I’m Still Here. I’m Still Standing.

Please be patient with me. This post may be jumbled and hard to follow, but, for the first time in a VERY long time, I’m reaching out to all of you. Usually, I write to help those who need it. Either by writing a topic one of you have requested, or something I feel might be what you need to hear.

This has hit me hard. It’s taken me this long to even begin talking about it, even with those I trust completely.

I recently found out my Grandma, who pretty much raised me, has 3-6 months left to live and they aren’t doing any treatments again. I know I’ve had her for way longer than most I know that have had cancer, but I’m not ready to lose her 😭

With everything going on these last few days, I feel like I’m losing my mind. BUT, I’m still standing. I’ve got an amazing support system of my boyfriend and his family; as well as support from those in my family, which I didn’t feel like I had before. I did. I know that. I guess I just didn’t feel like they’d want to ‘deal with me” and all my issues. Stupid, I know. They’ve told me they are always here for me and that I shouldn’t worry that they don’t support me, because they do.I’ve been through so much in my 25 years of life. Unimaginable, horrible things. I’ve also been through some things that, at first, shattered me emotionally, mentally, even physically. Some days I didn’t think I could go on. Didn’t want to. But I did. I managed to pick myself up, and keep moving forward.

Eventually, I even began sharing my story through blogging, with the hope that maybe what I had to say could help someone else, even just for a minute. The responses came slow at first, but now almost 8 years later, I’m still getting emails, messages, comments, about how my writing, my blog, has helped so many. That’s why I do it. NOT for fame. NOT for money. NOT to be ‘trending or popular’. Because all I’ve ever wanted is to help others.

#lunatunes #supportdog #family #emotionalsupport #familysupport #stillhere #emotionalbattles

Now is where I admit to all of you, I’m struggling badly with this and could use all the support and love I can get to help me through this.

A message, a comment, a silly image to make me laugh. Anything to help me deal with this.

I’m one of those people who always put others first, who hates asking for help; but I need your help. I need support to get me through this. So here I am. Saying please help me. Please.

What I Wish Someone Had Told Me About Grief

43719848_905136553020489_1028161071254339584_o_90513654968715634308611_810823532451792_3052487970855583744_o_810823525785126Today marks 1 year without my best friend Ty. We clicked right away upon meeting each other for the first time. Our mutual friend introduced us, knowing that having someone who understands the challenges that come with being diagnosed with a chronic or invisible illness can be a little easier to deal with if you have support.

In 2012 I was diagnosed with Interstitial Cystitis (IC), Endometriosis and PFDShe had EDS and POTS

This list is some things I wish someone had told me, what I’ve learned as well as some things from a few other contributors.

  1. No matter how prepared you think you are for a death, you can never be fully prepared for the loss and the grief.
  2. You can plan for death, but death does not always comply with our wishes or plans.
  3. Dying is not like you see on TV or in the movies.  It is not peaceful or prepared.  You may not have a spiritual or meaningful moment . . . It’s too real
  4. There will be pressure from others to move on, even minutes or hours after a death, and this can lead to regrets or resentment.
  5. Death is not an emergency – there is always time to step back and take a moment to say goodbye
  6. Death and grief make people uncomfortable, so be prepared for awkward encounters.
  7. You will plan the funeral while in a haze.  If you aren’t happy with the funeral you had, have another memorial service later.
  8. When people offer support, take them up on it.
  9. People will bring you food because they don’t know what else to do. Don’t feel bad throwing it away.
  10. People will say stupid, hurtful things without even realizing it.
  11. People will tell you things that aren’t true about your grief.
  12. Death brings out the best and the worst in families, so be prepared.
  13. There is no such thing as closure.
  14. There is no timeline for grieving. You can’t rush it. You will grieve, in some form, forever.
  15. There will always be regrets. No matter how much time you had, you’ll always want more.
  16. Guilt is a normal part of grief.
  17. Anger is normal part of grief.
  18. The pain of a loss is a reflection of love, but you never regret loving as hard as you can.
  19. Grief can make you question your faith.
  20. Grief doesn’t come in 5 neat stages. Grief is messy and confusing
  21. Grief makes you feel like you are going crazy.
  22. Grief can make you question your life, your purpose, and your goals. And that isn’t always a bad thing.
  23. We all grieve differently, which can create strain and confusion between family members and friends.
  24. However badly you think it is going to hurt, it is going to be a million times worse.
  25. You may find comfort in very unexpected places.
  26. The last 24 hours of their lives will replay over and over in your mind.
  27. It’s sometimes necessary to seek out new ways to grieve on your own, find new guidance if the people who are supposed to be supportive simply haven’t learned how.
  28. You grieve your past, present, and future with that person.
  29. You dread each anniversary, birthday, occasion without that person.
  30. They say the first year is hardest; but in reality, its all hard. First anniversary, first birthday, first time going to a place you shared without them.

Is there something you would add to the list that isn’t already on the list? Let me know in the comments!

Coming April 20th

Go and explore the world.

In Memory Of…

*Trigger warning!* Post contains a  sensitive topic such as suicide.

