Poem for RSD/CRPS “Pain Tokens”

“Pain Tokens” 

RSD: 

It’s not free.

It’s not “regional,”

And it’s not seasonal.

They say it’s like fire, but it’s so much more.

Like pieces of yourself scattered on the floor.

~
RSD: 

It’s not free.

It will cost, and it will take.

People will think your pain is fake.

You’ll feel it in your body;

 You’ll feel it in your soul.

It can start when you’re a kid; 

It can last until you’re old.

~
RSD: 

It’s not free.

Your family will pay.

Some will behave in a different way.

Some try to help; 

Some go away.

Some can’t stay to watch you change.

~
RSD: 

It’s not free.

It moves and grows in ways you cannot know.

You adapt…you can flow.

You can bend,

You can throw caution to the wind!

~
RSD: 

It’s not free.

You pay the toll;

You walk the road.

Share some coins;

You’re not alone.

@abodyofhope, 2014

*********************

Today is Color the World Orange Day! This is an annual international campaign to raise awareness and funds for chronic pain research. Please participate by sharing something orange to social media  (or to your blog) with the hashtag #CRPSORANGEDAY. Thank you!

 https://rsds.org

Inspiration, for a bad day with Chronic Pain

You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
It doesn’t make it any less horrible to know that 100 million Americans with chronic pain can relate to that feeling, but it may help in some way to remember that your feelings are absolutely normal.
Illness, pain, long-suffering literally deprive the brain of the chemicals and hormones required to feel a general sense of happiness and peace. It’s not pain or illness alone that causes depression, but instead the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness.

What might have been a passing thought of fear, thanks to the ongoing imbalance in the body, can become a spiraling pit of despair and feelings of doom. Pain can wriggle into your very soul, and drain you of every resource.

This month is my 13 year anniversary with chronic pain (RSD/CRPS). Then when the condition progressed to stage four with comorbidities 6 years ago, I felt as though I completely disappeared. Illness swallowed me up.

If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and move forward with their lives while you fight for your own in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice.

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

Thank you to The Mighty for choosing my article for publication.

Self Portrait Chronic Pain

“Life on Fire”

These are 2 self portraits expressing the neurological and autoimmune disease RSD, also known as Complex Regional Pain Syndrome.

“Outer Smile”

There are those who wonder why those of us confined by pain and illness choose to continue a life suffering when all has been done, and there is not much more to do than to try to make us as comfortable as possible.

Most will never know as much torture as those who live with chronic neurological disease. But to be miserable, to be a victim in your spirit, that you must fight with every effort. 

It may take all you have and more, but you are indeed needed in this world. Never, never give up.

Dear friend, never lose faith that your life purpose for being on this earth is so much more powerful than your pain. 

I believe in a loving merciful God who lends strength when we get to the end of ours. 

I fight to survive, to choose life every day when my body begs the opposite. I want to encourage you today to take on your battle in your own life.

Hugs gentle warrior. 

Please share below how you continue to press on despite seemingly insurmountable challenges.

Party Etiquette for a Sassy Spoonie/ Missed Manners

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.

Glamorous Woman | Kim Legler

1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”

See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!

2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”

See, you can play this game of witt too. What a wonderful party!

3. Smile
When in doubt, smile.

Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!

So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!

Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.

Merry Christmas, happy holidays!

This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.

“Waking in Winter” quote by Sylvia Plath

Lines by Mitsuhiko Kamada

“Waking In Winter” by Sylvia Plath
I can taste the tin of the sky —- the real tin thing.

Winter dawn is the color of metal,

The trees stiffen into place like burnt nerves.

All night I have dreamed of destruction, annihilations —-

An assembly-line of cut throats, and you and I

Inching off in the gray Chevrolet, drinking the green

Poison of stilled lawns, the little clapboard gravestones,

Noiseless, on rubber wheels, on the way to the sea resort.
How the balconies echoed! How the sun lit up

The skulls, the unbuckled bones facing the view!

Space! Space! The bed linen was giving out entirely.

Cot legs melted in terrible attitudes, and the nurses —-

Each nurse patched her soul to a wound and disappeared.

The deathly guests had not been satisfied

With the rooms, or the smiles, or the beautiful rubber plants,

Or the sea, Hushing their peeled sense like Old Mother Morphia.

Going Dim by Cammie LaValle, Part 1

 

Going Dim

Part I of II – By guestwriter Cammie LaValle

(trigger warning)

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.

******

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

If your body is a boombox, and the nervous system is music…

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.

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.

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.

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.

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!

A Peace Premonition

Just over one year ago, I wrote a post which I now believe may have been a premonition. On one of the last days of 2015 I wrote No Fear Campaign, 2015 and I have thought back to that post as well as revisited it so many times throughout this past year.

I was fueled with courage at the beginning of the year, but I had no idea why I would need it. And then the bottom dropped out of my life and I REQUIRED that courage more than ever. I suffered so much loss this year, I made a huge transition, fought a difficult battle, saw several new doctors, visited the hospital, started physical therapy, home care, and have been exposing myself to many new faces, new experiences, and could never have imagined any of this just one year ago. It’s true that this year, I’ve been in constant crisis management. But it’s also true that I’ve been managing my own crisis. That might seem like a given, but illness doesn’t always allow us that luxury.

Last year, the messages to be courageous seemed to jump out everywhere: Have no fear, do not fear, I am with you, be not afraid. If God wants you to hear a message, you will see it constantly whether it is on Facebook or Twitter or television or out of your home or in your Bible- if you feel like there is something that keeps popping up in front of you repeatedly, that message is JUST FOR YOU! Truth finds you. You can try to ignore it, but if God wants a message in front of you, He will repeat it and confirm it. It’s not a coincidence. And I am so thankful I grasped the message to have courage when I did. It truly saved my life this year and courage continues to change how I move forward.

Things are so hard now, SO HARD. But I’m planning to beat fear once again, and go to my sister’s wedding… in 7 days. This is possibly one of the scariest things I have ever attempted. And yes, I am afraid. As it comes closer, all of those I CAN’T thoughts are terrifying at times.

Courage in the Fire

These posters were made around the end of last year. Around the same time that I wrote No Fear Campaign, I wrote a few other, fearless-themed posts. In one piece, I said: “The strength comes for the step you need it, not days or months ahead.” That is what I am counting on for this wedding adventure. And it helps give me peace that God will strengthen me and my body to do what needs to be done when the time comes, for my sister, and for me.

Whatever trials wait for you tomorrow, and paralyze your heart with worry today, I hope you feel comforted remembering you can call on that added strength and courage at the moment you need it. You aren’t walking your path alone.

~Peace be with you~

“Freedom lies in being bold.”
― Robert Frost

“Sorrow prepares you for Joy,” Rumi quote

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.”

― Rumi

Chronic Pain of the Brain: #ChronicMigraine, If only I Could SCREAM!!

For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.

Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.

But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.

While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.

Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.

When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.

This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.

Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.

If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.

******************************

Migraine.com Statistics:

In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.

Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.

Migraines cost the U.S. more than 31 Billion per year in healthcare

Only $19 million goes into researching migraine disorders

~Find me at @aBodyofHope on Twitter

www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions