebook page for this blog, but I'm not really sure how many people even read it (or the blog for that matter).  Of the ones who do, how many really give a care what I have to say?  I try to remain hopeful, that by writing this blog and having the facebook page, that I may reach people and help to educate on this illness.  I try to remain hopeful that someday soon there may be a research breakthrough and my miracle cure will be right around the corner.  Is that really hope, or is it living in a fantasy world?

As a younger adult, I've worked 3 part-time jobs while carrying 18 credit hours in college.  All while raising four kids at the same time.  Part of it as a single mom.  I went out and did things with my kids, and with my friends. I always had the money to go do things.  I've never liked being alone.  I don't know if that stems from being an only child or what, but I've always loved to be in the middle of large crowds of people.  I've always been of the mind-set "the more the merrier".  Now, I'm alone.

I did a sink of dishes earlier, and I made supper.  Nothing fancy.  Just a quick, simple, supper.  That was a couple hours ago.  Now, I'm still sitting here in such pain that it takes my breath when a spasm hits.  Hurts constantly, but the spasms are the worst.  Sometimes, I'm not brave enough to keep up the fake smile and the fake "It'll all end up ok" bs.  Because sometimes, I really just need to cry and try to figure out what the point of my life is, when I have to live it within the constraints of pain and poverty caused by pain.  Sometimes, I really just have to wonder what the point of my life really is.  All the time?  I wonder why this illness even exists.

Tuesday, August 27, 2013

Credibility


Credibility.  It's such a simple looking and sounding word.  "The quality of being believable or worthy of trust."  Even the definition sounds simple, doesn't it?  It's so much more than that, though.  It's really so in depth, that it's mind boggling.  

How do you decide if something, or someone, is credible?  Does something have to be tangible? Do you have to be able to see it or feel it, to believe in it and it's credibility?  What about God? Or religion in general?  You can't see God, but a lot of people believe in Him.  A lot of people believe in the bible.  What lends credibility to the bible, for people to believe in it?  They just do, right?

What about the credibility of people?  Or of illnesses?  Or of people who have illnesses?  What makes their feelings, their symptoms, real and credible?  Many people will answer that question with "Well the doctor saying so makes it real and credible.  Duh.  The results from their tests make it real.  What a dumb question!".  No, not really. 

Let's pretend we have four people standing side by side.  They're lined up on a stage, in front of a large audience of people.   First, we have a person who has cancer.  They have patchy hair on their head, and they're pale and have dark circles around their eyes.  They look at you and say "I don't feel good.  I'm sick to my stomach and my body hurts.  I'm really in a lot of pain today.  I'm just completely exhausted.  I have to go lay down now".  

Next, we have a person who has MS.  They're standing there with a cane.  Their eye is watering.  They say "I'm just coming out of a flare.  My face is numb, which is making my eye water because it feels funny to it.  I'm weak, and have to use my cane right now to walk.  I'm just so tired".  

The third person says "I have fibromyalgia.  My body feels like I've been beat with a baseball bat.  It hurts to turn my head, or raise my arms.  My legs ache and my back, hips, and legs hurt so bad that I can barely take a step today.  I woke up feeling just as exhausted as when I went to bed last night.  But of course, I couldn't even fall asleep until close to 5am due to the pain and insomnia that fibro causes. I don't have an appetite, and when I try to eat, I feel nauseous".  

Lastly, there stands a person who suffers from severe depression.  They say "I feel worthless.  I don't feel like I have anything to live for.  I just want to sleep.  I don't even have an appetite any more. I want to lay down and sleep and never wake up.  I hurt in my heart.  I want to be happy.  I want to go do things and have fun, but I just can't.  I don't want to live like this any more".  

After looking at these four people, and hearing what they have to say, the large audience is asked to vote as to which one of these people is the sickest and to write why they believe the way they do.  What do you think the outcome of this vote would be?  Which person is the sickest?  Which person do people generally feel the most sorry for?

Of course I haven't conducted this experiment.  This is just all personal opinion and perspective from what I've seen and heard in the world of illness. my personal conclusions though, are of course the person who has cancer is the one that's going to get the most votes.  Next, the person who has MS will get the 2nd most votes.  Even though the person who suffers from severe depression may receive comments on the forms such as "It's all in your head." ..."You could be happy if you'd just let yourself be" ...etc, they'd come in as the 3rd sickest in my opinion, and last place would be the person who has fibromyalgia.  The fibro person may garner comments such as "Quit being a hypochondriac" ...."It's all in your head" ...."Your illness isn't that bad" ...."If you were really that sick, you'd be able to tell it just by looking at you" ...."Fibromyalgia isn't even real.  It's just something someone made up to shut up all of the hypochondriac's out there" ...etc.  I could go on, and on with possible & probable comments that those cards would receive.  

My question is, what makes the person who has cancer or MS more crediable as to how they're feeling than the person who has fibromyalgia or depression?  All four of these illnesses are terrible.  All of them are their own form of a living hell.  They're a form of personal torture and take away from a good quality of life.  But why do people sympathize with the one who has cancer and the one who has MS, but doesn't believe the one who has fibromyalgia and the one who has depression?   

