Monday, December 30, 2013


And yet.. I've done it so many times I can recite them from memory, even those horribly long and hard to pronounce names.

Wednesday, December 18, 2013

A Quote For Fibros

This is what I need, including your love.  And I need all of it in great and endless supply.

The Voice

Morgan Freeman has one of those amazing voices that you can hear inside your head when you read a quote by him.  I often times read this one just to hear his calm strength in the words that I try to live by each day.

Monday, December 16, 2013

All I Want Is A Cure.. And Good News

Last year at this time, they found a tumor in an adrenal gland that sits just on top of my right kidney.  The tumor was approximately 2.2 cm big.  When I heard about the discovery of it and the size, I was frightened.  I may have even panicked a little bit over the next few weeks as they scheduled me to see an Endoscopy doctor and to have a lot of urine and blood tests done - most of which had to be sent away to specialized labs.

Being a control freak and dedicated to knowledge of my own health issues, I demanded a print out of every lab test they were sending away.  I wanted to research them at home.  There's a great site that explains lab tests and I'll share it here:

If you have the actual lab test name from a print out, you can find it on the list that site provides and it will educate you about the test, how it's performed and why.  Pretty good information to have, in my opinion.

So, I read up on the tests and waited for results to come back.  When they did, everything was within normal ranges.  That meant that the tumor was not cancerous and just as important, it was not active. Because it rests in one of the adrenal glands, it can cause serious, threatening changes in some of the hormones/body chemicals.  

I saw the doctor, he verified that things looked good and said we could wait a year and check it again just to be sure there were no changes.

Last week, I went through that same battery of tests.  The results from those far-flung labs are just now trickling onto my chart at the clinic.  Of the three tests presently back, two of them have abnormal levels.  I'm worried and trying not to be.  I spent weeks last year agonizing over this, talking about it, analyzing every possible outcome and for what?  I was fine.

So.. why borrow trouble?  I'm smoothing my ruffled feathers down and waiting for a call from the doctor or nurse.  I see him in two weeks but I called and left a message, basically saying - Have you seen the results yet, are they bad, call me!

Time will tell.  In the meantime, I'm saying a little prayer that it's not bad news because at the risk of sounding pitiful, I have enough things wrong with body to deal with.  Please God, give me a pass on this like you did last year.  A Christmas present of an inactive tumor would be great.  Amen.

Thursday, December 12, 2013

How Do You Hide?

I love this time of year, fall has just finished it's pageantry of color and beauty and even the melancholy that comes along with watching nature die is welcome as it makes me feel peaceful and reflective.

And then come Thanksgiving and Christmas, which bring me to the reason for this post:  How do I hide being sick around a lot of people gathered together to celebrate the holidays?

Maybe you're asking yourself - Why hide it?  But I think that most of you won't question it because you know why.  We're proud and stubborn.  We don't want pity.  We want to act and look 'normal'.

I don't want people to notice the dark circles under my eyes so I apply a dab of concealer to camouflage those.  Some blush on my cheeks to bring color to skin that has turned pale.  Mascara to brighten eyes dulled by pain and exhaustion. 

I'm sitting here at my desk, reading what I've written thus far and it strikes me as so plaintive.  A whining tutorial on how to use makeup to turn sick into a happy clown that hides behind the created mask.

I have never wanted to be that person - Poor, pitiful me.  An incessant monologue on having a disease.  But the forums and chronic illness blogs, they are our outlet.  Our place to spill the anger, confusion and sadness so they don't poison us against ever finding hope, happiness and the good days.

It's now days after beginning this post and I return to it too early in the morning but it's silent and I can concentrate on writing.

Back to the subject at hand, how do we hide being sick from extended family & friends?  As mentioned above, we use the magic of makeup - Cover Girl is a fitting name and pun.  We do something with the bedhead mess that is our hair.  And we get the hell out of pajamas and into clothes that we pray won't hurt to wear.

We try to be aware of when we grimace or cringe and stop those reactions to not only our normal pain but the hugs and touches of exuberant, holiday-happy people.  When we need a minute or five to give into the agony or push past exhaustion, we find a  quiet room, usually the bathroom, to be alone and simply breathe.

When sensory stimuli like the noise of too many people packed into a too small space, the smells of food and perfume, blinking Christmas tree lights all become too much, we find the bathroom again and drink in the dark and quiet.  While there, we can reapply lip gloss to add more color to the pallor of our face. When you have a chronic illness or disease, you learn too many ways to hide the ravaging effects of it.

We are hardest on ourselves so we need to realize that being sick doesn't make us less of a person - less needed, less worthwhile, less loveable.  I wrote a blog post months ago about trying not to be our own worst enemy when we're ill.  I believed in it then and I still do and yet, it seems the most instinctive thing to keep all of it some terrible secret.  As if we're guilty of something.  To hide the physical manifestations of our disease so that we can pretend that we're fine.

It is hardest during the holidays.  By the very virtue of what they are and entail, we struggle to keep up.  Keep up with preparations if we even dare host a family event.  If we go to another location to celebrate, we're exhausted by the travel.  We become, quite simply, overwhelmed on every level - physical, mental, emotional.   And inevitably, all of that turns into a flare that we can only conceal from others by escaping the situation entirely.

We go home and climb into bed.  We might cry or we may be too tired to squeeze out the tears so we sleep instead.  Tomorrow is a new day to start over, to eat left over ham and smile over that thoughtful Christmas present from someone who tries to understand - a book, a DVD, warm slippers, brand new, pretty pajamas.

We're a little bit sad but we know we did our best to hide the worst of it.  We joined in and celebrated the holiday the best we could.   We made memories for ourselves and those we love.  In the end, that's all that really matters.  It's worth suffering for.

Tuesday, December 3, 2013

The Brother & I Have Met

I know it's morbid humor but it's also true in my opinion and it makes me laugh.  Laughter gives us strength to keep going.

For My Love


Monday, December 2, 2013

Master Class Monday

One of the things I enjoy doing is roaming around to other Fibro/Chronic illness blogs to see how people are handling the many issues that come along with being sick.  It makes me feel less alone - like there's a community out there, a family of sorts that knows exactly what I'm going through.

Often times, it amazes me how similar our stories are on every level - physical, emotional, mental, financial.  How our families deal with it, our mates and children, parents and siblings.  The symptoms that sometimes make us feel as if we're losing our minds but then we read those other blogs and realize that we're not, it's just another part of having an illness.

Oprah has a show called 'Oprah's Master Class' and the premise is that she has famous people from all areas - music, acting, writing, political, news, etc. - discuss things they've learned about life simply from living it and from those they surround themselves with.  I find it fascinating and if you would like to watch some clips from those episodes, they're on Youtube.

When I find an especially good blog post, I want to link to it here and point our community towards it in case they havn't yet stumbled upon that blog.  Similar to Oprah's master class, I feel like those who live with chronic illness are the true 'masters' within their knowledge of it.  The day to day experience of living with a disease or multiple, concurrent diseases provides us with a level of understanding that not even physicians can claim.

In a perfect world, I would have the energy and be able to commit to doing a once a week segment - Master Class Monday - where I provide a link to a blog post that I've found to be exceptional in its ability to impart wisdom and a better understanding of chronic illness, no matter what its name is.

We all know how hard it is to keep those commitments though, simply by nature of being sick.  I'm going to do my best so please be patient with me if I miss a Monday here and there.  And feel free to email me at if you find a blog post that you think should be a Master class!

With all of that said, here is the blog post that inspired this idea:

One of my favorite blogs to read is written by Chronic Mom.  She has a great way with words and I feel like she invites all of us in to really feel and learn from her experiences.  Today's post was especially good though and I want to share it so click here to read it! 

Tuesday, November 26, 2013

It Feels Like There's A Semi In My Colon

I've found out in the last year that I have chronic diverticulitis.  Basically, worn spots on my large intestine (colon) that bulge out and can collect 'debris' and become infected and inflamed.  Lovely imagery right there.  You're welcome!

