show me how you do that trick
The scary part of all this is when the medication actually starts to work.
You’d think that would be a relief! But its not. When at the end of the day, the pills kick in and stillness finally creeps over my chest, its like a warm, calming blanket. It wraps around the rock of pain, tucking it away for the night. The static in my brain, at least for awhile, is reduced to just a basic white noise.
The static is referred to as the fibrofog. Its common enough. The pain and anxiety are the base of lupus. But those feelings are my feelings. That’s how I feel. They are mine. They belong to me and I’m tired of having MY emotions and MY thoughts blasted to hell by a handful of pills. But, if I don’t, that rock, deep inside, becomes a landslide and before I know it, I’m buried.
So do I dig my way out or take the easy way.
Last night, JM and I put ‘90’s dance jams on and sang and laughed and I danced. We made faces at each other. Played the stupidest songs we could think of. And lived. You’ll never, ever know how precious those moments are. The moments that we tuck away the stress and the worry and pretend we’ve never seen the inside of the doctors office. Or the inside of my body. Trust me - you don’t want to know what the inside looks like. You don’t want to know how fragile the tissues and cells are, how easily ripped apart they are. How quickly your own body can turn on you and cut every sense of normalcy away.
So every single morning I wake up slowly. And before I let myself hurt, I remember to breathe. Wake slowly, breathe deeply. Then turn to the one you love and tell them how much you love them. That way, you wake with a smile and with a light heart. Because that day can bring anything. Pain, hurt, stress. Anger. But if you wake, breathe and love, you’ve already beat it all.
That’s how I want to live. I feel bad now for holding grudges, for being needlessly angry. I cant bring myself to be upset at anyone lately. There’s no room for more negativity. I’ve been given the gift of time. I refuse to take that for granted. Wake, breathe, love. Laugh, so much laughing. So much loving. And its all good.
Really.
You’d think that would be a relief! But its not. When at the end of the day, the pills kick in and stillness finally creeps over my chest, its like a warm, calming blanket. It wraps around the rock of pain, tucking it away for the night. The static in my brain, at least for awhile, is reduced to just a basic white noise.
The static is referred to as the fibrofog. Its common enough. The pain and anxiety are the base of lupus. But those feelings are my feelings. That’s how I feel. They are mine. They belong to me and I’m tired of having MY emotions and MY thoughts blasted to hell by a handful of pills. But, if I don’t, that rock, deep inside, becomes a landslide and before I know it, I’m buried.
So do I dig my way out or take the easy way.
Last night, JM and I put ‘90’s dance jams on and sang and laughed and I danced. We made faces at each other. Played the stupidest songs we could think of. And lived. You’ll never, ever know how precious those moments are. The moments that we tuck away the stress and the worry and pretend we’ve never seen the inside of the doctors office. Or the inside of my body. Trust me - you don’t want to know what the inside looks like. You don’t want to know how fragile the tissues and cells are, how easily ripped apart they are. How quickly your own body can turn on you and cut every sense of normalcy away.
So every single morning I wake up slowly. And before I let myself hurt, I remember to breathe. Wake slowly, breathe deeply. Then turn to the one you love and tell them how much you love them. That way, you wake with a smile and with a light heart. Because that day can bring anything. Pain, hurt, stress. Anger. But if you wake, breathe and love, you’ve already beat it all.
That’s how I want to live. I feel bad now for holding grudges, for being needlessly angry. I cant bring myself to be upset at anyone lately. There’s no room for more negativity. I’ve been given the gift of time. I refuse to take that for granted. Wake, breathe, love. Laugh, so much laughing. So much loving. And its all good.
Really.
11:23
i never said thank you.
i always wondered what it would feel like to drown.
i promise you, you take your body and your health for granted. its so easy to live when you're not being eaten alive by your own immune system.
but guess what.
to suffocate under the weight of something as beautiful as water.
this year, i drowned. i went under, beneath myself in my own life.
i held my breath and stared up at the light above me and waited for someone to reach down and save me.
so many people tried, reaching and grasping, to pull me out of the water
but i didn't start living again until i accepted that i was dying.
i tried kicking and screaming. crying. begging to reach the surface and save myself.
but it wasn't the panic or the struggle. it was the calm that saved me.
in control whether i'm drowning in my life or choking on my own imminent death
i promise you, you take your body and your health for granted. its so easy to live when you're not being eaten alive by your own immune system.
but guess what.
its still my body, my life, my soul. i'll never give up.
