Monthly Archives: September 2015

IIW15 Post: Every heart has a rhythm, let yours beat out so loudly that everyone can hear it

The start of invisible illness week 2015. This a great way to kick off the week. I’ll Write some of my own stuff later this week.
sparkle sparkle xoxoxo

Undiagnosed Warrior

WELCOME TO THE START OF

INVISIBLE ILLNESS WEEK 2015

This week is so important to  the chronic illness community because many of us often have symptoms that are not easily seen.

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Being chronically ill is difficult for anyone but when you have an invisible illness, there are additional challenges.

It’s not the symptoms we experience every day or the fact that we may never get better:

It’s having to convince those around you that you are actually sick.

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what is an invisible illness?

An invisible illness is any condition whose symptoms are not easily seen by others, including both physical and mental disabilities. Invisible illnesses can differ substantially in severity and disability, as well as from person to person. Despite the differences between the symptoms and effects of these illnesses, those with an invisible illness do have one important thing in common: We all know what it’s like to be judged.

Before…

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Contemplation of well…Everything

“The world keeps spinning, and the tales keep turning, and people come and people go, but they’re never forgotten. And the one truth we know, it held true one more time… That love, true love, the really, really good kind of love never dies.” – The Book of Life

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I am lucky, lucky that I have kids that let me see movies through their eyes. One child who has the eyes of faerie light, magic and wonderment no matter what the movie is. She keeps my heart light and my mind creative. One child who has a mind that never stops, figuring things out before they happen. He keeps me on my toes with ideas and my mind sharp.

We have more than once watched this movie and every time, we have found something new to love about it, whether is be the details on the guitar to a new quote, it is such a well-done movie. Today I woke up towards the end. My self-sufficient kids let me sleep in as I have not been feeling great these days. I couldn’t find the quote I was looking for to start this entry with but this one seems to work just as well.

I have had a lot of thoughts lately, thoughts I can’t describe because I can’t understand them myself. It goes from high to low so quickly I feel like I am doing every single dance you can think of that my brain has sorted itself out. I know one thing that has crossed my mind, It is a sad and happy thought. It seems that ever since I miscarried all of my friends have gotten pregnant, my friends and my family (the ones that I am close to at least). And I am happy for them, I swear it, but it hurts. It’s the really good love, but no one says that really good love doesn’t hurt some of the time.

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I wish I Knew what was holding me back from doing things that made me happy but I don’t. Charming says its depression, which it probably is. But there is something else, I look at myself and just want to give up. I hink about a year ago and I was self-confident 100 pounds lighter and happy with myself. And now I have a wonderful man, two glorious children, two classes to go to a diploma and I just lost myself somewhere.

I am filled with that really good love, and I know I am surrounded by it, but I lost myself somewhere. Somewhere in between stretching to help everyone else and losing focus on my own goals.

I started writing my books, but I have nothing to say, the characters went quiet. I started taking pictures but I have no urge. I just feel lost. I want to grasp onto  that really good love and let it fill me up…but for some reason I still tell myself I don’t deserve it.

Love how this post went from happy to sad.

with that I will stop talking

Shaye

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Mesothelioma Awareness Day

You would think that asbestos would be banned in the US, but it is not. Lets take today to celebrate the survivors, the fighters and those who have passed due to this horrible disease.

Undiagnosed Warrior

What if you were told you only have 300 days to live?

Unfortunately, those are the odds given to the victims diagnosed with Mesothelioma.

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Today, September 26th, is Mesothelioma Awareness Day

and I want to share a story with you.

Not too long ago, I received an email from Heather Von St. James asking for support in helping to spread awareness to this condition. While I had heard of Mesothelioma before, I honestly didn’t know that much about it other than what I’ve seen on those late-night commercials about hiring a lawyer for those asbestos lawsuits. I hate to admit it, but I never gave it a second thought once the commercials were over. Needless-to-say, when I read Heather’s story, I felt pretty lousy about my ignorance.

Often, I talk about the strength and courage it takes to live with a chronic illness. While most people don’t associate cancer as being a chronic…

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Maybe Dumbledore Isn’t Always Right – Rebecca Ethington

One of my favorite authors and closest friends posted this on Facebook a few days ago. I found it so profound, and you don’t usually find stuff like that on FB anymore. It summed up so many things, what ifs and lonliness, bullying, and just not knowing when to reach out and help someone or when to ask for help for yourself.

