Quality VS Quantity Of Life

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

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

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

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

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

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

Seminar Excitement!

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

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

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

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

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.
 

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!

The Cries Of Chronic Pain

The Cries Of Chronic Pain

I sit and yawn, all night long,
My eyes, they burn like fire.
I can not sleep, for then I weep,
So tired, for sleep I desire.

The aches and pains, my memory games,
The cramps and numbness I feel.
I patiently wait, and try not to hate,
This illness, my fate won't seal.

Sometimes it's cramps, sometimes it's pain,
Sometimes it's memory loss, recalling the words in vein.
Sometimes it's numbness, sometimes it's depression,
Leaving one to feel, that they are to blame.

I do not see your sickness, some may say to me,
You have all your hair, and you're standing here.
Not in a hospital, or in a wheelchair,
Or anything else, that you can't bare.

Don't you see my weariness, and the dark circles around my eyes?
You don't see the tears I cry, or the fear that I won't rise?
The feeling when you look for a word, to find it nowhere around,
Sometimes you feel crazy, and not like you're so sound.

This illness doesn't discriminate, it really doesn't care,
You can be any age, don't think that you're too rare.
It's unrelenting in it's attack, it doesn't care where you're at,
It strikes you like a theif in the night, robbing you of all your delight.

Not enough research, no answers to share,
No cure for this illness, nobody to care.
No magic pill is in our sight, no government grants to make things right,
No big budgets, to forge an attack, no relief  through the night.

Sit and plan your day if you dare, with this illness it will not care,
It will not care, what you want to do.
This illness will try to define who you are, leaving you feel empty,
your heart in a jar, leaving you with feelings that are just untrue.

One by one, we have to fight,
speak our minds, and make things right.
Cry out to one and all, make your voice heard,
Put up a fight, never give up while looking for a knight.

The more that hear, and learn to understand,
invisible illness will lose the upper hand.
Chronic pain, our way of life,
Someday will not, give us strife.

Don't sit silent, in your own pain,
Stand up and demand, the world make a gain.
Gain to understand, this illness and it's desire,
Science needs to learn, how to put out the fire.

The louder we speak, and the straighter we stand,
The better chance we have, to make the demand.
Demand that fibro, and all chronic pain,
Get the funding it deserves, so our lives aren't in vein.

Chronic pain can get us down, make us lose our own self-esteem,
Only if we don't let it, we need to fight like a team.
One voice for all, let it be known,
We won't stop, we'll continue to scream.

Until a cause, and a cure is found,
We won't shut up, or lie on the ground.
We will fight with all we've got, educating the public never to stop,
Not until a cure is found, will they be able to drown out our sound.

Copyright © The Fibro Frog and Amy Mullholand.  Reproductions available with written consent and a linkback to this original copy.

Motivation and Advocacy - Public Speaking

 

 

Friends, paid public speaking is something that I was trying to set myself up to venture into within the next 6 months to a year. The Fibro Frog is gaining exposure and talk in several circles. Life is full of twists and turns though, and due to the turns my life has taken, I need to just jump right in. If you know of a group or organization that would benefit from a motivation and advocacy speaker on living with chronic pain and/or an invisible illness, please pass my name on to them. Several handouts, as well as resources will be included in all seminar's.  As long as they're willing to pay my travel expenses along with my fee, I don't care where in the country they're located.