Fibromyalgia Is AutoImmune ...NO! It's NEUROImmune! ..NO! It's AUTOIMMUNE! Part 1

 Oh my goodness.  I took it upon myself what? About 11 years ago?  Maybe 12 years ago?  To try to start learning every single bit of info about Fibromyalgia as I could.  I then in turn set out on a mission to educate every single person I could on this horrible, disgusting, vile disorder I could.  On the truth about it.  From the $hitty quality of living those of us with it have, to the dire need for more research to try to understand it and treat it.  To it being taken seriously by not only community and family members, but by others in the medical field as well!  

About the time I was diagnosed and cried, and refused to accept that I "really" had fibromyalgia, something there isn't a cure for, new reseach was saying that FMS had at first been thought of as being an autoimmune disease but that actually it wasn't classified as a "disease" at all, that it was classified as a "disorder".  That it actually wasn't autoimmune either, it was NEUROimmune.  It stimulated in the brain.  I cannot tell you HOW many times I wrote that. I talked that. I corrected people. I had people get mad at me and fight with me about it.  I was being treated by an internationally known rheumatologist at The Cleveland Clinic, and she taught me the current "how's & why's" of it being neuroimmune rather than autoimmune.  Let's now fast forward to July 1, 2021.  An article titled "Fibromyalgia Likely The Result Of Autoimmune Problems" in Science Daily science news rocked my world!

This college.  More specifically, this exact building/department of this college, has now changed it all once again.  Kings College London, department of psychology and neuroscience teamed up in collaboration with the University of Liverpool and the Karolinska Institute, to do a new study.  THIS study, led proof that FMS IS a autoimmune disease.  

"Professor Camilla Svensson, the study's primary investigator from Karolinska Institute said, "Antibodies from people with FMS living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings. The next step will be to identify what factors the symptom-inducing antibodies bind to. This will help us not only in terms of developing novel treatment strategies for FMS, but also of blood-based tests for diagnosis, which are missing today."

The above quote that I've pulled straight from the Science Daily article, sounds pretty good. It lends HOPE, once again.  HOPE. There's that little four-letter word, once again.  

The premise of this study, was that they injected anitbioties from people living with Fibromyalgia (from 2 different countries) into mice.  They also injected antibioties from people that do NOT have fibromyalgia, into mice.  The mice that were injected with the antibioties from people with FMS, developed clear and concise symptoms of FMS.  Obviously, the mice injected with antibioties from people that don't have fibro did not develop those symptoms.  

Now, here's where things get really interesting to me.  The mice that had been injected with the antibioties of people living with fibro, returned to "normal" once those antibioties cleared their system.  WHAT?!  You mean if the antibioties can be cleared out of the body, we wouldn't live the life we currently have to lead?  Feeling drained of EVERY. SINGLE. OUNCE. of enegry?  Being in PAIN every single day of our lives?  The sleep disturbances, the cognitive delays. Feeling like our joints have had a vat of concrete poured into them. All of that could be GONE?  Umm ...are we finally talking that a cure may be on the horizon?!  Or even as I've b!tched, moaned, begged, and pleaded for all of these years "At least a solid, universal treatment plan that would work for EVERYONE"??!  It sounds like it may be feasible, folks.  It's too unreal for me to even be able to comprehend at this point in my life.  

Umm, yeah.  More about where/why this photo of me came about, in another post that will be on a totally different subject.  I just thought the face I was  making here was a little fitting for the way I'm currently feeling at this moment haha.  But anyway, the article goes on to talk about how this could lead to having a true blood test to diagnose fibromyalgia with in the near future, as well.  If we had THAT in hand, it would be a whole heck of a lot harder for doctors to refute the reality of FMS.  Because as I'm sure most of you have personally encountered in your own lives, there are still doctors that disbelieve, everywhere you turn.  -That still sickens me as well lol.  You can read the whole article by going to THIS LINK

