Enjoy poetry and other musings by fellow Pajama Dazers
Inspired as they suffer
Emotions, no buffer
Words on page
Poet, sage
Words express
Pain, duress
Chronic Illness
--CB
Inspired as they suffer
Emotions, no buffer
Words on page
Poet, sage
Words express
Pain, duress
Chronic Illness
--CB
All compositions are copyrighted by their authors.
Poems by Charlotte Green
Kintsukuroi (The Beauty of Brokenness)
You watch me fragment
As I hit the bottom.
Shard-sharp spikes
Shattering against hard rock.
You do not judge.
You do not waiver.
You do not tell me what to do,
Or how to be.
Silently stooping to pick up pieces,
You cradle me in your hands
As if I weigh nothing,
No burden at all - a breath of air.
Your love flows over me.
Molten gold covering the cracks,
Cementing the joins,
Smoothing over chips.
I am whole again,
More beautiful than I have ever been
Because of you,
You and your golden love.
© Charlotte Green
Payback
I know you're struggling today.
You used your spoons up yesterday.
You need a rest until it passes,
Go back to bed now, don't delay.
I know you're struggling today.
You did too much and now you'll pay.
I know exactly how you suffer,
Precisely how it all gets tougher.
How you're stapled to the bed,
Ribs of iron, limbs of lead,
There's a pounding in your brain,
Your kidneys sore, your liver pained,
Your heart beats as fast as Keith Moon's drumming.
In your head, a constant humming.
The food you eat makes you feel worse,
Don't call the doctor, call a hearse!
Every whisper is a shout,
Your legs feel like they're giving out,
Your neck becomes a block of wood.
You try to sleep no but it's no good.
Hot flushes and cold sweats
But listen - you're not beaten yet.
I know you're struggling today.
I know in each and every way.
But it won't always be this way.
I promise it will be okay.
I know you're struggling today.
You struggle every single day.
Just keep on smiling through the pain,
Look for the sunshine through the rain.
And one day you and I will find
We leave this misery behind.
Won't need to struggle or give in.
One day my friend, we both will win.
© Charlotte Green
The Spoonie Prayer
Make me well,
Oh make me well.
Deliver me
From living hell.
I don't need riches,
Don't need fame,
Just want a normal life again.
I don't need sympathy or pity
Just need to stop feeling so shitty.
Don't make me talented or wise.
No bigger breasts or smaller thighs.
Don't make me beautiful or clever
Just swear I won't be ill forever.
Give me patience,
Give me hope.
Give me strength
To help me cope.
Make me well,
That's all I ask.
Is it such a testing task?
If you make me well, I promise
It will be a brand new start.
I won't waste life like I used to.
I will savour every part.
© Charlotte Green
For Anna
Do not be afraid,
It will pass.
When you truly hit the bottom
There is only one way left:
Up to the light,
Up to the air,
Up from the night,
Up from despair.
You must let the current take you.
If you fight it you will fail.
Bend with the flow and not against,
Bide your time, preserve your strength.
It will pass.
This I promise you.
Do not fear.
Fear will bind you.
It won't help you,
It will drag you deep.
Be the water,
Let it flow.
Cast off fear,
Let it go.
Even water, given time
Cuts through the hardest rock.
I know it hurts,
Hurts like hell,
But it will pass.
This I promise you.
© Charlotte Green
__________________________
Dedicated to my muse and mentor
I was truly saddened to learn of the passing of my friend, Charlie. At 88, congestive heart failure finally doused his imaginative flame. It was expected but nevertheless tragic. This man came into my life so late in his, and left an indelible impression on me. He was my muse.
I was creating a website to feature Charlie's musings when his health began to fail. I have now published the website, with his blessing, and want to share it with you. Let's keep his light burning.
Click here for Charlie's Coffeehouse
___________________________
Kintsukuroi (The Beauty of Brokenness)
You watch me fragment
As I hit the bottom.
Shard-sharp spikes
Shattering against hard rock.
You do not judge.
You do not waiver.
You do not tell me what to do,
Or how to be.
Silently stooping to pick up pieces,
You cradle me in your hands
As if I weigh nothing,
No burden at all - a breath of air.
Your love flows over me.
Molten gold covering the cracks,
Cementing the joins,
Smoothing over chips.
I am whole again,
More beautiful than I have ever been
Because of you,
You and your golden love.
© Charlotte Green
Payback
I know you're struggling today.
You used your spoons up yesterday.
You need a rest until it passes,
Go back to bed now, don't delay.
I know you're struggling today.
You did too much and now you'll pay.
I know exactly how you suffer,
Precisely how it all gets tougher.
How you're stapled to the bed,
Ribs of iron, limbs of lead,
There's a pounding in your brain,
Your kidneys sore, your liver pained,
Your heart beats as fast as Keith Moon's drumming.
In your head, a constant humming.
The food you eat makes you feel worse,
Don't call the doctor, call a hearse!
Every whisper is a shout,
Your legs feel like they're giving out,
Your neck becomes a block of wood.
You try to sleep no but it's no good.
Hot flushes and cold sweats
But listen - you're not beaten yet.
I know you're struggling today.
I know in each and every way.
But it won't always be this way.
I promise it will be okay.
I know you're struggling today.
You struggle every single day.
Just keep on smiling through the pain,
Look for the sunshine through the rain.
And one day you and I will find
We leave this misery behind.
Won't need to struggle or give in.
One day my friend, we both will win.
© Charlotte Green
The Spoonie Prayer
Make me well,
Oh make me well.
Deliver me
From living hell.
I don't need riches,
Don't need fame,
Just want a normal life again.
I don't need sympathy or pity
Just need to stop feeling so shitty.
Don't make me talented or wise.
No bigger breasts or smaller thighs.
Don't make me beautiful or clever
Just swear I won't be ill forever.
Give me patience,
Give me hope.
Give me strength
To help me cope.
Make me well,
That's all I ask.
Is it such a testing task?
If you make me well, I promise
It will be a brand new start.
I won't waste life like I used to.
I will savour every part.
© Charlotte Green
For Anna
Do not be afraid,
It will pass.
When you truly hit the bottom
There is only one way left:
Up to the light,
Up to the air,
Up from the night,
Up from despair.
You must let the current take you.
If you fight it you will fail.
Bend with the flow and not against,
Bide your time, preserve your strength.
It will pass.
This I promise you.
Do not fear.
Fear will bind you.
It won't help you,
It will drag you deep.
Be the water,
Let it flow.
Cast off fear,
Let it go.
Even water, given time
Cuts through the hardest rock.
I know it hurts,
Hurts like hell,
But it will pass.
This I promise you.
© Charlotte Green
__________________________
Dedicated to my muse and mentor
I was truly saddened to learn of the passing of my friend, Charlie. At 88, congestive heart failure finally doused his imaginative flame. It was expected but nevertheless tragic. This man came into my life so late in his, and left an indelible impression on me. He was my muse.
I was creating a website to feature Charlie's musings when his health began to fail. I have now published the website, with his blessing, and want to share it with you. Let's keep his light burning.
Click here for Charlie's Coffeehouse
___________________________
A poem by Michael Fernandez, dedicated to Pajama Daze
Pajama Daze
When feeling ill or having the chills I often look for a site to browse
Pajama Daze makes me feel great after a look around
there’s so much creativity and so much to see I am often overwhelmed
by the work put in to this great website that I’m so grateful is around.
I love their poetry and their articles some of the best in existence
who knew such a site could ever offer assistance
to those in need of a laugh or a good read whilst suffering chronic illness
that’s why I visit Pajama Daze so often and appreciate it!
I don't know of many sites that offer so much
to a chronic pain sufferer to them this relief is a must
pain is horrible and laughter is good for the soul
but Pajama Daze also offer sobering poetry and articles as well
stuff that brings you to tears as to how beautiful it is
yet it’s horrible that it’s all about chronic illness!
