Discussion Anyone here terminal or with disease including chronic/immunological symtoms?

[JustVisiting]

https://sanctioned-suicide.net/thre...e-to-get-this-out-nowhere-else-to-turn.28356/

My story above. Searching for others.

 

[BPD Barbie]

I have Crohns disease, no cure. Surgery, clinical trials, immunosuppressants, you name it I've had it or done it.

 

[APharmaDestroyedLife]

I have a Rare blood disorder caused by a gene mutation, no treatment, no research, no clinical trials. All they can do is give me meds to manage symptoms, but so far every med has made it worse.

 

[JustVisiting]

I have Crohns disease, no cure. Surgery, clinical trials, immunosuppressants, you name it I've had it or done it.

i'm sorry. i see you.

I have a Rare blood disorder caused by a gene mutation, no treatment, no research, no clinical trials. All they can do is give me meds to manage symptoms, but so far every med has made it worse.

i see you. i replied to you on my other thread. here if you want to vent.

 

[couragetodie]

I have a Rare blood disorder caused by a gene mutation, no treatment, no research, no clinical trials. All they can do is give me meds to manage symptoms, but so far every med has made it worse.

Is it polycythemia vera?

 

[BPD Barbie]

i'm sorry. i see you.

Thank you. The sad thing is is that I'd rather have a physical disease than a mental one any day of the week

 

[Fragile]

i have an undiagnosed connective tissue disorder, basically every single part of my body is affected to some degree.

crohns disease, terrible gastritis, bad respiratory allergies, thyroid issues, tinnitus, chronic fatigue and joint pain, gallbladder tumors, the list just goes on and every year there is something new and those are just the ones that are formally diagnosed.

doctors refuse to diagnose my specific illnesses because there is no treatment or they just don't want to bother involving a geneticist, healthcare system in my country absolutely sucks for most people and specially for the ones with a rare disease.

 

[Elbarado]

Well i have probably ALS. you cant say it for sure, just by time,but the symptoms are clear, im getting weaker and weaker and my muscles disappear. i just turned 34 and my life was good 1 year ago, had a lot of friends, went out, did a lot of sports.
it all started with shoulder problems, followed by muscle fibrilations, know i have problems with almost any joints, spine and sometimes swallowing
And because the docs said its your psyche my whole family believes in this. I get no physical help and i am isolated now.
Its cruel in both ways, physical and mentaly.
The future will be whellchair or maybe i suffocate before. Either way, thats not my life.
The fucking big problem is, i wasnt depressed before and i love life, but not this way. I would ve never come to my mind to ctb and thats what it makes so hard for me. I dont want to die, i dont want to ctb, but i dont want to be disabled , getting supported by everything even breathing, and be locked in my body, while my brain is working.
Its a fucking dilemma. Every outcome fucked up

 

[mediocre]

I don't know if I have anything terminal but I am in constant pain all over the body. I have gastro and bowel issues. I have no answers for most of my pain and nobody wants to help me. Everyone says healthcare in the US is bad but here it really is shit. At least in my experience anyway. Yeah it's free but it's slow and inefficient. Lots of people are misdiagnosed. I got a gastroscopy and found out I had a haitus hernia. You know what I got for it? a leaflet explaining what it was. A fucking LEAFLET and told it's no big deal even though I told the doctor I could barely breathe. Zero aftercare. Unless they think you are literally dying you get no help. Unless something shows up on a scan your problem is not investigated any further. Case closed. Doesn't matter if you're in excruitating pain. If you had something serious going on it could spread throughout your body before you were able to see a doctor. I suspect I have nuerological problems. Have had them for years but my dumb GP has done nothing about it. I'm going to see if I can get a referral for a nuerologist. Something my GP should have figured out years ago but it's been up to me to research it myself. Guess how long the waiting list is for a nuerologist? 2 YEARS. Best healthcare in the world my ass. Sorry about my rant but it made me feel a little better...

 

[APharmaDestroyedLife]

I don't know if I have anything terminal but I am in constant pain all over the body. I have gastro and bowel issues. I have no answers for most of my pain and nobody wants to help me. Everyone says healthcare in the US is bad but here it really is shit.

Healthcare everywhere is a joke , in the USA they just throw pills at everything. Doctors only know how to cure things like broken bones.

