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Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts

Monday, May 18, 2015

My Interview About Having Fibro

**** Edited - I'm going to have to leave you with just Part II of the interview, as the file for Part I is too large and I don't know how to break it down into smaller segments.  If anyone would like to listen to Part I as well, contact me via the feedback form and I'll be happy to email it to you. ****



I was contacted by a very nice fellow named Harry Quinn Schone.  He's a PhD student at University College London.  His  thesis concerns philosophical conceptions and classifications of disease.  He's particulary interested in Fibromyalgia.  

Unfortunately it was a bad fibro fog day for me, as is evidenced in the interview.  
At first, I thought I sounded like a very niave person with all of my "umms", but then I decided it is what it is when one has fibro. There's two parts to the interview so when you leave off with the first recording, play the next one.





I feel that the questions and answers contained in this interview is very important to help spread awareness so please feel free to share this post across your social media sites.



Tuesday, March 10, 2015

Gettin' Muddy To Make Fibro Visible

I'm excited to announce that I just submitted a request for approval to the National Fibromyalgia and Chronic Pain Association to host an awareness and fundraising event for Fibromyalgia Awareness Day!  As most reading this post already know, Fibromyalgia Awareness Day is world-wide, and is May 12th.  Since that falls on a Tuesday this year, the event will take place on Saturday May 9th with the donation to the National Fibromyalgia and Chronic Pain Association taking place on May 12th.


Since our illness is an invisible illness, Backwoods Boggers has graciously agreed to allow me to host this event at their facility.  We're going to be "Gettin' Muddy To Make Fibro Visible"!  For those that enjoy mudding in their trucks, Jeeps, four-wheelers, etc. they'll enjoy a day playing in the mud with their toys.  For those of us (like me for instance lol) that can't physically tolerate that kind of activity, we'll bring a lawnchair and watch the fun!  There will be a special time for us watchers to all hold hands and walk through a mud pit, so that we too can get muddy to be "seen"!  

I'm hoping there will be a live band performing.  There will be 50/50 drawings, t-shirt sales, concessions, and I'm going to try to put together a silent auction.  I really hope that my local tv stations and newspapers will jump on board and cover the event.  Most importantly, we'll have awareness.

I really hope the event will be approved, because I'm super excited about this!  Anything I can do to raise awareness, and to raise funds for further research, I'm all about!  I'll keep you all updated on the progression of the event.  Let's stop being invisble, and make ourselves seen!


Saturday, June 28, 2014

Fibro T-Shirt

I've designed a t-shirt. If you'd like one, they're $15 including shipping. You can order by going HERE  I've also designed one for the men with Fibro out there!




Sunday, December 2, 2012

EVERY Day Should Be An Awareness Day


As I sit here with a wet, gooey feeling on my mid-back from my pain patch, I started thinking about my personal facebook profile picture.  It's one of the "May 12 Fibromyalgia Awareness" photos that go around. Maybe I'm just grumpy tonight from being so tired (I couldn't fall asleep Friday night until after 7am Saturday morning).  Maybe it's because my arms, neck, and shoulders are aching just with minor typing tonight.  Probably  Possibly all of the above, but regardless it struck a nerve gave me pause for thought.  We're supposed to create enough awareness yeah, because that's a real possibility to do any good or bring about changes by making people "aware" one day out of the year?

I'm sorry, but it kind of makes me want to scream and cry, and kick, and throw myself on the ground in true temper tantrum fashion when I sit and really think about that tonight.  Before starting this post, even though I knew the answer, I still went to page after page googling "what is" ....Fibromyalgia, Lupus, RA, Ankylosing Spondylitis, Osteo Arthritis, CFS/ME, etc.  Why would I do this besides being completely crazy?  Just to look at what I already know.  "Although there is no cure at this time ....."

No cure "at this time".  Does that mean that there will be a cure in the future?  Will it be during my lifetime?  Well, I'll tell you my honest opinion.  Although I'm hopeful, realistically I really don't think there will be a cure in my lifetime.  I'm praying that a cure will be found during my daughter's lifetime.  The reason I'm not hopeful, is because there isn't enough advocacy.  There isn't enough awareness.  If you've been around my blog for awhile, you know that one of my key phrases is "without education there won't be change".

What do I mean by change?  You could say that I mean it in the same way as awareness.  My entire mission statement for The Fibro Frog could be summed up by the words on one of the awareness photos I made up.  You'll see it below:

I just think it's so silly to expect people, as in a lot of people, to become aware of how painful, debilitating, and real these conditions are by having separate one day awareness dates throughout the year.  According to the U.S. Census Bureau, as of July 2011, there's 311, 591,917 people in the United States.  Out of over 3 hundred MILLION people approximately 6 million people have Fibromyalgia, and all of the chronic pain illnesses together tally around 116 million people, that still leaves 195,591,917 people who doesn't have a clue what it really feels like to live with an illness that causes chronic pain.  You'll find the census bureau information that I used for this post, by clicking HERE.  That still leaves one heck of a lot of people that doesn't have any clue in the world how miserable our lives truly are have any idea how hard our day to day lives really are.

195,591,917 people that by no fault of their own, just can't grasp the type of pain we live with.  195,591,917 people that are still left to believe that the pain is "all in our heads", or that "Gee, my back, feet, and legs hurt after work so I do know what these people are going through and it isn't that bad.  They're obviously attention seekers".  We can't be mad at people for thinking these things.  As angry as I start to feel every time I read or hear of someone saying that Fibromyalgia isn't real, I have to calm myself down because it isn't there fault.  They truly have no idea of the scope of pain and fatigue that we endure every single day of our lives.  That's my fault.  Our fault.  

Some of you are probably starting to get completely a little miffed at me right now for putting the blame on us, aren't you.  Seriously though, unless we can make these people understand, they will never know what a day in our lives is truly like.  How do we do that?  By educating them.  By talking to them. By showing them proof from studies that these illnesses are real.  By giving them analogies of things that they can relate to.  For instance, using the analogy of when they've had the flu.  That really is one of the truest analogies out there.  



How can you start educating people?  Simply post the truth about how you feel on your face book page.  By writing and sending a bulk email with info, examples, study and research links in it.  By spreading the message about my "Living With Chronic Pain - A Patient's View" seminar.  By talking to your community leaders, pastors, lawmakers, doctors, clinics, college campuses about booking my seminar.  If people doesn't understand what it's truly like to live like this, then it's up to us to help them to understand.  If we ever hope to have a cure found (for whatever chronic pain/fatigue illness you may have), it's going to take pressure from multiple people to demand further research.  I go over the statistics of how much government money goes towards research for us, compared to the amount of government money that goes towards research other illnesses.  Now, I'm not being crass or cold hearted.  I've had people I love dearly that's passed away due to some of these other illnesses, but the distortion in the amount of research funds for these other illnesses, compared to what we get for fibromyalgia, was staggering to me.  I had someone say to me once "Well at least you won't die from what you have, like a person with cancer might".  Again, I'm not crass or cold hearted, I'm just throwing my honest opinion out there.  I'd much rather be diagnosed with some sort of heart condition, because they have treatments that can be tried ...medicine, surgeries, etc. that can possibly lead to the person being cured.  I've long and hard with this next one, and I still feel the same way; I'd rather be diagnosed with cancer.  Again, there's treatments and therapies and surgeries that can be tried an a lot of the time the person is cured.  Yes, a person goes through pain, tremendous pain, and sickness with cancer treatment. Still though, they have the hope that they'll achieve remission and be cured someday.  Did you know that in most of the auto-immune illnesses, a lot of people take some of the very same immune suppressants that is given to people with cancer?  It's true.  Yet even though they take meds and have infusions of the same meds cancer patients have, they don't have any hope that they'll be cured.  They live with the knowledge that they're going to live in perpetual pain every single day of their lives until they die.  Not only the pain, but the fatigue, the headaches, the nausea and sickness and depression that are co-morbidities of  Fibro, or Lupus, or RA, etc.  Co-morbidities such as ulcerative colitis, IBS, chrones disease, migraines, and on and on and on.  Real conditions that hurt.  Real conditions that make you sick.  Again, for me, I'd much rather have a diagnosis of something that could be fatal because not only is there hope of being cured, but regardless, I'd know one way or another that my pain would come to an end.  On days where my pain is incredibly bad and I've been stuck in a flare for days or weeks, I sit and think about it and I'd rather know I was going to die, then to know that I have somewhere around 40 more years to live in pain, sickness, and agony.  It feels as if I've been sentenced to a life of living in a slow, perpetual hell. 


The only hope I have; the only hope we have, is that we bring about awareness to enough people that understands what a crap sandwich we've been dealt in our lives.  Enough people that's willing to help us advocate and put pressure on lawmakers and congressmen to push for more funding for more research. I really hope that none of my opinions in this post have offended anyone as that wasn't my intent.  The statements and opinions that I've expressed are solely mine.  Because I feel this way, doesn't mean that someone else with the same condition as I have, feels this way too.  As my last blog post talked about though, the number one cause of death for people with fibromyalgia, is suicide.  It's just so daunting knowing that you don't even have a chance to be healthy again.  Knowing that you'll spend every day of the rest of your life sick, hurting, and depressed. I've always been honest with all of you on this blog, and I always will be. Some people may find that honesty offensive, and I realize this, but that's who I am. If I give people nothing else, I at least give them my honest thoughts and opinions.  All of this to say please, please don't just try to bring awareness about on May 12th of every year.  Advocate for awareness every day of every year.





Saturday, September 22, 2012

Education Is The Key


This represents me.  I will never stop advocating for research on fibromyalgia and other chronic pain conditions.  I will never stop trying to educate those who doesn't understand chronic pain conditions.  I will never stop trying to book my seminar, so that I can educate as many people as possible about the hell that we live with every day of our lives.  This is also me because this photo represents the beauty that I can capture with my camera.  Yes, I took this picture and many others.  I used to go out and take photos several times a week.  I was a freelance photographer.  I still take photos but nearly as often as I used to.  Now, when I do take them I can only do a few at a time because the weight of holding the camera up kills my neck and my arms.  Standing to take the photos, puts spasms in my back.  I've had times that I actually cry, because I want to take photos but my illness won't allow me to.  This photo, along with my own quote is what keeps me going.  We need to educate people about our lives living with this monster.  We need to demand more funding for research.  We have to have hope and  carry on.  So that we can someday hopefully get our lives back, and so I can start doing the one thing that brings me intense happiness and pleasure ....taking more photos of more sunsets reflecting off the water.  Serene tranquility.  Peacefulness.  Self worth.  Happiness.  Our normalcy and lives.  To get these qualities and more back, we have to educate.  If anyone has a contact that may be interested in booking my chronic pain seminar, please pass along my contact info.  If anyone knows of any businesses, groups, or even just regular people like you & I that would donate to my seminar fund, please pass this blog address on to them.  The donate button for my Go Fund Me account is on the right hand side of this blog, close to the top.  Even $1 adds up if every one contributes.  It isn't the amount of money donated, it's the volume of people who donate. Help me to help all of us. Please share this photo by sharing this blog post.  The more people who see this photo, the more awareness we're bringing to the issue.  Remember, education is key.

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.


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!

Tuesday, March 27, 2012

Accommodations In The Workplace For Fibromyalgia


Fibromyalgia is hard on someone even if they don't work outside of the home.  For those who do work outside of the home, they may feel that managing their symptoms while in the workplace is impossible.  There are quite a few accommodations that can be made though, to help make your work environment easier to be at.  I found a list at WebMD.  I'm going to highlight some important ones in this post, but you can see the full list by clicking the link.

