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Going Dim by Cammie LaValle, Part 1

 

Going Dim

Part I of II – By guestwriter Cammie LaValle

(trigger warning)
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Picture of Cammie taken on the same day.

 

Remember that light inside of you that used to shine?  We reminisce about it in our heads; to that person we used to be.  That silent yet screaming conversation in our minds we have on a daily basis.  For some, it’s the majority of the actual conversing we do and sadly, it’s only with ourselves.  We are feeling ourselves; our internal light; the fire that once helped us accomplish so many things in life, be reduced to less than a flame; more like a sad, almost non-existent spark which could barely keep a match lit.

 

Sure, there are flickers of hope and tiny little fires at times; but personally, they are getting few and far between.  I have not given up all hope, but I am struggling to keep the grasp.

 

One of my motto’s is “Let Your Soul Shine” taken from a song.   How hypocritical of me to tell others to do just that when I am watching, feeling and experiencing my own go darker and darker every day.  I don’t mean dark as in evil, although I will admit I’ve had some pretty evil scenarios which I wish would play out in the lives of some of the doctors I have encountered in the last few years.   No, I would not harm anyone; but as you read that, I am certain you can recall one of those thoughts that has played out in your mind so detailed as though you were actually plotting a dismemberment.  I for one thought a log-splitter would suffice.

 

As I am writing this, I have backspaced hundreds of times thinking what I have to say or what I feel is not ready to be heard or will be perceived as seeking pity, over reacting, not being thankful for what I do have or God forbid, the “It could be worse” reaction we often get.  Yes, we all comprehend that, but more often than not, it is far from a supportive statement as we perceive it.  Minimizing our hell is what most of us feel; even though we know most of you mean well when it’s said.  But I realized the words I put down, if were written by someone else and read by me, are exactly the words I would need to hear; and yearn to hear.   So without a hesitant mind, and the pain jolting through my body and hands, I shall spill the complete ugly truth that I am not shining by any means.  I’ve gone dim.   This is not news to some; as they know me too well to believe the crap that spews out of my mouth when I say “I’m fine.”

 

I ask myself daily, how much more can I handle?  Do I even want to for that matter?  Yes, those thoughts are there when in my dimmest hours.  Will I say it out loud?  Probably not.  Will I say it here, when I know others just like me are reading this; yes, yes I will.  I can’t say I am proud of my thoughts, but I can say I am not about to blow sunshine up anyone’s ass; especially knowing the people reading this are struggling right along with me.   That’s not what we need and I may very well do it to others so they don’t have to worry about me, but I will not do it to you.  I know that sounds terrible as I have more than likely never met or ever will meet 99.999 % of you.  Why be truthful to people I don’t know and hide and lie to my own family and friends?  I have no clue the rationale behind this and won’t pretend I do either.  What I do know is that there is a greater chance those reading this, understand it to their core and need no explanation of the words, the thoughts, the expressions, the pain, the isolation, the self-doubt, and the meaning behind “Going Dim”.  I fully understand all humans go through struggles in life and I am not discounting any of that; anyone or any struggle of any kind.  I am addressing our struggle.

I am opening up my broken spirit and soul, my tired mind, and using my pain riddled body, to let YOU know, you are far from alone in this battle.  And I may be writing what you can’t dare to say out loud, but feel it as if it has taken over your entire being.  I know I have read some stories which after the first sentence I felt the lump in my throat.  I certainly am not sharing to cause distress or any tears, but if anyone reading this has that lump, let yourself feel the emotion and release some of that internal pain that is eating you alive and has taken over a portion of your soul.

 

More than likely you have caught on that I have not begun to describe the pain.  If you are reading this, you already know how it will read.  However, for those friends or family that are reading this who have a loved one suffering, I will follow this with a brutal truth that the one you know, who is  suffering, is too damn scared to tell you.  Whether it be pride, or wanting the world to believe we can handle this, or the complete farce we muster up in order to appear stronger than we actually feel.    Your loved one has gone dim.  And you might have as well; attempting to care for them.   Addressing the other side of this is just as important as addressing ourselves.

The ME I once was, is still seen by my husband and some family and friends; however, I don’t see her.  I feel as if she’s gone for good.  I talk with her in my mind and actually pray she will come back, somehow, some way.  She could light up a room (from what I was told).  She was vibrant, funny, witty, intelligent, strong, hard-working, worthy, helpful, selfless, and although some deep down pain existed as we all have and hide; she was happy.   She helped raise 2 children, who she loves.  She was a good wife, a good friend, a reliable sister and had worked since a very young age; worked her ass off.  Now, the relentless quest for her to return has come up empty.  She was me.  I was her.  We’ve both gone dim.

