Forever Is Composed Of Nows

Still believe forever is now because I can actually live it; still experiencing all the things with @gorillasushi

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Why gone so soon?

Honestly if you’re asking you already know. It’s OK, I had a story to tell, it’s not going to get told here, but those closest to me will get to live this life out with me. I have not, do not, and will not EVER have anything to hide. MY history is not revisionist. I’m now just demanding that respect I was talking about and won’t settle.

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And we’re done here. That was quick. I’m sure there’s another place, a paper journal likely, when I can write properly again, where the rest of this journey will go.

Thank you for caring that I got a transplant. Thank you for caring that I lived.

I will take good care of this heart.

Bye y’all.

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It’s taken days to write this, both because of some cognitive issues right now, AND because some things are relevant but difficult to adequately express. I woke from this surgery thankful, anxious, not realizing what I’d gotten myself into, and apparently my nurse tells me, singing about how I love applesauce (in my opinion I don’t love applesauce that much but the proof is in the tune).

I have found that I woke up with a spine. It’s not aggressive, but it’s very much there. It HAS to be there now. If I’m going get 110% out of this gift, out of all I’ve already fought for in this recovery, I need to matter. I need to exist out loud and with purpose. I promised no vague posting so we’ll bulldoze our way straight through this. The reason we stay away (speaking only slightly for Jason he has his own voice), is that some really unkind and cruel things have been said over time. Things that have ebbed and flowed over time, things that quite frankly hurt because I WAS spending so much time being purposefully and deliberately kind through a maelstrom of ugly.

This whole change of mindset hasn’t been dark, negative, or ugly. It seems to me it’s come with a peace I’d been looking for but could never find in a centered way. I will be kind, as kindness is so important to me, I will love and enjoy what I want, as enjoyment is not owned or branded. I will continue to develop as the old me, and the new me, combined into decent happy human. You will continue to feel my love, support, and kindness. However, you will show me the same. I now have expectations of that, I deserve that.

I had an echo today. Every time I hear Francesco I cry. He sounds like a heart, no extra third weird beat, no pauses. I owe myself and the person who sacrificed this for me to be the best possible version of me, for forever. The best possible version of me matters and she’s going to uphold that for herself, in the very contented life I grow with Jason, and simply because we all deserve to matter.

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I don’t know why it happened for me this way, but when the call came it all became VERY intensely personal. I hadn’t waited long enough, I was listed but yet somehow it was still a surprise. I was making a choice in almost a very impulsive way, in a way that was equally about other things that were going on in my life at the time. I was very prepared to die, in fact I kinda knew I was in that moment, but somehow making the choice to accept an organ is very individual and personal. It’s huge and makes it a very private moment. In that moment the choice I made was the obvious choice, I get to live, but it wasn’t without huge mistakes on my part, that along with the physical repercussions, have had real mental and emotional repercussions that are still ongoing for me.

Pulling away from the mental and emotional aspects, transplant is the most physically difficult thing you can possibly go through. You are so focused on the organ, in my instance a heart, that you really don’t know that the rest of your body is going to be completely ravaged. It wants you to fuck ALL the way off for inviting a new friend to the party. I woke from surgery with an acute kidney injury, 32 pounds of pitting edema, a chest tube that needed to go back in which was basically excruciating, and then finally an internal bleed that required removing part of my lower bowel and now I have a stoma. Thankfully that will be reversed eventually but I’m going to have to have it for months. Because of the mass doses of prednisone I’m on I have a giant moon face and blood sugar issues. I cry like a three year-old needing a nap very impulsively. Nothing about me looks the same. I am losing my hair, it’s not thinning I’m losing it in giant clumps, so I have to decide what I’m going to do about that. I have cognitive difficulties which require me to do this entirely talk to text. Due to a medication called tacro, which is the main anti-rejection drug, I shake a lot, and am in special therapy to learn how to use my hands again. I use adaptive silverware and also adaptive writing tools. I am me, inside, but also I am not me at all, and I’m learning to share space with old me and new me.

I am so thankful for this opportunity, seeing my old dead heart with an ejection fraction of 17, and then having this new heart in me with an ejection fraction of 66 is mind blowing, almost incomprehensible. Francesco is STRONG.

Yes, the sharing of all this will not be linear, I’m learning that quickly, but it will allow me to document things I know I’ll otherwise forget. Things that may impact how life turns out for me. 

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This definitely is not going to be told in a linear way. As organized as I am, and as much as I want to go ahead with each detail that follows the next, that’s not going to happen. This morning I’m just laying here, looking at archives, hurting my own feelings. Not quite sure why we do that, but I know I’m not the only one.

One thing I promise you I will not do, is vague post. If I put a topic out there I’m going to be transparent about it, with as many details as I feel safe offering. I have two personal situations that I will not be discussing in a relation to what is going on in my life right now, one is my youngest son, the other is mistakes I made with Jason. They are definitely healing and resolving but not for public consumption. Period. I just want to be as upfront as possible. 

Time to step away from the self flagellation and doubt, and step into this day and get stronger.

