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Tuesday, February 24, 2015

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.





Tuesday, February 3, 2015

Stigma?

Most of the time when I share or upload a picture on The Fibro Frog's facebook page, people share it.  Heck, a lot of times when I make a status saying I'm in pain, that even gets a share or two.  As I was scrolling the facebook page last night I found something interesting.  There was a picture I had shared with a ton of "likes", but not a single re share.  This is the photo:


This photo has 293 "likes" on it, but not one single share?  That really saddens me.  Most of us that have Fibro, also suffer with depression.  It's a very common comorbidity of Fibromyalgia.  I mean, who could remain happy and optimistic and NOT get depressed when their lives as they've always known them is ripped away and replaced by extreme fatigue, forgetfulness, all-over body pain, and a general feeling of malaise?  

Are we willing to talk about our Fibromyalgia, but not about our depression that accompanies it?  Why is that?  Mental illness has always carried a stigma, much like Fibromyalgia has.  Thanks to all of those that have been researching, educating, and advocating a lot of stigma surrounding Fibromyalgia has been alleviated.  Oh we still have a battle ahead of us on that front, but it has come a long way from the time that even most doctors thought it was a garbage can diagnosis.  If people aren't willing to spread the word and educate about mental illnesses too, including depression, then the stigma surrounding these issues will never go away.  

Are people afraid that if they share something like this, or talk about a mental health issue that they're going to be regarded as crazy?  Well allow me to share something with you all.  Everyone is just a little bit "crazy" in their own way.  Anyone is capable of a psychotic break under the right circumstances.  Mental illness of some sort, is a very real possibility in the lives of every human being.  Why is society so quick to judge each other?

I'm here to publicly say that I suffer from depression.  Sometimes severe depression even.  I've had days where no matter how hard I try, tears just slowly roll down my cheeks off and on the entire day and night and I feel like just giving up.  I'm lucky though, because I always seem to be able to muster a little bit of HOPE from deep down within to keep me going.  Some people with depression issues aren't that lucky and have a very sad ending.  

According to PsychCentral.com 50% of those that have chronic pain, also suffer from depression. (CLICK HERE TO READ ABOUT THIS)  The NIH estimates that Fibromyalgia affects 5 million Americans aged 18 or older.  Look at all of the other chronic pain conditions out there besides Fibro.  That's a heck of a lot of people, that also suffer from depression.  So why the stigma concerning it?

I'm going to leave you all by saying this: No one should judge another without walking in their shoes.  The less something is talked about, the more it will be judged.  We all have our own problems, but in reality we're all the same.  We're all just trying to make it through life the best we can, and remain as happy and satisfied with our lives as possible.  Please don't be embarrassed if you suffer from depression or any other mental illness.  Talk about it like you would any other health condition you have.  Help end the stigma.  Be a #StigmaFighter!



Saturday, January 17, 2015

I've Been Bad .....



Here it is, the 17th of January 2015 already.  I've been really bad about blogging.  I've kept up with my facebook page daily ...or every other day, but I've been so bad about blogging.  I'd like to blame that on the depression I've been feeling, but if I've kept up with the facebook page than that means I've just been too lazy to blog.

The truth is, I haven't had anything positive to say, but then again this blog isn't about just being positive.  It's about the REAL day to day live of someone suffering from fibromyalgia along with other health conditions.  I've been drowning lately friends.  Literally, drowning.  The pain.  The fatigue.  Feeling like my life isn't worth living anymore.

Every day, I try my hardest to put on a fake smile, and go about my day.  The truth is, that I've been sad.  So sad, that tears well my eyes almost daily.  I feel like I'm facing life alone.  Well, in reality, I am.  My younget daughter lives with me, but she works.  A lot.  She works 12 hour days, and the days she doesn't work she's with her boyfriend.  See. he's getting ready to leave for the Army ...his dad was career Navy, and he's going career Army ...so she's making the most of the time she has left with him before he leaves.  I don't blame her, I'd do the same in her shoes.  But that leaves me 100% alone all the time.

My husband left me a few months after my diagnosis with Fibro.  Said he couldn't deal with me being sick the rest of my life without a cure.  Fibro left my friends wondering why I'd cancel out on them.  They drifted away.  Eventually, I was left with nothing but my internet friends.  Fibro has robbed me of friends.  It's robbed me of a LIFE.  It's left me cold and isolated.  It's left me alone.  It stole my husband.  It stole my LIFE.