 

Where did she go?  CRPS (full body), Fibromyalgia in addition about a dozen other health issues; some quite severe, has held her captive and the ransom demand at this time cannot be met.  The hope and flicker of light is diminishing.  Sure, I say I am hopeful and staying positive, but who am I kidding?  It’s gradually becoming such a farce, I can barely hold back the tears when I say I am still positive.  It’s a blatant lie.  I feel as if I am getting a very real glimpse of Hell.

 

Ice pick, razor blade, vice, hammer, pins, needles, knife, match, truck, salt, gasoline, fire, electric shock and flames; all of which I feel has been used during this captivity.  A scene from a mysterious attempted murder movie in which we wait in the trunk to be rescued.  Someone on the outside may not comprehend that comparison, but I, along with so many others; truly feel this.  And the trunk is our lives at times.  That dim, cold, dark, isolated place, we don’t willingly go to, but find ourselves there, stuck; more often than not.  The tools used is what we compare our pain to; as CRPS/RSD plays out such a brutal attack on our bodies daily.  As we wait for the ransom, which in our lives is a doctor, a treatment, a cure, we succumb to this attack and 24/7 try to prepare ourselves for the next dreadful blow.  I try to hold it in as to not be a burden; not wanting people to see how bad it is.  There are times it just comes out, screaming, howling, paralyzing pain to the point I can barely breathe.  Arms, legs, feet, back, hips, face, ears, chest pain where it feels like I am having a heart attack, but I know I am not.  Then I think, what if I do have a heart attack?  If I feel like that daily, if I have one, will I even know?  And my hypertension gets so out of control, my neck feels like I am being stabbed, my vision gets blurry, I lose minutes and have lost recollection of hours of time.  I get scared to be alone in my own home.  This scares the sh*t out of me!  On nights the blood pressure is too high and the chest pain is severe, I am too damn scared to go to sleep as I honestly wonder if I will wake up.  Yes, that is how my mind works.  I pray I wake up.  I won’t go into the thoughts and prayers that go on, when I honestly question if my life, as I know it, is actually ending that evening.   This is brutally honest and I know it sounds far-fetched to some.  But, many reading this feel the same way or have felt the same way.  I am saying it now, to give you some peace of mind that you are far from alone.   It is not by any means a healthy way of thinking, but it is where one’s mind tends to go at times.  I am not proud of these thoughts, but they are true.

 

Pain changes people.  It’s relentless.  The beast wins in those moments and all I can do is wait for it to let go of its ever so tight grip of my body.  I think to myself during these times, how the hell am I to live this way?  How is my husband to live this way, with his wife being consumed by pain, lost herself and her feeling of self-worth?  I am not the woman he married.  Far, far from it.  He is my biggest advocate and has not left my side, although I wouldn’t blame him.  His wife is gone.  The anxiety, stress and depression that goes along with this beast leads my mind to wonder “when” he will have had enough; not “if”.  For better or worse, sickness and in health, meant something to him, just as it did and does to me.  How lucky am I to have such a man who took his vows so serious, that as he watches his wife diminish and change into someone he didn’t marry, he continues to assure me we are in this together and he will never leave my side.  He is the only one who can make these demons stop in my head.  He is the only one who has seen it all and still has faith I will come out of it; come back as the woman he married; come back from “Going Dim”.

 

What has brought you to this page, is why many of you will understand what I am about to say next.  You are dim yourself from disease and pain or you are caring for someone and are desperately trying to find a way to understand and help that person; your loved one.   (For those seeking help to care for another – THANK YOU!  Sadly enough, you may be the only one doing so for that lost screaming soul).

 

Too many are left alone and instead of having support in waiting for that ransom, they remain in the trunk; dim, isolated, begging for relief, kicking and screaming to get out; get help and for someone to actually listen.  When there is never a response, those broken souls take it upon themselves to put an end to their private mysterious movie which is their life.   They don’t think they can handle the next blow, they have been disregarded by doctors, family, friends and in their mind; the world.

