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.

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

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.

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!

Am I As Invisible As I Feel?

I know that many who will read this post, know me well.  Those of you who are new to this blog, may start reading this, and ask yourself "What is this lady doing? If she's an advocate for chronic pain and research, then why isn't she being all super happy and over the wall professional?".  I'll answer that for you right now, so you don't have to pause and ask yourself this question a paragraph or two into things.  Yes, I'm a chronic pain advocate. Yes, I will do anything and everything within my power to advocate for further research to find a cure for chronic pain conditions such as Fibromyalgia, Lupus, RA, CFS/ME, CRPS, Osteoarthritis, ...and the list could go on forever and ever unfortunately.  What I am not, is a doctor.  Or a scientist.  Or any type of medical professional.  I've never had a college writing class other then English composition I & II.  I've never had a public speaking course.  In fact, I don't have any fancy initials of any type behind my name at all, except for those I've jokingly donned as CPS (Chronic Pain Sufferer).  

In this blog, I "talk" about real problems.  Real feelings, that sufferers of chronic pain conditions feel.  If everyone out there that suffers from Fibro, or Lupus, or what-have-you, is all happy and positive in all of their posts, then they aren't being honest.  If they aren't going to be real about the facts, feelings, and challenges we face, then why write or try to advocate at all?  Because in my own personal experience, as a person, not as an advocate, people are not going to be able to really grasp the true concept of this illness if you don't tell them what the true concept of this illness is.  If they don't suffer it, they don't know it.  It's that simple.  If someone reading this can't connect with me, and really understand what I'm going through, then how can I expect them to help?  If this illness (any of these illnesses) aren't bad enough that you're still all happy and strong every day, then why should they bother wanting to contribute funds to further research?  After all, our life must not be so bad if we can remain so strong.  That said, you won't get any "sugar coating" of my life or of this illness on this blog.  What I put, is how I feel.  What this illness has done to me.  How it's made me feel.  

So how am I feeling?  I'm feeling really sad.  Not just Fibro, but almost all chronic pain conditions run the co-morbidity of depression.  If you hurt every single day of your life, and you've had to give up things and people you love because of your health, you'd probably be depressed too.  No joke.  I'm not embarrassed, nor am I ashamed, to admit that I suffer, horribly, with depression. I can't begin to tell you the amount of tears I've shed off and on all night tonight.  Right this very minute even.  I've gotten so good at crying, that I do so silently now.  The tears slide down my face, and no one would be any wiser if they weren't looking at me.  Sometimes, like tonight, I often wonder if I'm invisible.  If my tears are invisible.  

I feel as if I'm stuck all alone, confined to my dining room because God knows the pain I'd be in if I tried to sit comfortably in my living room.  This computer, it's my gateway to the outside world.  The real world, where people go places, and do things, and have friends, and date, and enjoy life.  Where I can look, and read, and see that people still go places.  They still have friends.  They still have fun.  If I didn't pop online and make a status on facebook, or post on this blog, then I'm not sure that anyone would even know that I exist anymore.  This illness, it's taken so much from me.  I sure didn't let it.  I didn't want to give up a happy, fun, carefree life.  I didn't voluntarily hand it over.  Heck, two years ago I would've laughed if someone had told me this would be my life now.  This.  I don't even know what else to call it.  

This crap with my body, ...the fibro, ...the still unnamed autoimmune disease that's putting calcium deposits in my lungs, and on my bones.  It's created the most lonely, miserable, low self-esteem life that I could ever dream of.  I'd love to blame it for stealing my marriage.  I have blamed it for stealing my marriage before.  Right here on this blog even.  I don't think so any more though.  He'd left me before, when I wasn't this sick. If he truly had loved me, this wouldn't matter.  No, in the past year he's been gone, I've come to realize that this was just his excuse.  His idea to blame, so that he didn't have to shoulder the burden of guilt himself.  His excuse that my health was just too "stressful" for him was just an easy out.

One time when he left me, we divorced.  We were divorced for a year, then decided to give it another try and remarried.  In retrospect?  A horrible idea.  Still though, things were hard for me.  I had four children.  I went to community college for nursing during the early morning hours.  I went from there, to a 2nd shift factory job Monday-Friday.  On Friday night when I'd get off at the factory I'd go straight to work as a waitress and bartender until close.  I'd go to work at the same bar much earlier on Saturdays and worked until close.  On Sundays, I worked at a different bar that served a lot of food and worked a 12pm-5pm shift.  It was hard.  But I could do it.  I did do it.  I had plenty of money to support myself and my kids.  I was out among the living.  I had friends.  Friends from college.  Friends from work.  Friends from high school.  The kids and I went places and did things.  I was asked out on dates. I was pretty. I had a great attitude and was fun to be with. If I was alone, it was by choice.  

