02 March 2011

~When Our Bodies Fail Us~

                                                                 ~Just a little foreword~

I wrote this after an email was sent to me by a Lurker, named Pamela.
Instead of just answering her, I thought maybe it be best to just do a post.

              
~Fibromyalgia~My Dog Days
This was written before my diagnoses of Lupus in spring 2012
                                                                                      



By Mayo Clinic
Fibromyalgia is a chronic illness characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues, nausea, etc.  Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection. In other cases, symptoms gradually accumulate over time with no single triggering event.



All of those icky symptoms.
That is me.
All of the time.
When I go into a Flare~
all of those symptoms are exaggerated in my body
beyond belief.
I rarely write in-depth about having
Fibromyalgia because no one wants to hear someone
complain about their aches and pains.
When I feel this bad, I just get sick of myself.
So who would want to read about what it is like to deal with this?
Probably not most of you.

Most of us blog about the happy in our lives.
The day to day, mundane things that make our 
lives 'go round.
The weather, children, family, our pets,
what color to paint the dining room, our big
thrill-of-a-find at the thrift store....
But, if we are being honest, those mundane,
day~to~day
things should also include
each of our different realities.

What is it about our
Bodies failing us that always seems to take us by surprise?
Things break down all the time.
Our washer went kaput last Fall.
It was time. It was old.
   A few years ago, the alternator in my vehicle went out.
What?
The car was not even two years old.
As J told me, it happens.
It was just time for that part to be replaced.
But, when our bodies fail us, we seem so damn surprised.

In all truthfulness, none of us mind reading a post where the
blog host types out a
"My New Car is in the Shop" post.
But, how many of us really are able to type out a post about
how our body has/is failing us?
Not me.

Yet, after a quick post on Sunday that I was in yet another
terrible, retched Flare~
so many of you left kind notes for me.
And my regular Lurkers emailed me.
In all there were 31 comments and emails wishing me well.
I thank you for that.

But, one Lurker, named Pamela, asked me if I would write
more about what it is like to have Fibromyalgia.
Her cousin was diagnosed one year ago.
She has been virtually bed-ridden for the last 8 months.
{Which, of course, my family knows is my biggest fear.}
Pamela is trying to enlighten her family on her cousin's condition.

So for Pamela,  and anyone else who is interested in
understanding more about Fibro,
this is why I chose to write today.

I used to belong to a forum that is a support group
for persons with chronic illness.
I eventually stopped participating there.
I was so very worn out reading posts where each contributor
"just smiles through the pain"
My pain and all the symptoms~
well, they don't even know the word smile.
Of course, there are persons with very mild symptoms of Fibro.
If my chronic illness would lessen, I do suppose I would smile
on those days when it Flared a bit.
Knowing that was the worse it would be.

But, not my body.
The Flare I am in now is a typical 'bad one' .
Usually lasting a week or ten days, or even a month.
I cannot sleep.
I am utterly exhausted.
But, sleep is something that will not come to me
until the Flare is over.
{Flare with a capitol F is the proper medical term when describing a Fibro flare-up.}
It is as if my body has no understanding on how to sleep.
I do become a walking zombie....

I have great pain in different quads of my body.
My hands hurt.
My fingers hurt.
My feet are the worst.
Because I also have
Rheumatoid arthritis and Mixed Connective Tissue Disease,
I can succumb to tears when trying to walk first thing in the morning.


I suffer terribly from nausea and diarrhea.
Certain smells can force me running to the bathroom.
I bump into things because I have a loss of coordination during a Flare.
Vision problems are a biggie for me.
I also live in a Fibro Fog.
During the most awful days of my Flare,
 watching TV to pass time,
is of no help.
I cannot concentrate enough to follow even the most lame show!
My great love of reading?
Forget it.
Usually I surf the web.
I may visit your blog, but mostly to just look at pics :)

My hearing becomes off kilter.
And often, my skin breaks out.
And two years ago I developed a yellowish
discoloration on my eyelids.
Several spots on each eye.
Why?
My Rheumatologist says they have no idea why this happens
in some FM patients.