The management of chronic conditions comes down to toxic medications to manage symptoms but never fix the root cause of the disease or reason the symptoms are there. Then in time those medications turn against the person and cause more "symptoms" which are really just side effects and toxicity from daily pill popping, so they prescribe more meds for those symptoms.

Our toxic and polluted world is making us sick, and Pharmecutical companies are not trying to cure anything, while doctors just believe whatever the pharma sales rep tell them and match symptom (X) with medication(X)

 

[mediocre]

Healthcare everywhere is a joke , in the USA they just throw pills at everything. Doctors only know how to cure things like broken bones.

The management of chronic conditions comes down to toxic medications to manage symptoms but never fix the root cause of the disease or reason the symptoms are there. Then in time those medications turn against the person and cause more "symptoms" which are really just side effects and toxicity from daily pill popping, so they prescribe more meds for those symptoms.

Our toxic and polluted world is making us sick, and Pharmecutical companies are not trying to cure anything, while doctors just believe whatever the pharma sales rep tell them and match symptom (X) with medication(X)

I realize this. I'm just so frustrated. Especially when I hear people talk about how great healthcare is here.

 

[APharmaDestroyedLife]

I realize this. I'm just so frustrated. Especially when I hear people talk about how great healthcare is here.

Still, I'm sorry you're dealing it. It sucks when all you want is answers and to feel better and you get put on a wait list and are not made a priority.

 

[zomboy]

yes. severe crohn's disease. I'm on chemotherapy and immunologics for it. it keeps me living, but not very comfortably. recently diagnosed with a degenerative spinal disease as well that is making it painful to even move. not even 20 yet, but diagnosed with something new every year it feels like.

 

[issyishere]

I have Crohns disease, no cure. Surgery, clinical trials, immunosuppressants, you name it I've had it or done it.

Ayyyyy crohns gang <3 not the main reason for me but definitely contributes

 

[JustVisiting]

Thank you. The sad thing is is that I'd rather have a physical disease than a mental one any day of the week

@BPD Barbie - one really isn't better than the other. trust me, i've found that physical disease definitely leads to mental disease. i'm already plagued by early childhood & young adult abuse & trauma causing clinical PTSD, etc. so now there is both. yay (insert eye roll here)

yes. severe crohn's disease. I'm on chemotherapy and immunologics for it. it keeps me living, but not very comfortably. recently diagnosed with a degenerative spinal disease as well that is making it painful to even move. not even 20 yet, but diagnosed with something new every year it feels like.

@zomboy i'm sorry. absolutely hate that for you ❤

i have an undiagnosed connective tissue disorder, basically every single part of my body is affected to some degree.

crohns disease, terrible gastritis, bad respiratory allergies, thyroid issues, tinnitus, chronic fatigue and joint pain, gallbladder tumors, the list just goes on and every year there is something new and those are just the ones that are formally diagnosed.

doctors refuse to diagnose my specific illnesses because there is no treatment or they just don't want to bother involving a geneticist, healthcare system in my country absolutely sucks for most people and specially for the ones with a rare disease.

@Fragile - is it EDS? i have friends that have it along with a list just like you. i know very well about the unwillingness to specifically diagnose the rare ones. it's complete BS. it's not health care. it's "sick-management until you die." ❤

Well i have probably ALS. you cant say it for sure, just by time,but the symptoms are clear, im getting weaker and weaker and my muscles disappear. i just turned 34 and my life was good 1 year ago, had a lot of friends, went out, did a lot of sports.
it all started with shoulder problems, followed by muscle fibrilations, know i have problems with almost any joints, spine and sometimes swallowing
And because the docs said its your psyche my whole family believes in this. I get no physical help and i am isolated now.
Its cruel in both ways, physical and mentaly.
The future will be whellchair or maybe i suffocate before. Either way, thats not my life.
The fucking big problem is, i wasnt depressed before and i love life, but not this way. I would ve never come to my mind to ctb and thats what it makes so hard for me. I dont want to die, i dont want to ctb, but i dont want to be disabled , getting supported by everything even breathing, and be locked in my body, while my brain is working.
Its a fucking dilemma. Every outcome fucked up

@Elbarado - wow. i hear you. i see you. so not okay - any of it! and i get it because physical pain/illness leads to debilitating mental disease, far more often than not. i don't want to be locked in just my body or just my brain either. what's the point? ❤

