The Weaver

In loving memory of my dear aunt Lorena who we lost to cancer last night. She will always be one of my favorite people and I will miss her dearly. This was one of my grandfather’s – her brother’s – favorite poems.

“The Weaver”

My life is but a weaving
Between my Lord and me
I cannot choose the colors
He worketh steadily

Oft times he weaveth sorrow
And I in follish pride
Forget he sees the upper
And I the underside

But till the loom is silent
And the shuttle ceases to fly
Will he unroll the canvas
And explain the reason why

The dark threads are as needful
In the weavers skillful hand
As the threads of gold and silver
In the pattern he has planned.

“A Picture of Pain” Poem

fibro poem

I came across this poem and wanted to share it. I totally agree with this poem. It’s so hard to describe what we go through and the pain we feel. It’s hard to put words to our daily battle. But I hold onto hope and keep working to make myself healthier, happier and more pain free. I work on this every day.

“Recovery”

“Recovery” Reblogged from Fighter Zine

I follow Fighter Zine, which is a great blog, and they posted this poem.  It’s great. It puts into words the journey I’ve been on to accept my invisible disease and to learn to manage it as best I can. Pain is a part of my life now and I’m working hard to figure out how to still live my life and have fun despite my fibromyalgia. I hope you like this poem as much as I do.

“Recovery”
By: Melissa Hernandez

The road to recovery is twisted and long
but you’ll only make it if you are determined and strong.
On your journey you may come to find a fork in the road
or a mountain to climb.
The distance is not short and very dreary;
as the days dredge on you will become weary.
But you mustn’t stop or go back to the start;
you must press on and be brave and strong of heart.
Nothing worth it comes easy,
and with everything a price must be paid.
But it is only you who can be the one to decide if you travail,
or stay in bed and hide.
The road is hard and the journey is frightful;
but with courage and strength, the adventure can be delightful.
The people you’ll meet and the places you’ll go…
all of them you may never have known.
So take it all in as you travel along;
with a skip in your step and in your heart a song.
Be not ungrateful for the challenges you face,
as they are opportunities for you to overcome
either with failure or grace.
Do not face them discouraged or blinded;
be ready to conquer, open hearted and open minded.
Learn from each challenge the lesson it teaches;
for then the power you gain will take you far beyond your reaches.

Don’t Quit Poem

I stumbled upon this poem and wanted to share it. We fibromyalgia sufferers face a tough journey filled with lots of challenges. But we can’t quit. We have to just keep putting one foot in front of the other and keep going. Keep fighting, for we are fighters after all.

Life Goes On

Robert Frost is my favorite poet and I love this quote from him. No matter what we’re facing, no matter how hard a day gets, no matter how high the pain goes, one thing always remains the same: life goes on.  The sun rises each morning and sets each night.  We have a chance for a better day with each day that comes.  We just have to hang in there.

Thankful Thursdays – Week 2 – Change

I’m doing my Thankful Thursdays writing challenge a bit different today.  I wanted to share this poem with you that Fibrozine was nice enough to post.

In my life many people have come and gone.
Most were treasures, if for a short time.
With season’s changing, or wind’s blowing, or distance growing
Many have faded as I drifted away
Change seems to happen to me a lot
It’s hard to stay in one place long.
Seasons change, wind calls, some where else beckons
With new journeys to explore.
One thing is steady for me however,
The joy that having friends like you
Has brought to my shore.
Nothing can take that away.
In my treasure chest reside a few so sweet
Who remain steady friends
No matter how often we meet
I think that will happen with me and you.
We now face change, but friendship remains
May bravery bolster your trek
May sorrow forget to follow
May the treasure of change bless you, my friend.
~Graystar Garibay-2009
I am thankful for my husband, who has stood by me through everything that fibromyalgia and all my problems before that grew into fibromyalgia.  He has been my rock through all of this. He went with me to my first acupuncture appointment and sat with me the whole session because I was afraid of the needles.  He studied up and grilled my doctor and anesthetist when I had to have a cyst removed from my wrist.  They both said they’d never been asked such good questions by patients or family members! He’s a nurse and he’s always asking the doctors he works with for recommendations about my latest batch of symptoms.   He only made fun of me a little bit when I had to have braces for the second time. Having braces in your late 20s is even less fun than as a teenager!  He cooks for me, cleans the house, puts gas in my car when I’m too tired, shops for groceries, and anything else that needs to be done.  No wonder he always feels tired and like he never has time to work on his hobby projects.  I take up a lot of his free time.  I couldn’t have made it though the last few years of chronic pain, especially the last year and a half when I was at my worst.  He is one of the main reasons I stay positive and keep fighting the pain every single day.  I fight for a better life for us.  We have been dealt a bad hand with my chronic (and invisible) illness, but we’re trying to make the best of it.  I hope we can achieve the “treasure of change” as this poem describes.

