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Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Monday, February 10, 2014

Look What Came Today!

I've had one of the most awful pain days today, but a bright spot was when my son came home from the post office with the mail.  Look what came today!


Yep, my new Keurig that I got for free from the game site!  One of the K-Cups that was in the sampler box that came with it is Celestial Seasons Sleepy Time Tea.  I've heard of it before, but I've never tried it.  Tonight, I'm going to!  

This being a horrible ...and I mean horrible, pain day, I've spent a lot of time on the game site.  It gives me something to do when I'm house-bound ...which is most of the time anymore.  My pain and fatigue levels just keep getting worse.  It also helps to take my mind off of the pain, rather than sitting dwelling on it.

There are three different prizes on auction right now that I'd like to win this time around, for gifts for my oldest daughter, youngest daughter, and oldest son.  If I win them, they'll be birthday presents this year for them.  Then, to start collecting rewards to use as Christmas presents!  Even though I like the auctions, remember that you can also use your points for "buy it now" items and not have to mess with auctions.  

Where my husband left me almost two years ago and I'm unable to work, this site with the awesome rewards they have, is helping me out tremendously!  I felt like such a low-life failure this past Christmas with the measly gifts I had for my family.  This year, I'll be able to give them presents that I'm actually proud of!

If you'd like to sign up for free and get great merchandise too, just follow this link: http://www.play2shop.com?ref=U01AQ8I000000V0

I received some flack on The Fibro Frog's facebook page from one person about posting a link to the game site on a fibro page.  Like I told her, anything I can do to help someone with chronic pain, I will do.  Over and over again.  A lot of us with a chronic health condition are on a very tight budget.  If I can help someone get some nice items without costing them, then I'll do it.  If I can help someone with a chronic health condition have a little mindless fun and help them take their mind off the pain, then I'll do it.  

I hate to lose a person over something so trivial, but I have to look at the big picture, that I may be helping someone else.  I'll always support, educate, and advocate for those with a chronic pain condition.  This is just another way to try and help give a little support.  I don't have much to look forward to these days, and waiting on this Keurig to get here gave me something to look forward to and be excited about for a change.  I hope that someone reading this will be able to feel the same kind of excitement!

Love & Butterfly Hugs To All,

Amy

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.


Thursday, March 21, 2013

Almost A Year Later, And A RAOK Challange


As Easter quickly approaches, my mind keeps wandering to a year ago.  Last year starting on Good Friday, my world came crashing down.  I remember hearing my husband's alarm clock going off, but I was too tired to rouse.  He had the day off of work, and was heading about an hour and a half South of us, to look at some public hunting ground.  He'd always loved to hunt and fish, and he said he heard there was a lot of wild turkey at this particular spot.  With turkey season fast approaching, it didn't seem odd to me at all, that he'd be going to check out hunting land. 

I laid there with my eyes closed, trying to stay enveloped in my warm, cozy, state of sleepiness.  I heard him get up. I heard him go into the bathroom and come back out.  I heard him get dressed.  Just as I was drifting back off to sleep, I remember hearing him come into the room and stoop down on my side of the bed.  I felt his breath on my face, and his soft lips touch mine in a kiss.  He whispered "Good bye, I love you".  I whispered "Bye, I love you too.  Be careful". Little did I know, that would be the last time I'd ever hear him say those words to me.

The previous night, Jason had told me he'd be home by 1pm.  Around 11:30am or so, I tried to call his cell phone knowing he'd be on his way home.  He didn't answer.  I figured he must just be delayed on starting back home, and that he'd be returning my call any moment.  An hour past, and my phone hadn't rang.  I tried his cell phone again, and the same thing.  No answer.  This time, I left a message.  This scenario went on for another couple hours.  After that, his cell went straight to voice mail.  He'd turned it off.  I was bewildered, scared, anxious. You name the emotion and I probably felt it. 

Late that afternoon, I checked our bank account online and it was empty!  I honestly started hyperventilating and crying uncontrollably.  I knew this meant he was gone.  He'd taken all the money we had, and he'd left me on a holiday weekend.  We'd been at the grocery store earlier that week and I suggested we buy what we needed to make Easter dinner, but he'd told me no.  He said that we'd go shopping for our Easter dinner on Saturday, that way we wouldn't have to freeze the ham, or have it taking up refrigerator room.  At the time, I thought that was reasonable.  In reality, he'd just screwed us out of having an Easter dinner.  -Not that I could eat much anyway being so upset, but it was screwing my kids, my family, out of an Easter dinner.