Tangible results are why.  Blood tests, xrays, MRI's, CT scans, PET scans, scars from surgery.  All show definitive results that something is wrong inside of the person.  Visual accountability.  They can see with their own eyes, the balding head.  The dark circles.  The scars.  For some reason, in the area concerning a person's health, people are hung up on the tangibles.  If they can't see it, they don't believe it.  In the minds of most people, if it can't be proven, beyond a doubt, then it doesn't exist.  It isn't true.  

Why people can believe in certain things that they can't "see", such as God and the bible, but can't believe in another person when they say how they feel, is beyond me.  It really saddens me and hurts my heart.  Everyone's pain is valid.  Everyone's pain counts.  Everyone who is suffering, no matter from what, deserves to be heard and to be believed.

This is one reason why research for fibromyalgia and other chronic pain conditions is so very important. New research has been pointing us in the right direction as to "proving" fibromyalgia is real, but there's still so much that we need to learn.  To make our illness credible ....to make our voices credible, we need to learn so much more.  When people do not believe us, it makes it so hard to garner the support and funds for further research.  Without that research, we will never be credible.  We're going to have to find the "why" of fibromyalgia, to be believed.  

I spent a few days last week with a person who has MS, and a healthy person, both at the same time.  The healthy person went on and on about how terrible MS is.  How I'm sooooo lucky that I "just" have fibro and not MS or cancer, or something else that's horrible.  Well, you know what?  Having fibro is pretty horrible too in it's own aspect.  It's not much fun to feel like you have a sunburn all the time on your skin.  It's not much fun to feel like you have the flu every single day of your life.  It's not fun to be in a flare where you honest to God feel like someone took a baseball bat and beat the living crap out of you the night before.  I don't like saying "ow" every time I go to stand up, or move my head.  I hate being so exhausted that I sit and expend energy I don't have to spare, crying, yet if I lay down to sleep I just lay there.  Then I toss and turn because if I lay on one side for a bit I start to hurt.  So I say "ouch" as I turn over because it hurts to move my body to turn.  Then I repeat the process a few minutes later.  Over and over for endless hours at a time.  When I wake, I feel just as tired as when I went to bed, because my brain doesn't go into, or stay in, a deep restorative sleep pattern.

When I vocalized that fibro isn't a picnic either, I was met with "Maybe not, but it isn't as bad as what poor S goes through all of the time.  She's been to four different doctors who have all proven that she has MS".  Hmmm.  Really?  I've been to several different doctors too, who all say I have fibromyalgia.  It may be in different ways, but how can you say that what she has affects her worse than what I have?  How can you discount how my body feels?  What makes her more credible than me?  

I felt like a failure, because I just couldn't get her to understand about fibromyalgia.  She just wasn't open to being educated about it.  I had to keep reminding myself, that she doesn't know much about fibro.  She doesn't know what the latest research has shown.  She doesn't hear about fibro in the news, or read about it in the papers.  We in the fibro community haven't made a big enough deal about it, for a long enough period, to demand the media attention that fibro deserves.  You see/read stories all the time, front page news, about someone with cancer.  Or some new research or therapy on the cancer forefront.  You hear/read about MS.  Honestly, how often do we hear/see/read about fibromyalgia?  Not very often.  

As a person who suffers from almost every co-condition of fibro, I feel personally responsible for getting our voices heard.  I feel personally responsible for trying to educate those who doesn't have a clue what fibro really entails.  I also feel responsible for letting every single person out there with fibro know that I'm here for them.  That they aren't alone, and that I believe in them and their symptoms.  I feel like it's up to me, to do my part in trying to educate the media and try to get them to run with the story.  If that doesn't happen, then we in the fibro community will never have the credibilty that we deserve.  Without that credibility, than we'll never garner the support financially for further research to find our why, our how, and our CURE.  If a cure can't be found, then we at least deserve a treatment plan that works universally for all of us and gives us back some normalcy.  We deserve that every bit as much as someone with cancer, or MS, or depression, or Lupus, or any other miserable, lousy disease out there.  We must start demanding the respect and credibility that we rightly deserve.


Sunday, August 11, 2013

Take The Spoon Week Challenge


Dear Readers,

A reader of Fibrotastic Mom approached her with an idea for a challenge that will spread awareness.  Fibrotastic Mom then approached me, asking if I'd be willing to jump on board, too.  Well, you all know me, anything to create awareness and education, I'm all for!  The Fibro Frog's motto is all about awareness and education, because without it, we'll never have the backing for enough research to find a cure.  Or at the very least, a concrete, universal treatment plan that works for everyone!  I'm repeating my words now for about the millionth time, so let's just move on to the challenge lol.

Starting tomorrow, through next Sunday, August 18, 2013, when you go out in public ...anywhere ...to the store, to work, to the beach, to a fair or festival or any kind of outing ....take a spoon with you.  Then, take a photo of yourself out in public with the spoon in hand, and then post it on facebook!  You can also post it on Fibrotastic Mom's facebook page (get there by clicking her name), on my facebook page The Fibro Frog, ...or on Christine Miserandino's facebook page: But You Don't Look Sick.  How cool is it that Christine, the original author of The Spoon Theory, is on board with us on this?!  She said if we post our pictures there too, that she will share them and thought this is an awesome idea!

