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Wednesday, May 30, 2012

Education, Motivation, and Advocacy Seminars




It's become more then obvious, that if I want to conduct seminars on living with chronic pain/invisible illnesses, that I'm going to have to take the initiative to get things rolling for me.  Paid public speaking is a hard thing to break into until you have really made a name for yourself.  Opportunities are not going to just fall into my lap.  If I want this, then I need to make it happen.

As much as I didn't want to, I've opened a Go Fund Me account.  I'll be seeking donations, with the overall goal of collecting $5,000.  I need this money, to have the funds to rent a couple hotel conference rooms and pay for advertising, to get my first few seminars under way.  I'm also going to have to purchase a video camera so that my first few seminars can be recorded, then I can upload clips of it to YouTube, so that potential clients will see what I have to offer.  I've been approached by two different people so far, asking if I have any clips uploaded to  YouTube.  No clips, meant no work for me.

I'm confident that if I can book a few seminars on my own, that word will spread about me and I'll be able to make a career out of paid public speaking.  I want to educate, advocate, and motivate.  Not only individuals who suffer from chronic pain and/or invisible illnesses, but also doctors, nurses, politicians, pharmaceutical companies, the general population.  Nothing will ever change in the world concerning chronic pain conditions, unless people know about them, and understand them.  My hope is that someday soon, enough people will be aware of the facts of these conditions, that more research will be conducted and a cure, or at the very least, a concrete treatment plan will be found.  Right now there's too many myths about these conditions circulating that need to be dispelled.  

If you know of any company, corporation, or organization that would believe in me and what I'm trying to do, please point them to me and/or my donation page.  I absolutely hate asking for help, but I'm left with no choice but to swallow my pride and ask for donations.  This is too important to me to not make it happen just because I don't have the money to do so on my own.  You can find my donation page HERE.  Please help me spread the word.  Help me to get my voice heard.  Thank you all in advance!

Monday, May 28, 2012

Memorial Day 2012


Today was a tough day for me to get through.  See, my STBX husbands birthday is May 27th.  We always have our pool up, and grill out.  Sometimes we'd go camping for the weekend, or rent a cabin in southern Ohio.  I can't tell you how many times I thought of him yesterday.  Our daughter tried to get a hold of him so she could tell him happy birthday, but he didn't return her call.  That hurt her, which hurt me in return, as her mother.  

Despite him not being here this year, I was bound and determined to try and make this a great day for my daughter anyway.  Well, you all know what they say about the best laid plans, right?!  My son put the pool up for us about a week ago.  I figured that would give us plenty of time to have it ready to swim in by today. Well, we had one problem after another with the pool, filling it, etc.  I had one pouch of chemicals left from last year and figured that would be enough to get it going for us.  Wrong.  Today, the pool looked like a greenish-black sesspool.  Of course since I haven't worked in years I don't have a job to make money to buy  more chemicals, and the STBX isn't paying me support that he promised he'd pay when he walked out.  

Next, my daughter wanted chicken on the grill with BBQ sauce.  Go ahead and laugh, but I've never cooked on a gas grill before.  My STBX always did it.  Courtney (my daughter) wanted it so bad, and has been so hurt and disappointed over various things since her dad walked out, that I felt I had to try.  It took us until around 8:30pm to get the grill out and start making supper.  The electric start on the grill is broken, which I knew, so we have to light it with a match or lighter.  We'd had those long lighters that's used for that, and that's what STBX always used.  Of course we couldn't find it though.  We rolled up a piece of computer paper and used that to light it with.  Low and behold, after we were done, we found the long lighter.  She's trying to be nice and saying that the chicken was really good, but in all honesty it was pretty much a charred disaster.  

My youngest son is the only one of my children that's married.  Him and his wife are in the process of moving out of my house.  They stopped over to pick up a load of their things.  He casually mentioned to me that he'd seen his aunt yesterday, the one who STBX moved in with when he left me.  He said that he'd asked his aunt what his dad had been up to (he'd stopped to try and see him on his birthday) and she told him "Nothing much.  He's just been hanging out with his new girlfriend".  Of course hearing that today, even though I already "knew" he was seeing someone, really hurt.  By the time my son had left, I was sitting hunched over my desk due to my back pain.  I started having chest pain again (I think it's from anxiety), and felt completely wiped out.  I couldn't help it, but the tears started flowing again.  

My kids haven't heard from, nor seen their dad in almost 3 weeks now.  This is really hurting my daughter.  She had called and left messages for him to call her, for a week straight without receiving a phone call back from him.  Stuff like this really hurts my health and my depression.  When I see my daughter hurt, it hurts me.    All of this stress; him leaving, him not giving me monetary support (this past Thursday night when his check hit, within 5 minutes or less of it hitting he'd taken it all out exept for $15.40 that he left for us), not being able to get a start in public speaking for motivation and advocacy like I'd desperately praying for, feeling ill, all of it, makes me have pain and insomnia flares.

I'm not sure where I'm supposed to go with my life, but I'm still clinging to the idea that there's a reason for everything that's happening to me.  I still firmly believe that the reason I became so sick, with so many health problems, is because I'm supposed to educate people with seminars.  I do realize now, that in the grand scheme of things, my daughter and myself are better off without my husband here.  He didn't treat us right, even when he was here.  We both deserve better then that.  Still, I loved him very much, so it hurts.  It's so hard to get used to not having someone to do things with.  Someone to talk to. Someone to give me a hug, and care how I feel that day.  It's boring and lonely.  I know, that eventually I'll adapt though.  Eventually, I'll get a break in paid public speaking and I'll be able to support my daughter and myself.  I'll eventually have that to busy my time, and to get me out around other adults.  I'll be able to focus on making a brand new life for Courtney and I.  One that's better then what we had.

Some days, it feels like the depression is just too much for me.  The stress, feels like it's pulling me under a current and that no matter how hard I try to keep swimming, I'm going to sink anyway.  My fibromyalgia and arthritis was bad before he ever left.  Now, the symptoms are a lot worse.  I didn't think that was possible, but unfortunately I've been shown that it's very possible.  Some days, the pain is crippling.  Some evenings it takes everything I have, to walk across the house.  I moan and groan like I'm 80yrs old from the pain in my knees, every time I stand up.  

No matter how much pain I'm in, or how dark and dismal my future may look to me right now, I know that there is light at the end of the tunnel.  I'm a fighter.  I always have been.  Therefore, I pick myself up and carry on.  I refuse to allow a man I've loved to ruin me.  I refuse to lay down and cave into the pain of my illnesses.  One of these days, someone in the right field will hear my cry.  They'll read my words.  They'll talk to me, and see what my seminar is about, and what I have to offer their audience.  I believe in not only myself enough, but in everyone with a chronic pain illness and/or an invisible illness enough, that I won't shut up.  I'll keep thinking, and reading, and researching, and blogging, and sending emails until someone reaches out a hand for me to grab.  A lifeline that they throw to me, to pull me out of the water.  Then, in my seminars, people will not only hear my voice, but the voices of all of us who suffer from these debilitating conditions.  When will that day come?  I don't know.  I do know though, that it will come.

Friday, May 25, 2012

I Hate My Body



*Warning - This post is more of a major vent.  It's not filled with funny, cute pics. It's the reality of living with fibromyalgia and other chronic conditions. It's my reality.

