Blog Archives

What to say when you don’t know what to say…

In the face of pain, heartbreak, and crisis, most of us don’t know how to react or respond. We want to be an encouragement, we want to comfort, we want to relate in some way…

Words often seem so empty and useless in the wake of tragedy.
 
Most of us have comfortable responses we share when we don’t know just what to say: 
“It’s going to be ok”
“You’re strong”
“You’re going to get through this”
“I’m praying for you”
“God is in control”
 
All of these are true, yes! But is it what you’re truly thinking? Sometimes the truth isn’t always comforting, and sometimes honesty is exactly what someone needs to be met with when they are feeling vulnerable. 
 
Maybe you’re speechless, and aren’t sure you have the right words for such an enormous moment. What if you said that?
 
Maybe you’re angry that this is happening to someone you care about so deeply. What if you expressed that emotion?
 
Sometimes it’s a comfort to hear that others are experiencing a range of emotions when you’re trying to process your own. When a friend steps into a crisis situation, they may feel numb at first. When you express your emotions for what they are going through, it can help them begin the healing journey.
 
Most of us feel helpless when people we care about are in trouble, because in truth, we would rather solve the problems than stand by and watch them struggle.
 
I wish after all these years I were confident that I have the right words to comfort and encourage. I don’t always know what to say or how to feel, but drawing from honest feelings and thoughts is better than a canned response, even if I’m certain the words I have to offer are imperfect and insufficient.
 
More important than searching for the perfect words to say when you’re caught off guard is to be around afterward. Check in, mail a note, be available, show up. More than what you say, it’s what you do that makes all the difference.

 

…With a little help from my friends

Happy New Year, everyone! I have now been blogging since August, 2014 and I’ve met so many amazing people along this writing road. These individuals have taught me, inspired me so many times and in special ways, and they have become my friends.

Friendship and community were something I least expected from blogging, a venture I assumed would be one of solitude, but it has shown to be incredibly interactive and instructing to me because of all of you. It has been much too long since I have thanked my fellow blogger friends appropriately, so I’m going to finally accept an award that was generously given many months ago. Please check out the blogs below and follow them. [Full disclosure] I don’t spend a great deal of time each day reading blogs, so trust me when I say that they are well worth your valuable time.

Earlier this year, the hot steamy Migraineur blogger at SexyAchyMoody.wordpress.com took a day off from giving advice on how to stay freaky and fabulous with chronic pain to award my blog with the Encouraging Thunder Award! Thanks girlfriend!

Encouraging Thunder is a spell that grants the gift of thunder and protection for bloggers so they can master their true purpose. It was created by Raymond, founder of encouraginglife.co.

[Cue foggy mist, no… not brain fog.]

And so, I now bestow the Gift of Thunder onto these wizards of the written word. May they be empowered to express themselves freely and truly, with magic of the pen… and the computer…and spellcheck…as their’s is the only voice like it in the world. 

FindingoutFibro: My best blogging buddy (BBB), Jess, is a young woman sharing her life with multiple debilitating chronic conditions. In this article, Distraction Therapy, also published with Axis Dance Company, Jess shares the free, creative methods she employs to help her cope with her disorders. Jess has a broad range of knowledge on many aspects of health she shares through her blog, and is a passionate advocate for ableism and women’s issues.

IamChronicallyWell: Also known as “Chronic Nicole” discusses Selena Gomez’s recent Lupus diagnosis, and how the media has treated her, in comparison to how most people with chronic illness feel when they are newly diagnosed in Celebrities are Just like us part 2. On a regular basis, Nicole practices tongue-and-cheek writing so well that she should have a disclosure for readers with weak bladder conditions. Just sayin…

TheGadAboutTown: Mark shares his research of culture, literature and history, seen through the lens of his own witty, charming perspective. It was difficult to decide which of his posts to share with you, as they are always excellent. In this post, For Your Eyes, he asks the timely and wise question, “how much of our lives should we expose to the public?”