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I think I need to start with the dying part, before getting to the living part. It’s the part that makes people most uncomfortable, yet it’s also the piece that I need to reconcile because it’s so big, and was so definitive. Most people want you to just forget about the dying and move on, but having an extremely solid conversation with my surgeon, and evidence I could see with my own eyes provided to me, that I only had a very very short time to live, is something that I need to process for myself. As with a lot of this I am hoping that just speaking it aloud is going to help me process, accept, and move on. 

What I didn’t know about dying, was that it creeps up on you quietly. At least it did for me. I knew I was in poor shape, for weeks before I could tell that I couldn’t do things, I couldn’t be up very much, everything was just slowly going away. I’d lapse into sleep out of nowhere. I however have been fighting this for so many years, that I don’t think I understood really acutely how bad it was, while at the same time being very aware of it. I even had a plan in my mind of having an ambulance accessible and going to Starved Rock wrapped in a bunch of blankets to die. It’s a special place, and just as much as I wanted to get married there, it would have given me just as much peace to die there.

After surgery you have a lot of conversations with your surgeon and your team, and also you don’t know definitive information until you have been opened up and they actually see with their own eyes what is going on inside of you. Tests help, imaging helps, but seeing it with their own eyes gives answers. Inside they found what looked like a bruised tiny extremely insignificant organ that wasn’t going to last but a few more weeks. I was dying, I was dying very quickly. It is very surreal to feel like you are standing in footprints now that you’re not supposed to be in. I am still standing in the footsteps of a person that’s not supposed to be here. I would not be here definitively, not today if it weren’t for some magical weird coincidence. It seems uplifting, but it’s something that has to be dealt with that is bigger than what you anticipate. You’re not supposed to be here yet you are here. And I understand the bigger picture, I don’t think about that aspect of it. However, each and every little step of this puzzle has to be accounted for in order for you to make it through the process.

I guess that’s a good start, there will be lots more. 

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Being chronically ill, terminally ill, can feel so completely isolating sometimes. Especially when you’ve been doing it for a long time. You fight so hard, for so long, that eventually your fight becomes *the norm*. You know that the world surrounding you becomes weary of it. Your indomitable fight becomes less admirable and more expected of you, your facade becomes necessary to spare everyone of the monotony of your reoccurring crisis. Your crisis becomes something so mundane that when you have one you’re obligated to deflect, “it’s fine, I’m fine, everything is fine because everyone has problems”. People’s reactions change, and you accept that they have every right to. Then there’s the guilt that sets in and you can’t express how much you still sympathize and empathize with their problems, that you in no way feel your problem eclipses anyone else’s. So you bury things inside, you make it a point to deflect and look outward, you minimize.

Inside though it’s so empty, because you know that no one can know what it’s like to be so terrified that this episode could very well be the last episode, and you can’t blame them, it’s good they can’t fully understand. Or that the pain of having a wire and catheter shoved down your jugular for the umpteenth time is exhausting, no matter how used to pain you are. You know that after years of gentled care by those closest to you that it’s inevitable that it gives way to a generalized resigned acceptance. A refocus on themselves, that they quite frankly deserve. You can’t expect gentle coddling anymore because it’s just *life* at this point. The effort of masking, the guilt that this is who you have become, honestly eclipses anything physical you may have to go through. Each time though, behind the facade, it’s still the same for you, heightened, terrifying, exhausting. It never becomes normal.

I’m not *back*, I just needed a yell into the void moment, and this is the most private void I have.

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A long time ago, before this blog became a sadly failed attempt at a diary to leave behind, it was a place I could put pictures I wasn’t comfortable with on my main blog. Mostly my pool pics in a 2 piece swimsuit and occasionally (clothed) full body shots in my bedroom mirror. I was trying to combat my extreme body dysmorphia. As life itself is pretty much winding down for me, it’s fitting I should end this blog with the ultimate exposure of reality. A full on face off with that dysmorphia.

I won’t even start with the story of “once I was thin…”, it seems once we all were, some still are, because bodies come in all shapes and sizes. After the heart attack my already larger, curvy frame put on a lot of weight. I’ve taken off 30 of those pounds, but not all of it. In the past year between health and circumstances I’ve taken off and put on 10 pounds over and over, so here I still sit at 30lbs down. Between the massive amount of medicine I take and my age, my body didn’t bounce back as it once did.

The real me is soft in most places. I have a belly when I sit, it used to be totally flat when I stood, now it retains a bump. The bottom of my belly where my c section scar is, is crepey with loose skin from losing the weight at my age (there’s just no way to show it without revealing more than I want to). Where my belly button is, is no longer taught. My waist to hip/thigh/ass ratio is dramatic. I have *violin hips*, where instead of curving smoothly out from waist, to hip, to thigh, there’s a very defined hip bump.

This is actually the only real full view of me, and all those flaws, you ever have or ever will see. One that doesn’t include angles or carefully covered areas. These are super private pictures and I’ll also admit even these are not the worst (to me), or most raw, pictures of me that exist. However they make the point. This is what I really look like. Imperfect. It’s what’s made even worse and more distorted by severe body dysmorphia.

If it’s the same for you, I hope this helps you. We’re all real, we all have flaws.

