The Invisible Ghost beside me©

Hello my friends!

Wegohealth.com asked me to contribute in some way to Invisible Illness Week.  I wrote this for everyone that is affected by Invisible Illnesses personally, and perhaps to give to family members or friends to help them understand.

Check out www.wegohealth.com  ~ they empower health advocates to help others!  They are on Facebook and Twitter as well...many ways to spread the word! 

Be well, my friends!  Together, we will thrive and live joyful, fulfilling lives. ~ Alicia

Inspiration Idea: Write a poem on what inspires you!

What inspires you most? Alicia (www.meempoweredvsra-alicia.blogspot.com) reached out with a poem she wrote about Invisible Illness and how, looking to God inspires her to keep going. Check out her poem about getting through those hopeless moments with Invisible Illness below. Have you written a poem about Invisible Illness?

(Thanks for sharing your individual inspiration with us, Alicia!)

The Invisible Ghost beside me © by Alicia

Oh Lord, who is this Ghost beside me,

Inside me

Wreaking havoc with my life?

Why am I am the only one you are revealing

This ghost to?

Why Lord is this Ghost invisible for others

To see?

Don’t you know that other’s would understand?

Be more compassionate…more kind.

Lend a hand.

Why does my Ghost have to be invisible to everyone

But me?

Lord, tell me, please!   I need to know.

I am suffering and I don’t understand!

You know how proud those of us who carry this

Weight of the invisible “ghost” are.

We put on a good front.   We try to put on a little

Make up, be beautiful, smile, as our dignity and

Abilities slowly and quickly diminish.

Lord…no one believes us with our Invisible Illnesses.

We lose friends, we lose jobs, careers, family members.

Why Lord, Why?

What is that?   Hmmmm I am listening…

Hmmm OK, I guess I understand, but it still is painful ~ nonetheless.

So when people walk away because they see the

Superficial side of our disease and don’t look deeper,

Lord, you are saying…

They weren’t really there to begin with anyway?!

Wow.!  Tough to digest Lord, as my circle gets smaller and

Smaller and my invisible illness gets more serious.

What’s that?

Oh.  That’s true.   I am blessed.   Even if we have but a handful of true friends

Aren’t we blessed?   As painful as it is to lose family and friends, Lord, due to this

Invisible “ghost” of a disease…I am gaining stronger bonds and truer relationships.

Thanks for the talk Lord…I was beginning to give up hope.

What’s that?   Ok, I won’t lose hope Lord.  I will always trust you.

Taking a little break...

"There is a way to do it better.  Find it."  ~ Thomas Edison

Hello my friends!
It's been a while!
Life has been busy
and I have been reflecting
healing and planning.

Yes, planning.
Does it have anything to do with you?
Sure it does!

With time, creativity
and a great plan ~
I will be putting together
a book for all of us with RA!

YUP!  A book for US!
It will include some of your
favorite blogs ~ ( you all picked them)
and with your permission, perhaps
some of your comments.

When the time comes for this to happen ~
I may get in touch with some of you...
as it is a book for all of us.  

This may not be until 2013/2014 ~
It really takes time!

I'd love to hear your feedback!
Leave me a note at the bottom
let me know if you have a favorite blog!
Perhaps you may have a topic you would like me to cover.

This is going to be about us
from one of us, for us with RA!
I am excited!  Are you?!

Please share your feedback below ~

I'll miss you while I am away, but keep in touch,
and be well.  I will be thinking of all of you often!

Healing hugs,
Alicia

ps...you can always email me at alicia@youempowered.com

Phew...Thank you steroids! I made it!

"A strong woman stands up for herself.  A stronger woman stands up for everyone else."  ~  Author Unknown

Hello my friends!
It has been a month since I wrote
for all of us!
What a crazy, busy, fun,
but sick and painful month it was!

Here is my quick rundown of
what I had going on...
~My daughter graduating College
an hour away~
~Celebrating afterwards
~A three hour speaking engagement
to write, publish and present as
the "Motivational Speaker"
~My cousin had an Art gallery opening
and had two night events
~getting our basement finished (construction)
and decorated, because my in-laws are coming
from England...
~that included shopping, hard tasks for people
like us.  (never a problem in the old days)
~And finally
~ my son graduated High School
and we had a gathering here to celebrate
his accomplishments!  PHEW!  What FUN!

Trust me, there are more things that I
had on my plate, but you get the picture.
Problem was, my friends, I was back in bed
again...sick.  Having a hard time walking (still am),
and just no energy.  How on earth could I
make it to my children's graduations?
Truly, I was petrified to miss them.  I have
friends with RA that have missed big events
like these - hubby's 50th, children's weddings,  etc...
we can't control our bodies.

What was I going to do?  I called all 4 docs -
Rheumy, Podiatrist, Neuro, and PCP...
All agree with my idea of getting on steroids
again.  4th time this year.  
We believe it HAS to be part of my
regimen or I will be up and down ALL.THE.TIME.

I did make it to all.of.the.events!   PHEW!

It was exhausting, painful like never before,
but so worth it!
I used to worry about the side effects of
steroids, esp. the weight!  My partner said
he loves me just the way I am inside.  He is
battling with me.  When you can't
even get out of bed now...you will take quality
over quantity...as my mom used to say.
I had a decent quality of life this month ~
and it was filled with JOY!
and FEAR!

Those with RA know why...I constantly feared
would I be able to make the graduations?
Would I be able to fufill my speaking engagement?
blah, blah, blah.

So, I have decided to add a little something to my
business cards ~ "The Sneaker Speaker!" HA!
Hey, we have to laugh...our lives are tough, so tough.

I am hoping that this blog brings you a little understanding,
a little hug, a little smile, and most of all ~ knowing that
someone else in this big world is walking in your shoes...
I mean sneakers ~ representing us the best I can.

Healing hugs,
Alicia

Learning and growing with RA©

"Adopt the pace of nature: her secret is patience."
Ralph Waldo Emerson
Hello My friends!
I hope this writing finds you well.

Phew, what a lesson RA is in many things:

I have learned that even when you feel like
you will never have a good day again...
With patience and pacing myself...
Oh and my 6th medicine...
I have hope.

I have learned that not everyone supports you:
Especially when you are chronically ill.
This was mind-blowing for someone like me
who trusts everyone....
Many many people walked away from me when I was
really really ill...
The blessing in my life was the ones that stayed beside me.
That was a great blessing.  The love, unconditional love.

I learned and have grown by pacing myself...
something I NEVER knew how to do.
Now I can share my experiences with you...
We can learn together....knowing this is why RA was delivered in my life.
To slow me down and to help others find balance too.
Not only that, but to find joy in my "new normal" life.

Learning to not give up hope some days was difficult!
However, my fellow RA friends and my loved ones picked me up
and carried me...and thank God for my faith.
Living with chronic pain is so impossible to explain to anyone ~
The chronic fatigue and pain is absolutely devastating
Making it difficult, if not impossible to make plans.
Adjusting to this new life, that has been a learning experience.

But, my friends...I am planting seeds, my roots are growing...
I am getting stronger!
At least I am learning to accept and live with my disabilities,
and ... to live within my boundries.
Trust me, this is growth.
I am looking forward to seeing what the rest of my life has
to offer...and what I have to offer the rest of my life.

Healing Hugs,

Alicia