What Is A Fibromite?

Key Chain Fundraising Event

Hi everyone!  I've designed a key chain using my own photo and words, to use as a fundraiser.  The key chain will have the above photo on it.  I'm trying to raise the money needed for me to present and advertise my living with chronic pain seminar.  I'm extremely grateful for each and every order, and would really appreciate it if you all would also share this event through your social media sites to help me spread the word!  I have a great group of supporters here on The Fibro Frog, and I appreciate each of you!  Thanks for your help with this event!  You will find the event by clicking: HERE.  Thanks again!  =)

The Never Ending Day

I always hear people complain about Monday being a bad day.  I guess that I'm just not "normal" in any regard, because my Monday went perfectly well (aside from being in a ton of pain from pushing myself last Thur-Sun).  Instead today, Thursday, was like a Monday for me.  As usual, my insomnia has been horrible.  I didn't fall asleep until sometime after 3am last night this morning.  My daughter home schools online through our school district and on Tues and Thurs she goes into the building and does her online lessons in the library that way if she needs any help from a teacher, she has quick easy access to one.  She's a senior this year. She woke me up at 7:10am this morning by coming into my room saying "Mom!  Wake up!  Sasha was starting to throw up so I hurried and got her outside and hooked her to the chain but she just laid down on her side and white foamy vomit is coming out of her mouth!  Is she dying?".  I dutifully get out of bed exclaiming that I don't know if she's dying or not.  Walk outside to see her standing there perfectly fine, wagging her tail at me.  -Oh Sasha is my baby, I mean, my puppy that my parents got me after my husband walked out on us.  I laughed at them and asked "Consolation prize?" lol.  Anyway, I brought her back in and flopped myself down into my computer chair.  I was so tired that my vision was blurry and my head was killing me.  Daughter exclaims that she has to leave for the bus stop (2 houses down from us).  

Five minutes after she left, I hear her coming back onto the front porch.  She came inside and said that our neighbor lady is sitting on the porch and told her that she'd missed the bus.  I wanted to choke call the bus garage to ask them why in the world the bus came 20 minutes earlier then they'd told us it would be here.  I just honestly didn't have the strength to deal with calling anyone and complaining though.

My daughter got a ride to school, and by this time I know there's no way in heck that I'm going to get back to sleep.  My insomnia is honestly horrible!  No matter how tired I am, I just toss and turn and my body starts hurting until I just give up and crawl out of bed.  There wasn't any use in trying, so instead I drag myself walk to the kitchen needing to make coffee.  Now, my Keurig Platinum Edition had broke on me like 3 weeks after my husband walked out of our lives.  Oh how I coveted liked that Keurig.  After "hubby" leaving me out of the blue and not paying me any support, a new coffee maker just wasn't in the budget.  A lovely, caring friend bought me a Mr. Coffee machine.  I threw a coffee filter in, filled it with coffee, quickly measured the water and poured it in, and hit that power button.  I grabbed a coffee cup, threw in some sugar, a little milk, then I stood there looking at the machine begging and pleading for it to hurry up and make enough coffee to use the "sneak a cup" feature and get my first cup of java.  Thankfully after what seemed like a thousand years I was able to pour a cup.  

I made my way back into the dining room and flopped down in my computer chair again.  -More like slowly sat down saying some curse words "ow oww oww's" under my breath.  I stepped in a broken outlet box of some kind in the lobby floor at Fort Rapids on Sunday.  It twisted my knee and it's just completely done right now.  Standing up, sitting down, walking down steps (one stair at a time like a 2 year old would) is causing me immense pain.  I get sat down, savor the aroma of the coffee as I'm bringing the cup to my ever waiting lips, and sigh as I'm taking a sip of the wonderful smelling, very needed, anxiously awaited coffee.  I swallow then think "what the?!"!  I take my finger and wipe my tongue.  Guess what I wiped off of it?  Yep, coffee grounds.  Really??  That's the thing I dislike the most about standard coffee makers.  If you don't get the filter in there just perfectly, you end up drinking coffee grounds.  Such a mean, cruel joke to my blurry eyed, head throbbing, self.  