We all live in a way here that logically shows ourselves in the best light. In a way we’d like the world to see us, or how we’d just plain like to look. I think that’s okay. It gives us a boost, a little self esteem, that dopamine hit that we need. We pander with words, reblogs, and photos in ways to seek attention sometimes. *Most* of the time it’s without malicious intent (I reserve the right to think sometimes it’s otherwise), but it’s just because we need the attention or validation for a myriad of reasons. I’ve really come to think that’s okay too. I’ve always wanted to live in a way that lifts people up, not tear them down. I’ve always found it easier to be kinder to others than I am to myself.

So I’m ending this particular blog, in pretty much the way it started, but on a more glaring, very realistic note.

As always, be good, be kind, don’t be a dick, and love you

~K

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I’ve been trying to work up a post but the words aren’t coming. On this day last month I was in the ICU, I’m writing this from the ICU again. I’ve been sitting here for hours, just watching the rain and listening. Sometimes when I play a song I like it will just move to other songs it thinks I might like. I liked this, I’ve never heard it before.

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My first Axolotl and some nature today

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I was once told that I “expertly adapted to the emotional climate I lived in”, and thats how I survived. That I was essentially a living mirror for everyone around me, reflecting what they wanted to see/hear/feel to keep them happy and to try and make them love me. A pretty brilliant articulation of the situation if you ask me. I think I still do that to some degree, hoping so hard I’m being what people want me to be, but I’m not a mirror anymore. I want to be loved, it still drives me more than it should, ironically because I’ve spent a lot of years self isolating, but it’s just for who I actually am now.

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Well I think I'm losing my mind, this time

This time I'm losing my mind, that's right

Said I think I'm losing my mind, this time

This time, I'm losing my mind

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Captains Log 4:29am - *lots of words warning* for those who skim not read, no judgement, just a heads up

I’ve been up since 2:30am, staying off my phone in a valiant attempt to go back to sleep. The insomnia is strong, we’re going on multiple weeks now. It’s incredibly unhealthy considering, well you know, the heart.

Is there ever a time for the rest of my life that this heart isn’t going to play a part in every conversation, thought, post? Having a barely usable heart I imagine the lesser organs you can live without, like my appendix or gallbladder, feeling all vindicated like “don’t you wish we had organ equality now?” Further proof that equality IS important. The heart is way too superior, it’s like the Bezos/Amazon of organs, “you can try but you just can’t quit me”.

Life’s been complex, having a recent hospitalization and new complications doesn’t eliminate the need to also care for my father. His declining Parkinson’s and all that goes with it is pretty bad. We’ve added mini strokes to the mix lately. My mother certainly isn’t more capable of handling things, they’re 84 and even if she was 60 she still wouldn’t be capable. My autistic 25 year old, who currently lives with me, had his 16 year old dog pass away. He’s had this dog since he was 11 and she was, in the truest form, an emotional support animal. She was his everything in a world that’s too overstimulating and difficult to navigate for him. All this while I’m attempting to move forward in a relationship with a partner that seriously has the patience of a saint, I have no idea how he does it.

Life just isn’t always walks, music, reading, journaling, calm, happy, joyful, nature, and an “I’m so thankful for everyday” positivity. Sometimes it’s fucking hard, and that’s okay. We gravitate to others that are “always” happy, positive, funny, and light, it makes us feel inferior at times but it’s what we want to mirror. Honestly though, that’s just what they’re allowing you to see. That was me for heavens sake, for a really long time. I was that scrappy survivor that was always overcoming insurmountable things with a chipper attitude. I still have a pretty good attitude, I’m still on top of shit, I’m just no longer denying that sometimes it sucks pretty bad to have to juggle chainsaws. That’s the way life goes. Eventually this will pass and I’ll be back to scenic photos, happy experiences, whilst you hear Eye of the Tiger playing in the background. Until then, it’s okay to suck a little, life isn’t perfect and either am I.

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April 11, 2025

Because I’m a little too up close and personal, but also this being a journal for me and all, somewhat…

I put myself in Tumblr time out, for something I did, or felt I suppose if I’m going to be honest. Five days and I stuck to it. I think I can behave now. I’m always the strictest with myself. I may have personal feelings of inadequacy but I also have certain boundaries for myself.

Beer never hurts as a reward either. As Tom and Donna taught us, you have to treat yo self. Since I don’t like to buy clothes or fine leather goods I’m having music and beer.

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I have to keep taking nests off the pergola before they lay eggs. I just have to keep a ladder out here right now. I love nature but I want my house to show nicely without shit all over the furniture and table, the beautiful pergola and outdoor dining should be a perk to the house.

I have no trees in my yard sadly but I admire the beautiful one behind my back fence line.

Handsome boy loves spending as much time outside as possible.

It’s hammock time again! It’s the little things that spark SO much joy.

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Today is always family I Miss MCA Day in our house

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I’m so jealous of all the pictures of lilacs y’all have already. I had three antique lilac bushes as big as trees in my yard when I lived in Ohio, I love them so much. We in WI have…well some grass, looks like there’s grass out there, yeah that’s it.