Now, it's been an entire 14 months to the day, since this "new" study was published.  What is the current update to this study?  What more has been accomplished in the past 14 months since this hot news hit the press?  Dear Lord, please don't tell me "there haven't been funds to continue this research" or I swear I might have a tantrum, a full blown MELTDOWN, like my 2 and 3 year old granddaughters have been known to have on an occassion.  Or two. Lol  Will I even be able to get an update on it?  That I don't know.  What I DO know though, is that I will give it my best shot to get those answers for you guys.  For myself too, who the heck am I kidding?  I want to know every bit as badly as you all do.  Therefore, I solemnly swear that I will reach out to every single person  listed in this article asking for an udate to the study.  -Every person listed in it, that I'm able to find an email contact for anyway haha.  That means that I just added another *goal* to my to-do list for tomorrow.  I have to dig for some email contacts for another area of my life, so I'll just tack these on. 

Stay tuned, my Fibro-Froggies!!  I'm praying I have more info for you, in next weeks blog post.  Keep your fingers crossed and remember to "Never give up HOPE.  Because without HOPE, you don't have anything".  

A Dose Of Cuteness

Meet Max.  Max is my mom's new Shi-poo baby.  Max likes to dig holes.  In the mud.  All the time.  This little guy is a mess, but an oh-so adorable mess!  If you're having a bad day, hopefully his muddy little mug will make you smile.

NEVER Give Up HOPE

I've said it before and I'll say it again.  I'll never stop saying it.  NEVER Give Up HOPE.  Without HOPE, we don't have anything!  

Find more support on the blog's facebook page, just click the following link: The Fibro Frog On Facebook

It's All In Our Heads

So what makes my blog a little different from others out there, is that I always keep it real.  I don't hold back and tell it like it is.  That's why I'm telling you all, Fibromyalgia is all in our heads.  Ok, ok, I know that at least a few people reading this immediately jumped to conclusions and probably started getting pissed when they just read that lol.  I don't mean it in the way that one jumping to conclusions would think.  I'm not saying it's made up or fake, I live with it on the daily.  I know how real it is.  Our pain though, is signals that reach different parts of the brain, then the brain tells us that we hurt in a certain area.

There was a new study published in Scientific Reports on January 10, 2018 that addresses the brain activity in patients with Fibromyalgia.  The study looks at explosive synchronization (ES) as the reason.  What is ES?  Well, you've got me.  I completely understand all of the scientific talk in this study don't really understand it at all.  Even googling ES and wanting to rip my hair out while gouging out my eyes reading for about an hour, I still don't really understand it.  The conclusion is that "we suggest that this could serve as a novel theoretical framework and quantitative approach to modulating chronic pain through the conversion of an ES brain network to a non-ES network using brain stimulation methods."   

This was a small, phase II study conducted at the University of Michigan. Although the study had it's limitations, it gives HOPE that maybe some day a cure will be found.  I'm just thankful that no matter how limited, some research was done.  We need so, so much more research.  If you've been a follower of my blog/facebook page for very long, you know that the lack of money and research into this uncurable monster we live with absolutely infuriates me!  

You can read this study in full, by clicking HERE

At the beginning of every year I always say "Maybe this will be the year that our cure is found."  Well folks, maybe 2018 will be the year that our cure is found.  We can only HOPE and pray.  Yes, HOPE is still my favorite word.  Without HOPE, we don't have anything.  

Love & Gentle Butterfly Hugs To You All

Another Quick Easy Recipe - Pork Fried Rice

So for the past two Tuesdays, I've been in a pain and fatigue flare and have gone to a couple of my quick, easy recipes.  I shared last Tuesday's with you, so figured I'd share tonight's as well!  Tonight, I made pork fried rice.

Pork Fried Rice

3 cups uncooked instant rice

1 bag of frozen peas/carrots mix, thawed

1 package pork stew meat (or about 4 large pork chops that you cut up)

1 medium onion, chopped

1/3 cup soy sauce

2 Tbls sesame oil

2 eggs

Cook the rice and set aside.  Put your oil (recipe calls for sesame oil but I usually use olive oil instead as a personal preferance) in a large wok-type skillet and heat it up.  Add your meat and season it however you like.  I use garlic, Morton's Season-All, and black pepper.  Stir fry the meat over medium-high heat until done.  Push the meat to the side.  Bust the eggs into the skillet and quickly scramble them, then push aside. Add your vegetables, and stir fry until hot, then push them to the side.  Add your rice, and fry it.  Mix everything together, then add the soy sauce and mix it up well, frying until everything is good & hot.

