How are you feeling?

[Evan]

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.

I’m with you (and your Joshua). Just make sure he’s getting enough lactulose to keep him pooping at least twice a day. I literally peed in my clothes drawer while Wendy was calling for an ambulance just, what, two weeks ago now? Yeah that’s the gig, my friend! It ain’t pretty.

I’m beginning to wonder if the mods should break this off into it’s own thread: Currently In Distress!

 

[Echo Blue]

Yup......Josh is taking lactulose. But, they have more than doubled the dose t0 three times daily. And he is still not pooping regularly. When we see his doctor again tomorrow, I want to have an x-ray done to see if he his impacted.

To make things more interesting, Josh also has NO RECOGNITION OF PAIN. I didn't even know this existed in humans until he was probably about 11 years old. Not aware of pain, not aware of being hot or cold..........just OK!!! Even some of the doctors he has seen have never heard of someone NOT reacting to pain. I shut his hand in the car door once when he was about 3 years old. I was walking with groceries and I looked back. He was just standing by the car with his hand shut fully in the car door - and not reacting. Not crying. Nothing. Not until he was maybe 9 years old I googled "doesn't react to pain" and there it was!!! It is a real thing. So he possibly has had stomach pain, but does not recognize the pain. HOW CRAZY IS THAT!!!

 

[Evan]

Yup......Josh is taking lactulose. But, they have more than doubled the dose t0 three times daily. And he is still not pooping regularly. When we see his doctor again tomorrow, I want to have an x-ray done to see if he his impacted.

To make things more interesting, Josh also has NO RECOGNITION OF PAIN. I didn't even know this existed in humans until he was probably about 11 years old. Not aware of pain, not aware of being hot or cold..........just OK!!! Even some of the doctors he has seen have never heard of someone NOT reacting to pain. I shut his hand in the car door once when he was about 3 years old. I was walking with groceries and I looked back. He was just standing by the car with his hand shut fully in the car door - and not reacting. Not crying. Nothing. Not until he was maybe 9 years old I googled "doesn't react to pain" and there it was!!! It is a real thing. So he possibly has had stomach pain, but does not recognize the pain. HOW CRAZY IS THAT!!!

Congenital Analgesia? Or is it called Anhidrosis? I’m not sure. To be honest, I heard it in an episode of The Blacklist where this guy “The Courier” carried items IN his body, under sutures. Crazy the places you pick shit up! I’m very sorry to hear that your Josh actually has something like that. So there’s no discomfort in his bowel to use as a guide. I had to up my lactulose from 60ml to 75ml to get going again. It’s a horrible medication to be on. The flatulence alone will send the cat running for the corner of the room. But keep upping it until it gets the job done. That’s what my hepatologist made clear.

 

[Joe]

I'm sorry you're having to go through all this Evan, but your humor and positive outlook through it all is admirable.

 

[Evan]

I'm sorry you're having to go through all this Evan, but your humor and positive outlook through it all is admirable.

Which is exactly why I spent the whole of yesterday watching The Marx Brothers Animal Crackers, Duck Soup, and A Night In Casablanca. If I’d had a copy of Young Frankenstein, my comedy fest would’ve been complete. I sobbed through most of it, but Captain Spaulding’s trip through Africa still did the trick. Now I’m watching Quentin Tarantino at his Japanese Samurai gore peak, Kill Bill, and finding myself laughing more than I did yesterday. So that’s progress!

 

[Evan]

Well, I quietly asked her permission to buzz my hair off (been wanting it cut for months) and she said, “No.” Which means she still intends to do it. That’s what I would normally call a giant leap, though I’m cautious of reading too much into it, but it’s something. It feels like caring.

 

[Maya]

Hey Evan, I've read everything you wrote and I'm just speachless.
I'm so sorry you have it so tough.
Just wanted to send you a big hug across the world.
I wish you the best possible outcome for you and strenght and gentleness for youself in whataver comes.
You are loved and appreciated !

I'm trying to articulate for at least a month how am I feeling here, but words do not come.
With so much pain in the world right now I'm in between overwhelmed and numb all the time.
Perimenopausal hormone rollercoaster also do not help. Most days I don't see any reason to be here on 3D anymore.
It's like if I vanish this right moment nobody would even notice.
Maybe only at home when they would eventually run out of loundry and starve to death ?
So, I understand....

Take care guys, all of you

 

[Gaby]

Well, I quietly asked her permission to buzz my hair off (been wanting it cut for months) and she said, “No.” Which means she still intends to do it. That’s what I would normally call a giant leap, though I’m cautious of reading too much into it, but it’s something. It feels like caring.

Have you tried drinking DMSO?

How DMSO Protects and Heals the Internal Organs

The evidence behind DMSO's utility for a myriad of challenging diseases

www.midwesterndoctor.com

•This author reported on a study with 12 patients who had terminal liver cirrhosis who agreed to stop drinking all alcohol for the duration of the program were put on daily oral DMSO and aloe vera. Of the 8 who chose to continue the program for 6 months, all had improved health, significantly reduced vomiting, and improved liver function tests, and rather than all being dead within one year as expected, they were in better condition than they had been at the start of the study.
Note: if using DMSO for cirrhosis, it is critical to stop consuming alcohol, as DMSO can slow the metabolism of alcohol.

I would do 1 teaspoon of DMSO plus 1 teaspoon of aloe vera in a small glass of water.

 

[T.C.]

Am I prepared to have my soul smashed?

So, going back to what you were talking about in your first posts about this…

It sounds like you are in a place where you feel you are responsible for your medical condition, and for the problems it has caused you and your partner, and that the cause of the condition together with the consequences will lead to you having your soul smashed after you transition. That’s what you meant when you were talking about losing your memories and experiences.

Is that right?