Sometimes the weather seems to affect me.
Other times, I can roll into a Flare for no reason I can think of.
And, often, J can spot me going into a Flare before I even have all the symptoms.
Just by the look in my eyes or my face.

But, I am grateful.
When I first went through all the tests my Rheumatologist
ordered he felt we were looking at
Multiple Sclerosis.
I guess there is always worst case scenario.
Funny, the things you become grateful for....

So, yeah.
I have a Chronic Illness.
It is never going away.
It may get worse.
It may not.
And it is now part of who I am.
I do have company.
An estimated 5.8 million Americans have FM.
Surprising, huh?
And very little research money goes into
Fibrmyalgia.
Many do not admit to having FM.
Because people are afraid of being stigmatized with a
chronic illness called Fibromyalgia, that many believe is just
an excuse for being lazy.
That was the thinking into the early 1980's.


On New Year's Day 1993, fibromyalgia was officially declared a chronic illness by the World Health Organization (WHO) in the Copenhagen Declaration. It was declared the most common cause of widespread chronic muscle pain. As a new entry in the ICD code (International Statistical Classification of Diseases and Related Health Problems) it became an official diagnosis.


[Today, thousands of medical articles later, fibromyalgia is universally recognized as a distinct illness. Sadly, there remain a few doctors who still try to tell patients it is simply a catchall name for a collection of symptoms shared by a group of neurotic women, but luckily they are increasingly rare. Despite so many articles and so much speculation, much of fibromyalgia remains poorly understood. It is a complex and chronic disease that causes widespread pain and profound fatigue - accompanied by a range of symptoms that make simple, everyday tasks daunting, difficult, and sometimes even impossible.]
By R. Paul St. Amand, M.D., Claudia Craig Marek, M.A.



Of course, Eli Lilly Pharmaceutical company which markets
Cymbalta (and is one of many meds I take)
does a wonderful commercial
 in black and white, showing a woman
in pain.
Then she takes Cymbalta.
The commercial becomes vivid in color.
And the woman is biking through Italy.
Happy, carefree.
Cured?
Too many friends or relatives of FM patients
buy into ads like this.
Take this pill!
Why are you not better?

Whatever.

I hope for you, Pamela, that I have been able to explain
how FM affects my life.
I am sure I have left out a host of other things I should have included.
One being that a high number of FM sufferers are
Gulf War Vets.
This is a study I am very interested in and have been researching for some time.

And I do hope for my friends that so faithfully visit with me here,
are able to understand why I jumped up on my soapbox today.

My life will continue to be a round of good days, bad days,
and really, really bad days.
Without Faith in God, those really bad days
wouldn't even be possible to get through.....
It felt good to write everything down.


xo,
  misha





































27 comments:

Jeanette said...

I'm so sorry that you are in a flare. My sister in law suffered from chronic fatigue and fibromyalgia. When I was in college I did a term paper on it for my chronic disease class. All I can say is I hope your flares are mild, short and infrequent. Hopefully someday they will find a cure.

texwisgirl said...

I know those drug commercials are irritating, saturating, everywhere, and miracle-touting. But I DO have to credit them for educating the general public about Fibromyalgia. Before these commercials began airing, I had never heard of the disease. Because of these commercials, I know how difficult it must be to live with - incomprehensibly so.

Thank you for putting a personal and relatible experience on this disease for your readers. And I only hope this flare is shorter than you anticipate. :)

Laura said...

Misha,
Thank you for sharing. It does feel better to "get it all out there" sometimes. People need to understand...
You will be in my thoughts and prayers.
Hugs,
Laura

Maura @ Lilac Lane Cottage said...

Dear Misha,
THANK YOU for being so honest and open about your life with Fibromyalgia. I knew a bit about it but you have really opened my eyes to what it's like to live with this chronic disease on a daily basis and when you have a bad flare-up. I think I have bad days sometimes as I get older I have aches and pains but those are NOTHING compared to what you have described here. You are such a wonderful inspiration to each and every one of us. We all miss you and hope that this flare up will soon be gone and that you'll be out enjoying life on your beautiful farm and giving the horses lots of love soon. Thinking of you.
Maura X :)

Donna said...