Michael Fernandez
www.migrainediscussions.com
____________________
Poetry by Ros Lemarchand
________________
Acceptance
To say “this illness I accept”
Is such a very hard concept
To accept my life has to change
To accept it can’t stay the same
To accept how I must now live
To try not to be negative
To accept my limitations
To lower my expectations
To accept I need to take care
To accept energy is rare
To accept I need to have rest
To pace myself and do what’s best
To accept new ways of coping
To find better understanding
To not be demanding on me
To reject those feelings guilty
To accept help on a bad day
To be honest in what I say
To accept I’ll have some bad days
And to feel denial and rage
To stop fighting against my fate
To stop my anger and my hate
To again find myself grieving
To mourn that life I’m now missing
To accept does not mean defeat
To know this illness I will beat
To accept is not giving in
But hope one day this fight I’ll win
To accept part goes to M.E.
To know it can’t take the real me!
I wish I could say “I accept”
But it is such a hard concept.
© 2013 Ros Lemarchand
____________________
Alive but not living
Alive but not living
My life has lost meaning
I feel like I`m dreaming
And want to start screaming
I think of life missing
And go into grieving
There comes some accepting
Yet I can`t help crying
Part of me is changing
There is no denying
For sure I`m not lying
Believe me I`m trying
So hard to keep breathing
Carry on believing
Not to give up hoping
For a cure I`m praying
How I hate this feeling
It`s all so frustrating
I try to keep smiling
But it`s so depressing
Survive but not living
So tired of fighting
Feel no one is helping
I`m left slowly dying.
© 2013 Ros Lemarchand
-----------------------------------------------------------------------------------------
Acceptance
To say “this illness I accept”
Is such a very hard concept
To accept my life has to change
To accept it can’t stay the same
To accept how I must now live
To try not to be negative
To accept my limitations
To lower my expectations
To accept I need to take care
To accept energy is rare
To accept I need to have rest
To pace myself and do what’s best
To accept new ways of coping
To find better understanding
To not be demanding on me
To reject those feelings guilty
To accept help on a bad day
To be honest in what I say
To accept I’ll have some bad days
And to feel denial and rage
To stop fighting against my fate
To stop my anger and my hate
To again find myself grieving
To mourn that life I’m now missing
To accept does not mean defeat
To know this illness I will beat
To accept is not giving in
But hope one day this fight I’ll win
To accept part goes to M.E.
To know it can’t take the real me!
I wish I could say “I accept”
But it is such a hard concept.
© 2013 Ros Lemarchand
____________________
Alive but not living
Alive but not living
My life has lost meaning
I feel like I`m dreaming
And want to start screaming
I think of life missing
And go into grieving
There comes some accepting
Yet I can`t help crying
Part of me is changing
There is no denying
For sure I`m not lying
Believe me I`m trying
So hard to keep breathing
Carry on believing
Not to give up hoping
For a cure I`m praying
How I hate this feeling
It`s all so frustrating
I try to keep smiling
But it`s so depressing
Survive but not living
So tired of fighting
Feel no one is helping
I`m left slowly dying.
© 2013 Ros Lemarchand
-----------------------------------------------------------------------------------------
Poetry by Becca Doss
"Under my Skin"
There are lots of things that get under my skin.
When people curse the name of God or the country that they’re living in–
When children are hurt and have no choice but to walk around on eggshells and pins–
When justice is served from an outside party instead of within–
Politicians whose rabble seems to have no end.
And talk show doctors who sell out to fit in.
And professionals testing extensively and expensively despite not knowing where to begin.
And celebrities who jump on the bandwagon for an award–for us, defeat, for them, a win.
Assertions that we’ll never live fully again.
Ignoring the reality of our minds’ din.
The clinging and clanging of pencils and pens,
And paper and lamplights and city trash bins.
All enough to make our minds whirl and heads spin.
And they wonder why such commonplace things get under my skin.
Perhaps it’s worthwhile to consider again–
All of these things get under my skin
Because that’s where it is–under my skin.
Sure, outwardly I may look fine but you see the outside, not in.
The war rages deep, under my skin.
The aching and pain and confusion and rain all live together under my skin.
Because that’s where it is–under my skin.
It attacks and desires for me to give in,
But I refuse to obey what’s under my skin.
Yes, there are days I only stay in.
And yes, there are times I feel I can’t win.
But my God is stronger–the Beginning and End.
So how can I let this monster under my skin
Make me doubt enough to give up or give in?
Since my God is the Beginning and the End,
I have hope that He’ll carry me through, yet again.
He’s proved it immeasurably through thick and thin–
How naive would I be to think He won’t still win?
My struggles may seem insurmountable and I don’t know when,
But I WILL get back to my full life again.
I will one day skate for hours on end.
I will walk my dog several times ’round the bend.
I will drive my car around town, with windows down, and enjoy the wind.
I don’t have a mind that is satisfied with ‘mend’–
I operate on principles of ‘healing completely’–with God on my team, worldly answers I’ll transcend.
Because I do not accept this diminished functionality as my story’s end.
God’s writing my book as I travel the bends,
And the twists and the turns and the bumps and amends.
My story’s not over–there’s still more to go–more than I can comprehend.
But rest assured, I am a fighter, my friends.
And fight on I will, till God writes ‘The End’
Copyright Becca Doss 2013
________________
“I will make it”
I don’t believe I caught your name
But maybe that’s on purpose.
It leaves you free to justify
your damage, ‘neath my surface.
I don’t believe I caught your name,
but understand, you see,
even without a “My name is”
you’re no stranger to me.
Oh, you may think by hiding out
for days and months and years,
you forced me to find different names and reasons
for my tears.
A pill for this, a shot for that,
but that’s a scary game.
Amidst my drastic efforts to heal,
you waged war, all the same.
I don’t believe I caught your name,
but you don’t have to tell it.
I’ve names enough for you, so bad
Satan himself is jealous.
Regardless of my circumstance,
And my “you-inflicted” pain–
I’ll tell you once, right here and now–
You don’t deserve a name.
A name delegates power, you see,
and that is not okay–
because I know deep in my bones,
you will be gone someday.
You might destroy my body now,
Go ahead, I can take it.
I’ll endure this pain and suffering,
Because guess what–
I will make it.
Copyright Becca Doss 2013
________________
"I am a patient"
I am a patient
but I am not patient.
I was patient far too long–
patience never worked to my benefit–
because I am a patient.
I am a patient
who is sick and tired of
being told I’m not sick and tired
when half the reason I’m sick and tired
is because I was patient.
I am a patient
who has been exhaustively quiet,
accepting your words because you wear a white coat
and have letters after your name
and speak loud words in a big voice.
I am a patient
who is not sitting by any longer,
waiting and wishing you’ll have an answer.
That would be patient–
but I am not patient.
I am a patient
with rights, an opinion, and the ability
to think for myself and know how I feel.
You have the knowledge but I have experience
because I am a patient.
I am a patient–
a persevering patient–
who will not stop searching
until the right answer is found and course marked–
maybe then I’ll be patient.
Because after that happens, I won’t be a patient.
Copyright Becca Doss 2013
------------------------------------------------------------------------------------------------------------
There are lots of things that get under my skin.
When people curse the name of God or the country that they’re living in–
When children are hurt and have no choice but to walk around on eggshells and pins–
When justice is served from an outside party instead of within–
Politicians whose rabble seems to have no end.
And talk show doctors who sell out to fit in.
And professionals testing extensively and expensively despite not knowing where to begin.
And celebrities who jump on the bandwagon for an award–for us, defeat, for them, a win.
Assertions that we’ll never live fully again.
Ignoring the reality of our minds’ din.
The clinging and clanging of pencils and pens,
And paper and lamplights and city trash bins.
All enough to make our minds whirl and heads spin.
And they wonder why such commonplace things get under my skin.