They used to think that eating things that would easily get caught in those pouches was the culprit but not anymore.  Yes, they do recommend eating food high in fiber to cleanse the intestines/colon as it passes through but popcorn hulls, nuts and the like are no longer believed to cause the condition.

What a relief because I -love- microwave popcorn with movie theater butter as a nightly snack.

The real problem with diverticulitis when it becomes chronic is that doctors start talking surgery after about the second or third time it  flares up.   I can't think of many things that sound worse than having part of your bowels cut out.  It sounds like something they used to do in medieval times to torture folks.

Diverticulitis is actually pretty serious business.  Most people have those pouches by middle age and don't even realize it because for whatever reason (luck) they don't become infected and inflamed.  But for those of us who are not that fortunate, it can become life threatening.

Our bowel could perforate and allow fecal matter into the abdomen.  Our colon could become blocked and feces would then move up into our stomach.  An abscess could form, infecting our intestines and possibly the entire abdominal cavity.  All of these are emergency situations and require a hospital stay and/or surgery. 

The pain of diverticulitis comes on suddenly - there is no warning at all.  One moment you're moving around fine and then it feels as if a knife is being stabbed into your lower abdomen, usually on the left side but it can be the right or across both, just above the pelvis.  Once that initial stabbing sensation happens, it only gets worse over the course of minutes and hours.

Not only will you have ferocious pain but you'll be unable to stand straight up, your body instinctively hunching over as it tries to protect the area.  Each small movement of your body sends another hot knife into the area.  You'll have the worst diarrhea ever and lots of it.  You will feel feverish, run a temperature and be nauseated, sometimes enough to throw up.  

You have to be seen by a doctor, usually in an ER setting.   They'll do a Cat Scan which will show the inflamed pouches.  They give fluids, antibiotics (two different kinds) and pain medication through an I.V.  By this time, you're begging for those pain meds that you hate to take any other time. 

You'll be sent home with those two antibiotic prescriptions in oral form and orders to rest for the next few days.  Drink lots of water and eat soft foods, liquids, to give your intestines a break so they can heal.  You'll be told to come back at the least change for the worse.  And they mean it - do not question yourself, don't put it off, come back in immediately.

So, because it can turn ugly in a few different ways and relatively quickly, surgery becomes a discussion in short order.  I'm afraid of surgery, anesthesia to be specific, because of prior history.  I do not want to have this conversation with my Gastrointestinal doctor, nor a surgeon.  I'm well aware that surgery while healthy is a much better option than in emergency circumstances but that doesn't ease my mind much.

Right now, I'm going to focus on getting better from this bout of diverticulitis and go from there.  As for the picture I've included at the top?  I have a laundry list of illness and disease and still, it's too often some new problem, some fresh hell.   Plus, I love Sheldon Cooper's sense of humor.  You can't go wrong quoting him!

Monday, November 25, 2013


I love finding funny or serious or even sad meme pictures that I can somehow relate to my life and/or the illnesses that I have.  Those little pictures seem to reach out with their words of wisdom, sadness, snark and laughter.

When I peruse the other blogs that I follow, I enjoy looking at pictures that people have chosen to use as a visual for where their mind and heart are at, in the moment. 

I came across this post yesterday and it was as if I had written it.  I think all of us who write a chronic illness blog can find ourselves in what she had to say.  We want so much to be able to commit to our blogs, share our experiences with others, and even find a measure of therapeutic relief with the spill of conscious thought.

But sometimes, by the very nature of having a disease, being sick, we cannot formulate cohesive thought and get the words onto the screen.   We're in pain and weak and tired so we promise ourselves that tomorrow we'll be better, do better.  

After some thought, I realized that it's okay (and not lazy at all) to post those meme pictures and either a brief caption beneath or nothing at all.  Sometimes, those pictures can say all of our words for us. 

Physician Wisdom Is Not Always An Oxymoron

One Of The Most Important & Informative Letters A Person With Chronic Illness Will Ever Read

Sunday, November 24, 2013

Cover Girl & Clairol

This picture reminds me of two fibromyalgia patients sitting next to one another in their shared purgatory of yet another doctor's appointment.

It's symbolic of how we look on the inside showing up on the outside - messy, smeared and blurry.   How we attempt to hide the physical manifestation of a disease but the truth is there to be seen:  Pale skin, a grimacing twist of the lips, hollow and pain dulled eyes that still  manage to convey our anger, shock and disgust with what is happening to our bodies.

There is a kinship, two strangers and yet they know things about one another that nobody else does, or understands, like they do. 

Therein lies the sense of ironic amusement to be found in my interpretation of the meme - we know the brutal truth of our circumstances and we still look over at the next guy and give a thumbs up to their frightful hair.  

Sleep Apnea & The Mean Machine

I found out a long time ago that I have sleep apnea.  After two different surgeries, the last one just a few months ago, I was told that it was pretty bad and to have a sleep test done as soon as possible.  I had that done and it was confirmed - I quit breathing over 40 times an hour while I slept.  It was classified as severe apnea and a machine was ordered.

I've had it for about two weeks now and I'll admit, I don't like it much.  I'm not a doctor but I feel like the pressure setting once I'm asleep is too high as it can actually startle me out of sleep when it pumps a rush of air into my lungs.

It dries out my mouth and nose - I'm a mouth breather while I sleep so I have to use a full face mask.  And by the way, when I've watched Youtube videos about the different varieties of face masks, they make mouth breathers sound like knuckle dragging cavemen.  Like we can help it when our jaw flops open at 2 a.m.

I've heard from friends and family that either use an apnea machine or know someone who does, how much they love it and how well it works.  That they've gotten the best sleep they can remember. 

Why isn't this happening for me yet?  Why do I struggle to fall asleep at all and why do I wake up in a panic in the middle of the night, already reaching for the mask to yank it off because it feels like I have an iron lung breathing for me?  Why am I not feeling refreshed, ready to jump out of bed and sing with the birds each morning?  And why does my tongue feel like it died whenever I wake up?

I really looked forward to getting the sleep apnea machine.  I want this to work and to help make me feel even a little better.  I know it's not going to be the magic cure for my fibromyalgia, IBS, hypothyroidism or anything else that's on the 'wrong with me' list.  But, if it allowed me a good night's rest so I could start over every morning in my quest to cope with being ill, that would be fantastic.

I guess I just need to keep trying.

Monday, November 18, 2013

I Like The Word Recluse

Okay, so I did this list of my favorite love story movies here on the blog and that took up a lot of time and space.  But, I enjoyed it and sometimes it's good to get away from the subject of chronic illness, which is, over all, what this blog is about.

While writing those much more fun posts over the past few weeks, there have been some developments with my health that I want to share.  Also, I've read some great blog posts in that time that I'd like to point my readers to.  And lastly, some research and studies that I've stumbled upon.  The next few posts will be about all of that stuff.

To start with, I thought I would share something that I told my Love recently and maybe some of you can relate as well:

Most of the time, I'm okay with what I can do now. I have a better handle on the limitations and I don't let them get me down like they did even months ago.  I've felt like, and even said - it's fortunate that I'm a homebody type of person and always have been. It's the one area where my personality actually meshes with having a disease that debilitates.

That said, there are times that I want to go and do things. I want to get out of the house and go shopping for a few hours, out to lunch or a movie.  Spend time with friends or family.  I want to breathe the air outside and smell which season it is.  I recently learned that I'm vitamin D deficient and I'm not even surprised since I rarely get out to feel the sun on my skin.

Learning to manage this life has been a struggle.  It's better now but I have my moments. I still push too hard at times.  More often though, I lay down, sit down, rest or say no, cut things shorter than I once would have, or I don't go.

I've tried to narrow my world into exactly who is most important to me, doing what means most to me, what makes me happy.. realizing that energy levels and pain play such a big part in my decision making now.

