19 September 2011

~On Being Real and Saying Goodbye~

Canvas painting and original font by Sara Frankl

I am constantly making excuses for this chronic illness of mine.
I bail it out at the drop of a hat.
it's the weather
it's the cold
it's the heat
i did too much
i let myself get stressed out
i slept too long
i cannot sleep
i didn't do enough
i stood too long
i sat too long
i walked too far
ad nauseum

But the simple truth is my body has been in a Flare
for months now.
Probably 6 months.
It is just that some days are better than others.
While two days ago found me hopeful,
yesterday found me working the first two hours
of my day, trying to get out of bed.
Today it only took an hour.
Progress, people!

I have this intense
fire-breathing dragon
who likes to settle in-between all my joints.
Each time I move~
he breathes fire.
In my shoulders, my elbows, my wrists, my fingers,
my hips, my knees, my ankles, my feet, my toes.
And it hurts a lot more than the word, ouch.

This silly dragon does not like to sleep either.
He enjoys partying the night away in my
brain, keeping me wide awake.
And with days on end of no sleep,
he just keeps adding fuel to the fire.
I have stomach issues that lead me to being
an A#1 Popsicle eater! 
The smell and the very thought of food
just does me in at times.

Because I have lost so much of the tissue
that buffers my bones,
bumping into something, 
that most people would declare a 
*yowza, that smarts!"
'causes me to melt into a heap of tears,
with unrelenting pain.

Canvas and original font by Sara Frankl

I met with my doc two days ago
to discuss new options.
Only, there really are not any.
I am now taking the highest levels of all of my 
On my really, really, really bad days
I cannot imagine what it would be like 
to not be on these medications!

What I can hope for now is to
go into remission.
A remission that will give me a reprieve of sorts.
So that my good days will out-number
my dragon days.
I know that I have discussed all this here before.
So I hope no one is rolling their eyes and thinking...
"enough complaining!"

I guess I just want my friends to understand.
I don't ever want to mislead anyone into thinking
I just have a few bad days and I then 
I totally return to a state of normal.
If there is ever anyone out there searching for 
a friend in this chronic illness world...
well, I want them to know they are not alone.
Someone understands.
Me. I do.

I want this place, my little corner, in Blog-land,
to be a place where I can be honest about how I feel.
But I didn't always think this way...
In the past while on my ventures of blog reading,
I would find someone saying,
"I don't want hear about other's
aches and pains"
"I just want to read happy blogs"

So for a very long time,
I was so very careful about not being
fully intentional about all of me.
But, real life just is not like that.
Is it!

A friend I met a few years ago through blogging
suffers from an enormous and insane 
amount of health issues.

When I first found her blog,
I was thrilled to read her honest account of living
with chronic illness.
I emailed her.
She emailed back!
And through our little 
notes to one another, and reading her daily posts
I learned something.

Sara two weeks ago with a visitor!

She was educating people about chronic illness.
Teaching others about her disease.
And everything that comes with it....
She was being honest.
She was being real.
And in a little note she sent me I realized
I was not being honest or real
to my readers. 
And that having 
a platform to use, in any way for good,
to educate others about something they may 
not be familiar with was a blessing.
And so, holding her virtual hand, I took that leap of Faith.

Finding Joy! Just a few weeks ago...

Some of you may know Sara Frankl,
If you don't, then you are missing out :)
She is real in everything she writes.
I adore Sara :)
Some 14 years ago, Sara was diagnosed
with a chronic illness.
Over time, other little 
*chronics* {as i like to call my add-ons!}
crept into her life.
And eventually Sara became totally home-bound.
Unable to leave for anything.
Even the funeral for her beloved father last year.
{She was able to watch via Skype. How awesome is technology}
Her groceries are dropped off by a friend each week.
Her medications are delivered.
Every other week a friend comes to clean her condo.
Sara and her adorable pup, Riley, spend their days together.
Wrapped in love.
From her family.
And her friends who have become family.
Sara's love for all things spiritual have continued to guide her. 
And me...
Sara with Riley on one of her last ventures outside.

The tagline for Sara's blog reads, 
*I am just a girl who used to write to make a living.
Now I write to make a life.
Extremely blessed, well-loved and Choosing Joy
while learning that home bound doesn't
limit your life, just your location.*

~ Choosing Joy ~
is the name of Sara'a blog.
How appropriate is that!

Sara's pup, Riley!

A few weeks ago, 
Sara wrote that she was taking a blog break.
Her health was such that even trying to keep up
with blogging was impossible.
She needed to concentrate on figuring out
plethora of new symptoms. 

A very loved little pup!

