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Wednesday, October 15, 2014

Dream Team Pets

 
 
 
 



Dream Team Pets is much more than a bedtime toy-it's an innovative kid's sleep aid that helps end the bedtime battles of trying to keep your child in bed. Developed with the help of a pediatrician, Dream Team Pets bedtime routine empowers kids as they reward their Pet with stickers and a certificate for a good night's sleep. If the child wakes up from a nightmare, there are no hard feelings because the responsibility is on their Pet, but when they successfully sleep in their own bed, the kids feel a sense of accomplishment as they reward their Dream Team Pet. What makes this unique is that the kids think they are training their Pet, but really they are sleep training themselves! My Readers receive 30% Off Dream Team Pets with Promo Code: USFGUIDE
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Homemade Broccoli Cheese Soup



I love soup in the fall and winter, and broccoli cheese soup is one of my favorites.  I love this recipe because it's so simple and easy, so it doesn't completely drain me to make it.  -Unless I'm already in a flare, in which case I'm not going to be cooking anything lol.  

This is going to be supper tonight.  The recipe I use is HERE.  What's on your menu tonight?

Thursday, October 2, 2014

That Feeling Of Helplessness


That photo quote above, pretty much says it all right now.  I feel like whatever I do doesn't matter.  I feel like no matter how hard I try, I'm going to be stuck in this rut for the rest of my life.  I'm feeling completely overwhelmed.  

Every time I hear, or read, someone say "If you don't like your life, change it instead of complaining about it" I think I die a little more inside.  Way easier said, than done buddy.  Trust me.  

I didn't ask to get sick.  I never in my life wished that I'd get sick.  No matter how hard I try, I can't change it though.  I am sick, and there isn't a cure.  There isn't even a precious magic pill to make me feel better. 

I've tried to change that.  I've tried to educate and advocate for research funding so that maybe someday there will be a cure or a magic pill.  It's hard to get people to listen though.  When someone does listen, they still just can't grasp the concept of how truly horrific it is to have to live like this.

I can't make my own children understand, so how am I going to make a stranger understand?  I thought my oldest son understood, until today.  We were talking through Facebook messaging and he said "Your life is awesome".  I said "Hmm  ...I'm single without any hope to meet a man because who wants someone that's sick ..and I hardly ever leave the house to meet anyone.  I hardly sleep and when I do I feel like I haven't.  I hurt so bad that sometimes I cry.  I live off $700 a month because I can't work.  My house is falling apart.  Literally falling apart, 1/4 of the dining room ceiling fell in the other day and I can't afford to fix it.  Yep, I see what you mean.  My life is awesome".  He then replied with "Yeah but you don't have to work or go to school.  Awesome".  I was starting to get mad.  Frustrated.  Whatever you wanna call it.  I replied with "I wish I could work. I truly do. You don't have a clue how lonely my world is. I'd love to be able to make money so I could go do things, and I'd love the social interaction of being around other adults every day. I'd love to get out of the house and have somewhere to go. To be able to afford the gas to go, and feel good enough to go!

The next thing he said was "I hate it.  I just wanna sit in bed all day every day and never leave".  I told him "If you had to do that ...if it wasn't a choice ...you'd feel differently.  Believe me, it gets real old, real quick".

At this point, it slapped me in the face that even my own grown son is a DHAC (a person that doesn't have a clue).  It made tears spring to my eyes.  Then again, most things have been doing that to me lately. 

To his credit, I know he's tired and frustrated right now.  He's working 60 hours a week and going to college full time.  He's been averaging about 4 hours of sleep a day.  But man, if only my body would allow me to work 60 hours a week and go to school too.  What an awesome feeling of accomplishment and self-pride it would bring.  

I've tried getting local media outlets to listen and run a story.  I don't even receive a response.  For darn close to 2.5 years I've tried to get funding to start giving seminars on living with chronic pain.  That's failed miserably.  I've tried finding free venues to hold them so that I wouldn't need so much funding.  That too has failed.

I don't like ...no wait, I hate being overweight and I've tried to change that.  To my own credit, I have lost a bunch of weight.  51 pounds.  But I can't seem to lose any more and get to a healthy weight, because all of the stupid meds I take, make you gain weight.  You know, those meds that all of the doctors and commercials hail to be the special magic pill that will give me back my life.  The commercials flat out LIE.  People listen to them though ...when they don't want to listen to us when we try to tell them the truth of what our lives are really like.

If I was ever able to start the seminars on a regular basis, then my money problems would be gone, too.  I'd be educating people, advocating for all of us with chronic pain, plugging for research donations, and making a living for myself.  Sounds like a win-win to me.  I don't understand why society doesn't think so lol.  

