For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.
Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.
But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.
While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.
Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.
When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.
This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.
Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.
If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.
In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.
Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.
Migraines cost the U.S. more than 31 Billion per year in healthcare
Only $19 million goes into researching migraine disorders
~Find me at @aBodyofHope on Twitter
www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions
After many years of pain I then came on a time of suffering so unforgiving, it appeared my body would not make it out alive. But finally, I feel an awakening is upon me. In some ways, I believe my brain is renewing itself.
The putrid smell and taste of physical rottenness dissipated. The illness and ongoing pain have not left me by any means whatsoever, yet over this past year I have felt a change occurring inside of my mind. Maybe a transformation.
I did not realize how large a gap I had put between myself and my body these past years. I suppose the traumas experienced under medical care contributed to my drifting. My complete and sudden loss of physical independence surely didn’t help. However, there was no crueler attacker than my own body. To endure this unending physical pain and other debilitating maladies, I must have cut so many ties between me and my lump of person. To live under a physical betrayal so strong you realize no sense of personal willpower can guide the outcome- was an enormous blow. The only way to survive it was to drift beyond my physical self.
~Free My Self~
After the damage to my brain.
After disengaging from my great betrayer: my body.
After the pain went from unspeakable to so immeasurable,
I could no longer speak.
After there were doctors who were unafraid
to use uninvited hands on my body in its weakened state.
After family members had to dress and clean my flesh.
Yes, “my self” liberated from “my body.”
It had to, you see?
This recent awakening began with feeling present again. And new creative thoughts and senses followed. More than my only thoughts, “just breathe, drink, eat.” After years of survival alone, something new surfaced, like a tiny green sprout pushing its way through heavy concrete.
For the past few years, eating has been an uncomfortable challenge and chore. Although I have little appetite, I notice the smell of foods with a new curiosity. And my tastes have changed. I favor different foods and savor scents, flavors and textures I never enjoyed before.
All of my life I have been a sort of “Tom Boy.” Collecting bugs and rocks as a child, preferring to play outside with boys, spending far less time thinking of my appearance than most girls and women it has seemed. The only lotions or perfumes I own have been gifts. But coming into this renewal of myself, I have become acutely aware of my skin. For so long I didn’t have any connection to my flesh-I have even detested it in some ways. The betrayal, the dying, stinking body I could feel slipping away from this world. But it fought. It held onto life! And now, I dab a scented lotion onto my living body in appreciation. I inhale the mild fragrance all day knowing I am the bearer of this pleasant lingering smell.
When did my eyes become attracted to jewel tones like fuchsia and purple? I long to shop for clothes and home decor some day. What!? This is unlike me altogether. Then, as I practice my handwriting, it appears much more feminine than before (my scribble used to be a family joke). Reuniting with my body has brought about a womanly change in me. And I do feel different. Aware of new things. So much has occurred; I don’t think I can go ever back to being that person I used to be. I may as well transform into someone new.
My brain is making connections and is attempting to make friends with my flesh once again. Obviously, there are some new connections, as well. It is challenging to make friends with a body that constantly bites back, but some friendships are difficult yet still rewarding, right? I’m learning a lot about Neuroplasticity and how much the brain renews itself. I hope in time I will be making even more transformations. Who knows what other discoveries I will make along the way and what new connections I might find.
Please visit her enchanting shops of original prints and leather goods to purchase something beautiful for your home or gifts!
This entry has been included in The Spoonie Daily online magazine!
I recently watched Dark Girls, a documentary on African American culture. The focus was on prejudices based on skin tones within the black community and how this leads some women to devalue their skin and hair. Each women told a personal story of how she was disgraced by the shade of her complexion. Of course I am aware of this cultural phenomenon. However, hearing women of all ages share their intimate stories puts it in a perspective that would make any woman emotional on behalf of these challenges.
When I was a child, I was so envious of dark skin. First, you should know, growing up, we were the only white family on our block. I would swim with the neighbor children and watch the sun bounce light off their dark chocolate skin. On the playground, so many of the girls wore the plastic marble ball bands to hold their braids- which seemed to stand up, defying gravity. My little sister and I were so jealous of those hair bands! (Along with gravity-defying hair, of course). Hair that could twist and mold one moment and appear soft to the touch the next.
We got our wish for those marble ball bands once, but our braids fell limp. I suppose I thought the magic came with the bands. But that experience made me realize the girls on the playground just had magic hair that I would never acquire.
Everyone in our neighborhood had a special unique skin tone all their own.
Back at my crayon box there weren’t enough crayons to express all of my neighborhood playmates. Only one color to express my family though: Peach. When I asked what color we were, my mother said we are “white.” Confused, I responded, “No, we are peach,” and I ran to get the correct crayon to prove it.