That's it!  it's super quick & easy  ....and most of all, it's delicious!!  It makes a LOT and there's always left overs that reheat very well.  My family eats off of this for a few days!  Also if you prefer chicken, just substitue the pork with cut up chicken breast.  Sometimes I do pork, and sometimes I do chicken.  

If you try this recipe out, please come back and leave me a comment letting me know what you think of it!

I'm Proud To Be A Spoonie

I'm Proud To Be A Spoonie.

I'm Strong, Independent, & 

Fearless.  I Wake Up

& Put One Foot InFront Of The Other.

I Stare Pain &

Fatigue In The Eye.

I'm A Warrior.  I

Fight Every Day

Because That's

The Only Choice I 

Have.  This Isn't The 

Life I Asked For, But

I Face It With Grace.  I

Never Give Up HOPE

Because I Am A Spoonie.

This shirt is available in a women's t-shirt, a men's t-shirt, or a unisex tank top with multiple color choices available!  The wording is printed on the back of the shirt and front is plain.  Proudly let the world know that you're a Spoonie!  Place your order, by clicking HERE!!

Adolescent Fibromyalgia Research Study Enrolling Today

Thank you for being a reader of The Fibro Frog. I am writing to share some information about a clinical research study that may be of interest to you. Research studies contribute greatly to the overall progress in understanding and treating diseases and The Fibro Frog supports that mission.

Adolescent Fibromyalgia Research Study Enrolling Today

Does your child suffer from widespread, unexplained body pain that impacts their daily routine?

If so, local research study doctors are studying an investigational medication to see if it can help manage symptoms associated with juvenile fibromyalgia in adolescents.

If your child is between 13 and 17 years of age, and has juvenile fibromyalgia or is experiencing unexplained aching, stiffness, fatigue, or trouble sleeping, he or she may be eligible to participate in a clinical research study.

• No-cost investigational study drug
• No-cost study-related care from a local physician

Visit www.FibroStudy.info anytime, 24 hours a day, seven days a week.

WWW.FibroStudy.info

   

Sincerely,

Amy Mullholand

Founder of The Fibro Frog

A Catch 22

One of the most frustrating things about living with Fibromyalgia, is all of the catch-22's that come along with it.  My current dilemma is one that I know all of you with fibro, have faced as well.  When you're in a pain and fatigue flare, you seriously cannot do much of anything.  House work is out.  When housework is out, you end up with everything piling up into a whole ton of work.  Like, a pile of laundry:

and a sink full of dishes:

When we start coming out of a flare, we have so much work to do, to try and catch up.  But ....when we do that work, we end up pushing ourselves to get it all done, and then we find ourselves right back into flare mode again.  

It's such a never-ending process that is beyond frustrating.  This is where I've found myself for the past month.  My flare the past week has been horrible.  Fatigue like I haven't felt in some time.  Pain that even occurs while trying to sleep. Causing me to toss and turn the entire night as laying in one spot longer then about 20 minutes causes pressure point pain.  Hips scream in pain.  Arms, shoulders and neck screams in pain.

Once the flare ends, I'll be stuck picking up the slack that I can't control during this flare.  So I'm sure, I'll be right back in another flare within a day or two of this one ending.  I know every single one of you with fibro can relate.  I'm venting for all of us with this post!  I'm hoping to come up with some tips and ideas to make our lives easier and hopefully break this catch-22 cycle we're all stuck in!

The Joy Of Cooking

Before fibromyalgia and all of my spinal and arthritis conditions, I loved to cook!  I never loved the clean-up afterwards, but cooking brought me such joy.  So much joy, that I even used to own a little "eatery".  I call it an "eatery" because it was inside of a mall, not a real restaurant.

