"Live life on purpose ~ not by accident" ~ Alicia

"When it hurts to look back, and you're scared to look ahead, you can look beside you and your best friend will be there."
-- Author Unknown

"A laugh is a smile that bursts.” ~ Mary H. Waldrip

"Set your goals high and don't be deterred by those who say it is impossible." ~ Steve Fossett

"Our Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless."
Jamie Paolinetti

"A day without laughter ~ is a day wasted"
Charlie Chaplin

"In the end, we will remember not the words of our enemies, but the silence of our friends."
— Martin Luther King Jr.

"Gratitude is an inner smile shared" ~ Alicia

Tuesday, April 17, 2012

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.

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

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,

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.  :)


Mal Wilkinson said...

Great post once again Alicia, thanks for continuing to get the word out there for us xox

Alicia said...

Thanks Mal! Always great to *see* you and hear from you. I am as brutally honest as I can be. This is my way of helping us...sometimes I feel very exposed, but ~ I feel it is so neccesary for EVERYONE to understand, including ourselves...this BAFFLING disease RHEUMATOID ARTHRITIS! Love you. xoxo

Electronic Medical Records said...

That is true...it is good to see the brighter side of things so that one can cope with the hardships.Ill health can really put off some one and make that person go crazy.

Alicia said...

EMR - Nice to see you on our blog! It is a labor of love...I hope you come back and read and share your reflections with us again. ~ alicia