The point is, I don't like my life, and I've tried to change it to no avail.  I've tried hard.  So, so hard.  All I'm left with, is the feeling of helplessness.  Feeling like whatever I do, doesn't matter.  I won't quit though.  If I have anything at all lef in this miserable life of mine, it's hope.  I'm hanging on by a thread right now, and if I give up hope, then that thread will break and I'll fall to eternity.  I've been a stubborn, strong-willed person my entire life.  Right now, I'm thankful for that.  I'm determined.  Determined to somehow, someway, turn this painful, sleep deprived, miserable life of mine into something good.  To turn the lives of all chronic pain/fatigue sufferers into something good.  

There is a difference folks, between surviving life and living it.  Right now I'm surviving.  Someday though, I'm going to live.  Someday soon. 

Thursday, September 25, 2014

Really Society? I'm Outraged



I just saw a story in my facebook feed from one of my local tv stations.  The article was about a man from Ohio that started a campaign on a crowd funding site as a joke, to raise $10 .....yes, 10 measly dollars, to buy the ingredients to make potato salad.  He ended up raising over $55,000!!  Are you kidding me?!  Over $55,000, because he wanted to make a batch of potato salad.

28 months ago, I started a campaign on a crowd funding site (GoFundMe) to try and raise $5,000 to print up materials, pay for advertising, pay for location rental, and for travel expenses, to get my seminar on living with chronic pain up and running.  Guess how much I've raised in two years and four months time?  $90.  No, not $90,000.  Not even $900.  Just ....$90.00.

According to article when funds started rolling in, he promised he'd have a big party.  So, now he's going to hold PotatoStock 2014 in downtown Columbus, OH.  But, how much of that $55,00 is even being used towards it because the article goes on to say that the Idaho Potato Commission and corporate sponsors have donated supplies for him and volunteers to whip up 300 pounds of potato salad for the event.  The event is going to feature bands, food trucks, and beer vendors.  Usually for something like this the bands donate their time, and the food trucks and beer vendors pay for a spot to set up.  To give a little credit, the article says the man used some of the money raised to aid charities that fight hunger and homelessness.  Some of the money?  How much of the money?

Whether $1 or $10,000 was used to aid some charities isn't the point I'm stumbling on though.  It's the messed up way that people, the people donating to the crowd funding campaign in the first place, think.  Essentially, this guy was asking for $10 to buy some potatoes, mayo, and onions.  Once donations started coming in he promised a party.  People went wild and donated over $55,000 so a party could be held.  I ask for $5,000 to try and help people live a better quality of life, to educate those that don't know what it's really like to live with a chronic pain illness so that hopefully we'll get enough exposure out there to aid in further research to find a cure ...or hell, I'd even take a treatment plan that actually works, and works for everybody that has Fibromyalgia, and society can donate $90 in almost 2.5 years.  What's more important to society?  Having a party, or helping to improve the quality of a persons life?  Obviously, the party wins.

Call me jealous, or spiteful, or whatever you may but I'm seriously outraged and extremely upset over this.  I've been overly emotional the past few days due to lack of sleep, pain, and stress but I honestly am holding back tears right now.  To add insult to injury, for the past two years I've messaged all of my local news stations literally begging them to mention even one sentence on the air  ...OR even just on their facebook or Twitter page, that it's National Fibromyalgia Awareness day.  Seriously, I would've been happy had they just written "Today is National Fibromyalgia Awareness Day" on one of their social media sites, but not only didn't that happen, but they didn't even respond to my message to say "sorry, no can do".  As soon as someone is going to hold a party with bands and beer though, it's a complete article!

There have been times that I'd like to make a batch of potato salad too, but haven't had the money.  There have been times that I'd like to have a dozen eggs, a loaf of bread, and a gallon of milk but couldn't even buy one of those items let alone all of them.  Do you know why?  Because Fibromyalgia and all of the co-morbidities that I have along with it, keep me from being able to work a real job.  I don't have a husband and his income to help out because a few months after I was diagnosed as having all of these life long chronic illnesses, he bailed.  I can't meet anyone new, because my health keeps me from being able to get out of the house on a regular basis.  Do I set up a page and ask for donations when I'm hungry or I'm struggling to pay my bills?  No.  I do without.  I've been raised not to ask for "handouts", and I really struggled with setting up the page for donations to start up the seminars.  In the end, I did so though because it would be helping to improve the quality of life of those afflicted with a chronic pain and fatigue illness, and it would help me to support myself.  It's something that I would only have to do for a couple hours a day, once or twice a month.  That I could handle.  I can not handle a *real* job though, not even part-time.  It's just unrealistic for my health issues.

Maybe society as a whole isn't messed up with their thinking.  Maybe I'm the one who's messed up.  I've been accused of having too big of a heart before.  Of caring too much about people.  I don't know.  All I know, is that I'm really, really sad today. Sometimes, I feel as if I'm fighting a losing battle with trying to advocate for all of us that suffer and have a normal life ripped from us.  In all honesty, I probably am. Regardless though, I'll never give up.