Misha,
I have friends with fibromyalgia and I feel like I have the same symtoms sometimes.
God Bless You and thanks for sharing with us.
Hope you feel better.
Hugs,
Donna

Vintage Barn 27 said...

Hi Misha,
Your post had me captivated as I read through what you go through with flare ups. I never understood in an in depth insight on what the fibromyalgia disease does to someone. My heart and soul feel for you. Hopefully there is a cure or at least a medication to keep it in check before long. I pray that your flare ups lesson and to not have harsh ones. Take care Misha. Thank you for the post today.

Karen said...

Misha, I missed your last post - I sure hope you're beginning to feel the fog lift. I think FM is misunderstood so often, even by physicians sometimes.

I'm sure your post has helped tremendously to those who are suffering with this disease. Knowing you aren't alone helps too... by sharing your story you are doing a big service to others -
Thinking of you -

Deb said...

I'm glad you are starting to feel a little better. Blogs are great therapy. You just go ahead and write it all down anytime you feel like it. It doesn't have to be all sunshine and butterflies for us to listen.

Rural Revival said...

You have every right to get up on that soapbox and tell the whole world about what you're going through. You have, no doubt, enlightened many people today with this post. A post, which I might add, will be here for eternity on the internet as people search for information about FM. Just think about how important that will be for someone else someday. I'm proud of you!

And I wish with all my heart I could take it all away for you. I meant it...I'll be better when you are.

Lylas ~ always

Andrea

Lucy (aka rharper) said...

I truly wish there was something I could do to help you. I'm sad.

Golden To Silver Val said...

Thank you for this post. I have long suspected that I have this disease but have never been able to get my doctor to confirm it. Its horrible not knowing for sure, although he did check me for MS and I did not have that. I have a lot of the symptoms but not all of them. I did take Cymbalta for a while but it was expensive and I didn't feel it really helped me that much. I'm so sad that someone as young as you is going through this. I'm praying that someday a medicine or cure can be found. In the meantime, may God continue to watch over you, Misha, and relieve your pain and hopefully the flare ups will be fewer and fewer as time goes on. Big hugs.

Jeni said...

Thank you for your honesty Misha. I hope your days get better with spring coming!

Country Dreaming said...

Dear gal---
Her's hoping your "Flare" will subside soon. It's not any fun being in sooo much pain.
I wish all the best for you and hope for better days coming.

Melinda

Growing Up A Country Girl said...

Thank you for sharing in this post Misha - I know how difficult it is to write about the unpleasant things in our daily life - and you are correct we bloggers try to write about happy day to day living. Your post was very informative - I really had no idea that flareups involve so many things. I went thru testing for RA during a time when I struggled with pain - I have somewhat of an idea but then again I really have no idea what you and others go thru... we can all pray for some progress in this area.... I hope your days begin to brighten up --

Vickie said...

Misha, I only stop by sometimes, but am so sorry to hear about your problems with Fibro. A dear friend of mine has it and I watch her deal with it, change her diet, change meds, everything I'm sure you. She still has it of course, and it hurts me to see her deal with it. Somedays she's strong and some days she is weak and can hardly get through the day.

I'm sending up prayers and to you well wishes that your flares will somehow become lessened and more infrequent. I'm glad you shared this with us - perhaps we'll be more sympathetic to those around us who are affected by this disease. It's not whining - it's being real and sharing a part of your life that might help someone else. Thank you.

Julie Harward said...

Hi sweetie...I just got back from a few days away and I am not really commenting to anyone tonight, except you. I am so sorry that you have this...I have seen those commercials and thought about you. I wish there was something I could do to help. I just send all my love and gentle hugs...God bless you...I will pray for you. :D

ain't for city gals said...

