This Day doesn’t belong to This Pain

You have every right to say that your days are bad from diagnosis onward. Pain roars and screams and spreads and bites down. It truly touches every part of our lives, and tries to destroy all that it touches.

But you are not your body. You are more than flesh and bone.

You have the power to tell your story the way you want it heard.

You don’t have to choose whether your days are black or white, either good or bad. This isn’t a multiple choice test between succeeding or failing.

We are all striving to find balance every day, moving forward despite our circumstances, seeking our best selves.

That is a victory.


The ‘Shame’ of Chronic Illness and Pain

Brene Brown says that, “if we speak our shame, then it begins to wither.” This writer who suffers a similar condition as I, has written so openly and powerfully on the vulnerability of illness. This is a revelation, and a battle cry. Please read to the end.
(Trigger Warning)

Chronic Joy Ministry

CJIfWeSpeakShame.jpgShame derives its power from being unspeakable….
If we cultivate enough awareness about shame to name it and speak to it,
we’ve basically cut it off at the knees.
Shame hates having words wrapped around it.
If we speak shame, it begins to wither.”

Brené Brown

Over the summer, I read Brené Brown’s fabulous book Daring Greatly. The book follows her famous TED Talk on vulnerability that previously inspired me to write on the power of vulnerability.

The full title of the book is Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent and Lead. It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more wholeheartedly and to connect more with others, as well as helping us to overcome the destructive burden of…

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An Open Letter to the Doctor Who Gave up on Me

I know I’ve already published 2 new blog posts today, but I have to share this incredible post by a newer blogger I’ve been following. I know everyone with a chronic illness will relate.

Life with an illness

Dear Doctor,

Before I start, I want you to know I’m not even mad. You’re not the first or probably the last to turn over my case. The moment that you gave me the pity look, and said “you will never get better, you will have a feeding tube the rest of your life, and I can’t help you.” Tears immediately welled up in my eyes, and my stomach sank to my feet. That was the worst feeling, when you gave up on me. 

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My Brain is Lost: Brain Fog…Again

I have been a zombie since the holidays. I feel like my brain slipped out among the Christmas gift wrap, and I’m still looking for it. Thankfully today I can string a few words together, but it’s still not good. The poster above is my great accomplishment for today. I hope it makes you smile.

I’ve been asked by my doctors in the past why I don’t like to take “enough” pain medication to really get my pain under control. But, it’s exactly this glazed over, cloudy-headed feeling I’m trying to avoid. 

There’s a fine line between managing pain and taking so much medication that my brain absolutely can’t function. But, it means that my pain will always be on top of me. It’s something I accepted a long time ago. 

The truth is, I need my mind. I need to have conversations. I need to write. I need to connect with people I care for. I need to be creative. I may be in too much pain to move, but I need my mind to continue being me. 

Because of severe Postural Orthostatic Tachycardia Syndrome, low blood pressure, Chronic Fatigue, and the Complex Regional Pain Syndrome/RSD now attacking my brain, it feels as though my brain cells go to sleep for long periods. It’s the settling in of a brain fog cloud that curls up in your head and decides it’s not leaving. 

So I fight. I take my vitamins. I do deep breathing. I struggle to have conversations even though most of the time the other person has to guess what on earth I’m talking about. Words won’t come. I fight by playing word games on my phone. I fight by trying to write articles that never make it to the blog. I fight by moving more. By moving less. By eating better. By drinking more water. Take less medication. Take more again. By doing something creative. I try to learn something new…if I could only think, think, think! 

Brain Fog always causes me depression. Maybe it’s because my neurons aren’t firing. Yes, that makes sense of course. Or maybe it’s the sheer frustration of the thing. 

I envision the CRPS/RSD eating away at my brain. Just like it has atrophied my leg. Just like it has bitten a large chunk out of my left arm. I should stop envisioning that image, but that’s exactly what it feels like. Parts of me are slipping away, no matter what I try to do. 

With every bad pain flare that attacks my head, I feel a little less like myself. Am I fading or becoming someone new? 

