FMS Awareness Camapign

Fibromyalgia doesn't just cripple the sufferers it tackles and attempts to take out the family and friends as well. This year I'm going to try and help to educate my community and the world. My hope is to educate, inspire and give FMS sufferers a way to cope. I have been suffering from FMS for just over 4 years. Educating my family and friends has been hard and exasperating @ times. People don't always understand my pain because they can't see it. My hope is to create awareness so the world will see, our pain may be invisible but it is NOT non-existent.

May 12 is Fibromyalgia Awareness Day my goal is to educate @ least 100 people and 2 organizations about the effects of FMS on the sufferers, friend and families. Join me and help make us VISIBLE.

Fibromyalgia Awareness Day Homepage

http://www.fmaware.org/site/News2?page=NewsArticle&id=8185

Amercian Chronic Pain Association

http://www.theacpa.org/

Arthritis Foundation

http://www.arthritis.org/index.php

Fibro 360

http://www.fibro360.com/

Fibrohugs

http://fibrohugs.org/

Fibromyalgia Network

http://fmnetnews.com/

The American Fibromyalgia Syndrome Association , Inc.

http://www.afsafund.org/

The Fibromite

http://www.thefibromite.com/

Patients Like Me- Fibromyalgia Community

http://www.patientslikeme.com/fibromyalgia/community

My Fibrosite

http://www.myfibrosite.com/

Some things you should know

I have been remiss in stating that I have been keeping a written journal with my thoughts and feelings.  It is dated and when my hand recovers from the surgery I will be under going tomorrow I will finally be able to upload them to the computer. 

I'm sure many of you have probably been wondering why this has stayed empty and I have been filling it.  It's just that I don't own a laptop and my office is in the garage.  With my Fibro and recently the injury to my hand I have found it easier to write down my thoughts.  My intention is to eventually post them and I will date them accordingly, no worries.

As for the upcoming surgery hmmm.  I am not really worried about the surgery but after the surgery has me a little concerned.  Fibromites just do not handle pain well.   Our pain receptors are totally jacked up and well I guess will we just have to see. 

Updates

long time everyone, lol just wanted to let everyone know that I've been keeping a old style journal. with my hand injury it's been hard to update the puter. my surgery is scheduled for the 18th and will allow me to at least get back to my puter fun and my crafts. see ya on the other side of my surgery.

Milestones

I hit a milestone this week. And while I probably should be sleeping and my body is definitely exhausted, I need to document this.

I cooked 3 out of 5 days this week! That is the most I have cooked since I became sick. Well okay maybe I have cooked that many times in a week but NIT in a really long time. Also it is important that I point out that it was three days in a row! Real meals too, not quickie foods. I made Pad Thai, then tacos, then chicken and rice. I made foods that required preparation, cooking time and well it was a lot for me.

However I find I do have to stop writing because my injured finger has been extremely painful over the last couple of days. Which I'm sure was further aggravated by the cooking and pushed over the edge by my masseuse, when he tried to "release" it today.

Not only did it not work but it was still extremely painful. The rest of my body however feels tons better. My new masseuse really is fantastic, my index finger I feel just may be a temporary lost cause.

I know it may seem silly to some to journal about being able to make dinner. however for me that's like saying a ran a marathon or performed a successful surgery for the first time. It is truly noteworthy.

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Lost between many pages

Sometimes I wonder if I read too much. As if there was a curse of written words embedded in my skin. But it's more than that...

They call to me books, they whisper their secrets when I enter a library or bookstore. Their whispers are coarse like the roughness of their pages. Yet soft and willowy like the words from which they are given life.

From a very young age, I have constantly surrounded myself with books. They have been my friends always. They have never scolded or condemned, boasted or envied. Their blessings have always soothed my wounded soul. I have kept my vigil with them, their steadiness, their truth. Always returning to the pages for rest, peace, and knowledge.

I have those who find it queer that I feast on books the way one might a succulent ham. Yet the flavors they have offered, these books I have tasted have been more life giving, more sustaining than any food I have ever eaten. The greatest book of all the Bible has the tastiest words of all-
" I am the living bread that came down from heaven. If anyone eats of this bread, he will live forever. This bread is my flesh, which I will give for the life of the world." John 6:51
This is true meat, the bread of life totally sustaining.

As a girl I would clasp my books to breast, staring out my bedroom window with dreams alight in my eyes. everything I have ever sown in this world has come from the dreams that I have spun from the imaginations of my favorite authors. Heroines, strong willed female characters, with balls made of brass, making a life vivid with dreams, colors bursting with fantasy.

I gleaned knowledge from the fantasies I read and interwove then with the reality of my life. Believe me that with out the fantastical nature of the things I read, reality would not be a place I would have happily dwell ed. Even then I had to struggle with reality suffusing it with my captured fantasies, so I could survive.

I know my solace in books has often overwhelmed my life. However I stand grateful because at those moments the realities of my life were too unbearable. I stress, how grateful I am to my passion for the written word. It has kept me sane in a too REAL reality.

Now with my life so discombobulated I read to stay my frusterpation at the world. The world has changed and it's surroundings wound me with all of it that I can not change.

So I say let me be obsessed with my fervent need for the weight of paper, bound by words, dressed in imaginative covers. The smell of the old words and new together in the library or bookstore. Let me be intoxicated on the siphoned dreams of a writers genius. I may be constantly drunk but it's on knowledge wrapped in fantastical sanity.

It is a place I most long to be. When the world becomes too much, it is here that I go. A book is joyous to be loved by more than the author. it is loved by the one who is pleasured by it's text. Blessed by it's birth and calmed in it's pages.

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Moments

My mind has recently concluded that I have purged most of my irrational fears concerning the recent events in my psyche. I did have an irrational moment of fear but it was not what one would expect after living through the last 4 years.

My momentary panic was actually in reaction to the thought of losing Torrey. In the past this was a common occurrence. Especially in the early years of our relationship. However after this many years that fear was gradually replaced by others.

even after the revelations of January 6th, I did not fear that. I actually wouldn't have minded if one of the past ex-gf's had come to claim him. It would have been all too fitting.

Now as we begin to re-connect, slowly binding and mending what had become so frayed. I have began to fear to lose what I have regained.

Today I wrongly accused him of contacting his most recent ex. I had found several numbers in our phone bill that had had the same area code and city as her cell. He denied it fervently but considering his recent track record I was loathe to believe him.

Being the just woman that I am, I went over the bill again trying to prove him right and me wrong. It wasn't long before I figured out my error. I had mistakenly taken my new gf's cell for his ex-gf's cell. They are both from Cali. I quickly called Torrey back to apologized. I told him I was wrong and what I had done. It didn't go over very well. He hung up on me.

Now I understand why he was mad, he has been trying very hard to make amends. but does HE understand, I mean really understand why I can't just blindly believe him anymore?

When he finally deaned to call me back, almost an hour later he was very unhappy. He didn't like being accused of something he hadn't done. He said "I've been trying SO hard and that really hurt." I'm sure it did but what about the YEARS of hurt that he has caused me.

It's hard to sympathize with all that hurt still rising to the surface so often. and yet here I am having that moment of fear, fear of losing the man that has caused me so much pain. Them I remember that before the pain there were years of maybe not euphoria but I was content and he was a good husband.

If I am really getting that man back again. If he really is falling back in love with me the way I am with him. Then maybe it's okay to have those moments. Maybe that fear is healthy and will keep me focused on taking care of me from now on. Maybe losing that fear is what helped get me into the mess that we are fighting to get out of now.

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Helpless

Sometimes I feel so helpless, the pain takes over and I am the pain. It defines the moment.

Last night was bad, so very reminiscent of Alaska. I had a night mare of being in the mountains, a cabin. It was so cold, and my muscles began to spasm. The bones began to ache and swell. In the dream I fought for warmth and consciousness.

I awoke feeling Torrey's presence in the house. I took my evening medications and went to the living room to welcome him home from work. I grabbed a couple of Fig Newtons from the cabinet. I always have to get the medicine taste out of my mouth. With the Newtons, I headed back to the bedroom.

Upon returning, I found the sheets and covers on my side of the bed damp with my sweat. Always a BAD sign. I let the bed air out a little longer, retied my hair wrap, placed my eye patch over my eyes and resettled my body for sleep.

I lay there mere moments before I began to feel as if the pain from the dream were real. I thought I was having another nightmare. I was already trying to wake myself before I realized I was awake. Torrey was climbing into bed, I could feel his every movement. I began to panic, the pain was starting to overwhelm me. Shaking I asked T to open my Percocet. I took my dose and a muscle relaxer.

I lay there waiting for the medicine to take effect. The interim was maybe 45 minutes but it felt like 4 hours. I pleaded with Torrey to console and distract me. It was a new moment for us. He'd never experienced one of my "pain melt downs". Unfortunately Marcel (bless his heart) had always been the one to get me through these. Torrey always the joker, rubbed my arms and quoted Marcel "...it'll be okay Mommy." : ) It was nice though, nice that he was finally therefor me.

I was very glad when the medicine began to work. For once the sleepy numbness was a welcome respite. The pain slowly receded from my aching hands, shoulders, neck, and back. The sharp stabbing pains in my knees dulled and my eyes stopped watering.

I laid in the bed listening to T's snores unable to find true sleep but euphoric that I was pain free..... for the moment. Then the alarm rang interrupting my euphoria. Reality was I needed to wake Taty. However the lingering effects of the drugs made me feel "jelloey". I roused Torrey and he headed for our daughters room. Five to ten minutes later I felt the urge to write, to recount this experience.

I grabbed pen and notebook. And here you find me as the pain returns.... a yogurt, more meds, and a glass of juice. Poised I am for another "fight" with pain.