The thought behind this idea, is to flood facebook with photos of us all holding spoons.  So then, people will ask us about it and ask why we're holding a spoon.  That's our opening to talk to them about Fibromyalgia and educate them about what a day in our lives is really like.  How we only have so many spoons to use each day, for us to make it through.  If we can get facebook flooded with these photos, just think of the awareness and education that we'll be able to spread!  This could be huge, guys!  -But it's going to take all of us to make this work.  

You are welcome, and in fact we'd love for you to steal the photo above, and turn it into your facebook cover for the week.  If you go to PicMonkey, then click on "college" on the left side, then click on the layouts tab, there's an option to upload the photo into a FB cover layout to turn the pic into a FB cover photo.  PicMonkey is free to use.  Then, make your pic of you holding your spoon out in public, your profile pic!  -Don't forget to send the photo (or upload directly if the page allows that option), to either Fibrotastic Mom, Christine's, or The Fibro Frog's facebook page.  -It would be GREAT if you'd upload the photo to all three of our pages!!  

Let's face it.  None of us like living with Fibro.  We don't like the fact that we can't be the same person who we still mentally feel we should be.  We don't like putting limits on ourselves.  Not being able to play with our children and/or grandchildren the way we'd like to.  Having to pace ourselves so we don't run out of spoons.  Not having a clear memory, or forgetting what we were doing or saying.  We don't like being as tired when we wake up, as when we went to bed.  Or having insomnia for sometimes days at a time.  We don't like the aches and pains. The sore, cramping, muscles and muscle spasms and charely horses.  We don't like Fibromyalgia numbness, or feeling like someone took a match and lit every nerve in our body on fire.  Feeling as if we live every. single. day. of our lives with having the flu.  Therefore, all of us should be willing to do our part in this fight against Fibromyalgia.  I've said it all along guys & gals.  -If we don't educate and advocate, then there will never be enough pressure to force enough research to find our cure.  Let's all jump on this, and make it the biggest, best Spoon Week that we can make it!

Much Love & Butterfly Hugs to you all,

Amy
The Fibro Frog 

Wednesday, August 7, 2013

Baby Bullet Giveaway

Welcome to the Baby Bullet Food Making System Giveaway!

Hosted by:  Savory Savings

LoveMy2Dogs and GottaGetMyBodyBack

Sponsored by: Baby Bullet

baby_bullet_set

Have you thought about making your own baby food, but decided not because you thought it would be too hard or take too much time?  Have you heard of the Baby Bullet?  It is a food puree system by the makers of Magic Bullet – but with special blades and cups just for baby food!  This easy to use machine is convenient, fun and fast!  Krista over at Savory Savings had a chance to review the Baby Bullet and has shared her thoughts on why she wishes she had this when her little ladies were babies and how she is using it now when they are toddlers! After seeing this system, I'm thinking about making our own baby food for my little granddaughter when she starts on solids! She's still just 4.5 months old right now.

Friday, August 2, 2013

My Little Princess Giveaway

My Little Princess Giveaway

Hosted by Your Royal highnesses: Savory Savings and Me, Him & The Cats

Sponsored by: Smoobee Magic No Cry Brush, My True Nature and Piggy Paint

 

This giveaway is a head to toe prize pack for the little princess in your life!  Krista over at Savory Savings had a chance to review these three amazing products with her little princesses and shared her thoughts – be sure to check them out!

Smoobee_brushStarting from the precious hair on her head, we want the little princess to have smooth and shiny hair – she can achieve luxurious locks with the Smoobee Magic No Cry Brush!  This brush has a unique two tier of bristles to get through the snarliest of hair with no problem!  Kids love them because they are customizable and come with fun princess gems to decorate!

My_true_nature_bath_duoDancing the night away at a royal ball requires a princess to look and smell her best!  Bathe your beauty with these natural, My True Nature bath products!  From body wash to bubble bath, My True Nature has everything you need in the chemical-free kids bath product realm!

Thursday, August 1, 2013

Winner's Choice Gift Card Giveaway

Welcome to the Winners Choice Gift Card Giveaway!

Extreme Saving Moms has teamed up with a great group of Small Business owners to bring you another great giveaway. And just in time for Back-to-School shopping too! Who wouldn't want to win this giveaway?! I wish you all the best of luck! 

One lucky winner will receive their choice of a $100.00 Target, Walmart, or Visa gift card!

Giveaway Details
Open to US residents age 18+
Giveaway starts August 1st and ends August 22nd at 11:59pm EST
Enter via Rafflecopter Below GOOD LUCK!
a Rafflecopter giveaway


Disclosure: This giveaway is in no way affiliated with any social media networks. The Fibro Frog is not responsible for prize shipment. For questions regarding this giveaway please contact extremesavingmoms@gmail.com