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 

Random Acts Of Kindness Challenge

I'm sure that everyone has heard of random acts of kindness, good karma, etc.  Well, I'm going to ask you all for two random acts of kindness.  First, let me tell you what has prompted this chain of thought.

I'm always passionate about wanting to educate and advocate.  I want more then anything for a cure to be found.  Heck, I'm not greedy, I'd even be thrilled if a new treatment plan was found that would help everyone universally.  Unfortunately though, I really don't feel as if that will ever happen any time soon. Not the way things sit right now, anyway.  

Why, you may ask?  I'll tell you why. Because there's still too much stigma out there concerning sufferers of chronic pain conditions.  There's too many myths and misconceptions. Too many people who think that either the pain and fatigue associated with Fibromyalgia, or CFS/ME, RA, Lupus, Osteo arthritis or ANY chronic pain condition for that  matter, is "all in our heads".  Or that we're attention seekers.  Or, that we're just lazy worthless people who doesn't want to do anything and contribute to society. My favorite reason of all though?  That we're drug addicts just looking for a way to get pills shoved at us.  Oh buddy, let me tell ya; I just love the fact that I feel like a walking pharmacy. I just love the fact that I have a few meds that I'm supposed to take three times a day, yet I'm lucky if I remember to take them three times a day - because that sounds like a true druggy right there, doesn't it?  I just love that while reading the possible side effects of taking a newly prescribed medicine, the information stated that long term use in mice, causes stomach cancer.  It went on to say though, that they had no idea if that would occur in humans or not. Boy, that sounds encouraging, right?  I kind of want to literally throw up each time I look at the foul little thing now.

Today and tonight were horrible in the pain department for me.  If I said the pain was bad, horrible, horrendous, debilitating, or any other adjective like that, it still wouldn't accurately describe the type of pain I've dealt with.  When I sit around in this much pain, even after taking meds, it tends to make me hate Fibromyalgia, DDD, IBS, and arthritis just a little bit more.  It makes me want to push and shove to demand more funding for further research. It makes me want to educate and advocate that much more.  The only hope we have, is if we can make others understand the importance of advocating for further research. To help them understand what a day in our lives, is truly like, so that they'll realize the importance of a cure or of a treatment plan that will actually work!  

This is where you all come in.  I've done the research.  I've mapped out all of the statistics.  I've put together a seminar that not only will give resources and interesting studies for those of us in attendance that suffer, but I also have material in there telling what a true day is like for us. It has material in there proving that this isn't in our heads, or that we're not seeking attention or faking because we're lazy or addicts.  Your packets share with you productive ways to help your family and friends to understand what this is really like for you.

Since I've been single for the past 9 months, and I haven't had a job in years due to my health, I can't foot the expense of getting this seminar out to the general public by myself.  I'm extending a challenge to you all, asking for two acts of random kindness from you.  One, is that if you can afford even a $5 donation to my seminar fund, that you'd highly consider making a donation.  $5 is the minimum amount that GoFundMe will accept.  The second act of random kindness that I'm asking you all to do, is to please share my mission, and link to either this post or directly to the GoFundMe page, throughout your social media sites.  If you have a blog, please extend this challenge to your readers.  If you have a facebook fan page, please link to this post on your page.  If you aren't a blogger or crafter with a facebook fan page, then I'd ask you to post it to your personal facebook page, extending this challenge to them and for them to extend it to their own friends and family as well. If you have a Google+ account and/or a Pinterest account, that you share this on those forms of social media.  If you have a Twitter account, please tweet this post and ask for RT's on it. 

At the age of 42, I know I'm not a spring chicken.  I'm also not an old duck yet either though.  The thought, that I may have to live another 30, 40, 50 ...years trapped inside my own personal prison is a horrifying thought to me.  

To feel exactly like you have the flu every single of your life, all the way down to nausea and skin that's sore to the touch.  Skin that hurts if it's even lightly brushed by someone else.  Or just like mine is tonight, that hurts when my shirt shifts over it while I'm typing this. To having sharp pains.  Stabbing pains.  Dull, deep pain.  Sunburn feeling pain.  Sore muscles, and joints that hurt.  Headaches.  Muscle spasms. The lack of energy.  The dozens of co-conditions that run with FMS.  It's just all. too. much. It's no wonder that depression is a co-condition of fibro.  Who wouldn't be depressed having to life every single day of your life like this?

Thank you all for taking the time to read this.  Thank you to those who will accept my challenge of the two random acts of kindness and passes the challenge on to others as well!

All The Small Things

You hear people say this, and tend to roll your eyes.  I know, I've done it myself in the past.  I've seen people do it too many times to count.  The little things in life, are all too commonly taken for granted.  People don't realize this though.  Even when it's told to them, they kind of nonchalantly stare past you while nodding their head up and down and grunting something that's barely audible as a "yeah".  

I'm here to tell you though, that the little things really do mean a lot.  Living my life with chronic pain and fatigue illnesses shoves just how true this saying is, right down my throat on almost a daily basis.  I said, and have written many times, that I'd give anything to have just one week, or even one day, where I could do the little things in life without paying for it with unrelenting pain and fatigue for days after.  I got my wish.  This past Thursday I had more energy then I've felt in a long time.  My pain level was low.  I honestly couldn't believe it, seeing as how I've been stuck in a pain and insomnia flare since my husband left me on April 8th.  My energy and low pain level lasted all day Thursday, Thursday night, and Friday.  Friday night though, I went to stand up and had to push & pry myself out of my chair while loudly exclaiming "Ouch!".  My knees were so stiff and hurt so badly.  Usually once I'm up and take a few steps, the pain diminishes until I go to sit down again, then the bending motion of sitting makes me say "Ouch!" one more time.  Not this time though.  My knees stayed stiff all the way to the kitchen and all the way back to my chair.  Each step caused excruciating pain.  I sat down and mentally cussed to myself that the pain & fatigue couldn't have held out for another 24 hours.  See, my youngest daughter turned 17 this past Saturday.  She was having a bonfire birthday party Saturday night to celebrate.  I held on to hope though, that I'd wake up Saturday pretty well pain free again.