No matter how much I hurt, I had supper on the table for my husband when he'd walk in the door from work each day.  I loved him, and I loved my life.  If you go back in my blog, you'll see a post about the divorce rate in marriages of one who had a chronic illness.  You'll read my astonishment to that statistic. Just a few short weeks later, ...without going back and researching, I believe it was almost 2 weeks to the day, my husband left me and I became one of those statstics.  I couldn't believe it.  It was so surreal.

The saying that you went to a buffet to instead be handed a crap sandwich?  Yeah, that's how I feel.  I hurt every single day.  I emotionally hurt every single day.  I'm so mentally & physically tired each & every single day.  I'm not going to lie.  I wonder a lot of the time what my purpose is here on earth.  My kids are all grown.  They each have their own life now.  I sit alone 99% of the time.  No one needs me anymore.  So why am I still here?  WHAT is the purpose?  WHY do I have to hurt all the time?  Why can't I have someone who loves me? Someone who needs me as much as I need them? Why do I have to be in pain all the time? -REAL pain  ...the type of pain that most people couldn't tolerate for a day  .....let alone the rest of their life.

I'm sorry that I've let you all down.  I'm sorry that I haven't kept up with the blog like I should.  I never, ever wanted this blog to be the type that sugar coated anything.  I wanted to show the world how HARD it is to live trapped in a broken body.  So why haven't I blogged even though I feel like shit?  I don't know.  All I can say, is that I'm sorry and I'll try to do better from here on out.

Deep down I know, that even if this blog reaches ONE person that feels the way I do  ....or ONE person that doesn't live with this freaking monster of a disease & I can give them a glimpse of what it's like to be trapped in a broken body  ...that I've done what I've set out to do.  Even so, sometimes when you're feeling so alone & isolated, it's HARD to make yourself sit down and write.  I hope you all know that my lack of blogging doesn't mean that I don't care about you.  I hope you know that doesn't mean that I've given up HOPE of a cure being found.  I will never give up HOPE ...because if I gave up HOPE, then I'd be left with nothing.

If you're having a bad day   .....or week, or month  ...read this, please know you're not alone.  We're all in this together.  I may not have a lot to offer you, but I'm here.  I understand.

Saturday, December 13, 2014

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


Wednesday, December 10, 2014

Random Thoughts

So many times in the past, I've found myself wondering if I did something horrible to deserve to live with the health issues I have.  I wondered if it was some sort of punishment.  Karma.  Tonight, as I sit here with a cold or the flu that's wrecking havic on my respitory system from my COPD, my mind wanders down that path again.  

I know that's a silly train of thought.  I know what kind of person I am, and what kind of person I've always been.  I've always had a good, loving heart.  Of course I have some bad qualities, and I'm certainly not a Saint, ....but overall I'm a good person.  I've never done anything bad enough to deserve to be sitting here gasping for air.  To live in pain every day of my life.  To never have any energy.

All of that thinking leads me in circles.  Circle after circle until my brain is dizzy and spinning.  Question after question pops into my head.  Why do good people die young?  Why do some really bad people get away with murder (literally) ...or rape  ...or child abuse.  They go unpunished sometimes by the legal system.  They also sometimes go unpunished by karma.  They have their health.  They a lot of times are wealthy.  What in the world could I have done to deserve a life like this?  Is there really such a thing as karma?  I don't think there's really such a thing as karma because if there is, it isn't making much sense.  

Is it all just random luck?  I've always heard that a person makes their own luck.  I'm not sure I believe that.  Sure, a person can do things in their lives to try and help give them an advantage ...but to truly make your own luck?  I don't know.  

I end up going back to punishment again.  Maybe, it's some sort of punishment for not taking advantage of all the opportunities in life that had come my way. Maybe it really is karma.  Karma saying "You were just slumping through life instead of doing what you were meant to do, so it doesn't really matter if you live life or not".  

Ever since I was a small child, I had wanted to be a doctor.  At the age of 11, my walls were plastered with posters of the human body.  Anatomy posters.  Drug rep posters.  Any poster that my doctor had graciously given to me, that he'd received from reps.  He knew my desire to one day go to medical school.

At age 12, my doctor asked me if I'd like to start coming in on Saturdays and shadowing him, to feed my never ending desire for medical information.  I was ecstatic!  Every Saturday from 9am-12pm I'd follow him around like I was really something important, and I'd take in his every move and every word to patients.  I can not begin to tell you my excitement when one day he asked if I'd like to assist him bereaving some skin from a burn on someone's hand (after getting their permission of course).  

Then a few years later I turned into a know-it-all-snot-nosed-teenager-who-thought-she-was-in-love.  At the age of 17, I informed my parents that I wanted to take senior english and senior government through independent studies so that I could graduate that year ...my junior year of high school.  I told them I wanted to graduate a year early, and get married in June right after graduation.  I had plenty of credits to graduate a year early, I just needed to have the mandatory english and government credits to do it.  