Hope.  What a small word, but one that can mean or bust anything in life.  I kept up hope that he'd show up and we'd go buy what was needed and have Easter as a family.  I kept up hope that he wouldn't be cruel enough to leave me over a holiday.  That even if he wanted to leave me, and was going to leave me, that he'd at least come home and buy what we needed to make a holiday meal for our children and us.  Our family.  

None of my calls were answered Friday or Saturday.  Our then 16yr old daughter at the time, kept sending him text messages to which he wouldn't reply.  Finally, on Easter morning at 11:30am he sent our daughter a text message that said "I'm leaving your mother but not you.  I'll be home late tonight to get my things".  He'd been cheating on me with a woman he'd met online on some game site.  I couldn't believe it. I couldn't stop crying uncontrollably.  I felt like I couldn't breathe and I honestly thought I was going to have a heart attack and just die.  That's no exaggeration.

I hastily typed a facebook status saying something about what a jerk of a guy I was married to, that he'd left me completely out of the blue, wiped out our bank account, and didn't even care that our family wouldn't have an Easter dinner this year.  Then, I ran sobbing to my bedroom and laid down in bed, not knowing or really even caring, if I'd ever get back out of bed again or not.  I laid there sobbing and gasping for breath, and must have fallen asleep without realizing it. Before I knew it I heard my dog start barking.  Then, I heard a knock on my front door and my daughter talking.  I heard her say "Oh my gosh, this was so kind of you guys.  I can't thank you enough".  I tried to hurry and get out of bed to see what was going on.  In my state, I was fumbling around and it took me a minute or two, to walk out of my room.  By the time I got out to the dining room, my daughter was standing there with grocery store bags on the table, and holding one in each hand.  

"Courtney, what's going on?" I asked.  She started lighting crying, as she'd been crying and upset about our circumstances too.  She said "Mom, that was Joe.  He said that Mandy saw your facebook status and said that no one should go without an Easter dinner.  They went out and bought everything we need to make an Easter meal and brought it to us.  All the way down to pie and whipped topping for dessert".  Once again, my tears started flowing.

What's even more amazing?  This beautiful young woman didn't even "know" me.  Her fiance, Joe, and my oldest son met in drivers ed class years before, and he'd been a friend of the family ever since. Joe wasn't living near us anymore, he was living with Mandy whom I'd never met in person.  To this day, Mandy and I talk on facebook but I've still never met her in person. 

This beautiful young woman is Mandy.



When I'm super upset, I can not eat.  I hadn't eaten anything since early Friday morning, and this was Sunday afternoon.  Knowing I was too upset to even cook, my youngest son and his fiance took the bags of food to the kitchen, and they started making us a meal.  With everyone coaxing me to eat, I managed to get a few bites of everything down.  

Although embarrassed and ashamed that I couldn't buy the stuff for our dinner myself, I was so so very grateful for what this lady did for my family and myself.  I honestly couldn't wrap my mind around it.  I couldn't believe the lengths she went to, just out of the kindness of her heart, to bless a family she'd only heard about, and read about online.  

In all honesty, which you all always get from me whether you like it or not lol, I was worried how the approaching holiday was going to affect me emotionally.  I was afraid that I'd feel my heart being ripped out of my chest again.  That the pain would come flooding back.  But guess what?  The thing that I actually keep thinking about the most, is the random act of kindness that was showed to my family.  Yes, writing this made me a little emotional.  I've blinked back tears a few times while typing this.  A year ago those tears were because he left me.  Because of the hurt I felt.  The way he left me.  Wondering what I was going to do.  This year though?  Even right tonight, while typing this, most of the emotions I'm feeling are due to Mandy and Joe showing us the unexpected love and humanity that they showed us.  

No matter how many words I write, or how hard I try to convey how grateful I am for what was done, it won't be enough.  I just can't find the words to describe how it made me feel and how thankful and grateful I was (am) for it.  I vowed that I'd always try to provide RAOK's in return for the one done for me.  I still don't have any money.  I hadn't worked in years due to my health.  I'm fighting appeals with social security to receive disability.  Our one saving grace is that I don't have a mortgage or rent payment. My house needs a lot of work, but we bought it outright with cash when we bought it.  I'd love nothing more then to be able to surprise a struggling family with a complete Easter dinner this year, but since that's financially impossible for me to do this year, I'm trying to do as many free RAOK's as I can.  