The first thing you should do, is talk to your employer and describe what having fibromyalgia is like for you.  Explain to your boss how you will have good days, and you will have bad days.  See if there's any way that if you're having a bad day, that you can either take some work home with you to reduce your day in the office, or if it's possible for you to work from home that day.  Explain that even being able to take short breaks, alternating between sitting and standing, would be helpful to you.

What to do when Fibro Fog set's in?  Explain what fibro fog is.  Explain that it's a symptom of your fibromyalgia.  Ask that clear, simple directions be written down for you to refer to.  Use schedules and organizers, to help you keep track of what you need to do, and of deadlines.  When using your scheduler or organizer, priortize your assignments so that you make sure you get the most important things completed first.  Try to work in an area that has minimal distractions, so that you can concentrate easier.

Providing written instructions, and reducing your distractions should also help to aleviate depression, stress and/or anxiety that you may be feeling.  Your boss should allow for time off for counseling if needed, and should provide sensitivity training to co-workers.  He or she should also give you a clear outline of deadlines and consequences.  You should be allowed breaks for stress management techniques, if you're feeling especially depressed, stressed or anxious that day.  Also check with your HR department to see what employee assistance and counseling opportunities the company provides to it's employees. 

Talk to your boss, about developing an ergonomic work station.  This can help to relieve pain and fatigue by making it easier for you to be at your workstation.  Having a company that's willing to allow a flexible work schedule and flexible use of leave time can be extremely helpful for days and times that you feel especially tired or weak.  Reducing or eliminating the amount of physical exertion you have to do at work, is also especially helpful for days you're tired and/or weak. 

If you suffer from migraine headaches, talk to your boss about providing air purification devices, and eliminating flourescent lighting and providing task lighting.  Again, a flexible work schedule that allows you to work from home is especially helpful on days you're suffering from a migraine or a sleepless night.  Many of the other suggestions above, also will be helpful on these days. 

I know that even with the best of accommodations and the most understanding boss in the world, there still may be days that you just feel it's impossible to go into work.  I completely understand that.  As a matter of fact, I've been in such a pain flare for months now, that I'm sure if I worked outside the home I'd have been fired by now.  All a person can do, is to try and do their best.  This is one of the reasons why awareness of fibromyalgia is so important.  If people do not really know what it is, then how can we expect them to really understand.  Awareness and advocacy of fibromyalgia and all of the other chronic pain and invisible illnesses will be a passion of mine, until the day I die.  I'll do everything I can to get the word out there.  To try and make people understand that this is a "real" syndrome.  The pain is real, and so are the ramifications.

Monday, March 26, 2012

My 16yr Old Daughter, Fight's Like A Girl

I haven't really talked about any of my children on this blog yet, so I'm going to take today to introduce you to my youngest child, Courtney.  Courtney is 16 years old, and at the age of 15yrs 1mo old, she was diagnosed with PCOS.  PCOS (Poly Cystic Overy Syndrome) is another one of our wonderful invisible illness'.  I do believe that Courtney also suffers from Fibromyalgia, and I'm getting ready to start my research of trying to find a good rheumatologist that treats children.

Shortly before Courtney (who prefer's to be called Court) turned 15, she started getting sick.  She started having horrible stomach pain.  She was tired and lethargic.  Her muscles felt weak and ached, and she'd get muscle twitches and charlie horses.  She had constant headaches, and sometimes felt dizzy.  She was nauseous a lot of the time, and lost her appetite.  She had (has) trouble going to sleep at night, and became depressed. 

Our adventure led us to the family doctor, who ran test after test.  He seriously ran almost every test imaginable.  Even ones where she had to drink contast that made her throw up.  She had everything from blood tests, to urine tests, to imaging and ultra sounds.  The final conclusion after months of testing, was that she has PCOS.  The ultra sound showing several pearl-like strands of cysts on both ovaries was the final piece of the puzzle to her diagnoses.  Like I said above, since I've been diagnosed with Fibromyalgia and learned about this beast, I fully believe her to also have Fibromyalgia in addition to the PCOS.  She also was diagnosed as having depression.  -Yet another invisible illness to deal with.