As a teenager, I knew something was wrong with me.  I complained all the time to my parents that I was tired.  I complained I didn't have energy.  I complained that my knees and my body hurt.  Their solution?  They'd tell me I was too young not to have any energy.  I was too young to be tired all the time.  They told me if my muscles and joints hurt, to quit the cheerleading squad.  It'd always make me mad and it would hurt my feelings, because I truly did feel the way I told them.

As a young adult, I still felt the same way, but it was tolerable.  I worked.  I took care of my 4 kids.  I went to college.  I did the things I needed to do, no matter how I felt.  I thought about going to a doctor because of how I felt, but then I'd talk myself out of it, remembering the words my mother would say to me when I complained to her.  I felt going to a doctor wouldn't solve anything, that they too would just think I was faking.

Quite a few years ago, I felt too lousy to keep working.  My husband told me it was ok, that we could make it off his salary and I could stay home with the kids.  This is what I did.  I still took care of them, along with taking care of the house.  I still felt bad. I still never had any energy.  My body still hurt.

A year ago, a year ago this month as a matter of fact, all of my symptoms started getting worse.  My oldest son had left for basic training in March.  He's in the Army Reserves, and is a combat engineer.  He was stationed at Fort Leonard Wood, MO for his basic training.  In May of last year, I was thrown for a real loop.  Something had come to my attention, that's very personal, and was very upsetting to my husband and myself both.  I DO blame this circumstance for bringing on my symptoms full force.  At that time though, I wasn't aware what was wrong with me. I just thought it was stress.  I wasn't able to clean up my house as well. I wasn't able to keep things as neat and tidy as they had been.

My oldest daughter graduated with her undergrad degree June 5th of last year, from DU.  She was the 1st person from either side of the family to actually graduate from a 4 year program.  We were all so happy and proud of her.  My husband, his mom (this was my daughters step-dad and step-grandma), our youngest daughter and myself all planned a trip to Denver, for her graduation ceremony.  We rented a car and drove from NW Ohio to Denver, CO.  I can't tell you how hard this trip was for me.  By the time we got to Denver, I was physically sick.  I could barely move.  I was in so much pain.  On the way home from Denver, I hurt so bad that it was all I could do to keep from crying.  Exhaustion wasn't even close to describing how worn out I was.  Again, I thought it was just from the stress of the trip.  I still didn't see a doctor.

Finally, late that summer I started going to a new family physician that moved to our area.  While at an appointment for something else (my copd..as the last fam. physician had said it was, but I've had asthma since I was 5 so whichever one) I mentioned to her how bad my body hurt and that I didn't have any energy.    She asked me how long this had been going on. I laughed and told her years, but that it just had gotten a lot worse, since our trip in June. She gave me a shot that she said would help inflammation and ordered some blood work.

About a week later I received a phone call asking me if I had a rheumatologist of choice that I'd like them to refer me to.  I told the nurse no, and asked why I was being refered to one.  She went over my blood test results and told me that my WBC and absolute lymps was high, my SED Rate was high, my CRP was high, and that I had a positive ANA in a speckled pattern.  She said the doctor was concerned that I had Lupus.

It took until October for me to get into a rheumatologist.  That was a long 2 months of sitting and worrying, and trying to become Dr. Google on the internet.  The rheumy I went to had the personality of a wet fish.  He made me feel uncomfortable and he made me feel stupid.  He diagnosed me with Fibromyalgia.  He re-ran all my blood work.  WBC, absolute lymps, SED and CRP was still high, but this time my ANA was negative.  Both times I'd had blood drawn I had a negative RF.  I told him about the knee and hip pain, and he took an xray of my hip and said I have bone spurs on it.  He didn't do anything about my knees, except to tell me to buy a new pair of tennis shoes, that he didn't like the looks of mine and they looked pretty old.

In December I went back to the jerk.  He made me feel stupid that time too.  I showed him a sore I had on my stomach and told him I get them all the time.  They fill so big with puss, that they actually bust open all on their own, and puss and blood oozes out.  They're disgusting.  He barely looked at it and then asked me if I wash my body with anti-bacterial soap.  When I told him no, he said "well try that".  He was just a hurried, cold, jerk about everything and made me a nervous wreck even thinking about going to an appointment with him.  He obviously wasn't the right doctor for me.

I did some research, and decided to call The Cleveland Clinic and ask for a 2nd opinion on the fibromyalgia diagnosis.  I didn't like nor trust the 1st doctor, or his opinions.  I was able to get an appointment with them, for February 1st.  I took it.  This doctor, still doesn't have a wonderful personality but at least she didn't make me feel stupid.  She took her time with me, and she gave me a super complete exam like I had not received from the 1st rheumy.  She agreed with the fibro diagnosis. She also re-ran blood work and this time my WBC, and absolute lymps was high, and so was my CRP but my SED rate was normal.  She ran about every blood test under the sun, but looking over my online test results she did not run an ANA again for some reason.  She also diagnosed my with arthritis in both knees, AC Joint Arthritis in both shoulders, and arthritis in my neck and my back. I already knew about the arthritis in my neck and back, due to a CT scan I'd had about a year prior.  That CT is also how I found out about the bone spurs on my spine, and the Tarlov Cysts running all up and down my spine.  She knew I was there for a 2nd opinion but she just assumed she was taking over my rheumatology care. That was fine with me, as I was going to ask her to take me on anyway.  She said I'd be seen in her Fibromyalgia Clinic.  Why they call it that I don't know, because I just check in at the rheumatology desk and go in a room in that department for it anyway lol.

So, this post is already long and I've went through this history with you all, just to build up to huge moan and complaint.  My body is now so wrecked.  In so much pain.  So tired. That I can't work.  I can't even do household chores without crying.  Even with an Ultram pain pill in my I still cry most of the time, and don't even get to finish the cleaning or cooking task I'd started.  My memory is horrible.  I have bad insomnia. I honestly don't have a day where I'm not in pain.  I'm not talking about a little bit of pain either.  I'm talking about excruiating, debilitating, make you cry, pain.

The day before my husband walked out on me, he'd come home and told me that he has far too much stress on him and we had to find a way to decrease his stress.  I asked him what he was so stressed out about.  The very first thing that popped out of his mouth was "your illness".  Then he went on to add "bills" and finally finished up with "and Matt".  That is our youngest son, who in all honesty had been bringing stress to the table.  Wow, I felt like total crap that the very first thing he said was "your illness".  I apologized to him. I told him we'd find a way to help with his stress level.  I truly believed everything was going to be ok.  I had no idea at all that he was going to go check out hunting land the next morning to not return, or call, or anything for 2 more days after that.  Then, it was him sending a text to our 16yr old daughter around 11am on Easter morning saying "I'm leaving your mom, but I'm not leaving you".  Who does that?  Who in their right mind sends a text to a 16yr old child telling them they're leaving her mom, before even discussing it with the spouse??!  He showed up around 11pm that night to pick up his clothes and walk out the door.