LifeinSlowMotionBlog: Both a chronic pain patient and professional counselor, this blogger shares what pain is teaching her. She asks the kind of questions that keep us up at night, the ones that no one else around us understand, she asks and explores through a compassionate and spiritual heart. In this post, How to Find Online Support when you have Chronic Pain, she guides readers to the best places on the internet to find caring support groups.

JustPlainOlVic: Vic, is a true family man, a father, and a husband. But beneath the surface of “Plain ‘Ol Vic,” you learn he is carer to a wife with Bipolar Disorder and Chronic Pain. Each day in his journal-style blog, he shares his life balancing work, raising his children, and being the support he has vowed to be for his spouse. In this heartfelt post, he shares a life lesson his grandmother taught him, and how it applies to his life today. [If you are on the flip side of a carer like Vic, I urge you to follow his blog.]

LivingwithObstacles: My best online friend, Julie began blogging this past year just after a heart attack induced by the effects of her 16 year battle with CRPS/RSD changed her life, yet again. On her blog, she writes about family, teen addiction, motherhood, chronic pain, loss of career, and how to rebuild on broken ground. Julie is a true warrior, and she has fought and won more battles than Archie Moore (most career knockouts in boxing).

KathleenBurkinshaw: is a blogger, mother, wife, chronic pain patient, and soon-to-be author of her first book! Her posts are like cracks of her soul shining right through the screen into yours. In this beautiful piece back in March, Unconditionally, she shares the meaning of real unconditional love, after losing 2 close family members. Stay tuned for Kathleen’s writing career to skyrocket, and you can say, you knew her when…

SublimeMercies:  Charlotte Issyvoo makes a wheelchair and cane look downright en vogue! She is not only a chronic pain blogger, she photo-documents her vintage ensembles, is a passionate advocate for child abuse, and she shares her feelings on women’s rights among other topics she is always well-versed in. Here, in one of her latest posts, she shows us how to bring the best of 1970’s fashion to our wardrobe using pieces we already have. Move over Ferra!

TheSickDiva: One of my closest friends, Jenny, an RSD blogger, shares her struggles with chronic pain and the health system. No matter how severe her pain is, she leaves you with a message of hope, love of family, and keeping God first. Her latest post on her experience with the medication, Lyrica, will make you think differently about your own medications: How Vanity Saved Me.

Mary Jane Gonzales is a long time author and advocate in the chronic pain community. Find her on Facebook uplifting people in pain, sharing research, new blogs, poetry and hope for the weary on In the Blink of an Eye. Also, check out her brand new poetry share group, Poetic Hearts for a supportive community of creative writers and those who appreciate original poetry.

Escharae writes about her personal path through Multiple Sclerosis as a woman, student, and young passionate person working through the questions of life and illness all at once. On her page, you’ll find compelling videos of neuroscience advances, infographics of health related issues, and personal accounts of her own life. Find out more about how her journey with MS begins here on her MSanniversary blog post, and where it has brought her thus far.

 

To every single reader and fellow blogger who drops by, follows along on Bloglovin’, WordPress, Twitter, or by email, spends your very valuable time reading and showing your love, thank you so much! I feel truly humbled. Wishing you a happier, healthier new year ahead.

~Peace~ 

An Act of Kindness

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This is just a sampling of years of photographs that my good friend has taken and shared with me since I can no longer enjoy the outdoors.
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Now, my friends on Facebook who are also home-bound look forward to her photographs.
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She has been snapping and sharing pictures of her nature walks for the past few years because I have been confined to a bed and unable to go outside due to chronic illness. She brings the outdoors to me through the art of photography.
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In our friendship, nature has always been an important aspect, so we connect now through her breathtaking cloud photos, landscapes, and plants. Without her, I wouldn’t see the wondrous sky, I’d never know when the leaves were changing, or get to experience the colorful spring flowers. I write that with tears in my eyes for all of the beauty she lends on some of my darkest days. Even though I tell her, I doubt I have aptly expressed how deeply her labor of love has truly meant to me over the years.
She inspires me to do more creatively, she exemplifies the importance of meeting small needs, and she is a reminder how acts of kindness can make huge differences in people’s lives.
10457963_10202353246604935_5388975173777239688_nI hope she has encouraged you to find the opportunities and needs around you, and find ways you can make an impact. Be well!

