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

You can't win a Battle without support troops!©

"If all my friends were to jump off a bridge, I wouldn't follow.  I'd be at the bottom to catch them when they fall." Author Unknown

Hello my friends ~ how are you today?

Life gives us all struggles
battles we must fight
we can only pray that when our
battle comes ~
The comrades we have built up
over our lives ...
will stand beside us and fight
and battle with us...
Battling RA ~ we have a lifelong fight ~

With our family and friends beside us...
we can win the battle.
Without our comrades, we don't stand much
of a chance.
Like a war ~ when you lose your mates ~
your support thins out...
your strength wanes...
you are vulnerable to your aggressor.

Our aggressor wants us wounded...
unable to function ~
WEAK.
RA would love to take my ability to walk away...
I am fighting that every second...
but I am losing my strength...
I have already fought the battles 
for my hands, my shoulders, my energy...
my career.

Nevermind...losing my best friend and support ~
my mom...

At the end of your War, I'll be next to you...
Are you willing to fight with me?
I need comrades willing to carry RPG's, Machine guns,
and just some canteens of water once in a while...
and go for walks to keep the bad guys away.

You see RA doesn't like you healthy,
so let's do what we can to battle that...
Chair yoga, walking, visiting, painting...
It loves to take away your social life...
and healthy things you love to do.

Too many Warriors don't know how
to handle
sick warriors ~
so they stay away.

Don't.
The battles are hard enough.
Alone.

I will be a warrior for your War.
Won't you be there for mine?

Healing hugs,
Alicia

For all of my friends with invisible illnesses that feel alone because they are left alone ~ abandoned, their diseases and pain diminished.   I hope I can be a voice for all of us...if there is anything I can do, it is write, for all of us, from my heart.  Build your group of Warriors, my friends!

A FLARE? I've had one for two years!©

"A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty."
Winston Churchill


Hello my friends.
Can I just tell you that the last few months
have been growing pains for me, my family
and my physicians...my podiatrist, my pcp,
my Rheumatologist and others.
Why?

After 5-6 strong medications over 2 years, I finally have
one that is working on helping slow the progression
of the disease.
GREAT - right? Sure thing!

However, I was living with the worse pain ever while
getting that "good news" from Boston...
and now Prednisone (a strong steroid) is now
a drug that is part of my "cocktail" from my pcp.
We had to get my inflammation down.
My Boston Rheumy never wanted to use
steroids on me...last week he rx'd them for my feet.

Know why?  Because of a flare.  A flare!
Inflammation.  Pain.  Inability to walk normal...
or sleep without waking up arching my back.
The good news is ... although this pain is everyday ~
I feel SO MUCH better than I did!

Now, my job and the role of all of my Physician Team is
to analyze this RA/Fibro/CFS ... and figure out how
I can actually LIVE now.   And Thrive...as I have told all
of you we will do!

Hope!  We have slowed the erosion...now we just need to learn
about it...and pace myself.  

But pain, inflammation other problems continue.
I have carpal tunnel in my hands and tarsal tunnel in my feet!
That is why I have a very difficult time walking...and why
I am on steroids to reduce the inflammation.
I see the podiatrist Friday ~ hopefully no surgery.

My friends...I am meditating a lot lately...A LOT!
There is a word in meditation....equanimity ~
essentially it means remaining steady when life is not.

Now that I have a strong biologic that is working ~
I need to stay centered and steady with my emotions,
as I was feeling hopeful and then BAM ~
I thought, oh no
I will never get better.

Not good.   That isn't me, but RA is a damn tough disease.
It wears on you.

So, my friends, my readers...thank you for joining me on my journey
and sharing your experiences too!   The last thing that I want to say
is that for those friends or family that doubt your friend/family member
is really sick ~ if there is one thing we really need, besides a cure...
is unconditional love and support.   Otherwise, it makes our journey so much
tougher.

When you have a few people in your life you can count
on...it helps you get well.  (see "The difference between Illness and Wellness is WE").

Healing hugs,

Alicia
ps...for those of you who have figured your RA out ~ somewhat...add your thoughts ~ here or on FB.  We can all use any help.  :)

Looking in the rear view mirror©

Hey my friends - this is a blog/poem I wrote last August...I really
like it.  I hope you do too! ~ alicia

Hello my fellow RA pals...
friends with pain
or just plain 'ol friends :)

Here I am
Looking in the rear view mirror
what do I see?

I see someone running
always running, as a kid
running from a tough home~

As I grew
I was running from college classes
to work to pay bills
running, running, running ~

Getting married, having kids,
joyful running around the yard,
the house, to college and work
never finding the right balance~

I was sick back then too...
I've always been sick,
if I take an honest look back
in my mirror.

But, I had two kids to raise
to be a good example to
and prepare them for college
more running.
Running.out.of. breath.

Life changes happened~
not easy ones, for anyone,
but as a single mom,
you really have to hit the accelerator.
I was the only one planning for college.

My body was screaming at me
here and there, but I had to ignore it.
"Oh no you didn't"...my body said.
"Oh yes I did"...said I to my body.

Looking back now,
would'a, could'a, should'a's
don't help me a bit~
not one little bit.

But they might help you.
If you are young enough to
get the message...

Listen to your body
it whispers to you....
"slow down"

Then it tells you
"you better stop today!"

Then if you still don't listen
you can be out of luck...
as I look in the rear view mirror...
I see many whispers

But I chose to ignore them...
Now I must suffer the consequences...

Don't make the same mistake as I.
Hear the whispers...make the changes.
We only get one shot at this thing called
LIFE.

Guess what?
When you slow down,
you can enjoy every second of it.
Even with pain.
You get to choose
What you see in your rear view mirror.

Healing hugs,
Alicia