Blog Archives

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!

Advertisements

Going Dim by Cammie LaValle, A CRPS Story, Part 1

Going Dim

Part I of II- By guest writer Cammie LaValle, 2016

 

(trigger warning)
Going Dim by Cammie LaValle
Photos of Cammie taken on the same day.

 

Remember that light inside of you that used to shine?  We reminisce about it in our heads; back 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, is now 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. Talk to others with CRPS/RSD here. Article originally published in 2016.
Thank you for visiting and sharing, -Mary

 

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

Sale on RSD CRPS Awareness Apparel!

I first began making shirt designs when the people in my RSD support group were distressed about medical staff touching or grabbing their painful, swollen limbs. I’ve experienced the same issue with doctors, nurses, and out in public. The first shirt was really a collaberation with many other women and men seeking a solution to this terrifying issue. This was the first design, and there are a few others which are similar. 

Since then, I’ve been adding different items to the shop bit by bit over the years. I hope it will raise a little awareness out there!

There’s usually a thread of playfulness running through my designs. Pain isn’t silly by any means, but how we present it can help others absorb it better.

  

The designs in the shop are either for people with Chronic Illness, or inspirational quotes. 

I’ve been creating more items with quotes from the blog lately. This is my favorite so far. I like to wear it when I’m going through an especially difficult time, as a reminder to myself. I think this slouchy, batwing fit looks great on every body type, too. 

Zazzle takes care of payment, printing, and shipping, and the proceeds I receive as a designer go toward rare disease research like RSDSA or NORD. You can customize anything you see. The shirt designs can be printed on many other items, and the quotes displayed on tops are not limited to women’s, or any particular style. They are only displays. 

There’s a sitewide sale this week! Just in time for RSD Awareness Month! Pop by, and peek in!

 https://www.zazzle.com/mixypixie/products

If you have a suggestion for a shirt or item, please comment below or email me at abodyofhope@mail.com 

Chronic Illness and Surrender

Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.

It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.

When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans. 

My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch. 

No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals. 

I was in control

Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path


Surrender is a difficult topic or act for most of us to comprehend.

I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?

Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course. 

“Do you want to do this yourself?” a nurse once snapped at me. 

Oops, I thought. But then…I knew my answer would have been, “yes.”

Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind? 

Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.

They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.” 

Illness can become your life if survival becomes your new goal

There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes. 

Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.

I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness. 

The world tells me to push, to fight, to Just. Keep. Going.

But I learn quickly that there is no push  in this game. Only tricks, and cheats, and strategy. 

It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.

Illness owns my body. 

There is no free will flesh. There is no- push for one more minute.  There is no- if I just take this pill.

This body has been exchanged, kidnapped, swapped for a rag doll.

Once, asking for help seemed an impossible exception only made in the most dire of circumstances. 

Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this? 

What better picture of grace?

Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray. 

Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.

My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.

God is in control, they say. They say it like an empty cliche. 

Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior. 

In this broken body, I see freedom.

(Re-posted from 2015)

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.

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

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.

Going Dim by Cammie LaValle, Part 1

 

Going Dim

Part I of II – By guestwriter Cammie LaValle

(trigger warning)
13942301_10208525636490424_1513281570_n

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

Writing Projects for November 2016

writing projects for November

November is buzzing with creativity among writers, bloggers, and in social media sharing as well; I want to take a beat to discuss a few of the exciting projects I know to be converging this month.

“NaNoWriMo” or National Novel Writing Month is kicking off today! Writers have been preparing, and now the task is at hand to compile a 50,000 word book in 30 days. Can you imagine the focus, commitment and creativity that requires? For anyone who is in the midst of writing a novel this month, I wish you the very best! If you are participating in NaNoWriMo or have in years past, please comment and drop us a message sharing a bit about your experience.

In the blogosphere, November is known as NaBloPoMo (National Blog Posting Month). Every day of the month, many bloggers will update their blogs daily instead of weekly or monthly. Keeping up interesting daily content with images, links, and maintaining visitor interaction is quite a challenge! Please support and share your favorite blogs during the month of November. If you are blogging this month, comment below to let us know where we can follow you, and what you tend to write about.

Gratitude writing challenges are popular with writers as well as on social media to celebrate Thanksgiving #NaNoPoblano. Whether it’s November or any month of the year, any project that encourages one to practice thankfulness is positive. Do you believe gratitude challenges create more overall gratitude year ‘round? Are you participating in a grateful challenge this month?

In my social networking community and blogroll, November is always Complex Regional Pain Syndrome/RSD Awareness Month. Many of my Chronic Pain friends are taking part in daily photo challenges, sharing daily facts and writing about their personal journeys with CRPS, creating infografics, and organizing community educational events. November 7th is Color the World Orange day, where we wear orange in support of the estimated 100 million suffering with daily pain diseases. I would love to invite you to wear orange on November 7th to help educate your community on chronic pain.

I am inviting anyone with chronic pain and chronic illness to email me at abodyofhope@inbox.com to share an aspect of your personal story. All of the CRPS/RSD stories shared during this month will be linked under the category RSD/CRPS in my categories drop down menu.

There are other important events in November like: Cancer Awareness Month (MoVember), Epilepsy Awareness, Alzheimer’s Awareness, National Caregiver’s Awareness Month, and November 13th is Caregiver Appreciation Day.

Whether you are a writer, a reader, a patient advocate, 0r showing your appreciation this month, I wish you: Passion, Growth, Gratitude, and Perseverance.

**********

If you are participating in a writing challenge or an artistic group project this month that I did not mention, please do share in the comments section! 

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

music-1

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.

giphy

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.

giphy1

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.

0205-boeing

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.

giphy2

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!

giphy3

Susan Sleggs

Reflective observations to inspire conversation

Dr Kent Herbal

High Quality Organic Herbal Supplements

The Adventure, No The Unfair Journey of A 25 Year-Old In A 80 Year-Old's Body

Not Just A Mom Blog, I'm A Real Person With Real Problems. My Health Issues, My Families Health Issues And My Experiences With It All.

Doss Doc's

Comedy Blogger Extraordinaire

Young, Hip and Bionic

What it is like to go through hip replacements at 30 years of age

Fearless

Diagnosis of a Chronic Disease Turned My World Upside Down

Life with an Illness

*Tips and tricks on how to get through life when you have a chronic illness*

My Instruction Manual

I never learned how to live, not really. So I decided to write a guidebook, an instruction manual” for how to be happier, healthier and more productive.

A Heart For Chelle

A raw and honest account of life on the heart transplant wait list

Welcome

Radical hope. Compassionate change. 501(c)3 non profit

Athlete On Steroids

Powerlifting, fitness and life with adrenal insufficiency

Holding Patterns and High Tea

all my benevolent monsters

CHRONICALLY COOKING 🍳 WITH FIRE

Cooking with Chronic Illness'

%d bloggers like this: