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.

 

[Evan]

@forest_light Thank you again for your beautiful words. It’s been ages since I have read or heard Desiderata. I think the last time was a plaque on my drummer’s wall in 10th grade! It’s a wonderful reminder.

 

[iamthatis]

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.

A while ago, I was advised to just forget about the money issue and get what I needed to heal. I went into debt and was seriously considering bankruptcy. I'm not sure what your situation is, and it's not advisable in every circumstance, but in addition to getting the medicine I needed, it was a great exercise in letting go of some money programs and also stepping more fully into trusting the universe. I spent a lot of time in prayer with that exactly in mind.

Do you have any friends, acquaintances, old bandmates, a neighbour, your landlady - anyone in the area at all - who you could ask for help with travel, if you were to find a healer and Wendy can't drive you?

 

[Breo]

@Evan, I just want to send you a big hug too
And if thats ok for you, you are in my prayers.

 

[Evan]

A while ago, I was advised to just forget about the money issue and get what I needed to heal. I went into debt and was seriously considering bankruptcy. I'm not sure what your situation is, and it's not advisable in every circumstance, but in addition to getting the medicine I needed, it was a great exercise in letting go of some money programs and also stepping more fully into trusting the universe. I spent a lot of time in prayer with that exactly in mind.

Do you have any friends, acquaintances, old bandmates, a neighbour, your landlady - anyone in the area at all - who you could ask for help with travel, if you were to find a healer and Wendy can't drive you?

In a word, no. I truly have only Wendy. No friends, family, certainly not my landlady because she’s technically Wendy’s landlady. She’s had this place since 1996, while I only re-entered the picture in 2015. It was a long time coming to our finally becoming a marriage. But last night, she kinda warmed a bit, “Where’s the Fuffet?” (our kitty). She said she doesn’t want to leave, but she’s unhappy living with me here, so I’m sort of at a crossroads.

Bankruptcy doesn’t scare me, but I don’t have the credit to generate any debt to get to that place. I paid cash for our cars (his and hers on the same weekend). I sold mine, but I would never take hers, leaving her with no transportation or ability to work. That would be a hateful thing, and I’m not capable of doing anything like that.

The only resource for travel is that MediCal provides transportation for medical needs. So I can get to doctors. That’s one thing I have going for me. Groceries I can have delivered.

But living here, possibly undergoing transplant surgery, and everything that follows…all the time knowing Wendy is miserable that I’m stuck under her roof. God it’s awful. She has to go to work and then oversee my recovery? Resenting my very presence? It’s easy to fall into negative feedback loops when I go there. Good Lordy, is this what hyperkinetic sensate is like? Or just normal human fears? I’m definitely not prepared for the former! LOL!

 

[Echo Blue]

Hello Evan,

I have been reading your thread in "how are you feeling". And you said something that I have only heard recently said by my son's Primary Care Doctor. You sad: "I wonder if I am entirely in position of my wits or is my ammonia level rising again?"

OMG.....my son was just diagnosed with scarring on his liver after an endoscopy. Doctor doesn't know why. My son Josh is 41 and was born with Down's Syndrome, just to give you some background of who he is. Josh has always been an easy to care for child .and extremely healthy individual. Now, at 41 and for the first time in his life, a few months ago he began acting in a very bizarre way. I had no idea what was causing this extreme change in personality. So, about 6 weeks ago, I made an appointment with his primary care doctor. He was acting bizarre ..... taking all his clothes out of his closet - bringing them into the shower and thoroughly wetting the clothes and then putting them back in his closet dripping wet. And he would be really aggressive with me if l tried to intervene. He has never, ever been aggressive in his life.

It took three visits to his doctor and finally more blood work to reveal that he had extremely high levels of ammonia in his body and that affects the brain in negative ways and affects personalities, sometimes to the extreme, which was happening to my son. But just because I now know what is going on, we had to figure out what to do. And, it turned out that he was not emptying his bowels and that is what was causing the rising ammonia levels.....constipation. Even today with medication to help him "poop" his emotional levels of anger and strange behavior pop up ever so often out of the blue.

So, ammonia levels can cause emotional flare up's of anger, fear, confusion and probably more. And this is all new and strange to me. We are waiting now to have a biopsy of his liver. Don't know what caused the scarring on his liver. Josh has spent all of his life healthy until this point in time. And, as his mother I find myself wondering what I missed. But sometimes life just happens.

I have been very stressed the last few months wondering how I can help Josh. But apparently this needs some kind of corrective medical attention - what that might be I hope the biopsy will shed some light on.

I just had to tell you that you are not alone in your struggles. Life can certainly mess up your hopes for a normal life. But, I do wish you strength and patience in what
ever the future holds for you....and for my son Joshua.

You are in my thoughts and prayers. Wishing you strength and hope for the best possible outcome.