Create Awareness and Show Your Support

For the next two weeks you can order a t-shirt, long sleeved tee, or a hoodie.  Multiple colors to choose from!  Help create awareness everywhere you go when wearing one of these.  Without more education about our illness, and more advocating for further research, a cure will never be found.  How cool would it be if someone stopped you when wearing one of these, and asked you "Exactly what IS Fibromyalgia?".   ORDER YOURS BY CLICKING HERE

Random Thoughts

So many times in the past, I've found myself wondering if I did something horrible to deserve to live with the health issues I have.  I wondered if it was some sort of punishment.  Karma.  Tonight, as I sit here with a cold or the flu that's wrecking havic on my respitory system from my COPD, my mind wanders down that path again.  

I know that's a silly train of thought.  I know what kind of person I am, and what kind of person I've always been.  I've always had a good, loving heart.  Of course I have some bad qualities, and I'm certainly not a Saint, ....but overall I'm a good person.  I've never done anything bad enough to deserve to be sitting here gasping for air.  To live in pain every day of my life.  To never have any energy.

All of that thinking leads me in circles.  Circle after circle until my brain is dizzy and spinning.  Question after question pops into my head.  Why do good people die young?  Why do some really bad people get away with murder (literally) ...or rape  ...or child abuse.  They go unpunished sometimes by the legal system.  They also sometimes go unpunished by karma.  They have their health.  They a lot of times are wealthy.  What in the world could I have done to deserve a life like this?  Is there really such a thing as karma?  I don't think there's really such a thing as karma because if there is, it isn't making much sense.  

Is it all just random luck?  I've always heard that a person makes their own luck.  I'm not sure I believe that.  Sure, a person can do things in their lives to try and help give them an advantage ...but to truly make your own luck?  I don't know.  

I end up going back to punishment again.  Maybe, it's some sort of punishment for not taking advantage of all the opportunities in life that had come my way. Maybe it really is karma.  Karma saying "You were just slumping through life instead of doing what you were meant to do, so it doesn't really matter if you live life or not".  

Ever since I was a small child, I had wanted to be a doctor.  At the age of 11, my walls were plastered with posters of the human body.  Anatomy posters.  Drug rep posters.  Any poster that my doctor had graciously given to me, that he'd received from reps.  He knew my desire to one day go to medical school.

At age 12, my doctor asked me if I'd like to start coming in on Saturdays and shadowing him, to feed my never ending desire for medical information.  I was ecstatic!  Every Saturday from 9am-12pm I'd follow him around like I was really something important, and I'd take in his every move and every word to patients.  I can not begin to tell you my excitement when one day he asked if I'd like to assist him bereaving some skin from a burn on someone's hand (after getting their permission of course).  

Then a few years later I turned into a know-it-all-snot-nosed-teenager-who-thought-she-was-in-love.  At the age of 17, I informed my parents that I wanted to take senior english and senior government through independent studies so that I could graduate that year ...my junior year of high school.  I told them I wanted to graduate a year early, and get married in June right after graduation.  I had plenty of credits to graduate a year early, I just needed to have the mandatory english and government credits to do it.  

My parents about had a heart attack when I sprung this on them!  In my typical defiant teenager way, the tears started spraying and I started yelling at them that if they wouldn't sign for me to get married in June, that 5 months later when I turned 18 my boyfriend and I would just run away and get married.  Why my parents gave in to that tirade, I still don't know.  They finally agreed.  

Boy were we stupid.  He was a senior (where I was a junior) and he'd been accepted into an amazing college where he was going to major in engineering.  I had wanted to go to college for pre-med ..then eventually med school.  Instead, without a pregnancy even involved, we opted to throw that away in the name of love, and marry so very young.  Five months later, on my 18th birthday exactly, a doctor told me I was pregnant.  There went any dreams of college for either of us.

I worked hard throughout my life, but I was never very successful at anything. Without a proper secondary education I was at a huge disadvantage.  I worked one minimum wage job after another.  My marriage lasted for about 5 years, and 2 kids.  

That leads us to today.  I'm sitting home alone with my body killing me, coughing a lung up, running a fever, gasping for air, writing to you, and wondering why I've been dealt a crap sandwich for my health.  I'm never going to get the answers to my questions.  I'm never going to know why I have to live my life sick and in pain.  The only thing I *can* do, is keep smiling.  Keep hoping.  Keep believing.  Keep believing and hoping, that one day there will be a treatment plan.  

