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Friday, January 25, 2013

A Voice

I have sat down to write several times this week.  Each time, I would get a couple of sentences-or paragraphs in and stop.  I was afraid that the words would be misunderstood.  For complaining, whining or a full-out pity party.  I also knew that I made a promise to be honest.  Honest is tough for me when I am struggling this much.  Because honest makes me cry and feel completely broken.  Weak.

Then I did some catch-up on the computer (a painful task for my hands and fingers these days).  I read a post that caught my attention the other day, but didn't have time to read.  You can read it here too .  I have always been a firm believer that things happen for a reason.  Opportunity is there...if you make the effort to see it.  RA is about to have a voice louder than I, personally, have known it to have, yet.  Rheumatoid Awareness Day, February 2, 2013!

As you know, I thought that this blog was going to be based on something entirely different.  Weight loss.  Well, Rheumatoid Arthritis has the staring roll and weight-loss, is a special guest star.  For now.  

Being diagnosed with RA has been life-altering in more ways than even I can imagine.  So, to ask others to grasp it, when I can't (yet), is somewhat unfair.  But we all need to.  When it comes down to it, the pain is something I deal with much better than the overall feeling of being misunderstood for something I am not.  Or ever have been.  Weak.

I am so excited to have access to so much information. Information, I feel, is important to make others aware of what RA means to many.  To bring to light the truths of the misconceptions.  To call BS on the ads that make it seem as though RA patients are living a "normal" life with RA when on the pharmaceuticals being advertised.  Sure, they work to help minimize damage and some do increase quality of daily living.  But they don't always work, for many.  

Here's the thing,  RA RD (Rheumatoid Disease) has many factors of any disease/condition.  It is life-altering.  It is pain. Fevers.  Flu-like symptoms.  It is deformation.  It is feeling hopeless (at times), sadness, tears, worry, exhaustion and so much more, including...invisible to most.  It's doctor appointments, blood work, scans, x-rays, pill boxes, side effects.  It breaks you down.  But, because RD is so misunderstood, none of that matters, to most.  Because we don't hear about what RD really is.  

For me, lately, RD is pain.  And tears.  Frustration.  Lies.  Lies. Lies.  Because, what I do when I am out, is LIE.  I feel like crap, but won't tell you.  Because [I feel] everyone is looking at me and wondering why I am not involved as much, doing as much, smiling as much.  And why wouldn't you? Because, even if I reminded/told you that I have RD and am having a rough time (flare), would you really know what that means for me?  Do you know that I walk over objects on the floor because I can't bend to pick them up...and that when my children see me bend over, or try, they say, "I am sorry you had to bend over Mommy."  Do you know that there is little that I can accomplish from start to finish without help?  Do you know that I am struggling with a new "normal" of disarray?  Not fair or easy when you are an organized soul who finds peace with structure and order.  I drink my coffee black sometimes, because I can't open the creamer/milk container.  Even if someone is here, I won't ask.  I save my requests for the bigger things looming in my mind.  And the pain.  Pain that makes you cry out in your sleep.  I don't even know how to expand on the pain topic.  Just know that I work through a great deal of it.  Right now, it's pretty bad.  I can't get my infusion because I have been sick and on roundS of antibiotics.  

RD is feeling left behind.  Our house was under siege by the flu.  Twice. Little, by little, they all (thankfully) recovered and are moving forward and resuming normal activities.  Me.  I am still stuck in 
 flu-like RD limbo.  RD is mourning your old life and having to pick yourself up and find a new normal...again and again.  Because, just as you think you've got it...FLARE!!  And you pick yourself up and start all over again.  It gets exhausting.  But I do it.  Every time.

Never assume.  Don't judge.  Learn.  Read.  Understand.  Be supportive.

I need to find out more.  I need to help spread the word.  I would love to be instrumental in bringing this awareness to many.  I need to connect with others like me.  To find solutions.  Break barriers.  To give and find strength and inspiration in the many that are struggling with all the same issues.  I want information and I want to inform.  I want awareness.