I challenge you all to provide as many RAOK's between now and Easter as you possibly can.  It doesn't have to cost you anything. Since I struggle financially so much right now (yeah, that part about not leaving his daughter?  He went from June 10th until mid-January without seeing his daughter one time, and is $5000 behind in child support.  He DID leave her too) I do what I can that's free.  For example, while grocery shopping late one night, the store was almost empty.  There was a very elderly lady in there shopping.  She met my eyes with a smile on her face and I smiled back.  She paused and said hello.  I spent over 10 minutes just standing (which oh my gosh just kills me pain wise) in one spot, talking to this poor, lonely old woman.  By the end of our conversation, she thanked me for listening and asked she could give me a hug.  Well of course!  Being hugged is honestly one of the TOP things I miss about not having my husband any more.  Another time, an elderly woman looking at something on the bottom shelf at the store. She had her eyebrows knitted down and looked genuinely concerned.  I stopped and asked her if she needed something on that bottom shelf.  She did.  I almost didn't make it back up, but I bent down and retrieved the item for her. She was oh so tickled, that I still felt good about doing it a week later.  Heck, even today it still makes me happy.  The other day at the dollar store, a lady was in line behind me and only had two items.  I told her to go ahead and go ahead of me in line.  <----That one I do a lot of the time.  Once, a man and woman were buying several packs of hot dogs.  They were on sale.  I had a bunch of coupons that when doubled, made the hot dogs free.  I approached them and told them how I had coupons to make them free, and asked them if they'd like a couple.  They were so tickled up.  -I'll admit, I kind of felt like a freak approaching them an asking if they'd like the coupons, but I'm glad I did as they were so happy about them.  My most recent RAOK, was just last week.  I again was in the Dollar General store in my tiny little village.  I have a bunch of coupons for $1 off kids Colgate toothpaste.  My store has it priced at $1.  I picked up four of them that trip for free (well ...close enough to free.  The sales tax was $0.07/ea).  A lady was in line behind me and looked pretty hard up.  She had two sweet little kids with her.  A little girl that looked around 5, and a little boy that appeared to be around 3.  I asked her if she'd like a couple tubes of kids toothpaste.  I explained to her that I got them free.  She acted bewildered, and said sure.  So I took them out of my sack and gave them to her.

I may not be able to do much, but I hope and pray that the little things I do, heck ...even by having The Fibro Frog, is making a difference to someone.  Both this blog and the facebook page ...which I'm completely guilty of posting way more there then here on the blog, bring me joy every time someone tells me "Thank you for his page.  You're page is what helps me make it through a day sometimes".  I hope that sometimes when I smile at a very elderly man, or woman, or couple in a store, that the warmth and love I have shows through my eyes and somehow touches them.  I'm not a Saint by any means.  I still have days where I sit and cry, and feel sorry for myself.  I still can get mad and have a quick temper.  Sometimes I have to really watch my mouth.  Over all though, I feel like I'm a good person, because my heart honestly is filled with a love and passion to help people.  In any way I can.  I'd always heard about RAOK, but I'd never been the recipient of one.  Until last Easter.  It completely changed me.  The pure joy it left me with, drives me to keep trying to give back.   Would you join me and possibly help change someone else's life, like Mandy did mine?  Do a RAOK.  Try it, it's fun and will leave you with a wonderful feeling inside.  





Wednesday, December 5, 2012

BedLounge Reading Pillow


Our very first product, to kick off the Holiday Gift Guide & Countdown To Christmas is the BedLounge. Now, my back pain is so bad that the only place I could sit comfortably was at my desk, in my computer chair, leaning over on my desk.  I can't tell you how many times my daughter has asked me to come sit in the living room and watch tv or a movie with her, that I just couldn't do.  Every time I'd tell her "no", I'd feel like a horrible mother.  I wanted to, and sometimes I just dealt with the pain and did it.  Overall though, it was a few & far between situation.