When he left he told me "I know you're too sick to work.  Don't worry, I'll still pay all the bills and make sure you get your medicine and to your doctor appointments.".  The next afternoon he came over and we made up an agreement, which we then took and had our signatures notorized on the agreement.  It was enough money a week to pay the bills, + a tiny bit for incidentals and $75 a week for food.  Unfortunately, he hasn't made good on that agreement once yet.  2 weeks ago I was upset, because as soon as his check hit the bank, he withdrew $700 and left me with $61.  Now, this man lives with his sister rent free.  He doesn't have any bills at all.  He doesn't even have a car payment.  I have custody of our daughter and I have the house, along with all the expenses of having a daughter and a house.  Yet he left me with $61 while keeping $700 for himself.  So last week, I figured out if I wanted to pay my bills that were due I'd better beat him to an ATM that night.  I did, and even though he'd shorted me almost $1000 from what he agreed to pay, since he'd left me April 8th, I only took $37 more then the agreement had been for.  My lawyer and my dad had both told me to take EVERYTHING if I got to it first.  I couldn't, in good conscience though, do that to him.  Even though he'd only left me $61 the week before, I just couldn't do it. I'm not that type of person.  That still left him $273 last week.  This week, tonight, he called and reported my ATM debit card lost or stolen, and had it deactivated on me.  He pulled his entire check out.  He left me exactly $15.40 to live on.  I've sat here with tears running down my face since 11:30pm.

So what's my point in this huge, long, complaining post?  I hate my body.  Plain and simple, I hate my body. I hate it, because I can't work.  Not only is it bad that I can't bring in a paycheck to support myself and my daughter, and can't make money to pay the bills with, but I can't even have the dignity of earning a paycheck.  I'm denied that pride of working and earning my own money.  I can't feel the empowerment of knowing that I earned this money.  My husband's stress level?  The 1st thing out of his mouth was "your illness".  The 2nd words out of his mouth was "bills".  So, if I didn't have a crappy sick body, he wouldn't have been stressed over me having an illness.  He also wouldn't have been stressed about bills, because I could've gotten a job and helped out paying those bills.  I've thought long and hard tonight, about whether I hate my body, or I hate Fibromyalgia, Arthritis, Tarlov Cysts, Bone Spurs, IBS, Asthma/COPD.  I came to the conclusion that while I do hate these diseases, I have to hate my body the most because if my body would've just cooperated, then none of these crappy diseases would've invaded it.

I've racked my brain so hard the last few weeks, trying to figure out a job that I may be able to do to earn money.  I just can't figure anything out because 1. I'm in bad pain all the time.  I can't stand for more then 5-10 minutes at a time without it bringing me to tears.  I can't sit for longer then 10-15 minutes at a time, or I'm in pain + so stiff when I go to stand that I can't hardly walk.  2.  I can't rely on my memory. Fibro Fog is bad.  I sat for almost 5 minutes today with my hands on the keyboard, trying to think of what the heck my FB password was.  I've had this same dang password for years now!  3. My insomnia is terrible. Sometimes I can't go to sleep at all and I'm awake for almost 48 hours straight.  Sometime I can get 4-5 hrs of sleep. It isn't even safe for me to drive a car when I haven't slept for 48 hours at a time, let alone the additional brain fog it produces.  The only thing I can think of is public speaking.  A seminar wouldn't last over 2 hours and I could sit/stand as needed while doing it.  It isn't an every day job.  It'd be a couple times a month, for a couple hours at a time.  My oldest daughter, who graduated from DU last June, is now 1/2 way through the graduate program at DU.  She suggested to me a couple nights ago that I write articles on what it's like to live with fibromyalgia and submit them to magazines.  She also suggested I write a book, on the same topic.  I actually got excited about the magazine article submission idea, but all it took was 10 minutes of researching to see that wasn't going to happen.  Most of them, says in the submission guidelines, that you have to already have been published in a national magazine to even have your article read and considered.  The one's I found that you didn't have to already be published, only accepted submissions on certain topics. -One's that living with fibro and/or chronic pain conditions didn't fit into.  A book?  I hardly believe that would ever pan out either. Yes, I know you can self-publish on Amazon.  I have a friend who's husband has self-published 3 or 4 Kindle books on Amazon now.  I've just been out of school too long to really have the grammar I'd need for a book.  Also, there's already about a million books out there on these topics so would anyone really buy it?  I don't know.  It all just comes down to I hate my body. I feel that because of it, I've not only lost my husband, but I've lost my dignity and pride.  I've lost the ability to provide for myself and my family. Between the fibromyalgia induced depression, and my husband not even caring if I can pay the bills and support our daughter, my depression is pretty bad tonight.  Again, I hate my body.

Wednesday, May 23, 2012

New Feature To The FibroFrog

Since most of us can't work full time due to our chronic conditions I've been trying to bring contests to this site that may help us all out some.  In addition, check out the new ad box on the right hand side of the page.  When I first uploaded it, it was showing an ad to get a free sample of the new Tide Pods (which I love by the way LOL).  Keep an eye on that box several times a day, to see what kind of free samples & coupons you may be able to score!

**I'm an Izea affiliate, and will be paid a token amount for actions taken from that ad box.  I just wanted to make sure that you all are aware of that so as not to unintentionally mislead someone.**

Trudeau Stress Less Review & Giveaway

Good luck to all of my readers! This is an awesome giveaway!!
~ This Review & Giveaway is done by SaraLee's Deals Steals & Giveaways ~
Trudeau has expanded its exclusive Stress Less™ line of kitchen tools designed to reduce the strain on hands and joints. Ideal for those with arthritis or limited hand dexterity, these products make everyday kitchen tasks easier and more enjoyable for everyone. Each item comes with a lifetime warranty.

I was able to try this set of set Stress Less line of kitchen tools and loved them. I never used fresh ground pepper or salt before. Now that I have I will never go back. I love how this set is so easy to use. The can opener surprised me the most. I thought it wasn't working and was complaining to hubby when the top came off and I was amazed at how clean and very easy it was to use. Hubby loves the Garlic Press. He loves garlic and was very pleased at how easy the Garlic Press was to use. Last night we used the Rotary Cheese Grater to have fresh cheese on our lasagna and it was great. My 13yr old son likes the pizza cutter because he can use it to cut his pizza on his own. This family gives the Trudeau Stress Less set 6 thumbs up!

Stress Less Easy Grind Salt and Pepper Mills
Grind salt and pepper effortlessly with the simple
turn of a crank. The Stress Less Easy Grind Salt and
Pepper Mills feature a stay-sharp carbon steel
grinder that has four times more power for effortless
grinding. Ergonomic design and soft touch handle
make these mills a pleasure to handle. SRP: $34.99

Stress Less Safety Can Opener
Trudeau’s Stress Less Safety Can Opener features
a rotating crank arm that requires 50% less effort
than a traditional can opener. Safety cutting
mechanism cuts on the side of the can (while never
contacting food), leaving safe smooth edges. Lid
pliers incorporated for hygienic, safe lid removal.
Compact for storage. SRP: $19.99

Stress Less Garlic Press
Uniquely designed to rest on the counter for
maximum leverage, the Stress Less Garlic Press
allows users to press without the stress! The stress
reducing design allows for the use of body weight
to press the garlic. Pivot chamber allows for easy
cleaning. Dishwasher safe. SRP: $19.99

Stress Less Rotary Cheese Grater
Trudeau’s Stress Less Rotary Cheese Grater requires
minimal effort to grate cheeses and chocolates.
Ergonomically designed to reduce pressure on
fingertips and eliminate wrist torsion, the cast iron
handle rotates easily which activates the stainless
steel grating drum to turn. The vertical design allows
cheese to fall directly on food. SRP: $19.99

Stress Less Pizza Cutter
The unique, ergonomic handle on the Stress Less
Pizza Cutter can be used in one of two ways: either
pushed with the handle or held from over the top.
Handle features an integrated finger guard and the
large diameter stainless steel cutting wheel removes
easily for cleaning in the dishwasher. SRP: $12.99
You can view all the products that Trudeau has at http://www.shoptrudeau.com
;

