Blog Archives

…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!

Learning the Gift of Gratitude

Gift of Gratitude poster "Gift of recieving" abodyofhope.wordpress.com #gratitude #spoonie

Have you ever thought that you are the best friend you know? Are you the most responsible, caring, compassionate, shoulder-to-cry-on kind of friend who drops everything to be there for the people you love? Have you ever wished for a friend like yourself?

I used to think that. Although I so adored the people in my life, there were times when I felt some of the things I did for them went under-appreciated. When I had problems in my own life, when I needed someone to make me feel better, I felt empty handed. Sound relatable?

I was a doer, a giver, I needed to be needed. I set my life up so that I was the go-to person for all of my people. I was the Olivia Pope of my world. Even when I moved to a different state, within months I was the one person anyone who knew me could count on. I constructed a safety net for everyone else, but when my own life turned upside down in the form of chronic illness, I felt there was no one to lean on.

Even after illness set in, things did not change. In fact, I felt that no one had a grasp of anything I was going through. For the first time in my life, I was desperate for some care from others and it seemed that no one knew what to say or do for me. Looking back now, some people were generous, and a few did reach out to me. I think it’s because I never learned how to ask for help before, I couldn’t recognize a gift of compassion and I was too prideful at the time to see when people were trying to be there for me.

I was so programmed to say, “No thanks” and “I’m fine” when people tried to help me out. I think I probably pushed them away without meaning to. I didn’t fully learn the gift of receiving until later on.

Sometimes tragedy is like this. The harder things get, the more clarity we can find.

You get so accustomed to being self-reliant and needed by others for so long that when it is time to accept help from another person, it’s like a foreign object that you naturally repel.

People who cared about me wanted to be there for me, but I usually shut them down. There were those who never knew what exactly to do or say, but they tried to just be in my life. I know now that the people who stick around in uncomfortable times are keepers.

Letting loved ones know how exactly they can help makes the people around us feel less powerless. If you give your loved ones specifics, they can learn how to better help with your complex needs. Hints and mind-reading definitely doesn’t count.

I know from personal experience that receiving help and asking for what you need can be a humbling experience. It’s lovely to help others but it can be humiliating when you’re the one who needs the help. That is the first thing I had to try to accept. You will have anger about it…try not to take it out on those giving to you. Don’t say things like, “I’m sorry you have to do this for me,” or “you will get tired of helping me,” or “I can tell you don’t want to be doing that for me.” Don’t critique their attitude, or predict future resentments. Instead, lead with gratitude. Say “thank you.” Your appreciation makes others feel positive.

Gratitude isn’t only an emotion, it’s also a state of mind, and a form of personal expression. The great thing is you can choose to be grateful even at times you don’t necessarily feel that way.

You already know how good it feels to do for others. Learn to be a gracious receiver.

Remember, you are worthy enough to accept the very thing you do all the time for other people. If the situation were reversed, would you be there for your loved one in the same way?

It has taken me a while to learn that lesson. I am still learning… Those who give of themselves are always teaching me to be humble.

I had to consider why my life had always revolved around being helpful, yet I could not receive the help offered to me. To top it off, I was too prideful to ask for help.

When I was finally able to say “thank you” and mean it from the bottom of my heart without resentment, anger, shame or fear: gratitude swept over me and lit up everyone in my life like Christmas lights.

Before, giving and being needed was how I defined myself. Learning to receive showed me the love everyone around me had to offer.

This lesson has been such a challenge; I am still learning to receive and to appreciate the blessings in my life, but the gift of gratitude has been a life-changing lesson. I believe learning to receive with a grateful heart makes a person a more understanding, more compassionate giver.

People love you and are there for you, too. Maybe not in the way you want them to be, but they might be exactly what you need. You are worthy of their love and their help.  Please don’t miss out on receiving the blessings that God is trying to bring into your life.

