Raising hell to escape from it

Today is the day I show them what’s been hidden behind the curtains.
In a few hours I make my way out the door to the hospital, for the monthly-ish appointment with my Doctor of nearly eleven years. He’s seen and been there for me for everything I’ve gone through, always by my side, always caring, always treating me as more than just a patient. John seems to see me as I see him, as a friend, and though it’s unlikely he shares the same sentiment towards me, I hold him as one of my best. He knows more about me in some ways than anyone else ever will, and he’s seen me at my physical worst.

But he hasn’t seen what I’ve been hiding. For the most part, I’ve kept that from him – from everybody – and have always played the role of the cheerful patient, regardless of how I physically felt. But this reaches far beyond physical. Sure, the hernias I have are somewhat painful, but more of a discomfort than an actual pain for the most part as I feel my intestines slide back through the muscle wall and find their little pocket of flesh when I stand and let gravity have its unforgiving way, stretching it like a growing foetus.

For five years, since my umbilical hernia started stretching my belly and giving me an outie that looked like I swallowed a cucumber whole and now it was sitting in my stomach, one end pressing up against my spine and the other trying to force its way out of my navel, I’ve been trying to get the operation that tucked everything back inside. Call it vanity, call it whatever the fuck you want, but I hated it then, back when it was a junior deformity, and it’s only grown; grown to the point of completely fucking my quality of life.

And unless this surgery is done, it will be there for the rest of my life, continuing to grow and get more disgusting as the months progress – along with my new hernia, an “inguinal” hernia, which sits, growing rapidly, jut to the top right of my groin. It’s nearly as if I have three ball-sacks now – one coming out of my abdomen, one on top of my c&b, and the original. From the discomfort to the monstrously hideous appearance that prevents me from doing nearly anything involving core muscles to simply taking my shirt off in front of *anyone*, I’m ridiculously limited in the things I used to love doing. STILL love doing, but can’t or won’t.

I’ve been nice up until now. I’ve talked rationally, pleaded, begged – I’ve written emails not only to my doctor* but to the surgeon who won’t do the operation based on a few minutes of poking & prodding and through that deciding that it was too risky, and I’m fucking tired of being nice, of being understanding.

Today I go see my doctor, and today, I’m not hiding my anger, pain, anguish or sorrow. I’m going to be someone he’s never seen before, and though performing the surgery is not his decision, it just might give him the balls to relay the importance of it to the person who is.

I’m fucking done being the good patient. The understanding one. The rational one.
I don’t give a fuck anymore, and it’s time to raise some hell.

*
Dear John,
Thank you for your call on Monday.

I appreciate you putting in the order for the hernia support belt, but to be truly honest with you (as I’ve always tried to be) – if the only way I’ll get the surgery I need is to have my intestines twist, then that’s what I’m going to try to somehow make happen.
For over four years (since Kat & I stopped seeing each other, back when the hernia was about 1/5 what it is now) I have pushed any possible romantic involvement away, not daring to even innocently flirt, terrified of even the possibility of anyone seeing the hernia, even more than I was afraid of telling people I was HIV+.
I haven’t even kissed anyone in over three years.

I used to have the morphine to numb the oppressive loneliness that the hernia has created in my life, and now, I don’t even have that. Living a life without even the hope of finding someone to share it with is getting to be too much to bear. I try, but at times I feel incredibly weak.

I’ve turned down offers to go swimming with friends, to go for camping trips at rivers or lakes, and anywhere or anything where I might need to take my shirt & hernia truss off. Even I try not to look at it in the mirror.

Though I understand the concerns about the ascites, I am able to keep it at a bare minimum hardly even trying to. On the day my inguinal hernia ripped through the muscle, I can *almost* guarantee that it had nothing to do with ascites – when I first felt the sharp pain, I was just playing with Ruby a little too enthusiastically. Due to the umbilical hernia combined with the months upon months I was mostly confined to a hospital bed, my core muscles have weakened to the point where they don’t have the strength to keep things where they belong anymore. I live in this body every day & pay close attention to it, and strongly feel that the weakness of the muscles have an incredibly large part in it all. I know that I can keep any fluid buildup down to the barest minimum before & after surgery if I’m allowed it. It’s barely an issue even without taking the herbs or meds for it these days – and if I have the surgery I’ll do everything it takes to heal without any complications at all.
I just want to feel like I’m alive again…

John, I’m sure you’re aware that it’s more than the lack of romance that is causing the emotional pain. The life I worked so incredibly hard to create -performing, costumes, and simply the joy for life that people once said inspired them – that’s gone, and it’s almost entirely due to the hernia & it’s physical & psychological effect on me.

