In Her Skin
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
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Posted on December 11, 2014, in Chronic Pain, Fiction, RSD/CRPS and tagged addiction, awareness, Chronic Illness, chronic migraine, Chronic pain, chronic pain and addiction, Chronic pain awareness, chronic pain management, Complex Regional Pain Syndrome, Complex Regional Pain Syndrome Awareness month, crps, CRPS and addiction, fibromyalgia, Fiction, Fiction writing, Nervember, neuropathic pain, Pain medication for chronic pain, rsd, RSD and addiction, RSD/CRPS, small fiber neuropathy, Spoonie, Trigeminal Neuralgia. Bookmark the permalink. 16 Comments.
You just blow my mind with posts like this one. Every time I start reading your work i know I’m in for something magic, but every time I’m still left reeling from the truth, strength, and the beauty of your own unique and precious wisdom.wisdom. Your writing here feels raw and jagged, but somehow your words dance so ethereal and full of light across a topic that badly needs both approaches.
I have so much love and deep respect for anyone of any age who suffers from this horrible pain and the stigma/ lack of awareness in the medical community. More of us have to keep speaking out, over and over until this media-supported anti-opioid witch hunt is toppled. Seriously spectacular post, love.
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Wow, Jessi, you don’t even know what your words of encouragement mean to me on this night. Sometimes people say things and they just don’t realize the impact they are having on someone else. You friend, speak to my heart today. I thank you for making me feel like my little words matter.
You were right, this came from a very raw place as it was inspired by a true story of a young woman I met in a support group. There are pieces of myself and pieces of her story, but it is a work of fiction- and my first attempt at it here.
People hear so many things about pain medication and what addiction means, but they rarely hear it from the side of the people who it is actually intended for. We are brushed off by everyone in this world and it is hurting us in our bodies, in our souls, economically, and in every way. We are still here. You matter. You matter to me!
Thank you Jessi for making me feel as though I matter in a world where is ok with letting us all disappear ❤
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The thing about you, my oh-so-gorgeous friend, is that your personality is never contained by the four walls of your room. Your body may be confined, but through your actions, your impact on the chronic pain community and on your local community as well leaves lasting ripples traveling through the lives of pain warriors and those who know them. Of course you matter! How could there ever be a world in which your unique perspective doesn’t?
Since I can’t speak for the rest of the world, I will at least say that to me, you are a phenomenally important and deeply inspirational part of my life. We have a nearly spiritual connection and understanding between us that time, levels of illness, and distance cannot ever break. I do not mean that to undermine your faith in the slightest, but more to illustrate that your soul and my soul know each other in a way that makes little agnostic me sure that life is not that random after all. My spirituality has always been found and reflected in other human beings, specifically in those moments when we can touch another person’s life without ever using our hands. Flaws, honest mistakes and authenticity are more beautiful than perfection, mastery, and ego. The people who think they’ve achieved or are entitled to the latter group are not people I care to know. I crave people like you who think that maybe their voice might not be loud enough, but they’re going to speak up anyway. Our voices are never meaningless, I promise, especially not when that voice contains the universe of truth that your post here does.
Your advocacy for compassionate care is like a giant hug that you’ve wrapped the entire chronic pain community in. I just wanted to let you know that I am hugging you back, and I truly appreciate all you have done for spoonies, as well as all that you have done for me. It’s one thing to tell someone to just hang on, just keep going, and another thing to throw out a rope to pull them up to the same point you’re at. I feel like when I met you, you threw me a rope, and you were the first person who did. I had zero faith in myself or others when we met, but for some reason your words were reaching right through the screen and knew just what to say.
Even though I was so used to running away from affection, from you I believed every word and it felt right to express that back, instead of being scared like usual. I may never know why it was important for me to get sick before I could find those who truly matter, before I could learn to fully accept myself and love others, but I wouldn’t trade my friendship with you for a cure. Not even tempted. I’d truly rather be in pain every day than have never met you. I never thought I would say that when I first got sick. But I can say it with absolute certainty four years into this battle.
So yes, you absolutely matter. When I was balancing on the brink of just giving up, your outstretched hand caught me before I could fall. How many others have you caught as they contemplated ending it? Please never doubt your power and your influence, no matter what your body is doing to you.
No matter what the rest of the world says about us. Society can shush us all they want, but they’ll never actually silence us. Thank you for being a leader in that movement.
Being loved by you, and being allowed to reciprocate that love with you, both make me so much happier and more grateful to be alive. Sharing the planet with rare creatures like yourself is a huge, sparkly, beautiful, magical blessing. In sickness or in health (hopefully in health, some day) I’m not ever okay with losing you now that I’ve found you. And I hope you can always remember (or remember to ask me so I can remind you) that you are doing work that matters more than any 9-5 job. You may not get paid for it, and that’s a shame, but you’re saving lives that have been abandoned by others. You’re saving lives that doctors can’t. I don’t even know what the price tag should be for that, but nothing I can offer in return would ever be enough. Which is why I’m going to keep trying as long as you let me. ❤ ❤ ❤
*big hugs* xoxoxo
Love you so very much, Mary. Words are never enough.
I don’t even know how to say “thank you” to your message or to you… I believe we do absolutely have a spiritual connection. And it’s proven in the moments I open your messages and the very words I needed to hear to rejuvenate my soul and uplift me are spoken through you.
This piece was my first “fiction” writing here inspired by a young woman in my support group, newly diagnosed. Her emotions and story reminded me so much of my own, and this is a combination of hers, mine, and some imagination, of course.
I wish we could get paid for loving on people and looking after people who need looking after. It’s supposed to be a given, and today’s world puts more value on things that take us away from that. “Society can shush us all they want but they’ll never actually silence us”<< should be your next poster!! We don't fade away just because we are sick, and because of the internet, we can scream as loud as everyone else!
