Category Archives: Guest Bloggers
Part I of II – By guestwriter Cammie LaValle
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
I have had many fearful adventures during my journey struggling with RSD/CRPS. Let me start off at the beginning…
Please help me welcome our guest writer today, Nikki Fortner!
Possible trigger warning to our readers.
I was diagnosed with RSD when I was 14 yrs old. I am now 16 going on 17. From the very start, I feared many things. I was scared I wasn’t fixable, I was afraid of what was going to happen to me, most of all I was terrified how my mom was handling it and I couldn’t help her and she couldn’t help me. After her fighting for 2 to 3 years with 5+ doctors to get a correct diagnosis we finally received one in June of 2014. The day we found out the diagnoses (of Complex Regional Pain Syndrome) a lot of emotions filled my mind and body. I was happy because we finally knew what it was that was causing me such horrible pain but I was scared because there wasn’t a cure for it. The doctor I see currently has honestly been the best doctor I could have asked for.
However, things turned the wrong direction on December 14, 2015. I was walking on a sidewalk and stepped into a hole and broke my ankle where the RSD is located. I was put in a cast for 8 weeks. During this time my RSD pain honestly wasn’t bad at all I was just scared of what would happen when I came out of the cast.
Here we are, present day two days after my recent nerve block and my scariest experience in my life yet. April 4, 2016, nerve block number 3. From the moment we walked in the door that day I knew something was off all around.
My normal lady who does my IV didn’t that day. The lady that did do it, however, messed up bad. When she put the IV in, blood went everywhere and she said it would be fine, but it wasn’t. My arm was burning and I just knew something wasn’t right. I got really scared and I looked at my mom and said, “I’m scared” and she said. “everything is going to be ok” and that when I freaked out and started crying again. I told my regular nurse and she came over and re-did the IV in my other arm and everything was okay after that. They took me back to the O.R and even back there I had this weird vibe. So it went on anyways, I thought it was just me.
My doctor did the time out and then gave me the anesthesia. He gave me one and realized it wasn’t enough because I was still awake. He gave me another dosage and that still wasn’t enough, so he hit me with one more and that knocked me out- hard. The procedure went on but this time, a medication was added to my nerve block to make it better and last longer. When I was trying to wake up something still didn’t feel right I didn’t feel like I normally do when waking up from anesthesia. It took me way longer than normal and by the time they wanted to discharge me I still felt dizzy and sick. We got the paperwork and we left.
The whole way home I slept which I normally don’t do until I get home. When we got home and I went to go to the restroom, everything went downhill from that instant I sat down…. all of a sudden I felt very sick to my stomach and dizzy. Thankfully, my mom was downstairs, but before I could even yell to have her come help me, everything went black, and I passed out for a good 10 minutes. My head slammed against our bathtub. Half my body was in the tub and the other half was out.
The next thing I knew I heard my mom screaming and I had literally 9 paramedics overtop of me sticking me, and poking me, and running tests until I woke up and threw up all over my mom (sorry for the detail). I was taken to the hospital by my house via ambulance where they ran more tests and determined it was too much anesthesia. They pumped 3 bags of fluids in me and sent me home.
Since then I have been fine and feeling better but that honestly had to be a terrifying experience of not only my RSD/ CRPS journey but my entire life as well. I’m so thankful to have people by my side during this journey as well, so thank you Nettie Moneski my mom, Noah Herman my boyfriend, Michelle Craig Hoyt a good family friend, Jimmy Shanks, my grandfather and grandmother, Amelia Catherine Gish my best friend, and to everyone else, thank you guys so much, I couldn’t go through this without you guys!! Love you guys so much!!
-written by RSD survivor, Nikki Fortner, age 16
Happy New Year, everyone! I have now been blogging since August, 2014 and I’ve met so many amazing people along this writing road. These individuals have taught me, inspired me so many times and in special ways, and they have become my friends.
Friendship and community were something I least expected from blogging, a venture I assumed would be one of solitude, but it has shown to be incredibly interactive and instructing to me because of all of you. It has been much too long since I have thanked my fellow blogger friends appropriately, so I’m going to finally accept an award that was generously given many months ago. Please check out the blogs below and follow them. [Full disclosure] I don’t spend a great deal of time each day reading blogs, so trust me when I say that they are well worth your valuable time.