Hold on to hope everyone, and always try to smile.

   

Credibility

Credibility.  It's such a simple looking and sounding word.  "The quality of being believable or worthy of trust."  Even the definition sounds simple, doesn't it?  It's so much more than that, though.  It's really so in depth, that it's mind boggling.  

How do you decide if something, or someone, is credible?  Does something have to be tangible? Do you have to be able to see it or feel it, to believe in it and it's credibility?  What about God? Or religion in general?  You can't see God, but a lot of people believe in Him.  A lot of people believe in the bible.  What lends credibility to the bible, for people to believe in it?  They just do, right?

What about the credibility of people?  Or of illnesses?  Or of people who have illnesses?  What makes their feelings, their symptoms, real and credible?  Many people will answer that question with "Well the doctor saying so makes it real and credible.  Duh.  The results from their tests make it real.  What a dumb question!".  No, not really. 

Let's pretend we have four people standing side by side.  They're lined up on a stage, in front of a large audience of people.   First, we have a person who has cancer.  They have patchy hair on their head, and they're pale and have dark circles around their eyes.  They look at you and say "I don't feel good.  I'm sick to my stomach and my body hurts.  I'm really in a lot of pain today.  I'm just completely exhausted.  I have to go lay down now".  

Next, we have a person who has MS.  They're standing there with a cane.  Their eye is watering.  They say "I'm just coming out of a flare.  My face is numb, which is making my eye water because it feels funny to it.  I'm weak, and have to use my cane right now to walk.  I'm just so tired".  

The third person says "I have fibromyalgia.  My body feels like I've been beat with a baseball bat.  It hurts to turn my head, or raise my arms.  My legs ache and my back, hips, and legs hurt so bad that I can barely take a step today.  I woke up feeling just as exhausted as when I went to bed last night.  But of course, I couldn't even fall asleep until close to 5am due to the pain and insomnia that fibro causes. I don't have an appetite, and when I try to eat, I feel nauseous".  

Lastly, there stands a person who suffers from severe depression.  They say "I feel worthless.  I don't feel like I have anything to live for.  I just want to sleep.  I don't even have an appetite any more. I want to lay down and sleep and never wake up.  I hurt in my heart.  I want to be happy.  I want to go do things and have fun, but I just can't.  I don't want to live like this any more".  

After looking at these four people, and hearing what they have to say, the large audience is asked to vote as to which one of these people is the sickest and to write why they believe the way they do.  What do you think the outcome of this vote would be?  Which person is the sickest?  Which person do people generally feel the most sorry for?

Of course I haven't conducted this experiment.  This is just all personal opinion and perspective from what I've seen and heard in the world of illness. my personal conclusions though, are of course the person who has cancer is the one that's going to get the most votes.  Next, the person who has MS will get the 2nd most votes.  Even though the person who suffers from severe depression may receive comments on the forms such as "It's all in your head." ..."You could be happy if you'd just let yourself be" ...etc, they'd come in as the 3rd sickest in my opinion, and last place would be the person who has fibromyalgia.  The fibro person may garner comments such as "Quit being a hypochondriac" ...."It's all in your head" ...."Your illness isn't that bad" ...."If you were really that sick, you'd be able to tell it just by looking at you" ...."Fibromyalgia isn't even real.  It's just something someone made up to shut up all of the hypochondriac's out there" ...etc.  I could go on, and on with possible & probable comments that those cards would receive.  

My question is, what makes the person who has cancer or MS more crediable as to how they're feeling than the person who has fibromyalgia or depression?  All four of these illnesses are terrible.  All of them are their own form of a living hell.  They're a form of personal torture and take away from a good quality of life.  But why do people sympathize with the one who has cancer and the one who has MS, but doesn't believe the one who has fibromyalgia and the one who has depression?   

Tangible results are why.  Blood tests, xrays, MRI's, CT scans, PET scans, scars from surgery.  All show definitive results that something is wrong inside of the person.  Visual accountability.  They can see with their own eyes, the balding head.  The dark circles.  The scars.  For some reason, in the area concerning a person's health, people are hung up on the tangibles.  If they can't see it, they don't believe it.  In the minds of most people, if it can't be proven, beyond a doubt, then it doesn't exist.  It isn't true.  

Why people can believe in certain things that they can't "see", such as God and the bible, but can't believe in another person when they say how they feel, is beyond me.  It really saddens me and hurts my heart.  Everyone's pain is valid.  Everyone's pain counts.  Everyone who is suffering, no matter from what, deserves to be heard and to be believed.