17:27
friends beat bears
I must admit - being a zombie had its benefits. One of them NOT being that I even terrified all the drunk pseudo-grown ups at our own party.
It was fun. But by midnight i was clawing my own face off. Literally. The latex skin was unceremoniously ripped off my face and the half liter of blood we used on my face was scrubbed off. Painfully.
It was so much fun. One of those nights that just goes perfectly. Perfect costumes, absolutely perfect crowd, perfect decorations. So fun.
The day after however.
I literally did not move from bed. I think i got up to eat at like... 6 in the evening. But other then that - there was no moving.
Zero.
Zilch.
Absolute stillness.
I find that there is such an emphasis put on having the best time ever with the coolest people ever and getting tons of pics to prove it. Its so strange but its hard not to feel that way. Everyone just wants to have a good time. Its so hard not to feel let down when things don't go exactly as planned.
Lately I've been making the effort to avoid expectations of other people. Its only fair - if I want to be free of other peoples expectations for me, I have to give that same courtesy to other people. In the same way, I give my time and energy, emotions, only to the people that are going to return my investment.
At this point, I've come to the acceptance that as an adult, I don't have to please everyone or do favors for every person that asks. I dont have to be friends with every person I meet. As an adult, I have the pleasure of choosing friends on the basis of mutual interests and emotional connection.
I take a lot of joy in that.
It was fun. But by midnight i was clawing my own face off. Literally. The latex skin was unceremoniously ripped off my face and the half liter of blood we used on my face was scrubbed off. Painfully.
It was so much fun. One of those nights that just goes perfectly. Perfect costumes, absolutely perfect crowd, perfect decorations. So fun.
The day after however.
I literally did not move from bed. I think i got up to eat at like... 6 in the evening. But other then that - there was no moving.
Zero.
Zilch.
Absolute stillness.
I find that there is such an emphasis put on having the best time ever with the coolest people ever and getting tons of pics to prove it. Its so strange but its hard not to feel that way. Everyone just wants to have a good time. Its so hard not to feel let down when things don't go exactly as planned.
Lately I've been making the effort to avoid expectations of other people. Its only fair - if I want to be free of other peoples expectations for me, I have to give that same courtesy to other people. In the same way, I give my time and energy, emotions, only to the people that are going to return my investment.
At this point, I've come to the acceptance that as an adult, I don't have to please everyone or do favors for every person that asks. I dont have to be friends with every person I meet. As an adult, I have the pleasure of choosing friends on the basis of mutual interests and emotional connection.
I take a lot of joy in that.
15:21
living dead street cred.
zombie mouth is not conducive to eating. or drinking. or speaking.
zombie mouth exists solely to look gross. as I`m swiftly coming to learn. I`m dressed as a zombie for a party tonight. Obvs. I didn`t choose it as some great comparison against consumerism. I don`t have an inner motive or great plan.
I`m dressed as a zombie because I work in a salon, with a makeup artist and it was the funnest makeup application we could think of.
I scared a child, was accused of glorifying battered women and someone thought that I was actually hurt and tried to help me.
I dont know what to say to any of that.
zombie mouth exists solely to look gross. as I`m swiftly coming to learn. I`m dressed as a zombie for a party tonight. Obvs. I didn`t choose it as some great comparison against consumerism. I don`t have an inner motive or great plan.
I`m dressed as a zombie because I work in a salon, with a makeup artist and it was the funnest makeup application we could think of.
I scared a child, was accused of glorifying battered women and someone thought that I was actually hurt and tried to help me.
I dont know what to say to any of that.
13:33
do what you wanna do.
Lately I've had the pleasure of doing things for myself, by myself.
Always it seems like people push you towards outcomes that they want. Maybe its subtle pushing but I find that people always try and direct the situations into an outcome that pleases them or that maybe they think would be best for you.
I like to please people. I always have. I really enjoy seeing people get what makes them happy. But I'm coming to the realization that I cant.
I cant do that anymore.