Perhaps it’s worthwhile to consider again–
All of these things get under my skin
Because that’s where it is–under my skin.
Sure, outwardly I may look fine but you see the outside, not in.
The war rages deep, under my skin.
The aching and pain and confusion and rain all live together under my skin.
Because that’s where it is–under my skin.
It attacks and desires for me to give in,
But I refuse to obey what’s under my skin.
Yes, there are days I only stay in.
And yes, there are times I feel I can’t win.
But my God is stronger–the Beginning and End.
So how can I let this monster under my skin
Make me doubt enough to give up or give in?
Since my God is the Beginning and the End,
I have hope that He’ll carry me through, yet again.
He’s proved it immeasurably through thick and thin–
How naive would I be to think He won’t still win?
My struggles may seem insurmountable and I don’t know when,
But I WILL get back to my full life again.
I will one day skate for hours on end.
I will walk my dog several times ’round the bend.
I will drive my car around town, with windows down, and enjoy the wind.
I don’t have a mind that is satisfied with ‘mend’–
I operate on principles of ‘healing completely’–with God on my team, worldly answers I’ll transcend.
Because I do not accept this diminished functionality as my story’s end.
God’s writing my book as I travel the bends,
And the twists and the turns and the bumps and amends.
My story’s not over–there’s still more to go–more than I can comprehend.
But rest assured, I am a fighter, my friends.
And fight on I will, till God writes ‘The End’
Copyright Becca Doss 2013
________________
“I will make it”
I don’t believe I caught your name
But maybe that’s on purpose.
It leaves you free to justify
your damage, ‘neath my surface.
I don’t believe I caught your name,
but understand, you see,
even without a “My name is”
you’re no stranger to me.
Oh, you may think by hiding out
for days and months and years,
you forced me to find different names and reasons
for my tears.
A pill for this, a shot for that,
but that’s a scary game.
Amidst my drastic efforts to heal,
you waged war, all the same.
I don’t believe I caught your name,
but you don’t have to tell it.
I’ve names enough for you, so bad
Satan himself is jealous.
Regardless of my circumstance,
And my “you-inflicted” pain–
I’ll tell you once, right here and now–
You don’t deserve a name.
A name delegates power, you see,
and that is not okay–
because I know deep in my bones,
you will be gone someday.
You might destroy my body now,
Go ahead, I can take it.
I’ll endure this pain and suffering,
Because guess what–
I will make it.
Copyright Becca Doss 2013
________________
"I am a patient"
I am a patient
but I am not patient.
I was patient far too long–
patience never worked to my benefit–
because I am a patient.
I am a patient
who is sick and tired of
being told I’m not sick and tired
when half the reason I’m sick and tired
is because I was patient.
I am a patient
who has been exhaustively quiet,
accepting your words because you wear a white coat
and have letters after your name
and speak loud words in a big voice.
I am a patient
who is not sitting by any longer,
waiting and wishing you’ll have an answer.
That would be patient–
but I am not patient.
I am a patient
with rights, an opinion, and the ability
to think for myself and know how I feel.
You have the knowledge but I have experience
because I am a patient.
I am a patient–
a persevering patient–
who will not stop searching
until the right answer is found and course marked–
maybe then I’ll be patient.
Because after that happens, I won’t be a patient.
Copyright Becca Doss 2013
------------------------------------------------------------------------------------------------------------
Poetry by Michael Fernandez
Dark Embrace
The pain chips away at my prosperity like dedicated mason’s hammer to a slab of granite,
this life isn’t at all the way I had planned it,
I sure wouldn’t ask for this neurological blunder for anyone but myself,
how could one be so cruel as to wish this torture upon someone else?
I sure wonder at times how people are so selfish, then I remember my own personality prior to all of this, I was just as ignorant and living carefree, a blissful time that I hope returns eventually!
I mean the carefree portion, not the ignorance, I’ve learned from this long and horrid experience.
My life is in shambles, my writing progress slowed, my bones ache, and my heart is growing cold, who can I look up to at a time like this from down in this deep and dark abyss?
Will it be another advocate, patient, or doctor? A friend, psychologist, or even my mother?
Who knows how long the chronic illness will last our only chance to enjoy life is to have a blast,
no not in your future enjoy it right now, as tomorrow is never guaranteed so let’s embrace it now.
------
The Five Migraines of Torture
Five migraines means five separate nightmares entangling my brain,
throughout my day I was tormented and driven insane!
Not once, not twice, but five separate times I literally feel like I’ve been forced into chains,
this Churg Strauss Syndrome squeezing at my lungs, put fury in my veins!
For me it must be more than one though, the Churg-Strauss pain was not enough of a burden,
of course many a migraine came along to make the situation far more urgent.
Who can say why I suffer so much perhaps I’m going through a rite of passage,
or this could simply be life lived like a savage, treated as a drug seeker by the pharmacy, it’s quite embarrassing at times-
especially with two of these incurable diseases.
When will I possibly make myself well, perhaps the disease modifiers will benefit me greatly,
we’ll have to see in just a few weeks how my body reacts, hopefully it’ll take the medication well as such a feat would be quite swell!
My blood pressure is absolutely out of control, hopefully over the next week we can tame that beast!
It’s amazing how much one’s heart racing along with chronic pain can bring you so close to dying,
today in order to avoid a heart attack or stroke I went triptan free and damn it sure showed,
immense bouts of pain and immobility followed.
My body still aches but my family is here to tend to my broken body and wipe away my tears,
my dog will cuddle with me and I'll write a poem then all will be well and my mind in the zone.
My migraine attack is still in progress but have no worries I’m used to about at least a 7,
unfortunately that’s part of my daily life but I still manage to smile despite the rough life!
So please join me in having some laughter at chronic pain and try to enjoy your day right in its ugly face!
If you can’t manage to break your depression contact me for a chat session,
We’ll work things out, find a solution, if not at least provide some you some comfort.
I’m here for you and all those with chronic pain you dont need to subscribe to call my name!
Whether rich or poor, man or woman, anonymous or named I’m willing to talk it’s necessary that we hold each other up.
This chronic pain community is one of great love and care we see this through WordPress, Twitter, and Facebook!
------
Invisible Illness Advocate Til the Day I Die
The ache in my bones produces a poem every once in a while,
whilst the inspiration is pleasant to some, it’s torturously beautiful to those who know what pain I deal with daily in style.
My legs are inflamed, fingers like sausages, and my arms feeling shattered,
I’m struggling to eek out the proper terms to describe my agony as though it truly mattered.
I know some people will read this and appreciate my words, but the truth is those not suffering from chronic pain this may just seem absurd.
Who oh who will unravel my mysterious pain and give me a solution so I can live healthy and happily again,
will it be a the neurologist, the primary care doctor, or the rheumatologist?
I sure hope one of them will crack my code and acknowledge it.
The question is when and will the FDA approve the drug to swallow my pain,
it seems as if with regulations they’ve gone insane, patients are treated like criminals for being ill and simply going to pick up their pills!
In what kind of civilized world are people forced to import medication that isn’t approved by their legislation?
I suppose in this one as that’s the case for more than 1 patient I know whose meds are help up by the FDA.
When oh when will our government learn that healthcare is essential and migraines are a problem,
probably not until the migraine support groups lobby them.
Thanks Headache on the Hill and to all those causes that fight for the rights of those in ruin due to their medical distress,
chronic pain needs to be recognized not only when in a wheelchair this countries perspective of handicap is a real mess!
Invisible illness no more as us advocates, patients, bloggers, caregivers, family, and friends all come together to remove the invisibility cloak that has so long hidden migraine from the public eye!
I shall fight for that goal until the very day I die.
---------------------------------------------------------------------------------------------------
The pain chips away at my prosperity like dedicated mason’s hammer to a slab of granite,
this life isn’t at all the way I had planned it,
I sure wouldn’t ask for this neurological blunder for anyone but myself,
how could one be so cruel as to wish this torture upon someone else?
