I don't want to be different.
Please don't turn away.
Cause maybe the pain is worth it,
maybe the warmth makes it okay.
I'm certainly aware of pain.
I know my body well.
Don't tell me to treat it better,
I'm not stupid I can always tell,
I can see when i'm flagging,
when my strength is fading fast.
Dreams and schemes are put to rest
cause the hope and endurance won't last.
If you need my help, need a hand,
don't turn to others, please understand,
I need to serve, Need to be needed
God won't let me be helpless.
won't let me lay down defeated.
I'm a soldier and I'll fight this fight.
I'll keep on walking
through the long long night.
Will you walk with me as equals?
Walk hand in hand?
I'm asking you darling,
Can you please understand?
Give me a hug, tell me what you need.
When you treat me like I'm still whole
you become a friend indeed.
Monday, July 18, 2011
Prisoner of Fate
The fire makes it hard to sleep,
dreams of screams and rivers deep.
Wake up to the milky darkness
cruel genetics, sometimes heartless,
Hiding the pain from family and friends
wishing that someday the horror would end
Knowing it won't, it will only get harder,
harder to cope, most wouldn't bother.
So I'll change my life and hope it works
cause the only alternative does nothing but hurt
dreams of screams and rivers deep.
Wake up to the milky darkness
cruel genetics, sometimes heartless,
Hiding the pain from family and friends
wishing that someday the horror would end
Knowing it won't, it will only get harder,
harder to cope, most wouldn't bother.
So I'll change my life and hope it works
cause the only alternative does nothing but hurt
Don't Dare Tell Me
You say I look fine. And I'm not mad.
There's nothing there to see.
Just pain etched into my face,
from which I'm never free.
I say I'm tired, you say sleep more,
but after nights of tossing and turning,
I don't feel rested, I feel sore.
I say that the pain is the worse I've ever felt.
You ask why I'm not screaming.
And why isn't there a a welt?
Well perhaps then I am dreaming.
X-rays, bloodwork, tests from A-Z
I wonder if this is my fault. I wonder is it just me?
But no there's more, there's people out there.
They toss and turn, and they feel the pain.
They know I speak the truth
cause really there's just nothing there to gain.
Why would I want to lose so much sleep?
Why would I want to cry?
Why would I want to just sit at home?
Why would I want to die?
Why would I want to never eat?
Why would I want to push people away?
Why would I want to take anything,
just to make the pain stop for one day?
So don’t tell me that there's nothing.
Because there's something wrong.
Stop accusing that i'm abusing,
as you have been oh so long.
I'm sick, I don't know why.
I don't want to hurt anymore
So either help and just shut up
or I'll be showing you my door.
There's nothing there to see.
Just pain etched into my face,
from which I'm never free.
I say I'm tired, you say sleep more,
but after nights of tossing and turning,
I don't feel rested, I feel sore.
I say that the pain is the worse I've ever felt.
You ask why I'm not screaming.
And why isn't there a a welt?
Well perhaps then I am dreaming.
X-rays, bloodwork, tests from A-Z
I wonder if this is my fault. I wonder is it just me?
But no there's more, there's people out there.
They toss and turn, and they feel the pain.
They know I speak the truth
cause really there's just nothing there to gain.
Why would I want to lose so much sleep?
Why would I want to cry?
Why would I want to just sit at home?
Why would I want to die?
Why would I want to never eat?
Why would I want to push people away?
Why would I want to take anything,
just to make the pain stop for one day?
So don’t tell me that there's nothing.
Because there's something wrong.
Stop accusing that i'm abusing,
as you have been oh so long.
I'm sick, I don't know why.
I don't want to hurt anymore
So either help and just shut up
or I'll be showing you my door.
Let's Pretend
Can't you see past the smile? I know it doesn't reach my eyes.
They reflect a little pain. And they're mirrors to the lies.
Oh yeah I'm great. Doing swell. Might run a marathon today.
And we'll bake a dozen cookies and then all sit around and play!
I can't live like that, never could. But I'll try for you.