After fixing the coffee situation, I sit down again in my computer chair.  This time I'm praying determined that I won't let all of this ruin my day.  I even posted about my morning on my personal facebook status and remained doubtful hopeful that the day would have to get better, it certainly couldn't get worse.  Besides, if I posted it on facebook then it had to be true that it'd get better, because it was "facebook official".  Did you know that if something is posted on facebook, then it has to be right?  My daughter and her friends had taught me that.  I thought I was being a totally hip and cool mom good mom by remembering this and posting it to help my day.

Well, let me tell ya ....apparently that bs saying about something having to be true because it's "facebook official" was nothing but a big lie.  Imagine me forcing a smile smiling, determined that my entire day wasn't going to be ruined by lack of sleep and problems from the morning, walking into my bedroom.  I stop, flip on my light and Holy Mother I gasped right out loud.  My bed, my floor, my ROOM was covered in this whitish/green fluffy material.  I unbelievably frantically start scanning my room.  As my eyes (that made my head hurt worse to move them) reached the top left corner of my bed, I almost started screaming crying.  The corner of my sheet had come off my bed. My four month old memory foam bed.  That I wanted for the last year.  That is the ONLY thing that keeps me from waking up with unrelentless pain.  That I'm still paying on when I don't even have ANY income.  Has a big sized HOLE in it!  I'm standing there horrified and look down to see that stupid "poor, sick puppy" that started this whole mess of a day, proudly looking up at me and wagging her tail.   I tried to regain my composure, as rage filled me.  I seriously didn't know whether to cry, choke scold the dog, or just throw myself down while kicking my feet, pounding my fists, and screaming at the top of my lungs!

After calming myself down a bit, I reasoned that it was partly my fault too, because my bed has a mattress cover that zips around the entire thing and I didn't have it on there.  I had washed it a few days ago and it seriously takes three of us to take it off or put it on.  Therefore, I had it laying on top of my dresser.  I decided on the spot that neither of my dogs are EVER allowed in my room again!  I don't have a real door on my bedroom though.  I have one of those cheap accordian doors on it that you can buy at Home Depot or Lowe's.  The dogs just bash it with their heads, and into the room they go.  I had a cut piece of plywood that comes up to about my knee level (too high for them to jump over it) so I've now blocked off my doorway with that, until I can find the money to buy real door to keep shut!

As I sat here watching the clock waiting on my daughter to get home from school, I decided that there was no way in the world that I was even going to attempt to make a dinner tonight.  She walked in from school and I looked at her with a wild look about me smile and calmly stated that we were going to Burger King for supper tonight and not to argue about it or say a word.  Just to smile, nod, eat, enjoy, laugh, and have a good time with it.  

So, I've decided that tomorrow will be a better day and this time I'm not making it "facebook official".  I'm making it "The Fibro Frog official" instead!  =)  Right now, it's 12:07am and here I still sit.  Still feeling like a slug.  Still in pain.  Still tired.  Still dealing with insomnia.  Tomorrow today though, I'm NOT getting out of bed at 7:10am for ANYTHING!  I shall sleep what I can, and the world will wait for me.  If not?  That's ok too!

Oh!  -That photo above?  Yeah, that is not my mattress, nor my house, nor my photo.  You want to know why?  Because I didn't have enough wits about me when it happened to take a photo of my own mattress.  Had I done that though, I have to say that my photo would be the ONLY photo of a monster  dog chewed memory foam mattress on ALL of Google Images (where I obtained the photo above).  You know what that would mean?  I could've been famous!  I could've had one of those silly photo's with a caption on it that says something dumb silly to make every person and their brother on facebook laugh, "share" and "like" it.  -And that my friends, would have really made it "facebook official".  Yep, honestly, not one other person has ever uploaded a picture of a hole chewed into a memory foam mattress, by a small, 5 pound 1/2 Jack Russell Terrier and 1/2 Pomeranian mixed puppy.  It would've OFFICIALLY been a first.  I missed my calling for fame in my despair.  ;)

Quality VS Quantity Of Life

Last night, I went with my kids and their friends to the little village that's 5 miles away from us.  They have a little one day festival type thing, then end the night with fireworks.  Since I wasn't able to watch fireworks on the 4th of July, I was excited to go.