I sure wonder at times how people are so selfish, then I remember my own personality prior to all of this, I was just as ignorant and living carefree, a blissful time that I hope returns eventually!
I mean the carefree portion, not the ignorance, I’ve learned from this long and horrid experience.
My life is in shambles, my writing progress slowed, my bones ache, and my heart is growing cold, who can I look up to at a time like this from down in this deep and dark abyss?
Will it be another advocate, patient, or doctor? A friend, psychologist, or even my mother?
Who knows how long the chronic illness will last our only chance to enjoy life is to have a blast,
no not in your future enjoy it right now, as tomorrow is never guaranteed so let’s embrace it now.
------
The Five Migraines of Torture
Five migraines means five separate nightmares entangling my brain,
throughout my day I was tormented and driven insane!
Not once, not twice, but five separate times I literally feel like I’ve been forced into chains,
this Churg Strauss Syndrome squeezing at my lungs, put fury in my veins!
For me it must be more than one though, the Churg-Strauss pain was not enough of a burden,
of course many a migraine came along to make the situation far more urgent.
Who can say why I suffer so much perhaps I’m going through a rite of passage,
or this could simply be life lived like a savage, treated as a drug seeker by the pharmacy, it’s quite embarrassing at times-
especially with two of these incurable diseases.
When will I possibly make myself well, perhaps the disease modifiers will benefit me greatly,
we’ll have to see in just a few weeks how my body reacts, hopefully it’ll take the medication well as such a feat would be quite swell!
My blood pressure is absolutely out of control, hopefully over the next week we can tame that beast!
It’s amazing how much one’s heart racing along with chronic pain can bring you so close to dying,
today in order to avoid a heart attack or stroke I went triptan free and damn it sure showed,
immense bouts of pain and immobility followed.
My body still aches but my family is here to tend to my broken body and wipe away my tears,
my dog will cuddle with me and I'll write a poem then all will be well and my mind in the zone.
My migraine attack is still in progress but have no worries I’m used to about at least a 7,
unfortunately that’s part of my daily life but I still manage to smile despite the rough life!
So please join me in having some laughter at chronic pain and try to enjoy your day right in its ugly face!
If you can’t manage to break your depression contact me for a chat session,
We’ll work things out, find a solution, if not at least provide some you some comfort.
I’m here for you and all those with chronic pain you dont need to subscribe to call my name!
Whether rich or poor, man or woman, anonymous or named I’m willing to talk it’s necessary that we hold each other up.
This chronic pain community is one of great love and care we see this through WordPress, Twitter, and Facebook!
------
Invisible Illness Advocate Til the Day I Die
The ache in my bones produces a poem every once in a while,
whilst the inspiration is pleasant to some, it’s torturously beautiful to those who know what pain I deal with daily in style.
My legs are inflamed, fingers like sausages, and my arms feeling shattered,
I’m struggling to eek out the proper terms to describe my agony as though it truly mattered.
I know some people will read this and appreciate my words, but the truth is those not suffering from chronic pain this may just seem absurd.
Who oh who will unravel my mysterious pain and give me a solution so I can live healthy and happily again,
will it be a the neurologist, the primary care doctor, or the rheumatologist?
I sure hope one of them will crack my code and acknowledge it.
The question is when and will the FDA approve the drug to swallow my pain,
it seems as if with regulations they’ve gone insane, patients are treated like criminals for being ill and simply going to pick up their pills!
In what kind of civilized world are people forced to import medication that isn’t approved by their legislation?
I suppose in this one as that’s the case for more than 1 patient I know whose meds are help up by the FDA.
When oh when will our government learn that healthcare is essential and migraines are a problem,
probably not until the migraine support groups lobby them.
Thanks Headache on the Hill and to all those causes that fight for the rights of those in ruin due to their medical distress,
chronic pain needs to be recognized not only when in a wheelchair this countries perspective of handicap is a real mess!
Invisible illness no more as us advocates, patients, bloggers, caregivers, family, and friends all come together to remove the invisibility cloak that has so long hidden migraine from the public eye!
I shall fight for that goal until the very day I die.
---------------------------------------------------------------------------------------------------
Do You Still See Me? by Chrystal Ann
What do you see when you look at me?
Do you see the me that I used to be?
Or do you see the disease that has consumed me?
Do you see the need for me to be free?
Free from your rumors; from your disbelief?
Do you see the pain my CVS has caused me?
How can I make all of these people see?
Just how much this really hurts me?
Why can't they just see
How hard I'm trying to be
Everything everyone expected of me?
What do you see when you look at me?
Do you see the me that I want you to see?
Or do you see the CVS that has destroyed me?
--------------------------------------------------------------------------------------------------------------------------------
Do you see the me that I used to be?
Or do you see the disease that has consumed me?
Do you see the need for me to be free?
Free from your rumors; from your disbelief?
Do you see the pain my CVS has caused me?
How can I make all of these people see?
Just how much this really hurts me?
Why can't they just see
How hard I'm trying to be
Everything everyone expected of me?
What do you see when you look at me?
Do you see the me that I want you to see?
Or do you see the CVS that has destroyed me?
--------------------------------------------------------------------------------------------------------------------------------
Poem by Topfuelerdj
I PLOWED THE DUST N NOW I PAY
THERE WAS ENOUGH 2 GROW SOME HAY
N NOW I LAY IN BED 2 DAY
I WISH THE PAIN WOULD GO AWAY
-----------------------------------------------------------------------------------------
Poetry by Davis Eowyn (c) 2013
STRUGGLE STREET
My mate lives on “Struggle street”
Does not get enough to eat
Scrabbles deep among supermarket bins
For the odd dented baked beans tins
Clops around in holey scuffed shoes
Patched up with yesterdays news
He really needs a nice warm coat
To protect his scrawny body from being smote
Against northerly winds of poverty that blow so cold
Making his young face grow prematurely old
Powers that be cast their judgmental eye and sent
him for a tick box assessment after a works accident
Kicked him off his ESA
And forced him instead to claim JSA
Made him pay Bedroom tax
Refuting all plausible facts
My mate lives on Struggle street
Eking out his meagre ends to meet
While his government make him magically disappear
As they enjoy their high life of Champagne and Cheer
----
ADDRESS
I want the chance to address
The right Honourable IDS
To get right in his face
Ask him to set out his case
Why?
I want a chance to request
the Right Honourable IDS
explain to me
With his false “piety”
Why?
I want him under duress
That right honourable IDS
to see the suffering he has caused
The poor and the sick with his new laws
Why?
How does it feel IDS
To wade through your troubled mess
Up to your neck in the flood
Of dead , broken Britain’s blood
Why??
-----------------------------------------------------------------------------------------
Poetry by M. Pettrigrew
SCARS
This brain, my brain
Reveals an unwanted, uninvited stain
Stealthy invaders placed an ugly mark
Though visually unseen, it's there...a permanent scar.
A tattoo, if you will
An indelible marking, perplexing until
Courageous, yet daunting intervention begins
Presenting theoretical ideas, invasive needles and pins.
The monster's mastery takes hold, you see...
Internally stalking, exploring ways to manipulate me
Wicked, determined to strike and knock me down
A bully in hiding, deploying trickery like a devious clown.
This brain, my brain
With this extraordinary, devastating stain
Brings clarity, unexpected strength, possibility
Now, determined, striving to re-define my disability.
----
SHELLS
We are the smallest
Shells not found until
Hardened over grit
Sculpted in truth
As grains of sand
Engrave the soul
Secret pearl masks
Hidden tales, love
Pieces left behind
Magnificent journey
Unique metamorphosis
Memories culled
Re-arranged, displaced
Longing for the shore
----
OVERWHELMED
The mess on my bed
Is the mess in my head …
Chronic disarray
Dreadful habits unshed
Accumulating things unsaid, unread...
Swirling melee
Purge, to cleanse my purpose said
Out loud and in my head...