Now for the Giveaway: One lucky person will be able to win a set of 6 Stress Less kitchen tools (shown above). The giveaway is open to the US only. To enter, simply do the tasks on the Rafflecopter widget below and you're set to have a chance to win!

a Rafflecopter giveaway

 
*I received one or more of the products mentioned above for free. Regardless, I only recommend products or services I use personally and believe will be good for my readers.*

Tuesday, May 22, 2012

Dear God



"Dear God,
I grew up hearing the phrase "God helps those who help themselves". Well, when are you going to give me that help? Years ago I worked 3 part-time jobs (worked Mon-Sun. 7 days a week) plus carried 18 credit hours in college, as well as being a single parent to 4 children ages 6 and under. In my situation now, I've sent email after email. I've blogged, I've tweeted, I've used every social media network I possibly can trying to make a new career for myself. Still not a break. I certainly feel that I've tried my best to "help myself". All I've received for my efforts is an incurable illness, a husband who cheated and left me, sadness, rejection and disappointment. I have gained a few more "fans" to at least show me I'm not alone in my daily, chronic pain. For that, I am thankful. Everyone says to me "In HIS time, things will come together for you". When's that time? Will it ever come? Will I ever be able to feel happy again? Or that my life is worth something? How many more nights can I tell myself that "Tomorrow will be the day. Tomorrow things will start to turn around for me"? I know I'm supposed to have patience God, but patience doesn't pay the bills or buy food. Patience doesn't give me a sense of security or tell me that everthing's going to be alright. Patience doesn't wipe away the tears that are running down my face, nor does it cure my illness or the illnesses of those around me who are also suffering. I've cried out to you Lord, begging for your help. To at least have a sense of peace. To at least not feel so alone. I don't know what else to do."

This was my Facebook status last night.  I had a friend comment and ask me "Can anyone you're contacting about a seminar see this?".  I told her no, that my facebook is locked down tight (due to my impending divorce) and only friends can see anything.  Not even "friends of friends" can see photos.  I've thought about this all day, and you know what?  I don't feel that there's anything in that status that would "hurt" me in my prospects of conducting a chronic pain/invisible illness seminar.  At first, her comment made me feel ashamed, like I'd posted something really wrong.  Her comment made me feel weak. 

After thinking about this all day, I've decided that I'm not going to feel bad for posting my true feelings at that particular time.  I'm not going to let it make me feel weak.  I've decided that her comment, is one of the reasons why I want to conduct seminars on living with chronic pain/invisible illness.  She obviously doesn't get it, and that's ok.  She's even a nurse, and a very good one at that, but she just doesn't understand how my illness works.  She probably doesn't have any experience with it. 

When living with a chronic pain/invisible illness that there's no cure for...or even a solid treatment plan for, depression is a normal symtom of the illness.  Depression is even listed on everything you read, as a symptom of fibromyalgia.  Even when things are going as good as can be expected in a person's life, when they have an illness like mine, they still have bouts of depression.  With my husband walking out on me April 8th, and already in a new relationship with an old highschool girlfriend, not paying me the money I need to support my daughter and myself, and the fact I haven't worked in years due to my health, I'm under a lot of pressure.  Add in my illnesses, and in all honesty I think that I'm actually coping pretty good.

Sure, I get sad.  I cry.  I feel depressed sometimes, but I get out of bed every day.  I do what I can to clean my house with the help of my kids.  I keep up with 2 blogs and 2 facebook fan pages every day.  I keep beating the bushes, looking for opportunities to possibly present a seminar. Public speaking for advocacy and awareness is my passion, and I won't give up on making a career out of it.  I keep up with my medicines and doctor appointments.  I've taken the initiative to make phone calls that need made, to speak to attorneys, to try and get bills into my name and keep up with them.

In all honesty, I think I could be doing a whole lot worse then what I am right now.  After thinking about this all day today, I decided that if anyone reads my status from last night that had been considering hiring me to do a presentation decided not to hire me because of those words, then they're the one's who really need to hear my presentation.  They need to be made aware of what it's like to live the daily life of someone with a chronic pain/invisible illness.  What they will see if they read those words, is that they're going to get a presentation from a person who's honest.  From a person who isn't ashamed to tell the truth of what living a life such as mine, is like.  Someone who's willing to stand up and tell people how impurfect life is when you're faced with a chronic illness.  They will see that I don't quit.  I don't give up.  That I'm strong enough to keep facing my life day after day even when it's tough.  I hope they see the passion I have, to try and educate about people like us. People who live their life waiting, hoping, and praying for a cure.  The only way we'll ever have a cure, is if enough people hear our stories.  If they start to truly understand what life is like for us.  If enough demands for funding is made.  If pressure is put on political parties and pharmaceutical companies, to fund research.

I'm not afraid of my status.  I'm not ashamed of my status.  I'm not ashamed of my feelings, nor of my illnesses.  After thinking about it all day long, I'm proud of my status.  Since my facebook is locked down tight, I've decided to take that status, and turn it into a blog post.  That is how strong-willed I am.  That's how honest I am.  That is the type of professinal speaker you'll get, if you hire me.  I will never apologize for my true feelings.  I'll never apologize for speaking the truth.  I hope and pray, that I'm the type of speaker that you'd be proud to hire.

Sunday, May 20, 2012

All The Small Things

Ok, I realize that the song doesn't have the meaning I'm talking about in this post, but I love it anyway and the title fits LOL.  Living with chronic pain I'm reminded almost daily of all the small things that I can't do now.  Or that I can't do without causing my body pain and sometimes setting myself back a couple days in a row afterwards.  The heat and humidity?  It leaves me completely wiped out, plus affects my asthma/COPD.  I walk around sounding a bit like Darth Vader.  Walking around the block?  Somedays I just can't.  I couldn't make it across the street.  When I do, I'm left completely exhausted for the rest of the day at least.  Sometimes the following day or two too.  Setting up a yard sale?  Yeah, I couldn't.  I helped with a few things, but overall my kids set it up.  The little bit I did do, still  has me completely wiped out.

Doing something as simple as laundry I sometimes can't do.  I have to have my daughter switch the clothes from the washer to the dryer, then take them out of the dryer for me.  My back pain won't allow me to bend and stoop to do it.  Sometimes it even hurts my arms, from reaching and outstretching them.  Sometimes bending to this, or other times leaves me dizzy. 

A few minutes ago I walked out the back door to turn the hose on.  We're in the process of filling our above ground pool.  I turned the hose on, then came back in here to sit down.  I'm completely exhausted now.  My head is even hurting since doing it.  How ridiculous is that?

My old rheumatologist and the new one both asked me if I have chest pain.  I told them both no.  Starting this past Wednesday though, I've had bad chest pain several times a day.  I guess I get to add that to my symptoms when I have my next appointment. 

About a week after my last appointment in February, I started experiencing Fibromyalgia Numbness in my left hand and fingers.  It was so bad for awhile, that I couldn't hardly type.  It was the weirdest sensation to have, and to have it just stay like that.  Eventually, it started getting better and was almost completely gone.  Now, it's starting to come back again. 

