Blog Archives

You are an Overcomer- Never forget

I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.

Each morning, you might want to start fresh, and leave the past behind you, right? But please, friend, don’t forget everything you’ve overcome.

Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.

Don’t forget when you ran out of every last molecule of energy you had left to give, and you had no idea how you would keep going another moment longer…. but instead of giving up, you found something else inside of you that carried you forward. Don’t forget that driving force within you.

Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”

Remember when you were ready to forget it all?

How are you still here after everything you’ve been through?

Don’t forget how you made it!

Don’t forget that force inside of you that begins when you’ve reached the end of yourself.

Don’t forget.

Ever.

As seasons change, as life continues to surprise you, carry yourself as the OVERCOMER you are.

******

 

Links to the featured artist: The Last Sparrow (artistic home furnishings on Etsy), Follow Voilet D’Art on Flickr, Twitter 

A Peace Premonition

God has not given us a spirit of fear...2 Timothy 1:7 "No Fear Campaign 2015" article on God's COMMANDING us not to fear and to have courage in our lives. #courage #nofear #Christian #verses #Bible #fear #inspiration #anxiety #OCD #Spoonie #abodyofhope abodyofhope.wordpress.com

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.

fierce

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.

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

Flow Like Water: Reflections on CRPS / RSD year 2- Guestpost by Rikki Smith

I Never thought You Could get a Disease From a Car wreck RSD CRPS

I never thought a car wreck that did damage to my elbow

would stop me from walking an entire year later.  I never thought you could get a disease from a car wreck.

I never thought I would have to depend on anyone else
to get me through tough times in my life.

I never thought I would face an uncertain future
without the ability to answer the tough questions.

I am by nature a very opinionated, strong minded, determined and focused individual. Having my life turned upside down by an unforeseen event is not in anyone’s plans of course, but, the thought of it was always something I thought I knew exactly how I’d handle as a ‘strong and independent woman’. Little did I know that my ultimate undoing would also be the one thing that allowed me to become more whole as a person.

Looking back on last year’s thoughts on how this disease impacted my life over the first year of learning to deal with it, I was already at a place of seeing the blessings that came with the pain and the horror. I make it a priority to find good in all things or at least as many as possible. I don’t believe things are one way or another in life. I believe that things are the way we interpret them to be. Our perception and reactions to life determine what we take from each instance and whether or not we count it a blessing or a curse or in this case admit it is equal parts of each.

There are still times where I try to convince myself that this is all a bad mistake and that I’m really ok (when I feel good it’s easier to lie to myself) and the pain was just a figment of my imagination trumped up by my brain somehow. I still have those moments or days of denial where I really do want to refuse to believe that I will have to deal with this for the rest of my life. There are also days where I think I have it under control and manageable and that I can handle it. I fool myself into thinking that I am the one in control, not the disease.

I am learning that there is more to it than drawing hard lines, coming up with definitive answers or even being able to list symptoms. Everything is so fluid and ever changing with CRPS. Life equilibrium. Balance has never been so important and never meant so much to me as it does now. I’m learning to live in a state of seeking my own level the same way that water does. When my pain levels are up, my activity levels go down and vice versa. When I am frustrated with my limitations, I find ways to realize the gains that they have brought me in my emotional life. My physical life has forced my emotional life to do some very large sacrificing….and what I thought was me becoming weaker is turning out to be me learning to become stronger.

You see….. when life begins to strip you down to your core and bend and stretch you to your breaking point, you have to adjust and adapt and learn new methods. There is more to it than that though. You can get caught in the label, in the diagnosis, in the symptoms, in the daily rigor of the battle and forget that you have a life to live beyond the disease. You can forget to choose to take in the beauty around you, to find new strengths, new outlets, new hobbies, new friends, new resources, new paths to use your talents on.  It is so easy to get stuck in the mud of the issues that come with CRPS/RSD….but we who have this disease have to learn to rise above and be water and flow and seek our own level.  We have to learn to live differently. Life may never look the same, but that doesn’t mean it cannot be beautiful, or full of adventures. It just means we have to change our definitions and more than that we have to push ourselves to make new expectations, focus our perceptions and define our interpretations in a way that helps us grow and find positive experiences in the struggles that we face.  If we don’t adapt we become stuck in that mud and the weight makes us feel like there is too much work involved in moving forward we become depressed and despondent because our expectations are still tied to our old life and our old abilities.  I’m learning now to flow, to adapt, to change my focus away from what life was, what I used to think, expect, want, etc so that I can still have dreams, still have goals, still accomplish things. Now I do so as part of a team, with the help of friends, family and loved ones. The disease brings its own challenges, but if we accept our lives are not determined by external circumstances, but rather by our mental approach, we can and we will triumph despite the challenges, no matter what they are. Rise to the top, find balance, seek your own level and don’t stay stuck in the mud. Make the choice to look for a new perspective.

I never look forward to the pains I know the next year might bring, but I do actually anticipate with high hopes the new horizons and the new vantage points that come on the other side of the valleys. I plan to enjoy my journey no matter what, for as long as possible!!!

~Rikki Smith

I am so honored to have Rikki as a guest writer for us 2 years running! I have revisited her post from last year “Broken Things can be Fixed” several times throughout this past year and it still chokes me up. She has so much wisdom, insight and vigor, it is easy to forget she is in her second year of Complex Regional Pain Syndrome. Thank you to Rikki for lending us your voice today and allowing us to share your end-of-year reflections on your ever-inspiring journey. Rikki has many hobbies including traveling with her family, uplifting others around her, and she has a passion for Celtic Mythology. Check out her fascinating Facebook page: Celtic Lore and Mythology.

To see more RSD/CRPS articles, artwork, and poetry, visit the Categories menu for “RSD/CRPS” or click here. 

The Unsung Heroes, a Story of Hope #Calmare

"Warrior" by Marcie Ann | The Unsung Heroes, A story of hope #Calmare #RSD #CRPS

Warrior Painting by Marcie Ann

A nightmare, a gauntlet of choices… of invasive procedures. Pills, so many pills. The looming threat of addiction, as I searched to end what seemed to be endless suffering. RSD: a constant adversary.

Written by Marcie Ann, Guest Contributor.

I asked, where are the heroes and the heroines of this nightmare I’m trapped in? Who will save me from this monster?

Abandonment: As friends, family, and the medical community tire of my seemingly infinite needs. My very existence is a constant reminder for those who love me and those sworn to heal. They too are helpless.

It’s the never ending story; it’s the song that never ends.

And then, in the heart of a man named Giuseppe lays a seed and the courage to nurture it, to fight this relentless beast. And so the heroes and the heroines enter what seems to be a losing battle for for the victims, the characters caught in the RSD nightmare.

Calmare Therapy, and those with the courage, compassion and integrity to stand beside us. And those with the determination to end our suffering enter the storyline, rewriting our never ending story, splashing its pages with hope for a life free from pain and suffering.

My innocence and naivety lost, with overwhelming thoughts of suicide, I set out on what I believed to be my last and final voyage to live.

Standing in a small clinic all the way across the country, 3,000 miles from home. Instead of being faced with the anticipated judgmental glances of typical doctor’s offices, I am greeted with hopeful smiles.

Now, I sit across the desk from Dr. Stephen D’Amato who explains to my skeptical mind the wonders and success of “Scramble Therapy” in fighting RSD. As he spoke, it came to me: HE CAN SEE ME. Although sitting across from him appears to be a healthy woman, this hero knows my enemy. The internal implosion, the woman trapped in the burning inferno. A spark, a small ember of belief ignites in my numb heart.

I walked into the room to begin this Calmare journey. In the corner stands a seemingly insignificant machine. In this machine and in the hands of my hero and heroine, I place my last hope.

This is that moment.

And so nurse Brandi, Dr. D’Amato and me, Marcie Ann with Giuseppe’s machine set the pen to the parchment, charging into the story together. And after 9 treatments, we win.

Calmare isn’t a cure; RSD is a lifetime foe. But because of one man’s dream, and some courageous men and women, I no longer walk alone. I no longer walk as a helpless victim. With Calmare, my hope is alive.

********

Marcie Ann, our guest contributor is involved in the online RSD/CRPS community where she has been an educational advocate for Calmare Therapy ever since her first treatment. Many individuals have received pain relief after hearing Marcie’s story. Marcie and others are advocating to make Calmare more widely available. I am so grateful to include Marcie Ann’s powerful story on my blog. 

Video on Calmare Therapy & RSD

Calmare Treatment Center Locations

Article on Calmare & Insurance

Stronger than Monsters: Chronic Pain

(Trigger Warning: Addresses thoughts of death.)

Before a sprained ankle which turned into the chronic pain disease they call Complex Regional Pain Syndrome changed my life at 22 years old, I never knew anyone could feel that much pain. After the doctors told me that this would be PERMANENT, I thought, “I cannot go on like this.”

When I learned that the pain of CRPS can spread all over the entire body and into the organs, I said, “I refuse to live that way.”

Other survivors told me of their broken un-moving bodies from the damage and spreading of CRPS over time and I knew: I would never be able to endure it.

Even in all of my pain, I knew there was so much more to be had. If I was at my breaking point of what I could tolerate then, the future I was promised would never be one I could shoulder.

Fear and doubt spread into me like the pain biting into my body. The fire in my bones was a kindling waiting to ignite the rest of the forest. The pain living inside of me was a monster whispering promises of pain and ensuring me a future of horrors. I knew I could not live through it.

*

All of my nightmares came to visit me. More, in fact. The years I spent in fear of the pain to come could have never prepared me for the obliteration of my senses which would ensue in these recent years. I cannot say I am still standing, but to say I am still here and just to be coherently typing this is a tremendous miracle, celebration and gift. Yes, even in worse pain than ever before, and much worse than I could have ever imagined- it is still a gift.

The thing about pain is that most people see the other side of it. You go through the hard parts and crawl out on the other side feeling stronger. But what if the worst pain you ever felt was a only a promise of more terrible things to come? That is what some illnesses like RSD, CRPS, MS, ALS, Chiari Malformation, and Arthritis often are: degenerative, debilitating and extraordinarily painful.

I thought I saw into my future of pain, but I could never have foreseen exactly THIS.

This journey has been unique to me as now I realize everyone’s is. I so feared my future because I believed mine would look like someone else’s that I had read about online or was told of in a doctor’s office, but no one’s life is so simple. I have met more unimaginable monsters– but I have survived all of them when I once was sure I couldn’t bear my first few years of chronic pain. I used to live each moment in fear of the future and now that the future has come to pass, how can I continue living in fear? I have fought worse monsters than I was preparing to battle, and I am more grateful to be living now and less fearful than ever before.

Don’t expect the worst. But if your worst comes, don’t assume you know how you will weather it. The strength and resources come at the step you need them, not years or months ahead. Have faith. You are so much stronger than you know.

*********

“Those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.”

Isaiah 40:31

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”  Joshua 1:9

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Featured artwork by Born in November. Thank you to the artist for allowing her powerful, striking photograph You Could Feel the Sky to be displayed here. Please go to her shop and buy one of her conceptual art images or visit her home decor shop to purchase a gift for the holidays.

thelastsparrow.etsy.com

Etsy.com/shop/borninnovember

Mask: Poem by Guestblogger

At the End of the Day by BorninNovember on Etsy | "Mask" poem on aBodyofHope.wordpress.com #spoonie #inspiration #art

BorninNovember ~ Etsy

~Mask~

Somewhere behind this smile

Lies a person.

Somewhere behind this smile

Lies a person in pain.

Somewhere behind this smile

Lies a person in agony.

Somewhere behind this smile

Lies a person in fear.

Somewhere behind this smile

Lies a person crying inside.

Somewhere behind this smile

Lies a person who feels the judgment.

Somewhere behind this smile

Lies a person.

*

Would you think differently

If the smile was gone?

If you could see the pain?

If you could feel their agony?

If you could feel their fears?

If you could see their tears?

If you knew of all the harsh words?

*

Sometimes the person you see

Is not the person at all.

Sometimes the smiles you see

Are nothing more than a mask.

Sometimes what you are allowed to see

Is only the illusion of what they want you to see.

Sometimes what you see

Is nothing more than what’s allowed to be.

*

You see, we live in a world…

A world that forgets what really should be.

A world that forgets how unique we all were meant to be.

A place where we place value on things that will fade,

Instead of loving the things that will stay.

*

So we create this mask.

We hide behind it.

Not allowing our lives to be the way He created.

At times we take it off.

But too often we leave it on.

Trying to live up to an expectation

Of so many things we are not.

*

It’s funny how we are the first to say,

“It’s ok, tomorrow is another day.”

Only to punish ourselves for needing that extra day.

*

You see, when you deal with illness: Chronic, Terminal, Disabilities…

You, at times, see yourself as the world has defined.

Instead of seeing yourself as HE has defined.

*

My challenge for you…

Take off that mask, even just for a moment, a day or two.

Allow yourself to be

Exactly how God designed you to be.

Don’t feel ashamed.

Don’t feel you are anything less.

You are simply the Best!

*

For those who love you,

For those who care,

They will be there.

They will care.

No matter what Mask you decide to wear.

-written by Kristen Braatz

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

Kristen Braatz is a writer of poetry, loving mother, Chronic Pain survivor, and has other chronic illnesses. She is involved in her church and in the online chronic pain support community. Two of her favorite passages are Isaiah 45:9-10Isaiah 40:28-31. I am so grateful she is the first guest contributor to A Body of Hope!

