Gordon Ramsay's the man!

I love Gordon Ramsey!  I like to live vicariously through him.  He gets to say whatever he wants to say and I totally envy that!  He never has to hold his tongue and that must be amazing!

Oh, to be able to say whatever pops into my head without consequences!  Oh, Gordon Ramsay, I love you!

A love note to words

Words are magical.  Words conjure feelings.  Words can feel like an enchantment and words can feel like a malediction. 

Words can be tortuous when they are raw and visceral.  There are times when words cannot be delivered in any other manner.  Words can be polished and poised, full of confidence and as a result, cultivating a feeling of assurance in others.

They are heartrending at times.   The agony in the words can thicken the very air that we breathe with bitter sorrow and helplessness.    They are inspiring at other times, giving hope to those receiving those words.  We can feel motivated and supported, we can feel joyful and we can feel loved.

Words have the potential to disarm and placate but the potential also exists for words to incense and enrage.

Words can provide a feeling of connectedness and unity among those who share them but words left unsaid or unwritten or words full of apathy and indifference can create a schism which could prove to vast to navigate.

I can think of no better way to sum up how I feel about words than this:  I love words.  I know that "love" seems like a broad word with many different interpretations but it fits how I feel.  It's not fancy and the word "love" is thrown around so often that maybe it loses some of the meaning but it's the perfect word.



 

Love is such a challenging word to define

I was speaking with my Olivia tonight and it struck me that she is love for me!  I could never love another person like I love her.  She has wonderful qualities (some nature and some are nurture) and she isn't afraid to try new things even if it's a challenging goal.  I love that about her!

I love the way that she can melt and turn back into the kid that thought that mom had good answers.  She has a kind heart and a lot of courage.  I love that she's talking to me more and that gives me as much joy as she gets from talking to me.  

I love my daughter without abandon!  Sometimes it all I can do to not just run up and hug her because she is so loved and I always want her to know that!

She blesses me.

Thank you, Steve!

I mean that.  I really do!  I just want you to know that I really appreciate all that you have given me, done for me and the ways that you've always supported me when I needed it most.  I also want to thank you for reminding me that I need to be willing to put my needs first every now and then and I love you for that! 

Happy anniversary, my love!  I love you!

I married a man who redefined love in a healthy way!

What can I say?  Steve is the love of my life and of that I am sure!  I don't have even a shred of doubt as far as that's concerned.  He has loved me completely without holding back and  that restores my faith that real, true, deeply rooted and unconditional love exists and that I get to experience it from him!  I'll keep it real...I'm not the same easy to love person that I used to be since I got my plethora of diagnoses.  That really can be a game changer for many couples.  I sometimes think that he might have a better shot with a woman who isn't "broken" but then the thought occurs to me that he stays because he loves me and it doesn't feel like he stays with me out of some sense of obligation to me.  I will always be grateful to him for still finding me worthy of love despite all of my flaws.  

He has been a trooper all the way through my sickness and has made it his priority to shelter me as much as he can.  He is home to me.  It might sound a bit hokey, but there it is.  He is my rock when I find that I just can't keep my chin up and be strong.  He never hesitates to step in and become my wall when I need that extra protection.  I'll admit, I'm much more fragile at times than I would ever want to let anyone know but with Steve, I can break down and allow myself to be fragile and vulnerable and I know that what I'll get from him is love and support.  Most men might be tempted to either shove me and my SLE & friends baggage out the door or just completely ignore my needs, but not Steve.  Steve is the best man that I know. 

The more time that I spend with him, the more I say to myself "Whoa!  This guy is the best guy ever!" and it comes from the heart.  From the first time that I met him, I knew that he was something different and that was most definitely a change that I wanted to make!  I find more things to love about him every single day and somehow that helps me feel better on an emotional level.  

He's a blessing to me.  A gift.  He lets me break down when I need to and he's my biggest supporter.  He knows what I need sometimes without even asking.  I love these things about him.  He makes me laugh even if I might feel like crying and he really talks to me!  I don't mean just superficial talk that some people have, but deep conversations that make us think.  Actually, I feel like being his wife makes me a little smarter! 