Misha, I am so glad you wrote this post...I wanted to ask you to write about it but thought maybe you didn't want to. I have a pain tolerance level of 0 so I just don't know what I would do if I had the pain you have. The commercials irritate me...they minimize the disease touting if you take their pill it will all go away....and happy ever after. I don't think that is the way it is...

Phyllis said...

Hi Misha,

I'm one of your semi-regular visitors and always enjoy the stories and pictures of Annie and your other animals.

I'm sorry you're having a Flare and sorry you have to deal with this disease. Your post was very informative and will help others realize that FM isn't just a woman's excuse for being lazy - that's nuts.

I know most of us bloggers who visit usually post about the happy parts of our lives, and that's a good thing. I've gotten so much inspiration from so many other bloggers. However, I think this is a wonderful opportunity to also share information on important issues. And who better to share information than the people who are living it - whether it's a disease or an environmental issue.

If we don't want to read about a particular subject, we can just hop to another blog.

So thanks for this post. I sure hope you feel better soon, and I sure hope your FM doesn't get even worse in the future.

No wonder your love of and gratitude for your animals and home shines through your blog!

Take care,
Phyllis

The White Farmhouse said...

Once again your strength and grace amaze me. I know it took alot for you to write this post. You are right, most people don't like to hear about the nitty gritty of daily life. It's hard to admit that your body is failing. Most think it is a sign of age, but often not so. I am sorry that someone as wonderful, warm and loving as you does have to suffer with this. You are an inspiration though. I do so hope that you are feeling well real soon. Much love and hugs to you!

Donna said...

First of all, {{{{{{HUGS}}}}}}. I am so sorry that you have to go through the pain and discomfort of this ailment. I agree with you on the frustration we experience when our bodies fail us!

Thoughts on Life and Millinery. said...

I was so touched to think that you are able to look at blog pictures when things are at the worst.

Amy said...

Hello dear Misha,
Thank you so much for your warm words on my blog tonight, especially enlight of what you are going through! I have to admit, I didn't know anything about this illness and very honestly didn't read about it here on your blog. I guess I saw it, but I just would pop in, read your posts and comment then go again..
I think your blog should be for sharing whatever you want, good or bad..those who choose to read and comment or just lurk- it's their choice. I don't believe anyone has a perfect life, but we each have the life given to us and sometimes we share similar things in these lives with other people without even knowing it. By sharing your story you may have touched or inspired or helped people in the same situation as you without even knowing it. The big guy up there works in mysterious ways and often through each of us in order to reach all the millions of people in the world. You should never think your story doesn't matter or shouldn't be heard...there is someone out there who needs to hear it...who wants to hear it! I'm sure your beloved J and your wonderful loveable pets are a comfort to you in these difficult times. I can't say I understand what you are going through but I sympathize with you more then I can write. Stay strong my friend, this moment will pass and before you know it a new and better day will come. You're in my thoughts for a speedy recovery.
And I'm awaiting your bag any day now, I'm hoping with all my heart it will look good enough that I'll want to send it!! Keep your fingers crossed!! I've also ordered some other prints of some of my photos- the ones I made into art...so I'm anxious to see how those turn out. I'm not sure they will be as great as I hoped, but we'll see!
Sarah works for the international clothing store, Lindex. You might find something about it online. If not I'll try and find some info and perhaps blog about it sometime. She just started so I can't disturb her by going in and taking photos while she is at work, she'd die of embarrassment!! hahaha!!
Ok my friend, it's late...we'll talk again soon- a big warm hug from me in Norway :-)

Amy said...

Hey Misha, just wanted to drop you a note and say first, I hope you're doing better today then last time I was by and to tell you that today I sent out your package!!! :-))) I'm so excited! It's nothing much really but just happy to send you something, I always love getting things in the mail- rarely happens but I know how fun it is and so it was fun to send it to you- hope you'll enjoy it!

Have a wonderful Monday my friend- big warm hugs from Norway :-)

Thistle Cove Farm said...