Another thing about my illnesses, is that they also robbed me of reading.  This really made me mad.  I was an only child and we lived in the country.  Books, or rather the characters in the books, were my friends.  I'd sit outside under a tree, and read all day long.  I'd lose myself within my imagination as I was reading.  Of course my love of books, carried over from my childhood.  For the last 12-18 months, I haven't been able to read anymore.  It now hurts me too bad to try to hold a book in front of my face and read for longer then 5-10 minutes.  When I read, I like to do so for a good 2-3 hrs at a time (you can tell that I don't have little kids anymore lol).  I even have a Kindle and they are extremely light weight, yet even holding the Kindle to read, hurts my arms, shoulders, and neck profusely.  

When I came across the BedLounge online, it looked and sounded too good to be true.  Skepticism ran through my mind.  I was so desperate to be able to read books again, and watch tv with my daughter in the living room (instead of making her come sit in the dining room where my desk is at, and watching "tv" on my computer.  I contacted BedLounge and told them I'm a blogger and asked if they'd send me one in exchange for me doing a review on it.  Thankfully, they were kind enough to send me one.  

The short amount of time it took to get to me, was unreal!  I couldn't believe how quickly I received my BedLounge.  I think my daughter was as excited as I was lol!  She helped me open the box and remove the BedLounge.   We got the minor assembly done, then she was the first to try it. She loved it!  I hurried to grab a book, then I jumped in bed with it, to see if it helped my pain level while reading.  I couldn't believe how much longer my body held out for me to read!  I can even watch tv in my living room again now!

The pillow is hypoallergenic.  It's filled with synthetic down, and cleaned feathers.  The pillow was designed by a world-renowned back expert, Dr. Robert Swezey, M.D.  The coolest thing in my opinion about the BedLounge, is that it's completely adjustable to fit you!  The headrest is adjustable. It slides up and down, plus it also rotates!  So whether you're tall, or short like me, the headrest will fit you.  There's a lumbar pillow that's adjustable, to ensure you're getting great support for your back.  The best thing ever about the BedLounge in my opinion?  The armrests!  They pivot.  You can adjust them in towards you if you'd like a little tighter fit, and if you want more room just pivot them outward.  These amazing armrests also have built in pockets in them that you can stuff full of stuff so that you don't have to jump up for anything while you're relaxing! The armrests help to support the weight of your body to reduce strain on your neck, head, and shoulders.  These amazing armrests are what allowed me to start reading and watching tv again!!  

There's several uses for this pillow. I'm going to copy/paste right from the BedLounge Website:

There are several colors that you can choose from when ordering your pillow!  They also sell BedLounge Slip Covers if' you'd like to get one.  

The BedLounge also has a sixty day risk free trial!  How can you beat that??!  Seriously though, you won't be disappointed.  The things it's allowed me to do, that I couldn't before, is worth every single penny they sell them for.  

Also, I must say that this company has been absolutely wonderful to work with.  Super polite, great customer service, super fast shipping *The pillow usually ships within one-two days of you placing your order! This pillow is a must-have for anyone who suffers from any type of chronic pain!  Let's show them how much we appreciate their awesome product that make the lives of chronic pain sufferers a little easier, and for participating in this giveaway!  Let's all go to their facebook page and "like" them to show our appreciation!  1 minute isn't much to give up!  =)  To like the BedLounge on facebook, click HERE.



*I didn't receive any cash compensation for this post, but I did receive a pillow.  Regardless, all opinions expressed on this blog are my own.  




Monday, November 12, 2012

Support Those With Chronic Pain Illnesses


Don't forget that I have a fundraising event going on through November 24th.  The sell of the key chains will help fund my seminar Living With Chronic Pain - A Patients View.  Let's help out our fellow chronic pain sufferers by ordering a key chain and sharing the event through your social media sites.  The seminar isn't just for people with fibromyalgia, it's for anyone who suffers from any sort of chronic pain illness.  It gives the sufferer tips and advice, along with ideas on how to make their family and friends, and community, understand what it's truly like to live their lives in pain every day.  It dispels myths, gives statistics, lists resources, and addresses family and community that doesn't understand what we go through.  This seminar is really geared towards not only the sufferer, but also to people who do not suffer.  It's an overall well-rounded seminar that's beneficial for anyone, whoever they may be.  Also, a person doesn't have to be a chronic pain sufferer to order a key chain.  By ordering one, you're showing support for those of us who do, and helping to bring about awareness by using your key chain.  You'll find the fundraiser on facebook as a public event.  Please check it out, and share it!  To access the fundraiser, click HERE.  Thanks for your support, there's approximately 116 MILLION people who suffer from some sort of chronic pain illness in the U.S. that thank you!