This is one reason why research for fibromyalgia and other chronic pain conditions is so very important. New research has been pointing us in the right direction as to "proving" fibromyalgia is real, but there's still so much that we need to learn.  To make our illness credible ....to make our voices credible, we need to learn so much more.  When people do not believe us, it makes it so hard to garner the support and funds for further research.  Without that research, we will never be credible.  We're going to have to find the "why" of fibromyalgia, to be believed.  

I spent a few days last week with a person who has MS, and a healthy person, both at the same time.  The healthy person went on and on about how terrible MS is.  How I'm sooooo lucky that I "just" have fibro and not MS or cancer, or something else that's horrible.  Well, you know what?  Having fibro is pretty horrible too in it's own aspect.  It's not much fun to feel like you have a sunburn all the time on your skin.  It's not much fun to feel like you have the flu every single day of your life.  It's not fun to be in a flare where you honest to God feel like someone took a baseball bat and beat the living crap out of you the night before.  I don't like saying "ow" every time I go to stand up, or move my head.  I hate being so exhausted that I sit and expend energy I don't have to spare, crying, yet if I lay down to sleep I just lay there.  Then I toss and turn because if I lay on one side for a bit I start to hurt.  So I say "ouch" as I turn over because it hurts to move my body to turn.  Then I repeat the process a few minutes later.  Over and over for endless hours at a time.  When I wake, I feel just as tired as when I went to bed, because my brain doesn't go into, or stay in, a deep restorative sleep pattern.

When I vocalized that fibro isn't a picnic either, I was met with "Maybe not, but it isn't as bad as what poor S goes through all of the time.  She's been to four different doctors who have all proven that she has MS".  Hmmm.  Really?  I've been to several different doctors too, who all say I have fibromyalgia.  It may be in different ways, but how can you say that what she has affects her worse than what I have?  How can you discount how my body feels?  What makes her more credible than me?  

I felt like a failure, because I just couldn't get her to understand about fibromyalgia.  She just wasn't open to being educated about it.  I had to keep reminding myself, that she doesn't know much about fibro.  She doesn't know what the latest research has shown.  She doesn't hear about fibro in the news, or read about it in the papers.  We in the fibro community haven't made a big enough deal about it, for a long enough period, to demand the media attention that fibro deserves.  You see/read stories all the time, front page news, about someone with cancer.  Or some new research or therapy on the cancer forefront.  You hear/read about MS.  Honestly, how often do we hear/see/read about fibromyalgia?  Not very often.  

As a person who suffers from almost every co-condition of fibro, I feel personally responsible for getting our voices heard.  I feel personally responsible for trying to educate those who doesn't have a clue what fibro really entails.  I also feel responsible for letting every single person out there with fibro know that I'm here for them.  That they aren't alone, and that I believe in them and their symptoms.  I feel like it's up to me, to do my part in trying to educate the media and try to get them to run with the story.  If that doesn't happen, then we in the fibro community will never have the credibilty that we deserve.  Without that credibility, than we'll never garner the support financially for further research to find our why, our how, and our CURE.  If a cure can't be found, then we at least deserve a treatment plan that works universally for all of us and gives us back some normalcy.  We deserve that every bit as much as someone with cancer, or MS, or depression, or Lupus, or any other miserable, lousy disease out there.  We must start demanding the respect and credibility that we rightly deserve.

Online Seminar: Living With Chronic Pain

The flyer didn't show up very well.  The two online sessions that are available are 3pm and 7pm EST, Saturday August 3, 2013.  The cost is $15.  Send payment via paypal to: jaammull@aol.com.  In the message section, please include your name and which session you'll be attending.  Please help spread the message!

Compassion

The definition of compassion, according to the Merriam-Webster Online Dictionary (check it out HERE) is as follows: "sympathetic consciousness of others' distress together with a desire to alleviate it".

Why?  Why ...don't most people care about the level of pain that people with a chronic pain & fatigue illness feel?  Seriously.  People are so busy in their own lives, that they don't stop to really think about us.  If they do, they can't wrap their minds around it.  They think that we're just exaggerating.  Or that we're just lazy.  