I was searching for a photo of Court, that I had taken of her in the hospital one time after diagnoses, but of course I'm not seeing it in my hundreds of photos that I have on my computer.  One of her cysts became very large, and ruptured.  She was in so much pain that she was laying curled up on the bathroom floor, crying and asking me if she was going to die.  She was white as a sheet. Talk about breaking a mom's heart.  After she'd been at the hospital for awhile, all of the fluid from the ruptured cyst moved up into her chest cavity, causing excruitiating pain in her chest.  The poor kid was on I.V. morphine for about 4 hours. 

The people who have heard of PCOS without being afflicted with this condition themselves, say "Oh yeah, I've heard of that.  It just causes some cysts on the ovaries.".  That statement can be infuriating to a person who suffers with PCOS.  It's so much more then that.  In fact, a lot of people who have PCOS doesn't even have ovarian cysts.  The name can be so misleading. There's a gauntlet of symptoms and a person may suffer from one symptom, to many or all of the symptoms.  Unfortunately for Courtney, she suffers from a massive list of them.

Everyone has heard of diabetes, right?  Everyone has heard of heart disease, for sure.  Most everyone has heard of endrometrial cancer.  Everyone has heard of depression. So why then, hasn't everyone heard of PCOS?  PCOS can cause any one of these above conditions.  PCOS is the number one leading cause of female infertility in the U.S.  It can cause cysts, but as you can see, it also is a whole lot more then that.  Babies born to women with PCOS are even at a higher risk of NICU stays, then babies born to mothers without PCOS. 

My daughter, who should be enjoying the best years of her life in high school right now, is now homeschooled.  She takes her classes through our school district, in an online format.  She's a beautiful singer, who was part of our high school show choir.  Unfortunately, our director didn't know a thing about PCOS and apparantely wasn't willing to try to learn anything about it.  Therefore, if Court wasn't quite as peppy as she should be at a practice, or if she was having a really bad day and just couldn't make it to practice that night, she was yelled at infront of the whole group for it.  Courtney finally had enough, and had to give up her one real joy at the end of the 1st semester this year.  Here's a photo of her doing one of her solo's last year:


She loved the dinner theatre they held, and was so excited to get out there and perform for the crowd.  Here she is before she took the stage, along with my parents:



PCOS may have put a few road blocks in Courtney's path, but it hasn't stolen her spirit or personality.  She's still the same beautiful, goofy teen-aged girl that loves spending time with her friends. 

My oldest son, Cody, is an amateur MMA fighter, with a 7-state ranking of 3rd out of all of seven states. September is the national awareness month for PCOS, and we're hoping that with Cody's help we'll be able to get a huge all female fight scheduled, with the name of the fight being called "Fight Like A Girl", to raise awareness of PCOS and to raise funds for research.  Here's Cody at one of his fights:
Cody is the one on top, winning
  See, research is really needed for PCOS.  There isn't a cure.  There isn't even a treatment plan really.  Some doctor's throw some birth control pills at you to try and help with the symptoms.  Some doctor's throw metformin pills at you to try and help with the symptoms.  Depression meds may be prescribed.  That's about it.  If money can be raised for depression, heart disease, diabetes and cancer then why can't it be raised for PCOS research?  Again, PCOS can cause any or all of these complications.  I bought a new teal colored shirt a few weeks ago, and today I'm wearing teal for my daughter.  I'll leave you with a very poor quality video of Courtney and the show choir group doing the opening song of the dinner theatre, in case you'd like to watch some real life "Glee" today. They're doing the song "Don't Stop Believing".  That's a motto that Court and I both live by.  Please be patient.  The lights finally come on at the :55 mark, and the camera zooms in on Court around the 1:07 mark.