Tag Archive | chronic pain

When things fall apart❤

(Not my image)

“No one’s head aches when he is comforting another.”

In the beginning of December(the December that was just here like two seconds ago), I bought a book, at Book Traders, in Olde City, Philadelphia, “When Things Fall Apart,” by Pema Chodron. It’s a Buddhist book that can apply to everyone. It’s a guide for how to handle fear and other unpleasant emotions when things are difficult in life. I was currently not experiencing anything difficult when I saw the book on the shelf and for the most part do not have many struggles in life or anything too severe in general, and so was not inclined to buy it, even though it seems like a very good book, but felt drawn to it for some reason. I love self-help/personal development books even if they are not ones I really need(not that I “need” any self help books but if we struggle with a certain issue, books on that topic may be helpful). For example, books about general anxiety or self-esteem issues, I have never struggled with serious general anxiety or self esteem issues(other than sometimes when I would be very depressed – I was diagnosed many years ago with Major Depressive Disorder and have been suicidal for years but much better now) but often find that even they have inspiring, uplifting things that can apply to me or are just pleasant to read. I especially love Buddhist books. I only had a limited amount of money for the bookstore and wanted to use it wisely! I kept going back to it, feeling that “pull.”

So I bought this book even though things were looking up and not difficult for me then.

Not long after I bought the book, my world crumbled on top of me. Again. And I was shattered to pieces.

Shattered to pieces.

Shattered. To pieces.

I wondered if I would, could ever be put back together again.

I have these “headaches.” They are not frequent but are shattering. There is no effective treatment currently known for them. They’re like cluster headaches. The source of the pain is in my jaw, not actually my head. It feels like a throbbing toothache but way, way worse than that, along with severe burning pain on the one side of my face & head. Like a hot rod being driven through the eye-socket. Like scalding hot water running down the one side of my face, taking all my skin off with it. It can feel like broken glass moving around inside my face or like someone clawing at all the muscles/joints/inner skin/elastic tendon; they feel like an icepick going through my temple, like part of my head being sliced off….They ruin me.

The pain can come and go off and on for days until it goes away for good(then comes back maybe the next year or more or sometimes sooner). It usually happens at night more than during the day.

Ultimately/Generally, I do not mind that I have these headaches. They are excruciating but it is what it is and they are rare; I don’t get them often. Once in a blue moon. Usually during Winter months, especially in December. They last a few days then gone!

I was hit with a couple somewhat recently. Ouch! I havent had one this bad in so long, I forgot how to handle them and found myself wanting to scream and hit my face(this kind of pain can provoke us to have the overwhelming urge to hit our face/head or bang it against a wall – it’s an unfathomable level of pain). I used to scream all night when I would have them years ago til my throat was raw, I lost my voice, and my mouth tasted of blood. I can’t remain still with them. I have to pace constantly all night long into the morning. Wringing my hands, keeling over, sometimes. I have once stayed awake for four days & nights straight with them. Not one moment of sleep in 4 days & nights. This was many years ago.

It’s a nightmare.

Hell on Earth.

They devastate my entire existence. They are powerful.

When I have these headaches and shortly after they end and when I vividly remember them even if I havent recently experienced one, I am reminded of the suffering and potential suffering of all of the world, of all sentient life. My deep empathy is brought out even more deeply. My compassion is set on fire and I long to heal the whole world but in a good way, not a depressing, helpless feeling even though I cant heal the world as I do not have that power. Just the feeling of that kind of compassion for others is beautiful and inspiring. Just to be in that state. These headaches inspire that compassion even more deeply in me.

When I get these headaches I am so, so happy for everyone who does not have them. Everyone I look at anywhere I go, I think at least that person is not suffering with one of these. And it’s so beautiful. Always, that heals me to think I am so thankful it’s me and not them. I want to take on all the head pain (and any other kind of pain that exists) there is in this life so no one else ever has to experience it, even if it would make my own pain worse, sevenfold.

These headaches rip me open and I am stripped to the bone. All layers of various experiences pulled back and stripped away, discarded, disregarded, dismissed. Specifics no longer matter. Raw agony effecting something universal. It is beautiful. It is agonizing.

All my innermost wisdom, my deep knowing, rising to the surface and bleeding out onto the world like hot, hot, hot lava. My face burning and throbbing and aching, the pain pulsing & screaming & burning relentlessly. Ripping me apart. Tearing me to shreds. Burning. Screaming. Burning.

Cruelty like I have never known before.

Cruelty.

Cruelty.

Torture.

Cruelty.

I brace myself as I begin my descent back to some primitive state, something animalistic unleashed in me, losing all sense of reasoning, all conditioning, all knowledge of human language, as I want to scream like a wounded animal in the night who knows nothing but anguish. I have always felt that they reduce me to half the woman I am and chain me to a world where there is nothing but fear & pain, and myself, where I lay amid the ruin of a life that a mere few seconds ago was complete, whole, sane…then destroyed in a matter of seconds, without warning. Without warning, I am a wreck on the floor in the fetal position holding or hitting my face and head, confined to Hell. Screaming in my head. Without warning, I am roaming the night, like a hungry ghost, screaming for some relief that never seems to come. Without warning, there is just fear and pain and me. And agonized screams that taste like blood.

With these headaches, I come face to face with the primal connection we all share, the basic humanness, the sentience, the potential. The underneath. And it is beautiful. So beautiful. To experience ruin like this so deeply, is a gift.

With these headaches, I know insanity; I know addiction; I know homelessness; I know all physical & emotional ailments; I know loss of all sorts; I know hunger & poverty & war & ugliness. I know callousness. I know what it is to be a criminal, a thief, a traitor. A wild animal. With these headaches, I am the predator and I am the prey.

I don’t know all of these things on the surface as I have never experienced them all themselves but I am intimate with the underpinnings, the core, the soul of them.

Through these headaches, I know destruction; I know desperation, despair, agony; I know impulse, rawness, destitution, longing, fear. I know aggression. I know Sickness. Something primitive. I am reunited with the most ancient ancestors and everyone who has come before me since the world began.

I know something gutteral. I know ruin.

And through this, I also know tenderness, compassion, love, humility. Beauty. Empathy. Gentleness. Oneness. I know wholeness. I know complete strangers who I will never meet or lay eyes on. I know beings who haven’t yet come into the world.

There is something about the raw, unearthly pain of these hellish headaches that deeply humbles me and allows me to experience a deep, deep oneness with all sentient life in a kind of way that nothing else does. I experience that oneness anyway but these headaches allow me a deeper intimacy with it. To know it at a greater depth. They allow me the advantage of breadth of all experience.

I think of all sentient life, human, animal, insect, whoever else may be out there. I hear their agonized screams, their pleads, their cries, the misery, I taste the longing, and I want to calm it all, to love away the hurt, to bring warmth and love where there is cold & yearning. I want to dry the tears of all who cry.

I want to love, love, love until the fear runs out. Then love some more. I want to love until the pain burns itself out. Then love some more.

I want to sate all hunger & quench all thirst.

Because I know this pain, I know all pain.

I know all despair.

I know it well.

I know the darkness and I know the light.

This pain is rare; most will never experience it, but there is something universal about the underpinnings of it, the desperation it brings, the fear, the dread.

There is something ancient at play. Something we have all known since beginningless time. Something we know irrespective of our location in the world. Something that knows no borders or customs or culture. If we were all stripped of all our conditioning, our culture, our skin, our superficial experiences, all our appearances, we would be identical in this something.

We all know or have the capacity to know the underpinnings of all experience. We all know the raw pain of these headaches if we know any suffering or pain or fear at all.

Most of us have experienced or can experience some sort of fear, anxiety, desperation, concern, pain, anger, terror, loss, love…we don’t need these headaches to bring us those experiences. The headaches are a reminder. A gift.

All painful experiences are a gift in disguise. They give us the opportunity to rise above and evolve into something even better, to reach out into the uni-verse and love someone today, even a complete stranger. Painful, terrifying experiences may seem like a malicious enemy but they can really be a loving friend to us if only we let them. A friend who shows us “tough love” on the surface while ultimately allowing us to deeply know a warm, soft tenderness at the core of our suffering, at the core of all suffering. A tenderness so sweet & loving, so warm, so gentle but so fierce.

I read something in this book that seems to mirror my own experience here. I will share an excerpt:

“I once attended a lecture about a man’s spirtual experiences in India in the 1960s. He said he was determined to get rid of his negative emotions. He struggled against anger and lust; he struggled against laziness and pride. But mostly he wanted to get rid of his fear. His meditation teacher kept telling him to stop struggling, but he took that as just another way of explaining how to overcome his obstacles.
Finally the teacher sent him off to meditate in a tiny hut in the foothills. He shut the door and settled down to practice, and when it got dark he lit three small candles. Around midnight he heard a noise in the corner of the room, and in the darkness he saw a very large snake. It looked to him like a king cobra. It was right in front of him, swaying. All night he stayed totally alert, keeping his eyes on the snake. He was so afraid that he couldn’t move. There was just the snake and himself and fear.
Just before dawn the last candle went out, and he began to cry. He cried not in despair but from tenderness. He felt the longing of all the animals and people in the world; he knew their alienation and their struggle. All his meditation had been nothing but further separation and struggle. He accepted-really accepted wholeheartedly-that he was angry and jealous, that he resisted and struggled, and that he was afraid. He accepted that he was also precious beyond measure-wise and foolish, rich and poor, and totally unfathomable. He felt so much gratitude that in the total darkness he stood up, walked toward the snake, and bowed. Then he fell sound asleep on the floor. When he awoke, the snake was gone. He never knew if it was his imagination or if it had really been there, and it didn’t seem to matter. As he put it at the end of the lecture, that much intimacy with fear caused his dramas to collapse, and the world around him finally got through.” (pp. 3-4)

What a beautiful reminder of how, fundamentally, we are all the same. No matter what, we are all capable of suffering. We all gravitate towards relief, pleasure, happiness, comfort, life and all ultimately want to avoid fear, and pain, and suffering of any sort. We can use our own experiences with fear and/or pain to teach or remind us of compassion and empathy. Remember whatever we are experiencing, others are as well or already have or can experience it. We are not alone in our fear, pain, anger, suffering….and we can use it to deepen our love for all sentient life, let it bring us closer to the oneness that we all share, the humaness, the sentience.
Let it humble us and inspire us.
Let us be kind to all living beings. They are us. We are them.

Let us bow to the things that bring us so much fear & pain. They are our sacred Teachers. They are the bridges that lead us to each other. Let us bow before them in extreme gratitude and boundless reverence.

Here are two videos of young women experiencing headaches similar to the ones I have:

Cluster attack #1

Cluster attack #2

These videos are kind of “graphic.” The two women are screaming hysterically, uncontrollably, in unimaginable physical agony. It’s not an exaggeration or overreaction. It is literally impossible to exaggerate the pain of these attacks. It is so, so, so severe already, there is no way to exaggerate it. If you do not have earphones and there are people around, you may not want to click on the links with volume up. If you want to click on them at all.

They were diagnosed with Cluster Headache Disorder(CH), considered to be the worst pain known to medical science. Many women with them who have given birth, have said it’s worse than the pain of childbirth! Holy 💩!!

I was not diagnosed with this headache disorder but I have another disorder that mimics cluster headaches, migraine headaches, tension headaches, sinus headaches, and severe toothaches, and other kinds of pain. My disorder is not as bad as Cluster & Migraine disorder. My pain is less frequent & often less intense. But it does get so bad.

For Cluster Headache Disorder, breathing in oxygen through a machine can help with the pain sometimes. They themselves are not life threatening but many people become suicidal while having one of these headaches, not necessarily because of depression, but because the pain is so immense it’s hard to imagine living even another second with it. The one young woman is in a hospital participating in a trial thing if I understand correctly.

Wouldn’t you give anything to take their pain away? I would in a second take it all on myself if I could, to stop theirs. I find their suffering so unbearable. But it doesn’t depress me. It doesn’t drag me down. It motivates me to want to act on kindness in any way I can. It inspires in me a deeper love, a higher love.

Higher Love – Steve Winwood

“Think about it, there must be higher love
Down in the heart or hidden in the stars above
Without it, life is wasted time
Look inside your heart; I’ll look inside mine”

Also, I haven’t yet read the book in its entirety but what I have read up to now, is very inspiring, as you can well see!

He’s My Son -Mark Schultz

“I’m down on my knees again tonight.”

This is a song about a mom & a dad on the verge of losing a sick child to death. It’s a beautiful, warm, tender, gut-wrenching song. It guts me and leaves me hollow inside. I do not know their pain but the deep, desperation of the message and choice of words and the music has always reminded me of the pain/desperation of cluster headaches & similar pain. Of course, I think the struggle of having a sick child is way, way worse. But there is just something about the desperation here that resonates with me in a deep way.

When things fall apart, let us remember to take all the life lessons, the pain, the wisdom, the fear….and let it fuel us to reach out & love others.

Much love and light to you who is reading this. I wish you peace, love, & comfort. Joy, hope, and gratitude. Health & happiness, always.

Xoxo Kim❤

Under the hat

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“Push through anything that would stop you.”

http://www.puttingourheadstogether.com/

The month of June is considered Headache Disorder Awareness Month and this organization “Putting Our Heads Together” has an Under the Hat project to bring awareness to chronic head pain. On June 25th we were supposed to upload pics to social media of ourselves wearing a hat.

Mine is late but better late than never! 😉

Here is a youtube video created by a girl named, Anna, about head pain and pushing through it.

This Day- mobile

This Day – desktop
So inspiring! ❤

I don’t have migraine headaches but have another chronic headache disorder which is generally mild but flares up to seemingly unbearable levels and can be debilitating. It’s the stuff nightmares are made of.
I can have four kinds of headaches resembling sinus headache(this is the kind I experience in general), tension headache (least painful), migraine headache (second most painful but to me, the most debilitating usually), and cluster headache(most agonizing), and other kinds of facial pain.

There’s no known cure and not much effective treatment. Pain pills aren’t always prescribed by doctors to those with chronic pain and don’t really work anyway. And even if they work for some pain, it’s unfortunate to have to either live in agony or live all drugged up.

While mine is generally mild and I’m not always in pain, some have debilitating pain everyday or most days.

It’s so difficult to have to endure.

But we can learn to cope with this pain when it flares up and live with happiness and joy anyway. 😀

Some people with cluster headaches try to invalidate the pain of those with migraine headaches. Cluster headaches are considered by some doctors to be the worst head pain known to medical science and one of the worst kinds of pain known to medical science. They hurt worse than kidney stones. People who have experienced broken bones and childbirth have said it hurts worse than that. I have had kidney stones myself and can say, it does hurt worse.
I haven’t experienced broken bones or childbirth myself so can’t say for me but by the descriptions it does seem to hurt worse.

It feels like a hot poker being driven through the eye socket, like being severely burned, like our nerves being tweezed. I heard it described as feeling like a jagged edged saw rubbing over the nerves.
Yes, it feels like the worst hell on Earth. But just because it feels worse than a migraine headache doesn’t mean migraine headaches are not terrible. They are also a living hell.
And if someone only ever felt migraine pain and not cluster pain, those people don’t have the cluster pain to compare it to so to them migraine head pain is the worst. But some have felt both kinds of pain and both are horrible.

I believe no one’s pain should be invalidated and all deserve compassion.

To me, the cluster head pain is so bad it like makes it seem in a way, that everything else I ever considered pain is obliterated after I discovered this kind of pain. And when it’s flaring up, almost nothing else in the world matters to me and I don’t have a care in the world except that pain. But anyone suffering in any way is worthy of empathy and compassion. ❤

My love & compassion go out to all with a chronic pain disorder.

And here is a song with funny lyrics:

Big Ass Headache – Justin Moore – mobile

Big Ass Headache – desktop

“I feel like I’ve been rode hard and hung up wet
Swallowed by a mule and crapped off a cliff
I drank enough whiskey to fill up a lake
Woke up this morning with a big ass headache
Y’all I ain’t kidding this son of a bitch hurts
Where the hell are my pants must be with my shirt
I still got my boots on but make no mistake
They can’t help me kick this big ass headache”

lol!

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“because a migraine is NOT just a headache.”

https://clusterbusters.org/about-cluster-headache/

Much love & light to you,

❤ 😀

xoxo Kim

Headache

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“Well, I found you
Maybe you can help me
And I can help you” ~ Frank Black

I woke up with the absolute WORST headache today! I woke up with it throbbing violently. It’s not the kind that feels like a cluster headache (those are the very worst) but feels like a bad migraine headache, which is also very bad. It’s like a living hell today. Eww! This pain is disgusting, it just throbs and aches and pulses in certain places escalating on and off all in the back, around the eyes…

For a while I couldn’t even listen to music, the sound even of low, slow, soft songs, was too much, just pounding into my head and made the throbbing worse. I thought it would make it better! Even the gentle soft notes felt shrill and rough against my head. I had to lay in bed with my dogs for a while, covering my eyes to block out any light. 

My dog, Emmy, he’s so adorable, he knew something was wrong with me and he kept putting his paw lightly on my face and licking my eyes! What a sweet boy! And he has a skin allergy he gets in Summer & the beginning of Fall but he was still more concerned about my pain. ❤ He knows when I'm depressed or lonely too and he tries to nurse me back to health. 

This is him:

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Isn’t he cute?!?! He’s a purebred pompom.

Laying down made it worse sometimes but I also couldn’t stand or sit up so had to lay a certain way. I felt as if there was no way out, nowhere to go, nothing to do. It’s not the kind that contributes to me feeling the urge to scream or run or panic or like I’m going literally insane but I felt so trapped and it was hard to remain still but also to pace. 

I had to work tonight and only one person works each shift so it’s not always easy to get off at the last minute. My mom suggested I try to find a coworker to work for me and stay home. 

But I decided to go. I don’t really like annoying people at the last minute and also I thought maybe it would be helpful to not give in to the pain and just do what I always do, get up, go to work, be positive. Not ignore or deny it but not let it conquer me. It can get us to have to stay in bed or not go to work but we don’t have to let it drag us down emotionally as well.  Sometimes pain or sickness is just too much and we just really cannot even stand up or do anything. For a while this is how it felt but I decided to get up and push through it. It throbbed so badly and at some points I almost felt despair. I wasn’t unhappy though, just unhappy about the headache. 

My physical pain disorder can be like this sometimes. Fortunately it’s not often that I have severe flare ups this bad. 