Today, I had to have my daughter apply a Lidoderm patch on my lower back.  She also had to apply one to my middle back.  At the same time, I took 800mg of Ibuprofen along with 50mg of Tramadol, and 10mg's of Flexeril.  I still hurt so badly, that I had to go lay down in bed for awhile.  It felt as if I hadn't taken anything at all for the pain.  This is how my life is spent.  Hurting. Trying to alleviate the pain.  Being stuck either in my chair or in my bed.  Sometimes being stuck in a bathtub of hot water for an hour ...adding more straight hot water as it cools off. My entire life is spent like this.  Trying to live, by working around the pain.  Trying to plan activities of daily living, around the pain.  Trying to have some sort of quality of life.  Trying to fight back the depression that one feels, when they have to live their lives like this.  I have "live" in bold face, because if you really think about it, am I honestly "living" when this is my life?  The depression that one feels, knowing that they will have to live every day of the rest of their lives with this kind of pain.  In my case, I could be facing another 30-40 years, of constant pain.  To stop and think about having to feel like this for 30-40 more years seems surreal to me.  It seems undoable to me, quite frankly.

I desperately try to advocate for those with a chronic pain illness.  Not just those with Fibromyalgia like I have, or with RA like two out of three of my doctors believe I have, but for anyone who suffers from any type of chronic pain.  Pain is pain, no matter what the diagnosis is.  I feel compassion for anyone who has to live like I do.  I've always been brutally honest on this blog, and I intend to always be honest even though that isn't always painting a pretty picture.  So in all honesty, I fight so hard for awareness, advocacy, and research because I'm hoping that a breakthrough in research happens in my lifetime.  I'm hoping that by some miracle a cure may be found so I don't have to feel the pain anymore.  I'm hoping that I may regain some sort of quality of life before I die.  

When I've been stuck in the vicious cycle of a flare for awhile, it always runs me down.  It makes me sad, grouchy, depressed, on edge, touchy.  Most of you know that after my husband left me, I sat down and put together a seminar on living with chronic pain.  I've never been one to ask for help or charity.  Heck, when someone even brings me a gift for my birthday or Christmas I'm not sure how to act because even if it's something I absolutely love and I'm happy to get, I'm not used to getting things for myself.  Therefore it makes me feel awkward to accept gifts.  I eventually though, swallowed my pride and made a Go Fund Me account.  As embarrassing as it was for me, I shared the site and asked for donations.  Donations so that I could pay for conference rooms, advertising, and travel expenses to present my seminar.  Not only does the seminar give the person afflicted with a chronic pain illness numerous references, tips, and advice for coping with their pain, but it also gives them resources to share with their family and friends to help them understand what it's like to live every day like this.  It also educates those without a chronic pain illness, what it's like to be "us".  To be a chronic pain sufferer.  The seminar also opens people's eyes to the dismal amount of research that we have in this area, and why it's so important to advocate for more research.  Why we need a cure.

This is my "confused" frog face.  Of course, having fibro fog most of the time lends me to look confused a lot of the time, but tonight I'm putting it on because I just can't understand the lack of compassion.  The lack of compassion there is for those of us who are stuck in a life of hell on earth.  After spending 1/2 of my day in bed due to pain, and the other 1/2 sitting here in pain, I logged onto my email a bit ago.  I had my weekly newsletter from Go Fund Me.  Each week, they send one out telling of the great success stories they've had during the week, with donations.  I usually don't open them, but tonight I did.  I opened the email and the top story headline on it was this: 