And I know the truth hurts you. And so I'll lie for you.
It's a war and I'm not winning. The waters are rising
but I'm not swimming anymore.
Oh darling I'd pretend for years.
I'd swallow all the tears that drown my soul.
Will it help? Is there air to breathe there with you?
Cause I can't hold my breath for long.
And I fear it will be long gone quite soon.
You're an underwater tunnel. I can hear you calling out my name.
Can't you see it kills me babe, I'm too tired to play this game.
Oh I want it, want the classic fairytale
White knight, white fence, and a healing holy grail.
But it's not there. And I don't dare to drop the gate.
Could we let the walls fall down?
Would the flood raise me up or will i drown?
I think it's time to take a chance, at this second glance,
just look at what there is to gain. And if it brings just one real smile
it might be worth this pain for a little while.
Might be worth playing pretend,
Cause then maybe then there'll be a happy ending here for me.
They reflect a little pain. And they're mirrors to the lies.
Oh yeah I'm great. Doing swell. Might run a marathon today.
And we'll bake a dozen cookies and then all sit around and play!
I can't live like that, never could. But I'll try for you.
And I know the truth hurts you. And so I'll lie for you.
It's a war and I'm not winning. The waters are rising
but I'm not swimming anymore.
Oh darling I'd pretend for years.
I'd swallow all the tears that drown my soul.
Will it help? Is there air to breathe there with you?
Cause I can't hold my breath for long.
And I fear it will be long gone quite soon.
You're an underwater tunnel. I can hear you calling out my name.
Can't you see it kills me babe, I'm too tired to play this game.
Oh I want it, want the classic fairytale
White knight, white fence, and a healing holy grail.
But it's not there. And I don't dare to drop the gate.
Could we let the walls fall down?
Would the flood raise me up or will i drown?
I think it's time to take a chance, at this second glance,
just look at what there is to gain. And if it brings just one real smile
it might be worth this pain for a little while.
Might be worth playing pretend,
Cause then maybe then there'll be a happy ending here for me.
Monday, July 11, 2011
Persistent pain
You can never truly appreciate your health until it's gone. I had a good day today, and by good I mean that the pain only made me tear up a few times. I wonder if I'm being cursed, punished somehow for my sins, but I cannot seem to figure out what terrible thing i have done to deserve this.
You most likely think that I'm being melodramatic, I'm not. I wake up and it's a fight just to convince myself to get out of bed. Another fight to force myself to eat because lord knows the nausea from the pain and depression has killed my appetite. I go to work or school and I look worn out, haggard, and I can't even summon enough energy to be upset. I looked in the mirror today and saw a ghost. My face has thinned out so much and the shadows under my eyes make me appear fragile and sickly.... The fight to go to work and keep working it terrible. I pray constantly please lord let me last this next hour, this next minute, this next moment. It's terrible.
Over all tonight is just bad. I should call someone and talk to them because lord knows I should not be alone right now, I'm not suicidal or anything I'm just in uv a slump that I don't move, or talk or do anything. Typing right now id terribly painful but i keep at it because I need to share, to tell others that they aren't alone. With hope tomorrow will be better, with hope the pain will go below a dull roar and my heart wont feel so stressed and heavy. I do not know what i would do without god .... I hsve no idea.
You most likely think that I'm being melodramatic, I'm not. I wake up and it's a fight just to convince myself to get out of bed. Another fight to force myself to eat because lord knows the nausea from the pain and depression has killed my appetite. I go to work or school and I look worn out, haggard, and I can't even summon enough energy to be upset. I looked in the mirror today and saw a ghost. My face has thinned out so much and the shadows under my eyes make me appear fragile and sickly.... The fight to go to work and keep working it terrible. I pray constantly please lord let me last this next hour, this next minute, this next moment. It's terrible.
Over all tonight is just bad. I should call someone and talk to them because lord knows I should not be alone right now, I'm not suicidal or anything I'm just in uv a slump that I don't move, or talk or do anything. Typing right now id terribly painful but i keep at it because I need to share, to tell others that they aren't alone. With hope tomorrow will be better, with hope the pain will go below a dull roar and my heart wont feel so stressed and heavy. I do not know what i would do without god .... I hsve no idea.
