Search This Blog

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!

No comments:

Post a Comment