Are we the zombies in the zombie apocalypse? The brain-fogged following the bright quick-witted around for a great conversation? It’s not brains we’re drooling for… It’s stimulation, laughter, the kindness of another person, compassion, something interesting to wake the atrophied pieces of our pain-addled minds. 

That’s not a kind depiction of myself, but it feels that way when my body and mind are playing tug of war between flight and fight. Even though the meds may not have done it, I suppose my mind has flown from the suffering on its own. Maybe my brain isn’t lost after all. Maybe she has simply run away. 

3 Uplifting Quotes for your New Year

Happy New Year! These are 3 beautiful quotes I would love to start my year with. Especially while I’m really struggling, finding uplifting, peaceful messages helps me get from one day to the next. It’s especially during these times, our souls need feeding. I hope these quotes might help you today as well- with whatever you may be battling. 

It’s a nice reminder that all of our every day tasks matter. As my friend told me a couple weeks ago, all things we do can be ways for us to worship. 


To be so strong that nothing can disturb your peace of mind. To talk health, happiness, and prosperity to every person you meet.To make all your friends feel that there is something in them. To look at the sunny side of everything and make your optimism come true. To think only the best, to work only for the best, and to expect only the best. To be just as enthusiastic about the success of others as you are about your own.To forget the mistakes of the past and press on to the greater achievements of the future. To wear a cheerful countenance at all times and give every living creature you meet a smile. To give so much time to the improvement of yourself that you have no time to criticize others. To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble. To think well of yourself and to proclaim this fact to the world, not in loud words but great deeds. To live in faith that the whole world is on your side so long as you are true to the best that is in you.

Quote by Christian D. Larson


For me, trees have always been the most penetrating preachers. I revere them when they live in tribes and families, in forests and groves. And even more I revere them when they stand alone. They are like lonely persons. Not like hermits who have stolen away out of some weakness, but like great, solitary men, like Beethoven and Nietzsche. In their highest boughs the world rustles, their roots rest in infinity; but they do not lose themselves there, they struggle with all the force of their lives for one thing only: to fulfil themselves according to their own laws, to build up their own form, to represent themselves. Nothing is holier, nothing is more exemplary than a beautiful, strong tree. When a tree is cut down and reveals its naked death-wound to the sun, one can read its whole history in the luminous, inscribed disk of its trunk: in the rings of its years, its scars, all the struggle, all the suffering, all the sickness, all the happiness and prosperity stand truly written, the narrow years and the luxurious years, the attacks withstood, the storms endured. And every young farmboy knows that the hardest and noblest wood has the narrowest rings, that high on the mountains and in continuing danger the most indestructible, the strongest, the ideal trees grow.

Trees are sanctuaries. Whoever knows how to speak to them, whoever knows how to listen to them, can learn the truth. They do not preach learning and precepts, they preach, undeterred by particulars, the ancient law of life.
A tree says: A kernel is hidden in me, a spark, a thought, I am life from eternal life. The attempt and the risk that the eternal mother took with me is unique, unique the form and veins of my skin, unique the smallest play of leaves in my branches and the smallest scar on my bark. I was made to form and reveal the eternal in my smallest special detail.
A tree says: My strength is trust. I know nothing about my fathers, I know nothing about the thousand children that every year spring out of me. I live out the secret of my seed to the very end, and I care for nothing else. I trust that God is in me. I trust that my labor is holy. Out of this trust I live.
When we are stricken and cannot bear our lives any longer, then a tree has something to say to us: Be still! Be still! Look at me! Life is not easy, life is not difficult. Those are childish thoughts. Let God speak within you, and your thoughts will grow silent. You are anxious because your path leads away from mother and home. But every step and every day lead you back again to the mother. Home is neither here nor there. Home is within you, or home is nowhere at all.
A longing to wander tears my heart when I hear trees rustling in the wind at evening. If one listens to them silently for a long time, this longing reveals its kernel, its meaning. It is not so much a matter of escaping from one’s suffering, though it may seem to be so. It is a longing for home, for a memory of the mother, for new metaphors for life. It leads home. Every path leads homeward, every step is birth, every step is death, every grave is mother.
So the tree rustles in the evening, when we stand uneasy before our own childish thoughts: Trees have long thoughts, long-breathing and restful, just as they have longer lives than ours. They are wiser than we are, as long as we do not listen to them. But when we have learned how to listen to trees, then the brevity and the quickness and the childlike hastiness of our thoughts achieve an incomparable joy. Whoever has learned how to listen to trees no longer wants to be a tree. He wants to be nothing except what he is. That is home. That is happiness.