Earlier this year, the hot steamy Migraineur blogger at SexyAchyMoody.wordpress.com took a day off from giving advice on how to stay freaky and fabulous with chronic pain to award my blog with the Encouraging Thunder Award! Thanks girlfriend!
Encouraging Thunder is a spell that grants the gift of thunder and protection for bloggers so they can master their true purpose. It was created by Raymond, founder of encouraginglife.co.
[Cue foggy mist, no… not brain fog.]
I now bestow the Gift of Thunder onto these wizards of the written word. May they be empowered to express themselves freely and truly, with magic of the pen… and the computer…and spellcheck…as their’s is the only voice like it in the world.
FindingoutFibro: My best blogging buddy (BBB), Jess, is a young woman sharing her life with multiple debilitating chronic conditions. In this article, Distraction Therapy, also published with Axis Dance Company, Jess shares the free, creative methods she employs to help her cope with her disorders. Jess has a broad range of knowledge on many aspects of health she shares through her blog, and is a passionate advocate for ableism and women’s issues.
IamChronicallyWell: Also known as “Chronic Nicole” discusses Selena Gomez’s recent Lupus diagnosis, and how the media has treated her, in comparison to how most people with chronic illness feel when they are newly diagnosed in Celebrities are Just like us part 2. On a regular basis, Nicole practices tongue-and-cheek writing so well that she should have a disclosure for readers with weak bladder conditions. Just sayin…
TheGadAboutTown: Mark shares his research of culture, literature and history, seen through the lens of his own witty, charming perspective. It was difficult to decide which of his posts to share with you, as they are always excellent. In this post, For Your Eyes, he asks the timely and wise question, “how much of our lives should we expose to the public?”
LifeinSlowMotionBlog: Both a chronic pain patient and professional counselor, this blogger shares what pain is teaching her. She asks the kind of questions that keep us up at night, the ones that no one else around us understand, she asks and explores through a compassionate and spiritual heart. In this post, How to Find Online Support when you have Chronic Pain, she guides readers to the best places on the internet to find caring support groups.
JustPlainOlVic: Vic, is a true family man, a father, and a husband. But beneath the surface of “Plain ‘Ol Vic,” you learn he is carer to a wife with Bipolar Disorder and Chronic Pain. Each day in his journal-style blog, he shares his life balancing work, raising his children, and being the support he has vowed to be for his spouse. In this heartfelt post, he shares a life lesson his grandmother taught him, and how it applies to his life today. [If you are on the flip side of a carer like Vic, I urge you to follow his blog.]
LivingwithObstacles: My best online friend, Julie began blogging this past year just after a heart attack induced by the effects of her 16 year battle with CRPS/RSD changed her life, yet again. On her blog, she writes about family, teen addiction, motherhood, chronic pain, loss of career, and how to rebuild on broken ground. Julie is a true warrior, and she has fought and won more battles than Archie Moore (most career knockouts in boxing).
KathleenBurkinshaw: is a blogger, mother, wife, chronic pain patient, and soon-to-be author of her first book! Her posts are like cracks of her soul shining right through the screen into yours. In this beautiful piece back in March, Unconditionally, she shares the meaning of real unconditional love, after losing 2 close family members. Stay tuned for Kathleen’s writing career to skyrocket, and you can say, you knew her when…
SublimeMercies: Charlotte Issyvoo makes a wheelchair and cane look downright en vogue! She is not only a chronic pain blogger, she photo-documents her vintage ensembles, is a passionate advocate for child abuse, and she shares her feelings on women’s rights among other topics she is always well-versed in. Here, in one of her latest posts, she shows us how to bring the best of 1970’s fashion to our wardrobe using pieces we already have. Move over Ferra!
TheSickDiva: One of my closest friends, Jenny, an RSD blogger, shares her struggles with chronic pain and the health system. No matter how severe her pain is, she leaves you with a message of hope, love of family, and keeping God first. Her latest post on her experience with the medication, Lyrica, will make you think differently about your own medications: How Vanity Saved Me.