When I was in hospice & the hospital after that I have NO doubt that it was my will to live that kept me alive and instilled in me the drive to learn to walk again. The spirit I once had to remain alive is dwindling.

Though it seems like Dr. Makersie is kind & thoughtful, there is one thing that he doesn’t seem to understand. Though the “statistics” say there could be a 30% chance of complications with the surgery… as my will to live fades, the chance of me dying without the surgery increases every day.

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Still somewhere inside.

I constructed a monotone voice, did my best to empty my heart. As I waited, I practiced. Tried to center. This time he wouldn’t get me. I wouldn’t let myself go. This time I wouldn’t.
I thought I was prepared. Hell, shutting off was the first thing I had ever learned. I was a quiet baby, they were worried I was “slow” because I didn’t cry. I know this game, written into my heart when they took me from her arms after only 15 minutes with my Mother… but that’s not what this is about.

A serious, somewhat grim look on his face as he comes in. I’m somewhat surprised he doesn’t even acknowledge being three hours late, but easily let it go. Running through my head is that this is the single person that can change my life and for now every thought swims around what I can do to convince him to do this surgery, to make me whole again, to stop the pain both outside and in my heart.

On the table he looks at it again, prying, playing, doing what I do al the time – tucking my intestines back inside of me and wishing they stayed there. It doesn’t work, I know without even looking.

Sitting back up we start talking, a subtle but sincere look of concern on his face as he again explains all that could go wrong and why. I notice that this time there are more reasons. Maybe he prepared.

“Surgeons try not to be executioners.”

“But I’m already dead. This is the one thing that could give me my life back.”

At least, that’s what I tried to say. In the first few words out of my mouth I felt my heart claw its way into my throat, blocking all coherent speech. Everything I wanted to say. I pause for a few seconds, try to talk again. Try to say what I’m feeling. I am frustrated, dismayed that I can’t control myself. Surprised that I hid this pain so fucking well that even I didn’t realize how deep it went, how much stronger than me it is.

I kept trying to talk, to say something that didn’t make me sound completely irrational & controlled by emotion. I kept failing.

But something must have worked. He told me that he would check with a colleague of his at UCSF, a hospital that is one of the best transplant hospitals in the country & much better equipped to perform the surgery. See what he says.

“I’m not saying no.”

Twice he said this, but all I could hear was how far away it was from “yes”.

 

As much as I had hoped to be able to talk, to argue my point rationally, and as much as I had gone over every point in my mind that I needed to bring up to him, I knew even if everything went perfectly he would still see me more as a series of tests and paperwork than as someone who depends on this surgery to get his life back. It’s through no fault of his. We have only met briefly three times, and his job is to judge by the evidence, not emotion.

Knowing this, I woke early yesterday to try to write something that might make him understand the person behind all the tests that scream to his rational mind that I have less than a 1 in 4 chance of living through this – that I am far more than a statistic.

This, along with some words from friends that follow, is what I wrote:

Dear Dr. Mackersie,
Since even before I made another appointment with you last month, I’ve been trying to figure out what to say when we met again. Though I’ve thought of many things, I still have no idea what will actually come out of my mouth. I’ve never felt talking has been one of my strengths – but writing has, so today I give you this in addition to all the emotional blather that I’ll try to say.

When I was only 17 years old, I received a call telling me that I was HIV+. As I’m sure you remember this was at a time when nearly all people who contracted the virus were dead within an average of 18 months.

From that moment on, I lived my life expecting to get sick and die at any time, knowing that it was more than likely that I would. I figured that I would enjoy life while I could, and any future I thought of having – any goals, dreams, school, or anything that would take longer than a year was out of the question. I erased any hope of one day becoming something more, having no choice that I saw but to find a thin contentment in floating from job to job, only working to be able to eat & enjoy whatever time I had left. I eventually made my peace with dying very young.

