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!


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.

Wednesday, November 12, 2014

I Need Heat!

I detest asking for any kind of help when it's for personal reasons, but I don't have a choice.  With my health conditions, going outside in the winter is hard enough on me, let alone living in a cold house, without a working furnace.

A couple weeks ago I went to bed with the furnace working fine.  The next morning when I woke up, it was chilly in the house.  I turned up the heat to take the chill off, and nothing happened.  I then realized something was wrong with the furnace.  

I have a friend that lives in another state and her husband owns a HVAC shop.  Her husband called me, and tried to walk me through some steps to see if he could figure out what the problem was.  He deducted that it wasn't something simple and said I'd have to have a technician come look at it.

After posting on a local garage sale site, a certified technician said that he'd repair it for me, just for the cost of parts.  He finally was able to come look at it this past Monday.  It turns out that I need a new inducer motor, control board, and something with my vent for the poisonious gases.  He looked up the price of the parts in front of me, and they're around $900  ...and I do believe that was before taxes.  He said a brand new furnace would run about $2000.  

To say this made me physically sick, is an understatement.  I'm disabled due to chronic neuroimmune health conditions and I live off of $721 a month.  That barely runs my household and buys food.  It's impossible for me to come up with the money on my own.

I contacted our community agencies and there's only one program that could help me out, but I don't qualify because you have to have insurance on your home.  I bought this house at sheriff sale and due to the number of years it sat empty without insurance, plus it's age, the cheapest home insurance quote I could find, was $387 a month.  No way in the world I could afford that, so the house isn't insured.  

I'm using an electric space heater, which scares me to death that it will cause a fire, and an electric blanket.  The heater is keeping it about 56 degrees in here right now, and we have colder weather that moved in today.  Next Tuesday on my birthday, November 18th, the high is only going to be in the 20's.  I live in NW Ohio, and it get's cold here!  

If I can get the money to repair the furnace, I'll do that.  If donations exceed the repair and are enough to replace my old furnace, I'll replace it.  If there's anything beyond that, I'll fix the hole in the roof in my back room, that's letting cold air pour in through it.  

Please help me spread my campaign by sharing it across your social media networks. You can click HERE to view or donate to this campaign.  Thanks so much!

Tuesday, November 11, 2014

Go Haywire For Haywire Games

With all of the family get-togethers that are coming up for the holiday season, this post could be a life-saver for you!  Read through to the end, to get a special promo code!

WHAT?! You want me to spend time with my family?! That's stressful and painful and long hours of talking about Grandpa's latest ailment - how am I supposed to get through that?! 

Hey, it doesn't have to be that bad. Spending time with your family can be fun, especially if you have the right game to shake things up, get people laughing and enjoying themselves - and not talking about Grandpa's foot fungus! The Haywire Group has just the games for you, this award-winning game company has a great collection of fun family games CLICK HERE FOR HAYWIRE GAMES  including DICEcapades! 2nd Edition DICEcapades and Bodydoodles The Tatoo Guessing Game The Tattoo Guessing Game.

DICEcapades (DICEcapades) is a card game, a dice game, a trivia game, an action game and well, it's just a game with about anything and everything in it, which is why it's perfect for everyone. You may find yourself in a staring contest, answering obscure trivia or balancing dice on your hand while standing on one foot - you never know what your turn will bring (hint: you might want to start working on your hand charades skills!). This game will definitely have you looking forward to spending time with your family and if it doesn't, give your friends a call for a game night, you can all escape your families together. DICEcapades! (DICEcapades) isn't just the luck of the dice - it's also the smarts of the roller. 

Do your kids draw on themselves? Ask how old they need to be to get a tattoo? Are they just plain creative or want to be? If so, you need Bodydoodles The Tattoo Guessing Game (Bodydoodles Tattoo Guessing Game), this popular game for kids will channel that creative energy in a fun safe drawing game where your body is the canvas. It's as easy as drawing a body card and a doodle card, picking the player you want to tattoo and drawing. Using the skin safe markers, a player draws the doodle on the chosen player while all the other players try to guess what is being drawn. Points are earned by the drawer and the guesser. Perfect for get-togethers with friend, sleepovers, birthday parties and anytime a child says, "Mom, I don't have anything to do."
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