Thursday, June 30, 2011
Page 1 of a Great Article, read on!
http://www.practicalpainmanagement.com/pain/myofascial/fibromyalgia/physical-medicine-rehabilitation-fibromyalgia
Physical Medicine and Rehabilitation for Fibromyalgia
Optimal rehabilitation outcomes in a fibromyalgia patient require that the treatment be tailored to the individual patient’s symptoms, examination findings and subject to periodic testing to allow for adjustment.
Page 1 of 4
Fibromyalgia is not only a difficult illness for patients who are forced to live with chronic pain and other co-morbid conditions, it is also perplexing to physicians who often do not have the tools necessary to feel comfortable in making an accurate diagnosis or to prescribe a successful treatment regimen. In his discussion of the pathophysiology of fibromyalgia, medications, and rehabilitation strategies, Dr. Stoney highlights the usefulness of the Fibromyalgia Oswestry Pain Questionnaire as a tool to measure pain management efficacy in this patient population.
“The days of affliction have taken hold of me. My bones are pierced in the night and my sinews take no rest." —Job 30:16-17Physical medicine and rehabilitation (PM&R), also known as physiatry, is a branch of medicine that aims to enhance and restore functional ability and quality of life to those with physical impairments or disabilities. Physical medicine and rehabilitation involves the management of disorders that alter the function and performance of the patient. Emphasis is placed on the optimization of function through the combined use of medications, physical modalities, physical training with therapeutic exercise, movement and activities modification, adaptive equipments and assistive device, orthotics (braces), prosthesis, and experiential training approaches. The major concern of the field is the ability of the person to function optimally within the limitations placed upon them by a disease process for which there is no known cure. The emphasis is not on the full restoration to the pre-morbid level of function, but rather the optimization of the quality of life for those who may not be able to achieve full restoration. A team approach to chronic conditions is emphasized to coordinate care of the patients.
Pathophysiology of Fibromyalgia
Fibromyalgia has been acknowledged as a disease state by the AMA, the NIH, Social Security Administration, and the American College of Rheumatology. There is a wealth of biochemical data that both substantiates this disorder and helps providers understand its pathophysiology.The patient with fibromyalgia has demonstrated gray matter loss, with one year of fibromyalgia pain equivalent to nine years of brain aging.1 Fibromyalgia is a chronic pain disorder affecting 2-4% of the population.2 Biological and neuroimaging studies support the hypothesis that aberrant pain processing in the central nervous system (CNS) of fibromyalgia patients may represent an important underlying defect.3
A CNS mechanism may explain generalized heightened pain sensitivity of FM patients; increased levels of excitatory neurotransmitters (glutamate, substance P); may contribute to neuronal hyperactivity and central sensitization; and decreased activity of inhibitory signaling mediated through noradrenergic and serotonergic descending pathways. Biologic and genetic influences, environmental triggers, and abnormalities in neuroendocrine and autonomic nervous systems also contribute to the pathophysiology of FM (see Figure 1).
Neuroendocrine4 and neurotransmitter abnormalities, autonomic dysfunction, shared biological and genetic factors,5 psychiatric/ psychological6 and social distress are present in patients with fibromyalgia. The peripheral mechanism is also impaired in patients with fibromyalgia as these patients have hypersensitivity or widespread pain.
The biochemical changes seen in the CNS—the low levels of serotonin, the four-fold increase in nerve growth factor, and the elevated levels of substance P—all lead to a whole-body hypersensitivity to pain and suggest that fibromyalgia may be a condition of central sensitization or of abnormal central processing of nociceptive pain input.7 Evidence has suggested that suppression of the normal activity of dopamine-releasing neurons in the limbic system is the primary pathology in fibromyalgia. Increasing evidence indicates that fibromyalgia may represent a dysregulation of dopaminergic neurotransmission. Researchers have found low levels of adenosine triphosphate (ATP) in red blood cells of patients with fibromyalgia but the most widely acknowledged biochemical abnormality associated with fibromyalgia is abnormally low serotonin levels which have been correlated with painful symptoms. Many studies have linked serotonin, a neurotransmitter, to sleep, pain perception, headaches, and mood disorders.