How Years 16-22 Changed my Life at 28

“What’s with all of the appreciation? Isn’t pain and illness miserable…aren’t you suffering every day and lonely in bed? Don’t you hate that the world is spinning without you?” Don’t get me wrong, I’ve had plenty of pity party time over the years. Plenty of my own misery that I’ve crawled into. I still do from time to time. But, I have more gratitude now that is helping me along more these days. Why? How?

I was living my life, being an over-achiever, free-spirit, planner, optimist, perfectionist, social butterfly, spontaneous young person (yes all of those things at once). And boom: gimpy girl, doctors are your new BFF’s, your plans are a joke, and spontaneity is only reserved for your malfunctioning body. Adult life had just begun. The pieces had just fallen into place when they shattered apart so suddenly. I had so much fear about the future. Between all of the doctors ensuring me what a dim future I would have added to the horror stories I would read online, plus my own excruciating pain- equaled a young person very ill equipped to emotionally handle the fallout.

In the beginning, when I happened upon my first story of a child going through the same thing I was, I couldn’t help but draw strength from it. Knowing a child was in so much terrible pain every day, and still going to school and trying to walk or play- had me reconsider my own desperation. In all the times I was so ready to give up, there were definitely moments I would look up stories of children with the same pain disorder and remind myself that they don’t even realize they can check out. They just have to be strong- so they are. Because I’m in the same fight, I should also be strong beside them. Maybe you think it’s perverse, but it helped me. It helps me.

[One note: Others’ suffering does not negate one’s own trials and battles in life. Hopefully though, it can help us gain better perspective. We still must face our own pain intimately. A million other people in pain does not lessen my own struggle or yours. I just want to clarify that is not what I’m saying.]

It wasn’t until more recently, a few years ago when a myriad of other conditions floated my way, including a nasty one called POTS that changed my thoughts even more-so…

Even though I personally became chronically ill at 22 and then bedbound at 28, it is very common for young women of 16 to get POTS, unfortunately. There are teen girls at home and in hospitals all over the world hardly able to stand or sit up wondering what kind of future they will have. These young women are my heroes. Not only have they been teaching me how to better manage my condition using food, technology, and lifestyle choices, they also teach me through their attitudes. They keep pushing, keep trying, and they never give up hope.

When my POTS began something clicked for me. Even though my POTS entered my life with so many other conditions and more pain, making me more debilitated than ever, I’ve felt less grief for all I’m missing out on in life. It opened my eyes to how much I had done from 16 to 22 when my first chronic illness set in. In those 6 years, I finished high school, worked several jobs, had been in love, traveled the entire country, I learned how to do so many things with my hands, I used my body to go on many exciting adventures, and made amazing memories with my friends. I found the love of my life, lived independently, got married, bought a house, started college, and got the opportunity to spend quality time with my family.

For a very long time, I looked back at my life and memories and thought it wasn’t enough. I couldn’t even look at a old pictures without the memories crushing my heart- so I didn’t. It was like losing a loved one; losing myself. But if I can appreciate from 16 to 22, then I can appreciate all of it. What about the children whose illness inhibits their freedoms in life from a very young age? It changes the way I look back. Now I can look back at my memories and pictures and say, “Wow, I’m so blessed! God really allowed me to do so much!” Instead of, “I wish life could be as good as it used to be.”

Being thankful changes everything. Focusing on gratitude takes work though. And I have to avoid that which spirals me into my darkness. If you are toward the beginning of your journey, I don’t believe that mourning the loss of your life is negative. It’s an appropriate response and grieving is a valuable part of the illness journey. It has just taken me a long time to get here, and I have required a great deal of grace to find my way. Blessings to you on your own path.

 

“And I said, This is my infirmity: but I will remember the years of the right hand of the most High. I will remember the works of the Lord: surely I will remember thy wonders of old. I will meditate also of all thy work, and talk of thy doings.” -Psalm 77:10-12

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Thank you to Mitzi Sato-Wiuff at Aurora Wings on Etsy for allowing her very special original Skull Image to be featured here. Please go check out her shops linked below and purchase one of her awesome prints or instant downloads as a gift for the holidays!

www.aurorawings.com

www.etsy.com/shop/AuroraWings

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