Some days, It hurts my arms, hands and fingers to even type.  I couldn't do a blog post, without causing myself severe pain.  Almost daily my arms ache and hurt too much, that even reaching out to take a plate out of the cabinet hurts them.  To make supper, I have to take a pain pill about 30 minutes prior, then I'm still usually still in such pain that I'm blinking back tears before I'm done.  That's the only meal I cook.  Everyone has to fend for themselves for breakfast and lunch.  Running a sweeper?  Forget it. I'd be down the rest of that day, and usually the next too.  Even standing up and sitting down causes me a lot of pain.  My poor knees snap and crack and I have shooting pain. Shaving my legs?  I usually can't without help.  Now the I'm getting a divorce I don't have a choice.  It took me over 30 minutes and completely wiped me out.  It also gave me charley horse type cramps in my stomache, sides and back.

There's more.  Many  more simple things  I can't do now, or do with difficulty and hurting myself.  A few weeks ago, when I went grocery shopping I was in such pain and physically exhausted afterwards, that on the way home I started crying.  I couldn't help it.  The tears were just silently running down my face.  That particular incident really hit me hard.  It showed me how difficult living my life without my husband was going to be.  We always went grocery shopping together and if I needed something that was down low or up high he got it for me and put it in the cart.  He'd put everything on the register belt to be scanned, then put all the bags back into the cart.  He'd load it from the cart into the car, then bring it inside the house for my daughter to put away. 

If I can't even do the small things in life, how am I supposed to live?  How am I supposed to do this thing called "Life" being single?  What will I do when all of my kids are grown and out of the house?  My youngest is 16 years old.  She'll be a senior next year, then off to college.  It may sound dumb, but I actually feel panicked when I sit and think about it.  -Yep, that dang anxiety that accompanies fibromyalgia.  Sitting here writting this out, has tears stinging my eyes that I keep blinking back. 

People who don't live with a chronic pain and fatigue condition will never understand these things.  Reading it, may not even sound realistic to them.  I could see someone reading this post and saying to themselves, "That's absurd. This lady is just lazy.".  I assure anyone who may be reading this, it's all very real.  Do I like it?  Heck no.  I hate it!  I hate fibromyalgia.  I hate COPD.  I hate arthritis. I hate IBS.  I hate all of these, among other illnesses and diseases.  I'm not sure how to live my life.  I'd like to think that I could figure out ways to still live a fullfilling life, but I'm not sure it's possible.  I'm not sure it'll ever be possible in my lifetime.  My hope, my prayer though, is that with enough awareness, education, and advocacy that maybe more money will be dedicated to research so that by the time my daughter is my age, she may not have to live her life in the mannor I'm living mine.  She has PCOS, and after I was diagnosed with fibromyalgia I'm pretty sure she has it too.  She'd been through all kinds of tests, including expensive tests that had to be sent away to see if she had any type of muscles disease to cause her pain in her muscles.  My rheumy won't see children though.  I need to find one that does and have her tested.  Please, advocate for a cure.  Spread awareness.  Educate those who have misconceptions about our illnesses.  Try to get them to understand.

Friday, May 18, 2012

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Thursday, May 17, 2012

Win A Subscription To All You Magazine

All You Cover Image Are you ready for another chance to win a 1 year subscription to All You Magazine? By popular demand, MyCouportiera has joined up with RingerNation to bring you this amazing giveaway again!

Wednesday, May 16, 2012

The FibroFrog Was Embarrassed Due To FibroFog


I've been sitting here waiting for a call to tell me when all of my appointments were rescheduled for, after last Thursday's Building A shut-down at The Cleveland Clinic.  Monday, I told my dad that that they told me I'd be called, but that since my phone number had changed they wouldn't be able to reach me.  I told him I had to remember to call them Tuesday, and give them the new number.  Tuesday (yesterday) came around and I forgot to call them.  I remembered around 6pm when I was on the phone with my mother.  I said "Oh shoot!  They're not going to be able to call me with my new appointments because I forgot to call and give them my new number.".  My mom said that she'd call me today around 1pm and remind me to call them.

At 12:40pm today, I remembered to call them all on my own.  I was soooo proud of myself that I remembered and didn't need my 69 year old mom to remind me.  -How sad is that?  Me, 41 years old needing to be reminded of things from my mother that's 69 years old.  I picked up the phone and called the direct line number to my doctors nurse.  Her name is Pat, and she's really sweet.  When she answered I told her that I'd been waiting on my rescheduling call, and it dawned on me that they wouldn't have any way to reach me because I needed to give them my new phone number.  She quickly said "Oh...I think you gave that to me last week didn't you?".  I was genuinely confused for a moment and told her "No, I don't think I did?".  She said "Yeah, I'm sure you gave it to me last week.  It hasn't changed again that quickly has it?".  By this point, I'm starting to really feel embarrassed.  I told her "No, it's only changed once in the last 5 years".  She told me to give her my social security number so she could check and make sure.  Sure enough, she read off my new phone number to me.  I was really embarrassed, and told her yes that was the correct number.  I told her I was sorry, that I honestly can't remember giving her the number last Friday.  She laughed a little bit, and then said something along the lines that she does that sometimes too.  I felt like a complete fool!!  I laughed a little and told her that I've really been having some pain and insomnia flares, and that I guess this proves that I must be having fibro fog flares too, that I really need my appointment.  She told me if I don't hear from the scheduling department within a few days, to give her a call back.  I seriously was mortified though.



I know that I shouldn't be too hard on myself about something trivial like this, but I can't help it.  I just can't describe how I felt when the nurse said "It hasn't changed again since last week, has it?".  I'm happy no one was downstairs to see me, because I'm pretty sure my face was probably as red as that question mark above LOL.  It's little things like this that get to me.   They make me detest this illness all the more.   They remind me that I am sick.  Things like this scare me too.  If I'm already this forgetfull at 41 years old, how will I be when I'm 69 like my mother is?  Will I even be able to function?  Between the memory loss and pain will I have to be put into a nursing home?  Of course, this type of thinking leads me into the depression that already accompanies fibromyalgia.  Makes me think things like "Yeah...this is why my husband walked out on me and wants a divorce"....."This is why I'll probably have to live the rest of my life single and lonely".  Just not good thoughts at all.  Even typing this out, is now making me tear up a little bit again.

It's funny, how something so little, can spiral into so many feelings.  So many emotions.  Now, I know "hate" is a strong word, but I can honestly say that I hate fibromyalgia.  I hate living every day of my life in pain.  I hate being scared.  I hate not remembering things.  I hate not being able to sleep.  I hate that when I do sleep, I awake feeling like I haven't slept.  I hate the stiffness in my joints when I wake up...and after I've sat for awhile without moving.  I hate not knowing if I'll be able to go out and do something as simple as pushing my granddaughter around the block in her stroller tomorrow...or even later today.  I did that today, by the way.  Courtney, my 16yr old daughter, and I were watching baby Leah today for a bit while my son and daughter in law went to a doctor appointment.  Court asked me if I wanted to go with her to take Leah for a walk.  I told her yes, that I'd enjoy getting out of the house and into the sunshine.  By the time I returned home, I felt as if someone had stuck an I.V. into me and sucked all of my energy out.  I had to will myself to get up to go to the restroom.  I'm in such pain tonight from it, that I can barely walk.  I hate that I can't even do something as simple as going for a walk on a nice spring day.  I'll say it again.  I hate Fibromyalgia!

