Category Archives: Inspiration

Kiss my Affirmation

If you like someone to boss you into positive thinking, this affirmation list is the perfect place for you. Welcome! By the way, that was your first affirmation. I’m charging you per happy thought- they don’t come cheap these days, you know? If this makes you smile, that’s double. Technically, it’s not exactly a mantra, but it still counts as positivity. I didn’t make up the rules! If you don’t like it, take it up with the Bureau for Good Vibes. They are monsters when it comes to positive thinking. Just try to have a single doubt in their presence, and security will escort you straight out of the building. Those people sound laid back and relaxed, but that’s just what they want you to think. The truth? Two words: Illuminati. 

In an attempt to get on their good side, I’ve bribed them with a vintage set of Bob Ross, The Joy of Painting VHS tapes. I’m crossing my fingers that Bob’s “happy little trees” and positive vibe-spraying hair will get me some good karma with the underground happy committee. So I’m sweetening the pot with this affirmation list. 

All kidding aside, below is a mix of uplifting words, and useful reminders for you and any friend who might need a pick-me-up. I like to tack encouraging messages for myself up on my wall as a simple way to keep focused on bright spots in my life. (Especially when that darn happiness bureau is out there😉).

  • Your butt is the perfect size. 
  • You give good Facebook.
  • Repeat after me: “It’s ok if the house is messy.”
  • You folded the socks today- good job! You deserve a cookie.

  • You are enough- as you are.
  • You don’t have to be fearless to be brave.
  • Try being grateful instead of guilty.
  • It won’t be perfect, but it will be epic! 
  • Don’t forget that you’re a stone cold warrior.

    • You didn’t swear in front of the kids today! A++
    • You changed out of your slippers! Well done, you.
    • You almost worked out? Gold star🌟 You earned yourself another cookie 😉
    • The plants are still alive- that’s the way! 

    • You paid all your bills on time ✔✔
    • You wore a bra today- Killing it!
    • A nap is a great idea!!!
    • You ate a salad? Beast mode.

    • Face each day like you have a glue stick in one hand and a jar of glitter in the other. 
    • Punch today in the face like it’s bullying your kid. (But don’t be seriously punching kids for real though, k? Weirdo.)
    • Take your vitamins, get some sunshine, wash behind your ears, and never forget to DVR Project Runway.

    • Stop. Freaking. Out.
    • You’ve got this.
    • Deep breaths.
    • Tomorrow is not for today.

    • You are meant to be. 
    • Your purpose goes beyond the walls of a building. 
    • God has always loved you, and always will.

    • No need to make the bed- what kind of psycho does that anyway? 
    • In some cultures, tummy rolls are a sign of beauty and prosperity. True story.
    • If you wish you had more curves, smile more. Your smile is the best curve on your body.

    • Smile. Take selfies. Wear what you want. Be happy in your skin. There are millions of people who would love to look like you (including you in about 20 years.) 
    • You can’t buy happiness, but you can buy chocolate. And that’s pretty close. 
    • I followed my heart, and it lead me to the fridge.
    • I’m learning to be my authentic self…my authentic self believes you should be doing the laundry.
    • On an emoji scale from unicorns to poops, make today a unicorn kind of day🦄

    • In today’s world, caring about other people is about the most radical thing you can do.
    • If your grandma were going through what you are now, what would you want to tell her?
    •  All of this will be worth it in the end. 

             

            According to studies in positive psychology dating back since the 1980’s, the way affirmations work is you must be mindful to repeat the same phrase to yourself over an extended period. Say the positive affirmation every time you have the compusively negative or harmful thought you’re trying to replace. For example, each time you have a reocurring thought or feeling of loneliness, use the same powerful phrase, quote or prayer to affirm that you are loved. In time, you can actually change your own mind and the way you think!


            I would love to hear your personal favorite affirmation in the comments section below.

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            Inspiration, for a bad day

            You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do. 

            It doesn’t make it any less horrible to know that 100 million Americans with chronic pain feel this way, but it may help in some way to remember that your feelings are normal. 

            Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones required to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic”  neurotransmitters like  serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness. What might have been a passing thought, thanks to the rigors of chronic illness, can become a spiraling pit of despair. Pain wriggles into your very soul, and drains you of every resource. 