“A Lonely Life” by Mary Jane Gonzales

I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net

Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.

But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.

Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.

But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.

Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.

Find her books here available on BarnesandNoble

Sprinkle Happiness: Pay it Forward Initiative 2014

A couple months back, an old friend posted a message on Facebook asking which 5 friends of his would participate in a Pay it Forward Initiative for 2014. “I WILL!!!” I said (probably adding a smiley face- ok, more like 3 smiley faces). I agreed to send some type of small gift or mail to surprise 5 different people during the remainder of the year (besides birthdays or holidays). This post is not to brag about doing something nice. So many other people participated in this effort throughout the year…it’s not about me. But I want to share my part and what I learned from the Pay it Forward Initiative to hopefully inspire others to do something similar.

A while back, Charity Elise, the artist of the first featured piece above sent me her most popular image after we conversed online. I had fallen in love with her art posters long ago and was excited to finally find her shop! In my mind, she sort of kicked off PI.F. for me by doing something so kind and generous. I imagine you have seen her work before on social media or Pinterest. This particular image and quote is extremely popular, especially in the chronic illness community. It’s not surprising people who are not feeling well are so drawn to such a vibrant image with an encouraging quote to match. Her beautiful Voltaire quote piece is hanging on my wall beside my bed and I am inspired by both her artwork and her kindness daily.

When I signed up for P.I.F. a few months later, my Voltaire print from Charity Elise called out to me (Send me! Send me!). When a fresh print arrived to my new acquaintance, she was being hospitalized after an emergency health scare. She said the artwork from a new friend helped to brighten up a dark time. When people have chronic illness, we are sick every day and might be in the hospital frequently. We don’t get flowers or cards that say “get well soon.” So getting something from a friend now and then that says, “I still care you are sick can mean the world.

These adorable spoon earrings went to my “Spoonie” friend who collects jewelry. Aren’t they soooooper cute?! Something else lovely happened with this purchase I just HAVE to share. Heidi, the creator of the Hammered Spoons shop was so inspired by the Pay it Forward Initiative, she refunded my payment and sent them herself! Amazing, right?! Heidi is a chronic illness survivor as well, and supports awareness causes through her hammered spoon sales. Like one giant hug of goodness going on!

My good friend and I were talking a while back about how her favorite face cream had been discontinued after using it for 30+ years. She hasn’t found anything else she isn’t sensitive to in the years since having to stop using it. I did a little digging and learned that her favorite product is actually still being sold; so, I was very excited to surprise her with a tube of her long-time face product! Reunited and it feels so good!

Still me

I read Still Me by Christopher Reeve about 10 years ago when I was first diagnosed. I remember listening to it on audio in my car with tears streaming down my face, but his amazing story empowered me to persevere. I still think about that book often and how much Reeve’s story has impacted me and so many others. A family member has recently been diagnosed with Arthritis, so I sent her this book. I pray she finds the same comfort and encouragement that I have found in his powerful words.

Lastly, I made something special for my Facebook friend who is going back to school. I covered a notebook with a magazine clippings collage. While I was doing this craft, the past month has been increasingly difficult for my friend. I wish I lived closer so I could give her a big hug, but this little creation will be my hug to her. I hope every day she is at school, she will keep it with her and know how proud I am that she is pursuing her degree despite all of the challenges in her life.