Again, I'll disobey
----
CHAIRS
Here I sit
in a chair made of wood -
wooden legs, I can sit upon
and rise up from whenever I want to.
Surrounded by others
who also sit
in chairs like mine, made of wood -
with wooden legs.
The others sit in chairs with steel wheels
instead of wooden legs.
With motorized knobs directing where they go.
The one's who sit in wheels
have legs, and feet of their own - like mine.
Their legs used to be like mine -
functional...sometime ago.
Now, their legs are problematic - useless.
Legs which feel like wood,
wet noodles, fire, painful needles, atrophied and stiff...
yet, here they sit - with me
in chairs of different means, but of similar purpose.
Together, we gather in our chairs and we sit,
talk, smile, nod and understand
for the same reason, sharing this disease
together, members of this exclusive club
no one has applied for.
----
ELEGY FOR A MOUSEKETEER
(a tribute to Annette Funicello)
I didn't exist...not yet
when she smiled
donning black felt mouse ears
black and white images on
Zenith television sets
viewed by millions
in happy homes
adored - all American
a member of the kiddie club.
I didn't exist.. not quite
when she smiled
donning swimsuits and surfboards
colorful, sunny images in
movie theaters
viewed by millions
of happy, hopeful teens
admired - girl next door
a member of the boomer club.
I met her after school and Sunday evenings
and I smiled
in re-runs of black felt mouse ears
and beach blanket fun on a
Sony television in the playroom
viewed by me - only me
happy, healthy, hopeful - young
timeless?
a member of whose club now?
I couldn't comprehend the pain
when she smiled
donning leg braces and a cane
black and white images in
print, colorful in life
on television sets
viewed by millions
of distraught boomer mouseketeers
A member of the disabled club.
I exist - I know her now
bittersweet death, understanding
yet, we smile
donning chairs with wheels, braces, canes
black and white - and color images in
hearts and minds
embraced by millions
of boomer mouseketeers,
generation X, Y...and me
a fellow member of the MS club - MSketeers.
----
GOODBYE AND GOOD LUCK
It's amazing, it's incredible
How and why it's come to this
This blazing, this indelible
ink spot I won't miss........or will I?
Who are you, who were you?
Why did I turn and close my eyes?
Through my love drunk window I accepted the view
So, it's really no surprise
Goodbye and good luck
You'll need it my dear
I don't really give a f**k
because my conscience is clear........or is it?
Goodbye and good luck
What comes around goes around
How does it feel to be abandoned, stuck
in solitude, your cowardly head stuck in the ground
wondering if you'll ever be found...
It's amazing, it's incredible
How and why it's come to pass
I've gained clarity, you're so readable
This drama will be my last.
Who are you, who were you?
I knew it wouldn't last
The clues the clues, OH, those obvious clues
I'll heal, I'll move on and, I'll put this in the past
Goodbye and good luck
Thank God, it's truly the end
Still, each feather you pluck from me
is painful, I cringe, but I won't bend
Unto you my darling, this message I send.......or will I?
Goodbye and good luck
You'll need it, you'll see
Crawling out of this mire, this muck
Out from you and me.
----
CICADAS
Aerial assembly - looming in lofty arboreta
Rhythmic...symphonic, yet shrill in sound
Summer's siren - high in pitch, a vibrating trill
A conclave - a warning - or is this worship magnified?
Constant and clear in tempo...somewhat pleading in tone
Music composed by the dutiful male
An insect to squash would squelch, mislead
Curtailing nature's short lived euphony.
Summer begs - it calls - the cicadas do appear
A life purpose unlike other creatures
Comprehending, composing, communicating
Mysterious secrets we'll not know.
Random - fleeting is their raucous existence
Without caveat or memorial they disappear
Leaving behind odd, deafening silence, until
Man and creature resume the familiar.
In ripening months, when cicadas come, engage
Reflect - appreciate guttural concept of performance
Contemplate purpose, unique and always changing
Evolutionary life-force, audible even after departure, death
Never finite...instead, cyclical renewal
When summer begs.
----
GIFTS ~ FROM MY GRANDMOTHER
These treasures
images untold
my heart conceals their worth
and holds,
in agonizing wonder
workings of my mind.
Virgin gems,
these gifts on loan,
not my own,
demand release from hoarding,
to seek another mind
on which to play.
Another measure
of a treasure,
again released
returns to me.
----
FOOLISH DESIRE
What the hell am I expecting?
What the hell am I doing?
Showing a side of myself...so unbecoming
Who, besides myself am I fooling?
I'm guessing no one...
My heart, my body seems to be testing
Examining physically, mentoring mentally.
The wants, the needs...delusional desires conflicting
Who, besides myself ignores this absurdity?
I'm guessing you do...
----
MAGNETIC TRAVELS
Resonating, familiar routine without
hesitation - the machines call out.
Waves unseen yet absorbing me, calculating
almost tangible waves are audible
keeping time, tempo, inside this cylinder.
Frenetic knock-about increasing, growing louder
in my imagination - anxiety,
rapid heart beat and quick in breath -
focus, relax, eyes wide shut - for now -
Thump, thump, thump - tic, tic, tic - buzz, buzz, buzz
A rave or a deafening techno concert is
where I am - in essence - in both sound and feeling.
The side to side, up and down movements
frantic, all consuming, magnetic in the diagnostic
travels within me and machine. Reluctant to participate,
resigning to games of science, I blend in.
Click, click, click - beep, beep, beep - knock, knock, knock
I imagine an image, anxious imagination
spinning, acting out over something beyond
my control in the first place! Traveling annually
with magnets is brief, merely a day-trip, yet mandatory.
Reveals a side of me unbecoming, conflicting with my portrait
visibly, outwardly, seen by you.
Infuse my color with contrast - enhance, magnify, prove.
And it is proven, according to the magnets - and my travels
in this cylinder machine - with their intimate pictures of me.
----
THE TEST
The test is a mirror...
Every test is a curious mirror
Reflecting confidence and truth
Or, lack thereof.
The test is a mirror...
Displaying naked realism of who we are
Exposing vulnerabilities of who we are not
Or, who we wish to be.
The test is a mirror...
Prohibiting facade and masquerade
Enforcing society's blueprint of conformity
Or, simply guiding our true self.
The test is a mirror...
Unwavering, without grace of grading on a curve
Prodding, quizzes encourage fearful insight
Or, maybe it is only a ruse.
The test is a mirror...
We are our own professors
Posting grades of pass or fail to ourselves
Yet, we take and re-take the same exam...
What have we learned?
--------------------------------------------------------------------------------------------------------------------------------
This brain, my brain
Reveals an unwanted, uninvited stain
Stealthy invaders placed an ugly mark
Though visually unseen, it's there...a permanent scar.
A tattoo, if you will
An indelible marking, perplexing until
Courageous, yet daunting intervention begins
Presenting theoretical ideas, invasive needles and pins.
The monster's mastery takes hold, you see...
Internally stalking, exploring ways to manipulate me
Wicked, determined to strike and knock me down
A bully in hiding, deploying trickery like a devious clown.
This brain, my brain
With this extraordinary, devastating stain
Brings clarity, unexpected strength, possibility
Now, determined, striving to re-define my disability.
----
SHELLS
We are the smallest
Shells not found until
Hardened over grit
Sculpted in truth
As grains of sand
Engrave the soul
Secret pearl masks
Hidden tales, love
Pieces left behind
Magnificent journey
Unique metamorphosis
Memories culled
Re-arranged, displaced
Longing for the shore
----
OVERWHELMED
The mess on my bed
Is the mess in my head …
Chronic disarray
Dreadful habits unshed
Accumulating things unsaid, unread...
Swirling melee
Purge, to cleanse my purpose said
Out loud and in my head...
Again, I'll disobey
----
CHAIRS
Here I sit
in a chair made of wood -
wooden legs, I can sit upon
and rise up from whenever I want to.