I went to bed, mumbling the prayer to please allow me to wake up Saturday with energy and low levels of pain. Every year on their birthday, I allow my children to pick what they'd like me to make for supper that night.  My daughter had requested my home made broccoli, rice, and cheese casserole.  It certainly is good, but a ton of standing to chop the onion and celery, and a ton of standing and stirring until the cheese is melted.  I also had to make her birthday cake on Saturday.  Saturday rolled around, and as I got out of bed I knew I was once again doomed.  My body hurt. I was so tired that I felt like I was in a fog.  I felt as if I hadn't ever gone to sleep the night before, and like I was outside of my body watching it move around.  Regardless, I had these things to do and just had to do them regardless of how I felt.  

I've always loved baking.  I've always loved celebrating my children's birthdays.  The fact that I couldn't do things that I always enjoyed, was like a kick in the gut.  Fibromyalgia and arthritis once again had stolen my joy.  I really had to push myself to get the things done that I needed to do.  I kept angrily thinking to myself "Yeah, of course!  Of course the break in pain and fatigue couldn't have held out for one more day.".  In the middle of my self-pity episode though, I stopped myself and thought "What are you doing?  You've wrote, prayed, begged for just one day without the horrible pain and fatigue.  You got more then one day. You got a day and half reprieve from it.  Don't be greedy Amy.  Be thankful.".  That stopped me from the stomping around and feeling sorry for myself.  I even felt kind of guilty for being angry that the reprieve didn't hold out.

After pushing myself Saturday and Saturday night, I'm still paying for it today.  I'm so stinking tired.  I didn't get out of bed until 1:38pm today, and yet I feel like I'm walking around in a fog.  I can't concentrate on anything.  I've been trying to write this blog post for over an hour and a half now, and this is all I've wrote.  People take things like writing something they want to say for granted.  Things as simple as baking a cake are taken for granted.  People sometimes say "I don't feel like cooking tonight, let's just go out to eat".  The fact that they can cook if they so choose, is taken for granted.  For me and people like me, we'd give anything to be able to go stand in the kitchen and cook a meal.  To prepare the meal without it causing such pain that we are literally in tears.  People always complain about hating to do their dishes or their laundry.  At least they can do their dishes and their laundry.  

Today is Tuesday, and just from making a casserole, baking a cake, and cleaning up the mess and dishes from the casserole and cake on Saturday, I'm still paying for it today.  I hurt.  I'm beyond fatigued.  I can't concentrate.  I can't accomplish any major task today without it being extremely mentally and physically hard for me.  I'd give anything to be able to do simple, everyday things again.  Things that others look at as a chore, I'd be tickled pink to be able to do.  Until you live your life trapped within pain and fatigue, you really don't understand how little things mean a lot.  The next time you have to fold and put away your laundry, stop and think about this post.  Instead of huffing and puffing and thinking how much you "hate" doing this chore, stop and realize how lucky you are that you are able to do the chore without paying for doing it, for the next few days to few weeks.  Start thinking about your life, and appreciating all the little things that you're able to do.  They may not be "fun" tasks, they you can do them.  

Days like today, remind me why I push so hard to try and book chronic pain seminars.  Days like today, remind me why I'm so desperate to educate family members, friends, the communities and health care workers.  Lawyers, lawmakers, pharmaceutical companies, and legislature, about life with a chronic pain and fatigue illness.  As I always say, if we can't make others understand then we won't even have a prayer of finding a cure for these illnesses.  We won't have a prayer of finding a concrete treatment plan that relieves us of the symptoms that plague us.  Education is key.  As my photo below says, "Education is key.  Without education there won't be change.  Without change, there won't be research.  Without research, there won't be a cure.".   I'm not a pushy type of person at all.  In fact, there's no way I could make a living in sales.  No way.  I'm just not the type of person that could approach someone and try to push them to make them "buy" something.  I also hate confrontation.  I despise asking for help or accepting help.  Accepting help really hurts my pride and makes me feel inadequate that I needed help in the first place.  After telling you all of this, I hope you see how far out of my comfort zone I've gone, to ask for donations to help me get going in presenting my chronic pain seminar.  I hate asking for donations, and it honestly really does hurt me.  Still, I've sucked my own feelings up and I've asked for help.  I'm still asking for help.  This seminar, and the hope of finding a cure for my illnesses outweighs my own "pride".  I'm not doing this just for me though.  I'm doing it for the 1,000's of people like me, who suffer and struggle to make it through a day.  It's no wonder why depression runs with these illnesses.  Wouldn't you too be depressed, if you had to live every day in pain?  If you had to live every day being more tired then when you went to bed the night before?  If you couldn't even stop and appreciate the "little things" that life has to offer.  Once again, please share this blog and my mission with every friend, relative, business, organization, etc that you can.  If everyone would donate even $1 to the chronic pain seminar fund, it would add up quickly and I'd be able to start presenting this seminar and advocating for more research.  I challenge every person that reads this post, to donate $1 to the fund and to challenge all of your friends and family to also accept this challenge.  The link to the seminar donation page is on the right hand side of the home page or on the right hand side of the "Chronic Pain Seminar" page.  It's the Go Fund Me link.  Please feel free to download this photo and share it within your networks.  I took this photo myself (another small thing that I struggle now to do - photography) and the words are my own so there isn't any copyright infringement to worry about.