Every year I take photos of the fireworks but this year, I decided to try and video them too.  My camera is a Canon T3i and it's supposed to have professional quality HD video built in.  I'd never tried using it before though, so I was fumbling around in the dark trying to figure it out lol.  I couldn't believe though, how much it hurt me to video it.  I had to tape a little, then shut the video off, then tape a little.  A minute or so into the third taping, I had to ask my daughter to take it.  I was left with horrible neck, shoulder and arm pain, and it put a charley horse in the middle of my back.  Even with the first taping I did, I missed having it centered and getting it all in, due to the pain it was causing me to hold the camera up aimed at the sky.

I was going to upload the first clip, to show how shaky I was trying to video right from the beginning, but for some reason I couldn't get it to upload to blogger.  It keeps telling me there was a problem uploading the video, but it doesn't tell me what the problem is lol. I will insert some photos of fireworks instead I guess.  I had taken some before I got the idea to try and use my video for the first time.

We all know that doing simple household tasks can be hard or even not doable at all sometimes, but it's the simple, little things, like trying to shoot a video with a camera that always throws me for a loop.  Things that people take for granted and don't even think about.  I never would've guessed how much it would hurt me to take a video.  My neck and arms still hurt this afternoon from it.  

This is no way to have to live.  Fibromyalgia (or insert Lupus, Arthritis, CFS/ME, etc) may not be fatal, but it sure stills your quality of life.  I've always believed that quality is better then quantity, and that holds true in my health and my life.  Not being able to bend over and pick something up from the floor, or run a sweeper. Being in tears after fixing a meal...sometimes in tears after just frying an egg, having to take breaks to unload and reload a dishwasher....  I could go on and on.  That's not quality, that's quantity.  I have a friend that wants my daughter, her boyfriend, and I to go to the zoo with him.  He told me to pick a day that I wouldn't be in a lot of pain.  I rolled my eyes and told my daughter and her boyfriend that this friend of mine needs to be the first one signing up for my seminar to learn the truth about living with chronic pain.  Oh how I wish I could know what day would be better then another for pain.  Unfortunately, it just doesn't work that way.  

I'm asking again, for you all to please share this blog with your friends and family.  If you're a blogger yourself, please share this blog with your readers.  It's so very important to me, to educate people about life with an invisible illness that causes chronic pain.  Unless you live with it yourself, it's really hard to grasp what life is like, living this way.  Someone once said to me "At least you don't have cancer.  That could kill you and with this you won't die.".  I paused, then responded with "You're right.  It won't kill me.  Have you thought about the fact though, that people with cancer have hope?  There are solid treatment plans mapped out for all types of cancer.  A person with cancer, has hope of one day being cured.  They have hope of their pain and sickness ending.  Even if they do die, at least they aren't living for years and years in sickness and in pain.  One way or another, their pain ends.  I don't have that hope.  I know that I will have to live every day of my life hurting and sick.  If the quality of my life is going to be so limited and so painful, then do I really want to live until I'm 70? 80? 90 years old?".  I also went on to say that I know what a horrible beast cancer is, and my heart breaks for those that have to go through cancer.  Please don't think I'm an insensitive jerk because I'm not.  In fact, had I finished nursing school, I wanted to work in pediatric oncology.  This is just a way to get people to stop and think about what invisible illness and chronic pain sufferers go through.   I'm really hoping for a packed house for my seminar, because people really need to understand and learn.  They really need to stop and think.  Again, please share this site or my facebook page, and the flyer for my seminar.  I thank you all in advance!

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!