 

Pain messes with your mind.  Even those who truly have support; at times feel like an overwhelming burden to everyone, isolated and alone (even if the room is filled with 20 people) and misunderstood, they would rather not be on this earth for one more second of pain or one more feeling of being dismissed by a friend or loved one.  That emotional pain alone when one’s suffering is dismissed; as if we are over-reacting to a common cold; could and has triggered people in pain to start planning their demise, as it is too much for them in their broken mind and body to fight anymore.  Death, in their mind, however wrong one deems that thought process; is what they are contemplating.  If you think this is reaching; just read through posts in some of your or your loved one’s support groups.

Daily, I see people tell people they never met, that they “can’t handle it anymore”, “I just want to end it”.  Keep in mind, if you look at their FB page, or Twitter, or recall a recent phone call, most would have just said or posted on how great their day was.  “I am fine.”  It’s a farce, which most of us continue to do; as to not upset our family or friends with our true feelings and pain, or to not be honest with people we actually know because we’ve been dismissed too many times and are broken to the point that some knowingly make a decision to NEVER again speak to a loved one, hug a family member; and even their own children; as their mind has told them it’s easier to die than live.

 

How sad is that?  Are they selfish?  When people take their lives due to pain, any type of pain; they cannot comprehend the ramifications other than they no longer will have pain.  So completely torn down, the thought their child will lose their parent, is not strong enough to stop them.  How in the hell is our society missing this?  How are family and friends missing this?   How are people in pain getting to this point?  Whether it be lack of treatment, lack of cure, lack of support or the mind games played out in your head when your pain takes over your life; it must, meaning right now, start being addressed.  

Are you thinking your life is not worth it anymore?  Well, it is.  You don’t see it, but others do.  And I beg anyone reading this, to reach out to someone. I can almost guarantee these thoughts have gradually entered the minds of your loved one who experiences 24/7 pain; not remembering a day without it.  And if someone asks you, be honest.  I have uttered the words I’m fine for the majority of my life; over half of which has been in chronic pain.  I hid so many things from even my family; out of pride and factors which stem from my childhood, some of my own family do not believe I am in such a state of despair and pain; broken down with a tired soul and body that feels useless.  I hid for too long.  Yes, it’s my fault for putting on the mask.  I was and at times still very good at it.   A habit very hard to break.

It’s natural for me to pretend I am okay; for I’ve done it all my life in one way or another just like most of humanity in some aspect.  However, I am removing it now and so should you.   This does not give us the right to become an un-consolable hot mess of a person; but it does give us power to deal with what is behind the mask; our true selves.  It certainly will not be easy, but how worn out are you right now reading this?   My soul is tired and there is no amount of sleep in which can awaken it.

 

“Live without living?”  What does that mean?  If you ask that question, you have yet to comprehend how our minds work; how we feel & what this has done to us.  Or better said, what it has done with the person we once were.  The reason I; we’ve gone dim.   We strive to live better and we do anything and everything to get there.  Find relief, find a new normal, find peace, find understanding, find faith, find God, find a way; find ourselves.  I am trying and I have resorted to begging at times just to get a doctor to listen to me.   Most ignore it; but I’ve been lucky to find one that listened; one who upheld his oath.   One who has promised to help me find a way, a new normal, and a treatment in which I can maybe, just maybe, have a chance at finding myself again.  I don’t trust many, but trusted him and have for over 10 years.  Due to this trust and mutual respect between a doctor and a patient, I have a chance; a slight flicker of light in my dim world which I am grasping onto so tight, if I were to let go I feel as if I would crumble; again.

 

You see, although I’ve gone dim like many of you reading this, I also found HOPE and it was due to raising some hell and advocating for myself and not shutting up when I was told NO.  I kept going, I kept calling, I kept writing; I kept fighting.  I am still dim, but I have seen the flicker of light; that same light which could let “My Soul Shine”.  I don’t know if it will, but I’ll be damned if I’m not going to try.  I deserve it; as do you.

 

I started writing this 8 months ago.  When I started, I was in my darkest times.  I thought about deleting those parts; but that would be me lying to you, and again, as life has taught me, continue to pretend I am okay when I am not.   So I hope when you started reading, you felt you were no longer alone in the pain, the dark thoughts, the hopelessness, sadness and you knew, in your heart and soul, there are others like you.  And as you read on, you found understanding, a bond with someone you probably will never meet.  A bond due to pain, no one wants, but one everyone needs so they don’t feel alone and don’t ever think tomorrow is not worth waking up to.

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I’m honored to share this project by chronic illness activist, guest writer Cammie LaValle, featured for CRPS/RSD Awareness Month. She’s not only a personal friend I met in the chronic pain community, but she’s a personal inspiration to me as well as so many others. She leads the charge in fighting campaigns for chronic pain and rare disease causes with the tenacity like none I’ve seen before, whilst attacking her disease with the same vigor. I’m proud to be in the same warrior club with a woman like Cammie, as I have learned much from her. Read more RSD/CRPS articles, see art projects, poems, and survival stories here.
Thank you for visiting and sharing -Mary
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If your body is a boombox, and the nervous system is music…

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Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.

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When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!

When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.

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A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly. 

When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.

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The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.

Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.

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Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.

Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.

That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!

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Cure Worship, Illness Gratitude, & Finding the balance between

To be thankful while you are suffering is one thing, but to be thankful for suffering….

Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.

It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.

 

I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.

Again, these are extreme statements, but thought provoking and inspiring nonetheless!

Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.

Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.

When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.

I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes. 

I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.

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More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5

 

I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10

 

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18

 

When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19

Nerves in Nature: Exploration in Photography #1

 

This is an exploration of the human nervous system through nature photography. 

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Smoke Tree Leaf by Joe Petersburger

 

These sprawling, spindly shapes repeat throughout the universe.

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Red Coral, outdoorphotographmag.com

I wondered if it was a coincidence, and if not, what the commonality was…

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Lightning, Smosh.com

Transfer of energy. 

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Tree Branches, Mythology of Blue

Whether inside the body, in the soil, under the sea, or above the heavens, the mirroring shapes are performing similar tasks.

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Plant Roots, Theatlantic.com

And like an artist whose work shares similarities across her pieces, so does the Creator’s design.

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Please do share your insights.

The Dream #SickLivesMatter

Sick lives matter vitals

After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?

How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.

Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.

Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).

HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.

I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?

Your life matters. Your story matters. Your voice matters.

#SickLivesMatter

To share your story or to learn how you can get involved in advocacy online, email abodyofhope@inbox.com

 

Multiple Sensitivities…of the Heart

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Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.

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This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.

When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.

Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.

But today, there was another sensitivity I didn’t expect to encounter…

I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.

It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.

Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.

Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.

“Touch has a memory.”
John Keats

Breathing Through the Pain

This is a coping mechanism I have myself been using daily for almost 9 of my 10 years with chronic pain and CRPS/RSD. I along with so many other pain warriors use relaxation tools to help live with ongoing pain. Please read below how this young fighter with CRPS is learning breathing and relaxation techniques:

[This article was featured on The Biofeedback Daily E-Magazine!]

The Life of a Fluro Zebra

Hi Guys!
I have been lucky enough that the pain clinic in my hometown have paid for me to have one-on-one yoga sessions. The yoga teacher is so amazing and she has traveled all around the world learning and teaching! She knows lots of different techniques from lots of different countries. One of them was an Indian breathing technique that she showed me, it was called Deep Breath Advantages of Deep Breathing Exercises and I find that it does a great job. Whenever I am stressed or I bump my CRPS foot I do it, and it helps calm me down.It slows down my breathing because when I am in a lot of pain I find it hard to control. The pain doesn’t go away when I do it, it just relaxes my muscles and my mind. I think it could really help anyone when they are stressed or hurt.
I found a really interesting website that…

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Pain Pills: Chronic Pain Sufferers Speak

"Pain Pills: Chronic Pain Sufferers Speak" #Pain #Meds #Health #Cancer #Spoonie Art Print by Flat Earth Designs on Etsy. Nathaniel Bibaud. "Pill Rat"

Flat Earth Designs: Etsy

There is a great debate in America regarding prescription pain medication. From someone who hears this issue from fellow chronic pain sufferers regularly, we have a dog in the fight, too.

Those with chronic, non-cancer pain have been criminalized in the last 10 years along with their doctors because of the medications being prescribed…wait, no…flip that, reverse it. In the last 10 years, because of individuals abusing their pain medications, addicts buying opioids on the black market, and doctors over-prescribing irresponsibly, chronic pain patients, and their doctors have been treated like criminals.

Founding a support group for Complex Regional Pain Syndrome: known as the most painful condition one can endure, let me be clear that even people with the worst possible pain do not want to take pain medication. Why not? When they are screaming, crying, homebound and barely holding on, why won’t they take 1 tiny little pill? For one, they are afraid of becoming an addict! They are worried their family will think less of them. They are anxious that if their doctors prescribe it once and it helps, how will they ask for a refill without sounding like the “pill seekers” they hear about on television? Too many times people are nervous about taking their prescribed medication for severe chronic pain because of what they have seen on talk shows and read about on the internet.