She needed to remain still and quiet.
A good friend has been updating her blog.

This past Wednesday morning as I lay propped
 in bed with my laptop,
I saw that Sara's blog had been updated.
But, the update took my breath away.
Her physicians had been very honest with her.

Through burning tears I read that 
Hospice was now assisting Sara.

Her family was gathered around her.
 Sweet pup, Riley, at her side.

Sara has a Faith that has never wavered.
Weaving that Faith with words of Joy 
in everything she writes about her life.

Whether or not you are a spiritual person,
doesn't matter when reading her prose of daily life.
Sara is funny, warm, honest, and 
And real is what she asked to be conveyed
when her friend wrote this week about 
Sara knowing her time to leave this earth is coming.
Her body is shutting down.
On Thursday, her Priest gave her Last Rites. 

Thousands of uplifting messages have been 
left on her blog.
Her Facebook page is continual ticker tape,
constantly being updated with 
messages of love for Sara.
As her family surrounds her, they are continually
reading to her these words of Love.
If ever technology was used for good, this is it.

Two weeks ago, Sara was able to Skype with friends!

And so we wait.
To know that Sara has moved on to a place
where she is no longer confined to a body
that betrayed her.

My message to Sara yesterday was to let her know
that I will continue to be real.
To tell my story, 
however small and insignificant it may be
in this huge world.
And I will always remember the words in that
little note of big love she sent to me.

"....and always stay true to telling your story.
You never know whose path might cross yours,
on a day when they need  to know they are 
not alone. And always Choose Joy!"

I will, Sara.
I promise.
And thank you for being my friend....


{if you normally just lurk, would you mind leaving a comment today? I would really appreciate it :)}

I cannot express how much comfort and joy 
Sara and her family are receiving from all the messages being sent
from friends and strangers! 
Please visit Sara's place and leave a message for
her and her beautiful family.
They all need our love and support.
Choose Joy!

You may also visit her Facebook page.
Sara on Facebook 
Thousands of beautiful entries have flooded her page
in the last few days.
I am sure you can imagine just how
much this means to her family.

And keep sweet pup, Riley in your thoughts.
He and Sara have traveled a long road together.
He is going to miss her so very much.....

“I have fought the good fight, I have run the good race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day–and not only to me, but also to all who have longed for his appearing. ”
–2 Timothy 4:7-8

*Group Skype pics and Sara pics
courtesy of The Mom Creative.com
*Riley pics courtesy of Sara Frankl
*Canvas prints all courtesy of Sara Frankl

Celebrating Sara! Read more about how Sara has touched lives around blog-land. My post is #104! Gracious me, she is Loved...


Snappy Di said...

Oh YES! we all need to choose joy on a daily basis.

I'm so sorry to hear of Sara. It's wonderful though to know that she has had such great support through her pain.

I support you too! I truly thought you just had flare ups, but now to hear that you fight this pain all of the time just breaks my heart, Misha. I know that you too choose joy on a daily basis... I can hear it in the words you type. Be strong.


Growing Up A Country Girl said...

Very nice and heartfelt post Misha - I am sending prayers to Sara and her family... I also send prayers to you and all families who suffer from chronic pain - it is a humbling reminder to others that we all have our own pain to bear and that we shouldn't judge. Stay strong and please keep on writing.....

Lori said...

Very well written Misha! I have a friend who has fibro and know from her it's a daily battle but until I got to know her had no idea. The more you tell the better educated everyone will be on your illness.

So sorry for your friend Sara. It sounds like she knows her Savior and will be moving on to a better place with no more pain and no more tears. Thanks for sharing.

kfsullivan said...

Thanks for this. I have so enjoyed meeting friends of Sara this week.


TexWisGirl said...

oh mish. what a touching and truthful post. i went to sara's place and posted a little note. thank you for sharing her with us. and for sharing you with us.

Deb said...

This is a very lovely post about your friend. She sounds like a very special person and I'm glad she showed you how to "keep it real".

I truly hope that you go into remission but until that happens keep choosing joy!

Lynne said...

Beautiful words about dear Sara.

And words of truth and honesty about yourself.
I hear the joy in you in the midst of what you go through in your bits of zest that come through in your words.

I can't imagine what your days and nights must be like.
I CARE though and wish it wasn't this way for you.

I am praying for remission.

~Kim at Golden Pines~ said...

Hello Misha! I so admire you for finding joy and strength and beauty in each day! I also admire you for 'keeping it real' on your blog. Someone told me today that they don't like to visit my blog because I have lost so many dogs...For me, that's life, and that's what I write about, and you write about truth and life as well.