Pain Poem

Pain–Has an Element of Blank–
It cannot recollect
When it begun–or if it were
A day when it was not–

It has no Future–but itself–
Its Infinite contain
Its Past–enlightened to perceive
New Periods–of Pain.

–Emily Dickinson

I like Dickinson’s metaphor for pain as an “element of blank.”  Pain isn’t anything we can quantify or point to and see “here is pain.” Pain is unlike any other state of being.  It is not of or for anything.  It just is.  I like Dickinson’s  description of the blankness that is pain. We want to wake from pain, to leave it behind us, but we can’t. Pain becomes a part of us.  Pain changes us. Pain has no future but itself, like Dickinson writes.

Pain – My Invisible Companion

Pain. My invisible companion. Pain is always with me.  He’s either ever-present at the forefront of my consciousness, blocking my ability to see, hear or feel much of anything else, or he is lurking in the shadows, waiting to return at full strength and ruin the rest of my day.

Pain. My invisible taunter.  Pain is a trickster.  He likes to mess with my mind.  Sometimes, all of a sudden I’ll become aware that my pain isn’t so bad at that moment.  I get excited.  This is great. I’m feeling better today.  Pain likes to lure me into a sense of excitement and hope, only to rush back in at full strength, spiking my pain high and sapping my energy.  The  mental list of things I want to do while I’m feeling better is gone.  My day is lost to a sea of pain again.

Pain. My invisible enemy.  I wage a mental battle against Pain every single day.  I usually lose more ground to Pain than I gain, but I keep fighting.  I can’t let Pain win.  That is not an acceptable outcome.  So we keep up our invisible struggle for one of us to gain more control over my body than the other.  Every time I learn a new technique to battle Pain with, he comes up with a new way to hurt me back.  So we continue our battle.

Pain. My inexhaustible companion.  Pain never tires.  Pain never sleeps.  He’s always alert and ready for battle, ready to hurt me.  I, on the other hand, do not have a vast pool of energy I can tap into.  I am tired and worn down.  I hurt.  I sleep — sometimes.  I never get enough rest.  He does not know what it’s like to be tired, while I have forgotten what it feels like to be full of energy.

Pain. My enemy but part of me. I battle Pain every day, but Pain has also become a part of me. Pain is a part of who I am now, of what defines me.  I accept Pain, and yet I don’t.  I want to defeat Pain.  I want to be cured.  And yet, chronic pain has become an element of who I am now.  Pain has changed me. Pain has changed the way I think, the way I act, what I do. Pain has rewired my brain.  I can’t even think the same way as I used to thanks to Pain.  My brain works differently now.  I long and dream of a cure and yet wonder once a cure comes — and I believe it will one day — what will I be like then?  I won’t be who I was before Pain.  I won’t be who I am now.  I hope that I’ll be better.  I know I will be stronger for having gone through this.  If Pain can’t defeat me, then nothing can.

Pain. My invisible companion.  We’ll keep up our struggle for dominance for now.  One day, Pain will lose.  I will win.  Nothing else is acceptable.  Until the day I am pain-free, I will keep fighting my Pain.