Yesterday, I promised my doctor that I would be patient. He tells me that this summer, I could see a difference.  We will see.  In the meantime. I intend to make a difference.

Rheumatoid Awareness Day is a big deal.  It is a voice.  A voice I really need to hear.

Thank you, Kelly Young for all you, somehow, manage to do.  This is a big deal!

Saturday, January 19, 2013


Dear Emily, Ethan & Alec,

I am told that I am very talented when it comes to expressing myself in words.  I sure hope so.  Because I want this to be something you someday come across and be able to read it and feel so very deeply each and every heartfelt expressed word.

I love you. To the moon and back.  Infinity.  With everything I am and have ever hoped to be. I hope you are never able to fully comprehend my love for each one of you.  Because there is something so magical and great about endless.  Infinity.  When I imagine the universe and the fact that it is...endless, I am in awe.  That is how I want you to feel about my love for you.  I love you...But wait! There's more...But wait!  There's more... Love! More than you can ever comprehend.

Like every parent, I take you for granted.  I don't always take the time to listen, look and talk to you as much as I would like. And every night I go to bed with regret.  Regret that another day has passed and I didn't _______.  But let's be real. There are three of you :0)   I am one mama.  It is, in part, because of these regrets that I have always been terrified of you growing up, older and someday, out.

These days and those behind us are what I live for.  You need me.  You love me unconditionally.  I am  your hero and for the most part can do no wrong.  I don't believe I have disappointed you (at least not greatly), yet. And if you have disappointed me, it's been a G-rated one that we overcame with a simple kiss and "I love you". You are tiny, sweet and full of the innocence God intended you to have.  Each day you learn something new and are genuinely delighted and/or inspired by it.  I can snuggle with you and each one of you still allow me to kiss and hug you in front of the bus every day.  In fact, you want me too.  You giggle like the beautiful children you are.  Thank you.  I love the sound of your laughter.  And so much more.  Your growing up...scares me.  And if I had one wish, it would be that we could all stay here, in this moment, forever.  At least, that was my wish.  Until yesterday.

Terrible things happen all around us all the time.  For the most part, most of us are blissfully unaware.  However, in the past month, the world was aware when 20 small children were taken, tragically, too soon and left holes in the hearts of many.  Yesterday, I heard of another hole left. I can't imagine.  I can't stop looking at you, Alec, and wonder(they were all about your age. Six.)...  I try to shake it off. I can't help but wonder what these parents and family must be feeling.  Gone.  Just like that.  And yet, the world around moves forward.  The minutes turn into hours, days, weeks, etc. For many, they are stuck in that one moment.  That moment where, just before everything was OK. And then it wasn't.  These parents will never get tomorrow with their babies.  They are blessed with the memories of the days lived out and have to be content with the time they had.  Tomorrow, for them, will be different from now on.  I bet they would give anything to live with the pain I have inflicted on myself.  The pain of watching you all grow.  The blessing.

My gift to you, in honor of all those little ones, is to watch you grow. And enjoy every single second.   Without wishing you could just stay this little forever.  Because some are not fortunate enough to have tomorrow and are forever 12, 10 and 6 in the hearts and minds of loved ones.  Because the pain of imagining you never going onto middle school, high school and so on as a result of some unknown tragedy is unimaginable.  And because I love you so much.

Nobody can ever predict what the future holds.  And while I have always loved you to the best of my ability, I do feel I am showing you a bit of "infinity" by getting over my fear of you someday not needing me, first.  Grow babies.  In twelve years, I have laughed, smiled and loved harder than I have in my entire (almost 40 years of) life.  You have allowed me to grow as a person more that I could have ever imagined and blessed me with gifts I struggle to believe I deserve.

Grow.  Show me what you've got.  Learn.  Live.  Love.  Be loved.  And know, that nothing has ever brought me more joy than watching you grow.  I have a feeling the best is yet to come.

I love you.  Infinity X Infinity.  Forever.

Have the bestest day, ever.