My parents about had a heart attack when I sprung this on them!  In my typical defiant teenager way, the tears started spraying and I started yelling at them that if they wouldn't sign for me to get married in June, that 5 months later when I turned 18 my boyfriend and I would just run away and get married.  Why my parents gave in to that tirade, I still don't know.  They finally agreed.  

Boy were we stupid.  He was a senior (where I was a junior) and he'd been accepted into an amazing college where he was going to major in engineering.  I had wanted to go to college for pre-med ..then eventually med school.  Instead, without a pregnancy even involved, we opted to throw that away in the name of love, and marry so very young.  Five months later, on my 18th birthday exactly, a doctor told me I was pregnant.  There went any dreams of college for either of us.

I worked hard throughout my life, but I was never very successful at anything. Without a proper secondary education I was at a huge disadvantage.  I worked one minimum wage job after another.  My marriage lasted for about 5 years, and 2 kids.  

That leads us to today.  I'm sitting home alone with my body killing me, coughing a lung up, running a fever, gasping for air, writing to you, and wondering why I've been dealt a crap sandwich for my health.  I'm never going to get the answers to my questions.  I'm never going to know why I have to live my life sick and in pain.  The only thing I *can* do, is keep smiling.  Keep hoping.  Keep believing.  Keep believing and hoping, that one day there will be a treatment plan.  

Hold on to hope everyone, and always try to smile.
   

Monday, December 1, 2014

Just For You Review Link Up


 
Melissa Say What?
Along with Rahab to Riches & The Fibro Frog blogs are hosting a Product/Book Review Link Up. You'll for sure want to take a look at this with the holidays coming! Find some great gifts that you wouldn't have thought of!
 
Tweet it! Share it on Facebook!  Give it a post on Google +!  Anything you can do to get the word out.  
 
Link Up your review post below.  For now we will not be limiting the posts and review/giveaway combo posts are perfectly fine.
 
 
 

Saturday, November 29, 2014

Put Me Out Of My Misery


OMGosh, felt it definitely is.  This morning it awoke me, feeling like a chain-saw was gouging into my leg.  The weight of the blanket touching it was excruciating.  My leg was so swollen, that blood under the surface of the skin, was ready to break through where the top of my sock was lying.  It's a dark crimson color.  As much as I like that color, it looks pretty ugly in a line on my leg. To lightly brush over it with my hand, felt like a million teeny tiny needles pricking me.  

My eyes feel like thousand pound sandbags are attached to them, trying to pull them closed.  I'm so stinking tired that I can't stand it.  I can't go to sleep though, because my 3yr old granddaughter came to stay with me Thursday evening, and she'll be here until Wednesday.  I thought about calling my son and telling him he has to come pick her up now, but I don't want to give in to Fibro.  My granddaughter is my everything and I haven't been able to see her for about a month.  She makes me happy and gives me a reason to go on.  I'm not letting physical illness steal this joy from me.  It takes everything else.  Besides, I don't want to live my life in bed.  That isn't a life.  It's just existing.

My doctor won't pin the CRPS label in my file.  She said it probably is, but all she knows for sure, is that when I had cellulitis about 1.5yrs ago, the infection caused permanent damage to the nerves and muscles in my leg.  It's the classic symptoms of CRPS, down to the pink, mottled, shiny skin.  Hair doesn't even grow in that area anymore ...not that I'm complaining about that though haha!  

The type of pain that awoke me today was a screaming, angry, more than demanding pain.  It's this type of pain, that allows my HOPE to slip.  This type of pain, makes me wobble on the line of depression.  It makes me think thoughts such as "at least when I die, I'll be out of this misery".  

Once my thought process goes down that line, I start to get angry.  Angry that with all of the advances in modern medicine, there isn't any more known about these types of conditions.  Angry that a medicine hasn't been developed that will treat fibromyalgia, CRPS, CFS/ME, Lupus, RA, and the list goes on and on.  Angry that there isn't a cure.  Angry that not only me, but so many others have to live exist like this for the rest of their long lives.

Every time this happens, it fuels my fire for education and advocacy.  I'm still of the firm belief that if the unaffected world is educated enough on what we go through, then the demand will be high enough for further research.  That private donations for research will come through.  Maybe I'm just living in denial, I don't know.  What I do know, is days like this is what will keep me advocating until the day I die.

On a positive note, I'll leave you with a photo of my 3yr old granddaughter sleeping peacefully the other night ....thank God NOT in pain.