Mary Jane Gonzales is a long time author and advocate in the chronic pain community. Find her on Facebook uplifting people in pain, sharing research, new blogs, poetry and hope for the weary on In the Blink of an Eye. Also, check out her brand new poetry share group, Poetic Hearts for a supportive community of creative writers and those who appreciate original poetry.
Escharae writes about her personal path through Multiple Sclerosis as a woman, student, and young passionate person working through the questions of life and illness all at once. On her page, you’ll find compelling videos of neuroscience advances, infographics of health related issues, and personal accounts of her own life. Find out more about how her journey with MS begins here on her MSanniversary blog post, and where it has brought her thus far.
To every single reader and fellow blogger who drops by, follows along on Bloglovin’, WordPress, Twitter, or by email, spends your very valuable time reading and showing your love, thank you so much! I feel truly humbled. Wishing you a happier, healthier new year ahead.
I never thought a car wreck that did damage to my elbow
would stop me from walking an entire year later. I never thought you could get a disease from a car wreck.
I never thought I would have to depend on anyone else
to get me through tough times in my life.
I never thought I would face an uncertain future
without the ability to answer the tough questions.
I am by nature a very opinionated, strong minded, determined and focused individual. Having my life turned upside down by an unforeseen event is not in anyone’s plans of course, but, the thought of it was always something I thought I knew exactly how I’d handle as a ‘strong and independent woman’. Little did I know that my ultimate undoing would also be the one thing that allowed me to become more whole as a person.
Looking back on last year’s thoughts on how this disease impacted my life over the first year of learning to deal with it, I was already at a place of seeing the blessings that came with the pain and the horror. I make it a priority to find good in all things or at least as many as possible. I don’t believe things are one way or another in life. I believe that things are the way we interpret them to be. Our perception and reactions to life determine what we take from each instance and whether or not we count it a blessing or a curse or in this case admit it is equal parts of each.
There are still times where I try to convince myself that this is all a bad mistake and that I’m really ok (when I feel good it’s easier to lie to myself) and the pain was just a figment of my imagination trumped up by my brain somehow. I still have those moments or days of denial where I really do want to refuse to believe that I will have to deal with this for the rest of my life. There are also days where I think I have it under control and manageable and that I can handle it. I fool myself into thinking that I am the one in control, not the disease.
I am learning that there is more to it than drawing hard lines, coming up with definitive answers or even being able to list symptoms. Everything is so fluid and ever changing with CRPS. Life equilibrium. Balance has never been so important and never meant so much to me as it does now. I’m learning to live in a state of seeking my own level the same way that water does. When my pain levels are up, my activity levels go down and vice versa. When I am frustrated with my limitations, I find ways to realize the gains that they have brought me in my emotional life. My physical life has forced my emotional life to do some very large sacrificing….and what I thought was me becoming weaker is turning out to be me learning to become stronger.
You see….. when life begins to strip you down to your core and bend and stretch you to your breaking point, you have to adjust and adapt and learn new methods. There is more to it than that though. You can get caught in the label, in the diagnosis, in the symptoms, in the daily rigor of the battle and forget that you have a life to live beyond the disease. You can forget to choose to take in the beauty around you, to find new strengths, new outlets, new hobbies, new friends, new resources, new paths to use your talents on. It is so easy to get stuck in the mud of the issues that come with CRPS/RSD….but we who have this disease have to learn to rise above and be water and flow and seek our own level. We have to learn to live differently. Life may never look the same, but that doesn’t mean it cannot be beautiful, or full of adventures. It just means we have to change our definitions and more than that we have to push ourselves to make new expectations, focus our perceptions and define our interpretations in a way that helps us grow and find positive experiences in the struggles that we face. If we don’t adapt we become stuck in that mud and the weight makes us feel like there is too much work involved in moving forward we become depressed and despondent because our expectations are still tied to our old life and our old abilities. I’m learning now to flow, to adapt, to change my focus away from what life was, what I used to think, expect, want, etc so that I can still have dreams, still have goals, still accomplish things. Now I do so as part of a team, with the help of friends, family and loved ones. The disease brings its own challenges, but if we accept our lives are not determined by external circumstances, but rather by our mental approach, we can and we will triumph despite the challenges, no matter what they are. Rise to the top, find balance, seek your own level and don’t stay stuck in the mud. Make the choice to look for a new perspective.
