How are you feeling?

[iamthatis]

Well @Chu , she’s worried that my behavior will be overheard by the owner who rents the place to us. We have one of four tiny cottages that occupy the space of a single family home, so it’s very intimate. Everybody hears everything. Fortunately two of them are empty for refurbishing at the moment. For years the owner was an old man who lived a few miles away and only showed up on the first. But he died a few years ago and now his daughter is the owner and she lives on site. These cottages were built by her grandfather 100 years ago, so they have virtually no sound insulation. The EMTs carrying me out on a gurney is a neighborhood event.

Additionally, there’s still the terminal illness thing that’s hanging over my head, and without Wendy I really don’t possess the will to put up a fight, or rally. I have no one to fight for. I’m exhausted all the time. And since this most recent week in the hospital I still feel like I’m under water. I feel drunk and dizzy. My equilibrium is shot. It takes every ounce of energy just to get off the couch and walk ten paces to the bathroom. Last night I fell asleep on the toilet for an entire hour until Wendy woke me up. My head is swimming in echoes. I have an appointment with my doctor on Tuesday.

I’m just really mentally drained and physically exhausted. I honestly don’t know what I’d do without this community. The loneliness would otherwise be crushing. I go to add an emoji, and the first thing that comes up on my phone are stickers of my baby picture and Wendy’s. It’s heartbreaking. My whole life is surrounded with reminders that it’s built brick by brick into somebody else’s. But you’re still here, so I can keep talking.

Dang, Evan, that sounds rough.

I think you do have someone to fight for, though, someone to live for - yourself. If that maybe sounds selfish, I think it's a healthy kind of selfishness, a way of caring about yourself. You can think of it this way - if you do your best to be the best version of you, flaws and all, in doing so you'd also be fighting on her behalf, too, and fighting for your marriage. If that makes sense.

Is there any chance you can set up an appointment with a counsellor? Maybe online? The emotions you're going through sound intense, and it can be really helpful to have a professional to talk to, to decompress and find healthy ways of venting what's inside. A partner doesn't always have the objectivity and training necessary to be present with all these kinds of situations. Most people don't understand that kinds of survival energies that can get unleashed when serious illness is involved.

The added difficulty is trying to emotionally process while undergoing a health crisis. Do you have any Naturopaths or anything nearby who can advise? You mentioned Milk Thistle isn't possible in another thread - what about liposomal glutathione? Sometimes IV glutathione can really do the trick and sort of briing people back from the brink, as it really helps the liver to process things, as well as NAC and ALA.

Sending you a big hug, dude.

 

[Evan]

Dang, Evan, that sounds rough.

I think you do have someone to fight for, though, someone to live for - yourself. If that maybe sounds selfish, I think it's a healthy kind of selfishness, a way of caring about yourself. You can think of it this way - if you do your best to be the best version of you, flaws and all, in doing so you'd also be fighting on her behalf, too, and fighting for your marriage. If that makes sense.

Is there any chance you can set up an appointment with a counsellor? Maybe online? The emotions you're going through sound intense, and it can be really helpful to have a professional to talk to, to decompress and find healthy ways of venting what's inside. A partner doesn't always have the objectivity and training necessary to be present with all these kinds of situations. Most people don't understand that kinds of survival energies that can get unleashed when serious illness is involved.

The added difficulty is trying to emotionally process while undergoing a health crisis. Do you have any Naturopaths or anything nearby who can advise? You mentioned Milk Thistle isn't possible in another thread - what about liposomal glutathione? Sometimes IV glutathione can really do the trick and sort of briing people back from the brink, as it really helps the liver to process things, as well as NAC and ALA.

Sending you a big hug, dude.

Well, as for those treatments, they’re not available with the kind of basic MediCal that I receive. I can’t even get access to a swimming pool for low resistance exercises. Then there’s travel. I’m on the edge of Orange County, which is huge. Everything is miles away and I can’t drive myself (I had to sell my car in May to keep the rent paid). I can’t walk to the bus stop. I’m housebound unless Wendy takes me. I’m so exhausted - every five minutes feels like an hour of intense discomfort and pain. I just wish I could go back to sleep, but I’m awake, so it’s just sitting here waiting until the opportunity comes that I can check out for another eight hours.

I do very much understand the notion of life for myself. It’s good to be reminded. But the reality is that my self is tired. It’s ready for the next one. I’ve felt that way for a while. Years in fact. I’ve really just been doing it for Wendy. I thought she needed me. Five years ago I spent a month in the hospital. I had four broken ribs and a pleural effusion with staph. I got out with a portable antibiotic pump that I was to wear for six weeks. The day I got home, I found out that my brother had dumped my mother at a group hospice and tried to list her apartment for sale. Wendy and I got in the car, stole back my mom and took her back to the apartment she thought was gone. The joy on her face that her home was still there. I took over her care and moved in. So while I was recovering with this stupid pump in my arm, I was spoon feeding my dying mother.

In a way, that act of caring for mom was the measure of my person. I had fulfilled my obligation as a good son (unlike my piece of shit brother). But that also felt like my final push, and now I’m just tired, out of gas. Wendy (and this community) has been my strength for the past few years, and now that’s in limbo. We’ve been living off the proceeds from the sale of my mom’s apartment, and very soon Wendy will have to go back to work. That will give her purpose, but also mean that I’ll have to find a way to not be burdensome. And if she does decide to move out, I have no clue where I’ll go. I’m not certain I’m sick enough to qualify for hospice yet. It’s all so much, and my head is still swimming, so I can’t think clearly, or focus my thoughts. Right now I’m still in the midst of this proverbial storm.

 

[Evan]

I should add @Gaby I just washed down a fistful of Liposomal C, as you recommended. Washed it down with beet juice. Let’s hope it stays down with the lactulose. Aughh, whatta diet!

 

[Joe]

Apologies if you've spelled this all out somewhere else Evan, but what is your current medical condition? (short version is fine)

 

[Evan]

Apologies if you've spelled this all out somewhere else Evan, but what is your current medical condition? (short version is fine)

Hey @Joe, I just paused @Niall on my tv watching NewsReal, so thanks for taking the time out of your busy Sunday to ask. My current medical condition is advanced decompensated liver disease. That’s the basic answer. There’s other stuff, (degenerative spine disease with 13 spinal fusions) but that’s the big show, so to say.

 

[Joe]

Hey @Joe, I just paused @Niall on my tv watching NewsReal, so thanks for taking the time out of your busy Sunday to ask. My current medical condition is advanced decompensated liver disease. That’s the basic answer. There’s other stuff, (degenerative spine disease with 13 spinal fusions) but that’s the big show, so to say.

How old are you?

 

[Evan]

How old are you?

59

 

[Evan]

Apologies if you've spelled this all out somewhere else Evan, but what is your current medical condition? (short version is fine)

Actually I should’ve said Advanced Decompensated Liver Cirrhosis. “Disease” implies a range of conditions.

 

[Joe]

Are there any prospects of a liver transplant?

 

[Evan]

Are there any prospects of a liver transplant?

I don’t qualify for the list because I’m on pain management. I plan on breaking up with Dr Feelgood this Friday. I see the hepatologist Thursday. But transplant surgery, and permanent reliance on anti-rejection drugs..aughhh! It really has no appeal because then, sure I get to live longer, but with chronic pain in my spine and no medication? God it’s like a choice between pain and relief via door 5D. Am I prepared to have my soul smashed? I wonder if I’m entirely in possession of my wits or is my ammonia level rising again? I’m like brain drunk. I stand up and it’s like I’m in water. This is ongoing since I stopped taking the pills. Going on days.