Anyway, I forced myself to get up and go to work. First I forced myself to do neck stretches and massages to try to help the pain. At first it can make it worse til it makes it better. This doesn’t always work but sometimes works wonders.  Today it worked. My pain remained but not as bad. It takes courage and emotional strength to get up and move with a violently pounding head. 

At one point the pain was so bad I slid to the floor with my head in my hands writhing in agony. And in the middle of all this I still found things to smile about! 😀

I remember laughing as I attempted to pick myself up off the floor. I couldn’t help but feel a bit amused. 

In some ways I feel the physical pain is worse than the depression because it’s harder to handle, in my opinion. It’s louder and demands attention right then. Sometimes I cannot lay down or remain still or do much of anything but collapse and scream or pace. But in some ways physical pain can be better because with physical pain it can sometimes be easier to dissociate in a way, it can be easier to still feel like smiling and laughing. It can strengthen our will to survive while depression often saps all the desire to laugh and the will to live. Not always but often it tends to do that. Physical pain can definitely sap our will to live and desire to smile but sometimes it’s easier than with emotional pain. Physical pain and mood can be separated. But depression is a mood or mood disorder so it’s kind of more difficult. It is possible though to be positive even with depression. It can be so difficult but possible. 

Also, emotional pain like depression seems threaded throughout my entire being or self or existence when I’m depressed. Physical pain related to my disorder consumes my entire existence it seems, but I often feel like it’s a thing separate than me while depression often runs deeper and feels like it is me sometimes. I’m thankful for the experience with pain. Both kinds. I feel that it deepens me and completes me and I see things in a way I would never know without it. I think I have had enough pain though in this life so it can feel free to go now! Lol ;-D I’m not depressed but last week I was able to detect an impending episode which I’m doing very well battling so it doesn’t become a full blown episode. Usually I have to battle it for weeks or months, however long the episode would have lasted, I guess. 

I was disappointed that my severe pain had to flare up on a day I have work. This kind of pain only usually lasts one day. Tomorrow is my day off and I was thinking why couldn’t it have decided to attack me then instead. But I’m more on the positive side, naturally & generally. And my brain automatically thought it’s ok because then my day off will be more fun without this pain! And if it was the other way around and my pain was on a day off, I can think it’s ok because then I won’t have to work in agony. Positive thinking is so wonderful! On days when it doesn’t come as naturally, I can usually force it more easily since I’m already in the habit. No matter how positive we are naturally, we can develop an intentional habit! It makes everything so much better! 

So I did come to work tonight and again there was a very happy story on the news!

I shared a little happy story a couple weeks ago about a dog and this story also involves a dog!

https://inspirationalgem.wordpress.com/2015/10/17/in-the-news/

On the news tonight, a girl and her husband were sharing their story and love for their dog.

They were at a friend’s cabin in the woods somewhere, celebrating the man’s 30th birthday, and someone left the door open and the dog, Hank, ran away into the wilderness. They did everything they were able to do but couldn’t find Hank. Their worst fear was that Hank was eaten by a wild animal. According to the news program, according to statistics, if a pet is gone for over 30 days, that pet most likely will not be back.

Hank was missing for two months when he was found alive & well and returned to his humans!
The girl said she looked out and saw the truck pulling up to their house with Hank’s head hanging out! Lol That’s so cute! She cried tears of joy to have him back. 

It’s so heartwarming to see the love they have for their furbaby. They have decorations in their house about dogs saying “All you need is love…and a dog!” and “Dogs are people too!”
I most certainly agree! ❤

I'm so happy they got their baby back alive & healthy & happy! They also have a cat and he was playing with the kitty! 

They said to always have hope because you never know when something can work in our favor even when statistics are not. I don't remember their exact words but that's the sentiment. It can apply to most things, I believe. 

It's good to have hope but let's remember not to let it hold us back. It's possible to obsess and overlook all that we have now, hoping for something more or better. So hope isn't always a good thing if not handled well. 

We can have hope for the future but also appreciate now.

For example, it's good to have hope that my headache will go away but not good to not let myself be happy now or hold off on things until it does. I can cope with the pain and make room for it, rest when I can, but still do what I want to when I can. I wasn't going to read my book at first because I thought it wouldn't be as fun reading it with a throbbing head. Then I thought but why not anyway because it's good to make the most of the life we have right now. If reading made it worse I wouldn't but it wasn't making it worse. This moment still matters even with a splitting headache. 

I'm so happy I walked into work to another happy story! Which just happens to be another story about a doggy!! ❤

Dogs really are some of the best friends we can have! I have six babies and they're just adorable! 

Here are two of them! 

This is Emmy

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 & 

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This is Woody, Emmy’s baby boy. 
Emmy has two babies, a boy & a girl, Quinny.

Emmy is two years old and Woody & Quinny are one year!

They are both loving and cute and snuggly.

Woody is very playful and wild. They love bones and toys & blankies.

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This is Prince Oscar. We don’t know how old he is but he’s definitely old! He’s so adorable and a big grump! He loves attention when we just wake up or walk through the door or even just down the stairs after leaving for a couple minutes! He cries until he gets petted.  He also loves sweets! Sometimes I bring him an ice cream cone after work. 

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This is my baby, Isis Summerjo, she is eight years old but very youthful! 
She loves attention and going for walks! She’s extremely gentle and loving & sweet.

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This is Woody’s twin sister, Quinny. She’s so happy & loving and gently puts her paw on our hands and on the other dogs’ and cat’s faces! She’s very gentle but when we’re least expecting it, the girl jumps up and nips our noses off! She’s a wild girl!  

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This is Boobie. She’s the mommy and she’s thirteen years old. She’s very cute and loves her babies. She makes sure they eat first and she cleans them. She begs for food by throwing her head back and opening her mouth to show us where food goes! She doesn’t play with toys but occasionally she would bring a toy to look cute to get our food! Lol so cute!! When her puppies were born we got them a pac n play and Boobie used to throw up in it on purpose to feed her babies even though they couldn’t eat it and were being fed properly! Lol my mom & sister found it disgusting! But she was only taking care of her babies! 

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“I got me so down, I got me a headache
My heart is crammed in my cranium and it still knows how to pound”

Headache – Frank Black – mobile

Headache – desktop

I like listening to this upbeat song and I found it one day a couple years ago while searching for songs about physical pain to help me cope with my headaches when they are bad.

I hope your day/night is a good one! Much love to you!

and if you are struggling with pain of any kind, always remember,

“You can be greater than anything that can happen to you.” ~ Norman Vincent Peale ❤

😀

xoxo Kim

If You’re Going Through Hell, Keep Going

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“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”~ Khalil Gibran

For the last couple of weeks I have been experiencing “ice pick” headaches, which are beyond excruciating. These aren’t the same as the cluster-like headaches I sometimes write about. My cluster-like headaches, which are a result of my chronic pain disorder, last much, much longer than “ice pick” headaches(sometimes cluster headaches are referred to as “ice pick” headaches, they have similar symptoms), also a result of this dreadful but non life threatening disorder. 

Ice pick headaches last, literally, only a few seconds. But the pain is unbearable or would be if the duration were longer. The pain level is almost to the same excruciating level as my cluster-like headaches are. I call them “cluster-like” because I don’t have Cluster Headache (CH) that I know of but I have a different pain disorder that triggers similar headaches. The ice pick ones don’t feel as much like a burning sensation as the cluster ones.

These ice pick headaches I have been experiencing off and on, I think every single day now for like two weeks, make it feel like someone is slicing through the back of my head with something (probably why they are called what they are called). This isn’t metaphorical/poetic speaking/writing or whatever; it literally feels like an assault on my body.

I don’t even like using the word “literally” much because it has become a trend to use it so loosely or unnecessarily, when things aren’t actually/literally “literal” that it seems, to me, to have lost its meaning or seriousness or its literal-ness. Or something like that. 

Many people have developed the habit now of saying/writing things like “I literally spilled my coffee on me today!” “I literally missed the bus!” “I literally can’t live without this new drink I discovered!” “I’m literally going to dye my hair today!” “I literally just can’t even!” lol

I’m so thankful for the word “literally.” The saying “you don’t know what you have until it’s gone” applies here. I can’t say that about everything I have/had. Many things I do know what I have/had before it’s gone but I never realized what an incredible purpose the word “literally” serves (or served) until people started overusing it. Sometimes I’m so frustrated because I can’t seem to get my point across about my pain or convey the true agony or depth of it. And the word “literally” has often saved me, helped it feel that I am in fact getting most of my experience to be understood. “My head literally feels like it’s splitting” or “I feel that it can literally kill me.” 

But now the poor word has lost its weight, its ability to be taken seriously and with it goes my sense that I’m getting my true experience out there. 

So thanks to all those who “literally” cannot live without coffee and “literally” flew to the bus this morning and still missed it and “literally” jumped out of your skin when something scared you silly, and “literally just can’t even.” Now “literally” and me have lost our voice. Lol Jk I’m not really resentful, I’m actually quite amused. But it’s true that when we use a word so much and out of place or so loosely, it tends to seem to lose its original message. Some words change or have additional definitions after a while and that’s ok. But come on! This isn’t even the case here! This word is being tossed around in a completely nonsensical way. oh, well.

But these ice pick assaults feel as if my head is truly splitting. And it’s like bolts of electricity searing through my face, head, eye, temple without warning. They come on out of nowhere.

I don’t have them frequently each day but they are becoming more frequent, hopefully only temporarily . They are not as traumatic as the cluster-like ones but nearly as painful. Every day now I have them usually on two occasions, usually later in the day, like early evening then again later at night. And on each occasion, I experience usually two or three, one right after the other. Like bolts of electricity or invisible bullets piercing my temple and eyeball and like something sharp plunging into my head, on the top and in the back on one side, the right side. After the barbaric attack ends, I feel physically weak. Sometimes hot or dizzy, and sometimes I have an urge to sob.  

When they end I feel like I can pass out and often sit to rest a couple minutes and during the seconds they occur, I feel as if the pain itself can physically kill me. If I did not have the pain disorder or wasn’t diagnosed, I would seriously think I’m dying. I would be convinced. Sometimes I still wonder if I’m dying when it’s happening. 

It’s amazing how many thoughts and feelings we can have in a mere few seconds. I never really realized that before these ice pick attacks began everyday like this. It reminds me to watch my thoughts and make sure they are mostly positive and loving. Also, it reminds me how much can happen in a second, how each second truly matters. In a second, my world can crumble on top of me and in a second, hope can creep into my head and lift me and in a second my wisdom can deepen and I can discover and learn and share. In a second I can choose to conquer my pain and in one second I can choose love.

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We often seem to think of one second as useless or too fleeting to matter. But this life is made up of one seconds, single breaths, fleeting moments, individual heartbeats. Together we realize how important they are but each one in itself, we seem to tend to forget. I am reminded to cherish each one. Hold each one close to me. Make the most of each & every one. 

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One thing that I find that helps me cope with severe physical pain and the emotional trauma of it is to accept the pain instead of judging it or wishing it away. Taking deep breaths and allowing the pain to come as it will. This can be extremely difficult but with practice it gets easier.

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I have sometimes been angry with the physical agony of my chronic/episodic pain disorder and sometimes even at my body or the part of it responsible for this hell.  

I love my body, both the aesthetic beauty of it and what it does for me, allows me to live, to love, to experience, to reach out my hand and help someone or reach out my arms and warmly embrace others.

But sometimes when I have been very sick (with kidney stones for example) or in pain, I let my love take the backburner and felt a devastating sense of betrayal. Like my body is betraying me, doing this to me. After all the love I have lavished onto it and express for it. As if my body has consciously chosen to do this to me. Sometimes I have been angry at my jaw, the source of all my pain. This is very rare for me to experience but I have felt it before. 

What is more common is for me to become furious with my physical pain itself. I have even felt an urge to seek revenge upon it. It sounds amusing and ridiculous and makes no sense. Pain is not a sentient thing with a choice or consciousness. But I have felt furious and wanted to scream at it and throw and break objects while cursing my pain for destroying me. I have waited for my pain to materialize before me so I can rip it to shreds. Into little pieces, the way I feel that it does to me. 

This doesn’t help. Screaming and taking fits while in the midst of a severe flare up of physical pain, fantasizing about seeking revenge on my pain, does nothing to help me. It doesn’t ease my pain or relieve my anger. All it serves to do is worsen it. And it is devastating enough without unnecessarily adding to it.  

(It’s interesting to think about this because I don’t hurt or kill humans, animals, insects, any living, sentient beings intentionally ever so I know if my pain really was a sentient thing I can seek revenge on, I wouldn’t.)

Accepting my pain and my body is what helps. And meditating upon all the good my body does for me. I have now learned when I’m in physical agony, even seemingly unbearable physical agony, to ask myself “What is this pain teaching or reminding me?” “How can I use this experience to help inspire or bring a sense of consolation or hope to others?” In the earlier days of my pain disorder, it was rare that I was able do this. 
Back then all I was mostly able to do is scream and collapse and writhe on the floor and pace back and forth or crack my head against a wall all night long. Most of my thoughts were frantic and panicked, often despairing. Sometimes they still are and sometimes I still do these things, still get angry but more often now, I am able to consciously allow my pain to strengthen me and teach or remind me, deepen my wisdom and empathy for others in those moments.

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As soon as I feel the agony of my disorder flaring up, I am reminded of how I never want anyone to ever feel this way and try to think of ways I can bring even just a fraction of consolation or inspiration to others. I now have the ability to summon loving feelings more often than I used to when I was in severe pain. I am reminded that others are suffering or may be or can later be suffering like me and it deepens my compassion. It reminds me that when I feel like responding to things with unkindness, it’s better to instead respond with compassion. Compassion can ease suffering. 

My pain is worth it if I can use it as a catalyst for positive change and if I can allow it to inspire me to reach out and help someone in some way, even if it’s just sharing a positive quote or picture on social media. Or reminding myself to show more compassion even to people acting less than kind, at any moment they can be struck with pain or maybe already are suffering. 

One thing I learned that I would have never known if not for my disorder, is the existence of “beyond unbearable pain.” I never knew that physical pain can be beyond severe or beyond unbearable. Now I know. I think life itself is  beautiful  and while I don’t want to suffer, if I have to its good to let it teach me. Pain to all extents is part of this life. And the more I get to experience of life, the better! Even when it’s not pleasant. I won’t go out looking for pain but if it happens to find me, I will embrace it. I don’t always succeed but that’s ok. 

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Though it can often feel like it, my pain is not my enemy. It is my teacher, my lessons, my inspiration, my strength. And I am not a victim of my body. My body does all it can to keep me alive even when it’s sick and in pain. It does all it can for me. It doesn’t want to suffer.

When I keep this in mind and focus on this and lavish love onto the places of me that hurt, when I breathe, consciously aware of each breath that goes in and out, and remember I am not my pain, it helps me cope. Pain is separate and I can build an invisible/emotional barrier to distance my body or self and the pain so I won’t identify with the pain. 

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One of my favorite books is “How to Solve Our Human Problems” by Geshe Kelsang Gyatso, meditation master, Buddhist monk, teacher of Buddhism, and one of my favorite authors. In his book he writes:

“The feelings of hurt are inseparably bound up with grasping at I and mine. We strongly feel ‘I am hurt’ or ‘My feelings are hurt.'” (How to Solve Our Human Problems pp. 43)

And 

“There is an enormous difference between the thoughts, ‘I am feeling bad,’ and ‘Unpleasant feelings are arising in my mind.’ When we identify with our feelings, we make them bigger and more solid than they are, and it becomes much more difficult to let the unpleasant feelings go. On the other hand, when we learn to view our feelings in a more detached way, seeing them simply as waves in the ocean of our mind, they become less frightening and much easier to deal with constructively.”  (pp. 44) 

When I first read this, I laughed hysterically. 

“Unpleasant feelings are arising in my mind.”

Sometimes I still do. Who goes around saying “There are unpleasant feelings arising in my mind?” Imagine being pissed at someone and yelling “There are angry feelings arising in my mind at you!!” Lmao I couldn’t say that and keep a straight face. I’m laughing as I’m writing this.

But these words he speaks are true. 

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Venerable Geshe Kelsang’s point is to dissociate or detach, to not allow our self to identify with our pain. Not ever to repress or deny it but to not be one with it, to distance ourself and our unpleasant emotions or feelings. We are not those painful feelings. We acknowledge them and that they severely affect us. But then we detach and realize they are not inherent in our existence. If something is not me or essential to my very existence, I don’t have to identify with it. 

I couldn’t see exactly how this can work but I love Geshe-la and while I don’t agree with all his views, I trust his word. His practical tips are extremely helpful and his love and wisdom run deep. 

One night, somewhat recently, I woke up in excruciating physical pain which triggered fear. People often say emotional pain is worse than physical. I can’t completely agree. Both can be agonizing and it’s dependent upon the one experiencing the pain and the situation, the degree of pain…

To me, severe physical pain is harder to deal with than severe emotional pain. And I have felt both horrific physical and emotional pain. 

So that night I was horrified and in unimaginable physical agony, beyond belief. My head was throbbing, aching, burning…

And I remembered his words. 

And I thought to myself “There is physical pain arising in my head” while taking deep deliberate breaths. I meditated upon the fact that pain and me are separate even when it feels I am consumed by it. Even when it feels I am one with it. Even when I don’t know where pain ends and I begin. I am not pain. I am not fear. Pain and fear are not inherent in me. I couldn’t believe the effect it had on me. Even though I did not completely grasp the concept. It calmed my fear and helped me cope. I felt my pain becoming more distant. Not going away, not necessarily even lessening but my self becoming less identified with it. This way I have a less negative emotional reaction to the physical pain.

This detachment can work for both physical & emotional pain. We are not our painful thoughts, our grief, our sadness or depression or anxiety. We are not our anger or our jealousy. These things arise in our body/mind but they are not us.

Instead of thinking I am in pain or my head hurts or I am scared, I detach, distance myself, dissociate. I don’t allow concepts of me or my body or I to be in the same breath as pain or fear. Fear & pain arise in my body but they are not me. They are not my body, not my mind, not my essence. They are separate. And by carefully selecting my choice of words, my thoughts, I can emphasize this and cope better with pain and fear. 

My body does hurt.
My head really hurts. 
I am scared.
I am in pain.

These are all the truth.

