Sunday, February 24, 2013

The Stronger Cancer Video

I came upon this video on my Facebook.  As I watched it, I had a few different thoughts:

This is so inspiring.  If this woman who has cancer can keep that great big smile on her face, dance around, be lighthearted and even sassy as she thumbs her nose at a killer disease, certainly I can fight fibromyalgia. 

The video made me smile for her but it also made me feel as if I don't do enough to fight, to keep pushing and live the best life I can.  

My Rheumatologist has said that fibromyalgia is very similar to cancer in many ways.  How life altering it is, how many areas of the body it can or will affect.  That it is progressive.  The terrible pain.  Having to take a lot of medications to control symptoms.  

But he said where it differs is that fibromyalgia isn't fatal.  You just wish it would be at times.  With cancer, the patient has two possible outcomes - 1.  A cure.  2.  Death.  Fibromyalgia has neither.  Our only possible outcome is to suffer the rest of our lives.  That sucks pretty bad.  It's why suicide is the number one killer of people with fibromyalgia.  

I'm sure there are cancer patients out there that will die of the disease who would trade places with me in a second just to keep living.  When I feel the worst, I hold tight to that reality.  No matter how bad this disease is, I want to live.  

As I watched the video again, I thought about the ways that I do fight fibromyalgia:

The times that I turn on some Elvis or Eminem, maybe some Beyonce or Alabama Shakes and dance around my house.  Or.. just sit in my desk chair, fingers snapping, head swaying, butt shaking while I sing along.  

I thought about how I make myself get out of bed every morning, no matter how stiff my body is, how much it hurts.  I want to stay in that warm cocoon and drift off again but I don't. 

Doing at least a couple chores around the house each day.  Maybe it's only making my bed - which I never, ever fail to do because it's important to me to accomplish that.  Or doing a load of laundry, cooking a simple meal.  They are small things but they matter. 

Having quality time with my loved ones.  It may be a phone conversation or sitting around the living room talking or watching a movie.  It could be laying on the floor with my grandchildren and playing blocks or reading them a story.  Yes, getting down to the floor and back up is extremely difficult but I manage it.  At least for now.  Chatting with Tony at night and sharing our somethings, year after year.

Laughing as often as I can and learning something new each day.

All of us fight our illness in whatever way we can.  Some days it's easier to do that than others.  There are times when we need to stop pushing quite so hard and rest more.  That balance is harder to navigate than I ever imagined.  

Over all, the video left me feeling inspired.  I realized that each and every one of us have our war and all we can do is take it a battle at a time.  We will win some and lose some.  The most important thing is not being ashamed to lose and to keep getting back up for the next time.  And.. not to compare our journey with others. 

Tuesday, February 19, 2013

What Is Not The Cause Of Fibromyalgia?

It seems like this is a time of change in the world of fibromyalgia.  As I've perused posts over on MDJunction and articles regarding it around the internet, I've noticed a lot of new information.  

One that I would like to share is about a study that was done on the cause of fibromyalgia.  It has long been a theory that it had a trigger - an emotional, mental or physical trauma that became its inception.  This study apparently debunks that; the researchers involved could find no credibility in it.  

That has caused anger and bitterness as a response to the study with the people on  MDJunction.  Some are upset, confused and feel as if  that theory had its validity.  They have their stories of a car accident, a surgery, the loss of a loved one, childhood abuse and felt that was their beginning of fibromyalgia.  It made sense to them.

I think we, as the people who live with this terrible disease, need a reason.  We need to feel like we know why it happened to us.  When you have an illness that defies a root cause, a disease that stumps doctors and the field of medical science at large, it's frustrating as the patient because we want the beginning of the story before we live the chapters.

What this study accomplished was telling us, "no, that's not why you have fibromyalgia."  What has yet to happen is telling us why we do.  What we have to realize is that with each thing taken from the equation, it does get us closer to the possibility of an end truth.  

Once that happens, maybe strides can be taken towards curing it or if not, at least better managing the disease for all of its victims.

I have included the research study URL here if you would like to read it for yourselves:  NfmCPA

Friday, February 15, 2013

Song Of The Day - Jailhouse Rock

I've had the idea of doing a 'song of the day'.  I love music so much that it seems like this would be a fun theme for the occasional blog post.  

Because of my problems with sensory stimuli (click and it will take you to the post where I discuss that further), most often I listen to quiet, soothing music.  I love piano, violin - they are like a caress soothing the pain of fibromyalgia.  Or maybe just soothing my pinball machine brain.  

Now and then though, I want to listen to something that will make me shake my derriere.  A song that gets my fingers snapping, my shoulders swaying and my whole body moving.  