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

At the End of the Day by BorninNovember on Etsy | "Mask" poem on aBodyofHope.wordpress.com #spoonie #inspiration #art

BorninNovember ~ Etsy

At The End of The Day” by artist BorninNovember on Etsy.

Please visit her extraordinary shop to purchase original artwork and prints and view her fine art collection on Flickr.

In Her Shoes: poem

Stiletto Memory" Sketch by Mary Mattio #abodyofhope | "In Her Shoes" #Poem for #InvisibleIllness #IIAW14

Stiletto Memory

~In Her Shoes~

She asked me in a nice voice if I would wear her shoes.

It wasn’t the best choice, but how could I refuse?

~

The moment they slipped on, I swear I heard a crack.

Then something within me sharply turned to black.

~

The shoes no longer held me up as I fell to my knees.

I could not bear the weight of my dear friend’s disease.

~

She got down on the floor with me and held me for a while.

She put the shoes back on her feet and then she forced a smile.

~

I don’t know how she wears those shoes!

She must have so much strength.

I’ll never understand; I wish I could help her bear the weight.

aBodyofHope

*********

This was written in honor of all of the women who live with invisible illnesses and invisible pain. May they have friends who try to understand what they face.

Invisible Illness Awareness Week 2014

*****

Poem featured on The #Spoonie Daily E-Magazine

and InvisibleIllnessweek.com

“Waiting for my Real Life to Begin”

Woke up with this song weighing heavy on my heart and in my head. Just because I cannot listen doesn’t keep music from playing inside of me. If you are like me and have trouble listening to music, the video includes the lyrics.

The second verse: “When I awoke today suddenly nothing happened.
But in my dreams I slew the DRAGON” plays into living with chronic illness and life now from a bed. But just as Colin Hay’s “love” keeps telling him to let the sun shine in and keeps reminding him there is already a plan; this is the same knowledge I have that God has a plan for me also. Not just in the future, but right now… I’m living it. My real life has already begun- even when it’s hard to feel it.

Sometimes we keep waiting for everything good to start up, and our purpose is right there in front of us. God bless you.

How Robin Williams saved Superman

In 2004 I read Christopher Reeve’s autobiography, Still MeI had recently been diagnosed with a neurological condition which was quickly crippling me at 22. And Superman had just died.

I didn’t so much read the book as I did listen to it on audio book. Christopher Reeve’s voice filled my car as he read his own words. I still remember how his breathing machine sounded as he gasped for air while still comforting me with his powerful life’s message of hope, courage and perseverance.

While Christopher Reeve’s autobiography is one of the most inspiring and memorable books I have ever read, this story is about Robin Williams and their friendship.

After the dashing hero’s tragic accident, he was in the hospital for months. He underwent a series of surgeries and it was clear he would never regain feeling or movement below his neck. In the days after, Reeve had lost all hope, yet he could not even take his own life, had he tried.

Superman’s best friend was a fuzzy little curly-haired man with sparkling blue eyes and enough energy to light up Manhattan. Robin Williams and Christopher Reeve had met long before either of them were recognizable. They were roommates in college at Julliard and remained best friends thereafter, supporting each other’s acting careers and their families spent time together.

Robin Williams appeared in Reeve’s hospital room, fully dressed in scrubs and a face mask, speaking in a Russian accent. “Time for your rectal exam!” Williams exclaimed. He spent the day visiting with Reeve and helping his friend regain the much-needed light he had lost.

In his book, Christopher Reeve wrote,  “For the first time since the accident, I laughed. My old friend had helped me know that somehow I was going to be okay.”

Reeve and his wife went on to change the face of spinal cord injuries along with the perception and treatment of paralysis through the Christopher and Dana Reeve Foundation. Robin Williams became involved in Reeve’s foundation, and they continued encouraging each other over the years. Williams took a greater role in the foundation after Reeve and his wife passed…what a great friend.

Ever since reading Reeve’s autobiography, whenever I would see Robin Williams, I thought: he may have saved his best friend’s life. And without that friend to penetrate the darkness and shine a light on the hope he could not grasp on his own, Reeve may have never started the foundation which has been a beacon for so many individuals. We all know Robin Williams for his abundance of sensational talents. However, I think I can take liberty in saying that those who he loved knew the kind of friend he was and the legacy of love he will leave behind with them.

My first entry is dedicated to Robin Williams and to friends who lift each other up out of dark places.

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