I never look forward to the pains I know the next year might bring, but I do actually anticipate with high hopes the new horizons and the new vantage points that come on the other side of the valleys. I plan to enjoy my journey no matter what, for as long as possible!!!
I am so honored to have Rikki as a guest writer for us 2 years running! I have revisited her post from last year “Broken Things can be Fixed” several times throughout this past year and it still chokes me up. She has so much wisdom, insight and vigor, it is easy to forget she is in her second year of Complex Regional Pain Syndrome. Thank you to Rikki for lending us your voice today and allowing us to share your end-of-year reflections on your ever-inspiring journey. Rikki has many hobbies including traveling with her family, uplifting others around her, and she has a passion for Celtic Mythology. Check out her fascinating Facebook page: Celtic Lore and Mythology.
To see more RSD/CRPS articles, artwork, and poetry, visit the Categories menu for “RSD/CRPS” or click here.
I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net
Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.
But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.
Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.
But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.
Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.
Find her books here available on BarnesandNoble
Since my blogging experiment began this past August, I have met some fascinating individuals who have injected so much color and warmth into my little world…even without needles. I just want to take a quick sec to say, Hey beautiful (or Hello there, handsome sir, if you are a gentleman)! Thank you for taking the time out to read my mind splatter. Thank you for leaving your own bits and pieces of brain in the comments section. You’ll never know how much your thoughtful words propel more ideas, more writing, and how you breathe rays of excitement into my life. In such a short time, we have started building friendships or we are getting to know one another through our mutual blogs. When I haven’t seen you around for a while, I get concerned you might not be doing well, or have become lost, wandering around a very, very large shopping mall somewhere (it can happen). You have left a mark my heart (in a good way) and I just want to make sure you know I think you are the bees knees, gorgeous (or good show, jolly old chap)!
Three bloggers who are not only a few of my favorites for their wonderfully honest and insightful writing, but I’m also extremely thankful for their support: Finding out Fibro, Life in Slow Motion, and Escharae inspired this post. As we do here every month, I’d like to give a shout out to few fantastical, fabulicious blogs that I’ve fallen for more recently, and I hope you will as well.
Creating Through the Pain: Kathleen is working on finishing up her first book while she blogs about her family, her faith, and her personal experiences managing CRPS/RSD. Kathleen has a creative whimsical touch to her writing which I always find heartwarming.
The Sick Diva: is a brand new blogger who brings a splash of sass and a big dose of wisdom right out of the blogging gate! She mixes original poetry with posts about her life adapting to Chronic Pain and all of its new challenges.
In the Blink of an Eye: Author, Mary Jane Gonzales is well known in the chronic pain community for her intimate and inspirational books, but she also has a very informative blog to help those with RSD/CRPS, along with their caretakers. She is active in the Facebook community where she shares her freshly-written pieces almost every day. She is a gem!
Mum C. Writes: Is a fantastic poetry page brimming with powerful verse daily. Mum C. writes about love, humanity, pain, hope and everything in between. She is full of passion for African issues and is so generous with her talent.
Sublime Mercies: Shares her witty perspectives on walking aids and being disabled while raising awareness for disability issues, PTSD and child abuse. She always shares bright colorful images and celebrates vintage fashion and femininity.
Thank you to all of the readers who have followed and whose comments encourage, and thank you to the amazing guest writers and fantastic featured artists whose work has appeared here thus far. I’m so uplifted by the creativity and hope messages I’ve seen surrounding this page. This has been a lovely fall of creativity, new discoveries and making new friends in you lovely peeps. I look forward to a fabulous new year of writing along with you!
If you would like to stalk me or share your story, you can find me on Twitter @aBodyofHope or email me at firstname.lastname@example.org.
Father, this is private.
I could never tell a soul
Of my heart’s fragmentation
And the need to be made whole;
How the theft of affirmation
And the absence of support
Is transmitted to my mind
As a negative report,
How rejection from the people
That were closest in my life
Could so deeply pierce my heart
And create a lot of strife.