Fibromyalgia Poem

I don’t know where this came from but I like it.  I especially like that it ends on the note of accepting who you are and what you need to do to have a life with fibromyalgia.

30 Things About My Invisible Illness You May Not Know

This week is National Invisible Chronic Illness Awareness Week, September 10-16, 2012.

Invisible Illness Week 2012Even when we have known a person forever there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia and TMJ Disorder

2. I was diagnosed with it in the year: 2012 for Fibromyalgia and 1998 for TMD.  I’d lived with non-stop chronic pain through my entire body for several years before I finally got the diagnosis of fibromyalgia.

3. But I had symptoms since:  1998 for TMD.  2004 for chronic pain/fibromyalgia

4. The biggest adjustment I’ve had to make is: I’ve made so many changes to myself and my life it’s hard to pick just one.  I think the biggest one would have to be to change my overachieving nature into being someone who is okay with doing as best as I can given the limits of my pain and energy.  It’s hard and I have to keep working at it to keep this outlook, but it’s a completely different outlook on life than I’ve had for the last 26 years of my life.

5. Most people assume: I’m healthy but tired and somewhat cranky.

6. The hardest part about mornings are: Leaving the comfort of my bed and heating pad to get up, get ready, and go to work.

7. My favorite medical TV show is: Body of Proof I guess.  I don’t watch a lot of real life medical shows.  I read a lot about my health and illness instead.  (My favorite TV show period is NCIS!)

8. A gadget I couldn’t live without is: my back massager.

9. The hardest part about nights are: Staying asleep for a whole 8 hours.  That rarely happens.

10. Each day I take 27 pills & vitamins.

11. Regarding alternative treatments I: couldn’t live without them.  I regularly incorporate cranial massage therapy, acupuncture, massage, homeopathy, relaxation therapy, EMDR therapy, and oestopathic treatments into my approach to handling my disease.

12. If I had to choose between an invisible illness or visible I would choose: A visible illness.  People can see it so they believe it exists.  I hate the looks of doubt I get of people who don’t believe fibromyalgia is real.  I hate having to justify why I can’t do something due to my health.  I hate that I look completely healthy when I’m in constant pain that no one can see.

13. Regarding working and career: I’ve had to cut back the number of hours I work.  I can only work 30 hour weeks now, so 8am-2:30pm every day.  I can’t do 40 hour weeks.  It’s just too much for me.  I don’t really have “career goals” any  more.  The only goals I have are for my health and my marriage.

14. People would be surprised to know: that I struggle with depression.  I am usually an upbeat, positive and optimist person.  I have to stay positive and optimist in the face of chronic pain or I would give up and throw in the towel.  Sometimes I have to fake my upbeat, postive persona until the real thing kicks in.

15. The hardest thing to accept about my new reality has been: just how many facets of my life I have to work to change and control to be able to get a handle on my fibromyalgia and learn to control the pain.

16. Something I never thought I could do with my illness that I did was: Go back to work after an 11-week medical leave of absense.  I was convinced working would be impossible for me ever again.  But I came back and I work 6 hour days now.

17. The commercials about my illness: are stupid, but they’re often the only way people have heard about fibromyalgia.  “Oh, I’ve seen those drug commercials about that.”

18. Something I really miss doing since I was diagnosed is: being able to do something, anything spontaneously.  Everything takes lots of planning with fibromyalgia.  Nothing is done easily, quickly, or without pain.

19. It was really hard to have to give up: Caffeine.  I was addicted to soda, tea and coffee.  I can’t handle caffeine at all now, it makes me sick.  I can’t drink sodas of any kind.  Even ginger ale upsets my stomach.

20. A new hobby I have taken up since my diagnosis is: Coloring.  I use crayons and color in children’s coloring books.  While I color, the pain receeds.  It’s amazing and I love it.

21. If I could have one day of feeling normal again I would: grab my husband and get on a plane to somewhere just because we could.  Go have an amazing day where money is no consideration.  I would want it to be the best day of our lives.  Something we could remember and treasure for the rest of our lives.  (Does it tell you something of how much fibromyalgia has changed my life if I tell you that I teared up while writing the answer to this one question?)

