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
There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me.
This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you!
I choose, I choose, I choose.
My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
Sign here X _________________
Please support Rare Disease Day on February 29th. www.rarediseaseday.us
The 15th of October, a very beloved, beautiful soul and long-time health activist, Mary LaBree passed away due to complications from RSD/CRPS. Here, one of her best friends, Mary Jane Gonzales shares a heartfelt poem with us along with the late Mary LaBree’s story. This was originally posted on the RSD/CRPS awareness Facebook page: In the Blink of an Eye.
By Poet/Author, Mary Jane Gonzales:
“With this being RSD/CRPS Awareness Month, I’d like to begin the month by acknowledging the work of Mary LaBree who is no longer with us. Mary shared a small part of her story with us in September for Chronic Pain Awareness, but was reserving the bulk of her story for an impending book. For those of you who missed her post back in September, you can read it below. Though it offers just a glimpse at her story, I would like to highlight some of her accomplishments that I know of. Her and her daughter’s RSD Support Group was the second support group in the country, and the first to get a state proclamation (back in 1990). She founded the New England RSD Coalition, whose function was to serve and educate: through support, seminars and fund raising. She held teaching seminars with well known doctors; collaborating with them over many years. She was a strong advocate for RSD awareness, and a key figure in the RSD community. Even recently, she was asked to speak at a conference, but had to decline for health reasons.
Before I repeat her post from September, I’d like to share a poem I wrote for her a few months ago for her intended book.
A HELPER AND ADVOCATE
A soldier, a warrior,
A patient with tears,
A helper and advocate
For so many years.
Reaching and touching
All that she could,
To help them endure
What no one should.
Searching for answers,
Seeking a cure,
For her and her family,
And all who suffer
This dreaded disease
Her reason for working
Poem Copyright Mary Jane Gonzales“
My Chronic Pain Story
by Mary LaBree
“I became aware of RSD in the mid 80’s when I went with my daughter to the pain clinic where she had been diagnosed with RSD. Then, about a year or so later, when I got hurt and fractured my spine, my daughter said she thought I had RSD also. So she took me to the same clinic, to see her doctor, and I, too, was diagnosed with RSD.
After that, I went into treatment and it took four years for me to get better. Along with Post Galvanic Stimulation, which helped me a lot, some other treatments I’ve had include:
Alphalipoic Acid (IV)
Radio Frequency Ablation
Though all the treatments have helped, none have been long lasting. As you all know, RSD (Reflex Sympathetic Dystrophy), now known as CRPS (Complex Regional Pain Syndrome) has periods of worsening, be it flares or spreads. I was fifty years old when I got RSD. I am now seventy eight. In those twenty eight years with RSD/CRPS, I have alternated between walking unassisted, walking with a walker, and using a powerchair.
In the late 1980’s, my daughter and I started “RSD Support Group”. We were the 2nd support group in the country, and the 1st to get a state proclamation (back in 1990). It was the Massachusetts State Proclamation and we’ve gotten one every year since. We chose the color red and the month of July because July is considered the Freedom Month.
Later, my daughter moved out of state and she passed the support group onto me alone. In 1997, a colleague who came up for the July “Proclamation Awards Ceremony” approached me to form an organization, which was named the New England RSD Coalition. For all these years, the function of the coalition has been to serve and educate; through support, seminars and fund raising.
I have learned much over the years with Chronic Illness. I have learned to research all that I can about this disease which has affected eight people in my family…which was devastating and heart wrenching. I have learned to advocate for both awareness and patients. I have learned things that I can do to help myself beyond medical treatments, such as:
sitting in the sun
a positive spirit
Helping and doing for others is my “secret” for living with RSD, or just plain living!”
Mary LaBree left a lasting imprint on the chronic pain and RSD/CRPS community. She is one of the first chronic pain health activists. Without her dedication in clearing a path, so many of us would still be suffering in the dark. Mary LaBree’s commitment to her cause shows that life does not end with chronic illness; she made her battle her life’s work. Thank you, Mary LaBree.
**Also read In Memory of Mary LaBree- An Original RSD Advocate from RSDAdvisory, a personal account of a long and loving friendship with Mary.
