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.  :)

Suit up and show up for life, my friends!

Hello my friends ~
I know it has been a long summer and
I've been away from all of you a lot.
Due to the fact that I was applying
for help, I couldn't even show that I could
type once a day or a week.
Good news is that I finally have security.

Not what I went to school 11 years at night for...
but, "Life Happened" to me.
Now I am learning to deal with it
like a women with dignity and grace.
Throw in a few crying bouts and
thoughts of what if's, and "wish I could..."
and there you have it.

So, many of you have been asking me ~
"what the heck has been going on?"
A LOT!
My doctors and I just also learned that
while I have been on 3 excellent drugs
~the MRI was expected to show that
after one year on a DMARD, a new
Biologic, and Methotrexate, I should
be stable or a little better.

Are you ready for this?
Can you say Erosion ~ Joint destruction
tearing of ligaments ~
As my PCP said, It is a systemic disease,
and if it is eroding your hand, and you have
symptoms in other places, absolutely, you could
have potential joint erosion/ligament tearing
in other places.  (like my feet/hips/shoulders).
JOY.

Her goal is to get me to take advantage of ALL
that Boston Rheumatology has to offer, to keep me
functional and mobile.  

I nearly always wear my sneakers...without laces.
Not even my Naturalizer sandals.  My heels hurt
walking.  So wearing them really help.

I haven't even been able to do yoga.
My dear friend Elizabeth, who is my yoga instructor
said, "come to the studio - even in your sneakers".
Bless her heart.

It is a new day, a new start, new outlook...
I went for a nice walk with my dog and cat today.
It is beautiful out here.   I am doing ok.   Spine is
yucky, but oh well.   Feet are good.   Going to go
to gentle yoga Wednesday and see my old friends.
Can't wait.

At first the news, in black and white, scared the
sh*& out of me.   Now, I am praying that the
infusions and Methotrexate are going to get me
into remission...or at least to be able to do yoga
everyday again (modified to heck!)

So, my friends...life is a journey.   You can piss and
moan about taking a pill, or 27, or taking a shot or
infusion, but at the end of the day...
we are on the right side of the daisies.

What are you grateful for today?
I am grateful for financial security...however small it is.
The ability to reach out to my friends and family again
on FB.
Everyday, knowing I have a choice to suit up and show 
up for life...and take beautiful souls with me on my journey.
So grateful for my family that has really rode this rollercoaster
with me...and even chops the fruit & veggies and waters the flowers!

How about you?

Healing hugs,
Alicia

PS...I really missed you all :)