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

I'm Getting On My Soap Box

Earlier this evening, I posted a picture (which I'll include below) on The Fibro Frog's facebook page.  As you can see, it's a large brown box.  I was extremely excited when UPS pulled up today, and I watched the driver unload this big, huge, box.  It was a prize I'd won on the game site I play at.  Here's the picture:

The box contains a children's picnic table with umbrella.  My son has 3 children, and I'm giving it to them for their Easter present.  I could never afford to go out and buy this gift out of pocket, and it's something that I know the grandkids will really enjoy.  Therefore, I was super excited to win it by using my points in an auction on the game site.  See, one of the things this game site does, is to put nice brand new items up for auction.  You use your points to bid, and like any auction, the highest bidder wins.  I don't really care how many points I have to bid, because I earn the points free from playing the games.

Now, a bit ago someone commented on my photo and put "don't post this stuff on here".  Whhaatt?!  Really?!  First off, it's *my* facebook page.  Second of all, this game site is a big part of my life with fibro.

Let me explain a little as to *why* this site is a big part of my life.  My fibro is so bad, that some days I can hardly walk from my bed to my computer chair.  It's only about 25 feet between the two.  I don't get out of my house much.  I'd estimate that I'm housebound at least 95% of the time.  Hmm ...if you hurt or not, bordum naturally sets in.  This site, helps me pass the days upon days that I'm stuck sitting at home.  It was free to join and the games are free to play.

Free.  That's a key word here.  I can't afford anything I have to pay for.  Not only am I getting free entertainment, but I'm getting free prizes by either taking 1st place in game tournaments, or by winning auctions.  Prizes that I couldn't afford to go out and pay for.

I've always been open and honest on this blog.  I may not tell you guys absolutely everything, because some stuff is just down right embarrassing and humiliating, but I come pretty damn close to telling you everything.  I do that, because I want DHAC's (people who don't have a clue) that come across this blog, to see just how honestly fibro (and other chronic illnesses) can ruin a person's life.  The "rah-rah" blogs out there won't get it.  If people think that having fibro isn't so bad, then why should they be compelled to help advocate for further research?  For a treatment plan that will work for everyone this affects.  For a cure.  No, the truth of the situation needs to be know.  

When my heart was broke from my husband leaving me due to my chronic illnesses (or his excuse to leave anyway), I blogged about it.  When I've been in the spirals of depression from fibro, I've blogged about it.  I've blogged begging God for mercy from pain flares.  When I've found relevent info on fibro, I've blogged it.  One thing I have not blogged much about, is how insanely poor this illness has made me.

For months & months now, I've lived off $350 a month.  That's it.  No food stamps.  No going to a food bank for help.  Just $350, that's it.  I've lost a little over 50 pounds in the past year, and I'm still wearing the clothes I wore 50 pounds heavier.  So it's hard to even see all of my weight loss underneath the baggy clothing.  I take a few steps then hike my pants up.  I did break down and bought 3 new pair of underwear because I just couldn't deal with how big the leg holes were anymore.  I was dx'd awhile back with diabetes.  I can't afford to go buy the proper foods to eat, to try and keep it under control without meds.  I have to eat whatever I can buy cheaply.  Whether it's essentially junk or not!  Awhile back one of my local grocery stores had Eckrich Smoked Sausage on sale 10 packs for $10.  I bought ten.  That's 10 meals I can make for $10, compared to chicken breasts at $7/pound for 1 meal.  My only saving grace has been that I don't have a rent or house payment.  My house was bought about 4yrs ago at a sheriff sale and we paid cash for it.  I *am* behind in my property taxes though.

Why am I coming clean right now about the embarrassing fact of how poor I am?  No, not because I want you to feel sorry for me.  To show *why* little things like having free entertainment and winning free prizes mean so much to me, and excite me.  Also, to show how fibro can completely destroy a person's life.  Before I became sick with so many chronic illnesses, I at one point was a single mom to 4 kids.  They were ages 6yrs, 4yrs, 2yrs, and 3 months when I became single.  I had just enrolled in nursing school, before my husband walked out.  I stayed in nursing school, plus went out and got 3 part-time jobs so that I could support myself and my kids.  This is how my weekdays were:

6:30am get up and wake the kids.  Get them dressed and fed them breakfast.

7:15am Leave the house.  Drop the kids at daycare, then drive across town to the community college.

8am-4pm Take classes

4pm Drive across town to pick the kids up from daycare, then drive home.

5pm - 8pm Start supper.  Feed the kids.  Help oldest with homework.  Play with the kids.  Bathe the kids.  Put the kids to bed.

8pm-9:15 Cram in studying and homework for myself, and get ready to leave for work.

9:15pm - 2:45am was spent driving to work and working.

3:15am Get home from work and sleep until 6:30am.

Some nights I had to be at work at 8pm instead of 10pm.  Those nights really threw a wrench in the cycle.  On weekends, I worked longer hours because I didn't have school.  I was not a lazy person.  I'm still not in my mind, my damn body has just failed me.  I don't choose to not work.  I don't choose to be poor.  Fibro has just ruined my life as a *normal* person would view life.  I've said it before and I'll say it again.  Not only would I give anything to work for the money, but also for the social interaction.  I MISS having friends.  Having people to talk to IRL.  Having the opportunity to meet a guy and fall in love.  I miss EVERYTHING about a *normal* life!