Oh how the years change and complicate things.  This time when he left, I hadn't worked in years.  It hurt my body too bad.  I didn't know what was wrong with me, but it hurt to work and my husband told me "Well, don't work then.  I make enough for us to get by".  I didn't work.  I sat home, taking care of the house and the kids.  I engrossed myself into their school activities, and their friends.  I had supper ready for my husband damn near every night by the time he walked in the door from work.  I filled my life and my heart with being a wife and a mother.  By the time he left this time, there's no way I could work.  No way.  It puts me literally in tears to stand long enough to fry an egg.  I don't have any "outside" friends, because my husband and my kids were my life.  I concentrated for years on nothing except for them.  I truly believed my husband was my best friend.  I'm not pretty any more.  My dad's side of the family is blessed with the fat gene curse.  Before I was sick, I kept my weight off.  I had to work my ass off to stay nice and curvy with a flat tummy and legs of steel, but I did it.  Now, I can't exercise like that. Some days I honestly have to have my youngest child, the only one who still lives at home, come into my room and help pull me to a sitting position in the morning because my lower back hurts too badly that I can't sit up on my own. When you're in that kind of pain, exercise is not an option. I'm fat.  I'm more then fat, I'm obese.  If anyone tries to say that doesn't carry a stigma with society, they're out and out lying!  

How am I ever supposed to meet new people?  How can I make friends?  I can't go get a job, and meet people in the work place.  Heck, I wouldn't even begin to even know a shift I could work because sometimes with my insomnia I'm not able to go to sleep until 8am.  Sometimes it's noon the next day.  Other times, last night for example, I actually was able to fall asleep around 12:30am, but then I was awake again by 5:30am.  By 1pm today I couldn't stand it and fell asleep for 2.5 hours.  What job would be able to accommodate me?  Even though I believe in God, and I pray, I can't even commit to going to church because I never know if I'd be awake or not. Even for evening sessions.  Or if the pain will be too bad to go. How am I supposed to meet people to make new friends?  As for dating?  Huh.  Yeah.  I couldn't buy a date to McDonald's.  They'd take my money and throw me out of the car before we got there.  Seriously though, what man, what good man would want a 42 year old woman who's fat, sick, and can't work to support herself?  Not much of a catch.  This illness, ...or these illnesses, have stripped from me every single shred of self confidence and self worth I've ever had.  

Still, I don't lose hope.  This hope, drives the fire in me.  It pushes me to tell my story.  It forces me to swallow my pride and not care what some may think of me for admitting my weaknesses and feelings. For admitting my physical and emotional pain.  This hope is what's motivating me to organize a walk/run in September to bring about awareness of chronic pain conditions and to raise funds for further research.  I have the hope of a cure to be found in my lifetime. I have the hope of a treatment plan that will actually work, to be found yet in my lifetime.  I don't have a clue how to organize this thing, but you can bet your ass that come September this thing will be happening, because I will never give up.  Never.  If I give up, then I'm letting go of hope.  I can't just sit back and depend on others to create enough awareness and research for a cure to be found.  I have to do my part in this.  A cure may not be found in my lifetime, but it sure as hell won't be from my lack of trying to do all I can.  

See, no matter how sick, or how sad or broken I may seem at times, I still have hopes and dreams.  I'm fighting tooth and nail right now, to try and ensure that my hopes and dreams come true someday.  I hope to live without debilitating pain every single day of my life.  I hope to be able to work again someday.  I hope to be able to exercise and get down to a healthy weight.  I hope that someday I can show the world that I'm still that same fun, funny, fly by the seat of her pants girl that wants to go on vacations.  Go out to eat and to movies and dancing on dates.  That I still have a huge heart where I like to put those in my life ahead of myself.  That my true joy stems from making others happy.  I have hope ...for a full, fun, life with a loving relationship in it at some point.  That is why I sit here behind my computer, and I post about how important it is to educate others, anyone who will listen, as to what it's really like living with a chronic pain condition.  That is why I open myself up on this blog.  It's my hope for a cure. For now, I'll sit here invisible to the world, hiding behind a computer screen.  I'll cry my silent tears, and I'll hope and dream for the day that I can run outside and jump up and down!  For the day I can take my life back from Fibro and autoimmune illness. The day that living a life with chronic pain is behind me and I can look to the future.