Were it not for words of value
That are spoken in your book
That translate into the blessing
If through spirit eyes I look,
Could I even go on living
With a spirit that’s been crushed,
And the cries within my heart
That despair has served to hush.
Were it not for living presence
Of your Spirit within me,
Through your grace and lovingkindness,
Could I ‘ere begin to see
That I’m loved beyond all measure
And although I can’t conceive
There’s a plan and greater purpose
For the trials, I believe.
I believe because you’ve told me
And I know you cannot lie,
And therein lies my sustenance,
My comfort and my high.
-by Mary Jane Gonzales
Inspiration Scripture: “Let us hold fast to the profession of our faith without wavering (for He is faithful who promised).” HEBREWS 10:23 (TMB)
Guest Contributor, Mary Jane Gonzales began writing poetry, music, and crafting over 20 years ago when her harrowing journey with a chronic neuropathic pain disease, Complex Regional Pain Syndrome / RSD began. Now, she is a published author of several books, pillar in the chronic pain community, and continues to share her story, struggles, and faith journey to shine a light to help others. Her book In the Blink of an Eye is quite popular in the pain community, and her newest book, Poetic Devotions for those in Pain is a personal favorite of mine. Today, I am so honored to feature Mary Jane Gonzales’s “Fragmentation” from her heartfelt book of poetry.
Find her bio and book collection at: PoetMaryJaneGonzales.tateauthor.com
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. It reaches out and it latches on to the minds and hearts of those I love. It shatters dreams, it breaks hearts, it damages everything it touches.
Broken things can be fixed. Sometimes. They don’t always look the same when they are put back together. Re-purposing, taking something of one use and redefining its use. That is now the story of my life. I won’t accept being useless. I am not. I have purpose, I have life and use left in me. It won’t look the same. The clay has to be reshaped. The design is no longer of my making. I am now at the mercy. Mercy. Grace given when it isn’t earned. Help, I need help. I have never needed help in my life. Now, I need help. I need to find a way through the darkness.
Independent. I have always been a wandering gypsy soul. Stubborn. It’s in my genes. The hardest thing to navigate has been the stripping down of all of that. I can’t just go, can’t just do, can’t just be “me.” Life has changed. I thought it was for the worse. But, along with being all that I am, I am one thing indefinitely. I am the eternal Panglossian! I look for hope and beauty in the worst of situations. And I have found some real treasures. Most of all, the support and love of those closest to me. I am actually learning, learning that I can let others love me. Who knew. I thought I was supposed to do all the work, be on top of handling everything, making sure it all runs smooth and without any hassle to those I love. I have never been able to delegate, I don’t trust any one else to do the job without being bothered by doing it, so I do as much of all of it as I can. No, I am not an overachiever lol, not at all. I just want everything to be perfect! Well, guess what? It isn’t, and I’m not. Not perfect and NOT independent. I now am forced to rely on Mister to love me enough to help me. Guess what, strangely enough, he does! I would NOT have known the depth of his love, or the truth of it without this disease. It has brought me faith in another human, in humanity. It has brought me to a humble place where I can learn compassion, a healthy place to serve from.
I am at the beginning of my journey. It’s been just over a year now. There will be many stories on the way. There will be a lot of pain. There will be endless tears and screams. There will be doubts and fears. I will think many unthinkable thoughts. When it threatens to overwhelm me, I will adjust, take inventory, and recalculate and make new goals. I will find the beauty in the ashes, I will rise up on wings as eagles, I will be more than a conqueror and I will be loved. This is the gift that I am left with facing the beast CRPS. I am given the chance to live in faith, to find hope, to be a light, and to receive love and mercy. It does have a glorious side and a beautiful ending. No matter what. I live in a broken body and a broken spirit. Broken things can be rebuilt for a new purpose and a new glory and a new day. I am not a broken person, I am just being redesigned.
~Wait for it…..it will be amazing!!!
xo ~Rikki Lin
Today’s guestblogger, Rikki Lin is only one year into her journey with chronic pain and she is such an inspiration already. She has started to rebuild a new chronic life by upstarting an oilfield jobs help page and she creates information posters for the CRPS community among other projects geared toward helping people. I’m very grateful she has given a piece of her beautiful self to us today.