But these sentences do not always serve me well. They bring my body, me, my mind together with pain, allowing pain and fear to collide with me. Our choice of words and our thoughts have an effect either positive or negative and there are choices we can make to help us in painful situations.

Again, it’s not about denying or repressing but detaching. I can have something, admit that I have it but not identify with it. This even goes for positive things like money or a great job. I have those things if I do but they are not me. And I can separate my self and them. Then when I lose them I still will not be lost or diminished. 

Also, laughter always helps. And it’s hard not to laugh when I think this way. Lol It sounds ridiculous. Who talks this way?! ;-D

But it really does help me.

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(This is the back of the book. It just has a blur effect I put on because it looks prettier that way. The original picture looks kind of plain. This has a dreamy effect.)

I also would love to share some quotes and these songs for anyone in need or anyone who may be inspired or uplifted or just curious or entertained by them.

Songs:

If You’re Goin’ Through Hell – Rodney Atkins – mobile

If You’re Going Through Hell – desktop

Eye of the Tiger – Survivor – mobile

Eye of the Tiger – desktop

Hero – Mariah Carey – mobile

Hero – desktop

Quotes

“I choose to FIGHT BACK! I choose to RISE, not fall! I choose to LIVE, not die! And I know, I know that what’s within me is also WITHIN YOU.” (Mayor Pappas, “City Hall” movie quote)

“Pain is no evil, unless it conquers us.” ~ Charles Kingsley 

And we don’t have to let it conquer us.

“Pain can be endured and defeated only if it is embraced. Denied or feared, it grows.” ~ Dean Koontz 

“While there’s life, there’s hope.” ~ Marcus Tullius Cicero

“Today I will see something positive in all situations.”

“You can be greater than anything that can happen to you.” ~ Norman Vincent Peale

“I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.” ~ Dalai Lama 

“When you come close to sellin’ out,
Reconsider” ~ LeeAnn Womack

“Take that first step even when you can’t see the whole staircase.”

“Some people see a hopeless end, others see an endless hope.” ~ Unknown

“I will keep a smile on my face and in my heart even when it hurts today.” — Og Mandino

“And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” ~ Mariah Carey 

When I was in college, in one of my psychology classes, our professor, a clinical psychologist and very loving woman, would play this song for us and for our homework assignment, we had to print out the lyrics and were told to always keep them and look to them for inspiration. We were also required, for an exam, to fill in the blank part of the lyrics. It really is a beautiful song, isn’t it? Very inspiring and comforting and her voice, so soothing. ❤

“Embrace your challenges with an open heart because through every challenge, strength forms.” 

“You are not the victim of your body. ” ~ Dr. Christiane Northrup

“We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds.” ~ Aristotle Onassis

Our pain may not end or not end soon but we can still be happy, peaceful, live in love. It's all about conquering the pain and dancing in the rain & storms, sailing in the winds. 

“You could go the distance, you could run the mile, you could walk straight through Hell with a smile.” ~ The Script

“To embrace all things means first that one holds no anger or resistance toward any idea or thing, living or dead, formed or formless. Acceptance is the very essence of the Tao.”

“If you're going through hell, keep going.” -Winston Churchill 

This is for everyone in pain of any sort whether physical or emotional or with any problem. There’s always someone, somewhere who understands. There’s always hope as long as there is life. 

❤ ❤ ❤ 😀 

Lots of love to you!! 😀

Xoxo Kim 

Winter

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Today is the first real snow day this Winter! It has been snowing all day and the snow is landing! A Winter wonderland! Yay! 

Of all the beautiful four seasons, I am most inspired in Winter usually. Inspired to create and take pictures and also just feeling inspired. All the seasons are inspiring but there’s just something about Winter….

Something about the gray, the cold, the barrenness, the sometimes somberness, the bare tree branches, the glistening white, the footprints and paw prints in the snow, cat, dog, and bird paws! 

Something about dreary, dreamy landscapes and the warm, cozy feeling. The idea of firesides and soup brewing on the stove. A steaming cup of hot tea, frozen sunsets, Frigid sunrises, and Winter pj’s….

Something deeply inspiring!

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I love the feel of warmth that flows through my entire body when I hold a steaming cup of hot tea or hot cocoa in my hands! The feeling of towels and hoodies just out of a dryer.

For the last few days I have been suffering devastating headaches related to my chronic pain disorder. These headaches are migraine- like headaches, not as bad as the cluster-like headaches I can get where I can’t lay down or be still and sometimes scream through the night til my throat is raw. But still absolutely devastating.
Just devastating.
Sickly headaches on the one side usually, where I have to lay down, sensitive sometimes to light and sound. Dizziness. 

A throbbing achy ache. It hurts.

Sometimes my headaches and facial pain generally occur, most days, and sometimes they go away and generally I’m pain-free, most days, or only in very mild pain that doesn’t interfere with me. It comes and goes. 

But for the last few days, they have been occurring, most severely  in the afternoon. A severe ache. Sometimes it’s hard to stand up.
They go away after a while but some days, quickly return.

My physical pain, even when it’s bad, usually doesn’t depress me even though I’m prone to temporary fits of depression. But it does sometimes provoke me to go into a “depressed-like” state. A state where I don’t get out of bed, sometimes for fear of making the pain worse, sometimes thinking what’s the point when I’m in so much pain. I stay in pj’s most of the day, avoiding things I like to do like putting my makeup on, art journaling, going out, even getting dressed..but it’s not depression. I still have the desire to do things, still have interest and appetite, it’s just I feel that the pain will either get worse or mostly ruin the fun of doing anything pleasant. And sometimes the pain is so physically severe I literally can’t stand up or I’m too dizzy and it throbs so much. 

But it’s not good to think that way.
I’m going to feel the pain anyway so why not throw a little fun and inspiration into the mix!
Doing fun things as long as I’m physically able to, can help significantly. Help me cope, distract me, and allow me to think of something other than the pain. This pain hurts me not only physically but emotionally. It hurts to hurt so much. 

But I won’t let it conquer me. If I want to stand up, I will stand. If I want to go out for a walk I will go. If I want to take pictures, to draw and paint, do stretches, I will. It takes courage and strength some days but I will muster the courage and the strength. 

There is so much beauty to be thankful for! 

Also when I keep doing fun, inspiring things even when it hurts, the habit will become more and more ingrained, the habit of having fun, coping when pain is overwhelming. 

Sometimes my pain even sends me into a deep, deep abyss of dark despair or a full blown panic. But I always find my way back to the sunlight.

For a while my pain disorder has been mostly not acting up, I have been not hurting everyday, and even when the pain would arise it was brief and mild. But this disorder flares up terribly once in a while. It’s ok though. It’s to be expected and at least I’m alive to feel pain, right?! 😀

Whenever I want to crumble, I remind myself of the goodness all around me. The beauty of Nature, my books, uplifting quotes, people, animals, taking pictures….the fact that I’m alive, the fact that pain strengthens us and teaches us, deepens our empathy, compassion for others, and our wisdom if we allow it. I won’t let my pain be in vain. I won’t let it conquer me.

 “Think of all the beauty still left around you and be happy.” – Anne Frank

My head has been throbbing today but when I look out the window and watch the little flurries, when I take a walk and listen to the white crunching, feeling the cold embrace me, when I catch a snowflake on my tongue, tasting the wet coldness, and smell the fragrance of wet concrete and hear the cars sloshing through the sludge in the streets, it temporarily burns out the pain, the emotional pain that accompanies the physical and it helps me cope with the physical pain. I look up a foggy street of white like a dream and the magic ventures through my veins. I know I can go on.

Here are some of my pictures and my favorite Winter quotes! 

“I prefer winter and fall, when you can feel the bone structure in the landscape—the lonliness of it—the dead feeling of winter. Something waits beneath it—the whole story dosen’t show.” ~
Andrew Wyeth

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“And finally Winter, with its bitin’, whinin’ wind, and all the land will be mantled with snow.” ~ 
Roy Bean

“We cannot stop the winter or the summer from coming. We cannot stop the spring or the fall or make them other than they are. They are gifts from the universe that we cannot refuse. But we can choose what we will contribute to life when each arrives.” ~
Gary Zukav

“People ask me what I do in winter when there’s no baseball. I’ll tell you what I do. I stare out the window and wait for spring.” ~
Rogers Hornsby

While I usually promote living for the moment, not overlooking Now just to want something else, I love this quote and concept because it’s so full of hope. It shows that we have things to look forward to, whatever season (whether a season of Nature or a season of life) we are experiencing that may not be pleasant to us at the moment, it will end and something seemingly more pleasant will begin. It’s fantastic to live for now but also great to have something to look forward to and know seasons are fleeting. 

“The winter solstice has always been special to me as a barren darkness that gives birth to a verdant future beyond imagination, a time of pain and withdrawal that produces something joyfully inconceivable, like a monarch butterfly masterfully extracting itself from the confines of its cocoon, bursting forth into unexpected glory.” ~
Gary Zukav

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“Even in winter an isolated patch of snow has a special quality.” ~
Andy Goldsworthy

 “You can’t get too much winter in the winter.” ~
Robert Frost

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 “While I relish our warm months, winter forms our character and brings out our best.” ~
Tom Allen

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“Let us love winter, for it is the spring of genius.” ~
Pietro Aretino

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“Once something has outlived its usefulness in one area of life, its purpose for being in existence is no longer the same. The leaf that captures a stream of sunlight, and then transfers its energy to the tree, serves one purpose in the spring and summer, and another completely different one through the fall and winter.” ~
Guy Finley

Each season, each day, each stage of life, each sentient being…is important.

 “Each solstice is a domain of experience unto itself. At the Summer Solstice, all is green and growing, potential coming into being, the miracle of manifestation painted large on the canvas of awareness. At the Winter Solstice, the wind is cold, trees are bare and all lies in stillness beneath blankets of snow.” ~
Gary Zukav

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“It was one of those March days when the sun shines hot and the wind blows cold: when it is summer in the light, and winter in the shade.” ~
Charles Dickens

“I love the scents of winter! For me, it’s all about the feeling you get when you smell pumpkin spice, cinnamon, nutmeg, gingerbread and spruce.” ~
Taylor Swift

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I wish you much love, happiness, warmth, joy, and healing if you need a sense of healing. I hope you are staying very warm & cozy wherever you are if it’s cold. My heart goes out to anyone struggling with the cold weather or chronic pain or sickness, grief, depression, anxiety/panic, eating disorders….anything. We’re all in this together and we can help lift each other. We won’t all experience all of these things but we can use whatever experiences we have, no matter how serious or less serious, and our basic empathy to better understand to some degree, each other’s pain.

“I will keep a smile on my face and in my heart even when it hurts today.” ~ Og Mandino ❤ 😀

Xoxo Kim 

On Pain, Hope, & Life Lessons <3 {Healing Hands}

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“Although extraordinary valor was displayed by the entire corps of Spartans and Thespians, yet bravest of all was declared the Spartan Dienekes. It is said that on the eve of battle, he was told by a native of Trachis that the Persian archers were so numerous that, their arrows would block out the sun. Dienekes, however, undaunted by this prospect, remarked with a laugh, ‘Good. Then we will fight in the shade.'”

This morning I woke up not in pain. It was a strange, strange thing to wake up to. This is because I’m almost always in mild physical pain. Sometimes moderate, sometimes severe, occasionally unbearably severe. But usually just mild. It’s like background noise, the clothes against my skin, the back of a chair against my body. It’s just there, I don’t even usually realize until something brings my attention to it for some reason. It’s almost never a problem to me that I’m almost always in pain. I just accept it. It just is. It doesn’t interfere with anything or prevent joy or happiness.

Although, sometimes it disturbs me that some people must always or frequently be in pain even if it’s only mild.
It hurts me to think of it, occasionally.
And occasionally I am fearful of the fact that my body can always hurt.
Sometimes I am filled with a sense of dread.

But mostly, it’s not a problem, not an issue at all. My pain is often so mild and so frequent, so mundane that I used to suspect if it somehow does go away, I may not even notice. The mild to moderate pain is so deep into my body, so ingrained it feels as if it will never go away, like it can’t ever go away. Like it’s not a possibility. It’s so deep into me. In my face, jaw, and head. It’s as much a part of me as my other physical attributes, like the color of my skin, my hair, my dna…or at least I thought so.

I used to feel this way about my depression when I was depressed constantly everyday almost, for many years. But the difference is, the depression was a problem, a serious problem. It was destroying me. It wasn’t mild.
And for me, mild depression is worse than mild physical pain.

My mild physical pain doesn’t destroy me.

One difference to me about severe physical pain and depression is when my severe physical pain ends, I am consciously aware for a short while that I’m no longer in agony but I always go back to my usual ways of generally forgetting that I’m no longer in severe pain.

I always promise myself I won’t. I promise myself that when the horror of physical agony ends I will every waking second of everyday realize and be consciously aware that I’m not in physical agony, suffering. I break that promise. Again and again.
Sometimes I do consciously, intentionally acknowledge that I’m not in severe pain even when I haven’t been in severe pain for a while and I give thanks. This can happen out of the blue or I can intentionally summon those thoughts and feelings. My pain teaches me to be more aware of not being in pain than I would have if I never experienced it, but it’s not on my mind every second.
You know when you are very sick or have a sore throat or anything and it ends and you are consciously aware for a while then you go back to being used to it being gone?

With depression, for me, it’s not like that. I am consciously aware, literally almost every second, often even in my slumbering dreams, that I’m not suicidal and depressed when I’m not. I don’t always talk about it but my deep awareness is always there.
After years and years and more and more years of suicidal depression day in and day out with only short breaks, now that I am generally happy, I can’t take a single second of not being depressed and suicidal for granted. Not a second.

I am consciously aware of my desire and will to live. Almost always. This awareness began in 2008 but deepened and became more frequent in 2010 and as the years went on, it became even greater.

That’s why I write about it here so frequently and in a positive way. Because it’s always on my mind. And it inspires me. And I want to help everyone else I can with or without depression.

If you have ever been depressed for a few years or months or just an episode or environmental depression maybe you understand or not. But maybe people who have been depressed and suicidal for so many years, it’s hard to count, and almost constantly or for each stage of life, a life long condition, will understand at a deeper level exactly what I’m saying.

I don’t usually meet people like this that I know of.

But even if you never experienced depression of any sort, you can get some sort of idea, I hope.

I try to use my pain, both physical and emotional, to my advantage. It deepens my empathy for others and nurtures my creativity. It encourages me to always, consciously notice the beauty around me. All the simple beauty and joys. I have felt physical pain that is just as bad as my severe depression. Less frequent but the magnitude just as severe.

Also, to me, physical pain and sickness have a way of seeming more urgent than other problems, even severe problems. It has a way of temporarily pushing everything else aside, screaming for attention. It’s louder than other pain, though not necessarily worse or more painful. It needs tending to right then and there while everything else can take the back burner for a moment. It screams louder.

Both kinds of pain inspire me.

Both shatter me and make me whole.

My physical pain is usually a dull ache but it can exacerbate into a more intense throbbing ache or burning, stabbing, shooting pain. It can be constant and come in bolts of sharp pain or burning. Over and over.

When I just think of eating, I automatically, like a reflex, think of a dull ache or sometimes an unbearable throb or stabbing. I cannot chew without pain, like I said, not usually a problem as long as I’m careful but sometimes it’s a serious one. It’s not my choice to think of pain when I think of food. Again, it just is. I see food or even just think of food that looks good to me and automatically my head conjures up thoughts of pain because my jaw dysfunction results in not being able to chew without it. When I imagine eating, I imagine hurting. To me, eating is hurting. Sometimes eating is even suffering. But I don’t even always realize it because it’s so automatic and natural to me. Like if you imagine food then the taste or texture of the food or pleasure of eating. I think of all that and pain, usually mild.

I read a story written by a lady with a severe case like mine, but even worse than mine. She said when she goes to a restaurant and looks at a menu to choose her food, she doesn’t think “What do I want to eat today but how much do I want to suffer today?”

I know that exact feeling. Sometimes no matter how mouth-watering food looks, it’s just not worth it. And the pain doesn’t always come on right away. Sometimes I eat something I know I shouldn’t or chew gum, and I’ll be paying for it later. It’s better when the pain flares up worse right away because it’s more of an incentive to avoid it the next occasion I feel like giving in. Sometimes when some of us know we won’t have to pay now but later, we give into temptation because later seems less of a reality than the more near future. Like maxing out three credit cards in like less than a month. (I’m guilty)

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Today I woke up and automatically knew something was different. And I knew right away what it was. I wasn’t in pain. Not even mild pain.

But it wasn’t just that.

It wasn’t just the absence of pain but more like the actual presence of “no pain.” As if “no pain” isn’t merely lack but an entity itself. It was a presence. A physical presence. “No pain” wasn’t just lack of, it wasn’t just no pain. It was something. A healing “blanket.” Like a thickness of something. My jaw, my face, my head. It finally stopped throbbing. It finally stopped aching. The stabbing, the burning, it all stopped.

But something came in its place. Something I can’t explain or understand. I don’t know if it’s just because I’m not used to not being in pain, it felt like this or if it was something else but it wasn’t a mere absence or lack.

It was a feeling of like healing and comfort all in my jaw, face, and head. A soothing essence, a physical presence of hope. That’s what it felt like. I don’t know what else to say about it because I can’t find the words. It wasn’t just an emotional, mental, or psychological feeling. It was physical and only in the places where it usually hurts. It’s kind of bizarre.

I wanted to not get out of bed. I wanted to stay and bask and bathe and soak in that unusual, strange, warm, inviting feeling I never experienced before then. I wanted to greedily devour it. I feared, for a second, that it was only a dream and that I would awaken and soon the beautiful feeling would be snatched by the rapacious hands of reality.

But it wasn’t a dream.

When I wasn’t yet diagnosed with the disorder I used to lay in my bed many nights in agony. In so much pain both physical and the emotional pain and loneliness it brought
to me.
When it was unbearable and almost unbearable and I was often afraid to touch my face, I would imagine a hand touching my face, a soothing touch, rubbing my face, taking my pain away. Gently stroking my cheek. I imagined this hand in various skin colors. Sometimes it was an old hand with wrinkles, sometimes young and smooth skin. Sometimes it was a man’s hand, usually a woman’s. I even used to sometimes envision the fingernails, the prints. I felt the softness of compassionate touch. All different hands on different nights, delicately upon my face.

But it was always a healing hand. It couldn’t take away my physical pain but it helped me ease my loneliness and fear.