 

 

 


In the last few years, we have lost so many amazing people of all ages to illnesses, addiction, accidents, and yet its the recent ones who have been hitting me right where it hurts.

The whole Spoonies community has been crumbling with grief for those who, for any number of reasons, can’t handle the pain, illness, doctors, and the only choice they have left is to br pain Free forever.

The word no one wants to say. The word one one dares to think some days. Suicide.

We have lost way too many in just the last few months and it breaks my heart.

I’ve been there. But that’s for another post. Just know I get it. I understand.

Coming March 8th

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Surviving The Holidays After Losing A Loved One

Near the end of April earlier this year, I lost my best friend, Ty to a heart attack. She was 26 years old. She had POTS and EDS and we spent a lot of time having the same conversation over and over between the two of us.

She had been sick for a very long time before I met her and got my own illnesses: Interstitial Cystitis, Endometriosis, and Pelvic Floor Dysfunction.

Being sick in general is tough, but finding out you have a chronic illness(es) that, for the foreseeable future, have no cure, makes it that much harder. But when you find someone who understands that sick part of you, as well as accepting you for exactly who you are, you have a friend for life. We have spent more hours than I can count being there for each other, being supportive of each other and our limitations.

  1. Take the time to learn a new hobby or try and improve on a hobby you already have. This has been such a good Coping skill for me. It allows me to get better with my hobbies such as my jewelry making, and if I manage to pick up a new hobby, it takes up a significant length of time to learn all I need too and what things work best for me.
  2. Not long after Ty passed away, I knew I had to do something different, otherwise I would become too comfortable in the rut I allowed myself to get stuck in. I have been a writer for as long as I can remember and I have an easier time working through difficult parts of my life when I put the pen to paper and ‘word vomit’ all of the thoughts and emotions in my head, in no particular order and more often then not, it ends up reading like a huge jumbled mess. But, for me, that helps. So one day I picked up a journal and started writing letters to her, trying to make sense of all that was going on.
  3. Surround yourself with friends and family. It has made a big difference, knowing I don’t have to talk about it. I can just be. I don’t have to be alone.
  4. On the days you find yourself really struggling, try and spend even just a few minutes doing something for someone else. About this time last year, I had just finished creating Ty’s Christmas gift-35 Open When Letters. In the last few days, I have felt the need to do something for someone else, namely my sister who will be graduating at the end of the current school year. So, as part of her upcoming graduation present, I’ve decided to do her own personal Open When letters. If I am unable to be there for her graduation, she can still know I’m thinking about her on that day.
  5. Do something that will help you remember them, but don’t get stuck in the rut like in the past. One of our favorite things to do together when neither of us had much energy, was watch Invader Zim over and over. Her amazing fur baby service dogs name is Gir from the show. I’ve started re watching that show recently.
  6. Set reasonable expectations for how you want this holiday to go, but avoid keeping yourself too busy that you end up pushing yourself too far.
  7. Create a new holiday tradition to accommodate your recent loss.
  8. Light a candle in memory of your loved one.
  9. Ask for, and accept help. As difficult as letting your walls come down enough to admit you can’t deal with the loss alone is, sometimes that can be a step forward in dealing with the loss.
  10. Stop making comparisons between how the holidays used to be and how they have changed forever. Don’t put yourself down by saying things like “I should be doing____”, “_____ would want…,” and just allow yourself to feel your emotions. Don’t try and stuff them all away so you can have a ‘normal’ holiday with friends and family. No one greives the same way, same length of time. Just take care of yourself the best you can.
  11. Don’t allow others opinions dictate how the holidays will go. If you can’t bring yourself to act cheerful and ‘normal’ that’s okay.
  12. No matter how you feel, keep the lines of communication open with friends and family.
  13. Go at your own pace. Do not feel like you have to do what you’ve done during the holidays in the past. Start small. Baby steps.
  14. Have a plan B. If the holidays get to be too much, give yourself permission to change the plan as many times as you need.
  15. Give yourself time through the holidays to take a few minutes and listen to music, journal, draw, etc.
  16. Take a deep breath. In, out. Repeat.
  17. Take a few minutes and reminisce about your loved one.
  18. Create/buy a new decoration as a one time thing or as a yearly project. This is what I chose to do as a way to remember her. A memorial plaque, pictures of us, and a large stock of candles that I light every night, even for just a few minutes.
  19. Consider seeking professional help. Like with writing all your thoughts down, speaking the words out loud can also be helpful.
  20. Visit a favorite place of your loved ones. Let your emotions out.
  21. Ask friends and family to respect how you want to celebrate, or even if you don’t want to celebrate at all. Don’t allow others to make you feel guilty for how you choose to grieve.
  22. Create a mood playlist. Sometimes blasting music can temporarily distract your thoughts from spinning in circles.

Is there something else you would add to this list? Let us know in the comments!

Coming December 14th!

Happy Birthday..?

I have so much to say but I can’t seem to find the right words although I’m pretty sure there are no ‘right’ words for a situation like this.

So for now, Just know I miss you, and Happy Birthday Ty ❤

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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.”

Remember

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