And I'm okay with that almost always.. but once in a while, that world seems to close in on me and I want to be a butterfly for a little while. Or now and then, I watch those I love and their wider world and I want to join them in it so much.

Thursday, November 7, 2013

My Favorite 'Love Story' Movies: #1

The Bridges of Madison County - Starring:  Clint Eastwood & Meryl Streep

IMDB Link: The Bridges of Madison County 

8Track Love Movie Playlist 

My favorite song from the movie:  I See Your Face Before Me by Johnny Hartman

Why I love the movie:  The first time I watched this movie, years ago now, I sobbed until it hurt.  Since then, I've seen it many times and the same holds true.  I cannot watch it without a little piece of me breaking.

This film, by far, gives the truest depiction of most women's lives as a wife and a mother.  We sacrifice more than our family will ever know, we lose parts of ourselves, our own definition, by those sacrifices for others.  We are taken for granted and overlooked.  We are rarely asked if we're happy as a person, if we're fulfilled as a woman.

Our families, most often, do not know that woman - our hopes and dreams, things we gave up and left behind, what hurts us and what makes us giggle.  They don't know that a certain song can make us cry in the bathroom because it brings back a memory.  They don't know that we sing really loud and dance around the kitchen when we're alone because we've been told we're embarrassing when they're home.

Francesca is a beautiful, passionate woman who has forgotten her own needs in the day to day details of  life.  Her husband knows her as his wife and the mother to his children but one realizes while watching that he doesn't know her.

But, Robert does.   He comes down the dusty lane one day and within one drive to the bridge and back, he has fallen in love with everything Francesca is.

Francesca and Robert are not young.  They're in the middle of their lives when they finally find their soul mate and they get only four days to live a lifetime of love.  It's beautiful and heart breaking.

I cannot sit here and write this without feeling tears sting my eyes as I think about the end of the movie.  Francesca's trembling hand gripping the door knob, her knuckles white.  Her eyes huge and puddled with tears.  Meryl Streep doesn't say a word in this scene but she doesn't need to.  Her face and body eloquently speak the depth of love, pain and how fragile she is in the moment.

It is her biggest and final sacrifice for her family.  You don't know whether to love her more for her strength of character and her obvious love for them or to scream and rail when she doesn't open the door and run across the street in the pouring rain to jump into Robert's truck.

I love that this book is about her adult children reading their mother's journals, reading the story of her and Robert's love and finally getting to know her as a woman.  I think it's important for children to know who their mother is or was, once they too are adults and can understand choices and sacrifices she made for them.

This movie is not the typical love story at all.  However, it is the one movie I would most recommend anyone watch - male or female, young or old, married or single.  You'll realize that even if it takes years,until death inevitably finds them, soul mates will find a way to be together eternally.

I couldn't choose just one favorite quote from the movie so I've included a few.  The writing is so real and true to a once in a lifetime love, if we're lucky enough to ever find that one person created to be our match:

Francesca: "I had thoughts about him I hardly knew what to do with, and he read every one. Whatever I wanted, he gave himself up to, and in that moment everything I knew to be true about myself was gone. I was acting like another woman, yet I was more myself than ever before."

Robert: "This kind of certainty comes but just once in a lifetime."

Francesca: "I realized love won't obey our expectations, it's mystery is pure and absolute."

Robert: "When I think of why I make pictures, the reason that I can come up with just seems that I've been making my way here. It seems right now that all I've ever done in my life is making my way here to you."

My Favorite 'Love Story' Movies: #2

The Notebook - Starring:  James Garner, Gena Rowlands, Ryan Gosling & Rachel McAdams

IMDB Link: The Notebook 

8Tracks Love Music Playlist 

My favorite song from the movie:  I'll Be Seeing You by Billie Holiday

Why I love the movie:  This film is the very essence of love - it's fire and madness at times, it's sorrow and longing and it's a truth in our soul when we meet the mate to it.  We know when we find that person and we know that there can be only one in the whole of our lifetime.  

It shows that love is not perfect, not even close to it.  That love can be made stronger simply by those imperfections and working through them.  And sometimes, what we love most are those imperfections in the other person.

Destiny plays the pivotal role in Noah and Allie's story.  These two are meant to be and in the end, nothing can stand in the way of that happening.  Their passion is so consuming and poignant that it by turns makes you want to be kissed so hard your lips bruise and the next moment, held close and rocked as you cry over their love story.

I couldn't narrow it down to just one favorite quote from The Notebook because there is so much beautiful writing in the film.  Thus, I've decided to include a few of them and each of them speaks to my heart:

Noah: "I am nothing special; just a common man with common thoughts, and I've led a common life. There are no monuments dedicated to me and my name will soon be forgotten. But in one respect I have succeeded as gloriously as anyone who's ever lived: I've loved another with all my heart and soul; and to me, this has always been enough."

Young Noah: "My Dearest Allie. I couldn't sleep last night because I know that it's over between us. I'm not bitter anymore, because I know that what we had was real. And if in some distant place in the future we see each other in our new lives, I'll smile at you with joy and remember how we spent the summer beneath the trees, learning from each other and growing in love. The best love is the kind that awakens the soul and makes us reach for more, that plants a fire in our hearts and brings peace to our minds, and that's what you've given me. That's what I hope to give to you forever. I love you. I'll be seeing you. Noah"

Noah:  "She had come back into his life like a sudden flame; blazing and streaming into his heart. Noah stayed up all night contemplating the certain agony he knew would be his if he were to lose her twice." 

Allie: Do you think our love can make miracles?

Noah: I do.

Allie: Do you think our love can take us away together?

Noah: I think our love can do anything we want it to.

Allie: I love you.

Noah: I love you, Allie.

Allie: Good night.

Noah: Good night. I'll be seeing you.

Tuesday, October 22, 2013

My Favorite 'Love Story' Movies: #3

Ghost - Starring:  Patrick Swayze, Demi Moore & Whoopi Goldberg

IMDB Link: Ghost 

8Track Love Movie Playlist 

My favorite song from the movie:  Unchained Melody by The Righteous Brothers

Why I love the movie:  Ghost is simply a timeless classic and always will be.  It speaks to our hope that there is something beyond this life - something beautiful and peaceful.  A place where we will again see those we love who went before us. 

To me, that is the one of the best messages of this movie - that nobody is lost to us forever.  At the end, when Sam says to Molly, "See ya", it is his promise to her that they will be together again someday.  

Death is hardest on those left behind to miss us.  Sometimes, it is only the hope of Heaven, a place of eternal love, that gets them through the worst of the loss.

Just like a much darker movie, The Crow, this film speaks of coming back to seek justice, right the wrongs, and protect those we love.  It makes us think about guardian angels, our loved ones still watching over us and, I think, finding a profound happiness in our lives and how they touched them while they were alive.

The other thing about Ghost that I love - you just have to have faith and believe.  During times of the worst pain, physical or emotional, times of sadness and despair, the hardest thing to do can sometimes be to jump into belief of things we cannot see or touch.  But that belief is often the only thing that saves us.  God is real, he is a loving God and he will take our hand if we reach out for his.

My favorite quote from the movie:  "It's amazing, Molly. The love inside, you take it with you. See ya."

"I've had more lifetimes than any 10 people put together, and it's been an amazing ride...So this (dying) is O.K." - Patrick Swayze - R.I.P.

My Favorite 'Love Story' Movies: #4

Love & Other Drugs - Starring:  Jake Gyllenhaal & Anne Hathaway

IMDB Link: Love & Other Drugs 

8Track Love Movie Playlist

My favorite song from the movie:  Maggie & Jamie by Bloodstream

Why I love the movie:  This movie is difficult for me because the storyline is about a woman who has an incurable and progressive disease, Parkinsons.  Maggie is an artist, a free spirit that says exactly what she thinks and lives life with gusto, a passion and fearlessness that many of us are unable to attain. 