Tuesday, September 23, 2014

Love Is Bigger Than Hate


This post isn't about Fibromyalgia, or chronic pain, but what it is about, is showing that love is bigger than hate.  That if someone is *different*, that it's ok.  That it is not ok to judge, ridicule, or be plain mean to someone due to them being *different*.  All of us that have Fibro, or another chronic pain/fatigue illness know what that feels like.  Every single person on my blog and facebook page has been made to feel bad by someone else at least once, because we're *different* and the normals just can't seem to get it.

I'm sure you all remember reading about that poor 14-year old autistic boy that a group of kids played a prank on with the ALS challenge.  This poor kid thought he was taking the ice bucket challenge but a group of mean kids thought it'd be funny to really dump a bucket of urine and feces on him instead.  When I read about this, I was astonished at the cruelty that was displayed to this poor boy.  I was also amazed at his strength and courage to stand up and talk about the incident. 

Most of the time when we read or hear about something bad happening, we're just a bystander.  We idly sit by and think how outraged we are at the particular incident but we don't do anything about it.  Most of the time, we don't know what we can do.  This time, someone is doing something though to show this brave boy and his family that love is bigger than hate.  GiveForward has started a fundraiser for this boy and his family, so that they can see that love is bigger than hate.  

I challenge all of my readers to not sit idly by.  Make a difference in this poor boys life.  Please consider donating to this fundraiser by clicking the link.  If you can't donate, then share this post on all of your social media networks.   Don't fall into the bystander trap. All of us know what it feels like to be ridiculed.  Let's show this family how our Fibro family can send a wave across the whole world!

Tuesday, August 12, 2014

Schwan's Home Delivery



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Friday, August 8, 2014

Isolation


Sometimes, I feel as if I'm stuck inside an isolation tent.  Or, like I'm the boy girl in the bubble.  This illness is relentless and controlling, but more than the illness itself, we have to look at society.  At the "normals".  They just can't wrap their heads around what having Fibromyalgia really means.  Therefore they either unknowingly isolate us or force us to isolate ourselves.  

It truly is a double edged sword.  Most A lot of the time, we really can't force ourselves out of the bed house due to the pain and fatigue that engulfs us to our core, but on the days that we can we sometimes don't because either we don't have anyone to do anything with (since they've all strayed away from us from the times we've had to break plans or decline invites) or because the one's we have left in our lives exclude us because they think we can't handle whatever plans they've made.  A prime example of the latter, is a friend that's going camping in a newer cushy camper with soft beds and A/C.  An invite doesn't come your way then the friend says something about having not invited you because they didn't think you'd be able to tolerate camping.  Well, maybe we couldn't on that day.  But an invite and allowing the Fibromite to decide themselves whether or not they could handle it would be nice.  

You know, I'm down to only a couple IRL friends.  This illness has stolen them all from me.  The few I have left just doesn't "get it".  They have no idea the pain I truly feel on a daily basis.  The fatigue.  I put on the best show I can when I'm around them.  One time this past winter, I was plagued out of the blue (when isn't it out of the blue with Fibro?!) with sudden charley horses in my toes, back, and lower abdomen all at the same time when we were hanging out.  I had to jump up stand up as quickly as I could and I was wincing and sucking in my breath trying to stretch the cramps out.  My friend looked absolutely aghast and said "Are you ok?"  I grimmiced smiled and said "I'm really sorry.  Today is a really bad pain day".  She looked at me and said "I've never seen you like this before".  I replied with "Yeah, because I hate people to feel sorry for me so I do my best to fake a smile and push through the pain so that no ones knows how truly awful this is.  No one understands what this is like".  Within a few minutes,she wanted me to walk down the stairs to the basement and it was like that for the rest of the night.  Even after seeing and hearing, she still didn't "get it".  

Finally, there's the worry and the guilt factor if we do accept an invitation.  What if we can't keep up with the others on whatever outing we may be on?  What if we hold our friends back, or slow them down.  That's always a worry for me.  When it happens, and believe me it has, then the guilt sets in that we ruin everything for everyone around us.  

All of this combined, leaves me sitting at home almost every single day staring at the four walls.  Feeling as if they're going to close in and suffocate me.  Sometimes I feel as if I'm going to breathe in all of the oxygen that's in this house until I'm breathing heavy, hot, unoxygenated air.  Feeling so bored and lonely that the thought of passing away in my sleep is a welcomed idea for a brief stint of thought.  

There are so many ramifications to living with Fibromyalgia that normals would never even begin to think of.  Besides having a bajillion co-conditons, medication side effects, feelings of no self-worth and depression, you also have the isolation.  Sometimes, I wish that everyone with Fibro could be banished to a deserted island., because then at least we'd all have each other in one spot, IRL, to understand and communicate with.  Seeing as that will never happen, we'll have to just visualize that this little blog is the island, and we'll all have to connect here with one another.  How I wish though, that I could see all of your faces.  Hear your voices.  Hang out with each one of you, and give each and every one of you a gentle, butterfly hug.  If you're feeling isolated too, please know that you're not.  We're not.  We all have a little piece of each other.  I love you all!