Surrounded by others
who also sit
in chairs like mine, made of wood -
with wooden legs.
The others sit in chairs with steel wheels
instead of wooden legs.
With motorized knobs directing where they go.
The one's who sit in wheels
have legs, and feet of their own - like mine.
Their legs used to be like mine -
functional...sometime ago.
Now, their legs are problematic - useless.
Legs which feel like wood,
wet noodles, fire, painful needles, atrophied and stiff...
yet, here they sit - with me
in chairs of different means, but of similar purpose.
Together, we gather in our chairs and we sit,
talk, smile, nod and understand
for the same reason, sharing this disease
together, members of this exclusive club
no one has applied for.
----
ELEGY FOR A MOUSEKETEER
(a tribute to Annette Funicello)
I didn't exist...not yet
when she smiled
donning black felt mouse ears
black and white images on
Zenith television sets
viewed by millions
in happy homes
adored - all American
a member of the kiddie club.
I didn't exist.. not quite
when she smiled
donning swimsuits and surfboards
colorful, sunny images in
movie theaters
viewed by millions
of happy, hopeful teens
admired - girl next door
a member of the boomer club.
I met her after school and Sunday evenings
and I smiled
in re-runs of black felt mouse ears
and beach blanket fun on a
Sony television in the playroom
viewed by me - only me
happy, healthy, hopeful - young
timeless?
a member of whose club now?
I couldn't comprehend the pain
when she smiled
donning leg braces and a cane
black and white images in
print, colorful in life
on television sets
viewed by millions
of distraught boomer mouseketeers
A member of the disabled club.
I exist - I know her now
bittersweet death, understanding
yet, we smile
donning chairs with wheels, braces, canes
black and white - and color images in
hearts and minds
embraced by millions
of boomer mouseketeers,
generation X, Y...and me
a fellow member of the MS club - MSketeers.
----
GOODBYE AND GOOD LUCK
It's amazing, it's incredible
How and why it's come to this
This blazing, this indelible
ink spot I won't miss........or will I?
Who are you, who were you?
Why did I turn and close my eyes?
Through my love drunk window I accepted the view
So, it's really no surprise
Goodbye and good luck
You'll need it my dear
I don't really give a f**k
because my conscience is clear........or is it?
Goodbye and good luck
What comes around goes around
How does it feel to be abandoned, stuck
in solitude, your cowardly head stuck in the ground
wondering if you'll ever be found...
It's amazing, it's incredible
How and why it's come to pass
I've gained clarity, you're so readable
This drama will be my last.
Who are you, who were you?
I knew it wouldn't last
The clues the clues, OH, those obvious clues
I'll heal, I'll move on and, I'll put this in the past
Goodbye and good luck
Thank God, it's truly the end
Still, each feather you pluck from me
is painful, I cringe, but I won't bend
Unto you my darling, this message I send.......or will I?
Goodbye and good luck
You'll need it, you'll see
Crawling out of this mire, this muck
Out from you and me.
----
CICADAS
Aerial assembly - looming in lofty arboreta
Rhythmic...symphonic, yet shrill in sound
Summer's siren - high in pitch, a vibrating trill
A conclave - a warning - or is this worship magnified?
Constant and clear in tempo...somewhat pleading in tone
Music composed by the dutiful male
An insect to squash would squelch, mislead
Curtailing nature's short lived euphony.
Summer begs - it calls - the cicadas do appear
A life purpose unlike other creatures
Comprehending, composing, communicating
Mysterious secrets we'll not know.
Random - fleeting is their raucous existence
Without caveat or memorial they disappear
Leaving behind odd, deafening silence, until
Man and creature resume the familiar.
In ripening months, when cicadas come, engage
Reflect - appreciate guttural concept of performance
Contemplate purpose, unique and always changing
Evolutionary life-force, audible even after departure, death
Never finite...instead, cyclical renewal
When summer begs.
----
GIFTS ~ FROM MY GRANDMOTHER
These treasures
images untold
my heart conceals their worth
and holds,
in agonizing wonder
workings of my mind.
Virgin gems,
these gifts on loan,
not my own,
demand release from hoarding,
to seek another mind
on which to play.
Another measure
of a treasure,
again released
returns to me.
----
FOOLISH DESIRE
What the hell am I expecting?
What the hell am I doing?
Showing a side of myself...so unbecoming
Who, besides myself am I fooling?
I'm guessing no one...
My heart, my body seems to be testing
Examining physically, mentoring mentally.
The wants, the needs...delusional desires conflicting
Who, besides myself ignores this absurdity?
I'm guessing you do...
----
MAGNETIC TRAVELS
Resonating, familiar routine without
hesitation - the machines call out.
Waves unseen yet absorbing me, calculating
almost tangible waves are audible
keeping time, tempo, inside this cylinder.
Frenetic knock-about increasing, growing louder
in my imagination - anxiety,
rapid heart beat and quick in breath -
focus, relax, eyes wide shut - for now -
Thump, thump, thump - tic, tic, tic - buzz, buzz, buzz
A rave or a deafening techno concert is
where I am - in essence - in both sound and feeling.
The side to side, up and down movements
frantic, all consuming, magnetic in the diagnostic
travels within me and machine. Reluctant to participate,
resigning to games of science, I blend in.
Click, click, click - beep, beep, beep - knock, knock, knock
I imagine an image, anxious imagination
spinning, acting out over something beyond
my control in the first place! Traveling annually
with magnets is brief, merely a day-trip, yet mandatory.
Reveals a side of me unbecoming, conflicting with my portrait
visibly, outwardly, seen by you.
Infuse my color with contrast - enhance, magnify, prove.
And it is proven, according to the magnets - and my travels
in this cylinder machine - with their intimate pictures of me.
----
THE TEST
The test is a mirror...
Every test is a curious mirror
Reflecting confidence and truth
Or, lack thereof.
The test is a mirror...
Displaying naked realism of who we are
Exposing vulnerabilities of who we are not
Or, who we wish to be.
The test is a mirror...
Prohibiting facade and masquerade
Enforcing society's blueprint of conformity
Or, simply guiding our true self.
The test is a mirror...
Unwavering, without grace of grading on a curve
Prodding, quizzes encourage fearful insight
Or, maybe it is only a ruse.
The test is a mirror...
We are our own professors
Posting grades of pass or fail to ourselves
Yet, we take and re-take the same exam...
What have we learned?
--------------------------------------------------------------------------------------------------------------------------------
Shannon's Poetry and Writing
Everybody by Shannon
Everybody deserves love, respect, and honesty
Does not matter if it is from a parent, sibling, or spouse
And if it is co-worker you still deserve respect and honesty
No matter the relationship
Communication is important
Communication keeps the door open
Without communication the door slams shut and is locked
Be true
Be honest
Be loving
Be caring
Once that key locks the door
The key is lost
One will never know if it will be found
As there is no metal decor around
Gifts maybe fine and dandy
But true love is what matters
The gifts collect dust and are just there
Showing one there loved is the most important thing one can do
Love is love and gift don’t matter
If you find your true love they will show you with words and actions
In the end it’s the little things that matter
Not the gifts that sit and collect dust
----
Ups and Downs by Shannon
Yesterday went very well
I was sad to see you go
You went to go shoppin’
Then I found my heart a-hoppin’
Missing you
Wishing you were home
Sitting by my side having so much fun doing puzzles
Twas time for bed
Later to find you holding my arm
It’s been so long
Way too long
Since you held me on your own
Only later to wake
You reaching out to hold my hand
Things have been so low
We cannot see the glow on the ocean floor
We are starting to rise
Starting to float up
To see the glow of the sun once more
Waiting to go higher and higher
To see the sun’s rays shining through the waves
To light us up and bring happiness and joy
Hoping not to sink
To go lower again
So we cannot see the sun’s rays again
----
EDS Awareness by Shannon
Why am I still here?