Oh Misha, how I wish I could be there to help you. I'd probably not be of much help really, but I can make tea and bake shortbread and take the dogs for a walk and keep things quiet for you.
I have other friends with Fibro and I hate it for y'all. It's such a nasty illness and so many have no idea how nasty it can be. As for those stupid drug commercials and stupid people...your pain is your pain and is not lessoned because someone else doesn't understand. You can only do the best you can do and, sometimes, that's just suffer through it and come out on the other side. Please don't worry about, nor waste energy, on thick people; they are not worth, nor deserving of, your energy.
Bless you for the courage it took to write this post; it helped you and it will help others.
Tucking you into prayer...Sandra

Bluebird49 said...

Hi Misha--Not sure how I got here--I'm having a flare right now, too, and it's my neck and my feet that are the worse, too. And--well, all over. I'm 61, and I've had this for about 18 years, that we know of--it could be longer. Not sure what brought it on--but it's really not fun at all, is it? I know about the ads, and I've tried everything, but nothing seems to work. I FEEEL lazy, and nothing gets done around here--and thank God my husband understands--and I thank God He's there for me. I don't know how people without a belief in God actually get through anything. Best wishes--hope today is not so bad. It seems to me when the barometer changes, this gets worse, and tonight, it's pretty bad. DO you notice things like weather changes, too??

as always starzie said...

Dear Misha,
First of all I want to let you know how much I enjoy your wonderful blog site! I have learned so much about horses and I love them even more than I did before reading your blog. I also love all of your other furry friends! How wonderful for you to have them in your life with their unconditional love!
Second of all, I truly can identify with how challenging your life has been living with chronic disease. I have been dealing with RA for thirty years. I have gone thru two total hip replacements, two total knee replacements, hand surgery and foot surgery. Just recently I had a revision surgery on my right hip. Thru it all I have lived a fairly normal life. I have three children and three grandchildren with one on the way! They are the love of my life and keep me going. Although, this past surgery has been beyound challenging! I think the message I wanted to relay to you is it is my belief that you will not find any cures or many answers to your diseases with main stream medicine. It's because they will always treat the symptoms and never get to the root cause of a disease. Most often the medications given to treat illness will just in the long run make a person sicker! I have always felt treating disease naturally is the way to go. You must do your homework and research what natural holistic approaches might work for you. I feel our body has been equipped with the ability to heal itself. So I search and search with the faith I will find a natural root to go! There is a very interesting show "Know The Cause" with the host Doug Kaufman. He has written many books and believes there is a fungal connection to many diseases. I really think he is on to something. You can look his show up and find his web site on line. I don't fault anyone for going with main stream medicine. Everyone should follow their heart. I just don't have very much faith with it. It is my opinion the pharmaceutical industry does not have any interest in curing people. There is too much money to be made treating them! I hope I have not offended you. I just felt compelled to write to you because of everything I have been thru and learned (mostly the hard way) these thirty years I have dealt with RA.
Take care. And I pray you find your way to better health. Don't ever listen to a doctor when they say your condition has no cure! I don't believe that!

Hugs from,

Darlene
My email starzie98@aol.com

Lynne said...

Misha,
It has been a few days since I have heard from you so I felt you might be deeper within a Flare. Each day I looked for you and instead of looking and hoping to receive, YOU, I thought I would read more about Fibro on your site. Thus, I found this post.

I needed to read it, hear it, try to feel and imagine what you go through. I can't possibly get inside and know what it is like. BUT, your words have been the best visual for me of what you go through and I needed to read it, try to feel IT and bring it into my being.

Strange how I, and I imagine most of us want to FIX when we sense someone's brokeness, sadness, despair. And the helplessness that comes over us when we realize we can't fix it.

One thing I received from your writing is a much deeper glimpse into what I thought I knew something about but I simply did not know.

Someone once told me, ". . . . it is important to tell others our stories . . ."

Your telling us, teaches.
Your vulnerability paints us wise truth of your essence.

Fibro isn't fair, you are such a beautiful soul . . .
Yet, even with "not fair," and in the midst of it all . . . you give.

I care . . . and "I will be with you always . . ."
love
lynne
on