The Clint Tarver Campaign Clint Tarver made headlines this week. After the Lansing, MI hot dog vendor had his equipment damage by rowdy protesters, America reacted with a ton of support. $33,461 raised by 1436 people in 2 days $33,461 raised in TWO days, by 1,436 people. Wow.  Tears sprung to my eyes.  That is one hell of a lot of money in only a two day time period.  Now, I am sorry that this hot dog vendor had his equipment damaged.  I'm also happy for him that's he's going to be able to replace his equipment because it was his job.  On the other hand though, I've raised $85 in the past six months by a total of four donors.  Now maybe I'm biased, but I feel that this proved to me how little compassion the general public feels for those of us who suffer with chronic pain & fatigue illnesses.  Someone may say "Yeah, but that was that guys job.  He probably has a family to support".  You know what?"  Presenting this chronic pain seminar is my job and I have a family to support as well.  I have to do something to try and support my daughter and myself.  The level of pain, fatigue, and insomnia that I suffer makes it near impossible for me to work a "real" job.  Believe me, I wish more then anything that I could just go get a job in a factory.  I'd enjoy the face to face interaction with other adults, and I need the money.  I really need the money.  The reality of it is though, it just isn't possible for me.  About 3 years ago I got a factory job through a temp service and I made it through 1/2 of the shift.  After 1/2 of the shift I limped to my car crying from the pain.  After sitting in the car for the 20 minute drive home I could hardly pry myself out of it to walk into my house.  I was so stiff and hurt so bad.  Yet this hot dog vendor obviously can work any job so even though he wanted to be a hot dog vendor, he could've went out and found any other type of job to support himself while building the money up to replace his equipment.  You know that my donation page won't even show up in the site's search results?  You have to have had at least $100 in donations before they'll add you into their search results for the different catagories.  I just don't understand how 1,436 people can be compassionate enough to donate over $33,000 in TWO days to replace hot dog equipment, but can't be passionate enough to give a crap about the pain we're going to be stuck in, until the day we die.  As I have previously blogged, the number one cause of death for those with fibromyalgia is suicide.  As much as I'd like to act shocked and offended over this statistic, I can't.  I can so totally understand the frame of mind these people are in when they commit suicide.  The depression.  The physical pain and mental exhaustion and depression.  Desperation. I "get" it.  I know why they want out.  A person deals with as much as they can, for as long as they can. This is why it's so important to educate as many people in the U.S. as we can, about what our lives are really like.  This is why I feel the desperation to conduct my seminar.  If we want any type of cure in our lifetime, then we need to advocate for a cure.   Days like today and tonight, I feel like just crumbling and forgetting about advocating.  Forget about the blog, and the facebook page.  I feel like I'm putting all of what little energy I have, into fighting an uphill battle and that I'll never reach the top of that mountain.  Every time though, I do keep going.  I always will keep going because if I don't, then who will?  Fighting for education and advocacy is the only thing that spurs me onward and keeps me going.  It's the only thing that gives me hope.  Hope that one day people will feel compassion for "us".  Hope that a cure will be found.  Hope, that someday soon I'll actually have a good quality of life again.  Compassion.  Such a simple word, but also such an important word.

Everything Hurts

Last night was rough pain wise and it's continued through the entire day and night tonight.  I can't hardly move.  When the pain is this bad, it starts to really get me down and make me feel depressed.  Even my head, upper legs, and the back of my arms hurt tonight, in addition to my every day pain of neck, shoulders, knees, lower back, and mid-back.  I'm so sick of hurting all the time.  I just wish that I could look and feel good for one single day ...and when that day arrived have the money to take advantage of it by going shopping, out to eat, then out to a movie or live performance or something.  I want to walk around, and laugh and have fun.  I want to go out and walk through parks, taking nature photos as I go.  I used to do this.  It would hurt me, but it was doable.  Now?  No way.  I used to take my camera pretty much anywhere I went.  Now, not only can't I stop along the side of a road to walk out in the middle of a field to take a photo I may want to take, but I can't even hold the camera up long enough to walk anywhere with it.  Well, I can hold it up, it just causes me extreme pain in my arms, neck and shoulders.  So therefore, I can't still do it.  Not enjoyably anyway.

I can't convey the excitement I'd feel when I would take photos.  The excitement of getting home and downloading them all, to see what natural beauty I had captured at that particular second in the universe.  That nano-second in time that could never, ever be reproduced.  The photo above is one of those nano-seconds that I captured.  The top of the cloud looks as if it's lined with silver.  Rays of golden light opening up out of the cloud and reaching towards the sky.  As if it's a tunnel of light to heaven.  All of the rays of gold to the right side of the photo.  Like rays of golden hope.  Hope, that if I keep talking; that if I keep writing; if I keep advocating for more research, that maybe, just maybe a cure or at least a concrete universal treatment plan may be found.  If not found in time for me to utilize it, then at least in time for my daughter or others younger then me, to take advantage of it.  

It really hurts my heart, that so many people (most people) just doesn't have a clue how bad this pain can be.  I call these people DHAC's, which stands for "doesn't have a clue".  Most DHAC's are well-meaning people and aren't trying to hurt us, or make us mad, they just honestly really DHAC.  I have a DHAC in my life.  She is the sweetest woman in her early 50's and she really cares about me.  She's pretty much the only adult IRL (in real life) friend that I have anymore, and I'm pretty sure I won't even have her for much longer.  At least once every week or two she'll call me up telling me that I need to get myself out of my house.  She'll tell me how I should be going to the gym to do cardio and weight lifting with her.  The best thing that she regurgitates at me at least once a week?  "Well, you know my BFF K. that I've had for 30 years.  She has fibro and she gets around so much better then you do.  You just need to snap out of it.".  OR....she tells me over and over how there's a 60 year old woman who works out at her gym who has Fibromyalgia so if she can do it, then I certainly should be able to do it too.

