It's late · 6:06am May 17th, 2023
But my brain isn't quiet. I'm stoned out of my goddamn gourd. Don't worry, it is just my usual regimen of drugs. That's how I spent a lot of my time now. Wasted. Doesn't really help with the pain much, but makes it a bit more tolerable. All of my drugs cost over 5 grand a month. That's what it takes to keep me going. I'm in somewhat better shape because of all of it, and there's a few bright spots. My chest pains are mostly gone now, thanks to the heart med. Not having crippling chest pains all the time really makes a difference. My diabetes is better managed. Just started a new drug a while back. Four doses cost over a thousand dollars. Every time I jam one into my leg, and hit the button, I immediately come down with flu-like symptoms mere moments later. It lasts for a few days, then gets better. I inject once a week. The injections are from a gas powered needle pen thingy that drives a huge inch long needle through the skin, past the fat, and into the muscle. It stings a bit. I'd imagine that if I had more sensation in my legs, it might hurt a whole lot more.
There's times now when I don't feel anything in my legs at all. Not even pain. There's just nothing. And I am always sad when sensation comes back. Each time it happens, some small part of me hopes that it'll be permanent. But I am not that lucky.
We're getting closer getting spinal stimulator installed. But there are other things to work on. Start from the bottom up. Literally. I gotta get my tailbone fixed. One of the options on the table is total amputation. Not happy with that, but that's how it is. I need skeletal renovation. Which is a funny term. You don't associate that with the human body. Fusion, artificial discs, and other options are being discussed. The nerve augment will probably go into my neck. Don't know what to expect. Don't know what to hope for. I wouldn't mind getting some sensation in my hands back, if possible. And maybe some of the tremours might get eased. I'd like to feel the cats again, or my dog. Or just anything, really. Some days I can kinda feel something, on a few lucky days I can actually feel... but most days, my arms and legs just feel like how static on the television looks. Neurostim might help. Might not. How it even works isn't fully understood, and med nerds are still arguing and running test trials to understand the hows and whys. I don't care much about that... I just hope it works for me. Getting shocked feels great. No, really. It does. So odds are good that this'll be a good thing for me. Everybody is optimistic. I've even allowed myself a bit of cautious optimism.
Degenerative nerve diseases suck eggs.
I'm mostly stable now, and that's all that can be really hoped for. My blood pressure still goes through the roof on occasion because of pain, but the drugs make it behave. My blood sugar is still an unknown; I can't self-test. Don't have the sensation needed to manipulate the little fiddly bits. Also, when I stick my finger, there's a good chance it just doesn't bleed. So I had to fire the lancet extra deep, and kept striking bone. Felt that. Boy howdy. Makes an awful sound. But I can't do that no more, and I'm currently fighting with my insurance to get some hardware I can slap on my wetware that'll track my blood sugar. No such luck so far. Stability is good though. Doctor says I shouldn't be alive, and has said that more than once. But he also doesn't know what will actually kill me... and joked about how I'd outlive everybody in the room. I hope he's wrong. That's... horrible. Seems I am in this for the long haul.
I'll be turning 50 soon enough.
I keep waiting for cancer to show up. It runs rampant in my family. It is what killed my mother. She got diagnosed back in the 90s and was given six months to live. She was told to get her affairs in order. She died back in... 2016? She was more cancer than human cells, I found out. I'm getting to that age when cancer strikes. Well, if it does, I hope it comes prepared. Like, seriously. I don't want to linger. Not like my mom did. Or her father. If cancer comes and fucks around and fails to do anything, I am going to be in a supremely awful mood. It'll get added to the List of Things That Has Failed to Kill Kudzu. Dark thoughts? Maybe. But my dark humour is what keeps me going.
Still fighting for disability. Still no end in sight.
Went to a disability determination appointment. Was told that just because I am in a wheelchair doesn't mean that I am disabled. Among other things. It was a pretty shitty experience, and there was some shouting and profanity and I might've become just a wee bit cranky. I mean, it happens. Sometimes. The disability office found out about my fancy wheelchair, and wanted to know why I wasn't using it to find work. Well... well, um... I live out in the middle of nowhere, with no way to transport myself or my fancy 400 pound wheelchair. And I am kinda sorta sick and can barely function. Plus, I am stoned. Like, stoned. Several of my meds say not to operate heavy equipment and my wheelchair is most assuredly heavy equipment. I manage, but I am impaired. The fight has lasted over a year now. Lawyer doesn't get pain unless I win. When I started this fight, Chai was a puppy. Now, she's old. She's old, and I hate it. It's been 10 years. Ten fucking years. In 2013, I was told that I had two years left in me, at most. That was the most optimistic outcome. It is now 2023 and I don't know what the fuck happened. Or where the time has gone. The past few years have largely been one pain-filled blur all smeared together. My dog has gotten old... and that's like... the absolute worst thing in my life. She's the reason I stick around, I think. And when she goes... well, fuck. It's been on my mind a lot lately, so bear with me. I don't give a shit about myself, but my beagle... she's my existence. It might be time to take emergency measures and get Kudzu a puppy so he sticks around. All jokes aside, I do worry about what'll happen if Chai departs suddenly. Don't think I'll take it well.
It's late. I'm stoned. And I rambled. Good night.
Stable is good, cautious optimism is good. And quite frankly I feel Kudzu has been around so long just to spite the reaper. With how long the “list of things that failed to kill Kudzu” is, ol Grimmy has to be an old friend who comes round for tea from time to time.
In all seriousness it’s nice to hear from my all time favorite author, and I shall join in the cautious optimism thank the upswing continues.
You are loved, please remember that. words feel inadequacy with what you are going through, but please remember you are loved Kudzu.
Reading your blog posts both realy inspired me when you talked about the doctors treating you and all of the effort, surgeries, medicine and medical equipement you had to help you get better, and then got me incredibly depressed when I leanred that you might not qualify for disability??? (seems insane from where I stand but what do I know)
To be really honest with myself, I used to read your blogs more to keep me updated about when you might start writing again than anything else (which feels kind of awful to say), but with time, I found myself genuinly inspired by your story and rooting for you to one day get out of this.
Also it might be a good idea to talk about your worries concerning your dog and your mental state to your doctors, if you haven't. They might offer you useful advice or prescribe some therapy (or just give you anti-depressants, that's also a possibility).
wow i knew that the system was fracking you over but dam that is shitty on a good day.
remember this you have friends who are pulling for you.
I think I can speak for all of us when I say that all these years of You staying here with us proves that you're strong beyond what we could imagine. Maybe one day you'll get back to writing, maybe not, but right now, Just by talking about yourself here, you're telling an incredible tale that really inspired us and we appreciate You greatly for that.
Good luck, and keep on surviving!
Also I agree that you should get new puppy if you can handle it. Have it make friends with your current one could potentially brighten things up. New lively life has that kind of effect, you know.
Hey Kudzu, I'm glad that things have at least stabilized for you and that project Cyber-Kudz keeps moving forward and I hope that they'll start to look better soon.
And yeah, Doggos are best (though cats are really fine too). I second the idea of getting a puppy (or an already adult one, either works) - two Doggos = the fun hath been doubled (huzzah!).
I'm rooting big for you!
Jesus! I mean, wow. You are way tougher than I could ever be. I give you my respect and well wishes.
At this point the Mechanicus of sacred Mars needs to step in and help you. "The flesh is weak, the machine is immortal".
Heyo it's been awhile, I hope everything is going better for you man
You're in my thoughts Kudzu. The crap you're enduring is horrible and the system stinks. I hope you get the disability you so deserve.