Tuesday, May 15, 2012

The Face Of Rejection


Another rejection email came in today.  I had received a lead from a lady on FaceBook, to contact the pastor of her church to see if he'd donate space at the church for me to hold a seminar, then sell tickets to the seminar to make my money.  This lady is local to me, within about a 30 minute drive.  She too, lives every day in chronic pain and wants me to get a seminar scheduled somewhere so that she can attend.  I was really hopeful about this one.  Unfortunately he emailed back today saying that they don't donate nor rent space out at the church and they'd never sell tickets to a speaker.  I'm not gonna lie, with this one, tears stung my eyes but I blinked them back. 

I knew upfront that I'd face a lot of rejection in the beginning.  My hope is that after I have done one or two, that word of mouth will help me with booking more in the future.  Just because I've been rejected by 3 or 4 places in the past week, I'm not going to quit.  I'm passionate about this.  I need this.  Others that live every day of their lives need this too.  I still feel that this is what I'm supposed to do, therefore when the time is right, the doors will open.   I just kind of feel like I'm hitting a brick wall.  I'm running out of ideas of where to turn, to try and make this happen.  I had received an email from a Dr of Rheumatology at a local medical school that told me the university didn't have funds for this type of thing, but that my best bet would be to contact some drug companies.  They at least may be willing to provide me with grant money to set up my own seminars.  The old saying it takes money to make money is unfortunately very true.  If I had the money, I could just book a conference room at a hotel, and pay for advertising in newspapers, etc. to the event.  As it is, I don't have a pot to piss in right now though. 


I'm not looking to get rich.  I don't care about being famous.  I just want to do something that I'm passionate about, advocate for something I believe in, and make a comfortable living to support my daughter and myself.  I'm only planning on setting ticket prices at $15 for one, or $25 for two.  I just want to get the word out about what it's truly like to live your life in chronic pain.  Present some of the latest research, and pass along some coping mechanisms and resources for people with a chronic pain and/or invisible illness.  My bills are fairly minimal and as long as I can make enough money to pay them on time without worry, buy groceries each week, buy necessities that my daughter and myself need, and have a little set back in case of an emergency, I'd be very happy and content. 



In the meantime, I've tried a few channels (including etsy) to sell a some of my photography work to bring in a little cash.  That too, has gotten me nowhere.  Between all of the rejection, physical pain I'm in every day, and the mental pain and worry due to my impending divorce, it would be so easy to just lay down and cry, and never get up again.  I refuse to do that though.  I'm a fighter.  I always have been, my entire life.  Every day I tell myself to "just hold on".  Tomorrow will be the day that I get a break and things will start getting easier.  I tell myself that sooner or later, something good has to happen to me, because I'm trying so hard to make good things happen.  I'd heard all my life from my mother, that "God helps those who help themselves".  That's what I've been trying to do.  I've even done my best to stop asking "Why Me?" about things, because I'm a believer that everything happens for a reason and that down the road the answer to that will be made clear.  I have to admit though, it's starting to get really hard to remain optimistic.  One can only tell themselves that tomorrow will be a better day so many times, before it becomes hard to believe that.  Alas, I will keep racking my brain trying to make things happen.  Trying to come up with ideas.  I may be down right now, but please don't count me out yet.
 

Sunday, May 13, 2012

Photo's For Sale

So, I guess this post doesn't really have anything to do with Fibro, Arthritis, or Chronic Pain except for the fact that because of these conditions I can't work.  Since hubby left me 5 weeks ago, he hasn't been playing fair with the money, giving me what he promised he would in a notorized statement.  Because of these factors, I'm going to offer up a few prints of my photography for sale.  I'm offering each one in an 11x14 size, unframed, for $35/ea..shipped anywhere in the U.S.  I can have as many of each one printed as needed.  If you're interested in purchasing one of them, please leave me a comment.






























Happy Mother's Day 2012


Although I'm having a bad pain day, I couldn't help but to get down on the floor and take some photo's of my granddaughter this afternoon.  She'll be 10 months old May 16th.  Leah is my step-granddaughter, but I will never treat her as a "step" anything.  To me, she's my granddaughter.  Unfortunately the string of "bad luck" in my life continues for the time being.  Leah's mommy and my son, suffered a miscarriage yesterday morning of my 1st bio-grandchild.  I told them today, it just makes Leah all the more special to all of us.


Look at this big girl!  Not quite 10 months old yet, and she stands by herself.  She walks handing onto furniture or your fingers.  It won't be long until she takes off walking all on her own!






I wanted her to sit...she wanted to crawl.  Therefore, the picture was snapped just as she went forward to try and crawl away, so it's a little blurry.


Happy Mother's Day to each and every one of you.  If you're not a mom yet but hope to be someday, I wish you all the luck in the world.  Being a mom is a hard gig, but one that's worth so much more then the effort.  My children, grandchild, and future grandchildren are my life.


Saturday, May 12, 2012

National Fibromyalgia Awareness Day - Do You Know These Facts?


Anyone with Fibromyalgia can tell you how "real" this condition is.  How debilitating it can be.  How much pain, both physically and mentally, they deal with on a daily basis.  Many people who do not have Fibromyalgia will say things such as Fibromyalgia isn't real.  The pain is in a person's head.  There's no reason why someone with Fibro can't exercise and that exercise would help the pain. 

I'm here to attest, Fibromyalgia is a very real condition.  When a person has Fibromyalgia, or any other chronic pain condtion, they often go through the grief cycle.  They have to accept that they have this limiting condition, process the information, and come to terms with it.  A lot of times, it takes quite some time for people to get past the denial stage, and the anger stage.  I'm still not sure that I'm all the way past the angery "Why Me?" stage, to be completely honest.

Doctors and researchers still aren't quite sure what causes a person to get Fibromyalgia, but there are some risk factors that have been proven to have a correlation to a person getting Fibromyalgia in their life.  The two risk factors that I found the most interesting, are being born prematurely and having bad growing pains as a child.  My doctor, Carmen Gota, at The Cleveland Clinic, is the one who asked me if I was premature (yes, I was) and if I had bad growing pains as a child (I did.  I remember laying in bed, and laying on our living room floor bawling in pain and agony in my legs as a small child). 



Research has proved that people with Fibromyalgia have a real psysiological and neurochemical problem.  Research proves that there's a malfunctioning of the central nervous system, commonly called the CNS, which includes the brain and the spinal cord.  There appears to be a variety of abnormalities that occur in the peripheral soft tissues (the muscles and connective tissue) and the peripheral nervous system that communicates with the CNS. 

CNS research on Fibro has shown alterations in pain-related chemical transmitters, reported in the spinal fluid.  Elevated levels of pro-inflammatory cytokines have been found by may research teams.  These are the substances that form a communication link between your body's immune system and the neurological system. 

Brain imaging has shown that the blood flow and metabolic processes in the brain are significantly disturbed.  The autonomic nervous system is not functioning properly in people with Fibromyalgia.  Research on the primary pain conrol system in the spinal cord shows that it's not filtering out or decreasing incoming noxious signals from the peripheral tissues.  Even the "Fibro Fog" one suffers with Fibro, has been documented by memory tests from researchers, proving an inability to concentrate.  Research has also found that Fibro patients have high levels of nitric oxide-producing enzyme, which explains why patients have an intolerance to exercise.  -No, they're not just being lazy.  It hurts, it's hard, and exercising can leave one almost crippled in pain.