Quote by Hermann Hesse 

I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.

 Quote by Helen Keller

The HIV/AIDS Crisis changes Healthcare for Chronic Illness Patients

World Aids Day 2017

So much progress has been made for a killer autoimmune disease/infection/virus that was once surrounded by so much prejudice and misinformation.

Healthcare was far out of reach. Doctors did not seem to understand. The public turned their backs. 

Meanwhile men, women, children, and infants were infected, without care, suffering and passing away. 

So much has changed in a relatively short period of time. Still, there’s a long way to go, especially internationally.

Maybe you have a chronic pain condition and feel as though doctors, society, and family have singled you out as a drug addict. Maybe you’re being denied treatment. We continue seeing our own friends in pain pass away due to lack of care… Or if you’re a rare disease survivor and are feeling hopeless about the healthcare situation at hand, please keep this hope in front of you.

If the HIV/AIDS community could create a revolution for themselves in the midst of such a horrific crisis, please keep hope alive that we can also. But we can only do change the system if we stay united.

#worldaidsday #hivawarenessday #raredisease #rarediseaseday #sicklivesmatter


A Voice Unheard: Author Interview with Chronic Pain advocate, Jane Gonzales

I am so happy to welcome, author, poet, blogger, and advocate for the chronic pain community, Mary Jane Gonzales!

I was given the great honor of being asked to contribute a piece for her book, A Voice Unheard. After reading it in its entirety, I immediately asked Ms. Gonzales for an interview! I know it will impact every reader, disabled and abled alike.

Congratulations on publishing your 10th book, A Voice Unheard  

You have very generously allowed your powerful poetry to be shared here on a Body of Hope in the past, but this is your first interview here. I’m excited! Shall we begin? 


1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?

Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”! 

2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?

This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.




3. Aside from writing, what do you enjoy doing in your free time?

My pastimes would be reading, writing and crafting (especially, card making and scrap booking).


4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?

Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.


5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?

Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about  a community/ involving members of  the community. I found that to be a bit scary, actually.

Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!

Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.


6. How would you describe your personal writing process?

(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)

I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.

7. What is your favorite part of being an author?

My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.

What is your least favorite part of being an author? 

My least favorite part is marketing i.e. self promotion.

8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?

What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.

9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?

Because they need to be told!


10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?

Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.

I wrote it now because I couldn’t be silent anymore.

11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?

I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.

A Voice Unheard is available for your Nook, tablet, or download as PDF ebook at Smashwords.  

Interview was first published April, 2016

Life Reimagined: Four Years after RSD/ CRPS, by Rikki Lynn

Four Years After RSD/CRPS

Guest Post by Rikki Lynn

So, Life has become this thing that I now bargain with on a constant basis. Most people do that, I believe. We all say, “Well, if I go to the gym today I won’t have to feel guilty about the ice cream I had after dinner last night”, or “If I take the kids to pizza tonight, I can feel okay leaving them with the sitter tomorrow while I’m at the baby shower for the new co-worker I’m trying to befriend.” So it goes, one long life of never ending compromises. Only mine looks a little different.  

If I grocery shop today, then tomorrow I can rest and the following day I can go to lunch with a friend, stop and get those few things from the store, and maybe get a case of water from Costco if my feet don’t hurt. Then, if by the end of the week, I’m feeling okay, I can try to accomplish the other errands I might still need to get done.

 A full day out running a few errands can quickly end any future plans for the week if I don’t take a rest day between, or make time for healing foot soaks, and be very strict on making sure I’m taking my supplements.

Far gone are the long days of running around accomplishing an entire list of things and still preparing a hot meal and going strong until bed time and still getting up to do it all again the next day, and the next, and the next. That is no longer my life. I miss that life. So many friends think, “Oh, what I wouldn’t give to not have to work” …… I promise if you are one of my friends who thinks that, you would not give what I have given to not work. The cost is way too high a price to pay. I’d gladly work in exchange for a life I can enjoy and one I can dictate my daily routine and plans for. 