My favorite place to wish to be as a child was always Disneyland. My father would promise us trips to the Magic Kingdom, but we were never able to go. When I was a senior in high school, I had an opportunity to see Micky’s House during Grad Night. It was surreal. Twinkly, sparkly fantasy-packed happiness all around. I was mesmerized… and alone, but I didn’t care. I made the most of it. I thought about that night fondly as I aged and considered Disneyland to be the magical place everyone else knew it to be.
Guest Entry written by Jennifer Anderson
Fast forward 22 years and there I am laying on the couch with one leg attached to a machine that makes circulation more appealing to my body via electric shock and the other kicking pill bottles around. I had a bad surgery that led to Septicemia. An infection had eaten away at my foot to the bone and there had been talk of amputation. That was all behind me now, and the final outcome was a bone that wouldn’t heal and a diagnosis of Complex Regional Pain Syndrome (RSD). My world crumbled. My stars went out. My light was just a flicker. I was destroyed. Disseminated. The grief of never walking on my own again and the burning pain that never eased up was just way too much for me to deal with. I spiraled into a deep depression. Weeks passed and I just got worse. I would sob from the pain and just sort of check out when I was being talked to. I was quietly dying inside. My husband saw this and made a plan to attack that CRPS right in its ear. He packed me up, put my wheels in the car and started driving.
This little adventure was no fun for me and I let him know it. Where could we be going that required me to be trapped in this moving nightmare? Why? I sobbed. Why? I fell asleep. Too much pain and too much moving just knocked me out. When I woke up I was at a hotel. I remember thinking what a pretty hotel this was. My husband wheeled me across a woodsy looking parking lot right up to what I can only describe as paradise. It was the Grand Californian Hotel in Anaheim. I knew right then where I was. For those few moments I can honestly say that I felt no pain. My senses were all so alive and my heart was so full I just burst into tears. I do that so much, more often now from being happy than anything else, but those were my first happy tears in a very long time. Maybe even my very first ever. Disneyland became my secret cure. My big distraction. My safe place. I had fallen upon Valhalla and there were mouse ears inside.
That six hour car ride was the beginning of what I now consider my new lifestyle. We drove 375 miles each way every other weekend for a year. With each visit I became stronger, more confident in walking and best of all I grew so much closer to this man who saw me suffering and did what he thought would help me. It’s really hard to be unhappy at the happiest place on earth. You’ve got to want to be miserable with so much magic all around. Every child I rolled by who was also in a chair, every parent pushing them and every injured person who struggled to keep a smile on while suffering endless steps of pain just put me in awe at my own sadness. How could I sit here and cry about myself when there are children visiting today that might not be here tomorrow? I found myself asking this question over and over. My answer came slowly after every visit. This won’t beat me. I will walk again. I’m not dying; life is just different. By the end of my first year of Disney rehabilitation, I was able to walk without a chair, a cane or even a hand to lean on.
I can no longer work. I know I could probably craft away at home and make something but I’ve been there and I’ve done that, and frankly it just reminds me of misery and recovery and nothing of living. I polled my family and friends about what they would do and where they would go if they could do anything or go anywhere. I had many responses. Some ideas were to travel away to exotic islands or visit famous landmarks like the Grand Canyon or the Statue of Liberty. Others included long flights to foreign countries or train rides up the California coast. My husband said he would travel the world and take me away to every Disneyland because that’s where I am the freest and happiest Jen he’s ever seen. Together we hatched a plan of all plans to make this magic last. I was alive again and I had big plans.
Living with CRPS is literally a living nightmare. I refused to take any of the medications I’ve been prescribed because they make me comatose, lethargic and extremely forgetful. I choose rather to treat my symptoms with nutrition and exercise and NO it’s not a cure but it makes my life manageable. I cling to my routine because I know that if I stray I will suffer. Since the sepsis and initial diagnosis it’s moved up into my right arm and hand in addition to my right foot and leg. I take copious amounts of vitamin C, D, B, chlorophyll, I juice and I removed sugar and dairy from my diet. These steps keep me in low pain rather than the zinger flare ups I get when I ignore the warning signs. I find myself planning to run away constantly because I know there’s a Disneyland visit on the other end of this crazy train.