Since Mary’s passing on October 15th, very sadly, more RSD/CRPS angels have been lost. We honor them all by raising awareness about the seriousness of this disease. Our hearts and prayers go out to their friends and families.
For a non-fatal disease, far too many don’t survive.
On August 14th, 2015, the FDA approved children as young as 11 years old for the drug Oxycontin. There is public outrage and disbelief at the thought of children so young taking such powerful opioids in the midst of the current “prescription drug crisis.” Although there is a great deal of public awareness for prescription drug addiction, it’s important we also understand who this medication is intended for.
I found the article about the new FDA approval on the timeline of a friend who is passionate about raising awareness for addiction issues. She and her friends view this news very differently than I do because of our individual experiences with opioid medications. On one end, prescription pain medications can be abused, cause addiction, ruin lives, and even cause fatal overdose, tragically. In my experience as a chronic pain survivor, I view pain medications like Oxycontin as a tool for temporarily relieving the suffering of a person in severe ongoing pain, the improvement of quality of life, and in the worst cases, prescription pain management can be life-saving.
The drug Oxycontin or “Oxy” is widely known for its addictive properties and high performance on the black market. The drug was reformulated 5 years ago to make it more difficult for individuals abusing it to get a “fast high,” though its reputation has not diminished.
This is Lucie. She has Superior Mensentric Arterial Syndrome and Complex Regional Pain Syndrome. She was active and healthy until the excruciating pain took over her body. Now, she is in pain all day, every day and night, begging her mother to take away her pain. [How you can help Lucie]
This is K. Chandler Rosemont’s experience in physical therapy. She has CRPS/RSD, or the childhood name RND. Because the nerves are so hypersensitive in the disease, even the slightest touch and movements are unspeakably painful.
To those reading this who have loved ones who suffer from addiction as I do, you may be thinking that making pain medication more widely available is the worst thing to do in this prescription drug climate. Actually, pain medications are becoming harder and harder for doctors to prescribe. Every year, the regulations tighten around doctors prescribing month to month opioid pain medications without refills, blood tests and urine samples are often required (state by state basis), there are strict patient contracts, etc. If a patient does not comply, they are terminated as a patient, and the black mark on their medical record follows them. That is protocol for pain management, and it causes pain patients to view their medications as seriously as they view their pain. (Read more in my article, Pain Pills: Chronic Pain Sufferers Speak)
In response to the growing public awareness of the problems surrounding prescription pain medication addiction, both chronic pain patients and doctors are under tighter regulations each year. However, since 2004, children diagnosed with chronic pain has increased by over 800%! So this approval by the FDA is certainly not unwarranted.
Personally, I believe the bigger problem lies with non-pain management doctors prescribing pain medication with a cavalier attitude. This past year, one of my relatives was prescribed a pain medication after she was seen for a sore throat. Dentists often prescribe a full month’s supply of strong pain medication before knowing whether or not the patient will be able to tolerate their minor after-procedure pain. Studies show that less than 3% of chronic pain and cancer pain patients are actually becoming addicted to their pain medication; chronic pain patients can typically stop taking the medication on their own. However, when pain medication is prescribed for acute, healing injuries without concern of addiction history, doctors don’t consider if the short-term pain could be tolerated without the medication, or if there is an alternative to manage the pain, the average person is put at greater risk for becoming addicted.
It is difficult to think of children suffering in excruciating, non-stop, pain every day, but this is a reality we cannot ignore. Complex Regional Pain Syndrome is a debilitating neurological pain disease that has deteriorating effects on muscle tissue, it shrinks bone, and changes the brain and nervous system to feel pain at an outrageous level. CRPS also causes the skin around the “affected area” to turn purple, black, blue, causes swelling, changes skin temperature, and the skin can begin to deteriorate as well. It is considered more painful than amputation, childbirth, or cancer pain, and there are children living this nightmare every single day. Children suffer from a variety of neurological and muskuloskeletal pain conditions just like adults do. Children are treated for disabling chronic migraines, Childhood Fibromyalgia, and tragically, children are treated for cancer pain.
Oxycontin has been approved by the FDA for pediatric prescription for severe cases of chronic pain and end of life care in children ages 11 to 16. Before it can be prescribed on a regular basis, there is a protocol to make sure the child can tolerate the medication safely. Interestingly, there is only one other opioid pain medication approved for pediatric pain management- the Fentanyl Pain Patch. If you have ever been prescribed any kind of medication to help manage a problem with your own health, you know that it can require trying a few different types of similar medications before you and your doctor find one that helps you without causing intolerable side effects. Until now, children suffering from debilitating chronic pain had only one FDA-approved option to try for pain medication.
There is still the question of theft. Pain medication is often stolen by relatives or house guests who struggle with addiction. I have heard many stories of spouses and caregivers who skim a few pain pills each month when they pick up at the pharmacy. One fellow pain patient told me she kept her medications in a heavy locked safe that was bolted down, but a family member still managed to steal her safe and medications inside. This is a real issue that should be part of the awareness of opioid pain medication addiction along with the patient’s responsibility to protect his or her medications. However, just because there is a public addiction issue does not mean individuals in pain should be deprived of proper care. One problem does not supersede the other. Would you tell a child screaming and writhing in pain every day without sleep, unable to go to school or play with her friends that she should be denied some relief?
I personally think that a child suffering should have access to pain medications while they seek out other methods of treatments. We know that children respond better to alternative treatments than adults do; however, that doesn’t mean they should have to wait months or years while trying treatments and procedures to have improved quality of life, nor should they have to suffer for years until they are “old enough” to receive proper pain management.
I am interested in your thoughts. Please share them below in the comments section.
I’ve started with a home health aid for the first time after considering it for a while now. Many people have asked me how it has been to have a home health care professional, so I will share a little bit about what the past two weeks with a professional caregiver have been like for me.
Nearly all of my doctors have suggested I hire professional help over the past four years of being bed bound from chronic illness, but both you and your family must be comfortable with that arrangement. Also, with my hypersensitivity to sound, light and worsening pain with speaking and movement, it might not have been conducive for minimizing pain when these problems were at their worst. Now that I can tolerate visitors at times and I am doing better with short, quiet conversations, I was curious to see how I would do with a professional aid. Also, I have needed more help recently, so I am very grateful to have an aid to assist me.
I have scheduled the aid to come in short shifts and she allows me to take lots of breaks, though I still end up sleeping for the rest of the day. I may start making lists for her the day before she comes so I don’t wear myself out or in case I wake up feeling too bad to communicate. I am still getting used to having someone who isn’t a loved one do things for me, but so far she has helped with things that I might not have asked for otherwise.
I was pleasantly surprised that my new caregiver walked into my room on her first day knowing all of my health concerns, special needs and requests. Even though I had been evaluated by a nurse prior to making arrangements, I assumed it would be a bumpy start- it wasn’t. She is certainly a professional! She is so sweet, kind, gentle, and very attentive. I liked her from the moment I saw her, and my family also likes her, which I was very happy to hear.
A professional caregiver can prepare meals, do light housework, laundry, help with bathing, dressing, run errands for you, take you to your doctor appointments, make phone calls on your behalf, or help you with special health needs you have arranged with them. If you are more mobile, they might act as a companion, going different places with you to make sure you are comfortable and have your special health concerns cared for.
Because this is a professional caregiver, I feel I have more independence and I am making more of my own choices again. For anyone who is being cared for by family or a spouse, you understand how important that is for your sense of self. With family members, my chronic illness issues and episodes can be distressing for them at times, and while I am so grateful for their willingness to help me, I hope that having an aid to help will also give them a bit of a break.
On the first day she arrived, she organized my room in a way that would suit me better, and moved a few things around for me (she is as quiet as a mouse). On the second day, she helped me with a sponge bath, put lotion on, and helped me change my clothes. Earlier today, she gave me a bath for the first time, changed my sheets and cleaned up my room. I was very anxious about the bath since that is one of the most difficult things I have to do apart from going the doctor, however she was such a great help. Aside from my usual after-bath fainting spell (which she handled like a pro), we both managed pretty well and got me clean! I have a lot more confidence going forward after today, and I feel she and I can conquer more difficult tasks together. The next time she comes, I’ve arranged for her to ride along with me and my father to my doctor’s appointment so she can see how he transports me from the bed to the car, then from the car into the Dr’s office- just in case she ever needs to take me anywhere.
I have big plans to get much stronger this year, so I’m hoping my new caregiver and I will be doing more and more things together. She is a lovely and compassionate woman, and I look forward to making her into a new friend!
She hasn’t slept for days. The pain in her leg reminds her of ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks. “When do these little guys ever take a lunch?” she wonders. They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, making her gasp for air. Now, her entire leg IS pain. It is no longer a leg. It is no longer HER leg. It belongs to a monster. To a disease she does not yet understand.
The limb is only pain and fire and crushing, sawing icicle bone. When she closes her eyes, she cannot picture what the leg looks like. She can only see purple and ice blue with white. Like a force-field that radiates around the limb, the colors have replaced flesh.
She waits for the sun to rise for her doctor appointment. All night, she recalled her symptoms again and again. She can’t leave anything out this time. He has to understand- I have to make him realize what is happening to me. I cannot live like this. I won’t. I can’t do it. He has to help me. I will make him understand.
Five hours later, back in her bed, she is barely conscious now. Sleep still will not come, but her mind is groggy from pain. Her heart races, body shakes, face tingles and room spins; all that she registers is pain. She feels herself floating away. All but for the leg. It holds her captive. She can’t keep her eyes open. Slow tears stream down her face. Flashes of the past few appointments cut through the fog.
Orthopedic: “I’m sorry to tell you, Complex Regional Pain Syndrome is the most painful condition I’ve ever seen. You are so young…”
Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try…Stop crying!”
Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”
General Practitioner: “Pain medication is just really hard to prescribe these days. How about some more extra strength prescription Advil?”
Two nights later, she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, 3x the size of the other, and his beautiful, 20-year-old love rolling around in her bed, moaning, barely able to form words. Even in her state, the doctors and nurses look at her with suspicion. “She has CRPS,” says the fiancé with an obviousness in his voice, assuming they will then finally understand. No, CRPS is a condition the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face. “She can see her doctor for pain medication,” he says, never looking at the girl’s face.
From across the Emergency Room, a nurse rushes over and pulls the doctor aside. After their private discussion, that angel nurse is lead on the team and the shrieking girl gets pain medication immediately. “Don’t stick her with any needles and keep away from this girl’s leg, everyone!” directs the angel nurse. She tapes a sign to the bed saying “NO STICKS. DON’T TOUCH LEGS.” After the girl had relaxed some, the doctor sends her home with a prescription for pain medication and anti-inflammatories.
She finally had some hope. The medication wasn’t helping the pain very much, but she did get a few hours of sleep, finally. She felt more like herself than she had all week. Knowing there was a medical professional out there who knew about her condition and cared enough to try to help her…was like a window just opened and she could breathe again. Maybe in time she would find a doctor like that nurse. Maybe if someone could help her…maybe she could try to do this.
Then, her mom stormed into her room. “Your father and I have decided we want you out by tomorrow.” Wait…what? What’s going on, mom? “We know you have been going around trying to get drugs from doctors. After your little trip to the emergency room last night, we know you got a big bottle of pills and we want you out. We won’t have an addict living in our home.”
This is inspired by a true story, but “The Girl” is un-named because her story is shared by too many who face this disease Complex Regional Pain Syndrome (RSD) and other types of severe chronic pain conditions. Chronic Pain does not make you an addict. Taking prescribed medications that allow you to function and survive is not the same as addiction. If you love someone with CRPS/RSD or a severe chronic pain disorder, please do some research on their behalf and understand that the media does not portray pain medication appropriately, from the perspective of chronic, terminal illness sufferers or from doctors who manage chronic pain disorders.
For more information, read Pain Pills: Chronic Pain Sufferers Speak
~Fire Brick Road~
Down this yellow brick road of fire and pain
There are things that you’ll learn and there’s knowledge you’ll gain.
You learn people prefer when you’re funny instead
Of telling the truth about how bad things get.
You’ll figure it out that folks get annoyed
When you tell them you’re hurting when they’re feeling joy.
If someone asks about your health facts,
You must pair each truth with a blessing you have.
Otherwise, they will think that you are pathetic,
Even though they may really seem sympathetic.
Make sure to be cautious about each complaint,
You’re “sick” now so people expect you to act like a saint!
A bit more advice as you walk the path:
You’ll subtract a few friends, so learn some quick math.
You’re just not fun like they remember,
But hang on to the ones who will love you forever.
If you are grateful, then you will do better
The things that are negative really can fester.
If someone else tries to meet a need,
It’s best to say “thanks!” and learn to receive.
This yellow brick road of fire and ice
Has more stuff like: Doctors, and money, and guilt… OH MY!
But on this road you aren’t alone
God’s with you, and others who limp it in toe.
So when you are ready just reach on out,
Someone will be here; there’s always traffic on this route.
-by A Body of Hope
Thank you to Artist Andrea for allowing her awesome Yellow Brick Road painting to be featured. Please go buy one of her unique original pieces from Etsy. Many of her paintings have the spirit of Frida Kahlo. Check them out!
In the last 2 years I have learned more about digital art and adapting my creativity to technologies I can participate in with my new health challenges. It’s unfortunate that many artists still don’t recognize digital art forms as “real art.” If you are one of those artists, I encourage you to reconsider by taking the time to evaluate mixed media further. I’ve always loved working with my hands and being artistic, but when my CRPS pain condition went from my leg to also causing problems with my head and brain, ongoing migraine, intense eye pain, sensitivity to light, passing out disorder, heart, etc., it has kept me from participating in the arts like I used to. If you are an artist or crafter, you may understand the need to move around while doing your work- this I can no longer do.
I belong to a group on facebook called Chronically Inspired that encourages people with different types of disabilities and limitations to use art as a coping tool and provides a supportive sharing community. The group has helped motivate me a great deal; I feel the projects themselves have been therapeutic in my mood and overall recovery. Because of this group, I feel more free to share my work and I’m excited to show this piece to you, kind readers!
I created this project for Nervember/ Complex Regional Pain Syndrome Awareness Month. It was inspired by this awesome piece of art by Rosalie Gascoigne called “Party Piece” from 1988 (as seen below). She cut and pieced together reflective road signs- I loved the idea.
To begin my project, I created an InfoGraphic (a digital image conveying information) that both met the needs for my project as well as expressed information about CRPS/RSD for Awareness. Surprisingly, my infographic as seen below was shared and displayed by many people throughout November even though it was only created to be cut up. I used Picmonkey.com for the first time to create this poster.
Lastly, the most fun part, was cutting up the above poster and piecing it back together. (I used both Picmonkey.com and Powerpoint.) I knew it would be a tedious project, but I didn’t realize it would be so cathartic. I was cutting into pieces a poster I had spent time making look visually appealing- now it was a mess in pieces all over my computer screen and I had no idea how to reassemble it. The assemblage took so much longer than the above poster, it’s much less visually appealing and makes a lot less sense- yet the effort was so much greater. It reminded me of living with chronic illness.
RSD/ CRPS, and chronic illness cuts us into pieces, too. We have to rebuild our lives and figure it out as we go. Hopefully, we make sense of it along the way. It may not look pretty or make sense to others, but that’s ok. It probably won’t look the same as before, but we can make something new and special once again. I hope this piece is a reminder of how far you have come in making a way on your own fractured journey.
My favorite part of the finished piece is that new words and meanings emerged- if you look closely, you may find some new meanings of your own within the mess. Enjoy looking!
Thank you for allowing me to share my work with you. My 2 posters I created are free to be shared or Pinned.
This poem expresses the writer’s longing to help others in the midst of ongoing pain- that IS a gift! This piece really touches my heart.
This is a BRAND NEW blog. I hope you will check out some of her posts.
I asked myself what could I possibly give?
In a life that had become so difficult to live
For often my body is so wracked with pain
And the slightest movement is constant strain
With limbs on fire, but cold as ice
There was nothing about RSD even close to nice
Pain much worse than giving birth to a child
Yet strong enough to drive a weaker soul wild
Wondering how to make a difference in this life?
In a world of poverty, war, and strife
It seemed an angel whispered in my ear
The words spoken were tender and clear
You have been given a very special gift
Not a finger will you ever have to lift
Nor will you have to be on bended knee
It’s the needs of others, I want you to see
From your bed I want you to pray
Petition the Lord…
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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!