Alas, things are what they are, and life is what it is, and so the story goes…make the best of it. We hear that often, don’t we?  But what does that look like, in practice, in real life, played out? 

What can that look like in your life?

Suffering doesn’t always have to be ugly. You can make it sparkly, and it can have its days where it even feels pretty. 
You don’t believe me, I know. I didn’t believe me either when I told myself I didn’t have to suffer the way I was. I have a knack for proving people wrong though, including myself. I’m stubborn like that.

It’s definitely a forced different way to look at life now. Since nothing is the same, nothing’s the same…. so I’m trying to adapt so that not everything is stolen away. I’m trying to find ways to be flexible in the life I’m left with and rearranging things to fit my new life. 

I’m adjusting, and instead of saying ‘no’ to everything …I’m trying my darndest to find new ways to say “maybe” and get creative because “maybe”, just maybe, I can say yes to a few of those things. I’m so dang tired of saying no to everything I once said yes to.  Before you think I’m suggesting everyone or anyone can just ‘do’ all the things we once could, or that any given day we can accomplish these triumphs, I’m not… but once in a while finding creative solutions to things that are bothersome can become things that are fun!!  

So here are a few thoughts to share, just to give you an idea of what I’ve been talking to myself about recently.

 I do some things already on a regular basis like curling my hair or putting makeup on about once a week before my Mister comes home from work so he is greeted with a ‘done up’ woman who looks nice for him. I enjoy that feeling. I am so keenly aware that many of us can not always do this type of thing by ourselves however, and would need help to do our own hair or makeup because of the location of our injury/damage. Well, let’s think creatively…

How about a girl’s night with girlfriends- one of them could host a ‘make up party’ giving each other facials or doing nails and toes  (or whatever you prefer). Someone else can bring treats, ask one to do the arranging and invites, then all you have to do is be present. There are so many types of get-togethers for men and women alike. Party games or activities can be planned, it can be in a house as low-key or action packed as you would want. Everyone can be included to whatever degree fits for them. Often a great source of ideas is Pinterest or Google search baby shower, bridal shower, and party games for adults.  

I truly believe this is an important thing that we should try to do on a regular basis. And I’ve always had that one friend who absolutely loves to entertain, don’t you? It really goes way beyond that.

It’s good to let friends feel like there is something they can do to help, because they often feel like you suffer, but they can’t fix it, or offer any solutions. Involving them in something positive they can do for you actually allows them how to add a meaningful gesture, and that means more to everyone involved. You see, so many of us with chronic pain get stuck being left out of outside activities and eventually left out altogether because people don’t think we can or want to do things and often they are right. We’d say ‘no’ anyhow even if they asked. So, they quit asking us. Our friends feel like they can’t fix our pain, so they feel a sense of ‘helplessness’ that leaves them feeling bad when they are around us. That isn’t our fault obviously, but really it isn’t their fault either. It is human nature to want to solve problems or avoid them. Let’s face it, chronic pain is a problem. At least it feels like one to most people who have to live with it in their life in any capacity at all, even at a distance. People tend to avoid what they don’t know how to fix. We tend to feel neglected, and then rejected, and then hurt, and then angry.  The whole thing is more of a misunderstanding than it is an actual problem that can not be solved.  We can give our friends tools to be involved and active in our new lives, but WE have to be the ones to say what we need from them, exactly how it should look, and we should not expect it all to be ‘a pain in the butt’ as it were. WE, as chronic pain patients, need to (yes I know I hate it too) do one more thing to add to our never ending list of ways we have to change our lives, but we must make a mental note to give our friends and family the opportunity to create fun and memorable moments in our lives. We can do that. Even if we can not get out of bed, they can come and sing for us, read poetry, paint for us, show us pictures of things outside they saw during the week, tell us about their week…but not the boring stuff…ask about random things! Have them do a mental note to seek out certain things for you while they are out- like how many times did they see something with an elephant on it? (Or whatever your favorite animal might be.) Maybe ask them to try to notice if they see it and keep track of where they were and how many times and to snap pics if they have the chance to….  it becomes a way for them to connect to you from where they are and for them to remember that they have the chance to bring you into their day and to bring their day to you at the chance when you get together they can share those moments and hopefully share what they thought about at the moment.  Maybe you set out certain goals for certain friends that you know will help them do something fun for themselves that you know they might not do otherwise but you push them to do because you can’t do it…so you become their reason and you live vicariously through them…not as fun I know, but how great to be an inspiration to another human.  Maybe you just sit on a blanket in your back yard with your pet and you talk about the things you wish you had done with your life while you had your health, and you figure out if there is an alternative way to do something similar to any of those things from a different vantage point-or in a different capacity than you once had imagined. 