After over a decade had passed without any health issues, I realized something was wrong – but it seemed too late to do anything about it. It’s difficult to simply change the thinking that you will die any day into understanding the possibility that you might live.

Fast forward to 2004. I was laid off from a job, and at that point decided to find out what would happen if I actually lived a life that I wanted – a life that might mean something, a life that for the first time might have value – not only to me, but perhaps others as well.

It wasn’t easy by any stretch of the imagination, but I refused to give up – and eventually found myself not only loving the life I had fought so hard to create, but for the first time ever, truly loving myself.

Had I not experienced that incredible life, I have little doubt that I would have given up like so many other people in the hospice. There were two primary things that kept me fighting so hard: finding my Birth Mother who I had been searching for most of my adult life, and returning to become the person I loved again – performing, sharing myself, inspiring & making others happy. There is no greater gift I had ever been able to give, and it is, literally, what I lived for.

The way you are able to improve people’s lives with your hands & knowledge, that’s what I did with my dreams, creativity, & body.
Now imagine if (gods forbid) there was an accident, and your hands were hurt. There was an experimental operation that you could have performed, but it was risky – it would either restore them so they were of use again & you could continue helping & saving others, or they would be completely dead & useless at the end of your arms.
What would you choose to do?

Many years ago I made complete peace inside my heart with death, and that holds strong to this day. That, however, was a physical death. I didn’t count on a situation that would eventually blacken my spirit & heart, and over the past few years, gradually but steadily, that is what has been happening to me. The immense & beautiful love for life that I had is slowly being extinguished, as I can’t live the life I fell in love with anymore – or be that person.

A couple days ago I asked if there was anyone willing to write a few words to you so you might see how important this is to me in case I didn’t get it right. A couple of old friends wrote the words below.

I need to get my ass in gear now if I want to make it to our appointment on time, so I can’t read over what I’ve written – but please take it for what it’s worth, and I trust that you will hopefully understand how much this means to me – and the power you have to change my life entirely.

Thank you for reading.
With respect, hope, and a bit of groveling,
~ Casey Porter

~ ~ ~

Hello…
My name is Carolyn Jepsen and I am here to write about Casey Porter.  I know that you and he are meeting soon to discuss surgery and I would like to say a few words on Casey’s behalf.

Truthfully, I am not quite sure where to begin this note.  I cannot imagine the decision that sits with each one of you and do not envy either position.  I can only tell you what I know, which is that I trust Casey.  I trust his instinct, I trust his strength and his will.  I trust his creativity and his unbelievable capacity to fight.  Casey is someone who knows better than to live as fully and beautifully as possible.

I met him back in 2004, oh-so-briefly, as he spearheaded the performance end of a Dresden Dolls DVD shoot.  He was vibrant and full – I had never met such a force in my entire life.  A professional artist wrangler, stilt walker, fire-breather…simply put, an outrageous tornado of art and joy.  His example stayed with me and remains to this day.

In the last few months, I have read and listened to Casey’s words as he has detailed a sort of spiritual and creative death.  For an energy such as his, there could be nothing worse.

As I’m sure you already know, the miracle of Casey is that he lived through death.  He walked out of that hospice on his own two feet, then went out into the world to keep right on living vibrantly, passionately and fully.  He healed himself as he lives – on his own terms.

I don’t know the odds that this surgery holds, but like I said earlier, I do know that I trust Casey.   I believe him when he says that he understands the potential consequences.  I believe him when he says that, for him, this is more than worth the risk.  He sees this surgery as his best shot at reconnecting to his heart and spirit – to the self that he fought so hard to fall in love with.  I believe he has earned that shot and as you consider whether or not to give it to him, I hope that you will consider this: Casey Porter knows what to do with a chance at a greater life.  He won’t waste it.

Thank you.

~ ~ ~

Dear (Dr, Mackersie),

I understand your hesitation with my brother’s surgery and the complications that may arise. I work as a surgical tech for LAC+USC trauma and I know the risks. But this beautiful man has been on deaths door and spit in its face. He has the miraculous spirit that will not give up, and that is why it’s been so painful for me to read his posts over the past year, watching his spirit fade. Casey is strong and tenacious, and I know you can work miracles to vastly improve his quality of life.
Please. I believe in him, and you.