It's not until the middle of the movie that you see the disease progressing and how that affects her on a physical and emotional level.  As painful as it is to watch, it's also inspiring to see how hard she fights for normalcy, to not be a victim of her own body.

The movie shines a light on a subject that rarely comes up in film - the guilt that sick people feel over how their illness or disease affects those around them, specifically their loved ones.  How do we ask or expect or even want them to stick with us through possible years of changes the disease will enforce. 

One of the hardest scenes of the movie is when an older gentleman, whose wife has had Parkinsons for years, talks with Jamie, Maggie's boyfriend.  Jamie, played by Jake Gyllenhaal, is new to being in a relationship with a person who is ill.  The older man lays out what it's like to love someone with a disease. 

He brings home the point of - I fell in love with a healthy, vibrant woman and what I'm left with is a sick, slowly dwindling away, wife.  He makes it clear that had he known in the beginning that this is what his life would become, he would have left.  It's a poignant, yet brutal view into the perspective of a person that loves someone who is sick.

On a personal level and taking the liberty of speaking on behalf of all people who have a debilitating disease, watching that scene was a validation of so many of our guilt feelings and insecurities.

I could be strong while watching Maggie's hands tremble as she tried to open a bottle of medication.  Or when she poured herself a drink and it sloshed over the side of the glass. 

We watch those things and we can relate.  We know how frustrating it is.  We know the inner dialogue she's having because we've had it a thousand times too.  We're okay, most of the time, with handling our illness.  What hurts us most is watching what it does to those we love.

My favorite quote from the movie:  "Sometimes the things you want the most don't happen and what you least expect happens. I don't know - you meet thousands of people and none of them really touch you. And then you meet one person and your life is changed forever."

Wednesday, October 16, 2013

My Favorite 'Love Story' Movies: #5

Practical Magic - Starring:  Sandra Bullock, Nicole Kidman, Aidan Quinn, Stockard Channing, Dianne Wiest

IMDB Link: Practical Magic

8Track Love Movie Playlist

My favorite song from the movie (and also one of my daughter's favorite songs of all time):  Crystal by Stevie Nicks

Why I love the movie:  I believe that not only is love magical, so are people.  We all have our special abilities and talents.  Each of us are unique and bring something to life that only we can.  Nobody can speak or laugh as we do, nobody can create beauty in the same way as another. 

Sally casts a spell as a child, hoping to divert love and a broken heart when she grows up.  The spell in turn brings her the one man who is her soul mate.  Some things are destiny and magic always plays a part in the turn of fate's hand. 

The relationship between the sisters, Sally and Jillian, and with their aunts is another reason I love the film.  This movie is very much about the strength of women, our power over adversity, the ability to keep standing up and moving forward and our need for one another in the best and worst times. 

This, to me, is magical - that we're tiny specks of light in a vast universe and yet beyond all understanding, each of us are meant to be here for just a little while to make a difference, to be loved and love in return. 

My favorite quote from the movie:  "I dream of a love that even time will lie down and be still for."

My Favorite 'Love Story' Movies: #6

Notting Hill - Starring:  Hugh Grant & Julia Roberts

IMDB Link: Notting Hill 

8Track Love Movie Playlist 

 My favorite song from the movie:  How Can You Mend A Broken Heart by Al Green

Why I love the movie:  Hugh Grant, as the male lead, is hysterically funny, shy and awkward as he tries to navigate falling in love with a gorgeous movie star while being just an ordinary man.  I think it's great that he owns a book store because that's been a dream of mine as well. 

There's his best friend and roommate, Spike, an artist who adds a sense of the creatively insane to the film.  That appeals to me since I think all artists, of any genre, are some form of the Mad Hatter.  (That needs to be a blog post of its own.)

The wonderful thing about Notting Hill is how it defines love.  It can bring us to our knees and lift us up so high we have to look down to see the stars.  It doesn't care about our plans or prejudices.  People are just people - rich or poor, gay or straight, black or white, sick or healthy.  Love is the great equalizer in this world.

My favorite quote from the movie:  "After all... I'm just a girl, standing in front of a boy, asking him to love her."

Tuesday, October 15, 2013

My Favorite 'Love Story' Movies: #7

Legends of The Fall - Starring:  Anthony Hopkins, Aidan Quinn, Brad Pitt, Henry Thomas, Julia Ormond, Karina Lombard

IMDB Link: Legends of The Fall 

8Track Love Movie Playlist

My favorite song from the movie:  The Ludlows by James Horner

Why I love the movie:  This one is difficult to write only because there is so much to love in the film.  It's a sweeping epic that stuns with the rugged and majestic scenery combined with multiple stories that intertwine to create what is simply - family - in all its complex simplicity.

If someone were to ask me to list five movies they should see, Legends of The Fall would be on the list. 

I think that I relate to it on a personal level because I have Native American blood and the movie has heavy tones of that culture - not only with characters but the music, the beliefs and the way of life that is lived.

It is the story of three brothers and their love for one woman.  A story of war and honor, a father who has seen the truth of battle and his inability to stop his sons from seeing it too.  Love, war, loss and betrayal tear the family to pieces.  You watch them try to find their way back from tragedy but this movie is not about neatly tied plot strings and happy endings.

Rather, it's about life - real life - where most often, you don't get 'do overs' and sometimes the only happy ending is learning and breathing.

My favorite quote from the movie:  "One Stab: Some people hear their own inner voices with great clearness and they live by what they hear. Such people become crazy, or they become legends."

Friday, October 4, 2013

My Favorite 'Love Story' Movies: #8

Beauty & The Beast - Disney Animated Classic Film

IMDB Link: Beauty & The Beast

8Track Love Movie Playlist

My favorite song from the movie:  Beauty & The Beast by Celine Dion & Peabo Bryson

Why I love the movie:  Well, first of all, who doesn't like Disney movies?  We all have our favorite - which one is yours?  Take a moment to think about it and smile as scenes pop into your head and you hum a song from the movie. My favorite is Cinderella, for a couple of reasons.  It was the first (and only) movie my mom ever took me to see in a theater.  And, later on in my childhood, I very much felt like Cinderella and waited for my prince and a better life. 

But, back to Beauty & The Beast - I love the moral of the film.  To find love in someone no matter what they look like.  To base that feeling on who they are as a person (or beast, lol) because it really is the soul and mind that create true beauty in people.  Each and every person has a soulmate in this world.  I believe that with all of my heart.  We have to find ours or hope that the path in life that we walk takes us to them.  But if you've got some set idea in your head of what they should look like, you just may not see them as they pass you by. 

This movie really is about not judging others because that's what gets Beast in trouble, in the first place.  It's a good lesson to learn - giving people a chance and sometimes many chances to show us who they really are.

My favorite quote from the movie:  "It's a pity and a sin / she doesn't quite fit in / 'cause she really is a funny girl / a beauty but a funny girl / she really is a funny girl... that Belle."

My Favorite 'Love Story' Movies: #9

A Walk To Remember - Starring:  Mandy Moore & Shane West

IMDB Link: A Walk To Remember

8Track Love Movie Playlist

My favorite song from the movie:  Truly, Madly, Deeply by Savage Garden

Why I love the movie:  Some people question the ability of young people to love for real.  They call it puppy love, a crush.  They minimize it and say you'll love many times in your life, this is only the first time.  I think we forget what it's like to be that young and to give everything we have to love.  We are not yet jaded as we withhold aspects of ourselves.  We havn't learned how to play games yet with love.  When we are young, we are trusting and generous with our emotions and showing them.  We're fearless as we jump.  We are simply - free. 

This movie shows the beauty of young love.  It shows how love can change us, make us better people.  It shows that yes, another person can be responsible for our happiness with just their presence in our life.  It also shows the wrenching sadness of watching someone that we love who is ill.  And their process of death.  But it does it in such a way as to make life and even the end of it a joy to behold because of unselfish acts in being there for someone, in making those last days special, making dreams come true.

