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 :)

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

My New Reality ©

Hello My friends,

Here comes a poem ~

I have no idea what I am going to write

but here goes...

My new reality.

My new life.

How do you like your life?

Tough times for everyone these days.

Sure are.

My new reality includes many things

needles, chemotherapy, so much medication.

Getting used to side effects

bruises, foggy head, meds to get rid of the foggy head,

forget it ~ I don't even want to go there.

My new reality is one I have to accept

and I hate it. Yup, I said it. The optimist ~

I hate my new reality.

Not only do I have to accept it ~

I have to get used to it, abide by it, obey my body

or else.

I know what will happen if I don't ~

I see my future ~ My mom is in a nursing home

since she was 59. She still doesn't obey her body.

That can't be me. I am 43.

Lost two careers so far. Both companies said I wasn't sick.

So no money either.

At least my old reality was prosperous, so I saved.

Saved for my kids education, for my retirement.

I guess, I saved for my new reality.

My New Reality is sitting on a heating pad all day.

Not able to visit my mom, or friends, for heaven's sake.

Not supposed to do stuff around the house either, or I'll get worse.

But how much can be stripped away

Until I have nothing left. Nothing. No joy.

I pray for others every day, I pray that this process works.

The meds work. They are starting to.

I thought last week was a breakthrough. Nope.

Thank God I have a beautiful home, because I am here all the time.

I feel I limit my families life. Their new reality.

I hope my words help someone not feel alone.

Perhaps helps a loved one understand what we may not be able to express.

I have to get this out or I am afraid I will explode.

Anger is brewing, frustration, am I going to get better?

Is it worth it to take this poison shot every week, feel sick,

go backwards...only to get a little bit better?

God help me, I hope so

I just don't know how to accept

My New Reality.

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

A Prisoner in my own Body ©

How do you become a prisoner in your own body? I am not sure how it happened, but it did. Over time my life as I knew it was slipping away from me And was becoming smaller and smaller. My mind had so much on it ~ so many plans, dreams, goals But my body was struggling to keep up. Even when I was doing my old regular workouts, years ago... My sentence began ~ it was like I was on house arrest. I was so ambitious and took on great careers that were taxing Physically and mentally ~ but I could handle it, for a while ~ If I pushed. Loving my family and my career has always been a balance ~ Constantly striving to learn more and better myself ~ but this sentence was nagging at me, slowing me down. Sometimes stopping me. At first, I would just give up working out ~ then I realized I had to do that to stay well. Parts of my workout ended ~ riding my bike. New ones started. Yoga. Then I had to give up getting up to see my kids off in the morning. This is probrably The strongest sentence the judge has given me. I still can’t forgive myself for that. I enjoyed getting up and making my kids healthy breakfasts everyday ~ Walking or driving them to school. I haven’t been able to that for 7 years. I am embarrased about that. My kids say it’s ok Mom. I handled soccer ok ~ but sometimes I’d have to leave if it got too hot Or if I was too tired. I pushed the judge to go to every game...and there were a lot of them ;) A lot of JOY. Handling my careers ~ I just had to, I was a mom, a provider ~ a tough cookie. I started to not be able to lift my bags ~ my hand was breaking ~ The sentence was stiffening. Then my shoulder - oh my shoulder - I worked on that thing - I yoga’d, pt’d, taped it - To no avail. Took time off of work - and they forced me out - my sentence began. And my shoulder was torn open ~ revealed...but not to the right eyes. My sentence was stiff, tough and painful. Nearly solitary ~ but with visitors. I couldn’t move much. Aha ~ but my brain still works just fine...and NOTHING will stop it. I will re-train, re-Group, re-focus and start a business ~ become a Life Coach! I sure did. Through the pain, the tears, the sling, the tape ~ I became a Certified Life Coach and started my own business. I thought everything would be fine ~ but I couldn’t recover ~ my sentence extended. My mind kept racing, working ~ trying to support my family. Nine months before I could do a full yoga class, but then I could do plank again! I was back. There was opportunity. It was just my shoulder, I mean...that was it...right? Another great opportunity - working everyday ~ coaching hundreds of people, wonderful people - and also developing my Teens Coaching program. I felt great. Or did I. The sentence was lurking behind me...now I felt the handcuffs on each joint ~ It ravaged me. Everyday I worked - my sentence got worse. My career was harder ~ The sentence became solitary. Until one day ~ my Doctor said ~” if you keep working ~ you will do more damage to your body. You can’t work ~ it is not healthy for you.” Day One of Hell. My second career lost ~ but they will be understanding. I am sick. Nope. Replaced. During this time of my sentence ~ all I wanted was the truth ~ The old saying is the truth shall set you free. For me, I needed answers. I needed Doctors that knew, that cared, that searched for what was wrong. I found him. I found them ~ in Boston. Freedom! I am free of my sentence of indeciveness! I have Rheumatoid Arthritis. Whoa. Ok. That sucks. I mean, for real ~ read about it. It ain’t a nice disease. But, I am taking off the cuffs. Am I still a prisoner in my own body? Yes. I know why. Now I have to accept it.