22. My illness has taught me: to ask for help when I need it.  I was never good at that before and I still find it hard now.

23. Want to know a secret? One thing people say that gets under my skin is: Oh, I hurt too. You can’t hurt that bad. Or, your pain can’t be any worse than my pain.  People talk about a bum knee or an occasional headache (headache not migraine, there’s a big difference) as if it’s the same as the pain I feel every day.  It’s not.

24. But I love it when people: That sounds awful. I don’t know how you manage. I’m so sorry.  Let me know if there’s anything I can do to help.

25. My favorite motto, scripture, quote that gets me through tough times is: I love the serenity prayer, but the thing I say most often to myself now is “You’ll learn to hang if you hang long enough.”  My grandfather always said that.  I didn’t know how true it was until I developed chronic pain/fibromyalgia.

26. When someone is diagnosed I’d like to tell them: This isn’t a death sentence.  You’re life will change, but there are good things that come out of this.  You appreciate the little things more than you ever did before.  The good days become amazing days that you don’t take for granted.  You appreciate things a lot more than you did before.  It’ll be okay, I promise.

27. Something that has surprised me about living with an illness is: just how tough and stubborn I am.  If you’d asked me as a freshman in college if I thought I could live through this I would’ve told you no.  But I keep on going.  I keep fighting.  I never give up. I’m too stubborn to give into my disease.  I keep fighting to make the best of the cards I have been dealt in life.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me a gluten free dinner to eat for a few days.  It was such a relief to not have to spend the energy on cooking something and it was comfort food which is what I needed.

29. I’m involved with Invisible Illness Week because: I have an invisble illness and I fight it every day.  Many people don’t know that I have fibromyalgia or that fibromyalgia even exists.  I’m trying to promote awareness on it with my blog and Facebook page.

30. The fact that you read this list makes me feel: loved and supported.  I don’t know what I’d do without my family, friends, and online support community.  They get me through the hard times.

To list your 30 things, click here.

“I Wish” Poem for Fibromyalgia/Chronic Pain Sufferers

Fibromyalgia Prayer/Poem

I liked this poem and wanted to share it with you.  I hope everyone has a pain free day (or as close as we ever get)!

Serenity Prayer

Serenity Prayer

God grant me the serenity
To accept the things I cannot change
Courage to change the things I can, and
Wisdom to know the difference.

Meditation

Seeking Serenity

As a woman living with fibromyalgia, I try to live by these words.  Whether its God, the Universe, or some other unknown higher force, I’ll take any help I can get in my daily struggle against fibromyalgia.  Living with fibromyalgia is about finding balance in all things. By nature, I am an overachiever who wants to give 120% in everything I do. I can’t do that anymore. I don’t have the energy to do that anymore, thanks to fibromyalgia.  I have to balance things so I have energy to do what needs to be done every day. I can’t poor all of my energy into my job. I have to have a life too. I have to accept that I can’t change this and move on. It takes courage to keep battling fibromyalgia every single day.  I don’t always have this courage and need a helping hand to find it again.  I need courage to change things about myself and my environment to lessen my pain and improve my health.  It’s a long, tough process, but it is possible.  I always ask for wisdom.  I need wisdom to know the difference between the things I can’t change and shouldn’t waste my time and energy on and those I can change and should work to change.  I don’t always make the right call on this, but I’m doing a lot better than I have in the past.  There’s still a voice inside my head demanding that I give my maximum capability on each project at work, but I ignore that voice.  My 80% still produces a better product than others in my company doing the same job I do.  And that’s okay now.  I need to save that extra bit of energy and focus so I can have a balanced, enjoyable life. So I don’t leave work and immediately collapse every day.  So I don’t spend my weekends doing nothing but resting for the work week ahead. We fibromyalgia sufferers face a long and daunting road, but if we support each other and rely on the support of those close to us, we can make the pain better. We can improve our situations and have a better quality of life.  We just need the courage to keep working at it.