So whether that song of the day be mellow or rock your socks off, I want to share them with you because introducing people to music is an excellent way to leave indelible marks upon them.

This song can make anyone feel better. Nobody did it like Elvis.  I suspect nobody ever will.

Tuesday, February 12, 2013

Morgan Freeman Has Fibromyalgia

I was perusing the blogs that I subscribe to and found something very interesting over on "This Is My Fibro".  Morgan Freeman has fibromyalgia.  To me and I would think to all Fibromites, this is news.  We have precious few big names and faces to put with our disease.  Why does that matter?  Because it gives fibromyalgia the credibility it has lacked for so long.  It gives us, the people who suffer with it, credibility.  

We, as a society, look up to our movie stars and celebrities.  Though I'm sure none of us would wish this upon anyone, when we find out that they can be afflicted just as we are, we somehow feel more normal.  We feel a kinship of a sort with them.  

Beyond that, we hope someone that much in the public eye will raise awareness of the disease, that they will garner money for research.  It gives us hope.. and hope is precious, it is hard to come by when you live with a chronic, debilitating disease.  

Please check out "This Is My Fibro" post at: Morgan Freeman Has Fibromyalgia

The whole interview with Morgan where he mentions fibromyalgia can be found here: Morgan Freeman - Esquire Interview

Friday, February 8, 2013

American Hero

After being woken too early this morning, I staggered into my office and sat down to peruse Facebook.  My sister-in-law had put the memorial/picture that you see here, on her page.  I had heard about this man's death, had seen Yahoo News stories about it but didn't really pay attention.  I clicked on one, scanned through quickly and thought - well that's sad.

I love and respect this sister-in-law a great deal so decided I should look into it further.  If it meant enough to her to post that photo on her Facebook, it meant enough to me to find out more.  I Google'd this man's name and read quite a few articles concerning his life and recent death.  I put his name into Youtube search and watched interviews with him - Time Magazine, Conan, and others. 

I had become fascinated.  This man, who I had quickly read and forgotten about just days earlier, was an American hero.  The kind of hero who had put his life on the line countless times.  Who did everything he could to save not only his fellow soldiers but the innocent citizens and victims in a foreign country.

Watching the interviews, I found him to be modest, unassuming and polite.  He came across as almost shy and nervous but when a tough question was asked, he transformed into something more fierce, rigid and resolute.  He was unapologetic about taking so many lives.  Over 150 confirmed kills - more than any other sniper in U.S. history.  He stated that he has no regrets in killing those people.  You could see in his eyes that he meant it.

I was riveted as I watched him during those interviews.  I studied him.  It's a hobby of mine - being quiet, staying in the shadows so to speak while watching people, studying and learning them.  People are fascinating creatures.  Their ticks and quirks, body language, eyes, facial expressions.  You can learn so much by noticing those things as well as listening to what they're saying. 

So, I watched Chris Kyle closely and what I came away with were all of those things I've already mentioned but also, a deep sadness and pain within his eyes.  He had seen terrible things that you and I cannot begin to imagine.  Those things had become incorporated into who he was as a soldier and a man, a husband and a father. 

He talks about switching between soldier and husband/father.  When he was at war, he was one and when he came home, the others.  I think that people who have gone through things - horrible, tragic things - learn how to do that switching. 

I reference it in my own life as 'flipping the switch'.  For me, it's about choosing in any moment to turn off emotion and having the ability to do that.  I saw that same ability for shifting through personality traits - shy/nervous to hard and unrelenting - while Chris did interviews.  Not everyone can turn off or switch through them as fluidly.  That takes practice and training of oneself over the course of years.

Once home and retired from military service, Chris Kyle became involved in helping soldiers who suffer from PTSD - post traumatic stress disorder.  A year ago, I was diagnosed with PTSD and it came as a shock.  In my mind, only soldiers got that.  Only they had been through something awful enough to have it. 

Over the following months, I would sometimes think about it and try to embrace that diagnosis.  I would call up the memories from my past and think about the disease, fibromyalgia, that I now live with every day. 

My Rheumatologist believes that something so bad can happen in a person's life - physical, mental or emotional - that it somehow 'breaks' a person's brain or central nervous system.  It can cause an actual medical disease like fibromyalgia.  There are other theories about the root cause of it - hereditary, immuno-deficiences, etc. - but that is one hypothesis.

Maybe that Psychologist was right.  Maybe I do have PTSD.  When she gave me the diagnosis, she said, "You remind me of soldiers I've worked with.  You have that same need for rigid control of yourself.  To face things head on without emotion.  Or without ever showing emotion."

The eyes, however, are harder to control than anything else.  The cliche but very true saying is, "the eyes are the windows to the soul."  Somehow, our life experiences, bad and good, are within our gaze for always. 