*****

Pay it Forward is not like a chain letter. I’m not supposed to be GETTING 5 gifts in return. However, since signing up for P.I.F., I’ve been receiving sweet little things in the mail from different friends of mine. One was a beautiful, unexpected painting my friends created. It’s so bright and colorful- I love that it reminds me of our long-time friendship. Another friend sent wonderful handmade stationary she put so much effort into making.

I have received more in my spirit through the giving process than I can put into words here. The biggest surprise with P.I.F. was that each of the people I sent something to truly needed a pick-me-up and each felt the timing of the gift was perfect. Sending something out of the blue to a friend or acquaintance… just a post card or a little unexpected “I’m thinking of you” snail mail can interrupt someone’s day with kindness and light like you wouldn’t believe.

Hey you…Yes YOU!!! I would like to challenge YOU reading this to Pay it Forward to 5 people in 2015. I would love to hear how you sprinkled kindness over your world in the coming year. I hope you see blessings in abundance rain down on YOUR own life in 2015. Peace.

******

Voltaire Quote Art Print by CharityElise | Sprinkle Kindness: Pay it Forward 2014 article #generosity #dosomethinggood #abodyofhope #Spoonie

Thank you Charity Elise for allowing your fabulous Voltaire Quote artwork to be featured today. Please check out her other vibrant prints and sweet ceramics on Etsy. 

www.Facebook/ChARiTyEliseDesigns

Don’t Come Crying to Me: How can Pain make us Better Friends?

Sometimes those of us who have had very serious struggles can have some hang ups when it’s time to show compassion to our friends. Not all of us, and not always, but there are those times when our friends or family are facing difficulties and we end up doing or saying the very things we complain about people doing/saying to us when we are in need of support.

Why don’t we know better? Spoonies may even be the worst at this. Has anyone ever said, “I shouldn’t be complaining to you about my little ______.” I have come to believe that this is a problem. If anyone should be hearing out someone’s difficult day of not feeling well or emotionally struggling, don’t you think it should be someone who can empathize with feeling crummy? Yes, even if it’s a cold!

We who have gone through our daily battles, we who have lived in survival mode on and off for so long, and then when a loved one falls into his/her own valley: shouldn’t we be the best people for the job of lending an ear? But in stead, we listen to that little voice that says, “Are they kidding me with this?” Or, we try to give them our sage advice to protect them from what is coming. We may know some of what they are facing, but we aren’t them. They have a unique struggle, isolated from ours. Their pain, however similar or maybe seemingly less than ours, is relative to their own experiences in life. A struggle or illness that is tearing someone’s world apart, however lower on the pain scale we believe it is- still is shattering his/her life into pieces in ways we may never understand, and in ways we may never face. (see Proportional Pain and My Guilty Genes)

After surviving so many challenges, we often view others’ battles through the lenses of our own lives. Sometimes we go further than relating and into the realm of “been there lived that, bought a T-shirt.” Remember how, “I COMPLETELY understand” feels when someone says it to you on a bad day? It can feel even more isolating.

But we often do understand so many challenges because we have walked such a painful road of our own. We want to make sure our friends know they are not alone. We can be close by emotionally, available, and most of all: COMPASSIONATE. We don’t need to remind them how much pain we also have felt, or how many times we have been in their shoes. We don’t need to compare horror stories or solve their problems every time they have an issue we believe we can solve. Compassion is the language that tells your loved one that they are not walking their harsh road alone.

*

I have to confess that this was written in response to a few of my own very dear loved ones recently facing some challenges. I fear I am guilty of failing them in all of the above ways in attempts to “help” when I should be the one person who knows how to handle their pain and grief, shouldn’t I? However, they have been teaching, growing experiences that I am thankful for. In the beginning years of my illness, I used to get secretly annoyed with people for even talking about their allergies in my presence. But now, I want to be the person people come to for comfort. I pray I can continue learning to be a humble, caring, compassionate friend for those I love so much.

“If pain doesn’t lead to humility, you have wasted your suffering.”