I would imagine a healing vibration just flowing through me. I imagined love flowing through my face and head. Flowing through every cell of my body.

The feeling I imagined back then is not unlike the real feeling I experienced this morning. It was almost like an invisible hand touching me, healing me.

I recently experienced a very bad flare up that lasted over a week then regressed back to the mild pain. I wonder if I dreamed of those imaginary healing hands last night, those hands that soothed my fear and eased my loneliness, and I woke up temporarily healed.

Did my cells hear my dream? Were my nerves and my muscles and my bones soothed by the memory of my vivid healing imagery late into the night all those years ago? Was my pain quieted by a healing sleeping fantasy? I will never know.

I was reminded that things CAN get better even when it seems they can’t.

This experience in the morning in its symbolic realness, instilled a deeper sense of hope into me. I thought that pain was literally impossible to heal, to get to go completely away. Not always necessarily in a negative way, not always despair. I thought it was just something I had to always live with constantly being there. It wasn’t all bad.

But this situation helped me realize that even when something feels impossible or like it can never get better, it can! Even severe depression, suicidal urges and thoughts and other unpleasant situations that feel hopeless and literally impossible to make better, they can get better. Even if a situation or chronic pain can’t get better or won’t for whatever reason, we can learn to live with it and be happy anyway.

Be happy anyway.

Find joy anyway. Find beauty anywhere.

In all its colors and forms and feelings.

I was reminded of this life lesson today.

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I hope you will tune into reminders and little messages of hope all around you. Sometimes they come easily, out of the blue, and sometimes we have to force ourselves to see.

But they are there. Little gems of hope all around. We can find hope in the early morning Sun, the Moon in the midst of all that celestial darkness, hope in the thousands of twinkling stars up above, hope in the gentle Spring that blooms to life after a long cold barren Winter, hope in the dead of Winter, glistening in the snow and frost, hope in the beauty of Fall, the crisp wind and leaves that adorn the ground and streets, hope in the soft rhythm of Summer’s sweet song, the warmth of the beams of golden sun that caress the living flowers and trees, hope in the pulsation of your heart and the rhythm of your breath. Hope in the life that breathes in you.

“I told her once I wasn’t good at anything. She told me survival is a talent.”
Susanna Kaysen, “Girl, Interrupted”

Xoxo Kim

On pain {suicide headaches} & prevailing

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(this photo is not mine; I found it on the Internet and it comes close to portraying the pain I’m about to describe here)

http://www.ihateheadaches.org/tmj-andi-trigeminal-nerve.html

http://www.clusterheadacheinfo.org/

http://www.tmjhealth.com/WebPages/Headaches.html

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(me ❤ )

I have tmjd “cluster headaches.”
And I have been having them for three days now. They are excruciating beyond belief.
They are unbearable.
It is a nightmare but it’s real.
I keep feeling a kind of dread knowing another one is probably going to hit me any moment.
I had one at work last night and it’s the first one I ever had at work. It lasted less than an hour and luckily work was slow and I was alone so no one had to witness it. And while it was severe, unbearable even, it wasn’t the most painful one I ever had.
I wrote about them a while ago but never posted it yet.
Here it is. It may be filled with spelling/grammatical/punctuation errors, I wrote some of it while I was in severe pain and I edited some of it also while I was in pain.
It’s long, somewhat disorganized, and so exhausting.
But it’s my story with a lot of detail and I want to bring awareness to the horror of this rare kind of pain. And bring a sense of hope or comfort to those in need.
I don’t know if anyone will ever read it but it doesn’t matter, it will always be here in case anyone ever wants to.
It’s an agonizing story and it takes courage and strength to put into words.
I have found that courage and strength within me.
About these headaches…..
They, themselves, are not life threatening but they are so physically painful they can drive someone to contemplate or think of suicide, even attempt suicide, even when the person isn’t depressed. They are not common in people with my disorder, TMJD, but not unheard of. I can have them any season of the year but in Fall & Winter they’re more frequent.
Tis the season!

“TMJD cluster headache” Isn’t the diagnosis. Tmjd is and “cluster headache” is another disorder that tmjd can occasionally mimic.

As soon as the end of Summer is giving way to Fall, I’m bound to get those recurring “headaches” which are head attacks not mere aches. I don’t have them really frequently. Sometimes they’re frequent and sometimes they’re not. Usually not.

Tmjd or TMD stands for temporomandibular joint dysfunction. A temporomandibular joint (TMJ) is a joint in our faces. We all have one as long as our body developed properly. TMJ is not a disorder. It’s a joint in the body. TMJD or TMD is the disorder. The D is for dysfunction. So many people call TMJD just TMJ as if that’s the disorder when really it’s just the facial/jaw joint most of us have. I have TMJD or TMD. My jaw joint doesn’t function properly and some nerve is struck or affected by it causing me severe, sometimes unbearable pain that can literally knock me to the ground. Literally.
TMJD, It’s not rare but thankfully it’s not real common that people have the severe pain and complications that I have with it.

It’s not exactly known what the cause is of tmjd but it can be hereditary or brought on by an accident or a blow to the jaw and there’s a nerve involved called the trigeminal nerve. I don’t know what the cause/s of mine is but there is someone with it on both my mom’s side and dad’s side of the family. I have never been in an accident or had a jaw injury. I had it since I was little but not nearly as bad or as frequently as now and wasn’t diagnosed until some years ago and as a young child, I did not have the horrific tmjd “cluster headaches” like now. TMJD is often under-diagnosed because it can be confused with migraine headache disorder and sinus and other problems, and for years I thought it was my sinuses acting up but worse than ever. I was at doctors offices and emergency rooms quite frequently in excruciating ear, head, and facial pain but when I grew up, it was fairly easy to diagnose because I have so many symptoms even when I don’t have any ear/sinus infection/cold.
Sinus problems can trigger a “cluster” flare up.

It can get better and worse. Symptoms can come and go or remain constantly in more seldom cases. Mine are almost constant but not always severe or cause me trouble. Symptoms can fluctuate mild to severe, back and forth. It causes temporary deafness, temporary voice loss, pain(which is my most difficult symptom to cope with) in the head, ears, shoulders, neck, back, teeth, jaw, face, it causes the jaw to temporarily lock open or closed, my jaw doesn’t line up properly and my teeth shatter easily, especially when I’m falling asleep and my jaw clamps closed, it causes a full feeling and other sensations in the ears, a popping, clicking, grating sound/feeling in the jaw, dizziness, ringing in the ears, it can make the roof of the mouth feel strange, and many, many more symptoms.

Tmjd can also feel like Trigeminal Neuralgia(TN), another excruciating disorder, one of the most painful disorders in the world. It’s even called “the suicide disease” because people sometimes kill themselves over the physical pain.

It causes sharp, shock-like bolts of pain through the face because the trigeminal nerve is aggravated. It is sometimes confused with my disorder because they can feel very similar if someone has tmjd very bad like I do. However, Trigeminal Neuralgia (TN) has no other symptoms that tmjd has and TN tends to be more serious.

It can be awkward when I’m physically close to people I don’t know like on a bus and I get one of these horrific shock bolts going through my face, I can’t help but jump and gasp and no one knows why I would do that. Thankfully though, it’s not very frequent.

There’s a rare disorder called Cluster Headache (CH) which is one of the most painful conditions known to medical science. It’s actually said by some researchers to be THE most physically painful disorder in the world. It’s one of the four basic categories of headaches which are sinus, tension, migraine, and cluster. Cluster headaches are said to be the most devastating of all the headaches. It’s said to be more painful than amputation of part of the body without anesthesia, natural childbirth with no drugs, kidney stones, broken bones, and just about anything else you can think of. Women who have experienced both cluster headaches and painful childbirth say they would give birth every single day over having a cluster headache if they could.

I don’t have this exact disorder,(CH), but I have those kinds of headaches and three other(less severe and more frequent) kinds because of my jaw dysfunction which affects a nerve in the head, the trigeminal nerve and affects other parts of the head.

My tmjd “cluster headaches” don’t necessarily come in clusters like for people who have Cluster Headache (CH) where they have a cluster of headaches for weeks or months then can go into remission til the next cluster.
Mine can do that but they don’t necessarily.
Especially in Spring and Summer, I can just have one and not again for months.
There’s no known cure for my condition or for Cluster Headache (CH). And not all treatments are effective for everyone. Some people struggle finding treatment that works even just a little bit.

Cluster “headaches” are very different than migraine headaches and any other kind of headache. Cluster headaches are most common in Fall & Spring. Most people cannot be still or lay down with a cluster headache like with migraine or other pain. There’s no sleeping or resting with cluster headaches. Laying down tends to worsen the pain.

There are cluster headache sufferers who say they would take a whole month of severe migraine headaches every single day, all day over just ONE, fifteen minute, cluster headache that month. A whole month of severe migraine headaches over just one fifteen minute cluster headache!

That’s how bad it is. When someone would choose one whole month of excruciating pain over just a couple hours or even minutes of another kind of pain, you know the other kind of pain is to a ridiculous, unimaginable level.

Cluster Headache sufferers can have less severe pain, called “shadow pain”, in remission intervals. It can still be quite painful.

I don’t know if my condition, TMJD, causes/triggers literal/actual “cluster” headaches, like cause the exact headaches even though I don’t have the actual disorder, or if the headaches just feel the same.
But they are fucking EXCRUCIATING.
Like you just can’t believe.

The nature of tmjd is different than the nature of CH so it’s possible that treatment for ch would not work for me if I tried it.

Someone can have both disorders and they can trigger each other.
I don’t have migraine headache disorder but can have similar headaches as people who have it. They are painful hassles. I usually have to lay down when I have them. They can be debilitating too. In a different way.
Cluster headaches are much more devastating but I can still get up and do things when I’m not collapsing and screaming. I have to get up and do things; I just can’t be still. But with migraine-like headaches I have to lay down.

Sometimes I can probably physically work better with a cluster headache than a migraine one. Because with cluster-like headaches I’m always on the go. And I have to try to distract myself which seems near impossible to do.

People ask sometimes what’s the difference with a migraine and cluster headache. The symptoms and pain level are the difference. And I occasionally see photos and statuses posted by people who are currently experiencing a migraine headache telling everyone about their pain. “This is me laying in bed with a migraine headache!” Not everyone with them can do this but some do. When I’m having one of those dreadful cluster-like headaches I can never even think about posting a status or picture just for fun or to notify everyone, of “me having a tmjd cluster headache.” Totally not happening.

There’s absolutely no desire and social media doesn’t even exist anymore to me when I have one. All I can focus on is surviving one minute to the next. Holding on for my life and my sanity. It’s an urgent feeling. Some people do post videos of themselves having a cluster headache or a photo so people can see what it looks like for educational purposes and to help deepen the empathy of people who aren’t aware of the immensity of the pain. But no one does this for fun or just for the hell of it. One side of the face gets messed up. Whichever side the pain is on. My face sometimes swells up and the eyeball waters and nose runs or gets stuffed.

Nothing I ever felt comes close to the level of pain as the tmjd “cluster headaches.” Nothing.
It’s not completely understood how my condition works. But like I stated earlier, a nerve is involved, the trigeminal nerve, which innervates the TMJ.

These disorders, migraine, tmjd, cluster headache, and TN are all excruciating, devastating disorders that wreak havoc on people’s lives.

People with Cluster Headache (CH) sometimes say they get frustrated when they say they have cluster headaches and someone responds with “I have/had those” when really the person has no idea. If you ever have a cluster headache because of CH or a tmjd “cluster headache” because of tmjd, you won’t EVER forget that experience as long as you live. It will forever be etched upon your brain, scarring you for life. Even if you only ever had one of those headaches in your whole life for fifteen minutes and never again. You would be changed forever.

It’s like nothing else I have ever felt.
Like nothing you can even imagine.
Even some people with my condition, tmjd, who tell me they know what it’s like really don’t because they don’t have the cluster-like headaches. Severe tmjd related pain is not the same as the unbearable tmjd “cluster headaches.” Most with tmjd don’t get them. No matter how severe it gets, it’s not that. Tmjd can cause someone bone deep, soul shattering pain, unbearable pain, I know, I have that too now and again and it’s devastating but it is NOT anywhere near as bad as cluster headaches and tmjd “cluster headaches.”

I have pain that makes me want to escape my body, crawl out of my flesh it hurts so bad and as bad as it is, it’s not to the level of pain that cluster headaches and tmjd “cluster headaches” are.

These headaches can come on suddenly without warning. Last for hours then end just as abruptly as they began. In an instant.

Imagine someone slicing the back of your head open and ripping your eyeball out of its socket.
These kinds of headaches themselves won’t kill us as if our heads were really sliced but they are said to feel like that, like someone gauging our eyeball out through the back of the head.

When one of those headaches attacks me, I can’t see how I ever cared about anything else in this life. I can’t see how I ever cared that someone made a rude remark or looked at me the wrong way. I can’t believe I ever cared what people thought or said about me or what grades I got in school or what job I will have. I can’t believe I was ever disappointed over what now seem to be trivial things. I can’t believe I ever wondered what someone thinks of me. I can’t believe I ever cared about any concerns I once had. I can’t believe I ever thought anything else I experienced, physically, was really pain. Because next to this pain, everything else I felt is nothing. Just nothing.

When one of those is attacking I don’t care if I lose my job or become homeless. I have just about no fear other than fear of that pain. And this pain scares me. When one of these attacks begin I am frightened to the point my mouth dries up and my heart pumps quickly and my body feels the urge to run as fast as I can as if a murderer is chasing me with a pickaxe. And it feels like the murderer is hitting me over and over in the head and eye with that pickaxe, splitting my head, slicing through my brain, but I just can’t die. Like a woodpecker pecking away at my temple non stop, pecking away at the last tattered shred of my sanity.

The pain is so bad it’s like being trapped in a box with nowhere to go, it’s a feeling of panic and there’s no way to escape. That feeling itself is scary. I can’t lay down or sleep or sit or do anything but scream and run. Sometimes I cannot even do that.

When those “headaches” attack, nothing else exists in this world. It’s just the pain and me. The pain is all consuming. It consumes my body, my mind, my very essence. It consumes every square inch of my existence. It’s blinding and terrifying. Blinding waves of despair washing over me. Everything else around me suddenly disappears as if it never was.

They come out of nowhere. Usually waking me out of sleep. There have been flare ups where I screamed through the night for hours ’til my throat was raw and I lost my voice and the sun came up. It’s pure torture and my heart speeds up just writing this. My body wants to crumble to the floor and shake just thinking about it. This pain threatens my sanity.

A few weeks ago, I woke up at 4:54 am with one. Luckily it did not last long, even a minute of this pain is too long, but this lasted less than usual, about 20 minutes, and it wasn’t the worst one I ever felt. But it was bad. Really, really bad. There are no words for how bad it was. But it wasn’t the worst.

None of these attacks are mild or moderate. They are all severe, unbearably severe, but some are more severe. They are all unbearable. All of them.
A few weeks ago when the one hit me, I wanted to run out into the street and crawl under a parked car and curl my body into a ball and hold myself. It’s a bizarre thought, it’s true, but pain to this level can make someone think bizarre things. And do bizarre things. This pain destroys me. It feels as if it can literally drive me to insanity. Not as an expression or figure of speech, the pain is at a level where I seriously wonder if I will lose my sanity. I don’t know if it’s possible to literally go insane over physical pain but I fear that it is.

These headaches shatter me, completely. They shatter every part of my being in every way possible. They shatter me physically, emotionally, every way there is to be shattered. I’m not saying this in a negative way at the moment, even though it is negative. I’m saying it as a matter of fact. They shatter every part of me. Every part of me. All I can think when I’m having one and even when I’m not is that it just makes no sense how such pain can possibly exist. I can’t make sense of it. How can someone’s body experience this kind of pain to this level and how can we keep surviving it? I don’t even know how I do.

To try to put into perspective how severe the pain is I ask someone to imagine the intensity level of having brain freeze. It’s the closest thing I can think of to use as a reference but cluster headaches are worse, still. You know the headache you get for like three seconds if you consume something cold too quickly? Imagine pain to that level and worse for HOURS, not merely a few seconds or even minutes. HOURS! Can you imagine brain freeze and worse for hours non stop?! Or even fifteen minutes?
Imagine how it must feel to have a hot poker stabbed into your eye socket and held there for hours.
Most people probably don’t know what it’s like to be literally stabbed through the eye socket with a hot poker and if they do they are probably dead so it may be hard to imagine. It’s somewhat unrealistic but many of us know what brain freeze is so it may be easier to draw on that.
Sharp, burning bolts of agony along with an agonizing ache, not a regular headache but an ache beyond any headache you ever felt, like a toothache and earache and sinus ache but much, much worse. Like my skull under pressure, more and more pressure like it is about to split. Like it’s about to explode.
It’s just building up as each second goes by.
Like someone poking something through my ear closer and closer to my eardrum until it touches and presses and it’s about to burst. Like my temple being drilled.
Like an explosion in my head.
Like my teeth being pulled with no anesthesia and all the nerves exposed are being pinched constantly with tweezers.

How can anyone handle pain to that level for so long and recurring? I don’t know how I do or how anyone does. And there are people who experience this every day. Instead of having episodes and then remission for a while, they have the chronic kind. Every single day. No remission.

Imagine the pain of your eyeball being scalded with something scorching hot. And someone pouring boiling water over your head and face on the one side. For hours. And then it finally ends. Then before you know it, it’s back.
Imagine a toothache or dental surgery with no pain meds and earache like your eardrum about to burst, multiplied by infinity. Like someone taking a long, sharp, pointed metal object and stabbing your eardrum over and over, relentlessly. For hours.

The pain seems worse than this.

It’s HELL! It’s beyond Hell. Immense sharp burning and throbbing ache. Non stop.
I’m not comparing this to a toothache saying it’s similar, it’s nothing at all like a toothache, that’s just part of it, “toothache” pain.
And it can end then begin again right away! Over and over for days/weeks/months.
Mine usually only last for days but even that is too much. Just one is way too much.