If love were a paying job, you'd be in such high demand, and have an overflowing bank account, my beautiful loving friend.
Thank you for that love vaccine tonight. You don't know how much I needed your virtual hug. Hugs back, to infinity and beyond 🙂
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Everyone deserves to know how much they are needed, but you’re right, what was supposed to be a given, all the love and kindness, is much less valuable currency in the world we live in. But even though they may not be highly prized by everyone, they are a secret language for those of us who connect on a deeper level. Here’s a strange sort of confession, but my spirituality was mostly dead, sleeping, rotting. I hadn’t paid it any attention in years, I believed I just had to cut that part of me out and bury it somewhere and that would help me be free from the past. Somehow since I met you I can feel that corner of my soul starting to unfold and look around. Not only do I realize how wrong it is to try to destroy a part of yourself to escape the past, and how it does not work, but you taught me that my softness was not something to be ashamed of or afraid to show to others. You also spoke directly to that part of me that I thought was dead, and for the first time in so many years, at least a decade, it stirred in response to your words and the connection we made. Because of our friendship I was able to truly see what friendships were worth pouring myself into and what friendships would never be worth it. Mistakenly, I had given up on finding people whose love could heal the past and turn the future into a bright and welcoming place. I met you when I was at my lowest, when I wasn’t looking for friendship or accepting of kindness. But even despite my hesitation, you loved fiercely enough to more than make up for my reluctance to trust. I can’t even describe the sigh of relief that I felt in my bones when I realized that in you I had found someone who had the same intentions, the same fierce love, the same aching to help. I’m really glad I can speak some of the words you need to know, I wish I could do more. Our situations may be very different, but that doesn’t mean I can’t hold up a mirror and show you all the bravery and triumph I find so evident when I read your words.
The world needs more Mary’s in it, it needs more people holding up light for others to find, and I’m so grateful that even though you’ve been locked in a fight that no one else can understand or comprehend unless they’ve been in your place, you still find a way to keep shining so brightly, for yourself and for others. I’ll always remind you of that when you start to feel the darkness pushing back. I’ll remind you of it just because I’m constantly overwhelmed by how much of a joy it is to have your friendship in my life. ❤ Hope you got some easier, gentle sleep last night sweetheart.
wow as usual you have hit a home run again! Wonderfully written and si descriptive!
Wow.. As usual you hit a home run! So wonderfully written:)
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Tears are in my eyes. It breaks my heart to hear how she has suffered, knowing how I have, as well as yourself and the rest of the people living in spite of their chronic pain.
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I am so sorry for your pain and all you have suffered. I know you can certainly relate to this story and I want you to know through posts like this that you are not alone. Thank you for all of the light you share from your page and from your comments you leave me ❤ Merry Christmas
and strangely enough, the doctors are mad at me for not being willing to do pain management and take the pills. they think i’m naive and insane to self treat and so do so many with the disease, like they forget the doctors have yet to actually help many if not most of them. why are we so programmed to believe that someone who went to school for medicine knows our own body more than we do and taught to think they can not be questioned or ignored in favor of our own decisions?
How frustrating for you that your doctors are not giving you the freedom to listen to your body.
Even though so many of us begin very similarly with CRPS and chronic pain, no 2 people will share the same journey. No 2 people will share the same treatment protocol. What works for one will not work for another. This is what frustrates physicians about CRPS- that it never responds the same in any 2 patients, and the pain medication will only dull it a bit (if at all). Even if we take meds, we will still be in severe pain and will still need to search for alternative approaches. All of us must find our own unique path and must learn to listen to our bodies.
You are miles ahead of most by tuning into your health. I’m not advocating the use of pain meds, only advocating that we not be denied treatments or labeled as addicts- just as you not be denied your right to search for the treatments that suit your own unique needs.
Thank you for your thoughtful comment.
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Wow! I’m impressed!! This is very frustrating. Even thou you have a prescription for pain control meds, the pharmacy denies to dispatch it!! I can’t understand why health professionals don’t read and educate themself about the condition. This is with CRPS, you can see swollen limbs, redness, etc. can you imagine Fibromyalgia pts? It is an inferno for them. Narcotics or strong pain meds are made with a purpose, to relief severe real pain!! It is more safe for doctors to not prescribed these meds to avoid medicare audit and let in pain these ppl. Not fair, not proffessional and cruel. I have CRPS since 3yrs ago. I have also Fibro and had Cushing Syndrome. I sm also a nurse and my area was the ER and I NEVER let a pt suffering if was in my hands to help them. What’s going on?
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This is an awesome post! I’m suffering from CRPS since 2010 and this post is very common to me. But in my case I was called a drug addict by various medical professionals… It’s so frustrating 😦 My pain levels are still very high but I’m scared to go to a doc. That sucks so much…..
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Thank you, Tine.
You are not alone in being treated like a criminal when you are a patient- only seeking proper care. This is something I’m very passionate about as I have also been treated like an addict and know so many others who have been as well.
One of my very first blog entries was in regard to this very subject. I will include the link here “Pain Pills: Chronic Pain Patients Speak.”
I hope you can find a pain management specialist who knows CRPS. Pain management doctors who are familiar with this particular condition understand we need treatment, and that treatment may or may not include pain medication.
It is very upsetting that they don’t have many decent treatments for us, yet many are still willing to look down at us for taking certain medications. We don’t want to take meds, but the condition can worsen if not treated. I hope you are able to find a pain management Dr who can help you soon.
Quality of life is the most important thing.
I’m so sorry for all of the pain you are going through.
Reblogged this on aBodyofHope.
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