Finally....Hope! ©

"It’s hard to wait around for something you know may never happen;

but it’s even harder to give up when you know it’s everything you want."

~ Author Unknown

Hello my friends!

My friend Darlene sent me the above quote.

How perfect for me and anyone waiting and hoping

for a cure, relief, or help that is out of our hands.

You know, I am bold, honest and write my heart out here.

What a journey this is.  

One I never saw coming ~ other things, but not RA.

And surely not to affect our family like this.

I told my PCP that I really try to explain to my friends and readers

what it is like to have RA, especially being so young.

He said "Have you ever said it is like having the flu, aches and pains

all over your body, feverish and chills, no energy, just blah...but 

everyday of your life...even on a good day."   My eyes got big ~

He gets it.   Yeah, that's what it is like... on a good day.  Bad days

are worse.  

In order to survive this disease, I needed to change.

I had to slow down.   Slow my mind down, my body down, 

my heart down, my passions down, slow down everything

I planned on doing in my life.   Give up many, many things.

Change the way I live day to day.   Hardly visit anyone ~

that sucks.   What can I do?

Modify my yoga to completely do it probrably like no other 

person on earth does it...without any pressure on my hands

and with sneakers on.   And it works!  It really does.

Guess what happened, my friends?   Well, besides changing

my RA meds to I feel the strongest ones out there for me...

the changes I made, changed my MRI!   YUP.  

You see, my Rheumatoid Arthritis story is told in my MRI's, 

not my bloodwork.   I have sero-negative RA.   That is why 

it took so long to diagnose me and why I go to Boston.

Anyway, last week I went to the doctor, as I spoke about 

in my last blog.   I received the MRI findings in the mail

last night.   All the modifications in my lifestyle, i.e. basically

resting my body when it needed it, which was all.the.time.

working out everyday to a modified way, eating healthy, 

meditating everyday, resting, resting, resting...

The tears in my tendons and ligaments are totally intact now.

WHAT?  YUP.   It is a miracle.   A huge miracle.    

Can you imagine my surprise when I read that?  

The erosions are still there (of course) but no broken bones or 

fractures...so the RA has stabilized. 

WHOO HOO!   HUGS ALL AROUND!

So, my friends, sometimes life hands you a tough, tough time.

You may think you will never get through it, but you will.

You may think you can't change the way you are, but you CAN DO IT!  

One baby step at a time!   

Amazing things can and do happen, 

if you listen to your body and your doctors.   

Now, does this mean I am cured and have all the energy in the 

world and no aches and pains...I Wish.   That is not how this 

nasty disease works.   

I still have a severe case of RA ~ it doesn't go away.  

Medicine induced remissions are rare, but I still sing the Remission song!

I have great hopes for the spring and summer to 

 enjoy time with friends and my family.   We all deserve it.

It's been a long, difficult two years.   

I couldn't have made it without the love and support that my friends

and family have given me...Thank you so much.  Know that

I pray for all of you too and am only a click away!

With a heart full of gratitude!

Healing hugs, 

Alicia

Did I waste six more months trying a new drug? ©

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face."  ~ Eleanor Roosevelt


Hello my friends!


Some of you know that I went to Boston yesterday
and only a couple of you knew that I was so fearful...
of what?
Well, I had wasted a year of my life before - "trying"
Rheumatoid Arthritis medicines...that made me sick ~
killed my immune system and when it came time for
my MRI ~ They failed.  
My disease ate my bones and cartilage and tendons...
while on three medicines.
It was doing this all.over.my.body.


Yikes!


So, then my Doc, one of the best in the world, said ~
we need the "big guns".  Being in Pharma....I researched, 
this Orencia was a great drug.  It killed the immune system
cascade from the top!   I understood it, and had hope 
that it would be the one to help me.