            This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness swallowed me up.

            If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

            I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked. 

            You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be. 

            You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing. 

            If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them? 

            You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll  go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today. 

            You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.

            You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s. 

            One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE)  than we hear about people regaining health and wellness. 

            There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice. 


            As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!


            “The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

            -Marion Zimmer Bradley

            Self Portrait Chronic Pain

            “Life on Fire”

            These are 2 self portraits expressing the neurological and autoimmune disease RSD, also known as Complex Regional Pain Syndrome.

            “Outer Smile”

            There are those who wonder why those of us confined by pain and illness choose to continue a life suffering when all has been done, and there is not much more to do than to try to make us as comfortable as possible.

            Most will never know as much torture as those who live with chronic neurological disease. But to be miserable, to be a victim in your spirit, that you must fight with every effort. 

            It may take all you have and more, but you are indeed needed in this world. Never, never give up.

            Dear friend, never lose faith that your life purpose for being on this earth is so much more powerful than your pain. 

            I believe in a loving merciful God who lends strength when we get to the end of ours. 

            I fight to survive, to choose life every day when my body begs the opposite. I want to encourage you today to take on your battle in your own life.

            Hugs gentle warrior. 


            Please share below how you continue to press on despite seemingly insurmountable challenges.

            What is Your Purpose?

            We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true. 

            What if I told you that having a “Life’s Purpose” is a myth. 

            We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days. 

            Why is this philosophy problematic? 

            …Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire. 



            Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.

            You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life. 

            The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit. 

            A Life’s Purpose is not the same as a Life of Purpose

            We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments. 

            Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time. 

            Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator. 

            I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.  

            Inspirational quote by Marianne Williamson


            Full quote:

            “We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

            -Marianne Williamson 

            You are an Overcomer- Never forget

            I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.

            Each morning, you might want to start fresh, and leave the past behind you, right? But please, friend, don’t forget everything you’ve overcome.

            Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.

            Don’t forget when you ran out of every last molecule of energy you had left to give, and you had no idea how you would keep going another moment longer…. but instead of giving up, you found something else inside of you that carried you forward. Don’t forget that driving force within you.

            Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”

            Remember when you were ready to forget it all?

            How are you still here after everything you’ve been through?

            Don’t forget how you made it!

            Don’t forget that force inside of you that begins when you’ve reached the end of yourself.

            Don’t forget.

            Ever.

            As seasons change, as life continues to surprise you, carry yourself as the OVERCOMER you are.

            ******

             

            Links to the featured artist: The Last Sparrow (artistic home furnishings on Etsy), Follow Voilet D’Art on Flickr, Twitter 

            Second Annual Disability Pride Parade in NYC!

            Today was the second annual Disability Pride parade in NYC! 

            Here in this video you’ll see disabled individuals dancing together to commence the opening of the parade. This dance speaks to the nature of disability- the diverse disabilities we can see with our eyes, and those which are invisible.

            As you watch the video, and think about some of the reasons for a parade like this…

            Many who have declining health feel ashamed of their bodies, and in time, may also feel ashamed of themselves. Friends stop reaching out as health issues just sound like “drama” to most people who have never faced a health crisis. So many have been forced to leave behind a career, or dreams they once held dear. Although it sounds harsh, it’s not uncommon at all for family members to tease or bully as individuals change physically and/or mentally, leaving them extremely self conscious. People can be very judgmental of body shapes, walking aids, and challenges that are unfamiliar. Others are quick to call out what they see as “inconsistencies.” Even strangers in public call those in wheel chairs “liars at times when they don’t understand that paralysis isn’t the only reason one might need the aid of wheels, or that a handicapped parking spot might be needed by someone who can walk normally.

            It’s no wonder that people start to lose their self worth, and isolate themselves as a disability changes them.

            You know what? FORGET EVERYONE!

            So, this isn’t a news flash, but people don’t get it, and they don’t get you. You, my dear, have so much to be proud of, and SO MUCH to share with the world! 

            You are an over-comer, a warrior, a never-giving-up, wheel rolling, cane sporting, walker toting, re-inventing, hope finding, doing it anyway, sometimes invisible illness (but never invisible)- always working to conquer your challenges: BRAVE fighter! Heck yes you should be proud!!!

