Monday, August 13, 2018

Random Thoughts To End 2017


Well, another year is almost gone.  Us Fibromites still don't have a cure.  There still isn't enough research.  There isn't enough funding for research.  All we can do, is continue to educate and advocate until all of the above changes.  Like I always say, the more people that know the truth about what all we have to suffer with on the daily, the easier it will be to one day have enough funding.  If the wealthy, companies, and corporations don't fully understand how horrific this illness can be, then they won't be as inclined to donate towards the research. 

An apology for my absence most of this year, is needed.  I have to thank a friend of mine for kicking me in the butt, to get me back to blogging again.  I really don't have an excuse for my absence.  I think I was just kind of burned out and depressed.  I had thoughts of "what does it matter", "who really reads this junk anyway", and had received some messages from crazies slamming and blasting me.  In the long run, I've received way, WAY more messages from my fellow Froggies, thanking me and telling me how much I've helped them.  For those messages, I'm grateful and appreciative.

My main message for this entry (besides being a voice for us with fibro and other chronic illnesses, of course!) is to be kind to people.  No matter how we're feeling, we should always be kind to others.  People we just pass on the street, people online  ...on fb, or in a group, twitter, as well as our neighbor or the childhood schoolmate we only see once in awhile.  None of us, no matter how well we think we know someone, doesn't always know everything that person is going through.

I'll give you a couple of examples.  This holiday season has been hard for me.  It's the first time I've lived in this house alone, over the holidays.  I like to be a social person, so for me, this is really hard.  My Christmas tree broke last year and I had to throw it away.  -I can't have a real tree, because I'm allergic to them.  I didn't even bother to get another tree, thinking "Well, I'm here alone anyway so what's the point".  You all were here on the blog with me through my marriage ending almost 6 years ago.  I've remained single all of that time.  None of my "babies" live at home anymore.  No real point in really decorating this year.  I DID borrow a small tabletop tree from my mom though, and decorated my big 6-person dining room table.  Because let's face it, those 6 chairs and that table aren't being used anyway.  Someone giving me a simple smile or nod of the head in the grocery store, a complete stranger, makes my day.  I've posted before about how I try to make a point to smile and say hi to at least one elderly person that's walking alone in a store because you never know how it may help them.  Now, it helps me as well.  It makes me happy and feel good. 


The photo above, is of my oldest son and my youngest daughter.  In a few months, he'll be deploying to Iraq, for the Army.  He won't admit it, but I know that he has a lot of stress on him with knowing he'll be gone for a year.  He'll be gone, yet he'll still have his house payment, truck payment, house & car insurance, etc to be paid back here at home.  Worrying about him being in Iraq, is also a stressor for me, as well.


This is my youngest daughter again, with my dad.  One of my favorite photos!  My daughter, at the mere age of 22, has dealt with way more than she ever should have.  Her fiance (now EX-fiance) had been mentally abusing her for almost 2 years.   This is the same daughter that I've posted about having PCOS since she was 15.  Just as depression is a co-morbidity of fibro, it's also a co-morbidity of PCOS.  The mental abuse took it's toll until she spiraled into a deep depression where she didn't even want to live any more.  Knowing she finally had to remove herself from the toxic situation for her own health, she left him just over a week ago.  It wasn't as simple as that though.  When she tried to leave, he physically abused her.  Choking her, hitting her, stabbing her in the arm with a key, throwing her around the apartment and into things.  I thank God that she was finally able to get away without broken bones or him causing death, even.  

A stranger on the street would look at her as a beautiful, young, fun-loving girl.  They wouldn't have any idea the emotional stress she's under at this point.  There is just no way for us to gauge what's going on in someone else's life.  You say "Oh well Mr So & So is just a grouchy old man" or "Man I can't stand that girl next door" but do you know why they may be grouchy or mean or defensive?  You don't know what has happened in their past or may be happening on a daily basis to them right now.  Instead of being mean about them, or ignoring them, or trash-talking them, try giving them a wave, or a smile, or a nod, or even a simple "hi".  


It kills me to know what all my beautiful girl has endured.  Always, always be kind. You may find yourself needing someone to be kind to you someday.

As you can see, I've been stressed from the day to day happenings in my life.  We all know what stress does to us.  -It's a trigger for a flare.  I've been doing pretty good though despite everything.  I've had a few pain flares, and lately I've been fighting an insomnia flare.  All of this just makes me want to find that cure even more!

My final words for all of you this December are to have a safe, pain-free, Merry Christmas.  To always take every opportunity to educate someone about the real life of having fibromyalgia, to advocate for research and a cure and finally the words you've heard 1,000,000X, my motto for this blog, .....Never give up HOPE!   

Gentle Butterfly Hugs to Each of You!

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.  Whatis 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 HOPEand pray.  Yes, HOPE is still my favorite word.  WithoutHOPE, we don't have anything.  

Love & Gentle Butterfly Hugs To You All

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.  :)

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!  




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.


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!

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