Most adults can watch this movie and be taught a thing or two about true love, how pure it can be.  What it means to really put someone else before yourself.  If we allow it to while we watch, it can take us back to our own first love and being young, remembering when maybe we were a better version of ourselves because we were innocent & vulnerable.

Wednesday, October 2, 2013

My Favorite 'Love Story' Movies: #10

Hope Floats - Starring:  Sandra Bullock & Harry Connick Jr.

IMDB Link: Hope Floats

8Track Love Movie Playlist

My favorite song from the movie:  Make You Feel My Love by Garth Brooks

Why I love the movie:  The spirit has an indescribable strength at its very core that almost always allows us to hope for a better tomorrow.  Birdie has not only been betrayed by her husband but also her best friend and on national television to make matters worse.  Forced to face truths she had no inkling of and to become a single mother that moves back home, she proves the cliche is true - That which does not kills us makes us stronger. 

Sandra, as Berdie, makes us feel like she's one of us.  The girl next door, the mother and wife doing her best - nothing special, just an ordinary woman who is heartbroken by circumstances many women can relate to.  That's the beautiful thing about Hope Floats - from beginning to end, it's our lives there on the screen.  It's our story or a version of it.  It seems like we lose small pieces of ourselves along the way until we don't recognize who we've become in comparison to who we once were. 

The female relationships in this movie are told with such honesty and simplicity.  Gena Rowlands as Berdie's opinionated and tough mother.  Berdie's relationship with her young daughter, Bernice, as the child tries to understand the end of her parent's marriage and abandonment by her father.

Through scene after scene, you root for Berdie and Bernice to make a better life.  You watch Harry Connick Jr. as Justin Matisse and think that is the sexiest name ever for a romantic hero that says to Berdie, "Dancing's just a conversation between two people. Talk to me."

My favorite quote from the movie:   "Childhood is what you spend the rest of your life trying to overcome. That's what momma always says. She says that beginnings are scary, endings are usually sad, but it's the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up. And it will, too.."

My Favorite 'Love Story' Movies: #11

Someone Like You - Starring: Hugh Jackman, Greg Kinnear & Ashley Judd

IMDB Link: Someone Like You

8Track Love Song Playlist

My favorite song from the movie:  Dreamsome by Shelby Lynne

Why I love the movie: Sometimes, we're so focused on who we think or want to be 'The One' that we're blind to just how wrong for us they are.  The right one can be there in front of us, or better put - beside us - as they listen, make us laugh, hold our hand, help us to be better people and be our friend.  Someone Like You shows that truth in hysterically funny, charming and poignant scenes.

I never cried while watching this movie which is unusual for me - chick flicks can pull tears from me like no other.  But I did laugh and smile those sappy smiles while I sighed and cheered and felt that there is hope for true love to be found in the most unexpected people.

My favorite scene in the movie is when Jane and Eddie finally have the confrontation over Jane's misandy beliefs after a painful breakup with Ray.  Realizing that Jane is simply heartbroken and trying to make sense of it all, Eddie sits on the end of the bed, takes her in his arms and tells her, "I know it hurts. I know. Maybe that's why we hold on as hard as we do.. we just can't believe that such a miracle can ever happen to us twice.  Someday you'll find it again." 

My favorite quote from the movie:  "There are few things sadder in this life than watching someone walk away after they've left you, watching the distance between your bodies expand until there's nothing... but empty space and silence."

My Favorite 'Love Story' Movies: #12

P.S. I Love You - Starring:  Gerard Butler & Hillary Swank

IMDB Link: P.S. I Love You

8Track Love Song Playlist

My favorite song from the movie:  No Other Love by Chuck Prophet

Why I love the movie:  We all want to be remembered.  We wonder how we'll be remembered.  What memories did we make that were special to our children, our spouse?  Is there a brother, a sister or even a parent to remember us as a chubby child with a dirty face?  A friend to remember us as an awkward teenager that was full of potential to be an amazing adult?

It's not about sadness, grief or mourning.  We would much rather our loved ones celebrate the life we had and keep us alive in their memories with stories told to our grandchildren and great grandchildren.

The first moment this movie shattered me was after Gerry passed away, Holly kept calling his phone just to hear his voice on the voicemail message.  I sat, curled in a chair, sobbing until my ribs hurt.  We want to be remembered for the big things, or who we were as people, but it's something as small as our voice that is truly needed by those we leave behind. 

How Gerry has planned the year after his death to help his wife get on with her life is special and remarkable.  It's obvious he knew her even better than she knew herself to take her through each step of grief to acceptance and new love. 

I've included one of my favorite scenes from the movie.  Holly cannot fall sleep alone - it is then that she misses Gerry most.  I think everyone can relate to that.

Saturday, September 7, 2013

Background Music

I don't remember a time in my life, even as a very young child, when there wasn't music playing in the background.  Music in the car and in the house - 33 and 45 records spinning on the player.  Little transistor radios blared through the neighborhood as children rode bikes and caught lightning bugs. 

Music filled my grandpa's kitchen from an old clock radio that sat high on a shelf.  I remember him sipping coffee, beer and whiskey - yes, one right after the other.  He was hunched over in his chair, elbows on his knees as he lit one cigarette off the last.  His kitchen was the scent of Pall Mall smoke and the best soup ever made, simmering on the stove.  My grandpa always looked like he was somewhere else, far away from that little room as the music played.  I remember standing quietly in a corner of that kitchen and listening to Queen - We Are The Champions as I stared at my always silent grandfather and wondered what he thought about hour after hour. 

All of us remember historical events whether bad or good and what we were doing or where we were when they happened.  I can't speak for everyone but I know that so often, a song or an artist is attached to not only those historical events but the personal memories as well.  Music has been the constant, soothing soundtrack to my life.

When I was seven years old, I came downstairs one morning to find my mother kneeling on the floor in front of the TV.  She was crying, sobbing really - great big hiccuping sounds of grief.  Of course it frightened me, wondering if she were ill or hurt.  "What's wrong, mommy?", I asked.  She finally managed to stutter out, "Elvis is dead."  I suppose that seems like an overly dramatic response to a celebrities death but he was Elvis and he belonged to all of the fans that loved him.  Maybe that's why he died so young.  Too much love.

My dad liked to watch cowboy and Indian movies when I was just three and four years old.  He would lay on the floor in front of the TV and I would sit on his back and watch too.  The Indian music fascinated me.  The war dances, the guttural chanting that could turn into beautiful rain dance singing.  There was something brutal but poetic about the native American voice and its cadence.  I have Indian blood so feeling that music means a lot to me.

My mom liked to watch the Sonny & Cher show and my dad watched Hee-Haw.  Every Sunday we went to my grandpa's house for Kentucky Fried Chicken and he let us kids put up TV trays so we could eat and watch the Lawrence Welk show with him.  We, my two brothers and I, were exposed to all genres of music.  I didn't like the Lawrence Welk music at all.  It was painfully boring for a child and I assume for many adults at the time as well.  But, getting to eat in the living room was fun so I suffered through it.

When my older brother was a toddler, he would sit on the floor, swaying and wiggling his fingers as if playing a guitar.  My dad tells that story and says that Doug had music in his head before he was out of diapers.  I remember when I was nine years old, Doug would use a broom as his guitar and a Lite-Brite as an amp to give us concerts.  Now, many years later, he owns too many guitars to count, has played backstage with Randy Rhodes, opened for Night Ranger and others, put out a CD with his band that sadly wasn't very successful.  But he still continues to play in venues like Hard Rock Cafe in Las Vegas.  He never made it 'big' but his love for music is intrinsic.  He writes and produces music and lyrics every day.