Now its time for me. I get to choose what I do, when I do it. And so far, so good.
I've had the opportunity to do several AMAZING photo shoots lately, the most prominent being one with Gordon Ross. And what I've learned is that I love to do them! I love to be in the salon, I love saying no when people ask for favors. I love slicking back my mohawk into a crazy androgynous look that pleases me and I could give a shit less about what anyone else thinks.
This kind of personal revolution is intoxicating. I have to be careful that I don't get flippant.
Personal clarity, empathy, confidence, humor and humility.That's how I'm going to be living my life. How are you living your life?
Always it seems like people push you towards outcomes that they want. Maybe its subtle pushing but I find that people always try and direct the situations into an outcome that pleases them or that maybe they think would be best for you.
I like to please people. I always have. I really enjoy seeing people get what makes them happy. But I'm coming to the realization that I cant.
I cant do that anymore.
Now its time for me. I get to choose what I do, when I do it. And so far, so good.
I've had the opportunity to do several AMAZING photo shoots lately, the most prominent being one with Gordon Ross. And what I've learned is that I love to do them! I love to be in the salon, I love saying no when people ask for favors. I love slicking back my mohawk into a crazy androgynous look that pleases me and I could give a shit less about what anyone else thinks.
This kind of personal revolution is intoxicating. I have to be careful that I don't get flippant.
Personal clarity, empathy, confidence, humor and humility.That's how I'm going to be living my life. How are you living your life?
12:56
I done did my first haircut last night.
No matter that it was on a fake head. Or that I go so nervous with Mike and Ida watching that I nearly vomited. It was a really close call.
It didn't ease my fears. It amplified my hair fears by an obscene amount. Everyone keeps telling me not to worry, that I'll go home crying at least once. That I'll ruin someones hair and the world will go on. That its okay to make mistakes, I just need to keep practicing.
I cant pretend to be okay with all that!! I spent 20 minutes perfecting a single section of hair so that it was exactly flush with the original guideline.
On a doll head.
I spent an hour and a half perfecting a straight line on a dolls head.
I made myself sick over a dolls head.
I'm not sure if this is going to make me a good hairdresser or an obsessive, nervous wreck that curls up in ball and cries at the sight of scissors.
p.s. the bangs were already there. it wasn't me, i swear.
11:14
I woke up laughing from a dream last night.
Not just kind of giggling. I was laughing, loudly. And when JM asked me what was going on, I sort of scoffed at him. Who doesn't wake up laughing in the middle of the night. I think my exact words were "Uhh, it was a funny dream babe"
And fell back asleep.
I'm naturally curious so I looked up what that means in a dream dictionary. And supposedly I am full of joy or I'm afraid of ridicule.
Or my friends and I do such funny shit that I dream about it and cant contain my laughter to the subconscious world.
Its all vaguely reminiscent of the time I rolled over, punched JM in the face, stared him in the eye for a few seconds and then went back to sleep. These things just happen to me. I have a history of sleep talking but its never veered into sleep violence or sleep comedy. It makes me wonder what else I do in my sleep. I'd be interested in undergoing a sleep study of some sort. I wonder what they would find. I would either do really interesting things or I would be incredibly boring aside from a few bright points.
I think.
Poor JM is going to be living in sleep fear now.
Not just kind of giggling. I was laughing, loudly. And when JM asked me what was going on, I sort of scoffed at him. Who doesn't wake up laughing in the middle of the night. I think my exact words were "Uhh, it was a funny dream babe"
And fell back asleep.
I'm naturally curious so I looked up what that means in a dream dictionary. And supposedly I am full of joy or I'm afraid of ridicule.
Or my friends and I do such funny shit that I dream about it and cant contain my laughter to the subconscious world.
Its all vaguely reminiscent of the time I rolled over, punched JM in the face, stared him in the eye for a few seconds and then went back to sleep. These things just happen to me. I have a history of sleep talking but its never veered into sleep violence or sleep comedy. It makes me wonder what else I do in my sleep. I'd be interested in undergoing a sleep study of some sort. I wonder what they would find. I would either do really interesting things or I would be incredibly boring aside from a few bright points.
I think.
Poor JM is going to be living in sleep fear now.
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