But I am so sorry about your friend Sara and will drop by and leave a note for her...But the two of you found strength in one another, and I know she'll still be there for you, sending that same strength and courage from the other side, and we're here for you on from THIS side!!

Cindy said...

Wow...this post touched me so deeply, it's difficult to put my feelings into words. All I can do is say "thank you" for being "real" and please know that I'm saying a prayer for you and your friend, Sara. This came to me at a time when I really needed to hear it. I'm off to look at Sara's blog now. Bless You! Hugs!!! Cindy

Country Dreaming said...

I have always loved your blog and I think that you know that. From the very first time I landed here I have been hooked.
I am so sorry that you are having such a tough time right now. My biggest wish for you is relief!
I am also so sorry to hear about your friend.
Prayers and blessings for Sara and her family.
Prayers and blessings for you,my friend!!!

Love you!!!


Joyce Ann said...

Oh, my blog friend, life is so hard some times isn't it. I think we are in the same place right now friend. The mental pain mixed with the physical pain is almost more than I can bare. I will follow your lead and try to think on the good, the good of my dear friend and yours and the good of days when it doesn't hurt quite so much. Your are in my thoughts.

Sparkless said...

I love to read real blogs about what people are actually going through good or bad. So keep being true and thank you for telling us about Sara. Her story brought a tear to my eye.

Maura @ Lilac Lane Cottage said...

Misha thank you for having the courage to open up about your illness and for helping us to understand how it affects you on a daily basis. I had no idea that it took this much toll on a person. I'm sure your posts help many who are suffering to realize that they are not alone.

I had never heard of Sara before this post...thank you for sharing her story with us. My heart goes out to Sara and her family. She will certainly live on in all who have gotten to know and love her.

I think of you often and wonder how you're doing and hope that you are having a good day. Misha I hope this week is a better one for you.

Maura X

Donna said...

Sara was such and inspiration and I can sure see that she touched your heart! God bless her and may her family find peace and comfort in how well she lived her life.

I know how aggravating it is to have your body betray you. I don't have your condition, but I have physical ailments that constantly nag me. Sometimes you have to dig a bit deeper for the joys in life, but they are there. You have many blessings. And I will be praying that this monumental flare will give you some peace and leave you along. {{{{hugs}}}}

ain't for city gals said...

Misha, I have no words...sometimes life just comes crashing down on us. I hope you continue blogging about your fibro...I have learned so much from reading here.

Rural Revival said...

I never, ever think of it as complaining dear friend, but something far more precious....perspective. Sometimes it's subtle and sometimes it smacks us in the forehead and says 'duh!' but the busier life gets the more of it we need. And I am thankful for your good and kind heart every day and for Sara's as well. You make the world a better place.

(and I really, really do.)

Jeanette said...

Beautiful post, Misha! I am so sorry for what you have to endure, but you inspire me with your faith and graciousness. I am sorry for your friend, too. I'll go visit her page and keep her in my thoughts (and you, of course)!

Elle Bee said...

Misha, I'm so glad you are honest on your blog. I will never think you are complaining. I just want to know YOU! Thank you for sharing about what you endure every day and for telling us about Sara. My heart just breaks.

Donna said...

I love that you share how real life is through your blog. I never feel as if you are complaining ... it's just facts. I have always shared how I feel on my blog. I hope remission finds you soon!
I am so glad you shared Sara with us! Bless her and her family. I am going to visit her blog now.
Take care of yourself!

Joycee said...

Some people say BlogLand is where we pretend to have perfect lives, I don't see it that way at all. It's hard to explain how we can open our lives and share our trials with perfect strangers who become real friends. In these days and times, it's a mystery that anything like this can occur. I say it's Divine Intervention. I hope you can find a therapy that will work for you and give you some comfort. We are here Misha, listening and sending up whispered prayers for you!

Kelly said...

I'm so sorry to hear about your loss! I know you must miss Sara very much! Those of us who have chronic illness know how what a struggle it is to get through each day. Thanks for being honest Misha! I read your blog and can sympathize with what you go through since I struggle with some of the same things! I will try to email you later today. sheep12315@gmail.com

Angella Lister said...

Dear Misha, this breaks my heart, but thank you, thank you for sharing Sara's journey, and your own. She has been a beacon to you, as you are to others. Bless you, and love. Angella

Campbell Kids said...

Dear Misha...

I'm so sorry to read about your loss and the pain of the journey right now. I can truthfully say - I understand. I was diagnosed probably 15 years ago with severe fibromyalgia. Some days are almost diamonds - many days are definitely plain old stone. I don't have time right now to read back and see what meds you're taking. No doubt, I've had them as well. I am currently on the new fibro drug SAVELLA and it seems to be helping some. Everything is in increments, isn't it?