Why am I still alive?
Why did I survive my seizures without losing my mind?
Why do I suffer each and every day?
Will the pain ever go away?
What is my job from the big mighty God?
Is my job to teach people to stay positive?
To never give up no matter how bad?
To push for answers when you’re turned away no matter your age?
I keep trying to reach out, to find somebody to help.
To help me spread the word about EDS and raise funding.
We need help
We need testing
We need a pill
A cure would be far fetched
How could one fix a gene that did not develop correctly?
All of the genes in one’s body to make it whole
How to find out the one that is upside down, half missing, or twisted wrong
How to even find a pill to help the pain and agony we suffer every day
In turn the suffering makes us mentally stronger and more determined than ever
No help
No answer
No cure
Told you are faking and you’re not in that much pain
Nobody wants to believe you and think you’re insane
When you finally find one to believe
Told we cannot help you and there is nothing we can do
Yet if we were rich we could do Botox, Acupuncture, and Watsu
These are out there and all that could help
Insurance does not cover these as they are not proven to help
And how could there be without funding to do testing and research
All we can do is keep on truckin’
And that our dream one day of help will come
If not for me, for the next generation
I personally plan on donating my body so they can study
Cut me apart bit by bit
Look very close under a microscope
Run all sorts of testing on my blood and tissue
To one day help another not to suffer
When it is my time to go through the golden gates
I will know in passing my body will help open a new world of discovery
It may not bring answers, a pill, or a cure
But it will give them the rare opportunity to learn and grow
To one day say ahh ha
Here is the key to unlock this door
To give people with EDS more a life of freedom and joy
Don’t take life for granted
Enjoy each and every day
In the blink of an eye it can all go away
And when it does, find a new way to live
To make most of what you have, no matter what
Stay strong
Stay positive
Remember to laugh
Enjoy life
And teach
Make more people aware
Spread the word of EDS
Shout it to the world
EDS is rare and no fun to have
Please pray
Give blessings
That one day help will be found
And joy can be spread around
----
My Thoughts by Shannon
(Newtown)
I’m sitting here thinking why
Does not matter so close to Christmas
It just should not happen
So many youngsters with life cut short
Not being able to enjoy the next day
The parents looking at the gifts wrapped under the tree
Sobbing and saying why me and my family
What to do with the gifts that are here
How am I going to bring myself to take the gifts from under the tree
What to do with them when they are removed
Keep them wrapped up
Open and donate them
Or keep them as can be
So many young angels looking down
Trying to bring comfort all around
Good and bad happens for a reason
Like it or understand it, there is meaning and a lesson
Pray for those who made it and have a terrible image
No matter where they go
They're here about their friends
Try not to look at the sorrow that it brings
Don’t keep asking why
Don’t surround yourself in sorrow
Take this tragedy and focus on tomorrow
How to make it better
How to make schools safer
From now on to follow
Bad things happen as tragic as can be
Take all that tragic energy and put it to good use
Make every system better and safer for all
Does not matter the headache in the long run
Or how it slows you down
In the long run it will be best all around
Go to bed with a new look on life
Hold those you love a little closer and tighter tonight
Never leave without I love you even if you’re mad
You don’t want to regret what you should have said
Be close for your family and friends
Yet give them space
They will reach out when they need you
Even if it is just a smiling face
Then angels that are looking down don’t want to see sadness and despair
They want to see togetherness and all the love
To fix this tragic way
So it does not happen another day
----
Angels by Shannon
There are earth angels and angels that come from heaven.
The angels that are on earth are near, though you may not realize it. They maybe family, friends, a pet, or a wild animal that you see all of the time.
Earth angels are here to lift stress off of your shoulders, whether or not you can touch them. Some people have multiple earth angels. The ones that you can talk to will be there when you need a listening ear or someone to embrace. A pet will listen without judgment.
Angels that come from heaven are around you, especially when you need them the most. Go ahead and talk to them.
If you open your heart and mind when you're down, you can feel warmth and love wrapped around you.
My wild angels are eagles. When I'm out and about I see them. If I'm not out Mike will see them and come home and tell me. Then I feel my stress lifted off of my shoulders.
----
My Wheels by Shannon
I’m happy as can be to have my wheel chair.
Waiting so excited to get a ramp and a van with lift, like a kid staying awake on Christmas Eve to catch a glimpse of Old St. Nick.
Even if at first we only get a ramp so I can wheel around the hood, taking picture, happy as can be.
Knowing one day a van will come and I can soar further and have more fun.
To be able to go out and be free like a bird leaving the nest for the first time spreading its wings.
Looking forward to be able to snap nature pictures. Hoping the wildlife will not be afraid of my chair and still see my aura.
My body is my body and there is nothing I can do to change it.
Having Wheels and a van will take me places that I miss so much or to allow me able to do things I’ve been wanting to, but my legs holding me back.
Legs for most are meant to let you run free, to feel the breeze, smell the fresh air.
These legs are in cement and I struggle to move them, struggle to do simple things as sitting in a sitting position.
My wheels will be my legs as using my crutches is limited. To feel the breeze, smell the outside air and be in my world of taking pictures, letting all the stress go with each push of the camera button.
As excited as I am to get out and spread my wings. I know my feathers have to come before I can take flight and enjoy my new way of life.
Ups and Downs by Shannon
Yesterday went very well
I was sad to see you go
You went to go shoppin’
Then I found my heart a-hoppin’
Missing you
Wishing you were home
Sitting by my side having so much fun doing puzzles
Twas time for bed
Later to find you holding my arm
It’s been so long
Way too long
Since you held me on your own
Only later to wake
You reaching out to hold my hand
Things have been so low
We cannot see the glow on the ocean floor
We are starting to rise
Starting to float up
To see the glow of the sun once more
Waiting to go higher and higher
To see the sun’s rays shining through the waves
To light us up and bring happiness and joy
Hoping not to sink
To go lower again
So we cannot see the sun’s rays again
----
EDS Awareness by Shannon
Why am I still here?
Why am I still alive?
Why did I survive my seizures without losing my mind?
Why do I suffer each and every day?
Will the pain ever go away?
What is my job from the big mighty God?
Is my job to teach people to stay positive?
To never give up no matter how bad?
To push for answers when you’re turned away no matter your age?
I keep trying to reach out, to find somebody to help.
To help me spread the word about EDS and raise funding.
We need help
We need testing
We need a pill
A cure would be far fetched
How could one fix a gene that did not develop correctly?