I wish that there were more people like my husband in the world because he is phenomenal and every person should have a mate that makes them feel as loved as Steve makes me feel.  I didn't really know what love was until I met him and the feelings that I have for him are so much stronger than anything that I've ever felt for people that I'd dated in the past.  When we are just sitting around talking to each other, sometimes I get so overwhelmed with how much love that I have for him that I feel like my heart might just grow out of my chest!!!

He's worthy of love!!!

Her Nature

This is something that I wrote for my daughter whom I believe will be whatever she wants to be and she'll be brilliant and gorgeous no matter what path she takes. 

Her Nature

We are all a product of nature.  I know mine...but what of hers?  What if I could find her in nature?  What would I find?

Were she like a lily what would her world look like?  If she were a lily, would she have the illusion of radiance and life but the reality of fading away.  A living Death?  You know, from a distance, the roadside Tiger lilies paint a bright picture but upon closer inspection, Life bleeds from those lilies that draw the eye from a distance.  Like lilies, would she have that natural beauty that is undeniable there but very difficult to put your finger on what it is that makes her so fetching?  Stargazer lilies and Calla lilies remain some of the most beautiful objects that I've ever laid eyes on but I can't explain why.

If she were a dandelion, would she have the sheer will to exist wherever she pleases despite knowing that someone, somewhere is looking to mow her down again and again.  Could she continue to rise knowing that the harsh blades that have cut her down so many times before lurk and wait to repeat the process?  Would she see herself the way that children see dandelions?  Beautiful and worthy of being admired.  Much too soon the dandelion stops being a thing of beauty and then becomes nothing more than a weed. 

Would she be a rose?  Beauty unmatched by anything other that the pain attached with getting too close to those thorns.  A rose can't concern herself with anything outside of her own beauty and a rose makes no apologies for that.  Roses captivate us because they demand our admiration and attention and nothing less than that would do.  There's a cruel poetry in a rose's vanity and a valuable lesson in having a healthy dose of self love.  There is also the priceless lesson in learning to look outside of one's self and loving others as well as loving yourself. 

Could she bear the burden that trees carry?    Could she carry the heaviness of her Winter without breaking?  Could she bend without breaking in the same fashion as the branches of the Weeping Willow or would snap like the brittle branches of a tree whose time has passed.  The willow has a strength that might go unnoticed by most but for those who see that strength, we can't help but respect that quiet strength.  She may find that inner strength is the the only thread that she'll have to hold on to sometimes in life and that strength can be enough to keep her from breaking.

If she were a daisy, simple yet stunning in color and design, would that be enough for her?  Would she feel the need to conform to the grocery store daisies, the ones that someone deemed "not pretty enough" and then doused in colors that the daisies were never meant to wear?  Would she feel "less than" if she didn't comform?  Would she take joy in what she is and celebrate it as opposed to trying to erase it.  The grocery store daisies show no resemblence to what they really are and that's a tragedy.

She could be the Lilac bush and have the ability to change the world with just a whisper of a breeze.  She could remind us of a time when we felt happier and our hearts were lighter.  Even now I recognize this in her even if she doesn't see it.  She's my Lilac bush and she doesn't even have to try!

Perhaps she's the field of wildflowers that carry the unknown until it's time for us to know.  She'd blossom in ways that we could never predict.  She'd be the unsolvable puzzle.  An absolute mystery and that would draw me in.  She would be light and dark simultaneously.  The beauty of the finished product and the sense of wonder that she'd evoke would be juxtaposed with the dark, dense, and unknown earth's ability to produce fear in the hearts of those who don't like the dark.  Beauty and light in fragmented pieces thrown together with shards of  unseen ugliness that we might fear lurks beneath the earth. And let's not forget the dark.  Sometimes that scares us the most.  I like to think that the fear can be transformed into a lesson about recognizing that light and dark need each other to exist and the dark can be a time and a place to retreat and when the time is right, just grow!  That darkness serves as a clean slate and the opportunity to begin again.  It's a way to acknowledge where we've come from and what we aim to do in life.  Grow!  Regroup and grow!