The unexamined life is not worth living.
~Socrates

Rebuilding Issues

Today I'm suffering from allergies.  I had to run to CVS to get some Sinus/Allergy meds.  I feel like my nose is a water faucet.  It continues to run as if the handle is broken.

Torrey has slept most of the day.  He is on this really annoying schedule.  I asked him last night,  "...how are we are supposed to rebuild our relationship when one of us is always going to be sleeping?"  I mean really... yesterday he worked from 5pm to 2:30 am, he came home watched a little TV and ate.  He then proceeded to sleep till about 2pm, and then went back to work @ 4:30pm 

I am extremely frustrated but T says he works when the jets fly.  Why do the jets need to be flying @ such off hours.  I want to spend some time with my husband.  We can't re-connect this way! 

Sometimes the AF really irks me!

Working through the confusion....

I'm still having a hard time with why Torrey's still here. I know why I'm still her. I just can't see my life with out this man in it. But why is he still here? What does he see in me that compels him to stay. Why is so different now when I wasn't "enough" before?

I've tried to question him about u, about his choice to stay. he seems to be staying because I'm a"good woman". But I have always been a "good woman". Why is this Candace enough when the "2006" Candace wasn't. I don't understand!

As far as I know there's very little difference between the two. Well okay maybe the "2006" version was in a drugged stupor most of the time. Maybe just maybe that was a BIG thing- I think though that the current American population deals quite well with "drugey/drugged" spouses/partners. And well I wasn't using recreational drugs. The drugs I was on...AM on are to keep me stable, give pain relief, and give me a semblance of life.

So where does that leave me now. What does he want? What about me now that is okay? What is he satisfied with that he wasn't before? Is he going to change his mind again in another 10-15 years? I don't like that he could just change his mind about what he "needed". Why is it always about what they need! MEN!

I guess I need to be more vigilant, ask him what his needs are. What does he expect of me? What can I do to keep him focused one me? And yet I sit here and think why should I have to try so hard? I'm not the one who messed up!

Agg! how do I focus on wonderful and positive when I'm so frustrated?

We begin again...part 2-

As my new identity emerges..... from my written journal
In starting this new blog, I stride in a new direction. In my blog and my journal I have still been holding onto the past. I don't want to let go of the hurt, but now I'm moving forward. Whatever I write in this journal will now be transferred to my blog. Starting with this one...

Today I got on the computer before I laid down for bed. I know I probably should have just taken my medications and laid my behind down. First I had to go to the Mother's Board, then Facebook, then My Space. The computer is my main connection to the outside world. It's how I stayed connected in the past, inside my loneliness. Some habits can not be broken so easily. even now when I do so much more than I did in Alaska, I still find myself craving the web "contact". I was alone in this world of pain, it's weird to be visible again.

All the sudden he's kissing me when he leaves for work, he hold me when I'm lonely, he touches me with passion again. It's strange and it's wonderful. Our therapist says to look at the wonderful. It's so hard still though, so many years with out someone who cared for me. I was really all alone. Hmmm, now we start again. I thank God, but I still question the course of my life, but don't we all.

I'm supposed to be in bed....

And yet I find my self at the computer trying to make sure I don't miss the world while I lay in bad...yet again. Somehow I always manage to get on the computer before I lay down.

Today when I got on the computer I thought once again "I need to lay down" I know I probably should have just taken my meds and laid my behind down. However I had to go to the Mother's board, then to Facebook, then My Space. The computer has been my main connection to the outside world for the last 4 years. It's how I stayed connected, how I got through the pain and loneliness. Some habits can not be broken so easily. Even now when I get to move around so much more, I still find myself craving the contact.

So longing for the contact takes me into the strangeness I'm living. Now, when I've been alone for so long it's weird to be visible. When I didn't have anyone and needed someone I was totally alone. Now all the sudden he (my husband) kisses me when he leaves for work, he holds me when I'm lonely, he touches me with passion. It's strange and it's wonderful. Confusing and scary. I'm constantly wondering...is it real?

Our therapist says to look at the wonderful. Yet it's so hard, there were so many years with out someone who truly cared for me. Hmmm, now we are starting all over again. With the little touches, the hugs and the little things that I've missed so much. Even as I'm thanking God I'm questioning the course of all this... the current course of my life. But.... don't we all?

We begin again....

Time is always inching forward whether I want it to or not. Life continues whether I have a part in it or not. So I admit I must change even after so many changes. I have yet more to implement. At the suggestion of our marital therapist I'm going in a new direction. After suffering from the ill effects of re-reading my previous blog entries..... I will again begin again

In starting this new blog I will stride in this new direction that my husband and I are traveling. In my new blog I will go forward, ever forward. I have unfortunately in my blogs and in my journal been holding onto the past. Not good.

So we are going to change the direction, reverse course as it were. I was definitely trying to move forward but my thoughts and memories were strangling my progress. I'm not going to say that I'm going to stay out of the past but I will however try with all earnestness to look past those images.