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 :)

Life Happened...now what? Choices: 4: ~ Communicate with Friends or Isolate©

"So long as we are loved by others I should say that we are almost indispensable;
and no man is useless while he has a friend."  ~  Robert Louis Stevenson

My friends, as I continue to the top 10 of Life Happened, now what...©
This one may be the hardest one.

One thing I have read about and heard over and over is that RA
is a universally isolating disease.   Whoa.   It doesn't discriminate.
You could've been a vibrant, successful, bubbly, outgoing, high heel
wearing woman...and bam.   Can't get out anymore.   Too embarrassed
to say or do anything about it...really.  That would describe me pretty well.

Perhaps you have tried, like I have, to communicate in round-about ways...

But if we are going to THRIVE, yes, THRIVE, my friends...we have
to get over ourselves.   Our fears.   Stop letting RA rule our lives.
I don't know about you, but Rheumatoid Arthritis has been running my 
LIFE.

We need to tell our friends we need help, and be specific.
For instance, I had a friend over yesterday...I was going to Goodwill and
getting "flatter heels" and more comfortable, yet stylish shoes...before I
give away my beautiful heels...(like 50 of them....I digress).
Well, I gave my friend some shoes...I showed her my new shoes and old
ones.   One pair I couldn't wear because they had laces.    She said "Oh my God,
I had no idea your RA was that bad."

Communication.

Now, I can tie my shoes, somedays...but I don't get sneakers or shoes with laces
anymore.
I love to hang with friends...but for now, it is so much easier for me to have friends
here.
Expressing that to my friends.  Helping them understand is crucial for me to not isolate.
I'd love to have friends come over and go grocery shopping and maybe make
a fruit salad together...chill out and enjoy eating it.  
But it is so hard to ask for help.
Yes, I have family, but we all know ~ they carry a lot of the burden...if we could do
some of those things with friends, it could be fun at the same time.  
I don't know about you, but as soon as I am with friends, I turn into a goofball!  
Isn't that what makes life with friends grand?!
What are we so afraid of?  

When we stop getting the invites, it hurts us deeply...we are not cripples,
we are just adjusting to a life that WE DIDN'T ASK FOR....
but we are going to THRIVE...my friends,  WE ARE.
I don't know about you, but fear of not being who I was ~ and admitting that to
myself and others is EXACTLY why it is easier to isolate...

However...we are on this earth for a very short time...and I don't need to tell you
that people with RA... well, I won't finish that sentence...you know what I mean ~
every day is precious.

Let's promise each other...and I mean this
No more isolating  ~
Baby steps, my friends...baby steps ~
and we will thrive and get our life back.
Reach out today and tell a good friend that you want to get together
and what your limitations are ~ be honest
begin your new journey of thriving with RA ~

Share your success stories ~
We all need them to help us
with this challenging disease...
Never forget my friends,
WE are stronger than our disease!

Healing hugs,
Alicia

To take the medicine or not... ©

"When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn."  ~Harriet Beecher Stowe


Hello my friends!
The snow is gently falling 
as I am writing to you.
A really nice background
for me...squirrels and birds
running and flying
scurrying to get food
staying warm.
I am pretty cozy here on my heating pad.


This month has been a doozy getting 
to know my dear friend rheumy, 
my disease.    When I got an infection and
I had to get off my RA meds, I knew it would be an 
adjustment, but I wasn't quite sure how much
of one it would be.   


Oh, my friends, when I was getting better and I could
get back on an injectable med, I chose the Enbrel
first ~ hopeful that I won't ever have to go on 
Methotrexate injections again.   That medicine just
makes me sick...it is harsh.
But, hey, my body is attacking itself...eroding my 
joints and tendons if I don't stop it.   Even if I do try, 
who knows how long it will be before I need joint
replacements, or have deformities...we just don't know.


So, I go to Boston tomorrow, and let me tell you, my 
body is stiff, and I have swollen joints that have not 
been swollen before.   I am now waking up to shooting 
pain down my arms from my shoulders.   My hands in the
morning...well, I am drinking out of a wine glass - it is the
easiest glass to hold my water in.    I now bring a muffin up into my 
"sanctuary" the night before and my love brings me 
fresh water and a Diet Coke in the morning because going 
down stairs first thing in the morning is becoming more and more 
difficult.   I am almost ripping out our bannister.    Oh, 
the pain is not good...the stiffness sucks.    But the fatigue
is the worse.   I am sick of being a prisoner in my house.
Especially now ~ it is too snowy to walk on my healing trail.


I guess, my reality is most likely that I am going to have to 
go back on the Methotrexate injection again...it is like injecting
the flu in my body every week.   Perhaps, now, with 
my other docs all working together, we can get the pain and fatigue
under control and I can get a better quality of life.   


Every single Study I have read or Doctor I have seen
do a presentation on RA has said that what RA does is
universally takes away a persons Quality of Life.   With
pain and fatigue there is a feeling of isolation and it is so 
hard to explain to others that most people just become very
alone and isolated.    Especially if you have lost your career, 
as I did.   And were, and are a very social person, but don't
have the energy right now...to be, well, yourself.


So, when we are in these conflicting situations, what choices do 
we have?   Take the harsh meds?    Yup, take the medicine.   
All of my meds have side effects...some worse than my disease...
but when your disease is so bad, and you suffer so much, 
you choose Quality of Life.   We have but one life to live.   
As much as I don't want to add that medicine back to my 
cocktails, I do believe it was helping me.   


So, I will let you know, but I am gathering up my courage
to do what I have to do, even if I hate doing it every single
week.   The other option is worse.   I am quickly turning into
the "tin girl" ~ needing some WD ~ 40.   That's no way to live
either.   


But, I am not a quitter, oh no I am not.   I still do my yoga...
and modify the heck out of it.  :)  ok, sometimes it is just 
stretching, but I do something every single day.   Resting, 
well, my friends, I am proud to say that, I am learning how 
to do that too.    Watching entire movies with my kids, 
with friends, snuggling with my love, The Brit.   Life is ok.
Is it what I planned, no.   Am I scared?   Yes.  But, I am 
gathering more faith, turning my life and fear over, bit by 
bit.    I have to.   


So, as I finish up this blog, my dog is snuggled up
beside me, of course catching some of the heat from my 
heating pad!   My son is home and we are going to study 
for finals.   My daughter is starting her second semester of
her junior year of college and The Brit and I are reading a 
book together tonight.   Life isn't too bad.   I will call my
mom and a friend to read this and see if it is "blog worthy"
and get the ok before I hit "publish" :)   I am surrounded 
by love during this scary time...what more can I ask for.


Healing hugs, 
Alicia

What RA has given ~ what has it taken away? ©

My friends ~ by now you are getting to know me a little.

Poems just flow from my fingers, so here goes...

one for my friends and family.

RA has given me answers as to why I am so sick

and taken away the questions as to what is so wrong

RA has given me a needle to take

but has taken away my fear to do it myself

RA has given me a world that is very small

and yet has taken away the boundries of communication all around the globe

Rheumatoid Arthritis has forced me to take care of myself

and yet, two careers were taken while listening to my doctor

RA has given me time on my hands

but has taken away my full ability to use them

RA has deepened friendships that take the time to understand

and also taken away family and friends that didn't.

RA has given me humility

and taken away my pride

RA has given me lots of time with ice on my shoulder and heat on my back

and taken away the ability to travel freely and joyfully without pain

RA has given me perspective, hope, new friends, deeper love

and taken away ~ little by little ~ my fear of asking for help.

Healing hugs,

Alicia