Warmly,
Cat Colegrove

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

In writing this, I’ve come to an understanding. A remembering, so to speak.
Since I started walking this life of dreams, I have never let anything get in my way. I never let anything stop me.

Though the circumstances are different, I need to remember that through it all, and as well as I may hide it – I’m still that person who will never quit.

 

All I have to give.

The minutes tick away and I lay here tossing, turning, finding comfort in body yet far from it in mind. This is no easy task I’ve taken on, and each moment I relive hammers that into my heart, my being.

I don’t do anything half-assed. I now wish that I could but that isn’t me. Honesty is a crippling and exquisite trait, but sometimes, MOST times it;s all I feel I have left. I can’t let you down in the maelstrom of what this beautiful life was, but now I know – it will be more than just one book. This life is more than anything I could ever have dreamed of.This life  of dreams, nightmares, and this life I have created out of nothing.

There is one person that doesn’t get mentioned much, but follows in my heart from a time when I needed her more than anything else from the Forest until a time, THE time when I can escape all of this in the future. Her name is Tea. She has a child with my name. I don’t know why I write this – I just need to, just in case. I need you to take care of her and her family as I always have wanted to but haven’t been able to – yet. Promise me this. Please.

I think I figured out how to make my story readable. I can’t make The Brigade smaller, can not make my time in The Enchanted Forest anything less than it was – but as I write and cross out the things that have made this life so exquisite, I realize that the most important things are the beginning and the end – and I think this end os the finding of my Mother, then Father.

~ ~ ~ ~ ~

I can physically measure the dissatisfaction around me. The need to be someone, somewhere else. the need to be no one with nothing but a shitty van and a road and life in front of me or a motorhome that held in it promise to one day be able to go anywhere – all I needed was money for fuel. I thinkg everything changed when I found myself dying and had to sell it to afford to survive.
I look around me, see a cheap electric guitar, a keyboard,  things that I pray to no god I believe in that I may create something on, someday. I’ve always wanted to lose myself in music, to create something I can feel and share, but even through it all I still don’t know better – my escape is in words and the road.

I should sell everything I have and buy a car, onee of those things like a RAV-4 that will allow me plenty of room to just fucking GO with Ruby, me, her food and a couple of bags of mine. And my laptop. Find a place in a forest by a lake where we can be alone, where I can be alone, and… and then I may be happy.

~ ~ ~ ~ ~

I set up another appointment with the surgeon who denied cutting away my umbilical hernia yesterday. Before, four months ago, I told him that it was taking the life I loved away, taking me away. To his credit, he didn’t say no – what I heard was that he was terrified, that I have less than a 1 in 4 chance of living due to possible infection, and at the time I realized that as much as was willing to try that, if I did die it was more than only me that would be affected. He’s a good person – this I felt from the moment I met him… but he also hasn’t any idea who *I* am.

He doesn’t know that I shold have been dead long ago but fought with all I had to survive, far beyond what Western Medicine could do for me. He doesn’t know that when I die, it will be y choice. He doesn’t know that each day I live with this – the pain, the way it takes me furthier and further away from who I was and who I AM that I lose my heart, my passion, my reason.
In mid-December, I will go to him yet again, and tell him that the only way I can die through this challenge is if *I* want to – and I don’t yet. My book will not be done then. I need to somehow make someone who doesn’t know me understand that he is released from all responsibility – that my life is in MY hands, not his.
But will that make me happy? If he agrees to the surgery, if I let him cut me open in the single place taht I loathed anyone touching and he fixes it to the best of his ability will taht solve anything?
I think it may be a start – a beginning of somethingthat will let me come back to me again. I will never forget what I went through – but at the very least I won;t have to live with the memory of it every single fucking day anymore. At the very least, I can move forward instead of being stuck here. I need to convince him. Maybe I should make a video of the highlights shere John & Val said I wasn’t a typical person, Maybe I should invite him to tald to any and all of the nurses that called me a miracle when I didn’t die.

I am not a miracle. I just didn’t want to die yet. I had things to do. I still do.