As all of my conditions have worsened over the years, it's become so hard for me to really cook.  The pain is excruciating.  Some days, it brings me to tears to stand long enough to even fry an egg.  Therefore, I don't do a lot of real cooking anymore.  This truly makes me sad.  As I'm sure most of you know, fibro steals so much of our happiness.  Even the small things that people take for granted, such as cooking, are taken away.

I am SO proud, because I cooked a meal tonight.  A good meal.  I zested lemons, and chopped potatoes, and prepared 2 whole chickens.  I made lemon-pepper chicken, chunked potatoes, baby carrots, and fresh grean beans.  I had real, alive, eating, breathing people over for supper!  My daughter and her boyfriend, my son and his fiance, and a 12 year old boy who's parents are good friends of the family was hanging out with me today.  

In the middle of making this delicious meal, I was in so much pain I was fighting back tears.  Part way through the preperations I wildly wonderded what in the heck I'd been thinking, to undertake this task!  When the timer went off, I had to have my son take it out of the oven, and there's no way I could've ever carried the platter to the table so my daughter graciously did that task for me.

I hate to say it, but I was in so much pain that I wasn't even hungry.  Still, I forced myself to eat a little and indulge in the victory over fibro tonight.  I may still be sitting here hurting so badly that a handful of vicodin sounds like an amazing dessert  ....but I did it!  I beat fibro today!  I did something that I used to love to do, and I enjoyed it with my family!

**Disclaimer -the "vicodin" reference was thrown in to try to be funny, as I don't take any narcotics for my fibro at all.  I've refused them since diagnosis because I know that fibro is something I'm going to have to live with for the rest of my life and I don't want to become addicted to narcs.  I also realize that once I take one kind for so long, they'll stop working and there's only so many drugs out there.  I don't want to be in my 60's or 70's and in double the pain I'm in now, with nothing left to take because my body has built up a tolerance to all of the pain killers out there.  Some days (like tonight for instance haha) I wonder if the time has come to start taking something for pain, but alas I just pop a diclofenac 2x a day, grin, and bear it.  :)

Just Another Day In Life, With Fibro

I use this hashtag a LOT on my facebook page:  #JustAnotherDayInLifeWithFibro  because it seems no matter what is going on in my life; no matter what symptoms I have, it all can always be chalked up to "just another day in life, with fibro".  It's my feable attempt at being at sarcasm.  If I didn't just shrug and tell myself it's "just another day in life, with fibro" then I'd spend a lot more time crying than throwing my head back and laughing.  

As long as I've been sick; as many stories of others pain with this illness that I've read, you'd think I'd be use to this by now but I'm not.  Tonight, I feel as if a dagger is going through the top of my head.  My forehead and cheek bone feel as if they've been crushed into a thousand pieces.  My knees have a dull, deep ache, I keep getting sharp shooting pains in my shoulders, my middle back feels disconnected from my lower back, and just to the left of my spine in my lower back ...yeah, right where that dimple is just above the butt, is throbbing with a sharp shooting pain.  I am not, nor will I ever be, used to this.

This is one of those nights where I keep mumbling "ouch" outloud, but what I'd really like to do is throw myself down on the ground and have a good 'ole temper tantrum.  Just kick, and scream, and let the tears fly until someone scoops me up, hugs me, and tells me everything is going to be alright.  If only that would work.  

It's a hard night.  I'm in pain.  The pain is making me depressed.  I hate that I'm alone (single) because I think having a significant other in my life would help in times like this.  I DO know though, that I'm not the only one to feel like this.  I know that there's unfortunately others out there feeling the same kind of pain as I am, at this same exact moment in time.  I also know, that it's just something I'm going to have to live with because after all  ....it's "just another day in life, with fibro".  

If any of you ever have a "just another day in life, with fibro" moment please feel free to hashtag it to me.  You can find me on twitter @jaammull or on facebook at: The Fibro Frog.

So Much Excitement In The Air

Some of you may notice that a badge on the right hand side of the screen has been swapped out.  Yes, the badge naming this blog a "top fibromyalgia blog for 2014" has now been replaced a new one naming this blog one of the best fibromyalgia blogs of the year for 2015!  I can't begin to tell you how truly humbling it is to have made Healthline.com's top 15 this year.  This is 3 years in a row now.  It's absolutely mind-blowing to me that my little corner of the internet world gets noticed by someone as prestegious as Healthline.  Well, in all honesty, that it gets noticed by anyone for that matter.  