-Katerina S. Klemer

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Passengers Conceptual Photograph by Elle Moss | Grant me Compassion in my Friendships

Passengers by Elle Moss

Thank you to Elle Moss Conceptual Fine Art Photography

Please go purchase one of her lovely original prints for your home or gifts. She has so many whimsical, seasonal and Autumn images to choose from.

Love Yourself Hard

Get ready to be inspired. (Grab a tissue). Had to re-blog this:

Susan Cottrell & FreedHearts

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My darling friend (codename Salarcon) is consistently more joyful than many of us put together. She has her struggles, as do all of us, but she has an incredible peace in the midst of those struggles, as do few of us.

She is also a Poetry Slam Goddess and host of a new YouTube poetry program, and her recent poem (below) is about joy — whatever the circumstances.

Life is short, my friends. Whether you are concerned about your orientation or you child’s, or falsely afraid that God does not love you or approve of you, or afraid you somehow do not deserve to be at the table with everyone else, please. You don’t have to do that to yourself.

It’s time to love yourself… hard.

Enjoy Salarcon’s poem… ❤

 “I’ve got sunshine on a cloudy day

Whether it’s cold outside I’ve got the month of…”

May 3rd

Amanda dances…

View original post 381 more words

In Her Shoes: poem

Stiletto Memory" Sketch by Mary Mattio #abodyofhope | "In Her Shoes" #Poem for #InvisibleIllness #IIAW14

Stiletto Memory

~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.

aBodyofHope

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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.

Invisible Illness Awareness Week 2014

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Poem featured on The #Spoonie Daily E-Magazine

and InvisibleIllnessweek.com

How Robin Williams saved Superman

In 2004 I read Christopher Reeve’s autobiography, Still MeI had recently been diagnosed with a neurological condition which was quickly crippling me at 22. And Superman had just died.

I didn’t so much read the book as I did listen to it on audio book. Christopher Reeve’s voice filled my car as he read his own words. I still remember how his breathing machine sounded as he gasped for air while still comforting me with his powerful life’s message of hope, courage and perseverance.

While Christopher Reeve’s autobiography is one of the most inspiring and memorable books I have ever read, this story is about Robin Williams and their friendship.

After the dashing hero’s tragic accident, he was in the hospital for months. He underwent a series of surgeries and it was clear he would never regain feeling or movement below his neck. In the days after, Reeve had lost all hope, yet he could not even take his own life, had he tried.

Superman’s best friend was a fuzzy little curly-haired man with sparkling blue eyes and enough energy to light up Manhattan. Robin Williams and Christopher Reeve had met long before either of them were recognizable. They were roommates in college at Julliard and remained best friends thereafter, supporting each other’s acting careers and their families spent time together.

Robin Williams appeared in Reeve’s hospital room, fully dressed in scrubs and a face mask, speaking in a Russian accent. “Time for your rectal exam!” Williams exclaimed. He spent the day visiting with Reeve and helping his friend regain the much-needed light he had lost.

In his book, Christopher Reeve wrote,  “For the first time since the accident, I laughed. My old friend had helped me know that somehow I was going to be okay.”

Reeve and his wife went on to change the face of spinal cord injuries along with the perception and treatment of paralysis through the Christopher and Dana Reeve Foundation. Robin Williams became involved in Reeve’s foundation, and they continued encouraging each other over the years. Williams took a greater role in the foundation after Reeve and his wife passed…what a great friend.

Ever since reading Reeve’s autobiography, whenever I would see Robin Williams, I thought: he may have saved his best friend’s life. And without that friend to penetrate the darkness and shine a light on the hope he could not grasp on his own, Reeve may have never started the foundation which has been a beacon for so many individuals. We all know Robin Williams for his abundance of sensational talents. However, I think I can take liberty in saying that those who he loved knew the kind of friend he was and the legacy of love he will leave behind with them.

My first entry is dedicated to Robin Williams and to friends who lift each other up out of dark places.

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