There is more research.  There is more proof, that Fibromyalgia is a very real, potentially debilitating, condition.  If you suffer from Fibromyalgia, don't ever let anyone tell you that it isn't real, or it's all in your head.  Start pulling out some facts about Fibromyalgia if you're confronted by someone who says it isn't real, or it's that bad.  I had someone say to me once, "Well, at least you don't have cancer.  Be grateful for that, because Fibro won't kill you.".  My response to that was "No, you're right, Fibro won't kill me.  It assures me that until enough funding, enough research, enough demand to find a cure is made, that I don't have any chance at being cured.  It assures me that I will have to live every. single. day. of the rest of my life in pain and feeling like a fool when I can't remember a word in the middle of a sentence.  When I walk to the kitchen then don't have a clue why I just walked there.  I don't have chance of getting better, as most cancer patients do.".  I refuse to let anyone belittle my condition.  My condition is very real, and very hard to mentally deal with, let alone the physical aspects.  Education is key to demanding more research and a cure in the future.  Do your part.  Join me in advocacy and awareness in a very real, very painful, condition.


Thursday, May 10, 2012

You're Kidding Me, Right?!


Remember my post last week that The Cleveland Clinic called me and told me the Dr. wanted me to have some other tests done, and a consult with another department?  This was a week before my scheduled appointment for today, May 10th.  They loaded up my day, starting at 10:45am with the last test scheduled for 3:15pm directly after my rheumatology appointment. 

I get nervous when I'm with the doctor, and half the time there's things I want to discuss with her, but then forget.  Partially due to my nervousness and partially due to the dang Fibro Fog.  This time I was good.  I sat and wrote out a list of important things I wanted to discuss with her.  I knew, after having so many appointments in one day, and after the 2-hour drive to get there, I'd never remember everything without my list. 

I was actually excited to talk with my rheumatologist today, because I've really been struggling.  I need some sort of med change because what I'm doing, just isn't enough.  I've had some days lately where I can hardly move my legs enough to walk.  The insomnia has been terrible.  Depression has set in between the physical pain and the fact my husband walked out.  I've been worried and stressed about money, because I hadn't worked in years and my pain and fatigue level is just too much right now for me to work.  I have a lot on my plate right now both physically and emotionally.  I've been doing a lot of research, because I've felt like something has been overlooked due to the fact that I always have an elevated SED rate, always have a negative RF, and I've had 1 positive ANA and 1 negative ANA.  I wanted to discuss the idea of polymyalgia rheumatica with her today.  A dose of steroids and maybe we'd have an answer.  It can't hurt to try, right?  I may get lucky and reduce and/or relieve the pain.  My symptoms fit and my blood results fit.  I was soooo excited to possibly have an answer to reducing my pain today.

Of course, the insomnia was bad last night.  Knowing that I had to get up at 6:15am because my STBX that I just caught cheating on me Saturday, was going to be here to pick me up at 7:30am didn't help matters any.  I was worried about being in the car with him for the ride there and back (not worried about anything physically...he's never ever been physically abusive, but I was worried for myself emotionally because I love him so much and I'm so hurt). I was also worried about these tests and what the results would show.  I took my amitriptyline and my ultram.  I even took a dose of NyQuil to try and knock myself out.  I finally fell asleep between 2:30-3am.  When 6:15am rolled around, I'd have rather taken a beating, but crawled my way out of bed.

We get to the hospital campus, and are trying to find parking garage 2, but we keep hitting all of these one way streets.  STBX was mumbling a few curse words and I kept apologizing.  He kept telling me none of it was my fault, so to quit saying "I'm sorry".  We finally find the garage, but of course all of the spots on the same level as the catwalk that leads to the building I needed to go, was taken.  We go up one more level and finally find a place to park.  I felt nervous about the tests I was getting ready to do, but boy did it feel good to get out of the car.  My back, neck and knee was killing me after the 2-hour car ride.  We get to the cat walk and open the door to see policemen and a hospitality worker telling everyone to turn around and leave.  What?!  The guy says to us "I'm really sorry but all appointments in this building have been cancelled for today.  This building has lost water and power.  Please turn around and leave.  Call tomorrow to reschedule your appointments.".  Oh. My.  Gosh.  You're kidding me, right?!  "No mam, I'm not.  I apologize for any inconvenience this has caused.  Please call tomorrow to reschedule your appointments.". 

So after walking back to the car, and heading back home, I started crying.  I felt silly and didn't mean to, but I couldn't help it.  STBX looked at me and was like "Why are you crying?".  Oh boy did I want to unload and tell him ALL the reasons I was crying.  I managed to choke out that I was crying because for 1. I'd borrowed gas money to get there from my parents.  2.  STBX had to take a vacation day (that he was already in arrears on but he has a GREAT company who approved it anyway knowing my health issues and that he had to take me to Cleveland.  3.  Because I was hoping for a med change because I can. not. take. this level of pain for much more.  4.  Because I was hoping to be able to look up todays tests, tomorrow online on the MYCHART site.  After having almost completed nursing school, I know what I'm looking at and I'm really really worried about my WBC.  If it's elevated again, I have to go see a hematologist.  That scares me.  5.  I'm crying because I just can't take one more thing going wrong in my life, at this particular point in time.


So yep, I was a big 'ole cry baby for awhile, on the way home.  I just couldn't help it though.  My phone and internet was to be turned on yesterday, but nothing was working.  We called them and they said everything was turned on, so they'd have to send a repairman out today to see what was wrong.  About 10 minutes after we returned home from Cleveland, the guy showed up.  There was a problem with our line, down on corner.  He had it fixed with about 45 minutes though, so all is good on that front.  -I'm finding something good to be grateful for today LOL.  I really missed connecting with those on my facebook fan page the last few days.  So I honestly am really grateful to have my serviced up and running.  Hopefully I get some rest tonight, because I'm so tired that the Fibro Fog is bad.  If I've made any typo's, please excuse them.  =)  I hope everyone has a wonderful night. 

Monday, May 7, 2012

Here I Go!


I really love this photo "Education = Future", because it's so true.  It's way more than what meets the eye at first glance.  One would look at this, and think along the lines of "You have to get an education to make a career for yourself, in the future".  True, very true. This is also true though, in that if people are educated on any subject or topic they then understand it better.  If there's better understanding, there's more empathy.  More compassion.  More demands to find answers and cures.  This is where I'm going to come in at.  I want to educate as many different people as I can about chronic pain and invisible illnesses.  I want to educate everyone from educators, to medical personal, to stay at home moms, to work out of home moms, to researchers, to lawyers, to students.  Pretty much anyone and everyone. 

I won't make any bones about it.  I don't have a fancy degree.  I don't have any initials behind my name.  Heck, I haven't even had a college level class on public speaking.  What I do have though, is first hand knowledge of what it's like to live a life with invisible illnesses, and being in pain every single day.  Also, I have a burning desire to educate on these topics, along with a strong will and I'm not afraid of rejection off the bat.  I know with hard work and dedication, I can do anything I set my mind to. 

My oldest daughter is 22 years old.  We aren't a rich family, but we always told our children all through their lives, that they can do anything they want to do as long as they worked hard for it.  My daughter was still 17 when she graduated high school.  She went to a nearby state university, utilizing some scholarships and student loans.  She carried 18-21 credit hours making straight A's.  She did this while also working 40-50 hours a week at night, in a factory.  After her sophomore year, she did a lot of research as to what college or universities would help give her an edge in the career path she was heading down.  She applied to University of Denver, and was accepted. Not knowing a single sole, she packed her suitcase, hopped a plane, and started a new life.  My daughter graduated with her undergrad last June.  Now, she's still at DU as a grad student.  Not only is she a grad student in economics, with focuses on both international and developmental economics, but she's also a teaching assistant for the econ department which helps her with her grad school tuition.  In addition to this, she also is a tutor for the student athlete department and the student disability department.  Nikki also does private tutoring, on the side.  To say that I'm proud of her hard work, her ethics, and her dedication is an understatement. 