She'll be whatever she wants to be when it's all said and done.  Sometimes she'll find herself being whatever she needs to be out of self preservation and when her season changes, she will she!  She'll take many forms because that's how she'll know who she is.  She'll learn to have the dandelion's resilience when she needs to.  She'll learn to be the tree and bend without breaking when she finds herself needing that extra strength.  She'll be the rose who will be beautiful and know that she's beautiful without apology.  She'll be the daisy who knows that she needs only to be concerned with what makes her happy and with any luck, maybe she'll rescue some of the grocery store painted daisies who worry too much about pleasing others.  She'll be those wildflowers and she'll be the earth that it all comes from.  She'll be that Lilac bush who'll be that whisper on the breeze that helps lift up those who feel like they have no joy left.  She'll be someone's whisper on a breeze that carries with it the memories of good times and hope for better days ahead. 

She'll wilt and fade away and her season willl soon become an afterthought until it's time for her to be born again into yet another season.  She'll be everything at some point in time and then she'll change.  It's her nature.

I really do love that girl of mine!

How can a choice which should be easy be so agonizing?

I keep going back and forth over the opportunity to be a part of the "Illuminate" clinical studies that people who have diagnosed SLE can take part in.  It shouldn't be so hard because I've always maintained that I want to take every chance that I can to get better.  I just didn't realize that a study of this magnitude could happen so quickly and that's scaring me more that I thought possible. 

Maybe my fear is stemming from the absolute certainty that for the time that the clinical studies and trials are being held that my life will be altered.  I'm frightened of that because I take comfort in having as much consistency in my life as is humanly possible.  Part of the fear for me is also that I'm afraid of getting my hopes up, believing that it might just work for me, and then finding out that I can't be helped by the clinical trial results.  I'm also not too keen on more doctor apartments, additional blood work in addition to my regular blood work.  I know that I would feel anxious over whether I'm recieving the active course of drug therapy or if I'm on the placebo.  Then there's the possibility of having to travel to take part in the clinical studies and that further complicates the situation.  It's all so overwhelming to me right now.

On a positive note, at least the time, money and effort is being put toward lupus which is phenomenal!  I would love to be a part of the clinical trials because the need for progress when it comes to not just lupus, but other autoimmune diseases. 

I'm a candidate for the study and I even have the name of the doctor and facility where the clinical studies are going to take place.  Again, I'm scared.  I want to do the study, but there are too many objects that are standing in my way.  I really want to do something that will matter and will help further the clinical studies make some serious headway. 

I wish that I knew the path to take.

I watched "The Green Mile" this weekend

It really spoke to me!  As strange as it might seem, I watched that movie and I thought to myself that if I could take Sadie's (our dog) sickness away, I would do it without hesitating.  She is so sick and sad, she can't tell us how much she hurts and she has to feel all of the pain on her own.  I would never want that for her.  I love her more than I ever thought that I could love a pet and the idea of her suffering is terrible.  I really love my dog!  I love her enough to take her pain away.

It's different for me.  I know how to make sense of what is going on in my body and I can talk to people about it and cry about it and rage about it.  That makes it easier.  I know that I don't have to handle it all on my own and that I have people who love me enough to be a shoulder to lean on when I feel like I can't do it on my own.  Sadie doesn't have that and she never will.  Even when I keep my pain to myself, at least I can make sense of it in my head and that seems to help me out.  I convince myself that it won't last forever and that medical advances are happening all of the time and that gives me a small measure of comfort.  Sadie doesn't understand that and I have to imagine that because she doesn't get what's happening to her body, that it probably makes her pain so much worse. 

It's not even a question for me.  If I had John Coffey's power to use to take away my Sadie's agony, I would do it.  She is a part of my family and I love her so very much.  She is powerless to help herself and I can think of no better gift to give her than to ease her pain, if only I could.

I know that this is a bit of an odd blog, but it's been on my mind.