I wrote an article for the latest issue of the quarterly emag Living Well With Fibromyalgia.  The article was about how to utilize the online support that's available to you.  In that article, I said that if you belong to any online support groups or facebook pages, to comment and post as much as you can.  Sharing things with others truly does help.  For those on The Fibro Frog facebook page, I encourage you to post any detail of your life.  In fact, I often make a status asking if anyone has any fun plans ...or if they have anything they're excited about.  I LOVE to hear exciting, positive things that you have going on in your life.  If someone's having a bad day, it can even help lift their spiritis to read this kind of thing.  Therefore, if *I* have something I'm excited about, I should be able to share it as well.  I was excited about this prize.

I shared the link for others to sign up, on the photo of the box when I shared it on the facebook page.  I did so, because yes, I *do* receive points for refering a friend, but the main reason is because it may end up being a refuge for someone else too.  If I'm having a bad pain day ...or I'm having a bad fog day ...I can sit and play these mindless games to take my mind off it.  A few days ago, I used the games to help take my mind off the debilitating charley horse type muscle spasms I was having every 10-20 minutes in my mid-back.  I had them from the time I got up at 8:30 until I woke up the next morning.  That is one type of pain I just mentally can't take.  On top of the spasms, the sides and front of my upper legs felt like they'd been beat with a baseball bat, and around the inside part of my knees, felt like someone had a match sticking into them.  I can't tell you when I've been that close to mentally breaking from the pain.  I was ready to start screaming and crying and I truly understood why some people sadly end it all with suicide, that have chronic pain.  Believe me ...anything to try and take my mind off the pain for a few minutes at a time, was welcomed.

I know I can't be the only one in the world, who has had their finances affected by their illness.  So maybe winning some nice free prizes would benefit someone else in the way it has for me.  That's another reason I have posted the link, and why I will continue to post the link.  Everything doesn't have to have malicious intent to it, as this commenter made me feel this evening.

I've posted before, how I started this blog, for ME.  I didn't know if a single person would ever see it or read it but it didn't matter to me.  I did it to have my own place where I could write out my feelings about living with chronic illnesses, and how they effect me day to day.  How I survive and cope living with them.  I've posted that I feel blessed that people have found it, and that the facebook page has grown into what it is today.  When I get a message from someone, or someone comments on a status and thanks me for the blog and/or page, and says how it helps them survive every single day, it's a mind-blowing surreal feeling for me.  It makes me feel so very blessed.  Ultimately though, it *is* my blog and facebook page, and I WILL post ANYTHING that I feel may help someone else.  Yes, a silly irrelevent game page helps me.  A children's picnic table excites me.  I will share my dark dismal feelings, and I will share my excitement and blessings.  That's just how I am, and what this blog/facebook page is for.  I would honestly rejoice in anything that helped any of you, or made you feel happy and excited so I hope you guys can rejoice with me when I have these feelings too!  

I'm off my soap box now, but I'm going to close this post out by sharing what wonderful items I've been BLESSED with through the game site, for 1st place tournament and auction wins for the month of Feb and so far this month.  Maybe then you'll understand why I love this site so much, where I can't go buy gifts for people, or things for myself, on my own right now.  Then, I WILL be sharing the link incase this site will help anyone else the way it has me.

In February I won a Keurig and a Garmin GPS Sports Watch (a birthday present for my oldest son, who wouldn't have gotten a present from me this year if not for me winning this).

So far this month (March) I've won:

Sit and Play Picnic Table w/Umbrella

3,000 points in a points tourny

$10 JC Penney Gift Card

$10 Jo-Ann Crafts Gift Card

Essential Home (from K-Mart) 6pc Kitchen Tool Set

$10 Walmart Gift Card

$25 Home Depot Gift Card

$20 Macy's Gift Card

I'm holding 1st place in several other tournaments right now, for more prizes.  If you'd like to sign up, just click HERE. 

Seminar Excitement!

Things are moving right along for my first chronic pain seminar.  A caring friend made this flyer for me last night.  I love it!  What do you all think of it?  The pastor of the church I'm going to hold it at, is emailing the flyer throughout all of the other churches in that denomination, and an elder is taking flyers to the hospital that she's a nursing supervisor at.  My daughter, Courtney, also posted the flyers in some online garage sale sites that are local to us.  Sunday, I'll be having all of the material for the seminar, including the flyers, printed up at Staples and will begin to start putting the packets together that I'll be giving out at the seminar.  

This has been a dream of mine, since I was first diagnosed with fibromyalgia.  Although fibromyalgia is what I was diagnosed with, this seminar will help anyone who suffers from any type of chronic pain condition and/or invisible illness.  To see my dream finally coming true, is surreal to me.  Now, as long as I have people show up, I'll be feeling pretty happy!  Having people show up is probably the biggest hurdle I'm up against lol.  I'd love to be able to advertise in the newspapers around here too, but I just don't have the money for that.  My husband still is acting like he doesn't have a family.  Since he moved 3 hours away to live with some woman he met on the internet he hasn't spoke to us nor gave us any money for child support or alimony.  My hearing to get child support started isn't until the end of August.  