I don't know how in the world I distorted the screenshot when I cropped it down.  I tried playing with the crop to fix it but it just kept getting funkier so I just left it alone lol.  Every blog on Healthline's list, is of top quality so make sure you check them out.  There are some new ones on the list this year!  You can click the link HERE to access the slide show.

In all honesty, I have all of YOU to thank for this honor because without you I never would've had the courage or determination to keep writing this blog for the past 3 years.  

The other exciting news in the air, is that my fundraising event for National Fibromyalgia Awareness Day 2015 is this Saturday!  I can't believe how quickly the date snuck up on me!  I'm attaching a flyer I'd made up for the event, but since the design, I've had even more artists that have wanted to participate!  I still have a lot of work ahead of me before Saturday and I'm a nervous wreck about everything coming off as it should the day of the event.  -The weather forecast has me nervous all in it's own!  This is an outside event and it started off last Saturday with an 80% chance of storms for May 9th.  Then it dropped to a 50% chance.  Now, it's down to a 40% chance of storms.  I pray, pray, pray that it drops even more.  -Or if not, that we hit the 60% chance of it NOT storming.  I'm choosing to concentrate on the 60% of no storms, than the 40% of possible storms.

Monday, I will post an update to the event with a lot of pictures for you all to see!  Until then, love and butterfly hugs to all!

At Least It's Just Fibromyalgia

This post probably isn't going to gain me any popularity, but that's ok.  Those of you who know me, know that this blog has never been about popularity.  It's about speaking my mind concerning Fibromyalgia and other chronic pain and fatigue illnesses, no matter the outcome.

The friend of a friend said to me recently that she heard I have some health issues.  I replied yes, that among a lot of other things I have Fibromyalgia.  She was silent for a minute and then she said "At least it's just Fibromyalgia.  It isn't like it's something that could kill you like cancer or something."  Without missing a beat I looked her directly in the eye and replied with "I'd rather have cancer."

Eyes wide and mouth gaping open she was stunned into silence for a few minutes.  When she regained her composure she asked if I was serious.  I told her that I was completely serious.  I explained to her that Fibromyalgia is a strange illness, in that it effects people in different ways.  It has varying degrees of implications on different people.  Some people have it enough to notice it and have it be annoying, while others are completely bed-ridden from it.  I've even known of a lady who in a flare couldn't stand up and walk, and had to crawl on her hands and knees to the restroom.

Don't get me wrong, cancer is a horrible monster that causes pain, agony, and destroys lives and families.  I wouldn't wish it on anyone. So does Fibromyalgia though.  With cancer, the pain and agony is going to end.  No if and's or but's about it.  The pain and sickness will come to an end.  Either a person is cured or else they die.  With Fibro, there isn't any end in sight.  It's an entire life stuck in an earthly hell of pain, fatigue, co-morbidities, and sickness. 

In my thought process, I'd rather have the chance of a cure and at least knowing if it doesn't work that my pain will end anyway.  Yes, I'm thankful to be alive but thinking about having to live for 40 or 50 more years trapped in this hell is daunting and to be completly honest, I'd rather not.  No, I'm not suicidal in the least, I just would rather not have to live this way knowing it could be decades upon decades.  

I'm a big quality vs quantity type of person.  If I can't have a good quality of life, than I'd rather not have it span out for decades.  The diminished quality of life that I lead, has much to be desired.  It has tore apart my family.  It's isolated me from friends and family.  It's left me depressed.  The level of pain that I feel with a flare of IBS; a co-morbidity of Fibro, is incomprehensible at times.  My latest episode a few weeks ago left me screaming and my daughter ran into the bathroom just in time to see me pass out from the pain and fall from the toilet to the bathroom floor.  -And I've had four children without any type of pain relief.  I'm not just some whimp!