I'll be praying for you and for Sara's family...



Vickie said...

Misha, very sweet and honest post you have today. Thank you for sharing your heart and Sara's story. Live Joy every day - I am convicted that I don't do that every day. I will think about Sara and you, too, and remember the joy that Sara spread. I pray for you Misha - that you will have a remission and have some relief from your pain. Thank you again...

Karen said...

The reason I am drawn to your blog is because you keep it real, Misha. We all struggle, although some of us don't choose to put the struggle on our blog pages. The friendships that form in blogland are generally among those who are keeping it real, letting it out, sharing. We all suffer to varying degrees and for different reasons, and we bond over the thing we have in common - the struggle to live a good life, despite obstacles.

I live with chronic pain too due to arthritis, and hearing loss as well, and as you know, choosing JOY isn't always easy... but we all help each other, don't we. :-)

So sorry to hear of your friend Sara's struggle and her passing. What a genuine legacy she is leaving behind....

Thistle Cove Farm said...

Misha, what a wonderful tribute to Sara and I always want to read what you write. Life is real and messy; it's not always real and pretty. Choose joy anyway; generally I do... choose joy.
Praying you'll feel better soon!

Karen said...

Misha I am so sorry for your pain, and I could never deny you expressing the truth of your every day existence. I used to be a massage therapist and had a special client with fibro. I treated her body like it was made of eggshells, b/c she just hurt all over. She said the massages helped her and kept coming back, but honestly, I think she just wanted caring and compassion, more than anything. She always got both from me, and so will you, my dear. I just did a piece of artwork for the Susan G. Komen foundation that will be auctioned off, along with others. In it you were supposed to depict strength, hope, faith, etc. I decided to do JOY because that is where my strength comes from. It said "A merry heart does good, like a medicine". And I really believe that. You always manage to stay positive, even though your body is on fire. You are an inspiration whether you know it or not! I am sorry to hear about your friend and will go leave her a message as well. She sounds glorious, an earth angel...I know you will miss her when she is gone. I think she may be passing the baton on to you, dear Misha:)


AutumnSkyRanch said...

Misha, I am a lurker:-) I am also Di's sister so I read many blogs through hers. I don't have my own blog because I cannot imagine putting my life out there in such a public way. You are a strong person, in spite of your pain, and I think you are just lovely. Remember in Bridget Jones when Mark Darcy said, "I like you, just as you are." I love that line. I can tell your blogger friends feel that way about you. Sending you a big hug from California.

Gail said...

What a beautiful post. Being real is good.

Lady Courtney said...

Be real, we are here to support "you"! Praying for you! Donna :)

Melina said...

Hi Misha, this is Melina from The Wilder Coast. You and Sara are in my thoughts. I suffer from chronic migraines, and although NOWHERE near what you experience, I can understand the list of excuses....everything is a migraine trigger...

I wish you love.


pilgrimscottage said...

A very touching post. It's very sad, though to hear of Sara's death. What a difficult time it is for her family and her little dog. I wish for you, Misha, that you could be well. I also have a chronic illness but, am able to control it with diet. I do get days, though. I hope for more days of feeling well for you.

Angella Lister said...

Misha, thank you for bringing Sara into my life. She teaches us how to live. xo

Old Centennial Farmhouse said...

THANK YOU for introducing us to Sara...I'm sorry I didn't know of her sooner, and your writing of her is just beautiful. Thanks for being YOU, Misha!

Oz Girl said...

Your posts are always so wonderfully heartfelt Misha, this one even more so. The realities of life affect us all, some more than others. I'm so sorry that Sara's chronic illnesses have taken a turn for the worse (my eyes teared up when I read that part in your post) ~ I will visit your post on Blogher and Sara's FB page also.

Many *hugs* to you for dealing with what you deal with every day yourself. I'm glad that you choose to share with others and I agree that sharing is helping others to cope with their issues too.

Keep marching forward as courageously as you have - I'm sure you continue to inspire others to keep on keepin' on Misha!!!!

Carolyne said...

A-men and A-men! What beautiful words about a very special person.
The difficulties I face each day with ailing parents brings the words of this post even closer to home for me. Thank you so much for giving Sara's life more emphasis to encourage all of us.

Flat Creek Farm said...

What a touching post indeed.. tears of sadness, but yet joy. It's funny how two words, and a real story can change one's day.. week.. month.. life. Thanks Misha for always keeping it real, and sharing. Hugs, Tammy

Ann On and On... said...

I always go back to the Velveteen Rabbit and the story of being real. You're a beautiful, real person.... what an amazing post!