Keeping My Chin Up

My appointment with my rheumatologist was this past Thursday.  I also had to have a consult with gyn while I was there, and I had some tests ordered to do that day as well.  I knew it was going to be a long day, and it really was.  I left my house around 6:30am and I didn't get home until going on 9pm.  I was completely exhausted.

Due to some of the symptoms I've been having, and the results of one of my tests, I have to go back and have an endometrial biopsy done.  I've been told that the experience isn't pleasant, at it's best.  The doctor even warned me to take pain meds about an hour before the procedure.  I'm not looking forward to it, what-so-ever.  If it needs to be though, then it needs to be done.

My appointment with rheumatology went ok.  She marked down that my condition is "deteriorating".  My pain and insomnia flares kind of told me that though.  I didn't get my huge "miracle pill" that I was hoping for. I didn't get a med change at all, except to double my dose of amitriptyline and she added a very low dose of prozac for me to take in the mornings.  She started me at 10mg, but said if I tolerate it then in 2-4 weeks to go to 20mg each morning.  She said she didn't want my body to have to adjust to too many things at once, where she'd doubled the amitriptyline.

Besides marking on a form that my health status is deteriorating, she also wrote on the form "Fibromyalgia - widespread pain, fatigue, depression, pain all over, inability to concentrate, difficulty with memory" then "depression, anxiety, a lot of stress".  Even though I knew all of this before walking into that appointment, even that my health status was worse, it still felt kind of bad to see it in writing.  I want a job so bad; I need a job so bad, and this just reinforced to me that I'm not going to be able to ever hold a regular job.  

Right before I left, Dr. Gota told me that she's helping out with a research study and asked me if I was willing to participate.  The study is being privately funded, and it's looking for a certain protein that can be found in the white blood cells of patients with fibromyalgia and chronic fatigue.  The study may provide important information on opportunities for the development of therapeutic strategies against this disease.  They'll be looking at approx. 20 patients to take place in the study.  All I needed to do was allow them to take one tube of blood from me.  Of course, I happily signed the consent form and had the blood drawn.  I told them anything I could possibly do that might help aid in either a cure or a concrete treatment plan, I was willing to do.  I constantly preach on here about advocacy and more research needing to be done.  What kind of hypocrite would I have been to say no to them? LOL  I'll admit, it excited me and gave me a ray of hope, knowing that a new study is being conducted!  We need MORE studies and clinical trials in this field.

I'm sad knowing that my health is deteriorating.  I'm discouraged about money and how to pay my bills.  I'm worried about the endometrial biopsy and what it might show.  Through all of this, I've decided to keep my chin up and do my best to have a positive attitude.  IF my biopsy comes back bad, at least they'll have caught it.  The Cleveland Clinic is also the number 1 rated place for cancer treatment in Ohio.  Those are both positives.  I may be short around $160 (more if I have to buy any more groceries between not & then) for next months bills, but at least I have enough money to cover THIS month's bills and the hope of making enough money to cover July's bills too.  -I have my older camera, a Canon EOS Digital Rebel 300D for sale on craigslist right now.  My body may not allow me to get a "traditional" job, but I can keep the faith about getting a seminar on chronic pain and/or invisible illness going.  I may have a break, a church may donate space to me for me to hold a seminar there.  I'll find out in a week or two for sure.  Then, I'll just have to come up with a cheap way to advertise the seminar.  My health sucks, to just put it out there, but no matter how bad my health is, someone else out there has it worse.  

Education, advocacy, and awareness.  I'll never stop preaching about those three words.  Those three little words are not only my ticket to a career, but also to finding a cure for this nasty illness.  The ticket to developing a concrete treatment plan that will work.  Then, none of us will have to feel this way anymore.  A positive attitude may be the difference between succeeding or failing.  I choose to succeed.  If you know of a company, business, or organization that may be interested in helping me to succeed then please pass along this blog or the link to my "Go Fund Me" page.  If I could raise enough donations to rent space and to advertise, for 2-3 seminars, then I think I'd be set.  I'm keeping my chin up.  When the time is right in God's plan, this will all come together for me.  Of that, I'm confidant.