~ ~ ~ ~ ~

As I create my book, I go through every post I have written over the years, trying to figure out what stays in and what goes. It’s the most difficult thing I have EVER done… but it must be done. I’m closer now than I ever have been but it still will take time. Time and money for a content editor, a professional, hardcore someone who has only the need to let this book be good. For some reason I can’t explain, I feel that it will be only a woman who I trust to do that.  Just waht I’ve always imagined.

As I create my book, I find passages that I will soon begin sharing with others = small gifts for The Brigade and all that have been with me through the years. Small gifts for those who have only just met me.
Though they will be gifts of nostalgia for some, new undertsanding for others, there is an ulterior motive – in order for this pook to help anyone, it needs to be read – and I’m hoping to create a bit of interest in what is coming. THis monstrosity that I will give the world. I want to create hype.
And I’m hoping that anyone who enjoys my words will telll their friends, tell people to follow, tell others that there jsut may be something here.
All I can do is write the words… It’s the only thing that has ever brought me peace.

Within two days, I’ll give my first small gift of what’s to come.

powerless & hoping

It’s early, though not as early as I prefer to wake up these days. The sleeping dreams were just too interesting, so I added an hour to playing inside my subconscious. After all, with our unconscious mind controlling 95% of our bodies – I want to make sure it has fun when I can.

There’s little worse than an unhappy subconscious; I’ve seen it in far too many people. I set the alarm on my phone an extra hour ahead.

Stumble to the kitchen, make my single cup of coffee, eat a small bowl of cereal then take me & my coffee back to bed. On the way I grab a few small treats for Ruby & give them too her. I’d imagine that she gets that morning stickypaste mouth just like humans do – or at least her breath smells like it.

I light a cigarette, take my first gulp/sip of coffee, and attempt to adjust my laptop table-thing so it isn’t resting on or pressed up against my hernia. Using my guts as a support just feels wrong in many ways – only one of them being the physical discomfort.
Looking at the clock a lot this morning – something I don’t like to do normally, but need to today. I have my second consultation for the hernia surgery in a couple of hours, & need to make certain I’m not late.
Walk Rubes, pack my notebooks & laptop in my bag & walk through the human detritus down to the bus stop on Market, armed with a mouthfull of “Fuck OFF’s” for the crack dealers who can’t seem to realize that I’m just someone going somewhere who doesn’t want to be bothered. Each time I consider tying or taping a sign to myself saying “NO, I do NOT want your fucking drugs, and if I DID wan’t drugs, I sure as hell wouldn’t get them from YOU” – but I’m thinking that would be too much – as they would probably only see it if I cut eyeholes in it & taped it to my face, and then I would have to wear it ALL the time, as they would never recognize me without the sign.
But I digress. (Maybe I think about this too much?)

The first meeting with the surgeon, three weeks ago, was filled with him telling me how insanely risky performing this surgery on me would be – IF he agreed to do it. I could die in so many ways it would make a hit-man for the CIA jealous, just for the creativity of it.

The surgeon was kind enough to describe some of them in enough detail for me to understand… but honestly, this falls solidly under “I would rather die trying than not try at all.” – and I despise the fact that it’s not my choice. Though if things go wrong I don’t want him to have to carry the weight of it, I still should be able to sign some sort of Kevorkian waiver saying that it’s entirely my choice & my responsibility if I die.

I think I may have a very, very small glimpse of what women must go through with people trying to control what they do with *their* bodies.

9:15am. Need to leave in an hour.

At the first consultation the surgeon kept saying that he’s not saying he *won’t* perform the surgery, which gave me a glimpse of hope. Thinking that that was the only time I would see him, I gathered up all the courage I had & told him how much it prevented me from living my life – from being *me*. I did my best to explain to him that it’s far from only an inconvenience or 20,000 negative vanity points – that it truly made me feel much less than the me I built. I couldn’t perform, couldn’t help build things, couldn’t this & couldn’t that – and all of those things were who I *was*… and as I was talking to him, I guess all of the repressed crap I’ve held inside came out, and I broke down crying, my words coming out in-between sobs, this 48 year old man blubbering like he was a boy continuously beaten up by the school-yard bully but helpless to do anything about it. That was SO not in the script.

As good as it felt, it was embarrassing, and seeing him on my way out of the ward I apologized for losing it. “That’s okay, it told me a lot.” …and then he proceeded to make another appointment for me a few weeks from then, surprising me – and giving me… hope.