Life is all about the art of being flexible and adapting to whatever comes our way. We surely got dealt a hand that doesn’t look the way we wanted it to, some of us can’t even use our hands anymore at all….mine are much more painful than they once were but still useful to a degree at least for now.  My attitude, my will, my mind, my nerve, my grit, my relentless pursuit of life, those are all things that this pain can not take from me without my consent. I will not give it. I will continue to find ways to bring life to my door, to barter with my body for one more day and find a way to love this life despite the pain. For me, life is about living it with my arms wide open. Some days I can hardly lift my arms and every great once in a while I can dance …. I choose to celebrate the days I can dance and to plan for the next one that comes along, hoping I can wear heels 😉  I choose to be that kinda’ girl.  We can do this- together, we can find ways to cope, to manage, to lift each other up, to share a smile across the miles, to learn from one another, to gain new tools that help us manage better, to be there for each other in the hardest, darkest moments.

WE can do this because WE ARE WARRIORS and we will not go down without a fight!

Part of that fight might be a pajama party with a pillow fight and ‘The Notebook’ on the tv,  and it may even be in the middle of the day if it needs to be- only one other friend there if that’s what it takes. We have to find those moments. 

Make life come to you if you can’t go to it. 

Don’t feel like you have to lose your life because you have to say no to things. Find things to say YES to…and create things you can get your friends to say YES to as well ❤



This is the 3rd year Rikki has shared her experience with us. Read her thoughts in her first year after diagnosis here in “Broken things can be Fixed”. As her life changed due to CRPS/RSD, you can read how she changed with it in her second submission here in “Flow like Water”. Rikki has been so generous to share her heart with us, allowing us insight into her ever-evolving life as she learns and grows through CRPS/RSD. Each post is insightful on its own, but I encourage you to take the time to read all three as a trilogy. Thank you so much for sharing your beautiful soul with us, Rikki! It is always my privilege to feature your work!

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

“Flow Like Water” is Rikki’s year 2 reflection of life with CRPS/RSD. Please read her brand new guest piece, published today.


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…

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Broken Things Can Be Fixed, First year with CRPS by Rikki Lynn

“Broken Things Can be Fixed” is Rikki’s year one guest post- one of our very first guest contributions. Today she’s sharing her year 4 thoughts on her CRPS journey with us.


Strong Enough Poster | Broken Things can be Rebuilt article #spoonie #RSD #CRPS #Fibro #MS #CFS #Chiari #Migraine #invisibleillness #chronicpain

Being Broken, I roll over and apologize yet again. I am sorry I am broken. I mean it when I say it.

Agonizing pain makes me the unbearable one. I moan, I cry, I writhe in pain. That isn’t what really hurts. The real pain comes when it wakes you up. When this beast reaches past me and begins its assault on you. It strikes again in the middle of the day when a young boy wants to play and have fun, but he can’t ask because he loves me and he sees that I am in agony. So he suffers quietly trying not to be hurt that he can’t ask. Always the thoughtful loving child he would not want me to suffer. I don’t want him to suffer and feel alone even in my presence. This disease spreads the pain far beyond my arm, my leg, etc…

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Tea With Jennifer

Join me in a cup of inspiration!


I am so glad you have chosen to visit my website and I hope you will continue to come back to read more! You will see that I do believe that a positive attitude can make a huge difference! I truly hope that my website will reassure others that they are not alone with their battles; my goal is to help others!

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