When I was a little girl I would play in the mud with my patty-pans, content to make mud pies while listening to 'Rock The Boat' or 'Afternoon Delight'.  I had no idea what either song meant but I liked the beat to both and would wiggle my scrawny butt in the dirt as I sang along.  I cried each time 'Wildfire' by Michael Martin Murphy played on the radio because somehow, I could understand what that song was about.  My dad would sing 'Brown Eyed Girl' to me and I would smile big and spin around in circles. 

I have very few memories with my mother and the ones I have are mostly bad.  But, I remember how beautiful she was when she was a young woman and how she loved to dance.  Both of my parents enjoyed dancing and were quite good at it.  They taught me how as well.  One night, my mom was getting ready to go out to a disco club with her sister and friends.  All of the women were in my mom's bedroom, doing their hair in hot rollers and putting on makeup.  I sat quietly on the bed and watched them, fascinated.  I wanted so much to be a woman making herself pretty for a night of dancing but I was only six years old. 

The song, We Are Family by Sister Sledge came on and all of the women stopped what they were doing to disco dance together.  My mom grabbed my hand to pull me off the bed and they taught me the steps of the dance.  I felt loved by my mother, included in her life, for just a few minutes.  The memory has remained with me for years.

My dad taught me many of the dances from the 50s and 60s - the stroll, the twist, the bop, hand jive and the mashed potato.  My mother is Swiss and one cannot be a proper Swiss child without learning how to polka.  Dancing just feels good, whether you're young or old, talented or not, you just shake your butt and sway, snap your fingers and shimmy.  Dancing is joyful.

I remember being about 13 and reading Stephen King's book, Salem's Lot by flashlight, under the covers in my bed.  The little clock radio was on low since I was supposed to be sleeping.  Come On Eileen by Dexy's Midnight Runners played while I was reading a particularly scary part of the book and to this day, I cannot hear that song without shivering and thinking of vampires.

We lived on a farm so there was always a lot of hard work to be done.  I danced and sang as I cleaned the house, picked vegetables in the garden and helped feed the cows and pigs.  Like my brother Doug, music was in my head even when it wasn't playing in the background. 

When I became an adult, I continued the tradition of playing music all day.  A radio was on or my computer played mp3s far more often than the drone of a TV could be heard in our house.  Our children were exposed to all genres of music.  My husband, John, loves classical music.  I don't, though I can respect the genius of the music.  Our children don't care for classical either but at least they've heard it often and know some of the composers.  They heard a lot of classic rock, 80s music (as that was mine and John's generation of teen years), country, classic country, pop, blues and R&B.  Later on, our son introduced rap into our household listening and as parents, we even came to not only appreciate the genre and it's worth to the history of music but also to pick our favorite hip-hop artists and listen to it often.

I've found that I'm a person that listens to music by mood.  I have playlists for joy, rage and sadness.  Songs for when I feel introspective and quiet, songs for when I feel sexy.  I have a disease that greatly affects my life every day.  One of those ways is sensitivity to noise.  It doesn't have to be loud or an irritating noise.  Often times, I find myself turning the volume very low and only listening to soothing music.  But I miss my wild jam sessions, head banging to Metallica, growling along with Texas Hippie Coalition and feeling the vibration of drums and bass in my chest. 

Music is, as I said, the background of my life.  It always has been and it always will be.  I need the instruments and lyrics to keep all of my memories as vibrant and alive as when they were made.  I need music to heal me.  I need it to bring me off my chair and already dancing before my feet touch the floor.  I need it to go to sleep.  Music is my friend and companion even when I'm alone.  Music is medicine.

Wednesday, August 21, 2013

Response To A Forum Post

As I've mentioned in the past, I am a member of a Fibromyalgia forum over on MDJunction.  I read a post this morning authored by the daughter of a woman who has fibromyalgia.  It touched my heart because any time a family member or friend reaches out to try and understand this disease and how it affects their loved one is important and special.  We want to be understood and we need the support of those that love us.

I'm not including the post by this adult daughter because it's not mine to share.  However, I have chosen to put my response to it here on the blog in hopes that it may help others to see the picture of fibro from a patient's viewpoint.


I'm going to keep scrolling up and reading your post so that I can respond to things you mentioned. But before that, I want to say that everything I write here are only my opinions/beliefs based on my own experiences with having fibromyalgia.

I think that fibromyalgia is a progressive disease of the central nervous system, including the brain/spine/nerves. Our pain does get worse over the years, we do become more debilitated by the pain and other things that often times go hand-in-hand with fibromyalgia. Those things can be: Irritable Bowel Syndrome, spastic bladder, tempomandibular disease (jaw disease), migraines, sleep apnea, just to name a few.

I also believe that even as fibromyalgia progresses, it can also go into remission for periods of time. So you have people who become better, more active, more like their old selves for a period of time but then when the remission ends, they may be worse than before that remission began. All of that said, some people never go into stages of remission.

Fibro can stay at the same level for long periods of time, it can have those remission periods and it can progress quickly. It's different for everyone.

As far as your mom being pill dependent: There is so little that gives us any relief from a pain that never ends. The question is never: Are you in pain? The question is: What level of pain are you in?

This is my thought regarding medication: We are suffering and if medication helps, we should be allowed that. We're not taking the medications for no reason other than the high they can give an addict. There's a vast difference between medical need and recreational use. People would not question a victim of cancer needing pain medication to help their quality of life, why do they question our need of them for the same?

There is a fine line for us, and believe me, we are aware of it - Take the medications and suffer less pain but sleep too much, feel lethargic and not really present in our own lives at times (or) do not take them, or don't take them often enough and feel that pain constantly but we're awake and mobile and present.

Think about this: When a person is in pain, any pain - a cut, a fall, a broken bone, a charlie horse in the leg, a headache - the brain only wants to focus on that pain. It's hard to think past it, beyond it until it starts to heal or you take aspirin or stronger meds. This is our life every minute of every day. We do not heal from fibromyalgia.

As for your mom's sleep issues - staying up all night and sleeping all day: Most, if not all of us have sleep issues. We have sleep apnea and/or we're chronic insomniacs. Many of us cannot achieve stage four of sleep which is where the repairing of our bodies happens. There are many forum posts about this on the Fibromyalgia forum.

We wish we could sleep like normal people. Go to bed at night and wake in the morning, rested and ready for the day. But, as I mentioned, this is a disease of the brain and since the brain controls literally everything the body does, our sleep does not escape its reach either. It comes to a point for us that we take any sleep we can get. A five minute nap at noon, a two hour nap at 4 a.m. A twelve hour sleep from noon until midnight.

You mentioned good diet, exercise, mental and emotional therapy, support system and positive outlook as things your mom can do to try and help herself. You're right, all of those are important. But, there's so much more to it. It's easy to offer up those things as helpful suggestions but not so easy to put them into practice for a patient of fibromyalgia.

Let's talk about exercise first. In my opinion, exercise isn't really about relieving our pain. Many of us report feeling worse pain and exhaustion after even the lightest exercise and/or stretching. The reason exercise is so important for us is this: It's about maintaining muscle strength, flexibility, joint fluidity and our ability to remain mobile.

We are in so much pain and constantly tired (due to that lack of good sleep) that we want to stay in bed and rest or sit in a recliner or on the couch and rest. Some of us do end up bedridden or wheelchair bound because we have given into that feeling of - I don't want to get up and move because it hurts me. The worst thing we can do for ourselves is give into that mindframe. We have to push ourselves, push through the pain, get out of bed, at least do some stretches, brush our teeth, take a shower. We must continue to live as normal a life as we can possibly manage. Simply put - use it or lose it.

Your mention of emotional and mental therapy for your mother: Also a great idea and much needed for many of us. Being diagnosed with an incurable, life altering and painful disease of any kind will put a person into a tailspin. It changes everything for us. We deal with shock, disbelief, anger and sadness. We go through the five stages of grief - if you havn't researched that, I really suggest that you do. It explains so much, and so well, what we go through.

Some people can go through those stages fairly quickly and get a good grasp on this new life that has been forced upon them. Some people may struggle with it for years. Just when they think they've found the acceptance stage and they're doing better, they take two steps backwards and have to deal with the sadness and anger all over again. I personally believe it's a never ending process, finding ways to accept the disease and our new lives within it.

Therapy can help a great deal with that but the key there is to find the right therapist. There are still too many people who do not believe in fibromyalgia. Or they think textbook answers and therapy will help everyone. Fibromyalgia affects everyone differently, not only physically but mentally and emotionally as well. Thus, therapy cannot be a one size fits all. We just want to be heard, someone to listen, believe in us and allow us to spill out the ocean of emotion that we feel over being sick.

A support system is the best thing any fibro-patient can have. Our family, friends - loved ones who believe and listen and help us. We feel horribly guilty for how our disease affects those we love. When one person in the family becomes sick, everyone feels it. We need to be reassured that we're not a burden, that we still have something to offer our families, friends and the world at large.

This is a complex illness that the doctors, scientists and medical researchers do not yet understand. Precious little is known at this point but there are many studies being done and things coming to light.

I agree with you that your mom can make small changes to her life and they will help her to feel better overall.  Be as patient as you can, maybe offer to do some of those stretches with her. Most of all, just love her.

I have an adult daughter too - she's 23. I have such a hard time telling her or my adult son about being sick. I don't want to worry them, don't want to put this load on their shoulders. Moms think they always need to be strong for their children, even if that strength is simply not opening up about their illness and how it makes them feel.

Wednesday, August 7, 2013

Adios, Cowboy Killers

I miss smoking.  Not constantly, not in a way that drives me crazy to light up a cigarette.  But now and then, the thought crosses my mind that I miss the relaxation it allowed me.  For me, it was the habit, the comfort of those habits.  Sitting in my office, at the desk, a cigarette burning in an ashtray, reaching for it without thought and taking that shallow drag.  Just enough to fill my mouth with the taste.

It soothed me.  That rhythmic hand motion while I talked with my Love or wrote thoughts and emotion, watched Youtube videos, read books or simply surfed the net.  The mistake I made was tying the habit of smoking with my relaxing alone time at the computer.  They seem forever mated in my mind. 

I've purchased a rechargeable e-cigarette and cartridges.  When I feel the need for those habitual hand to mouth movements, I reach for that instead and it helps.  I blow out the vapor and feel like I'm blowing pain out with it.  Fibro-pain or IBS-pain or headache-pain.  It's one of my forms of release.

I won't ever smoke a real cigarette again.  I was forced into that decision by the surgery that I mentioned a couple blog posts ago.  I know it's better for my health, that I have made the best decision for my body.  I focus on that and the days slip by.  It's been three weeks since my last cigarette.  I wait for a month, a year.  I wait to quit missing that relaxing exhale of grey smoke.

Tuesday, August 6, 2013

Handicap Parking

My Rheumatologist filled out paperwork allowing me to obtain a handicap placard upon the approval of the state.  I've had that placard for three years now.  I keep it in my purse to use in any vehicle that I may be riding in.

Is it nice to be able to park close to stores or events?  Of course.  It helps to keep the pain manageable. Would I rather be healthy and able to walk any distance?  Definitely.

I didn't want that placard.  It's yet another symbol of  being debilitated by a disease.  Anyone that needs it will tell you that they wish they did not. 

But what bothers me the most, what makes me feel a surge of anger and hurt, are the reactions of some people.  I have had two different men, at different times, watch me park in a handicap parking spot, look down at the license plates on the car to see if it had the handicap insignia stamped upon it and when it didn't, they slowed their steps and glared at me. 

I will admit that both times, before hanging the placard, I slapped it against my window and glared back until they had the grace to look away.  I may be handicapped but both of my middle fingers still work fine.

I've had people watch me get out of the car and walk into the store.  All the while, shaking their head in judgement, with a disapproving look that clearly said - She's obviously not handicapped.  She can walk!

Is that the measure, the definition of handicap then?  Whether or not you're in a wheelchair?   Maybe if you have cancer and you're bald from chemotherapy, you're allowed to park in those spots without condemnation.  But what if you're so embarrassed by your lack of hair that you wear a wig?  Will people then judge you to be 'perfectly fine' and give you a dirty look as you walk into that store?

What if you're the soldier who lost a leg?  If you were in a wheelchair and wearing your uniform, people would walk up and tell you, 'thank you for your service', often times with tears in their eyes.  But what if you're that soldier wearing a prosthetic leg and jeans, not wanting to walk too far because you're still getting used to it.  Would those same people mutter under their breath about the 21 year old punk-kid parking in handicap and faking a limp as he walked into the store?

Maybe you're the woman who has an incurable but not terminal disease.  A disease that is invisible to everyone but those that know her best.  Those that can see the pinched look around her mouth, the pain shimmering in her eyes, shoulders that hunch against the agony radiating through her body.  You're the woman that forces herself out of bed every day to keep being present in not only your life but the lives of those that love you.

You're the woman who takes a cocktail of prescribed drugs when nobody is looking because to show how sick you are hurts your pride, your need to be strong.  The woman that wants to work, wants to feel independent again but cannot.  You're the woman who knows what suffering means, who grieves for the life you used to have while doing your best to find a new life with a disease that because it is invisible, too many people disbelieve and disregard.

And you're the woman who, because of fibro-fog, forgot how to get to Walmart.  You pull over to cry in frustration until you remember the way again.  And once you get there, relieved, and park in the handicapped spot, you walk into the store even as the pain makes your feet feel broken.  Every step sends sharp, stabbing, aching and throbbing pain up into your legs.  Your ankles, knees and hips hurt.  Your spine and ribs are aching.  Your purse feels like a 50 pound weight on your shoulder.

Through all of that and more, you choose to walk instead of using a wheelchair because your worst fear is losing mobility and the last pieces of your independence.

But you look just fine, perfectly healthy and so, there will be people staring, judging you for parking in a space they don't think you deserve.  And I say to those people - live with Fibromyalgia for one week.  Live with it the same way that I do.  Push yourself as hard as I do.  Demand as much from yourself on every level as I do, despite an agony that is 24 hours a day and without mercy.

Live like that cancer patient trying to hide their illness under an ill-fitting wig.  Live like the young soldier who is missing a leg under the camouflage of  a pair of jeans.  Live like anyone who is handicapped but does everything they can to salvage their independence and pride.  Do that and when the week is over, count your blessings that you can park anywhere you want and walk without trouble or pain.  It's a gift you take for granted.

Monday, August 5, 2013

A Great Post by A Fellow Blogger

While looking through the blog roll of blogs that I follow, I came across this post and thought how accurate the list is that this author thought of.  I wholeheartedly agree with all ten things she mentioned.

10 Things About Chronic Illness I Wish I Had Known In The Beginning

Take a moment to click on it and read - it's well worth it!

Gallbladder Surgery

It's been a while since I blogged but a lot happened in that time away from here.

* Multiple visits to the E.R. because of abnormal (for me) pain issues.  They finally found gallstones via ultrasound.

* A doctor appt. with my primary care physician who scheduled various tests to look inside of me.

* A lung scan for pulmonary embolism - came back fine. A biliary scan to see if the gallstones were blocking any bile ducts - nope.

* During the biliary scan, the techs decided to try and get me into surgery that very day because the stones were "rolling around like marbles in there" as they put it.  The concern was that though they were not blocking a bile duct right that moment, they could be at any time.  The next thing I knew, I was talking with the surgeon and then being taken to a surgical suite to be prepped.

While the actual surgery went well, my breathing during it and coming out of anesthesia went sideways.  My blood pressure spiked and my blood oxygen level plummeted while I was under.  I woke up in recovery in excruciating pain, began begging for the morphine button they always give a patient to alleviate that and was told they could give me -nothing- for the pain.