It’s worst than a kidney stone. I know because I had a kidney stones. And kidney stones are excruciating. I would take a kidney stone every single day of m ver these headaches any day. It’s worse than post-surgical pain. I know because I had emergency surgery on my kidney/bladder when my kidney was enlarged and almost ruptured and the pain pills wore off way too quickly and the post surgical pain felt unbearable until I was able to take the pills again. It felt like the stent in my kidney and my bladder was made of barbed wire and cutting my kidney and bladder to shreds. Whenever I would move and sometimes even just lay, I felt my kidney and urinary bladder being sliced. And cluster headaches and tmjd cluster headaches hurt worse than that!
Also, even with the severe kidney and bladder pain I did not feel I would go literally insane if it wouldn’t go away. It was hard to handle but I wasn’t bordering on literal insanity. No other pain I ever felt, even the most severe ever made me believe I would go insane if it wouldn’t end.

My headaches used to be more of the severe ache than they tend to be now. The burning/sharp/stabbing gets worse now.

When I am struck with this pain, I am consumed in despair. The entirety of my being is consumed by this monstrous pain.
It’s like I want to run, run, literally run and crawl out of my body to escape the madd horror.

It is the worst physical pain I have ever felt in the history of me. The worst physical pain I will ever feel.

Someone can physically torture me any way imaginable for hours, stick pins under my fingernails, rip my fingernails out with nothing to numb the pain, rip my teeth out, and it won’t feel worse than these “headaches.”

They are the ones that wake me in the middle of the night where I jump up screaming hysterically. My mom gets frustrated and angry saying I have to stop because it sounds like I’m being murdered.
They are debilitating and occur on the one side of my face and head. There are no words to describe it. The word “ache” doesn’t quite cut it.
Sharp, burning/squeezing/throbbing/aching/stabbing throughout my face, eye, head, ear, and temple, sometimes radiating down my neck into my shoulder blade, I can have it on either side on different occasions but it’s usually the left. Almost always the left side. But in the last couple years, I now can experience it on the right. It never comes on both sides at once.
Lately it has been occurring on the right side. For these last three days, it’s the right.

People with Cluster Headache (CH) describe it as feeling like a hot poker being driven through the eye stabbing over and over and over or being held in the eye socket for hours on end. It can also be described as an “ice pick” headache. Those descriptions sound about right, to me.
It’s so traumatic and immense and even when they end, I am traumatized. Just thinking about them later can traumatize someone even when there’s currently no pain. It’s frightening. It’s horrifying to know someone can hurt so much.

For as long as they remain there’s no break in the middle. It doesn’t let up for even a few seconds. It goes on and on and on(even escalating) with no relief til it finally ends until the next flare up which may be right after it ends or not until months/weeks later.

I usually have pain in the middle of the severe attacks(usually mild to moderate), sometimes unbearably severe(usually not though) but less severe than the tmjd cluster head attacks.

Cluster headaches can last up to three hours then end and another can begin right away.

Cluster headaches are also known as “suicide headaches” and for good reason! They drive people to contemplate and even attempt/complete suicide because the physical pain is literally unbearable in the moments they occur. Imagine physical pain that is to a level that can make an otherwise healthy, non mentally ill person consider suicide not because of mental illness, depression, or necessarily because the physical pain is frequent but because just minutes of a kind of pain to that level is just unimaginable, unbearable.

The tmjd cluster headaches I have sometimes drive me to consider suicide just to end the physical pain right then. Not every little thing makes me want to kill myself, this is just so bad. I don’t seriously think about killing myself when I have them as much as I used to though, when they’re occurring. I know better now that killing myself is not the way to go. I will endure the pain until it ends. I will be strong and keep going. I know I can. In my head when it’s occurring I just keep thinking or saying out loud, “I can’t take this anymore” or “I can’t go on, I just can’t…” but now more I often keep telling myself “I CAN go on, I CAN conquer this, I am stronger than this pain…”

I am stronger. I really am. This is what I have been telling myself yesterday, the day before, and today to cope with this. I’m not having one right this minute but I’m still in excruciating pain. I wrote most of this a while ago and just fixing it up to post. The feeling that I feel this moment is brokenness.

When I think about killing myself over this, it’s not like a depressed kind of suicidal when I have those thoughts like “my life is so horrible, I’m so worthless…” It’s like “I literally cannot take another second of this throbbing, stabbing, pounding, squeezing, aching, burning through my face, head, eye, temple, ear….”

It’s like my head being in some sort of torture chamber.

Like invisible bullets one after the other, blasting through my temple.

I’m telling you it’s cruel and relentless. It is callous and no one deserves it.

When I have them I think maybe the pain itself will kill me or knock me out. To be knocked out would be a blessing.

But it never happens.

Instead I am forced to endure it while remaining conscious and fully aware of what is happening to me. When we have these, we cannot possibly sleep or lay still. Almost no one with these can remain still.

Unlike some migraine headaches, they usually come on without warning and unlike migraine headaches, we can’t stay in bed with cluster or tmjd “cluster headaches.” It’s impossible to be still. And laying down worsens the pain. They’re not just an achy, sickly, headache; they’re like sharp and stabbing. Blasting. And for almost everyone who experiences them, they are not accompanied by nausea and vomiting like with migraine headaches for many people. I don’t know what to do with myself when I have them. I keep thinking over and over “How much more can my body endure? How much more am I expected to take? HOW MUCH MORE?!?!?!?!?”

I become furious and devastated. And I literally just don’t know what to do or how much more I can take when I’m having one. I want to run to one end of the Earth and back again, I have thoughts like this that just make no sense when I have these headaches. I feel trapped and I don’t know if I should run outside or run into the street or bang my head against a wall or collapse to the ground or floor and scream. I just don’t know. I have done all of this at one point.

I want to scream and so b (not crying sobs as I do not cryobsabit things and break anything I can get my hands on. I am in complete and utter despair when I am struck.
Despair. And I can’t sink any lower.
Sometimes when I think about it later, it’s so unfathomable I almost want to laugh out of disbelief. It’s just like how can this be?

Sometimes all I can do is hold on physically. Hold on to a railing, a sink, the bars on my bed or on a bus…anything. Just hold on, literally. It’s all I have sometimes.

If you ever saw me having one, it would probably look like I’m having some kind of convulsions at some points and going completely insane at other points. And you would probably be petrified. Some poor strangers have already witnessed it and probably thought I was insane. And I kind of was. This pain will drive even the most mentally stable person to near insanity.
I sometimes run up and down stairs and pace, slamming doors, screaming, drop to the floor, collapse with my face in my hands, and shake violently, clawing at my face and eye. Smacking things with my hands, throwing my body against things, slapping myself hard all over my body.
I twist my body in ways it’s not meant to be twisted, like one possessed.
And it is a kind of possession. Not a demonic one but we are possessed by this cruel, unrelenting force just stabbing and pounding at our brains non stop, unforgiving. There are much better ways to handle the pain than this. I’m still learning.

I used to intentionally inflict pain upon other parts of my body to try to take the focus off my face and head. It never worked.
Sometimes I was afraid to touch my face for fear of making it worse and I would hit myself in other places or hit other things and sometimes the pain was so bad I would be in a panic just hitting my head and face over and over with my hands or a soda bottle or anything I could reach.

These “headaches” seem to reduce me to half the woman I am. They take away all of my knowledge and awareness of just about everything. All I can think of is how to survive and not lose every ounce of sanity I still posses.

I become some sort of feral being, something uncivilized, a sort of barbarian when they hit.
I become crazed and mad.
They push me to do things I never thought I could do and be something I never thought I could be, think things I never thought I could think, they unleash in me some kind of maniac. I can’t always scream or cry or sob but I feel like it. I want to watch things break and shatter, I want to throw and destroy objects, I want to scream until my throat is raw, I want to break through walls with just my body. I want scream and scream until I collapse into the ruin that was once me, until there’s nothing left of me. I did used to scream through the night until my voice became non existent and my throat hurt and my mouth tasted like blood and I had to gasp for air. But sometimes I can’t scream. I can’t scream or cry or sob. All I can do is sink into my despair and writhe and keep going until it ends. Keep going and going and going. Keep going. I am greater than this pain.

It is unfathomable, incomprehensible. Unspeakable. And it makes no sense. I couldn’t dream up this kind of torment in my wildest nightmare. But somehow my reality has found a way.

This screaming, this pacing and hitting, kicking, slapping, collapsing and taking violent fits, pawing at my head is not uncommon in people with these kind of headaches. This kind of pain and to this level is not at all common but like I said, not completely unheard of. Some people may be tempted to say acting like this is an exaggeration but there’s no exaggerating with this kind of pain. It’s never an exaggeration. It can never be an exaggeration.
And if you have ever felt it, you know.
I can learn to handle the pain better than this, be more calm, and I’m working on it. Some people with CH have learned how to remain calm and find that it helps them.

People say if you’re in so much pain you want to stay in bed. This is true for migraine headaches(and some other pain). They are sickly headaches and staying in bed is required, moving can make them even worse and increase/provoke nausea and vomiting for some people. But cluster and tmjd “cluster headaches” are something else.
The word “headache” is deceiving. There may be an ache involved but it’s not an ache that most people have felt. It’s worse than a backache and pulled muscle, worse than a pinched nerve. It’s not the ache you may be thinking of.

It’s like being in another dimension. Like an unearthly kind of pain. Something that can’t possibly exist in our world but it does. It’s like I want to claw at some walls of pain confining me to another world where nothing exists but an aching, throbbing, stabbing, burning kind of agony, I want to claw and break through to the world I knew the second before the pain hit, the second before my entire world crumbled and came crashing down on top of me. But all I can do is writhe, shake….and desperately hope it will soon end. They are mind blasting, out of this world headaches. They are so bad that if they were dramatically reduced, mitigated to just half the pain they are now, they would still be utterly, hopelessly unbearable. I know this because I have experienced ones which are way less intense, way less agonizing but still quite agonizing and still extremely difficult to handle. It is impossible to be still. It’s just anguish.

Years ago, during one, I came close to killing myself one early morning before the sun came up. I wasn’t depressed. Not depressed at all. I was actually happy before the pain hit. I recently went shopping for new clothes, hats, and stuff and couldn’t wait to try them all on again. Then it came out of nowhere, this cruel, callous, torturous pain that made no sense. I felt it before and assumed it was a sinus complication although it’s much worse. I woke up early in the morning in anguish. I screamed and screamed for hours. I held my head in my hands and held the bars on my bed and I screamed and paced and ran up and down the stairs and thought I was dying.

I fell to the floor screaming and pounded the floor with my hands endlessly until I felt I literally could take not a second more and I decided I had to end my life. Like I said, this is not a depressed kind of suicidal. But it’s still dangerous. I was recently at a doctor’s office for it, back then. But it got worse. I am someone who hardly ever goes to doctors offices or hospitals, especially if I know what is wrong with me or think I know and think nothing can really be done.
I have been to doctors for this pain on various occasions and was told I probably have sensitive sinuses and given nasal treatments which did nothing for me.
I have to be near death or in agony, usually, to go get medical treatment and believe I can be helped. Not because I’m afraid of medical things, I just think it’s a hassle all the waiting and stuff and I don’t always have money or health insurance.

That morning, I looked around at all the stuff that made me happy just a short while earlier, new clothes I bought, makeup, my phone…and it hurt me that I felt I had to die. Especially because it wasn’t a depressed suicidal pain and I wasn’t empty or experiencing lack of pleasure in things. Depressed suicidal is so different. I was happy and hopeful before the physical anguish and despair hit. I truly felt and believed that it would never end and that I just could not endure anymore. I slipped into dark, desperate despair I thought I couldn’t get out of. I got ready to go, my hands shaking, desperate. But I just couldn’t. I couldn’t bring myself to go through with it. So I stopped.

And I woke my mom and told her. Then, I was recently at a doctor’s office for the severe pain and treated for a sinus problem. But the severe pain I suffered wasn’t caused by a sinus condition, I believe it may have been triggered by a sinus cold/infection though. Sometimes they seem to be. Eventually the severe pain ended and I was thrilled. But it soon came right back and I slipped back into the darkest despair of my life other than the despair of depression. My mom called my doctor back and I went in for an emergency appointment. My ear felt like it was about to burst. My head and face felt like they were being crushed and split. My eye felt as if it was being ripped out of its socket. My jaw was locked. I couldn’t scream. I could hardly talk. It took all I had in me not to crumble while she was talking to me. But her voice was distant. It was just me and the pain. Nothing else could get through.

Her conversation with me seemed fractured. I was able to pick up on and understand some things but mostly I squeezed the bed thing I was standing against and tried so desperately not to scream or begin sobbing hysterically like notcryisng

U but gasps

or collapse to the floor. A girl in a room next to the room I was in, close to my age back then(about twenty-four/five years old), was in some kind of pain and she was crying and sobbing loudly. She kept saying she was so sorry for crying but it hurt so much. Her crying and sobbing was the only thing I could really understand then. It spoke to me in ways nothing else could. It was the only thing that made sense. I felt her, I felt her crying, her sobbing, her despair. She was describing something to the doctor, in her quivering voice, I can’t remember now but I felt myself in her words, in her voice, in her sobs. I felt sad for her and a strange, small, sense of comfort as well. Like someone understood me, deeply.
Also, there was a small child there that day who one of the medical assistants brought with her to work because she couldn’t find a baby sitter for her child. The little boy was giggling loudly and running around through the office, nothing but pure joy. A sharp contrast to my pure anguish and despair. It brought me a sense of joy even in my agony and I wished she would always bring kids to cheer people up but it’s kind of dangerous exposing a kid to germs and stuff. I found it in me to smile at him. Another small sense of comfort, a faint sliver of hope.

The doctor said there was no ear or sinus problem, no cold, no infection. That my pain and locked jaw was being caused by tmjd. Since I was having a severe episode right there, she got to see for herself, see it in action along with my history.
She told me about the categories of headaches and that it can feel like them all. She told me there’s no cure, no truly effective medical treatment, just home remedies to keep it under control. She said there was nothing she can do but explain things I can do to help myself. I thought the pain itself was going to kill me. I had no idea how I would live with this the rest of my days. I wanted to run out of there and collapse somewhere. I wanted to die. It ended again. Then began again.
Over and over for weeks. I struggled so hard to think about how I would survive.

I had my first very severe attack when I was twenty-four years old(although I had much less intense but still very bad ones before then, I remember waking up screaming in the middle of the night when I was fifteen years old with sharp stabbing, burning/achy pain on the left side of my face/head/eye and I cracked my head against the wall in my room near the doorway, because the pain was unbearable, I laid across the steps in my house with my legs and hands flailing into the night, moaning and writhing, and wanted to wake my mom, the next night I went to an emergency room and embarrassingly freaked out in there, throwing myself on the chairs, screaming, shaking chairs screaming about my sinuses while a few people watched in horror and disgust, clearly believing I was exaggerating. The doctors thought I had sinusitis and gave me antibiotics even though there was no sinus pressure or anything they could see like that. I had a runny nose and pain, watering eye on the left side, symptoms which are common in cluster headache, (CH) and sinus colds)

When people hear “sinus pain” it probably doesn’t seem real bad but this is unbearable and has some things in common with sinus pain. I never heard of it back then so I assumed it was my sinuses.

Four years ago, at age twenty-four years, I had no clue what hit me. It was a life-changing experience. I thought it was some complication of a sinus condition because I had no idea what else to think.

I never heard of cluster headaches back then or Temporomandibular Joint Dysfunction /TMJD. And I had sinus colds since I was little and I know certain sinuses are in the face and can affect the head so I assumed it was something to do with that and that the burning in my eye and stuffy/runny nose was an infection. I remember writing on Facebook after the first very severe attack, that my life has changed and I never knew sinuses can hurt so much and that I truly never knew what pain is until this, that it completely obliterates anything else I ever thought of as physical pain.
I remember thinking that about post surgical kidney pain before I came to know the true horror of cluster/tmjd head pain.

I tried everything I could think of for sinuses, nasal spray, saline solution, all kinds of prescription and non prescription meds. During tmjd cluster attacks I would spray bottles and bottles and more bottles up my nose all night long hours upon hours, before I was diagnosed. Sometimes the burning seemed to get worse. I took handfuls of Tylenol, over the counter analgesic stuff, prescription pain killing pills that someone gave me, sleep medicine, oragel for my teeth, sore throat spray to try to numb everything, icy hot all over my head, neck, face, , vicks vapor rub, everything. I rubbed neosporin with pain relieving properties all over my teeth because they were aching so badly.

Nothing worked. Nothing touched the pain. Nothing kills that pain.

Pain like that doesn’t sleep.

Doctors often don’t like to prescribe pain medication for chronic pain conditions and I understand why, because many people struggling with addiction try to get them. This isn’t anyone’s fault in particular, it’s just how it is. Doctors usually want to do the best they can and people with addiction experience a heartbreaking struggle and they’re desperate. I know what it is to be desperate. Pain pills don’t work for this anyway. Except maybe to take a bit of the edge off sometimes. But I would take that over nothing during these attacks. I feel shattered by this pain.

I am so desperate and in complete despair when a headache like this or even ones not quite as severe but still unbelievably painful attack me. It’s so unbelievable and so mind blowing that something like this can exist.

I don’t understand it. And my insides shake at the knowledge. I have thoughts about and triggered by this pain that make little or no sense.

I never knew someone can hurt so much. I never knew pain to that magnitude can exist in someone. It doesn’t make sense to me how it’s even possible. I don’t know how anyone can experience pain like that and come out of it still standing. It makes me realize even more how fierce the human spirit really is, how fierce our will is. How truly fierce and strong we can be.

Even if I only ever experienced just one of those “headaches” and never again, my life would still be changed. Not in some tangible way, not necessarily in an inspiring way or in a positive or negative way or any way that can be explained in words, not a way I’m always conscious of, necessarily, those things come along with it but those aren’t the only aspects. It’s just that knowing this kind of pain exists in this life and especially knowing it directly and intimately, changes someone forever.
It shifts something inside me.
In some kind of quiet way, it changed me.

It’s heartbreaking to think how much suffering some people are forced to endure and there are those who have this pain frequently with very little or nothing to help because nothing works to stop it.

image

You may or may not know pain to such a level as this but maybe you can use your imagination to try to get some kind of idea if you never felt this. There’s no way to come close to really knowing though unless you felt it. It’s truly, literally unimaginable to those who have no clue.