Well, here’s something else to read…

A study in 2007 sampled 15,000 veterans with chronic pain (Edlund et al.). They were all given opioids, and only 2% abused his or her medications. I have read other studies like these for chronic and cancer pain in which the addiction or abuse rate is always extremely low. Apparently, people in excruciating pain, 24/7, every single day for years are managing his or her pain medication AS PRESCRIBED. This may shock some of those television personalities.

Why is it that those with chronic pain are much less likely to become addicted? In those without chronic pain, opioids cause a sense of euphoria. For those WITH chronic pain, the medication does not match or overcome the pain. A neuropathic pain study published in 2003 by the New England Journal of Medicine found that opioid pain medication only gave 36% pain reduction at the highest dose possible before side effects of the drug were intolerable. Those with such extreme pain continue to feel pain; therefore, how can there be a medicated euphoria? Maybe this is why there is a much lower rate of addiction in chronic and terminal pain.

Many of those I encounter are so conservative with their medications. They take as little as possible, even when pain is high. When pain is low enough to tolerate, most don’t take any pain medications. No one wants to take any type of medications. Those I encounter do what is available to them to manage pain: treatments, therapies, procedures, etc. Pain medication is seen as a means to an end. A short-term negotiation until there is a better pain relieving strategy. But for many, it is a necessary part of living, coping, and functioning with painful neurological disease.

Doctors who treat chronic pain exclusively are held to increasingly high protocols by the government. There are more changes all the time concerning how they can and cannot care for their ailing patients. With more government restrictions, more paperwork, more required seminars for doctors and nurses… Do you think MORE attention and time is being given to patients, or less? If you are a patient who sees a pain management specialist, you would be expected to sign a patient contract. The doctor has communication with your pharmacist, and you would be expected to furnish monthly urine and/ or blood depending upon which state you live in. Because of the current climate regarding these “controlled substances,” those with painful chronic illnesses like RSD, Peripheral Neuropathy, and Trigeminal Neuralgia who go to a hospital for an emergency may be treated like a criminal until their pain doctors can be contacted. Imagine if you were the one having a medical emergency!

Just a side note, in my research I learned that a doctor’s office can be thought of as a “pill mill” if 50% or more of its patients are treated for pain management, even if they offer physical therapy, biofeedback, counseling, acupuncture, interventional pain therapies, etc. If the doctor is chief at the local hospital, she still runs a “pill mill” up the road because she primarily treats people with chronic pain or cancer pain. Nice, right? CDC Pain Clinic Regulations

Whether you are judging someone else with chronic pain for taking pain medication, or if you are judging yourself because you think it means you are somehow weaker for taking your meds, please ask yourself a couple of questions. If you had another condition… cancer perhaps, would you feel guilty or like you had caved in by starting on the prescribed chemotherapy protocol? If you had diabetes, would you deprive yourself of your insulin, only taking half the dose, when you are on the verge of going into a diabetic coma? Do you feel shameful about the other medications and treatments you are being prescribed currently for pain?

If you are taking your medication as prescribed, then is your concern about becoming addicted, or is it the social stigma you worry about? For those judging, if your sister, son, or elderly grandfather were suddenly touched by crippling degenerative neurological pain, wouldn’t you want them to have the best Quality of Life possible while they explore ALL available treatment options? If every treatment they tried in the next 5 years failed to help, but you knew pain medication would keep them functioning through the pain, would you still want them to suffer the next 5 years without pain medication?

Pain medications can be dangerous, yes! They ABSOLUTELY should be taken with caution, with respect, and with the same seriousness with which you regard your disease. Along with all of the voices yelling about the pain medication issues, people who have chronic pain tend to have quieter voices, but please remember, we are still speaking.

**********

More resources:

DEA Rescheduling Hydrocodone

The Doctor’s Dilemma: opiate analgesics and chronic pain

How Does Chronic Pain Management Work?

art print by Nathaniel Bibaud. Flat Earth Designs on Etsy.

“Pill Rat”

Flat Earth Designs on Etsy. “Pill Rat” art print by Nathaniel Bibaud.

Thank you so much Nathaniel. Go buy something awesome from his shop!

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