Since when does anyone have surgery and not receive pain medication as they are waking up?  I've never heard of such a thing.  Cutting a person open, sometimes multiple times as in laprascopic surgery and allowing them to feel the intense rush of agony all at once without the benefit of medications to make it a gradual process that one can cope with.

I woke up sucking for air like a fish on land, feeling as if a 500 pound man was standing on my chest, pain stabbing through my chest and abdomen every time I took even a shallow breath, let alone the deep breaths the nurse who sat beside my bed kept demanding that I take and slowly exhale.

I told her (that nurse) that if only they would give me pain meds, I could breathe better because it wouldn't hurt so much to inhale.  She told me that stuff about my blood pressure and my blood oxygen level and words like 'spiking' and 'plummeting' are scary.  When she told me they couldn't risk putting me back to sleep with the pain medications because if my blood oxygen level  lowered any more they would have to take me back to surgery and intubate - I was beyond scared.  I was terrified.  That's when I knew things were bad and I started taking the deepest breaths I could no matter how much it hurt.

I focused on my nurse and saw the worry on her face as she looked at something behind my left shoulder so I turned my head back and looked too, to see the machine registering my blood pressure and oxygen level.  Both were rather awful.  I saw two nurses sitting directly in front of me at the nurses station and saw the concern on their faces as well.  All three nurses were looking between me and that machine like they were waiting for something bad to happen.

Finally, my deep breaths and slow exhales brought the oxygen level up to something they felt was okay enough to allow me out  of recovery and back into my surgical suite.  I did everything possible to make myself better over the next few hours.

I could talk about those things, the facts of those hours, but I'm not going to.  I have thus far only to give a picture of what happened from that factual, medical stand point and what my body went through physically.  Here's what I really want to say in this blog post:

I thought I was going to die.  That's how hard it was to breathe.  I was struggling with every bit of strength I possessed to draw air into my lungs through the terrible pain the act of breathing inflicted on my body.  I begged the nurses and the doctor to admit me into the hospital for the night because I was afraid that if I were not hooked up to machines and being watched constantly, that I would die.

Breathing is something we do without thinking about it but when you have to focus on inhaling precious oxygen because it's not instinctive, it now takes effort and conscious thought - that is life altering.  You can't take breathing for granted anymore.

I've had sad moments since that surgery.  I've been scared since then too.  I want to live - even though the agony of fibromyalgia affects the quality of my life so much, I still choose to live and be present, to enjoy any and every moment I can.

I was alone at the hospital that day.  My husband had taken off work and came to see me but then went home to wait for the phone call that I was out of surgery.  He didn't return until it was time to pick me up so he didn't know what had transpired.  He had no clue how awful it was, how touch-and-go it had been in recovery.  My kids were either working or busy.

There was nobody there to hold my hand, to encourage me to breathe, to say they loved me, to share my fear, to make it better.  There was nobody there who would have cried for me or with me.

Friday, July 5, 2013

Paying For The 4th of July

The 4th of July kicked my butt. I knew it was going to though - I think all of us know that any holiday or event is going to do us in. It doesn't matter if we're hosting a get together or we're going to a party at somebody else's house. We know before it happens that there will be a price to pay.

We hosted a picnic yesterday at our house for some family and friends. I paced myself and rested often - basically, I did everything I could to work -with- the fibromyalgia so just maybe it wouldn't turn into a flare. No such luck.

Even though the party was only from 4 p.m. until 11 p.m., by the time the last guest left, I couldn't decide between ripping my hair out and shrieking the pain or just flopping over in the grass and staying there until next Tuesday.

I've become very sensitive to bright light, flashing light and noise in general so the fireworks gave me a terrible headache.  I was recently diagnosed with migraines so maybe the headache was that rather than the Fibromyalgia.

Why do we do this to ourselves? Because we want to live our lives, have some fun, make memories with our families. We get tired of giving in to this damned disease every day. We fight back and sometimes push too hard.

It will take me all weekend to recover from yesterday. That makes me mad and sad too. It was worth it but I wish we didn't have that terrible choice to make between being present in our lives and the pain that follows.

Wednesday, June 26, 2013

Sunday Morning Coming Down


Songs can give us back a moment.  The melody, a snippet of lyrics can pull back the opaque curtain of time to reveal that memory with a vivid clarity.

As a person ages, they seem to want to listen to those 'oldies' - songs that are the benchmark of their decades.   They soothe us, remind us of better, or at least different times.  They remind us that we have lived.

The tune that I've chosen for today, for this post, was written and recorded a year before I was born but I remember listening to it often as a child.  The writer, Kris Kristofferson, became one of the best songwriters of all time.  The singer, Waylon Jennings, was one of the truest and toughest outlaws that country music ever grudgingly embraced.

But what the song means to me personally is this - My dad has always said that Sundays are the worst day of the week.  He didn't elaborate but I know him and what he meant was this:  There's something inherently lonely and melancholy about a Sunday. 

Those that have their faith, go to church or even just their family close by for picnics & togetherness would disagree with him.  And yet, I have my faith, I have loved ones but I still relate to his sentiment.

There is no other song, in my opinion, that speaks of that feeling better than Sunday Morning Coming Down.  I know that whenever I hear the sad melody and Waylon's God-like voice, I will think of my dad sitting at his kitchen table, music playing in the background, gaze far away as he looks out the window.

Thursday, June 6, 2013

MRI - After.

I'm happy to report that the MRI was not the nightmare that I expected it to be.  That said, I do have a little story to tell about the experience.

I had a plan of attack for the MRI and specifically, claustrophobia.  As I mentioned on the previous post, the doctor had prescribed a sedation medication.  I was going to go to the medical imaging department an hour early, take the pill (or two) and then happily drool down my face until they came to get me. 

I did get to the hospital an hour early.  I checked in.  I found a semi-comfortable looking chair off in a corner so my snoring wouldn't bother anyone.  I had taken the pill just before arriving and pill #2 was on standby.   I was there less than five minutes when the technician came into the waiting room and called my name.

What?  Did I fall asleep for a whole hour and not remember?  No.  They were running early - and who has ever heard of anyone or anything running early in the medical field?

I stammered out, "bu..but.. I just took the sedation medication a few minutes ago.  I'm not sleepy yet."  She didn't seem to care.  What she did care about was they were ahead of schedule so shift my ass into gear and follow along.

Nooooo.  The coffin without the benefit of drugs?  No nice siesta in the donut of horror?  Smelling the hot sick of panic on my breath as it bounced off the machine and smacked me in the face?

I walked very slowly to the room, hoping that each dragging step would give the medication time to work.  No such luck.  This was not a morphine button or a shot of dilaudid in the butt cheek, where within three minutes, you get this huge smile on your face and start singing The Beatles - Yellow Submarine. 

I levered myself onto the cold slab.  Another technician wandered in and both of them hovered around me, getting things ready.  My nervousness must have been evident because they told me they got a new, wider machine.  (Or maybe it's because I'm plump and they wanted to reassure me that I wouldn't get stuck in there like Pooh Bear.)

They suggested I wear a cloth over my eyes so I couldn't see the cage that would come over my face and lock my head into place.  Thank you for the Hannibal Lector visual.

I was finally ready and slowly slid into the hole, concentrating fiercely on slow, even breaths.  I have to admit here and now that the cloth over my eyes was the saving grace.  Not being able to see myself so enclosed was much better.  I had headphones on playing country music and that relaxed me as well.  I did have a bit more arm room in this new machine.

All of those things allowed me to get through the hour long MRI but I was still relieved when they brought me out and said I was done. 

I went home, sat down at my desk to surf the internet and thought about the sedation medication.  Not working at all, never did.  What a joke.  Could have eaten a Tic-Tac.

Ten minutes later, my head lolled backwards and drool began to puddle on my lower lip.  Fabulous.