30 Day Chronic Illness Blogging Challenge: Day 16

Day 16: What is your favorite inspirational quote?

There are many quotes I love that have helped in many situations. I’ve even begun to make my own.

Two of my favorite quotes are ‘Its funny how day by day nothing changes; but when you look back, everything has changed.” And “A semicolon is used when the author could have ended the sentence; but chose not too. The author is you and the story is your life.”

You can check out more of my quotes HERE

30 Day Chronic Illness Blogging Challenge: Day 10

Day 10: What little things makes your life easier?

There are so many little things that make my life easier with 3 incurable but non fatal chronic illnesses, but for now, I just want to share the two things that have helped above all else.

When I first began my ‘journey’ to find answers as to why I was suddenly so sick I couldn’t even get out of bed, I began blogging as a way to work through all the emotions I was feeling, as well as to maybe find others in my same situation. Best decision I made, although a uncomfortable one at first. I was and am a huge writer, and I have dozens of books filled with my words. But I had never up till that point shared the details of my personal life online.

I knew I had to do something to help me deal with everything that was happening. I couldn’t keep it bottled up inside and hope to come out unscarred emotionally.

So I started my blog, and the responses, while slow at first, rapidly became more and more. Others sharing their stories, stories of others they know or heard about, opinions and questions all for them, these strangers, to do what they could to help me find answers.

It still makes me emotional when I think about it. I never would have thought perfect strangers would actually try and help me. But I’m beyond glad they did. It helped me find answers, but most of all, it helped me deal with all I was feeling and having someone who’s there for you, even if they don’t have any sort of Chronic illness, is such a blessing. Someone to remind you that you are human. That your emotions and feelings are valid and natural.

Some of the best friends I have ever known I’ve never met face to face. Endless video chats and emails, yes.

I have a HUGE ‘unbiological family’ scattered all over the world, not just the US. Sharing my story was the best decision I have ever made. It forced me out of my comfort zone, to be vulnerable, to reach out to the nameless people online for support and answers.

Now, almost 7 years later, I’m still receiving emails from people asking how I’m doing and if there’s anything they can do to help. Even more shocking, at least from my perspective, I still receive countless emails, chats, phone calls from my followers and people who came across my blog one way or another telling me how much my writing has helped them. How they hope I never stop writing.

I have always loved to write, even as a young child. But it never occurred to me that my writing was actually going to help others. That by putting words on paper, (or in my case, online) I could inspire someone I don’t even know.

I always thought there was never going to be anything good about getting sick, getting on disability, unable to work, losing countless friends and family due to my illnesses and all that comes with it. But I’m so proud to say I was wrong.

You may have come across a page on my blog called Quotes By Me. After my ‘Journey’ began and I had to fill up every single day with anything just to prevent me from going crazy. I began making custom quotes, at first just ones I love. Then some for different situations (Dealing with life, loss, friendship, etc.) I began receiving requests for a specific quote someone wanted to see me make for them.

That has been an amazing idea that I wanted to see if I could push myself further. So I then began to make Spoonie Thoughts And Advice, Movie Quotes, and Song Lyric quotes. I am still in the process of adding more catagories, as well as adding them to my blog.

Keep checking back for new content in each category. Please don’t hesitate to contact me if you have something you’d like me to make, or even if you just need to rant and I listen without judgement. I only give advice if someone asks for it. Otherwise I just listen.

My contact information can be found on my ‘About Us‘ page under Karley Kay. My email and Facebook are usually the ones most people use to reach out to me.

If you reach out to me, I will always reach back to you. You’re not alone. You matter. Always. Don’t ever let someone tell you differently. You got this. I believe in you.

Claire Wineland, Inspirational Speaker And Social Media Star, Dies One Week After Lung Transplant

By Jessica Ravitz

Cystic fibrosis did not define Claire Wineland. She did.

No matter the obstacles placed in front of her, of which there were many, she refused to be pitied and was determined to live a life that mattered. She inspired countless people, invited — no, demanded — honest talk about illness and mortality, and brightened the worlds of those she touched with her smile, spunk and spirit.

On Sunday evening, after being taken off life support and using the newly transplanted lungs she received just one week earlier, Claire took her last breath. The cause of death was a massive stroke she suffered soon after the transplant surgery. She was 21.

‘Love what is’

A quarter of Claire’s life was spent in the hospital. The medical team that tended to her became family. She played hide-and-seek with nurses and left explosions of glitter in her wake. She watched one of her doctors squirm as he gave her the safe-sex talk. She took great care to decorate her hospital room so it felt and looked like home.

Related Article: She expected to die young. Then came the call that offered new life

Her parents, Melissa Nordquist Yeager and John Wineland, split up when Claire was 3, but they remained friends and partners in her care.

Her father credits Claire with teaching him “to not be afraid of what hasn’t happened yet” and to learn to “love what is.”

Yeager, who lost and quit jobs as hospital stays dictated, always marveled at her daughter’s aura and her ability to lift up those around her.

In 2017, Yeager recalled a conversation with Claire about death. At one point, Claire looked at her mom and said, “After you die, you’re closer to everyone you love because you’re part of everything,” Yeager remembered.

These words were a gift, a reminder that Claire would remain with her always, even after she was gone.

Trusting Claire

More than 30,000 people in the United States, more than 70,000 worldwide, have cystic fibrosis, according to the Cystic Fibrosis Foundation. The median survival age is 40, the foundation reports, which is a great improvement from the 1950s, when surviving long enough to attend elementary school was rare.

Claire Wineland spent a quarter of her life in the hospital.

The genetic and progressive disease creates an overabundance of mucus, which traps infections and blocks airways in the lungs. It also complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure.

There is no cure, but dutiful breathing treatments — which eat up hours each day — can help with symptoms and complications. A double-lung transplant, when successful, can add years to a patient’s life.

Claire’s parents learned to trust their independent and strong-willed daughter. When it came to her care, she knew her body best — what worked for her, what didn’t and how far she was willing to go.

So when she became a legal adult and told them she had no intention of getting a double-lung transplant, they had to accept her decision, even if it pained them.

“I had to be honest,” she once explained. “It’s not for me and never has been.”

A change of heart

Claire took the gift of life and her health seriously, but she didn’t take herself too seriously. She once escaped from the hospital so she could attend a Bernie Sanders rally. She laughed at the absurdities that often swirled around her, including those moments in the produce aisle at Whole Foods when shoppers would prescribe her unsolicited “cures,” telling her to eat more pineapple or that a mushroom cleanse would take care of everything.

Claire Wineland’s greatest wish, her mother said, was that “her foundation will live on, even in her absence.”

She was of the mind that she would leave this world with the body she came in with. She’d travel, answer calls for speaking engagements and put energy into her foundation, which she set up at age 13 after coming out of a 16-day medically induced coma. She’d work on a book — promising it wouldn’t be “another happy sick person book” — and appreciate the small things like swims in the ocean for as long as she was able.

At a TEDx talk she gave last year, Claire made a point of saying how cystic fibrosis helped give her a quality of life.

“Life isn’t just about being happy. … It’s not about how you feel second to second,” she said. “It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given.”

Claire had a change of heart about transplant earlier this year, prompted by a steep decline in her health that robbed her of the energy and ability to do what gave her joy and purpose. She wasn’t done contributing. It was a welcome, albeit terrifying, development for those who loved her.

To get on the list for new lungs, she had to be sick enough to need them, yet strong enough to withstand the surgery and recovery. Some people worried that she’d waited too long and wouldn’t be given the chance at continued life.

But Claire took on the evaluation process to get on the list with laser focus. She sat in an educational meeting at UC San Diego Health’s transplant center and diligently took notes.

Revealed on her left ankle was a tattoo: the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy.”

She listened to the risks and the long list of side effects and emerged unfazed.

“None of it spooked me,” Claire said afterward. “Now that I’m looking at it as something I have to do … I’m willing to deal with anything.”

It’s a GO!!!’

In late May, she made the list and shared the exciting news with her social media followers who dot the globe. But then, a mix of health and life complications took a toll and knocked her off the list, temporarily. By mid-August, she was back on and feeling ready.

Claire and her mother beamed in a photo posted on social media after they learned her transplant was a go.

She’d worked hard to get there, was focused on her self-care and getting stronger. She joked that the squats she was doing, upon doctor’s orders, would help get her more than lungs. She’d also get a butt.

She knew that the call could come at any minute, and on August 26, it did.

“It’s a GO!!!” she posted on Twitter, not long before she was wheeled into the operating room in San Diego. “See y’all on [the] other side.”

The nine-hour surgery went well, and her mother reported that the lungs were working great. Yeager posted a video of herself doing a happy dance with friends in the waiting room.

But not long after the successful surgery, hope turned to fear. Claire suffered a stroke when a blood clot cut off blood flow to the right side of her brain. She never emerged from her medically induced coma. Despite emergency surgeries, and what her mother described as “Herculean efforts” to try to save her, the daughter she knew was gone. Given the severity of the stroke and Claire’s advance directive, it became clear that it was time to let her go. She passed away peacefully, with her parents by her side.

“They saw her into this world for her first breath and were with her for her last,” Laura McHolm, the board chair for Claire’s foundation, wrote in a Facebook post.

Less than 3% of lung transplant recipients have a stroke between the surgery and hospital discharge, according to the United Network for Organ Sharing, which operates the nation’s organ transplant system.

Claire, who understood the importance of organ donation, was a donor herself. On Monday afternoon, her mother received word that Claire had already made a difference.

“Claire was able to save the life of two people, her right kidney was transplanted to a 44 year old woman in San Diego, and her left kidney was transplanted to a 55 year old male in Northern California. Also, Claire’s corneas and tissue was recovered and she will be able to enhance the life of up to 50 people,” a family services specialist wrote to Yeager in an email message. “Claire’s gift is huge, I want your family to know that your daughter is a hero.”

The family intends to honor her memory by continuing to advance Claire’s Place Foundation, which she established to financially support others affected by her lifelong disease.

‘Go enjoy it’

In one of the last videos Claire posted, she went where she hadn’t before.

A self-described “goofball,” she usually engaged people with humor and optimism. This time, she was raw and allowed herself to cry. As she faced the prospect of getting a double-lung transplant, she understood how desperate she was to live — and give — more.

“It hurts everything inside of me to make this video,” she said into the camera. “I didn’t realize how much I didn’t expect to live this long. I didn’t expect to have a chance. … The years of telling myself I can do it on my own are over.”

She had plenty of emotional support, but she worried what transplant surgery might mean for her future and her parents’ future if it didn’t go well. What if they poured everything into her transplant, and she didn’t make it or was not able to work again, she explained later. She needed financial help. By asking for it, she said, she could relax and get in the headspace for whatever would come next.

Before signing off, Claire implored viewers to do one thing.

“Go enjoy your life. Really. I mean that seriously,” she said with her signature smile and laugh, her eyes not yet dry. “Go enjoy it, ’cause there are people fighting like hell for it.”

51 Powerful Quotes to Inspire Anyone Living with Chronic Illness

Quotes are powerful too. The right quote, seen at the right time, can change the direction of a person’s life. It can uplift us when we’re down and motivate us when we need a push. It can inspire us to be better, do better, and try harder.

Over the last few years, I’ve collected hundreds of inspirational quotes. But not all quotes are created equal.

Today, I give you the best of best: 51 inspirational quotes on life, chronic illness, adversity, pain, and hope.

The Quotes:

1) “She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.” – Ariana Dancu

2) “Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” – Glenn Schweitzer

3) “Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip Toe if you must, but take a step.” – Naeem Callaway

4) “I fight for my health every day in ways that most people don’t understand. I’m not lazy. I’m a warrior!” – unknown

5) “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.” – Mary Anne Radmacher

6) “When you have exhausted all possibilities, remember this: you haven’t.” – Thomas Edison

7) “You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.” – unknown

8) “Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think” – A. A. Milne

9) “Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” – Dale Carnegie

10) “When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible.” – Christopher Reeve

11) “You shouldn’t focus on why you can’t do something, which is what most people do. You should focus on why perhaps you can, and be one of the exceptions.” – Steve Case

12) “Regret for the things we have done will be tempered by time. It is regret for the things we did not do that is inconsolable.” – Sydney J. Harris

13) “Our greatest weakness lies in giving up. The most certain way to succeed is always to just try one more time.” – Thomas Edison

14) “Believe in yourself and all that you are. Know that there is something inside of you that is greater than any obstacle.” – Christian D. Larson

15) “Normality is a paved road. It’s comfortable to walk, but no flowers grow on it.” – Vincent Van Gogh

16) “The measure of who we are is what we do with what we have.” – Vince Lombardi

17) “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don’t give up.” – Anne Lamott

18) “You can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass.” – Timber Hawkeye

19) “We must accept finite disappointment, but never lose infinite hope.” – Martin Luther King Jr.

20) “You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws. You are wise when you learn from your mistakes.” – unknown

21) “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp

22) “The truth is we’re all a little bit broken. We must learn to love the broken pieces of ourselves – be gentle and empathetic with ourselves, and others.” – Karen Salmansohn

23) “It’s not selfish to love yourself, take care of yourself, and to make your happiness a priority.” – Mandy Hale

24) “Live to inspire, and one day people will say, because of you, I didn’t give up” – unknown

25) Hope doesn’t require a massive chain where heavy links of logic hold it together. A thin wire will do…just strong enough to get us through the night until the winds die down. – Charles R. Swindoll

26) “Nothing is more beautiful than a real smile that has struggled through tears.” – unknown

27) “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” – Martin Luther King Jr.

28) “So this is my life. And I want you to know that I am both happy and sad and I’m still trying to figure out how that could be.” – Stephen Chbosky

29) “I often say now I don’t have any choice whether or not I have Parkinson’s, but surrounding that non-choice is a million other choices that I can make.” – Michael J. Fox

30) “If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio

31) “Resting is not laziness, it’s medicine!” – Glenn Schweitzer

32) “Don’t forget you’re human. It’s okay to have a meltdown, just don’t unpack and live there. Cry it out and then refocus on where you are headed.” – unknown

33) Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can’t do it all, but you can do your best. – Doe Zantamata

34) “I can’t tell you when, but I can promise you it will get better, it will get easier, and it will all be worthwhile. Just promise me you won’t ever give up.” – unknown

35) “The strongest people I’ve met have not been given an easier life. They’ve learned to create strength and happiness from dark places.” – Kristen Butler

36) “Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.” – Hannah Brencher

37) “Please be patient with me. Sometimes when I’m quiet, it’s because I need to figure myself out. It’s not because I don’t want to talk. Sometimes there are no words for my thoughts.” – Kamla Bolaños

38) “Those you love will go through hard times. Don’t give up on them. Patience + Caring + Empathy = Love.” – unknown

39) “We are stronger in the places we have been broken.” – Ernest Hemingway

40) “Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” – Kelly Hemingway

41) “I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” – unknown

42) “At any given moment, you have the power to say this is not how my story is going to end.” – unknown

43) “Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place.” – Iain S. Thomas

44) “Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit.” – Napoleon Hill

45) “What would the hero of your life’s movie do right now? Do that!” – Joe Rogan

46) “Maybe it’s not always about trying to fix something that is broken. Maybe it’s about starting over and creating something better.” – unknown

47) “Do not believe the things you tell yourself when you’re sad and alone.” – unknown

48) “The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.” – unknown

49) “Life is either a daring adventure or nothing at all.” – Helen Keller

50) “Never let the things you cannot do prevent you from doing the things you can. ” – Coach John Wooden

51) “If you stumble, make it part of the dance.” – unknown

I Lied

Remember

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Obligated

As most of you know, I remake quotes as part of keeping myself busy and lately I have really appreciated having something ‘normal’, something fun that I choose to do. Something I didn’t feel ‘obligated’ to do.

Recently I got an email from an amazing fan who asked if I could make them this quote because this person is having a rough time trying to take care of themselves and at the same time trying to ‘blend in’ to normal society again. (Interrupting my own post to say if there’s a quote you’d like me to make, i do take requests) They can’t help but feel obligated to still try and do everything they did before they got sick or they were afraid someone very close to them would decide to leave if this person could not be ‘normal’ while dealing with a brand new life of Chronic Pain and Illnesses.

This person only recently joined in the ‘battle and journey’ of the world we know so well.

Being only recently diagnosed with Lupus has shattered this persons view of what is ‘normal’ and what is not.

Our ‘journey’ through our world of Chronic Illness is hard enough with a lot of support. This person however has almost no support at all.

I know what its like to feel like we have to not be who we truly are because we fear judgement and scorn. And even worse-we fear that those closest to us will decide sticking around for ‘the sick one’ is too much. Then they leave. It’s happened to me countless times in my now 6th year of this so called ‘journey’.

Sorry! This was originally just supposed to be an image post and the minimum few words that would explain it-not a long rant.

If you take away just two words from this rant, let them be “I’m Here” because I am. No matter your past, your illness, even if you’re not Chronically ill, color of your skin, your background, etc. None of that matters to me. None of it.

I promise; if you reach out to me like this brave person did-I will always be reaching back. No matter what.

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Reminder

No One

A follower sent this to me last night and I just had to share. What are your thoughts about this?

“No one really talks about what happens if you’re sick and you don’t get better but you don’t die either. You get to live in the margins because its either/or. You’re getting sick or you’re getting better. There’s no in between in our culture. No room for the Chronically Ill.”

Be Gentle