Not only that, I LISTENED to my body, and my doctor and
rested my body and Type A mind.   I am mastering a Chair Yoga
practice and not putting weight on my hands, and I am doing
yoga in sneakers...bless my Yoga instructor Elizabeth for letting 
me go to class in sneakers.   My arches are falling and I have to 
support them.   So, bottom line is, I am doing my part ~ and it is
so hard for me.   BORING.  DULL.  But I am figuring out my new
life because I want to have a long life with my family and friends.
....and a great outcome with these new meds.


So yesterday morning, I woke up crying...
then I started stomping around, pissed off at my lot in life...at the fact
that for the last six months I shoot myself without a clue if it works - 
if it gives me cancer, if it even helps or makes it worse, like the last time.


Basically I was full of ~
FEAR - a four letter word.  Not Faith.  


I was a bumbling wreck, I hate to say...but this is my story, and I want 
to share it because there are many of us with Auto Immune Diseases that 
go through HELL and take Chemo drugs and people say "those aren't chemo" -
yes they are... or "you look great, you can't be that sick" well, I have holes
in my bones.  So I have taken it upon myself to educate my friends and family
and the world of my story...to hope that perhaps you relate and find peace and
life tools.   Maybe you can share it with a loved one to help them understand your situation....


Or, my friends, you can understand me better and we can spend more time
helping each other and finding the joy in our lives.   :)  xoxo


So, many of you are waiting to hear how my appointment went.  I wanted to write it in a blog and just post it for everyone to read!   Perhaps some people have never read my blog and will check out some of my others....check the favorites list.   My heart is in this blog.  Truly.


My Appt:


We arrived in Boston and I went right in to MRI ~ meditation is a great tool I have been using for pain, and I used it in the MRI machine.   They use contrast to see clear as a bell what is going on in my Left hand.   That is my comparison hand from the get-go.   I am sero-negative, meaning - my blood work looks normal, so my RA story is told in MRI's.   


I walked out of my MRI to head to my Rheumy's office and my beautiful daughter was there to support me!   She is in College in Boston.  It was so awesome!   By the time we got to see Dr. D.  he was able to see the MRI...not a detailed report, but he could review it briefly.


My friends, he didn't even wait for us to sit down.   He said "the MRI shows a decrease in inflammation around your first two fingers!"  We were all in shock.  I was grasping for my notepad and to sit down...he was so happy to give us good news.   He said they didn't see any further bone erosion (eating away of the bones - which is the nature of this disease and what they are desperately trying to stop) and that what he saw so far was that he didn't think any erosion have turned to broken bones.   HALLELUJAH!   


You see, my friends, this is so great.   We may have found the drug for me that works to slow the progression of this disease.   This Auto Immune Disease - RA does the most destruction in the first two years and doctors are now trying to hit it hard in the beginning.  If you can't get control of it, you have a greater risk of deformity and disability.   


I already am disabled from this disease and CFIDS and Fibromyalgia...but it sure would be nice to slow this down and improve my quality of life.   Being a Pharma Rep in my prior life ~ I looked up studies last night...I could still have another 2 - 4 months of improvement!   That would be great with my children graduating!   Having the energy to participate in graduations and celebrations!   That would be a priceless gift from God!    


So, to all my friends with RA - Thank you for your support ~ Lyn, my squeaker peeps, Amy, Susan, Elaine, you know you can write to me anytime!  I love your comments and I write back to you.   To my friends, I hope you like my blog if it is your first visit.   Add your email and you'll get a new blog sent to you whenever I write one.  My friends,  I appreciate all of your notes here and on Facebook, your cards, phone calls but most of all your visits...even short ones for some Ginger Tea. Know, my friends, that I am sending a warm thank you hug to each and everyone of you for all of your prayers and love and support.   This is not the life I expected, but it is my new life...and it is getting more hope.


Can I just say that losing my mom, my true supporter and partner in pain, was difficult this year ~ however, when I reached for the phone to call her and tell her the great news yesterday...I looked up to the heavens and thanked her and my friend Carol...cuz' I knew they helped.


Blessings my friends...and never, never give up.  Never!  Oh, and never lose your sense of humor!


Love you all!


Healing hugs, 


Alicia