Our Barbies we had collected up until that point were all the same color: Peach. The only variation was hair color. At this point, I asked for more colorful Barbies. That Christmas I got a Hawaiian Barbie. She had coffee skin, almond eyes, and long black hair. She was my favorite Barbie. My mother remembers this story and says at that time Hawaiian Barbie was the only non-Caucasian-looking Barbie she could find.
I’m really not trying to open up a can of worms with this entry. However, what struck my heart the most in the documentary was the little girl of around 3 or 4 who was asked to identify the ugliest and dumbest child. Each time, the African American girl pointed to the darkest of all of the images. And the prettiest, smartest child she believed was the lightest image. That experiment is a heart-crusher. If not, go get your vitals checked.
Below is CNN’s version of a similar experiment.
Without knowing the history and socioeconomic influences, she envies the light skin girl with the light hair and light eyes. And without knowing the history and socioeconomic influences, I envied the girls in my neighborhood with the chocolate brown skin and the magically soft hair.
Why do we always want what we don’t have? Why can’t we appreciate the beauty of others without depreciating our own beauty? Why do we grow up and cast judgement on others for being slightly different from us? I suppose this is the human condition. But just because it’s how we lean doesn’t mean we can’t learn to stand up straight, you know?
Please tell someone they are beautiful today. You truly are.
“You are altogether beautiful, my love; there is no flaw in you.”
Song of Solomon 4:7
Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few. Here are some ideas and tips to help you make it through as we enter into the holiday season.
1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”
See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!
2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”
See, you can play this game of witt too. What a wonderful party!
When in doubt, smile. Always keep them guessing. That’s why they call them “guests”! Or, em…anyway… When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a good time no matter how sick you are. You can always go to the ER later, tonight is for celebrating! So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!
Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.
Go purchase a fabulous original piece from this talented artist! Thank you so much for contributing Kim Legler!
Message from the artist and from her recovering brother: To keep video game playing to a minimum as it can be harmful to your health and to spend time in nature to promote healing. Twitter: @kimilegler
~In Her Shoes~
She asked me in a nice voice if I would wear her shoes.
It wasn’t the best choice, but how could I refuse?
The moment they slipped on, I swear I heard a crack.
Then something within me sharply turned to black.
The shoes no longer held me up as I fell to my knees.
I could not bear the weight of my dear friend’s disease.
She got down on the floor with me and held me for a while.
She put the shoes back on her feet and then she forced a smile.
I don’t know how she wears those shoes!
She must have so much strength.
I’ll never understand; I wish I could help her bear the weight.
This was written in honor of all of the women who live with invisible illnesses and invisible pain. May they have friends who try to understand what they face.
Poem featured on The #Spoonie Daily E-Magazine
Facebook asks me to take these ridiculous quizzes. Am I a pair of stilettos or a unicorn? You know the ones; they are meant to be fun… Like personality quizzes a Psychology dropout on pot (lots) would have put together.
I can say that I like potato chips more than honey, but am I answering the question this way because I now have low blood pressure and crave salty food all the time?
On a lazy afternoon would you go hiking, hang with your friends, or lie around and do nothing? Well, now that I’m sequestered to bed in a dark quiet room on account of my “hot messness,” (intractable chronic migraine & csf imbalance) how am I meant to answer?
I think of the many lives I have had and I am grateful for each one. Because I’m a woman, I know that every woman reading this has multiple lives. Many great-balancing women juggle all of their lives at once, but my lives are like a cat’s. Each one is unique and wild with stripes and spots. While each life ends and another begins, my soul remains constant. Once I could tell the pothead quizmaster exactly which kind of fabulous shoe I prefer without my chronic pain condition in my leg confusing my answer (fyi: wooden strappy wedge).
Do I answer a personality quiz without taking my ailments into consideration? But those things are just what I do, they are not who I am. I am not my illness and my illness is not supposed to define me– yet it’s really good at influencing just about every part of my life now. What about becoming a mom and how much a woman’s life changes when she has a baby? You are still you, but everything else in your life is now changed forever. And the truth is, my personality HAS changed in some ways because of these hardships…how could I not grow or evolve?
I’m still the person I was. I still love all of the things I can’t do anymore: the hiking, the kayaking, wearing fabulous high heels (probably not simultaneously)…I don’t pine away 24/7, but when I’m faced with the specific question: Who are you? I do feel fractured.
Oh well… I’m fractured, I suppose. Oh, and I’m also a Dragon, apparently (thanks quizman). I wanted to be Fairy. Well, maybe in another life (wink).
This was a piece I contributed to Project Naked. This is a great program/blog in which women from all backgrounds, ages and walks of life share stories about their bodies. All women are invited to contribute. They are very hopeful to hear more from those with ongoing health concerns as the relationship with our bodies is so unique. Follow this link to read my Poem “This Body” and other women’s powerful works.
Here you can learn more about submitting one of your own pieces to: ProjectNaked.