Those haunted memories of being unable to save more lives, seeing the deaths of his brothers and sisters at arms were in Chris's eyes.  Child abuse, being abandoned by my mother, losing the ability to have more children, my son's illness that by God's mercy did not end in death, and having a terrible disease these last four years are in my eyes.

Sadness, fear, loss, anger and yes, enormous strength can clearly be seen by those that watch people who have been through their own hell.  

Chris Kyle retired from the Navy Seals.  He wrote a best selling novel - American Sniper - with his share of the proceeds going to help families of fallen soldiers.  He created a company to train law enforcement and military personnel.  He was involved in charitable organizations that helped service members transition back into life at home.  One of those organizations help people with PTSD. 

Last week, he and a close friend, another former member of the military took a young soldier, a man with PTSD, to a shooting range as a form of therapy.  Shortly after arriving, that young man fatally shot both Chris and his friend, Chad Littlefield. 

Chris Kyle was many things - a devout christian, a husband, father, brother, son, friend, author and he was a soldier, a sniper in foreign lands with a job to do.  He had a license to kill for his country; to protect its people and freedoms but Chris died at home, trying to be a healer. 

Tuesday, February 5, 2013

I Should Have Eaten The Eggs

IBS & fibromyalgia are partners in crime that hold my body hostage quite often. However, over time, I have figured out a few things that I cannot eat unless I want to be singing all ten minutes of 'Freebird' over and over from the concert stage of my toilet.

Onions, Tomatoes, Pickles, Eggs, Broccoli, Brussel Sprouts, Lettuce, Spicy Foods, Seeds, Nuts.

Tonight, I made everyone steak and eggs. I really wanted some eggs. Nice, yolky eggs with rye bread toast to go along with my juicy steak. But, I abstained. I made pasta with my steak and I was proud of myself.

Less than an hour later, I was held hostage in the bathroom, cramped up and muttering, "if I leave here tomorrow.."

I hate IBS as much as I hate fibromylagia. These illnesses that have a mind of their own and play tricks on us daily. I have no idea what set the IBS off tonight but I should have eaten the eggs. Dammit.

Monday, February 4, 2013

B & Me.

I've had the same best friend since I was a little girl.  I'll call her - 'B'.  Over the years, I've been lucky enough to add several others to this small but precious group of best friends but 'B' will always be the original. We've grown in different directions as adult women.  I have other friends that I would consider closer.  But there is something special about that one friend who shared your childhood with you.
She called me today and we spent over two hours talking - catching up, laughing, offering advice and opinion on issues in one another's lives.  A few times during the conversation, I was reminded in small ways, why we grew in seperate directions.  For little moments, it made me sad.  But I guess part of being forever friends is that you accept it all.   

I feel blessed to have her - there will never be even one thing that I cannot share with her and know she'll love me for it or in spite of it.  We probably won't talk for another six months but when we do again.. it will be like we just hung up the phone from the last time.

Saturday, February 2, 2013

When You Dance, You're Charming

I love music. I mean - love it like it's raspberry cheesecake and red cowboy boots and a library of books all wrapped up into one big present for me.

When I was growing up, music always played in the background. From morning until night - no TV, just music on the radio. We changed the station frequently so what we listened to spanned rock, blues, country and everything in between.

I danced around the house more than I walked. And I sang.. not well, but it never stopped me from swaying, eyes closed while I passionately sang every word into a hair brush or the handle of a broom.

Music was and is, for me, a mood thing. I use it to change my mood, to amplify it, to numb it. Music takes me back to memories of my past. It makes a memory that I'm creating in the moment more vivid. Music is the soundtrack of my life.

In the last year, I've become much more sensitive to sensory stimuli - anything that affects sight, hearing, touch, taste or smell. I know this is a symptom of fibromyalgia. Just like I feel more pain than the normal person, I also smell things differently, see lights more brightly, can taste the smallest nuance of spice in a dish loaded with other ingredients. The sensation of cloth or water against my skin is heightened and I can hear the whisper of a sigh.

The problem with being hyper-aware of sensory stimuli is that it can hurt like physical pain does. That light is too bright and makes my eyes and head ache. That taste or smell is enough to make me retch. The spray of a shower can feel like needles on my skin. And my precious music, if the slightest bit too loud, becomes as grating as nails on a chalkboard.

But every now and then, my broken brain gives me a moment. That perfect moment when I'm the little girl lisping her favorite song, the shy teenager performing a concert while standing on her bed, the mother singing 'Ain't No Mountain High Enough' to her children - all of those memories and moments are right there with me and I'm the 42 year old woman with fibromyalgia; the music is loud, surrounding me and all I feel is joy as I sing along and dance again.