            You don’t have to prove how much pain you’re in every day, how badly cancer changed your body, you don’t have to show your prosthetic, or tell anyone what your mental illness is… unless you want to. You are living proof of pure strength. You don’t have to work to be an inspiration to anyone, but hey- you already are, kiddo. You’re pretty spectacular just the way you are, in the body you have right now.

            Please don’t keep your amazing self on lock down. You’re the only you this world will ever have! Heart (((hugs))) going out

            What do you think of the Disability Pride Parade? How are you #DisabilityProud in your own life? 

            I don’t have the Privilege of opting out

            I can’t sleep. I feel so helpless and outraged over the losses and violence in the last week. I don’t want to pray about it. I don’t want to blog about it. I definitely don’t want to discuss it incessantly with others on facebook or twitter while we sit safely in our homes.

            I want to do something.

            I want to help.

            I want kids to stop being killed on our American streets: black kids, gay kids, cops… are we at war? Because we are tearing our own people apart.

            I don’t actually feel like I have a card to play. I’m a white woman in a safe neighborhood. I have plenty to eat. I am certain I’m privileged in ways that I haven’t even thought about.

            Until I was in high school, I was raised in a home with bars on the windows, guns shooting every night, across the street from the projects, all the kids in the community had to be inside by dark. We were the only white family around, but our neighborhood was so diverse, that I grew up without the concept of racial divisions. But this world is going backward. My mother said yesterday that this week reminds her of the riots of 1968 as tears rolled down her face. We are going backward.

            I told my sister this weekend that I’ve been having nightmares about her upcoming vacation to FL ever since 50 kids out at a gay night club were murdered. She said that she and my sister-in-law have been cautious after dark, and try to stay around areas with police even if they are out to eat after the sun goes down. They are an interracial gay couple, and theoretically this America accepts them today. But if you follow the news, you know that they BOTH remain in danger, so they show up in my bad dreams.

            There’s a whole lot of sharing right now about forgiveness, unity, and praying from white people like me, but where is the outrage? Where is the responsibility to DO SOMETHING?

            I might be white, but I don’t feel I have the privilege of doing nothing right now.

            We are ALL responsible, don’t you see? This our world.

            Use the hands and will and talents God blessed you with to rise up and help when something terrible happens in our country. Give blood, go to a peace rally, set up a GoFundMe page for one of the families involved in the shootings, organize a fundraiser in your community for an ending gun violence organization.

            Instead, a lot of people are saying things like, “all lives matter” not just “black lives matter.”

            Listen, it’s easy to say that when you aren’t part of a disenfranchised community who is desperate for a voice. If you have said that, remember that you have children right by you who don’t have enough to eat, young women, men and children being sold into sex slavery right in your community, and someone within walking distance is home-bound for the rest of their lives because we haven’t received competent medical care. These lives matter, and there are groups concerned to raise awareness for these victims as well.

            My point is that it’s hypocritical to give children with autism a voice who need it, and also say that the black community shouldn’t raise its voice also. To have an ALL LIVES MATTER world, we have to be equals, and ALL have an equally loud voice.

            You don’t have to use a hashtag or join a group of protesters to help build equality. Compassion, empathy, and action are the missing links that can help build bridges that we are craving for unity.

            I pray this video from poet, author, and life force of nature, Maya Angelou is a peace to your heart, and an encouragement for you as she is for me.

            I may feel helpless today, but never hopeless for change. Please be safe. God be with you.

             

             

             

            “Doing good for others is healing to the soul” Graphic

            Doing good for others poster

            Sick Lives Matter

            Sick Lives Matter

            I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication?  No one should be suffering like you are.”

            Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.

            When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.

            This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.

            People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.

            #sicklivesmatter

            Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.

            Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.

            #SickLivesMatter

            You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.

            I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!

            You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.

            If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?

            Wrong! They aren’t shutting us down, they’re starving us out! 

            We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.

            You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently. Even though it’s not your job to be an inspiration… you already are. You matter. 

            #SICKLIVESMATTER

            Email abodyofhope@inbox.com if you would like to share your story or to ask how you can get involved with advocacy programs online.

             

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