Never be afraid to reach out and help those in need, never be quick to judge because you never know what that woman behind that mask or the man behind the curtain are really like. Sometimes it isn’t east to click your heels together three times, sometimes their is no faerie godmothers. But there is always you, and that is good enough for me.

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“There is a scene in the final Harry Potter where Harry and Dumbledore meet at a place between life and death, and in that space they see a piece of Voldemort’s soul – this quivering, whimpering, ugly child, shoved underneath a bench.
And Harry, tries to go to it, convinced it needs help. And Dumbledore tells him not too.
I’ve always hated Dumbledore for that. Yes, Voldemort is evil, did he probably deserve what’s coming to him – yes. And I am in no way comparing myself to that quivering whimpering child, hidden away in pain.
But we have all been there.
We have all been so full of loss and heartbreak, and agonizing defeat, and sadness, and rejection. That we have all been there.
We have been that forgotten child in the corner, a deep part of us just shaking and crying and desperately hoping that someone would just come over and pull us out of the dark and hold us while we cry and comfort us until it all goes away.
I know I have.
And chances are, when you are there, you don’t know how to ask, or maybe you don’t have anyone to turn to anymore. You are alone, and you can hear people talking on a bench and your crying out for help, but they don’t come to find you.
So take this with a grain of salt. But you know those “whiny” posts everyone complains about on Facebook? Yes, some of them are just negative people. But what if some of them… just maybe… where people so lost and alone and scared and so desperate for help that they are asking for help the only way they know how. That maybe they just need that hug, or that phone call with a real voice.
I can’t believe I’m going to say this… but maybe sometimes we shouldn’t listen to Dumbledore. Because maybe sometimes they need our help, our compassion, our empathy and our love. Don’t be afraid to reach out – because people are people – but they are also human. And in this crazy world, we can’t do it all on our own.” – Rebecca Ethington

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Suicide.

This is a topic that is very close to my heart. Know that you are worth it and we love you. There is places out there you can go and people who won’t judge only listen.

You are worthy of life

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September is Suicide Awareness Month – a cause that is very close to my heart, as I have struggled with suicidal ideation/tendencies/attempts since I was younger.

If you or someone you know is struggling with thoughts of suicide please get help at 1-800-273-8255.

Suicide is a tricky thing to understand; so many people misunderstand it as a weak move, when in reality the person who is suicidal is fighting their hardest to stay alive…

I can only speak from my experience, and I know that the times that I have felt suicidal I felt completely gone from existence. I fought so hard to fight those disillusioned thoughts, trying to make some connection to keep me from leaving but honestly when you’re in that mind set your mind is the last thing to help you stay alive.

That is why it’s so important for other people to take the signs of…

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Invisible Illness Week and Updates

UTGOG is also going to be doing lots of stuff for Invisible Awareness week. If anyone has a story to share I would love to post it up!!!

Undiagnosed Warrior

It’s almost here!

September 28-Oct 4, 2015 is Invisible Illness Awareness Week.

2015’s theme is MY INVISIBLE FIGHT.

Your fight is noticed. You are seen. You matter. And someone knows how hard you are trying.

When we fight daily, silently, without any signs of our battle it can be exhausting. Join others who also battle invisible illnesses and increase awareness at the same time.

This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including some chat sessions with special guests.

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.

I’ll be sharing My Invisible Fight. 

Will you?

In addition to blogging, the Undiagnosed Warrior Facebook Page will be filled with even more fun, including updates, shares, pictures, stories, and more. To join, follow me at https://www.facebook.com/undiagnosedwarrior.

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For…

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Don’t give up on me

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That is ALL I wanted to hear from my doctor. Ok that’s a lie. I would have loved for him to say, ok I screwed up you are still in the program. But I knew when he came in that room it was going to be a tough conversation. I know I was defensive and Charming was my rock during the discussion.

What it came down to was the psychologist thought that I relied on doctors too much and that I seemed to think that getting surgery was going to magic away all of my problems. what the WHAT? It killed me to hear that, and I didn’t mean to dissect the Doc but I was hurt and pissed and trying not to cry.