A couple of nights ago, I sat at my desk with tears running down my face from the pain I was experiencing in my neck and shoulders.  I finally realized that I was sitting with my shoulders pulled up as far and tight as I could.  Although that was my bodies natural reaction to the pain I was experiencing, I knew that it was only making things worse.  It took every ounce of concentration I could muster, to keep relaxing those muscles and allowing my shoulders to go back down to a natural position.

My daughter kept begging for me to make a box of brownies.  Last night as tired and fatigued as I was, I decided to make them for her out of the guilt I was feeling.  I had to stop stirring the batter several times due to the pain and cramp in my hand.  Twice while trying to stir the batter I had to stop and grab the bar on the stove, and slowly bend over stretching my back due to the pain I was experiencing from standing for those few minutes.  

My symptoms are so severe and I have so many co-morbidities that I'm deemed disabled and I'm unable to work.  That further restricts my contact with other adults and the outside world.  It leaves me poor, as I live on less than $750 a month.  That means that not only can I never vacation - oh how I dream of a week long vacation on a beach somewhere lounging around in the sun, splashing in the water, and sitting in a hotel hot tub.  Eating out and not having to cook or do dishes - but I struggle to put clothes on my back and food in my house.  Eating out is a rare luxury.  I've decided to try to see a movie at the $3 afternoon rate once a month, so that I can have something to look forward to and to do.  Of course, it'll all depend on how I'm feeling that day.

Every single day, I have 12 or 13 meds that I have to take.  A couple are once a day, but most are two to three times a day.  I hate taking meds with a passion.  Even as a teenager I'd suffer through pain instead of taking a Tylenol.  

At times, I'm left feeling stupid or embarrassed due to Fibro Fog.  For those that don't know, Fibro Fog is the name given to the cognitive delays one can experience with Fibromyalgia.  I'll be in the middle of speaking (or writing) and forget what I was even talking about, let alone what I was going to say.  I'll walk into a room and forget why I went into the room.  Shortly after starting this post, I went into the kitchen to make a cup of coffee.  I opened a bottle of water to dump into my Keurig, and found myself instead pouring it into my coffee cup.  It made me mad and disgusted with myself.

Insomnia (leading to sleep deprivation), another wonderful co-morbidity of Fibro.  It literally rules my life.  I've been awake for 36-48 hours at a time.  I've been so tired that I've literally cried.  Not getting the proper rest leads to more pain and depression.

Not every person with Fibromyalgia experiences it as severly as I do, so please don't read this and think this is definitely going to be your life.  On the other hand, some people with Fibro experiences symptoms more extreme as I do.  Such as the lady who had to crawl to the bathroom.  There's just no way to guage how it's going to effect a person.

All of this combined plus more that I didn't even delve into, leaves me saying yes, I honestly would rather have cancer than fibro.  Given the choice, I'd choose neither.  I'd choose to be illness-free.  I'd choose to be healthy and happy and a productive member of society.  That isn't the road that God chose for me though, so I'll awake every day.  I'll go through each and every day with as much optimisim as is possible.  I'll make the best of each day as is possible, and do the best I can.  I hope this post doesn't offend anyone and if it does I'm sorry ...but I won't apologize.  These feelings are mine.  They're real, and I own them.

Healthline's Best Health Blogs Contest

Healthline is running a Best Health Blogs Contest and I was honored to be nominated!  For the next 32 days voters can cast a vote once a day.  First place is $1000, second place is $100, and third place is $50.  If you've enjoyed my blog and facebook page, I ask that you cast a vote for me each day through January 15th.  It's simple and quick.  Just click HERE then in the search bar type The Fibro Frog, then click on the magnifying glass.  That will bring my entry up.  Then, just click "vote".  That's it!  :)

Thanks in advance for voting for The Fibro Frog and sharing the link for more votes!  Sending gentle butterfly hugs to you all!

Love,
Amy

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. 

Drugs

I hate drugs.  I've always hated them.  Even as a teenager, I'd rather moan and wriggle, and exclaim that I was going to die, than to take a stinking Tylenol or two for period cramps or a headache.  I really don't know what my hang-up has always been about them, but it used to make me half sick to my stomach to even swallow one.  To even think about taking drugs of any kind.