It all comes down to today, I think. I’ve worked hard as hell, taking a ridiculous amount of herbs to ensure that I have as little fluid as possible in my abdomen, sacrificing food for herbs for this exact reason when I needed to choose between the two. I’ll still need to maintain, hitting them hard before & after the surgery – IF it happens… btu I’ve done all I can up to this point. Worrying about it would be a waste of imagination… I just need to get there on time, so I’ll end this now with a simple request – send some good energy my way, if you will. I don’t believe in “luck”, but some positive “Stick kSea’s insides back IN” energy would be well appreciated.

And of course – and always – any help you can offer for the herbs I need to keep up, as I’m completely screwed for herbs & money right now & could really use a LOT of help.
Paypal ksea@culturefluxmagazine.com ~ ~ ~ Thank you!

I’ll let you know how it went when I can – but gotta fucking BOLT right now…

Love you!

Enough is Enough/The Scourge

(PLEASE take a minute & read to the end to realize how far we’ve come. Thank you! ~ C)

I would much rather be talking about something like my book sales (soon!), amount of people the book has helped, or Bernie’s lead in the polls when I say “It just keeps getting bigger!” – and I have little doubt that soon I will be able to say it about those things, but unfortunately in this case, I’m not. I’m talking about something so revolting, so unnecessary, and something that could either continue to be the scourge of my existence, haunting my every moment with it’s curse & making every possible romantic interest run away screaming in revulsion – or simply be fixed in a couple hours, letting me live the life I (we) have fought so hard for over the past years.

Yeah, I’m talking about my godsdamned umbilical hernia. It grows. It laughs at me. Even the old beat up truss I use can’t contain it anymore. (It keeps slipping down.)

20160322_113013[1]

It now has a new addition – a permanent “band aid”. Due to the constant chafing on my shirt, regardless of how tight I make the truss each morning, I have an open wound the size of a dime that simply refuses to heal… but there MAY be good news, just around the corner.

In 6 days, I FINALLY go in for a surgery consultation, and this is the point where they decide if they will perform the surgery necessary to make everything right again.

It’s absurd how (I’ve let) something as dumb as this has taken so much control over my enjoyment of life.

There are a few reasons that they wouldn’t agree to perform the surgery as far as I know, which are too much fluid in my abdomen, platelets so low that they would be afraid that I’ll never stop bleeding until the pump shuts down, or they’re curious to see what it looks like when a person’s guts come popping out of his belly like one of those “party popper” things with the streamers that we shoot in people’s hair.
I’m pretty sure we can cancel out the later though, as hell – this is SFGH, and I’m SURE they’ve seen their fair share of guts not neatly tucked into the body where they belong.

In order to have the best chance of not having either of the other two make them deny my surgery however (brief pause for AWWWwww! Ruby’s having a tail-wagging dream right now!)

Anyway, as I was saying, in order to have the best chance of getting my intestines back where they belong so I don’t have to deal with the daily physical pain & all the other stuff – I need your help. Again.

I’ve been taking over twice the dose of the herbs that will help (due to my poorly functioning liver & mal-absorption of everything, it’s necessary) and ran out, just a couple days ago. Already, the fluid is building up, my abdomen & legs are beginning to swell, and the pain and pressure builds.

As I’m sure you can imagine, even if you’re on of the few who haven’t been there, it’s horribly demeaning to still have to ask for help. Through most of my life, as broke as I’ve been, I’ve almost always – ALWAYS found a way to make it work out, save for a few past emergencies. Even though each time I feel like I take every bit of my dignity & throw it out the window – I have no choice other than to plead for you to help me in this fight again.

My paypal addy is ksea@culturefluxmagazine.com

The good news is that we ARE winning! There are quite a number of herbs that I’ve been able to cut down on or quit altogether, and the physical difference in me from just a couple of months ago is incredible. I have more energy, can put my shoes & socks on without needing to contort myself in strange ways just to reach my feet, and no more pools of blood or fluid from scratching off the tiniest scab. You ARE making a HUGE difference in my life, and for that, I will be eternally grateful.

So please, if you can, I need your financial support to get rid of this damned hernia! We’re getting so incredibly close to what you’ve all been helping me reach for – let’s keep on making this dream come true – and THANK YOU!