All of the genes in one’s body to make it whole
How to find out the one that is upside down, half missing, or twisted wrong
How to even find a pill to help the pain and agony we suffer every day
In turn the suffering makes us mentally stronger and more determined than ever
No help
No answer
No cure
Told you are faking and you’re not in that much pain
Nobody wants to believe you and think you’re insane
When you finally find one to believe
Told we cannot help you and there is nothing we can do
Yet if we were rich we could do Botox, Acupuncture, and Watsu
These are out there and all that could help
Insurance does not cover these as they are not proven to help
And how could there be without funding to do testing and research
All we can do is keep on truckin’
And that our dream one day of help will come
If not for me, for the next generation
I personally plan on donating my body so they can study
Cut me apart bit by bit
Look very close under a microscope
Run all sorts of testing on my blood and tissue
To one day help another not to suffer
When it is my time to go through the golden gates
I will know in passing my body will help open a new world of discovery
It may not bring answers, a pill, or a cure
But it will give them the rare opportunity to learn and grow
To one day say ahh ha
Here is the key to unlock this door
To give people with EDS more a life of freedom and joy
Don’t take life for granted
Enjoy each and every day
In the blink of an eye it can all go away
And when it does, find a new way to live
To make most of what you have, no matter what
Stay strong
Stay positive
Remember to laugh
Enjoy life
And teach
Make more people aware
Spread the word of EDS
Shout it to the world
EDS is rare and no fun to have
Please pray
Give blessings
That one day help will be found
And joy can be spread around
----
My Thoughts by Shannon
(Newtown)
I’m sitting here thinking why
Does not matter so close to Christmas
It just should not happen
So many youngsters with life cut short
Not being able to enjoy the next day
The parents looking at the gifts wrapped under the tree
Sobbing and saying why me and my family
What to do with the gifts that are here
How am I going to bring myself to take the gifts from under the tree
What to do with them when they are removed
Keep them wrapped up
Open and donate them
Or keep them as can be
So many young angels looking down
Trying to bring comfort all around
Good and bad happens for a reason
Like it or understand it, there is meaning and a lesson
Pray for those who made it and have a terrible image
No matter where they go
They're here about their friends
Try not to look at the sorrow that it brings
Don’t keep asking why
Don’t surround yourself in sorrow
Take this tragedy and focus on tomorrow
How to make it better
How to make schools safer
From now on to follow
Bad things happen as tragic as can be
Take all that tragic energy and put it to good use
Make every system better and safer for all
Does not matter the headache in the long run
Or how it slows you down
In the long run it will be best all around
Go to bed with a new look on life
Hold those you love a little closer and tighter tonight
Never leave without I love you even if you’re mad
You don’t want to regret what you should have said
Be close for your family and friends
Yet give them space
They will reach out when they need you
Even if it is just a smiling face
Then angels that are looking down don’t want to see sadness and despair
They want to see togetherness and all the love
To fix this tragic way
So it does not happen another day
----
Angels by Shannon
There are earth angels and angels that come from heaven.
The angels that are on earth are near, though you may not realize it. They maybe family, friends, a pet, or a wild animal that you see all of the time.
Earth angels are here to lift stress off of your shoulders, whether or not you can touch them. Some people have multiple earth angels. The ones that you can talk to will be there when you need a listening ear or someone to embrace. A pet will listen without judgment.
Angels that come from heaven are around you, especially when you need them the most. Go ahead and talk to them.
If you open your heart and mind when you're down, you can feel warmth and love wrapped around you.
My wild angels are eagles. When I'm out and about I see them. If I'm not out Mike will see them and come home and tell me. Then I feel my stress lifted off of my shoulders.
----
My Wheels by Shannon
I’m happy as can be to have my wheel chair.
Waiting so excited to get a ramp and a van with lift, like a kid staying awake on Christmas Eve to catch a glimpse of Old St. Nick.
Even if at first we only get a ramp so I can wheel around the hood, taking picture, happy as can be.
Knowing one day a van will come and I can soar further and have more fun.
To be able to go out and be free like a bird leaving the nest for the first time spreading its wings.
Looking forward to be able to snap nature pictures. Hoping the wildlife will not be afraid of my chair and still see my aura.
My body is my body and there is nothing I can do to change it.
Having Wheels and a van will take me places that I miss so much or to allow me able to do things I’ve been wanting to, but my legs holding me back.
Legs for most are meant to let you run free, to feel the breeze, smell the fresh air.
These legs are in cement and I struggle to move them, struggle to do simple things as sitting in a sitting position.
My wheels will be my legs as using my crutches is limited. To feel the breeze, smell the outside air and be in my world of taking pictures, letting all the stress go with each push of the camera button.
As excited as I am to get out and spread my wings. I know my feathers have to come before I can take flight and enjoy my new way of life.
-----------------------------------------------------------------------------------------
Poetry by Shamps 14
I bet if you ask me what is wrong
I would say that my list would be much too long…
My entire body hurts
My energy runs in spurts
I barely sleep
I spend many nights counting sheep
As my health begins to unravel
I even find it difficult to travel
I need to be where there is little light
Most days I have a very small appetite
I have a headache
I can’t stand any of this, for goodness sake
My pulse is beating in my head
Many days I spend alone in bed
Some days I am simply depressed
Some days I can’t even get dressed
Some days I feel so old
Some days I feel very cold
There are some days when I can’t do all that much
There are some days when I don’t even want your touch
----
Yet Another Doctor’s Appointment--A Chronic Mono Patient’s Lament
I recently heard my doctor say…
“You cannot go out today…”
“May I go out tomorrow?”
“You know that would not be good for you or your Mono!”
“Then, what about next week?”
“We will figure that out, next time we speak!"
“One thing that will help you feel your best
Is if and/or when you are tired, you give in and rest."
"While you stand there and check my blood pressure,
What do you recommend as a mood refresher?
"May I please ask the next time you check my glands,
'Please make sure you have warmed up your hands'?
"I should warn, you I do not feel fine
Once my temperature goes above 99."
I cannot decide if I am hot or cold
But this illness makes me feel so very old.
I may be a bit lethargic and sometimes listless;
I really cannot stand any more of this.
I hate staying cooped up and feeling trapped
Even when most of my energy has been zapped.
I want to go out and see the sun
Or do something else that might be fun.
There are not too many places for me to hide
When I am always stuck inside.
I wish I could take a magic pill
And wake up the next day feeling not so ill.
I am looking forward for a healthier day to come
So I will no longer be sitting here, feeling glum!
----
Ouch by Shamps 14
Pain, pain, go away
Will you just leave me alone today?
I am so tired of taking so much pain medication
They don’t do a damn thing but give me constipation
Please try some Tramadol
Why? So I can barely walk and stagger down the hall?
How about some Morphine?
Why? So I can be short-tempered and mean?
I have pain over here and over there
I am beginning to think it is everywhere
If I sit or lay down wrong
The pain lingers on for oh so long
If this pain were just in my neck
I would not be such a nervous wreck
But it goes up and down my spine
And that is where it hurts, most of the time
Maybe if I could just stay in bed
I would not have all these scary thoughts running through my head
There are times when I should be sleeping
But instead, I find myself in bed, weeping
I am so sorry for my venting
But this pain is sometimes so unrelenting
This pain has turned me into such a grouch
When it is so bad, I wish I could only yell “…ouch!!”
Yet Another Doctor’s Appointment--A Chronic Mono Patient’s Lament
I recently heard my doctor say…
“You cannot go out today…”
“May I go out tomorrow?”
“You know that would not be good for you or your Mono!”
“Then, what about next week?”
“We will figure that out, next time we speak!"
“One thing that will help you feel your best
Is if and/or when you are tired, you give in and rest."
"While you stand there and check my blood pressure,
What do you recommend as a mood refresher?
"May I please ask the next time you check my glands,
'Please make sure you have warmed up your hands'?
"I should warn, you I do not feel fine
Once my temperature goes above 99."
I cannot decide if I am hot or cold
But this illness makes me feel so very old.
I may be a bit lethargic and sometimes listless;
I really cannot stand any more of this.
I hate staying cooped up and feeling trapped
Even when most of my energy has been zapped.
I want to go out and see the sun
Or do something else that might be fun.
There are not too many places for me to hide
When I am always stuck inside.
I wish I could take a magic pill
And wake up the next day feeling not so ill.
I am looking forward for a healthier day to come
So I will no longer be sitting here, feeling glum!
----
Ouch by Shamps 14
Pain, pain, go away
Will you just leave me alone today?
I am so tired of taking so much pain medication
They don’t do a damn thing but give me constipation
Please try some Tramadol
Why? So I can barely walk and stagger down the hall?
How about some Morphine?
Why? So I can be short-tempered and mean?
I have pain over here and over there
I am beginning to think it is everywhere
If I sit or lay down wrong
The pain lingers on for oh so long
If this pain were just in my neck
I would not be such a nervous wreck
But it goes up and down my spine
And that is where it hurts, most of the time
Maybe if I could just stay in bed
I would not have all these scary thoughts running through my head
There are times when I should be sleeping
But instead, I find myself in bed, weeping
I am so sorry for my venting
But this pain is sometimes so unrelenting
This pain has turned me into such a grouch
When it is so bad, I wish I could only yell “…ouch!!”