I've exlaimed to both my family doc and my pain management doc, that I refuse all narcotics until the day comes that I can't move or walk and just absolutely have to have them to drag my butt out of bed.  In all honesty, I'd rather cry (and I have many times) due to pain then to gag down some stupid narcotic that eventually would make me become addicted to it's nastiness.  

Where I refuse narcotics, I'm prescribed Tramadol for pain.  Oh let me tell you about that nasty little drug! A synthetic opiod.  A non-narcotic. They can say it's a non-narcotic all they want but I think the effects of it is just as bad.  I have to feel as if I'm about to die, to swallow one of those evil little white pills.  

This afternoon, the pain was so intense that I thought about it for a little while.  My thought process went something like this: "Ouch! Cuss words in my head.  Am I gonna die?  Cuss words in my head.  Should I take a Tramadol?  -Or would I be better off not to take a Tramadol and see if the pain actually does kill me?  Let's think this through.  Death?  Tramadol?  Death?  Tramadol?  Hmmm  ...ok, I guess I'll take a *!^* Tramadol."

After about 20-30 minutes of swallowing the dumb thing, I started getting cotton mouth.  A few minutes later, I started feeling jittery inside.  About 10 minutes after that, I felt like I was completey wasted, fubar drunk.  Then, the jittery-ness became even worse yet.  Next, the drunk feeling subsided a bit but my insides still felt jittery.  I felt nauseous and had a dull headache.  I was sitting here just zoning and kind of felt like I was outside of my body watching it.  I'm still in the last phase of the nausea/headache/zoning/feeling like I'm outside of my body.  

What is that they say about hindsight?  -If I had it to do over again, I never would have taken the damn pill earlier.  I would have taken my over dramatic chances on the pain causing death and dealt with it.  The Tramadol doesn't take it all away for me anyway.  I don't see how people can be druggies.  For the life of me, I can't understand why someone would want to feel like this.  How in the world can they like this type of feeling?  I just do not get it.  

Sometimes, it all feels like a cruel joke to me.  If anyone should be a druggy, it should be me to take away my pain ...but I detest it more than anything!  It feels ironic to me, and I picture some evil, sadistic person sitting around laughing about it after cursing me to suffer from a debilitating chronic pain illness and cursing me to hate drugs.  

Why, oh why isn't there a cure for Fibromyalgia?  My opinion of that answer is because not enough people know enough about it.  Not enough people know the truth about it.  It isn't important enough to non-sufferers to want to provide funding for further research.  That will never change unless we the sufferers change it.  Everyday I ask myself the question "How can I change that?".  The only conclusion I can come up with is to keep opening my big mouth.  Keep sharing the realities of our daily lives.  Keep trying to get the word out.

I've been plagued with pain, insomnia, and depression flares over and over for awhile now.  I've thought "What does it matter if I blog or update the facebook page because my little big ole mouth isn't going to make a difference. Who's going to listen to me or care what I have to say or how miserably pathetic my life has become because of this illness".  I've even contemplated giving up the blog and facebook page. As you can see on both here and the facebook page, I've let myself sit and wallow in a miserable puddle of self-pity but the effects of this damn pill today has pulled my head out and made me start "trying" again.  If nothing or nobody else, I've been letting myself down by not blogging or updating facebook.  If I suffer daily with Fibromyalgia and I won't try to get the word out about it, then how in the hell can I expect other people to do it?  I can't.  

My blog, my whines, my cries, my pleas and begging may never help lead to a cure or understanding and compassion concerning Fibro but doing nothing certainly will not get it done.  No one outside of this blog may ever know who I am, or what I've endured in my life but at least with this I know I've tried.  My children will know I tried.  I'll know that when I'm dead and gone, my children will know that I went with dignity and never giving up hope.  They can be proud of me that I didn't just give up and lay down without a fight.  I stood up for myself and the millions of others out there, that suffer every single day of their lives.

Will you all fight this fight with me?  Will you do everything you can to create awareness and demand further research?  Let's do this together!  Let's roar!  