To know that I'm working to make my dreams come true, and actually accomplishing those dreams, fills me with a great deal of pride and personal satisfaction.  I may be sick, but I can still fight and have a voice that's heard.  I'll never give up trying to advocate for those of us with conditions such as I have.  This will be a life-long journey for me.

If everyone could leave me a comment, telling me what you would like to see discussed at a seminar such as I'll be putting on, it would mean a great deal to me.  I know what I have planned to cover, but maybe I've missed something that would be beneficial to my audience.  I'd be humbled for you all to work with me, so that I can present the best possible seminar that I can!

The Dreaded Fibromyalgia Diagnosis

Last October, I finally had my long awaited appointment with the Rheumatologist.  I had waited months to get into this guy.  He came in, spent about 10-15 minutes with me, then asked me to meet him in his office.  When my husband and myself sat down with him, he said that he believed I had Fibromyalgia.  I didn't like hearing that.  After all, isn't that just a diagnosis that a doctor gives someone when they can't figure out what's wrong with them?  MY bloodwork revealed a weakly positive ANA, a high SED rate, a high CRP.  That wouldn't indicate just Fibromyalgia, would it?

On the drive home, I read through the pamphlet he'd given me on Fibro, from the National Arthritis Foundation.  Yeah, I screamed out in pain when he'd applied pressure to the tender points.  Yeah, I do have insomnia.  I do have that thing they call "fibro fog", and I'm stiff and sore when I wake up.  I have headaches almost daily, and symptoms of IBS....but I still wasn't comfortable with a diagnosis of Fibromyalgia.  More so then not being comfortable with the diagnosis, I wasn't comfortable with the doctor.  I felt that he rushed, he cut me off when I'd try to speak, and that he in general was just a complete pompous ass.  He made me feel stupid.

They'd given me another appointment to see him again the end of December.  Even though I didn't personally care for this doctor, I decided that maybe he just had been having a bad day the 1st time I'd seen him.  -Or maybe I was the one that had a bad day.  I kept my appointment, but again I was made to feel stupid and like I was wasting his valuable time at roughly $200 for a 10 minute visit.  I wasn't told anything new.  He didn't do anything new.  Yet I was instructed to come back again the end of February. 

An internet friend had been going through roughly the same thing I was, but she was being seen at the Cleveland Clinic Foundation in Cleveland, OH.  She raved about how highly she thought of the CC and the doctor who she see's.  I did some research and was very impressed.  I called to see if they'd take me for a 2nd opinion appointment.  They were happy to do so.  Although I wasn't seeing the same Rheumatologist that my friend goes to, the doctor I was to see was also highly trained with great credentials.  All of the Rheumatologists there are wonderful, experienced and knowledgable.

I went to my 2nd opinion appointment and can't say enough about how impressed I was.  I live roughly 2 hours from there, but Dr. Gota and the CC is well worth the drive.  I actually was at my appointment longer than it took me to drive there.  After roughly 4 hours there, 13 tubes of blood, x-rays, and u/s I walked out still having that dag gone diagnosis of Fibromyalgia...but with a clearer understanding of Fibro and that it really can hurt that bad and still be just fibro.  I also walked out with the additional diagnoses of AC Joint Arthritis in both shoulders, Osteo Arthritis in both knees, PCOS (which isn't even her speciality...it's a GYN issue, but she cared enough to do the tests), and IBS.  I had been diagnosed with the bone spurs on my hip from the 1st Rheumatologist and his x-ray, and the diagnoses of spine bone spurs and Tarlov cysts from an MRI that a pain management doctor had ordered about a year ago.  That same MRI had also revealed arthritis in my neck and spine too, but neither of the Rheumatologists have mentioned that to me so I don't know exactly where that stands LOL. 

Some days I can barely move, from the pain I have.  I will never again underestimate the pain that Fibromyalgia can cause.  I will never again say just Fibromyalgia.  I will never again think that this syndrome is just something made up.  Unfortunately, I now know how evil Fibro can be. 

I named this blog The Fibro Frog for 2 reasons...one was a play on words for the horrible Fibro Fog I suffer from almost daily.  The second reason is because I've always loved the acronym frog...fully rely on God.  I've been doing a lot of that lately.  Daily, as a matter of fact.  I've also decided to stay on with Dr. Gota at the Cleveland Clinic.  I mean, the CC is rated as the 4th best hospital in the U.S. so if I'm within a 2hr drive of there, I'm treated like a human being there, my pain and symptoms are real to them, why in the world should I drive 45 minutes to a guy I can't stand?

I hope I get a lot of followers on this blog that will comment and contribute.  Maybe we can build a network of support for each other, and share secrets of what works for us.  Granted, no two people with fibro or even arthritis will suffer the same symptoms all the time.  Not everything that works for one person will necessarily work for another, but maybe (hopefully) we can all work together to help one another.  At the very least, we can spread the word about how real Fibromyalgia is, and bring awareness to this evil thing.