It’s not as much the sensation or kind of pain you won’t understand but the magnitude or level of it. That is what no one will ever truly understand without feeling this. The pain level is indescribable. That’s why it’s extremely difficult to draw on your own experiences to empathize. No matter how many agonizing toothaches, surgeries, migraine headaches, kidney stones, pulled muscles in the neck and back someone has experienced, nothing can be used as a reference point for the level, extent of this pain. I don’t know how pain to this level doesn’t knock us out but it doesn’t. But you may get a fraction of an idea of what some aspects are like. Think of the worst physical pain you have ever felt. Maybe a backache, a toothache, post surgical pain, being burned on your skin by coffee spilling on it or soup…..imagine that pain coming out of nowhere throbbing for hours on your head and face and nothing takes it away.
And it’s not over an injury right then or an illness. It just is.

Your entire life comes to a sudden halt, everything you knew just a second before is gone and you are left chained to a world of unspeakable horror. Imagine.
And your basic empathy that most of us are gifted with can allow you to understand in certain ways that we can all understand each other when we tune into it.

I think we can all relate to one another even if we don’t all experience the same thing, most of us have pain that is less and worse than someone else’s but less or worse doesn’t matter. What matters is underneath we’re the same. We are capable of empathizing and imagining. We can’t literally know each other’s pain because we are our own selves and we each have experiences that are unique to us even if we experience the same situation as each other.
I never cared, negatively, when someone who has no clue what my pain is like for me says to me “I know how you feel” as long as the person is saying it in a genuine comfort -intentioned way, a way to identify with, to connect. The person is trying to bridge a distance and have our experiences become one. And I feel beauty in that.

I don’t like when they say they know how it feels in an abrupt, careless way, just to say something or if they say it to act like they know and handle it better.
People say you can’t know how someone else feels if you have never experienced it and while there’s some truth to that, for sure there is, people often exaggerate that notion, in my opinion. There are different ways, degrees, and depths of knowing or understanding someone else’s pain or pleasure. It’s a little something called Empathy which is an ability, unless we’re a true psycho or sociopath or whatever(which most of us aren’t), that we all have to connect with and relate to each other.
Some have a deeper and a more developed ability to empathize but we can all tune into it to some degree.

While I would never say “I know how you feel” to someone or believe that I know exactly how someone else feels, I am not hurt by a truly well intentioned person saying it to me.

The first most severe tmjd cluster headache I experienced (and all the ones after)had me reeling.
I ran out of the house at 5:30 in the morning on a cool November day, after a sleepless night being ripped out of my sleep by something pounding and stabbing the side of my face, screaming all the way to cvs, not caring what anyone thought when they looked at me. It was super early so most people were in cars, probably on their way to work. I remember wearing a light pink, sleeveless shirt. My long, waist length hair flowing in the gentle breeze. I ran screaming for pain pills in the back of the store, knowing they can’t just hand over pain pills but desperate enough to implore for them. I had to hold onto things to keep me standing. I shook things on shelves, banging my hands on the counter, wringing my hands. I couldn’t remain composed.
The immensity of the pain then was unlike anything I have ever felt.
I keeled over in the middle of the pain reliever aisle.

I told the people in there I’m having some kind of bad sinus complication so they gave me a box of things for sinus pressure that they just pulled off the shelf right there like it was that easy.
I hysterically told them that that won’t work. That my pain is indescribable and it needs to end now.
I yelled to please, please give me something to make it stop right then and there. I pleaded so hard. I fantasized about jumping over the counter and ransacking the shelves for prescription pain killing pills. I was desperate. But there wasn’t much they were able to do. A couple of workers came over trying to talk to me but I couldn’t stand there and talk. I paced up and down aisles. I ran in circles around the aisles. I hit myself in the head. I pinched myself all over. I wrapped my shirt around my hands and collapsed at the knees.
I wanted to turn myself inside out.
I don’t think they have ever seen anyone act that way before. And that wasn’t even the worst of it.
When I think back now it reminds me of that scene in the movie “Liar Liar” where he kicked the shit out of himself in the men’s restroom.
“I’m kicking my ass!”
https://www.youtube.com/watch?app=desktop&persist_app=1&v=OAqBitV574c

That scene is funny, hilarious. And I’m even laughing at it now. 😀
But as easily amused as I am, as much as I laugh at everything and myself even over things that were very painful before but later seem amusing, I cannot laugh at this memory of me.
There’s not an ounce of amusement when I think back to that day or any other day experiencing that pain. There is no laughter there. There’s no amusement thinking of all the others who suffer similarly, everyday or in episodes that come and go.
I did not want to scare the piss out of anyone but my pain was immense. Cluster headaches and tmjd ones can look like a serious medical emergency but they are not life threatening as long as the person isn’t about to attempt suicide because of the pain or driving or in any other situation that can make them dangerous.

I wanted to scream through the store that this isn’t mere pressure in my sinuses, that no one understands, this is pure anguish, an agony I never knew can possibly exist in this life.

This is what Hell is. If Hell were a real place, this would be it. It was destroying my life, destroying me completely because of the violent, vicious intensity of it. I was in a full blown panic. People were staring, I did not care. All that existed then was the throbbing, stabbing, aching pain in the side of my face/ear/eye/head/temple. I couldn’t see, hear, feel anything but pain and panic. I was blinded by the violent pain. Deafened by it. Throttled by it.
I had no idea what exactly was happening to me and I feared it would never end. I wondered if it was an infection spreading throughout my head and face.

And all of this is an understatement. There are no words to properly convey the agony to the degree it really is. And no words can ever be an exaggeration. No word that I can think of bears enough weight to convey the true extent of the pain. Not even the word “agony” is adequate. The word “torture” does no justice.

And none of this is over-reacting. Different people handle things in different ways. Some things that make some people collapse and yell out may not have that effect on others. And some people do over-react to some things. But there’s no over-reacting with this. Pacing and hitting and self-aggression and screaming are the result of the unbearable pain and panic. Even strong people with cluster headaches and ones that are related to tmjd often have no choice but to act out in some way like pacing, rocking…

Some people pace, some thrash and kick and punch, some throw things and attack themselves. Some find better ways to cope like trying to hum or run in place, anything instead of the screaming and hitting.
But for people who handle it worse, it’s not over-reacting. This pain is bad.
Some people collapse with their head in their hands and scream and sob. Some can’t scream, sob, and cry till it’s over. The aggression is self-aggression, not violence against anyone else.

CryIng is not my reaction but am hysteriCal in other ways

They don’t make me want to attack any living thing, in fact, when I’m experiencing them, I often think of the others who know my pain too well and my heart breaks and I want to take it all away.

The pain is immense and the agitation and restlessness is overwhelming. If I think of the strongest people I have ever met, both physically and emotionally, there is no doubt in me that they would react similarly or have similar thoughts if they were forced to feel this pain to this extreme. There is no laying down or resting. I read that over ninety percent of people with cluster headache syndrome are restless and agitated during an attack like I am with my tmjd “cluster headaches.” Being still, laying down often exacerbates the pain. It’s just not possible. We can learn to remain more calm but when people do not stay put and remain composed, it’s not over-reacting.
Whoever says that, clearly has never experienced something as horrific as this. Experience it first, then see if you can tell someone like me to stop exaggerating.

Experiencing something like this then telling me I’m over-reacting, is somewhat more acceptable than someone who has never felt anything even remotely as painful and having the gall to say I’m over-reacting. I’m sorry but no. It’s bullshit.

I lose weight like crazy when I have these headaches. I am naturally a very thin girl but I consume a lot of junk food and while I don’t put on much weight, I’m still not as thin as when I don’t eat as much junk food. I don’t eat for days when I have them and in just two days I lose a noticeable amount of weight. I lose weight very easily but I don’t put on much weight no matter how much I eat day and night. And people ask me why I am losing weight like this and I try to explain but of course no one understands because who understands this? I don’t even understand it! I seriously have had people tell me they would love to have tmjd or cluster headaches!!!!!! So they can be motivated to not eat and lose weight!!! People have told me they are envious of me for having a good way to get thinner! I don’t know if I want to laugh or cry when I hear this.

When I have these headaches there’s really nothing to help me reduce the pain so I have to find ways to cope. Sometimes I try icy hot cream or patches or unisom sleep pain reliever desperately hoping to touch the pain somehow mitigating it even just by a fraction or help me focus on another sensation somehow. It’s often futile. Nothing touches it. I have a stress ball I squeeze to try to focus on that sensation a bit. I have a plastic massage thing I press into my face and head. I also found that walking and other physical movement helps, not to lessen the pain but to help me endure it better.

There are better ways to handle these head attacks than freaking out, destroying stuff, screaming….It may take some practice and a lot of strength and courage but there are better ways, some people are able to remain more calm and find that it’s better that way. I’m scared to remain calm and always think it will make it worse or that I will go insane and not find my way back. It’s frightening. It’s possible to move physically but not get hysterical. I’m getting better with it. The last three days I think I did very well. But even though they were unbearable and devastating these last three days, they weren’t as bad as others I have felt. Very, very excruciating though. I wanted to scream. I really did. I tried to consciously think, how can this teach me, what can I learn, how can this strengthen me and help me be more mindful in general….it’s not easy and it’s so terrifying but I managed. I am managing.

I have no choice but to endure these. They are thrown at me without my consent. What else can I do? I can break down and scream and sob hysterically and I can also be strong and know I can go on. It’s ok to collapse but I will always get back up.

I read one suggestion to help people cope with cluster headaches is to get a basket filled with different kinds of material strips like velvet, satin, wool…and just mindfully feel each one til each headache ends. I think this seems like a good idea.
I have an aversion to touching soft material. I find it disgusting rubbing on it so it’s out of the question for me to fill a basket with soft material strips but I can find another object to feel the textures of. If rubbing that material would take the pain away or lessen it, I would be rubbing it day and night.

I also have Buddhist Mala beads to recite positive, life affirming affirmations or quotes for each bead to help me cope. The point is to touch each bead and think/say a positive thought and meditate upon that quote or affirmation. This helps me focus on that and not just the headache. It’s so difficult though. But it helps to instill hope in me. It’s something positive to engage in. It’s a way to cope.

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For other kinds of pain related to my condition, I practice guided imagery and mindfulness meditations for pain relief and gratitude but for these tmjd cluster headaches, I can’t, since I can’t hold myself still.

I thought my first attack was bad. And it was. But since then I have experienced even worse ones. But now I know what they are and that the way I handle and have handled them is actually commonplace in people who have similar headaches. Some of them break their own bones while hitting things because of the anguish. Like me, they wake up screaming, they have strong urges to bang their head against walls and rip their eyeball out of its socket. They scream and sob and cry and pace and shake on the floor, hitting their head over and over. They shake their hands and want to turn themselves inside out as this hand-wringing pain throttles their entire existence. I know.

When it finally ends, the physical and emotional exhaustion kicks in and I can sleep for days if I let myself. I am wrung and shocked and dazed.
But so thankful that it’s over.
Sometimes I feel especially elated for days when they end. And sometimes I’m just in a state of shock or a fog for a week.

It’s frightening and the most physically painful experience of this life of mine. Nothing can hurt me more.

Sometimes I wake up thinking about those head attacks even when I’m not having one right then, even when I haven’t experienced one in a while. Or I lay in bed at night wondering how have I survived each one and how will I survive the next one. And the next one. And the one after that one….but I know I can.

It usually, (almost always), happens at night after I’m already in bed/asleep but it can and does happen anywhere, any hour. It feels like my eardrum is about to explode. And I feel so broken just thinking about it.

I remember having an attack some years ago in Pizza Hut one afternoon, standing in line. I had one the night before. I was waiting for food with my mom when it struck the left side of my face. I ran out before I could make a scene. I ran around to the side of the building and collapsed onto the ground. I was so overwhelmed in despair. I had no clue how I was going to survive what was coming to me. I knew it would soon escalate as these headaches tend to do. And I held my face in my hands laying in a ball on the ground in front of the big glass window. I got up and ran around in circles, back and forth, hitting walls and the ground, trying not to scream and become too hysterical, I kept thinking how am I going to survive this for as long as I live when it keeps coming back.
This was back when I feared I may actually kill myself during one, shortly after I was diagnosed, not because of depression.
This is when my depression started to get generally much better and I was so happy, finally happy to be alive.
I wasn’t depressed. My suicidal inclination was only because of the unbearable physical agony and only when the physical torture was currently happening. It’s torture. I don’t want to kill myself when I have them because they will keep coming back; it’s because the moment they are occurring is so unbearable. It feels like it will never, like it can never end. And like I just cannot take another second of it.

I know I won’t kill myself now. I wasn’t depressed when I seriously considered killing myself while experiencing the headaches but I wasn’t as strong as I am now. I realized this more last night at work during an attack.

It’s moments like this, being attacked, where I truly cannot care what people think of me at all or care about anything at all. Under any other circumstances I would have been embarrassed acting that way but as I have previously stated, pain like this unleashes something in me, something that knows no bounds, something that can go days and days without sleep day or night, something that roams the night restless and agitated, something that wants to break down walls, someone who freaks out in front of people without an ounce of embarrassment about what they must think of it. Anyone and every single person who has ever known me knows how calm, quiet, laid back, easy going I am, how I handle things more smoothly and calmly than most people, how nothing much gets to me, how I remain composed, especially physically, and patient in all kinds of stressful and distressing situations, how I never lose my temper too much, like ever, even people who just meet me can often automatically sense my calm, shy and quiet and gentle nature, my warmth and light. Every teacher in school would tell my mom that, all the kids who took the school bus with me would tell my mom, all the people at work were shocked how calm I was after I had a gun held to my chest and my life threatened by a criminal who wanted to steal money.

So for me to act like this? You know it’s something. Something indescribable, something horrifying, something devastating.
Something incomprehensible.

After the incident in Pizza Hut, I went home and took prescription pain pills that weren’t mine that someone gave me. Nothing happened. The throb remained.

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(this is not my photo but it’s cute isn’t it?! :-D)

Later I took them again and they took the edge off but it quickly returned. I sat in my bed alone in my house, feeling as if my life was over. My face swelled up on the left side because my condition can cause that. I was afraid to touch my face so I kept pinching my legs and squeezing the bars on my bed. I hit my head over and over as quickly as I could with my hand. I screamed hysterically. Hitting myself again and again and again.

It was better then because I lived in a different and bigger house where it was easier to scream without people hearing well.

I stayed awake for four days straight with it, not one second of sleep til the worst of it finally ended after four days. But I stayed in severe pain for twelve days straight. I stayed positive for the most part. As positive as someone can in a situation like this. I did not let it depress me.
I knew that I was able to handle it because of all the years of depression that strengthened me. It turns out depression is good for something! 😀

I found beauty and joy in every day, anything I was able to grasp onto. And I continue to even when it’s incredibly painful.

There is an incredible and terrifying loneliness that stalks me sometimes when I’m up at night battling a tmjd cluster headache. Knowing all the world around me is fast asleep while I’m up pacing through rooms trying hard not to scream and kick walls so I don’t wake my family or the neighbors. It’s just me. And my hellish nightmare while I’m wide awake.

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(this photo is not mine – it’s Edvard Munch’s The Scream)

Pain disorders are horrifying and so devastating and I would never want one for me or for anyone else ever. But when we have them, we can’t change it. All we can do is let them strengthen and teach us and just hold on. It’s difficult to allow that but it can be done. While there will be moments of dark despair, we can learn to live in light and love in general. And that’s what I do. Life can be loved even through the pain. And it’s important to make a conscious decision to go all out looking for everything to love when pain is taking over. It’s nearly impossible to do that with a cluster/tmjd cluster headache going but it’s important to remain positive in general.

We can choose not to let pain conquer us. And to get back up when it does conquer us some moments. It can ravage our body but we don’t have to let it ravage our spirit.

It’s so difficult and scary but even with all of this pain, I am generally a very happy girl. It does get the best of me occasionally and I am so broken. But I still find strength and joy and courage and happiness in me.

I don’t believe that it usually matters whose pain is worse. What matters is awareness, empathy, compassion, education, understanding, caring.

I don’t like pissing contests, like my pain is worse than your pain and this kind of pain is worse than another kind pain and this painful experience is nothing next to this one and….I can’t stand that. I see/hear it around and it’s uncalled for. There’s usually no need for comparisons except sometimes to explain things and to educate, to get people to understand, to put things into perspective like I’m doing here, not to have frivolous contests to see who is more of a victim or has it worse or to see who deserves more sympathy.

While those head attacks lead me to think of every other painful experience I ever had as “nothing” next to that, I wouldn’t think that someone else’s painful experience is nothing. It’s just that for me and others who know this pain, once we know it exists, nothing outside of it we ever felt comes even close to being to that level. Someone can hurt less and still suffer.

Everyone deserves compassion and empathy and even if you have never been in serious pain, you very likely have felt some kind of pain and it’s still pain. No one’s experiences should be invalidated, in my opinion.

Some things, like cluster attacks are way beyond excruciating to everyone who experiences them. But there are other things that may be very painful to one person and not another and something that appears to be less painful than something else, may not be. We can’t always judge correctly for how something looks or sounds or how something is to us.
And we can draw on our own experiences no matter how different or similar they are to someone else’s, to empathize with each other to some degree.

When I am experiencing a tmjd cluster headache or even less severe but still unbelievably excruciating pain, almost nothing else in the world matters to me anymore. Other problems are no longer problems, I have almost no other desires but for the pain to be dramatically reduced or end, my pain and everyone else’s. I know when I’m having one of those that if I could I would take away everyone else’s head/facial pain even if it means I have to endure even more of it and bear the burden for all of us. I would. I don’t want to imagine the terrible pain the others feel who have this. All the trivial little things I once thought were something are now nothing. Sometimes when my tmjd pain becomes nearly unbearable, I manage to notice even more how very beautiful the world around me really is, how blessed I was/am, how much beauty I was overlooking before the massive pain hit and consumed all of me, before it became unbearable. Before the pain reaches the point of utter, ridiculous madness to where I can’t notice much of anything else, I notice even more than usual, little things, like the moisture on soda and water bottles and cans, the city lights and sounds in the streets, cars and trucks, and people laughing, the sounds of fans swirling…beautiful things I sometimes overlook and am desperately sorry for it when the severe pain hits me hard. I can’t take pleasure in them to the depth that I can when I’m not in that kind of pain. But the pain triggers me to notice them. I am able to tap into these thoughts and feelings even when a headache isn’t attacking but the attacks remind me even more. It teaches me to be more thankful. Each one is another reminder. Not that I want these reminders but since they’re there, I will use them to my advantage.

And when I experience something unpleasant, I sometimes remember to stop and think but at least I’m not having a cluster/tmjd-cluster attack. It doesn’t always cure my problem I’m having but it helps me have a better attitude/perspective.