The Beat Down, Defeated, Flu Feelin' Fibro Blues

That moment when every. single. muscle. in your body hurts.  When you're sitting perfectly still, yet you get sharp stabbing pain in random places.  It leaves as quickly as it comes, yet when it comes it makes you wince.  The time when it feels as if there are weights attached to your hands ...you can actually feel the heaviness and pain in your shoulders, as if your arms are being tugged downward.  

A time when you're hungry, so hungry, that you actually feel nauseous, yet there is no way you have the energy to go fix something to eat and you know that even if you could muster the energy to spread some peanut butter on bread, or throw something into the microwave, that the pain that would come with it isn't even worth satisfying the hunger. A time when your joints ache, and your skin burns, and you feel like you have a fever ....you're sure you probably have a fever until you grab the thermometer and see that you don't. 

Your joints hurt to move them.  You have a headache.  Your skin is sore to the touch.  You're achy.  You feel like you have the flu, but you know that you don't.  

You're entire body from head to toe, feels like you met a monster in a dark alley, that took a huge club and beat you with it.  Slamming it down over and over while you curl up in fetal position, praying you'll live.  Then you realize that a monster is beating you down in a dark alley.  The monster has a name, which is Fibromyalgia.  It even has a couple of nicknames.  One being Fibro.  Another, even shorter yet, is FMS. 

After searching high and low to find something to defeat this monster with, you realize that there isn't anything.  Nothing known to man can beat this monster.  You realize that there isn't anything you can do, to defend yourself.  It's going to follow you for the rest of your life, and when you least expect it, it's going to start beating you again and again.  Over and over until you wonder if you'll survive.  At times, you'll even wish you wouldn't survive, so that you could finally escape the wrath of pain and fatigue.  So that you wouldn't have countless endless days ahead of you, feeling like this.  

A lot of people don't believe in monsters.  They tell you that it's all in your head.  The Fibromyalgia monster is no different.  Some people don't think it exists.  They tell you that it's all in your head.  That makes it even scarier.  It gives the monster power over those that it's attacking.   

All of this combined wears a person down.  Slowly but surely, you start to feel sad and depressed.  You feel defeated.  You feel like a failure in life, due to the many limitations that this monster imposes on you.  It steals your friends.  In some cases, it steals your family.  It takes away jobs which takes away self-worth and self-esteem.  This my friends, is what I call "the beat down, defeated, flu feelin' Fibro blues".  This is where I'm at tonight.  Cowering from the monster.

April's Off To A Great Start With Play2Shop

I've been in flares with pain, insomnia, and depression for weeks now, so I've been spending a lot of time on the game site to help me take my mind off of things.  Here it is only April 1st, and I've already accumulated 4 first place tournament wins, and 2 auction wins.  I had several 2nd and 3rd place tournament wins for points too that doesn't show in the "rewards" section of my dashboard.  Take a look at the screen shot below, to see what my wins are so far, when the month has just begun!

If you'd like to play FREE games without any downloads, shop for cash back, use free points you earn from playing games to bid on auctions, trade in points for rewards, or have something to do to take your mind off pain or pass the endless hours of insomnia, then click HERE to sign up FREE!  Make sure you verify your email address after you sign up!  If you don't see the email verification in your email, make sure to check your spam folder!  I honestly can't tell you what a blessing, for many reasons, P2S has been for me!!

Win A Samsung Galaxy Tab 3

Hosted by:

NYSavingSpecials

Co-hosted by:

The Stuff of Success, MOMenvy Blog, 

Crazy Stepford Wives, 

DownshiftingPRO - Your Family, Your Home, Your Life, 

The Neighborhood Moms, Purple Monster Coupons, 

Simply Sherryl, Capri's Coupons, 

Barbara's Beat, Writer Wonderland and Charis by Design

My son and daughter both have this tablet, and love it! This is a great prize for whoever wins! One lucky winner will win

a

Samsung Galaxy Tab 3 10.1 – 16GB – White with one year insurance

Dates:

March 5 12:01am to March 26 11:59pm

All entries are optional

Continental US resident only

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Disclaimer: The Fibro Frog is not responsible for the awarding of the prize.  If you have any questions about this giveaway, please email the host at nysavingspecials@gmail.com