With all I've personally been going through lately, Nikki sent me an email.  I want to quote something from that email.  She said: " In my personal statement I mention that while I did not grow up in a family that had very much money, in fact we had no money, you and dad always told me that I could be anything I wanted to be as long as I worked hard enough. ".  This brought a mama to tears.  To know that she was listening all the times we told her that.  To know, that is what gave her the inspiration to break the cycle of poverty.  If I could help to instill these qualities in my daughter, then how can I not live by this rule myself?  I must start practicing what I preach. 

With all this said, I must give credit to my daughter for inspiring me to start this mission of mine.  This mission of educating the public on chronic pain and invisible illnesses.  If not for Nikki, I honestly don't think I'd have the guts; the self-esteem, to move forward and pursue this.  Because of Nikki though,  I've found the contact information for the first place I'm going to contact in regards to trying to book a seminar.  It's a nearby university that has a medical school.  I'm going to contact the medical school, and the Student Life department of the campus.  I'm hoping that one or both, will give me a booking.  I'm also going to try another nearby university too, that doesn't have a medical school.  I'm sure there are many students, and faculty alike, that suffer from chronic pain and/or invisible illnesses.  I'm confident that I can provide a much needed service to many out there.  I'm nervous about finally taking this step, but I can also say that I'm excited too.  This may very well be the beginning of a brand new career for me.

Sunday, May 6, 2012

I Demand To Be Heard



My illness (all of them) may be invisible, but my voice isn't!   May is Fibromyalgia Awareness Month, along with several other neuro-immune disorders. What better month for me to start working hard to break into public speaking? This week I'm going to start contacting groups, organizations, universities, etc. to introduce myself, my mission, and to try and book a seminar. It'll never happen unless I make it happen. If you know of a church, organization, university, medical group, etc. that may be able to utilize my service, please either give me their contact information, or give them mine. My seminar will be "Living With Chronic Pain/Invisible Illness - A Patient's View".  Let's work together and try to educate as many people, med students, lawyers, politicians, researchers, etc that we can! Let's take a stand and DEMAND attention!



May 11th (1 day before the official Fibro Awareness DAY) will be only 3 months that The FibroFrog Blog and FB Fan Page have been in operation. In that short time, we've already reached a Google Page Rank of 2 (which is GREAT for this short of a time period), my Klout Score has Sky Rocketed to a 60, and we're at almost 1200 FB Fans. I've had several mentions and DM's on Twitter. Several blog posts/articles have been featured in many online newspapers, as well. I feel that's phenominal, and proves that there are MANY of us out there, and many "interested" people. I'm passionate to educate on this subject, and feel that public speaking and seminars on this, is what I'm supposed to do. I feel like this is the reason I got sick in the 1st place.  I'm asking all of YOU to be my personal agents and help me be heard!  Spread the word about our illness, about me, and about my seminar.  Let's let it be known that we demand acknowledgement, research and CURE!

Saturday, May 5, 2012

...And Now I Know



So now I understand why STBX is being so mean this week...mean enough to not even pick up my meds for me.  He IS cheating on me.  Despite me outright asking him several times, and him swearing "No Amy, I'm not seeing anyone.  I have NO desire to see anyone.  I don't want sex with anyone.  If I want that I'll just come to you because we ARE married and there's nothing wrong with that, is there?  We're separated, so I have NO reason to lie to you about any of this".  I thought of a LOT wrong with that, btw...but won't go into it here.   Anyway, he's with someone.  His old highschool girlfriend has a photo of him & her with their heads together, as her facebook profile pic.  Maybe the warning sign I have above, should also come with a warning to be careful, or else facebook may lead to you being busted in an adultrious affair.  :/

I have sat here and cried.  I've sobbed.  I've wondered why "me" about a lot of things.  Why am I so sick?  Why can't I have a pretty face and a nice body?  Why am I not good enough for him?  Why am I not worthy of the truth?  Why is it that he's the one who doesn't put me or his kids first, is a liar and a jerk, yet he can run out and find someone new right away, while I'm the one sitting here alone and probably will be for the rest of my life?  Why am I the one to always feel both physical and emotional pain?  Why don't I deserve to be happy?  Why don't I deserve to have someone love me, just as strongly as the love I have to give? 

That was a lot of "why's" and a lot of "I's", wasn't it?  I guess that makes me look an sound kind of selfish right now, but I can't help it.  I'm beyond devestated.  I guess I was living in a dream state, hoping he'd come to his senses soon and tell me what a jerk he's been and that he does love me afterall.  Now I know better.  I'm mourning the loss of a life I thought I'd have, and the things I thought I'd do in my future. I'm doing it all while sitting hunched over my desk, in so much physical pain that it's impossible for me to sit straight today.  My head is killing me.  My arms and hands hurt to type.  My legs are aching.  Times like this makes me examine the "What have I done in my life to deserve this kind of emotional and physical pain?".  What have I done so bad?  I love people in my life with every ounce of me.  I'm an extremely compassionate person.  I always do anything I can to help someone if they need help with something.  Older people, children, and animals bring me great joy.  I honestly care and worry about friends and family.  If I was rich I'd donate tons of money to pediatric cancer research, as well as research for neuro-immune disorders/chronic pain/invisible illness.  I've never felt the need to be "rich".  I'm so happy with the most simple things in life.  If I could have enough money to buy plenty of food, pay my bills on time without having  to worry & stress about it, buy myself and my daughter new clothes when needed, be able to take 1 week long vacation each year, and have a little nest egg of a few thousand in the bank for emergencies like car or appliance repairs/replacements, I'd be the happiest person in the world.  Even before STBX left me April 8, when he'd tell me to buy something for myself I very rarely did.  Because MY joy was instead buying for him...or my kids...or my stepgranddaughter..or my parents.  MY joy came from being able to do little things for those I love, and seeing the joy on their faces when I did so.  I don't know, I just don't see where I'm "that" bad of a person, to deserve this crap sandwich that life has given me.  That's just how I feel too.  I feel like I walked into a restaurant expecting a full buffet, for the waiter to come hand me a crap sandwich instead.

I  need to pull myself out of this.  I've been hurt many times over the years, and I've always came out stronger for it.  I really don't see that happening this time.   This time, I don't have a clue how to become stronger for this.  I need to put on my big girl panties, stop crying, stop feeling sorry for myself, STOP LOVING HIM, figure out a way to provide for my daughter and myself.  I really truly felt that the reason I got sick was because God wanted me to spread the word.  To speak publicly for awareness and advocacy on chronic pain/invisible illness.  I truly felt that God would open the doors and make it possible for me to launch a career in that business.  I just can't tell you the overwhelming feeling I have about it, and when I'd pray about it.  I haven't hit any offers to do this yet, but I'll be totally honest in that I haven't totally read and researched how to break into it yet either.  -So maybe that's what I need to do?  All I want is to spread TRUE and CORRECT information about this to the public, to doctors (med students), to researchers, etc, and make enough money at it, to provide a comfortable income for my daughter and myself.  If anyone has any leads or suggestions at all, I'm all ears.