That address once again – ksea@culturefluxmagazine.com

Love love love,

~ Casey

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The good with The bad

So, do you want the good news or bad news first?

Oh man – I was hoping you would say that. Okay! Good news it is. Here we go.

Remember that book I was telling you about, the one that I was planning to write? Well – I finally started it! It took some cunning, telling myself I was going to sit down & write something else, but at the last second I told myself I was going to at least start the book – and that’s what happened.

It won’t be like anything you’ve read before. Unapologetic, authentic, moving & inspiring, it’s going to finally put into words the wild & often hilarious adventures I’ve had over the past ten years, from when I decided to give up everything & chase down my dreams… and it’s going to be entirely true. Wish me luck.
Now, the crappy news I just received this past Friday from my doctor.
It’s likely I’ll get denied the surgery I’ve needed & been hoping for for over five years.
Quick back-story: When my ascites (the abdominal swelling) was at its worst, the pressure was so severe that it actually pushed my insides outside. Squeezed a part of my small intestine out of my navel.
Over time, it’s grown. The skin has stretched, and even more of my intestine is on the wrong side of me. As a result I need to wear a hernia truss every single day, from the moment I wake up until I go to bed. If I don’t, the intestine stays out and even after putting the truss on, the pain lasts the rest of the day.
Now that I’ve fought so hard, and, with your help, been able to bring the swelling back down – my doctor told me on Friday that my platelets were so dangerously low that the surgeons told him they would likely deny me the surgery I need to fix it.
Thismeans never going anywhere, ever, without having to wear the truss. Beach, sunny park, anywhere I want to soak in the sun or just fucking be comfortable again.

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These pictures disgust me. As superficial as it is, I’m insanely (irrationally?) self-conscious about the way my hernia looks.
To think that I may have to live even longer with it is unbearable.

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Even a simple small cough causes pain – with or without the truss. It feels like my guts are going to rip through the thin skin & go shooting across the room like one of those trick peanut jars… so I need to raise my platelets, or this is going to be my life. There are a few things that help, the best being papaya juice and wheatgrass/chlorella – but as usual, I don’t even have money for healthy friggin’ food, much less indulging in things like taking my health back & being able to live a life that I used to take for granted – and so many still do.
So again, as degrading as it is, I have to ask for help. Right now I can’t even get to the pharmacy to pick up a needed prescription, because I don’t have the $2.25 for the damn bus. I don’t have money for food, for the coconut water that keeps away the bone-crushing cramps and keeps me hydrated as the other fluid is flushed out…

***So please – share this & give whatever you can. I’ll admit – though I’m grateful for anything, it’s horribly disheartening when I lay it all out there, force myself to ask again, and help just barely trickles in – like it has the past couple of times I’ve had to ask. Please. Help me get what I need so I can not only get healthier, but get the surgery I need for my hernia while I can. I have an appointment with the surgeons on January 14th. There is no time to waste.

My PayPal address is ksea@culturefluxmagazine.com, which is much preferred to the GoFundMe page – but if you wish to give there, the link is www.gofundme.com/fightingkflux .
Thank you.

Ah, but that’s right – I promised you some more good news.
The herbs are WORKING, and the swelling in my legs & abdomen is going down, much to my delight – and thanks to you. I’m finally able to consistently make it not only up the stairs without getting winded, but to the BIG dog park at the top of the hill, which for a while I could only get within two very steep blocks of. This, of course, is much to Ruby’s delight – but we’ve been hit with some pretty steady and much needed rain for a number of days now, and she isn’t to thrilled with that wet stuff from the sky. Still, I try to get my exercise in where I can – not only to build my strength back up after my muscles atrophied in the hospital, but it helps with the edema (legs) and ascites (abdomen). In the past 21 days, I’ve gone from 191.6 lbs. To 168.2 – with maybe 10 more to go. It’s slower, but much healthier than the prescription drugs, and well worth it.

We’ve accomplished some incredible things together. Without you there would never have been any possibility of getting better – no reason to fight, because I would have had nothing to fight with… but damn, look how far we’ve COME!
We’ve gotten this far. I promise that if you don’t give up on me, just hang in there for a short while longer – I won’t give up either.

I love you.

~ Casey