Serotonin levels in the CNS are thought to be low due to low levels of tryptophan (amino acid precursor to serotonin) and 5-hydroxyindole acetic acid (metabolic by-product) in the spinal fluid. Investigators have proposed a link between low serotonin levels and symptoms of fibromyalgia.8 Moreover, many propose that low serotonin levels may cause fibromyalgia in whole or in part.
Investigators have studied the neuroendocrine aspects of fibromyalgia and have found dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis.9 The HPA axis is a critical component of the stress-adaptation response. In a normally functioning system, corticotropin-releasing hormone (CRH) stimulates the anterior pituitary to release adrenocorticotropic hormone (ACTH). ACTH then stimulates the adrenal cortex to produce glucocorticoids, which are powerful mediators of the stress-adaptation response.
In support of the idea of a systemic biochemical abnormality in fibromyalgia, investigators from four independent studies reported levels of substance P that were two to three times higher than normal.10
Substance P, the neuropeptide in spinal fluid, is a neurotransmitter that is released when axons are stimulated. Increased levels of substance P increase the sensitivity of nerves to pain or heighten awareness of pain. The elevated levels in the spinal cord of fibromyalgia patients cause fairly normal stimuli to result in exaggerated nociception. This results in an impairment in the normal regulation of muscle tone within the spinal cord, contributing to increased muscle tone and focal muscle spasm (see Figure 2).
Medication Meltdown
I recently was told to double my pain medication. When I did it took about a week to adjust for the most part, it's been upwards for three weeks now and they still turn me into a jittery stoner at times.
I ended up snapping at a few people over the course of the last few weeks at my job. For the most part everyone realized I was having a hard time and accepted my apology. Except for one person, because it was their birthday. I was so incredibly out of it I barely remember the whole day and at the time I'm sure I didn't realize it was the person's birthday. Mainly because the person makes me want to scream. I apologized and told them I was sorry although I had to bite my tongue and not make excuses. They accepted for the most part and told me not to worry about it.
Another person berated me over making fun of this person. They had screwed up like seven orders in a row and me and another guy from work were teasing him about maybe throwing him out the window..... yes I realize that's mean. Like I said I was really out of it so I'm not exactly sure of my reasoning. I just can't function without the medication and it's not like I can call out of work for a month every time I have a medication change. As it was I was filling in for someone who was sick. I get weird on the medications and I hate huritn gpeople but my verbal filter just isn't there when I take my meds. It's gone. If I could work without them I would. With them I can work and contribute to society, I'd like to continue that way. I'm trying to tame my tongue. The only thing I"m taming is how much i take my meds though. I feel so guilty for taking them, I know i'm going to probably say something mean or insensitive when I'm on them and yet it's so damn hard to get through the day at home without them never mind work a full shift without them.
I just don't get why are people so hard on those who are on medications? I was told that I can't use it as an excuse. Okay then, next time my hip acts up and I can't walk I won't use my cane as an excuse not to mow the yard, or walk up five flights of stairs at school, or walk three blocks to a friend's house to babysit their kids. Don't be ignorant. These people aren't stupid, or mean or cruel they just do not understand. And I've tried to explain it but they don't want to hear my side.
I don't often use being sick as an excuse for rude behavior. However I am still rude quite a bit of the time, I even admitted that without the meds I'd still have been cranky with the guy, just not as much. And yet still resentment. Why? I don't get this???? I'm not okay! It's like blaming someone with manic depression for not acting normal when they aren't on medication. Or someone with cancer for not eating everythign on their plate when they are a guest at someone's house because they are too nauseous. Sometimes I really wish everyone could live one day in pain.