Since that first car ride three years ago I’ve grown stronger and wiser about my health and my pain management. I fly but with many precautions and a very sound plan of attack should I have a flare up. I don’t let my disease stop me. So far I’ve visited Euro Disney just outside of Paris twice. Once in the Spring and once in the fall. I’ve explored Tokyo Disney during cherry blossom season in the spring and most recently for my birthday in October. We traveled to Walt Disney World for Christmas after taking a holiday cruise to the Caribbean last year. I now know that Hong Kong Disney is the smallest in the world but they have some of the coolest attractions on the planet. My favorite is a triple tie between Anaheim, Tokyo and Paris. Nothing can compare to Disney California Adventure, Disney Sea in Japan or being so close to Paris at Euro Disney. I love Epcot because it’s the quick way around the world and the rest of Disney World is awesome but just way too large for me. I loved the Hong Kong version of The Haunted Mansion called Mystic Manor. They also have a Toy Story Land that made you feel like you were just another toy in the box. Hong Kong Disneyland is super cute but so small it can be thoroughly explored in just one afternoon.
Now, no matter where in the world I am, I know that somewhere there’s a Main Street U.S.A. waiting for me to skip down; stuck in this body of hope, at the happiest place on earth.
Our Guest Blogger, Jennifer Anderson has collected over 30,000 photos from her travels around the world with her husband. Jennifer graciously shares her photos and escapades with her friends in pain to lift their spirits. She has a special interest in healthy eating, style and has a fresh perspective on life. Thank you for your magical contribution to CRPS/RSD Awareness Month, Jennifer!
This post was featured on The Spoonie Daily E-Magazine!
A nightmare, a gauntlet of choices… of invasive procedures. Pills, so many pills. The looming threat of addiction, as I searched to end what seemed to be endless suffering. RSD: a constant adversary.
Written by Marcie Ann, Guest Contributor.
I asked, where are the heroes and the heroines of this nightmare I’m trapped in? Who will save me from this monster?
Abandonment: As friends, family, and the medical community tire of my seemingly infinite needs. My very existence is a constant reminder for those who love me and those sworn to heal. They too are helpless.
It’s the never ending story; it’s the song that never ends.
And then, in the heart of a man named Giuseppe lays a seed and the courage to nurture it, to fight this relentless beast. And so the heroes and the heroines enter what seems to be a losing battle for for the victims, the characters caught in the RSD nightmare.
Calmare Therapy, and those with the courage, compassion and integrity to stand beside us. And those with the determination to end our suffering enter the storyline, rewriting our never ending story, splashing its pages with hope for a life free from pain and suffering.
My innocence and naivety lost, with overwhelming thoughts of suicide, I set out on what I believed to be my last and final voyage to live.
Standing in a small clinic all the way across the country, 3,000 miles from home. Instead of being faced with the anticipated judgmental glances of typical doctor’s offices, I am greeted with hopeful smiles.
Now, I sit across the desk from Dr. Stephen D’Amato who explains to my skeptical mind the wonders and success of “Scramble Therapy” in fighting RSD. As he spoke, it came to me: HE CAN SEE ME. Although sitting across from him appears to be a healthy woman, this hero knows my enemy. The internal implosion, the woman trapped in the burning inferno. A spark, a small ember of belief ignites in my numb heart.
I walked into the room to begin this Calmare journey. In the corner stands a seemingly insignificant machine. In this machine and in the hands of my hero and heroine, I place my last hope.
This is that moment.
And so nurse Brandi, Dr. D’Amato and me, Marcie Ann with Giuseppe’s machine set the pen to the parchment, charging into the story together. And after 9 treatments, we win.
Calmare isn’t a cure; RSD is a lifetime foe. But because of one man’s dream, and some courageous men and women, I no longer walk alone. I no longer walk as a helpless victim. With Calmare, my hope is alive.
Marcie Ann, our guest contributor is involved in the online RSD/CRPS community where she has been an educational advocate for Calmare Therapy ever since her first treatment. Many individuals have received pain relief after hearing Marcie’s story. Marcie and others are advocating to make Calmare more widely available. I am so grateful to include Marcie Ann’s powerful story on my blog.