I noticed that after I have these headaches, for about a week after they end I seem to not care as much about things and especially what people think. I don’t obsess over what people think anyway but to some extent I care, but right after a “cluster” flare up it’s like I can’t even bring myself to care at all. For example, I don’t always pay attention when I’m walking outside and sometimes I don’t see someone I know and don’t say hello then realize after the person walks by and I always care thinking the person probably thinks I’m rude. But after the headaches it’s like whatever. Let that person think that. I develop a kind of “take no shit” attitude towards life like “fuck it or don’t give a fuck” attitude for a while.
And when I get physically hurt no matter how much it hurts it’s almost nothing to me. One day my finger got slit open and slammed when a milkshake machine fell on it at work and was bleeding and bruised and swelled and I couldn’t even care because a headache like that just ended days before.
If I never experienced those head attacks, I would still care about stuff like that.
And more recently, scalding hot soup spilled on me and burned the skin on my leg and it hurt so badly, a somewhat similar pain to the tmjd cluster attacks, but nowhere near as bad, it burned worse than hell, then it blistered my skin a bit and the pain was bad and was just going and going but one of those headaches ended a few days before and the burn pain on my skin was just nothing even though it really hurt. It hurt but I had not as much of an emotional reaction to it as I would if not for those head attacks. It was like a kind of emotional detachment to the physical sensation. It’s like I can handle anything now.
Anything. And it’s not a completely good thing.
I’m not even writing that to be inspiring or to be positive.
It is good in a way but it comes at a great price. A price that’s not worth it but since I had no choice in the matter, I will look at the bright side. That, I do have a choice in. And that is inspiring.

I’m still kind and caring after that but just not as caring in some ways about certain situations. I start to have a slightly altered perspective and become more forgetful because of the psychological consequences of experiencing such wretched pain.

And an interesting thing is just imagining those headache attacks even when I haven’t experienced one for a while can lead me to adopt that “fuck it” attitude again like everything in life is just so trivial compared to those headaches. And it’s like just about everything else comes second to that pain.
And it’s interesting to see the world going on as usual with everyone just going about their lives like nothing but I’m stuck frozen in the knowledge that some kind of monstrous and hideous pain exists that most no one else in this world knows about, at least not in an intimate, direct way. Way too many people do know this pain I speak of. A very small percentage but just one person is one too many. But the fact that it’s so uncommon that most people probably haven’t even heard of it and that it’s so bad no one can even imagine really, it makes it feel like a secret pain. A secret world only very few people have access to. Access that no one wants.

Less than one percent of people in the general population have CH. Many go undiagnosed or misdiagnosed for years. It’s often mistaken for a sinus problem though it’s infinitely worse.
Many more people have tmjd but almost never have these headaches I get and usually have no other serious complications.

Almost everyone knows physical pain, even severe pain, probably. Breaking a bone, pulling a muscle, banging your toe on a table leg, stepping on a thumbtack or nail with no shoes….but this head pain I write of is like another world, a world most people have never entered and I desperately hope never will.

I so desperately want no one to ever feel this that I would take on more of these headaches just so someone else can be spared if that’s what it would take. I don’t want to imagine someone else ever feeling this. Ever. It makes my skin crawl to think of.

Sometimes when I’m outside I look at all the people on the streets around me and I think of cluster headaches and I wonder “does he know what they are?” “does she knows this pain?” “would they ever understand?” And I’m sure they don’t and never will and I feel a sense of protectiveness and a sense of heartbreak knowing that any one of those innocent people can be struck at any moment with this horror.
Just like me.
It’s not likely but I just think it. And I want to stop it and shield anyone I can against this agony.

I feel it tugging on my heart in my chest as I write this. Just knowing this pain exists just stirs something in me I can’t explain, something I can’t get over. I feel my heart sink.

I’m not a victim of this pain or a victim of my body. I am blessed with a life and this beautiful body and I wouldn’t give my beautiful life or my beautiful body up to have a different one instead, this is just something that comes along with me being given life. I choose this life over no life. If I had a choice to be someone else and not have these headaches I would not. I choose me. I choose this life, the beautiful one I have been given. I get angry, devastated, I feel that no one should ever have to endure this. It feels so cruel. But I see beauty and love and hope and joy glimmering through my darkness.

I see light. Light through the blinding pain.

I want this pain to never come back to me.

And I definitely complain about this and there are moments I definitely feel sorry for myself. I won’t even pretend like I don’t. I piss and moan about it, I get angry, devastated, furious.

And that’s really ok.

But I don’t make a habit of dwelling on the negative or bitching too much. I don’t usually feel sorry for myself and wallow in it.

Suicide is not the answer to these headaches or anything else and it will never be the answer. We are strong enough to endure it even when it doesn’t feel like it. We can empower ourselves and each other.

If you are in pain of any kind, whatever the nature, severity, or frequency, I wish you much hope, love, strength, consolation, courage, and healing. It can be so difficult and lonely and agonizing but we can prevail and go on.

“You can be greater than anything that can happen to you.” ~ Norman Vincent Peale

“When you come close to sellin’ out, reconsider.” ~ LeeAnn Womack

Xoxo Kim

On Pain {Norman Vincent Peale}

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“You can be greater than anything that can happen to you.” ~ Norman Vincent Peale

Last night I posted something about my experience with unbearable physical pain. 
It is super long and much longer than I would have liked it to be but I wanted to share much of my experience with the agony to get the point across and express my pain.
I want to thank the people who read/liked it. Thank You so much! I appreciate it deeply. I know most people don’t care to read extra extra long posts and most of my posts will not be that long. 😀 Only when I have a real lot to say all at once. Lol

Here is another post on pain. You don’t have to read my previous post to make sense of this one. 

It’s interesting how an extremely painful experience can humble us, deepen our empathy, allow us to be more in touch with and aware of the pain and joy of the world but it can also go the other way. It can lead some to become arrogant in certain ways with a hardened heart, less empathetic, less patient with those who seem to not have experienced as much pain. It can trigger some people to sometimes regard other people’s problems as trivial or not as worthy of compassion compared to their own extreme pain. I don’t think that reaction is wrong or that all people who think that way are completely heartless or that we should all have the same empathetic reaction, necessarily. It’s just my observation.

I can completely understand how someone’s pain or sickness is so bad the person just wants to scoff at someone whining over something so frivolous it seems ridiculous next to what that person is experiencing. I’m not innocent of this myself on some occasions.

We all react in our own way, ways that are best or appropriate or come easily for us based on our experiences and ways of coping, we’re all different and handle things differently and I don’t try to force people to be a certain way or usually judge negatively for how someone else reacts when it’s not how I would react myself.  

Some people and some things people say are cold, heartless, callous, and outright cruel to others. And I don’t support or promote it but I understand not everyone will understand and care.  And I still embrace them in my universal love. 

My reaction to very painful experiences is almost always deeper empathy or becoming more in tune or aware or being reminded that there are so many others suffering like I am and worse and less who need all the love, compassion, and empathy they can receive. 

I don’t believe that physical pain is necessarily not as bad or is worse than emotional pain. They can both be severe, moderate, or mild, depending upon the kind of pain, the person, the coping mechanisms someone has and other circumstances. 

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I was reading words that inspired Norman Vincent Peale. He inspires me and I want to know what inspired him. 

I am not religious or spiritual in a way that has to do with the supernatural. I am an atheist. I don’t believe in the afterlife. But I find inspiration everywhere, even in religious writings and things that people who believe in some god or gods say. 

Norman Vincent Peale was a very religious Christian man and well known minister and he is known for his work, “The Power of Positive Thinking.”

I came across his words on pain & suffering.

“Pain and suffering have wracked humanity throughout history. Evidence of arthritis has been discovered in the earliest skeletons of the past. 
My friend Lloyd Ogilvie, distinguished pastor of the First Presbyterian Church of Hollywood, California, once said that he had learned several important lessons from personally experiencing pain and suffering. He found he grew the most spiritually during those ordeals.” ~Norman Vincent Peale

“No one welcomes pain. But, rightly faced, it can bring about great good. And we can triumph over it.”

He writes of Doug Williams, quarterback for the Washington Redskins, and how the man endured hours of dental surgery the day before the 1988 Superbowl football game. Then during the game, he injured his knee. But he still led the team to victory, breaking one record after another.

That is truly amazing!

Dr. Peale states that when we are struck by pain, we often ask the wrong questions, such as ‘why me?’ But more positive and productive questions are ‘What can I learn from this? What can I do about it? What can I accomplish in spite of it?’
There is deep wisdom in this and it’s so very motivational and helpful.

I have never asked “Why me?” I don’t want it to be anyone and it’s not “me” for any specific reason. I just got this disorder. It’s nothing personal against me, not a punishment I deserve. It’s just something going wrong in my body. Why not me? Why anyone? Because it’s the way our world works.

Some people get terrifying and agonizing sicknesses and disorders, both physical and mental, while others are blessed to never know that pain. But we are not victims unless we choose to be or unless we’re dead. To me, the only victims are dead. That’s not to say living people aren’t in despair and agony and are not suffering and do not deserve compassion. It’s to say no matter how dark it gets, no matter how deep the despair is, we can always choose to get up and pro-act as best as we can.

Here are some quotes Dr. Norman Peale loved by other people:

“In times like these, it helps to recall that there have always been times like these.” ~ Paul Harvey 

Yes! If you survived before, which you have since you’re here, surely you will survive again and again and again….when your pain comes in waves or clusters or patterns or just flares, just ride each wave like you’re on top of the world. As the Beach Boys say, catch a wave and you’re sittin’ on top of the world! Oh how easy it is to say and think this when things aren’t so bad but even in pain, sickness, fatigue, depression….it can be done. On a Facebook page for cluster headache support, education, and awareness, I saw this….

“On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for surviving bad days so far is 100% and that’s pretty good.”

“It takes more distress and poison to kill someone who has peace of mind and loves life.” ~ Bernie S. Siegel, M.D.

Yup! Physical pain and illness are not depression or a negative attitude. They can contribute to and trigger that but they are not it. They can be separated.  It’s important to keep in mind that we CAN be happy and joyful even in pain. There is still beauty. We may sometimes have to look harder but it’s there. Even with emotional pain, we can train our brains to seek out beauty and some sense of joy even when it’s hard.

“Diseases can be our spiritual flat tires – disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.” ~ Bernie S. Siegel, M.D.

Again, pain of any kind can teach us, strengthen us, deepen us, and guide us.

“One cannot get through life without pain….What we can do is choose how to use the pain life presents to us.” ~ Bernie S. Siegel, M.D.

This says it all! 😀 Let’s take all of our pain and struggles and use it all to our advantage. 

I found a few things that help me cope with the pain and the psychological consequences of having an extremely painful disorder. One of them is art journaling, writing, painting, gluing, arts & crafts…another is reading positive quotes and other things and sharing them. This also helps with my depressive disorder. Sometimes just seeing a positive quote uplifts me even when I’m not feeling it completely. 
We don’t always have to be or feel positive but it’s good in general to maintain a positive attitude, in my opinion. 
And sharing quotes and happy photos to help others helps me also. I don’t share positive things to pretend everything is good, I share them because it really helps me often and it can inspire anyone who may see it. Also I try to find songs about physical pain to help me cope, there’s one called “Headache” by Frank Black and one called “Touch Me I’m Sick” by Mudhoney. And one called “Novocaine” by Green Day which may be about emotional pain but it can also apply to physical pain.

“Take away the sensation inside
Bitter sweet migraine in my head
Its like a throbbing tooth ache of the mind
I can’t take this feeling anymore
Drain the pressure from the swelling,
The sensations overwhelming”

Don’t I know it!

 And one by Alice Cooper called “Pain” about all kinds of pain. Alice is singing as if he is Pain itself singing. 
“You know me, I’m pain.” 
“It’s a compliment to me to hear you scream me through the night, all night, tonight.” 
“I’m pain
I’m your pain
Unspeakable pain
I’m your private pain”

He also has one called, “The Sharpest Pain” not really about physical pain but still, deep, agonizing pain.

Lol what a gloomy subject to be writing about but pain is part of being alive. Sometimes, even sharp, aching, throbbing, burning, wretched, overwhelming pain.

Much love, hope, strength, comfort, joy, and healing to you who are reading this no matter what your situation is.

Xoxo Kim 😀

Serendipitous Strength

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(that’s fake blood on my face for a haunted house attraction for Halloween)

I love funny and silly surveys for blogs and Facebook, like a list of weird, stupid, funny questions…would you rather be ridiculously rich financially but butt ugly physically or amazingly gorgeous, beautiful beyond belief physically but dirt poor financially? Would you rather eat hair or lick a toilet seat? Would you rather be in a dark, creepy room alone or in a well lit room with Michael Jackson? lol They’re funny questions. I would choose to be poor and beautiful. And I would lick the toilet seat over eating hair any day. Loose hair is disgusting. Aack! And I like Michael Jackson but not creepy dark rooms alone so I would choose the lit up room with him. ;-D

But anyway….i came across this question

Would you rather be buried alive or stabbed to death?

Horrible thought, right?!

But I find it enlightening. It provoked me even more to think about the strength deep within me that I accidentally found and accidentally developed.

I would choose to be buried alive.

Not so long ago, I couldn’t even imagine saying that. I just couldn’t imagine.

First of all, if I am buried alive, maybe I can find a way out or someone can find me before it’s too late. Being stabbed is so violent!
There are rare(at least I hope being buried alive is rare!!!) cases where someone has been buried alive and somehow escaped or was found before it was too late.

I used to have an extreme fear of being closed in with or without others there with me. Closed in anywhere. Even a large room or building. I would avoid closed in places like the plague. Then my fear got somewhat better when I was eighteen years old in college. In this one building I wasn’t aware that we were allowed to use the stairs. It turns out, we actually were but I never knew til a long while later. Everyday I had to go in that building I had to desperately hope there were others waiting to go on the elevator when I was because I couldn’t bring myself to go on alone. I used to go early and just linger around the hall waiting for someone who was going on. (creepy, right?! :-O lol) I never said that I was waiting. Just when I saw someone going on, I would too. If the person got off before the floor I was going to, I would get off too then walk up the steps to the floor I was going.

Then I met a girl. When I was 18 years old. One who had the same class and we got talking to each other and I found that she had the same problem!
One day I got to the elevator and she was waiting too! And she told me she’s seriously afraid of small places and won’t get on without someone else! What are the chances?! I was embarrassed at first and wouldn’t really tell people but I opened up about it when I met her.

We conquered our fear together. 😀

I always thought of this fear as a weakness and never met anyone else that I knew of who has it this bad, my dad is like this but his never seemed as bad. Everyone I knew could get on with no problem, it seemed.

And when I met her, I was sooo happy! Lol Also, we were both very shy until getting to know someone better but we both had no problem with public speaking because it’s just something we had to do for class. We both loved meeting people we never met but were often too shy to initiate socialization first. But somehow we found each other! I haven’t seen or talked to her in many, many years. But the impact is everlasting. ❤

After that, I got more used to going in small places, elevators with people and I was mostly only panicked when I was closed in alone. I often had nightmares of being closed in or trapped somewhere alone.
I couldn’t even stand walking by elevators or being in the same building with one. This was always the only thing that scared me about hospitals. I would shake walking through narrow staircases even with people. I felt like my body was turning to jelly.

One day when I was a teenager I had to get on an elevator alone. I was in the US Constitution Center at some event and the only way to leave the building was to get on an elevator. They said I had no choice. There was no one else around and the security guard said I had to get on the elevator so I did. I went into a serious panic and I pressed my fingernails into the skin over my hip bone and just kept scratching until it bled and the doors opened. I was so scared, that was just what I did, unconsciously.

I never worked on this fear specifically but during my personal development journey, my quest to find healing, working on myself to help heal my depression and cope with tmjd “cluster headaches” without realizing it, I was conquering my fear of being closed in. With my personal development plan I teach myself and train my brain to know I can handle and conquer anything. To know I will always be free no matter what position I’m in in this life. To know life is a gift no matter what. To see positivity and opportunity in any situation no matter how dreadful. I trained my brain with meditation and quotes and music and songs and writing to stay calm and composed for the most part, in any situation no matter what, no matter how painful physically or emotionally. I still struggle with this a bit sometimes, especially with severe physical pain. I’m much better at handling deep emotional pain than very severe physical pain. A certain level of physical pain that I experience occasionally can still seem too much to bear.

It’s at a frightening level and it’s not common that people ever feel it to this extent. Not even prescription pain pills can touch it.
But I work on myself constantly and even when I’m freaking out aggressively over a tmjd cluster headache, I still keep telling myself I will survive.
I was trying to heal my depression and cope with it and cope with those head attacks.

And much to my amazement this was helping me all along with my fear! My phobia(i wasn’t actually diagnosed with a phobia but it may have met the criteria, I don’t know for sure) wasn’t destroying my life because I was just able to mostly avoid small places but there were some occasions I couldn’t and had to be closed in somewhere.

Some people have a phobia where they can’t avoid the thing they fear or even if they can they can’t help but dwell on it constantly and it runs their lives. That was never me but there are occasions I embarrassed myself in public, especially as a kid, when I had to go on elevators or narrow staircases. And occasions I was extremely fearful knowing I had to go in a large building where there’s elevators. Somewhat recently I went on a job interview. I did not get the job but I had to go on an elevator by myself, they wouldn’t let me on the stairs going up, I asked, I was told no. I wanted to run out but I had the interview scheduled and I knew it wouldn’t be good to have them waiting and I never show up, years ago I would have been out the door so fast with the interview the last thing on my mind. So I reluctantly got on the elevator, alone, and while my heart started to speed a bit because of being closed in and for a few seconds I was overwhelmed in immense fear, like panic, I handled it so well. No panic. No breakdown. Just staying calm. It was so surprising. And just as much of an accomplishment as getting a job! Maybe more?
It wasn’t a happenstance. I worked to get to this point. (though unknowingly lol) I am so strong now. In so many ways.

Then leaving the building I had a choice to take the stairs or the elevator. Just a couple years ago I would have taken the stairs without a second thought. Even last year. But on the interview I made the CHIOCE to take the elevator alone to get more practice and was even more calm than the first occasion going up! What a great accomplishment for me!
It may not seem that big to some people but for someone like me, it is a tremendous thing.