The person who took me to task did so as nicely as possible, I'm not angry with them, I'm glad that they are sticking up for the guy. Someone has to. The person even said that they gave me credit for coming to work and dealing with all the shit their when I didn't feel well. But I don't think many people really understand how NOT well I am.
I don't look haggard because I'm ugly. I look haggard because I have chronic fatigue. I'm always tired. Doesn't matter how much I sleep. I am ALWAYS in pain. People don't get that. It's ALL the time. Not wow something kinda hurts. it's ALLLLLLLLLL the time. I am in moderate pain 90% of the time. MODERATE. Someone said the other day that being mildly in pain all the time must get tiring. Really? Cause I'm an inch or so from crying some days. Some times I cry when I go to sleep or when I get up because it hurts so badly. I don't want to go to work in the morning. I just want to lay here and cry some, and then wait till they find a cure. I'm trying to trust God to help me get through it. He's doing well. It's just hard... a lot of the time. Maybe it's what's keeping me so close to him. If so then I'm glad. I need to sleep.....
I ended up snapping at a few people over the course of the last few weeks at my job. For the most part everyone realized I was having a hard time and accepted my apology. Except for one person, because it was their birthday. I was so incredibly out of it I barely remember the whole day and at the time I'm sure I didn't realize it was the person's birthday. Mainly because the person makes me want to scream. I apologized and told them I was sorry although I had to bite my tongue and not make excuses. They accepted for the most part and told me not to worry about it.
Another person berated me over making fun of this person. They had screwed up like seven orders in a row and me and another guy from work were teasing him about maybe throwing him out the window..... yes I realize that's mean. Like I said I was really out of it so I'm not exactly sure of my reasoning. I just can't function without the medication and it's not like I can call out of work for a month every time I have a medication change. As it was I was filling in for someone who was sick. I get weird on the medications and I hate huritn gpeople but my verbal filter just isn't there when I take my meds. It's gone. If I could work without them I would. With them I can work and contribute to society, I'd like to continue that way. I'm trying to tame my tongue. The only thing I"m taming is how much i take my meds though. I feel so guilty for taking them, I know i'm going to probably say something mean or insensitive when I'm on them and yet it's so damn hard to get through the day at home without them never mind work a full shift without them.
I just don't get why are people so hard on those who are on medications? I was told that I can't use it as an excuse. Okay then, next time my hip acts up and I can't walk I won't use my cane as an excuse not to mow the yard, or walk up five flights of stairs at school, or walk three blocks to a friend's house to babysit their kids. Don't be ignorant. These people aren't stupid, or mean or cruel they just do not understand. And I've tried to explain it but they don't want to hear my side.
I don't often use being sick as an excuse for rude behavior. However I am still rude quite a bit of the time, I even admitted that without the meds I'd still have been cranky with the guy, just not as much. And yet still resentment. Why? I don't get this???? I'm not okay! It's like blaming someone with manic depression for not acting normal when they aren't on medication. Or someone with cancer for not eating everythign on their plate when they are a guest at someone's house because they are too nauseous. Sometimes I really wish everyone could live one day in pain.
The person who took me to task did so as nicely as possible, I'm not angry with them, I'm glad that they are sticking up for the guy. Someone has to. The person even said that they gave me credit for coming to work and dealing with all the shit their when I didn't feel well. But I don't think many people really understand how NOT well I am.
I don't look haggard because I'm ugly. I look haggard because I have chronic fatigue. I'm always tired. Doesn't matter how much I sleep. I am ALWAYS in pain. People don't get that. It's ALL the time. Not wow something kinda hurts. it's ALLLLLLLLLL the time. I am in moderate pain 90% of the time. MODERATE. Someone said the other day that being mildly in pain all the time must get tiring. Really? Cause I'm an inch or so from crying some days. Some times I cry when I go to sleep or when I get up because it hurts so badly. I don't want to go to work in the morning. I just want to lay here and cry some, and then wait till they find a cure. I'm trying to trust God to help me get through it. He's doing well. It's just hard... a lot of the time. Maybe it's what's keeping me so close to him. If so then I'm glad. I need to sleep.....
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