"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

Wednesday, January 19, 2011

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

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 said...

Update my friends:
Well, my doc wants to give my immune system some time to build up...so, no Methotrexate for 3 weeks ~ and then we are going to start on it slow. That, to me, is the best of all worlds. I knew I needed it, but I am grateful he is being cautious with my immune system too. We also ran all my blood work, so some will depend on how my inflammatory markers are - he may want to start early if my bloodwork isn't good. It is a puzzle. Glad I have the world's best working with me. :) Healing hugs... ~ Alicia

yvonne said...

Bless you Alicia for your posts on RA. My daughter is 8 and was recently diagnosed with JRA; she takes weekly injections of methotrexate along with prednisone & timolol for her eyes. I wonder what the long term effects of all this medication will be for in the years to come. I am afraid the meds may harm her in some way down the line. Thank you for your encouraging words and your strong sprirt. Good luck to you -- Yvonne Marple

Alicia said...

What courage your daughter must have! Kids are so resilient aren't they!? You know, our doctors know what they are doing, or we wouldn't trust them...right? So, we must trust and hope that long term...we will be ok. Most importantly Yvonne, we have today, right?! I pray that your daughter's medications are gentle on her and work quickly to give her quality of life! Be strong...as a mom, I can't imagine how strong you must have to be. Healing and supportive hugs. ~ alicia

Anonymous said...

I am struggling with RA also and am on MTX and Humira. The MTX makes me so sick for around 48 hours its like I have the FLU. I am struggling with the Will to continue this Drug. I want to stop it I don't want to spend 2 days a weeks so sick I miss being apart of my toddlers life.

Alicia said...

Thank you for your honest description of what it is like to take these meds. I would describe taking Mtx as injecting the flu every week. My Rheumy just took me off of it, as I was not tolerating it well after almost 1 year. Be honest with your doctors, my friend. Having a toddler and RA...Bless you. I am grateful my kids are older, because I would've missed everything.
Keep the hope! I am trying Arava. There are many choices. ~ alicia

Alicia said...

Update my friends:
Considering this is one of your favorite posts...and I know why, well, because we all take THE medicine we have to take to move. It takes courage to battle this disease - to take medicine, to not.
Right now, I decided not to get on Arava either. We will see how stiff I get now that I am off Mtx. I will tell you that I feel so much better flu-ish, brain fog, and it seemed like the mtx took my joy. Just my experience.
So that is my update. Going with 1 DMARD and 1 Biologic plus a million other meds...just to survive and thrive, my friends...and thrive we will, and do!
Be well, and strong! ~ a

Sherry said...

Alicia you always seem to say things just as I too am feeling. I'm very blessed to still be working and not crippled but although I take plaquenil, MTX and Humira I still have lots of pain and aching. I love your blog!!

Alicia said...

Sherry ~
As you know, it is a difficult disease for us to understand - and many friends don't get it, or family members. So I just try to be honest and share what I am feeling at that time. Now, my meds are Orencia and Plaquenil...and finally are helping a little. So glad you are able to work, my friend. You give hope to others and myself!
Keep in touch! ~ alicia