Also I don’t like closing doors to small rooms even in my own house but in the bathroom there are parakeets flying around and we have to close the door. I was getting a shower one day and had to close the door. The handle is broke and I got locked in! I went into a bit of a panic. Not a full blown panic, but an intense fear, I guess you can say. Not how people with panic attacks do. Not that bad. But I was pulling the door and banging on it hoping someone would hear. No one did. But I calmed down and reminded myself. Life is beautiful no matter what. I have the sunlight streaming in the window, I have my senses, the parakeets, meditation, Buddhism and Stoicism ….the window is too small for me to fit through so that wasn’t an option. And it’s on the second floor, it wouldn’t be safe to jump. I don’t want broken bones or whatever. But just some years ago I would have jumped if I could, risking injuries. I was there for like 20 minutes before I finally got the door open.

A couple nights ago I went to the Philadelphia Eastern State Penitentiary with my sister and my dad for the Haunted attraction. It’s a real abandoned prison that is in a state of semi-ruin, almost 200 years old. It’s said by ghost investigators to be truly haunted all year. Lol It’s open all year but the rest of the year is just a prison exhibit to learn of its history, which is very interesting.

For the Halloween attraction every October, we get to walk through the dark prison inside and out in the courtyards when it’s at night, in groups. It has lights flashing, people screaming, monsters walking around, “prisoners” trying to attack us through their cells, monsters, all kinds of creepy, scary stuff. There’s lock down, the infirmary, night watch, an abandoned bus in a junkyard and other attractions we walk through. Things randomly and unexpectedly jump out at us, sometimes screaming and with weapons! There’s 3D things and people jumping through walls at us. They come right up to us with weapons holding them over our heads or up to our faces. Lol Isn’t it insane that people actually take pleasure in this? But something about a certain kind of fear is quite thrilling for people. Like amusement park rides and sky diving. And scary movies & books.
Also, I think our brains are not aware of the difference of what is real and what is not. Seeing, hearing horror in movies and things, the human brain cannot distinguish the difference. We know it’s not real but some part of our brain does not know and it has a negative/fearful effect on is, even later. That’s why too much fake horror isn’t good for us. I used to have a psychiatrist who told me that and I noticed it too when I read too many horror books close together. It has an unpleasant effect. He advised me to avoid fake horror all together. It’s not good for anyone and especially those prone to anxiety or depressive conditions.

It’s fun. And scary. I’m not afraid of monsters and ghosts and stuff but it’s kind of startling to have people looking all dead with blood all over them, screaming and with weapons jumping out in the dark at me with just an eerie glow around the prison.

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(inside the prison – imagine walking up this long hallway knowing at any moment something or someone can and probably will jump out at you. Lol creepy!)

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(it was the perfect night for a haunted house – or prison – because there was a full Moon or almost full Moon and I kept seeing it when we walked in and out of the prison into the courtyards)

They’re not allowed to touch us and we are not allowed to touch them. But this year they had something different where the bravest of the brave can wear a bright pink glow necklace they give us and this gives the monsters (the actors working in the prison) permission to touch us, grab us, snatch us, hold us back, separate us so we lose our groups, toss us into secret passageways, and do other terrible stuff. I haven’t been there in a couple years until a couple nights ago. So this was new to me.

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I love haunted houses and stuff but my one fear has always been being separated and ending up in a small, dark place alone. This still scares me. I fear dark places as well but not as much as small or closed in places.

But I decided to be brave that night and wear the necklace. I was abducted, strangled, held back, got my hair pulled, forced by two monster dentists to sit in a dentists chair so they can pull out all my teeth…they put the loud thing all the way to my mouth then I escaped!

I was almost forced into a small cell and into a weird tunnel but I ran screaming. And the monsters laughed at me. Lol

Most people did not take the necklaces and some who did decided to take them off and toss them so the monsters could no longer touch them. Even my dad took his off and hid it.

Chicken shits. Lol ;-D

I was one of the brave few who kept mine on throughout the entire prison, not once taking it off. Yay me! Lol Although at one point the thought occurred to me but I sucked it up and kept going.

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(me with my medal of honor lol)

It took nerve. Especially when most people were not wearing them so there was not many choices for the monsters and so the few of us who were wearing them were the ones who kept getting all the attention. At one point I was the only one wearing a necklace where I was and two monsters came up and said since I was the only one wearing one right there, I was the “chosen one.” I was snatched while everyone around me ran away, even my dad and sister (thanks everyone! Lol) and had my hand held under some device that came down and was supposed to pierce my hand but when it touched me it was just rubber. Lol

I knew I could have been dragged and possibly tossed into a secret, small, dark place alone. But I took the chance. I would have NEVER ever been able to make that choice, probably even a year ago.

The thing that really inspired me to take and wear the necklace is in the beginning a monster said “you came here for fear so get all the fear you can get…” encouraging us to take the glow necklace. This also inspires me in general, to take advantage of every opportunity in life to live to the fullest, whatever “the fullest” is to me at that moment. To soak up all I can, all the thrills, the beauty, and feeling there is to feel.

Being alive is an opportunity to take in everything we can, to feel. To live. To experience. To grow. To love. To make mistakes. To learn. To feel pain and beauty, sorrow and joy. Misery and happiness. To take full advantage of our senses.

I been to this prison for the Halloween attraction a couple occasions years ago. The first day I went for the haunted attraction I was hugging, holding hands with, and clinging to people I did not know. Lol It was my first year in college, I was eighteen years old, and I went as a group with other college students, all girls and one boy. The boy wanted us to go first because he said he was the only boy. But we told him no, since he’s the boy he had to be in the front.
Lol we were holding onto each other like our lives depended on it.

It’s one of my favorite memories. And after the event was over and we were walking up the dark street outside the prison, a drunk person jumped out at us and we all screamed. He wasn’t trying to scare us and just looked at us like we were all nuts.

Now, being buried alive would be way, way more terrifying than going on an elevator for less than a minute! And being locked in a room.
And way more horrifying than a fun tour through a haunted prison for Halloween.

But I know now that I would survive emotionally as long as I survived physically. I would go into a deep meditation and have my Buddhist and stoic principles and my life philosophy and inner Truth, my authentic Self to help guide me til I become physically free. I would still be frightened and panicked at some points. And maybe feel as if I can’t go on but I know I can. I have my life philosophy that I work on every single day without fail. I can survive anything as long as I stay alive. As long as I’m free in my mind, I am free. Truly free. You can be free too if you’re not already, with lots of hard work and practice. We don’t have to allow anything or anyone to restrain us.

If you work to heal one aspect of yourself you can be strengthening yourself in deep ways you don’t even realize in other aspects as well.

I want this for everyone. Whatever pain, physical or emotional, whatever fear or problems, I want us all to find a way to conquer it. A way to cope.

I never ever thought my fear of being closed in could be vanquished but it is. It’s also not completely cured. My heart still races in small or narrow places, sometimes I still think there’s no way I can be closed in alone and survive with my sanity intact, I still avoid closed in spaces for the most part, but I conquered it and can handle it now. ME! I can’t even believe it!

If you are ever in a situation you are 100% convinced without a doubt you can’t or won’t survive, remember, it feels that way, it’s not true. I never knew I can ever survive the depression and tmjd cluster-like headaches but somehow I did. I survive each one. My conviction was deep, that I couldn’t survive but I do survive and now my conviction is even deeper that I can and will survive whatever comes my way.

And you can too, whatever it is. It can get better. <333 ❤ Much love, hope, & strength to you.

Xoxo Kim

And then a hero comes along with the strength to carry on….

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“I choose to FIGHT BACK! I choose to RISE, not fall! I choose to LIVE, not die! And I know, I know that what’s within me is also WITHIN YOU.” (Mayor Pappas, “City Hall” movie quote)

As I have mentioned in previous posts, I struggle with a severe chronic facial pain disorder. It’s bad. And currently incurable with no known definite effective medical treatments.

“Pain is no evil, unless it conquers us.” ~ Charles Kingsley 

There are some treatments and home remedies that help sometimes. I’m not always in agony but I do have flare ups now & again that are just pure, raw agony. Agony beyond belief.

“Pain can be endured and defeated only if it is embraced. Denied or feared, it grows.” ~ Dean Koontz 

A kind of anguish that brings me to the point of despair.  I can’t believe my body is capable of experiencing so much physical anguish.   I can’t believe anyone can endure this.   It’s incomprehensible. It’s the most physically painful experience of my life. 

“While there’s life, there’s hope.” ~ Marcus Tullius Cicero

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And when this happens, sometimes I feel that I’m wishing I were dead. But as I have also mentioned, I also struggle with a severe depressive disorder that strengthened me and enlightened me. It awakened me.

“Today I will see something positive in all situations.”

I have developed a life philosophy that helps me see that life is a true gift no matter what. No matter the wretched agony I am currently enduring.

“You can be greater than anything that can happen to you.” ~ Norman Vincent Peale

So last week in the middle of the night, lonely & grieving over the loss of my previous state when I wasn’t in as much pain, I thought I wanted to be dead. It was a very brief thought.   But I soon realized that it wasn’t true. It felt that way for a few seconds. And I remembered my own life philosophy that I have invested so much in, building and nurturing and maintaining.   All of the things I learned. All of my strength & inspiration.

“Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.” ~ Emily Dickinson 

And I kept going, kept telling myself life is good and I kept my hope alive that my severe pain would end or somehow I would learn to cope even though I couldn’t even begin to imagine how anyone can cope with this.  It’s just so agonizing.  

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” ~ Albert Einstein 

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It’s like the worst throbbing toothache anyone can ever have along with an earache & sinus ache all rolled into one all over my face and head. Just throbbing for hours or days almost nonstop, around my temples, eyes, jaw, sinuses, ears, shoulders, neck…. I was going out of my head, not knowing how anyone can live that way.  It takes an emotional toll on me.

“Hope is the little voice you hear whisper ‘maybe’ when it seems the entire world is shouting ‘no’.”

I was pacing the floors. Running in and out of rooms, wanting to scream and scream into the night until my throat was raw but my mouth wouldn’t open because my jaw locked.   I was devastated, furious, nearly to the point of insanity.  

“I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.”
Dalai Lama 

I am not an angry person, never have been. I rarely get furious and when I do, it subsides very quickly and I don’t deny or repress it but I almost never act on it physically other than civilized verbal/writing outlets, just telling people about my anger. I don’t yell or curse people out or cry and hit things.   I don’t ever feel like doing that. Not because I think it’s wrong or because I’m too shy, timid, or meek.  It’s just not in me to be like that, to express anger that way.

“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”
Epicurus 

But when this flared up last week, I was furious. I wanted to yell, scream, break things.   I wanted to throw whatever inanimate objects I could get my hands on and watch it break into a million Little pieces.   The way my body felt.

“Hope is the dream of a waking man.” ~ Aristotle

I did not want to hurt any living creatures. But I sure wanted to destroy objects. But I couldn’t because it was too hard to move. I could hardly open my mouth. 

“Courage is like love; it must have hope for nourishment.”
Napoleon Bonaparte 

It took a lot to not crack my head against walls. 
 Not out of anger but out of near insanity because of the pain and just having absolutely no idea what to do. It was driving me mad. I stood at the wall struggling not to crack my head against it.

I kept telling myself that when the horror ends if it ever does, I won’t even feel relief or gratitude until later, the first thing I will do is throw things and break things (alone so no one else has to witness or suffer) to release the fury I couldn’t express while it was happening. I felt like I wanted revenge.  Revenge on the pain itself. It makes no sense because the pain is not a sentient thing with consciousness. But it’s what I felt.

I kept reading stories and facts and poetry about chronic facial and head pain disorders. And I just couldn’t fathom the pain we feel. The agony we’re forced to endure.   It brings me comfort to read about these disorders, to know they are acknowledged at least by some people and knowing someone somewhere understands.   I love how we can take the tragedy of pain and turn it to beauty with poetry, drawings, songs….And if I could, I would take on all the facial and head pain in the world so no one has to ever feel what I feel. I can’t even begin to imagine someone else having to endure this. It’s unimaginable. Devastating.

TMJD headaches, Migraine headaches, cluster headaches (also know as “suicide headaches” because they bring people to contemplate or attempt suicide), Trigeminal neuralgia (also known as “The Suicide Disease” because it drives many people to contemplate and even attempt suicide to stop the pain)….

“When you come close to sellin’ out,
Reconsider” ~ LeeAnn Womack

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It was so extremely difficult to focus on anything other than my pain.   It is torture. It’s hell. But I kept telling myself, life is still a gift. I will still go on. Hope kept me going.

HOPE.

I realized then even more, how important it is to develop a life philosophy.   A specific, firm outlook on life. So when things get difficult and devastating, we have our own life philosophy to fall back on. My life philosophy is all about love & compassion for others and myself and that life itself is a blessing no matter what and if I really try, I can find hope & strength deep inside to keep on going. I believe that no matter what terror and pain I encounter and endure, no matter how much pain I must experience, either physical or emotional, I will eventually conquer it and keep going and still be happy in general. And pain will strengthen me & teach me. Even when it currently does not seem that way.

“Take that first step even when you can’t see the whole staircase.”

There’s always, always, ALWAYS something to be thankful for, something to smile about, something to look forward to….things can be handled positively. Life itself is pure blessing. 

Life.

I don’t just tell myself this occasionally. I live it. Every single day.  I write about it, meditate upon it, find quotes, books, writings, people, blogs, videos…that support it, nurture it, confirm it.

“Some people see a hopeless end, others see an endless hope.” ~ Unknown

I keep up on it constantly. In good and bad, beautiful, ugly, painful, everything, it is my life.

It’s a conscious, intentional decision, habit I have formulated. It often comes naturally to me but sometimes I have to force it, remind myself to maintain it even when it’s so difficult. 

If I really try, I can summon those hopeful feelings.

I have little lapses now and then where I falter or fall and forget or ignore my life philosophy that I have established.   It goes right out the Window.   But it’s ingrained enough in me that I always come back to it. Find it once again. 

“I will keep a smile on my face and in my heart even when it hurts today.” — Og Mandino

I heard of this goal or project people do every year. They choose a word for the new year and make it a point to constantly live up to that word everyday for the whole year. I never felt compelled to partake in this activity because there are various words, not just one, that I intend to live up to.   Hope, gratitude, compassion, love, ALWAYS LOVE, kindness, honesty, inspiration, strength, positivity, HAPPY, optimistic, HELPFUL, the list goes on && on….Many of these individual words contain multiple other words… and I don’t want to only plan on living this word for one year but for always.   Forever & for always.

“And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” ~ Mariah Carey 

But if I were to choose a word for 2014, it would be HOPE. This is something I need. It’s something I have been feeling so much of lately.  And when I feel that my hope is gone, I remind myself that it’s just temporarily misplaced, not forever lost.

Hope keeps us going. Even a small slither, a tattered string, a frayed thread can be enough…..

“When things go wrong as they sometimes will,
When the road you are trudging seems all uphill;
When the funds are low, and the debts are high,
And you want to smile, but you have to sigh;
When care is pressing you down a bit –
Rest if you must, but don’t you quit.” 

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I find it usually more difficult to live in hope when I’m deeply depressed than when I’m in a lot of physical pain. Physical pain & illness often feels hopeless but it can also instill in someone, a strong, fierce will to survive, to do whatever it takes to live. Depression, true depression that isn’t just a low mood is often the opposite. It often saps the will to survive, the desire to do whatever it takes. So it’s extremely important to remember and keep reminding ourselves over and over that depression feels hopeless but it’s not. It creates lies and delusions that things are forever hopeless and can never get better and that life isn’t worth struggling for.

 “The bravest thing I ever did was continuing my life when I wanted to die.”

But even with the severe agony of depression, it’s possible to have some sort of glimmer of hope, enough to keep going.   We may have to work harder to tap into it, to believe it. But it’s possible!

“Embrace your challenges with an open heart because through every challenge, strength forms.” 

I even bought a notebook recently, on one of the days my pain disorder was at its worst.   On the front cover it says “Live in hope.” and I bought a candle holder that says “HOPE.”

I found both of these accidentally but at the perfect moments. A perfect coincidence.

“I hope to stand firm enough to not go backward, and yet not go forward fast enough to wreck the country’s cause.”
Abraham Lincoln

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Sometimes I can’t be happy and I can’t be completely positive or cheerful or pain-free but I can have hope. Hope for something specific or just a general state of feeling hopeful. 

“You are not the victim of your body. ” ~ Dr. Christiane Northrup

And even if the thing I hope for can’t or will not happen, I can have hope for something just as good or something even better. I am surrounded in hope. Filled with hope.

“In reality, hope is the worst of all evils, because it prolongs man’s torments.” ~ Friedrich Nietzsche

Even though it benefits us to have hope though, it’s detrimental, I believe, to put off current happiness & peace of mind hoping for something better or hoping for something impossible. Hopelessness isn’t always despair; sometimes hopelessness about something we know can’t happen or won’t happen, is just acceptance and liberation, then we can move forward hoping for better things.

Hope should be exhilarating and motivational and inspiring, not something to hinder us, keeping us in invisible shackles. So when we find what we have been hoping for just won’t happen, we can move forward to new hope. Live in hope.

“We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds.”
Aristotle Onassis

“A Picture of Pain”
by Bear Peterson

“I tried to paint a picture,
Of how I really feel.
But I could not find the colors,
To make it all seem real.
Not one color was hot enough,
To show the burning pain.
Not one color bright enough,
To make me wince again.
Not one was dark enough,
To show the isolation.
In the end saw one thin line,
Worn, frayed and almost broke,
To my mind that one thin line,
Is a single thread of hope.” 

(poem about migraine headaches)
– See more at: http://www.ahmablog.com/2013/05/ellen-draft-3.html#.UrsePZpOnHw

Much happiness, love, & comfort to you all. I hope you find healing if you need it. And if you are struggling with any kind of pain, temporary or chronic, physical or emotional, please know I am very understanding.   I can’t know, literally, how you feel, even if we have the same thing because we are two different beings, but I have some sort of deep understanding and much compassion.

“You can find love
If you search within yourself
And the emptiness you felt
Will disappear” ~ Mariah Carey
Xoxo Kim

P.s. When the worst of it finally ended, I felt relief & gratitude and did not throw things, scream, and break stuff. ;-D

“Be happy not because everything is perfect nor because everything goes your way. Be happy because everything sucks but you are doing just great. “

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“You could go the distance, you could run the mile, you could walk straight through Hell with a smile.” ~ The Script