See, that's the funny thing about Fibromyalgia or Chronic Fatigue Syndrome, arthritis, even auto-immune diseases such as Lupus, RA, etc.  You can line 20 people (or 50, or a 100) up beside each other and you may not hit two people who have the exact same symptoms.  You may not hit two people who are affected the same way.  They'll all have varying degrees of pain.  Some people only have a few of the symptoms of fibro and others may be affected worse by their symptoms and pain levels.  Just as when what people call "the flu" (that is actually an intestinal virus) some people have a bad case of it and some people have a less severe case of it.  Unfortunately, I have a "bad case" of Fibromyalgia.  I have all the symptoms and co-conditions.  I have the acid reflux, I have the IBS, the Fibro Fog & memory loss, the insomnia, and on and on and on.  Does this well-meaning friend honestly think that I like not going out and doing things?  No, I don't.  I despise it.  You can't even begin to understand how bored and lonely and stir crazy I go.  Days like the last few though, I don't really have much of a choice.  I always have to use the chair arms to "push" myself out of my chair and yell "ow".  The last few days it's a double "ow" because the back of my arms hurt so badly too.  

My pain has been so bad for the last two days that I'm really not dealing with it well by tonight.  Not at all.  I'm starting to feel whiny, and I keep blinking back tears.  Just typing these words made me start feeling emotional again and I had to shove the tears away.  I seriously feel as if I'm losing my mind and going mad from the pain.  It isn't like I have a little pain.  I have pain.  -I had four children natural without pain meds.  I know what pain is, and I have real, debilitating, pain.  When I was first trying to come to grips with my illnesses, I kept asking "why me?".  "Why me God?  What have I done to deserve a life filled with pain every single day?".  I always felt that God wanted me to use my sicknesses to help others who are also sick.  I thought he wanted me to educate and advocate to fight for the rights of those of us afflicted.  I felt that he wanted me to bring awareness to the table, to advocate for more research for a cure.  Now?  I'm not so sure.  I feel that if I had been right, that God would've opened the doors for my chronic pain seminars.  Maybe it just isn't the right time yet?  I don't know.  All I do know is that's where my passion lays.  I also know that presenting chronic pain seminars is the only type of work I could possibly do at this point in my life.  Due to the fact that it isn't something I'd be doing every day, along with the fact that they only take a couple of hours, hours that I could alternate standing and sitting as needed while doing it, it's the only way I can fathom to do to support my daughter and myself.  I've always heard the saying "God helps those who help themselves".  I've tried every thing I can think of to try and help myself on opening the doors to public speaking and advocacy and it still hasn't panned out.  My birthday is November 18th, and I've posted everywhere that the only thing I want for my birthday this year, is to have enough money to present at least one chronic pain seminar.  God bless those who've donated to my chronic pain seminar fund on GoFundMe, but I've only raised $75 in the four months that I've been advocating and asking for donations.  -And you guys can't imagine how hard it was for me to make the page and ask in the first place.  I really don't think there's any way for me to hit my birthday goal of having the $75 raised up enough to hold at least one seminar.  I've said before that I'm not looking for a free handout.  I'm looking for people and/or businesses that believe in me and in what I'm trying to do.  I'm looking for the help of getting started.  After the first couple, then the seminars will start paying for themselves.

The grief wheel is a funny thing.  I'm not sure that you ever get out of it.  I'm beginning to think that it's something you just keep going around and around and around on until you die.  Every time I think I've finally come full circle with it, I find myself in the questioning and angry stage again.  Then we start all over.  I'm dizzy and sick of spinning around on this silly wheel.  Enough is enough.  Unfortunately though, since doctors and scientists doesn't have a cure, or even any single medicine that will take away my pain and my fatigue, I'm just stuck here going around and around and around.  No matter how hard I have to fight to believe and have hope, I will.  Hope that a cure will be found.  Hope that research will provide answers so that medicine that works will come to light.  Hope that a door will be opened for me, and my career in advocacy will take off.  I can't lose faith of my hope, because if I do then what will I have left?  

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.