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I’m sorry I have 5 autoimmune diseases one of which needs to be treated by antibiotics every time I get sick. And not once did I every say surgery was magic, EVER. It is a tool to keep fighting for what I need. I have an issue losing weight and the sleeve is a tool to help me.

I know the Doc understood, and he asked the inevitable question. Can you get back to the weight you were when you first came in? He meant pre lap band. I said yes, I have no doubt. He said ok, well I am not giving up on you. I will talk to the team, tell them what we discussed and see what they think. I will talk to you in a month. That all I needed to hear. *Deep breath* from 327 to 283. With Fibro…in 30 days.

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That’s the challenge

Think I can do it?

I can

Sparkle thoughts

Shaye

We Have Apples

So there is this wonderful mental illness blog that I follow by Rachel Griffin called We Have Apples. A little bit ago she had put up a post asking for pictures, both uplifting and at our times of trouble to put in a music video for a project she is doing. Let me give it to yo in her own words (it pasting it from her site)

“As a lot of you know, I’m a singer/songwriter in New York City with a fabulous life…. and a mental illness! (the two can go together! And errr.. it wasn’t always that way! LOL) I am so passionate about mental health awareness, ending the stigma, and connecting with other warriors like you! I am also writing a musical about these topics.More about the mental health musical I’m writing, We Have Apples, can be found on the website. You can also hear songs there. (But the song for this video is not released, yet- You’ll be the first to hear it, though!) If you want, you can sign up for the show’s mailing list to be kept posted on the development!:)

I was just selected as a Dramatists Guild Fellow, which means this year I will be working on developing We Have Apples with Broadway professionals!

More about my career as a singer/songwriter at: Rachel Griffin Website. This info I’m giving is not because I want to brag, but I want to tell you a little about my career so you know this song and video we are going to make will be high quality and could do very well! 🙂 I’ve won two National songwriting contests, recently wrote a song for an internal Macy’s campaign, and I have a publishing deal for a few of my pop songs.”

Well I participated in this as mental health is a very important subject to me….Obviously. I am keeping my fingers crossed that I will get to work it Rachel in the future. But here it is…..My debut in a music video….Pass and share it is so important!!!!

When is a Flare More Than a Flare?

I never have the right words to explain my disappearance due to flares or what flares feel like. Considering I have quite a number of invisible illnesses I think this wondrous post can explain it for me!

Wear, Tear, & Care

I’m writing this while wearing my neck TENS unit that also has electrodes snaking down to my shoulders. I have been in a pain flare for weeks. We are talking days upon days of pure, undiluted flare. I can’t remember the last time I felt this rocky for so long.

Visual representation of how ragtag I feel. Visual representation of how ragtag I feel.

My absence from this blog has been spent just trying to get through the work day without being crushed by my own body. I broke down and took the heavy medications I save for truly bad days, and they did nothing to relieve the pressure. All three levels of my spine are throbbing with different ailments: tension and shooting pain in my neck, head, and shoulders; pulsing rib pain around my trunk; and rickety bones setting off sciatic jolts in my hips and legs. Is it the heat? The constantly-changing weather? The humidity? Work stress? Sitting for…

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10 Reasons Why You Need To Stop Stigmatizing People With Mental Illness

Rachel hits the nail on the head when it omes to the stigma against the mentally ill. I have never read something more straight forward and honest.

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I normally post online about Muppets, coffee, musicals and cats, (not Cats the musical, the furry-animal-kind) but recently all I’ve been posting about is the Kenneth Cole billboard that links mental illness and gun violence. Why? #1 Because it perpetuates mental illness stigma. #2 The effects of that stigma are devastating.

Yes, I am now on a tireless quest to get people to understand why the billboard basically ate my soul when I saw it. CRUNCH! Don’t worry- I recovered my soul, undamaged. Souls are really durable.

I posted a blog critiquing the billboard on Facebook which was mostly ignored.. (got maybe 2 likes) I’ve had friends say, “What’s wrong with the billboard again?” I got 318 likes on another post.. but that one was about my hair. :/

Believe me, I miss my tweets about Kermit and the keyboard cat, too, but for now I need to focus…

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