Well i have probably ALS. you cant say it for sure, just by time,but the symptoms are clear, im getting weaker and weaker and my muscles disappear. i just turned 34 and my life was good 1 year ago, had a lot of friends, went out, did a lot of sports.
it all started with shoulder problems, followed by muscle fibrilations, know i have problems with almost any joints, spine and sometimes swallowing
And because the docs said its your psyche my whole family believes in this. I get no physical help and i am isolated now.
Its cruel in both ways, physical and mentaly.
The future will be whellchair or maybe i suffocate before. Either way, thats not my life.
The fucking big problem is, i wasnt depressed before and i love life, but not this way. I would ve never come to my mind to ctb and thats what it makes so hard for me. I dont want to die, i dont want to ctb, but i dont want to be disabled , getting supported by everything even breathing, and be locked in my body, while my brain is working.
Its a fucking dilemma. Every outcome fucked up

@Elbarado - wow. i hear you. i see you. so not okay - any of it! and i get it because physical pain/illness leads to debilitating mental disease, far more often than not. i don't want to be kicked in my body either. what's the point?

I don't know if I have anything terminal but I am in constant pain all over the body. I have gastro and bowel issues. I have no answers for most of my pain and nobody wants to help me. Everyone says healthcare in the US is bad but here it really is shit. At least in my experience anyway. Yeah it's free but it's slow and inefficient. Lots of people are misdiagnosed. I got a gastroscopy and found out I had a haitus hernia. You know what I got for it? a leaflet explaining what it was. A fucking LEAFLET and told it's no big deal even though I told the doctor I could barely breathe. Zero aftercare. Unless they think you are literally dying you get no help. Unless something shows up on a scan your problem is not investigated any further. Case closed. Doesn't matter if you're in excruitating pain. If you had something serious going on it could spread throughout your body before you were able to see a doctor. I suspect I have nuerological problems. Have had them for years but my dumb GP has done nothing about it. I'm going to see if I can get a referral for a nuerologist. Something my GP should have figured out years ago but it's been up to me to research it myself. Guess how long the waiting list is for a nuerologist? 2 YEARS. Best healthcare in the world my ass. Sorry about my rant but it made me feel a little better...

@mediocre - that's awful, i'm sorry. in the us we wish for free healthcare. where you have free healthcare, it's eons to wait or get diagnosed only to bmto stay in constant pain and yes, receive a leaflet??? that's crazy. puts such a perspective on the system on a global scale. i'm sending you hugs and lots of love

 

[Lookingforhelp93]

Hi, I just read your story and I really feel for you. I got diagnosed with cancer a year ago and I am just really depressed now. I don't do things I used to love and I hate my life right now. I'm stage 4 and it will only be a matter of time before its terminal. No symptoms from the cancer right now, been going to chemotherapy each month to keep it at bay. Lost all my hair, self esteem is gone, no enjoyment in anything really. Been to a psychiatrist who specializes in cancer but it's really no help. Told them I'm suicidal and they just want to put me in the hospital, whats the point.. Anti-depressants just make me sleepy and hungry. I'm only 26 and I just want it all to end.

 

[Jean4]

Well i have probably ALS. you cant say it for sure, just by time,but the symptoms are clear, im getting weaker and weaker and my muscles disappear. i just turned 34 and my life was good 1 year ago, had a lot of friends, went out, did a lot of sports.
it all started with shoulder problems, followed by muscle fibrilations, know i have problems with almost any joints, spine and sometimes swallowing
And because the docs said its your psyche my whole family believes in this. I get no physical help and i am isolated now.
Its cruel in both ways, physical and mentaly.
The future will be whellchair or maybe i suffocate before. Either way, thats not my life.
The fucking big problem is, i wasnt depressed before and i love life, but not this way. I would ve never come to my mind to ctb and thats what it makes so hard for me. I dont want to die, i dont want to ctb, but i dont want to be disabled , getting supported by everything even breathing, and be locked in my body, while my brain is working.
Its a fucking dilemma. Every outcome fucked up

We are glad you are here. I have 9/11 related illnesses. The same will happen to me. We are here if you want to talk.

Hi, I just read your story and I really feel for you. I got diagnosed with cancer a year ago and I am just really depressed now. I don't do things I used to love and I hate my life right now. I'm stage 4 and it will only be a matter of time before its terminal. No symptoms from the cancer right now, been going to chemotherapy each month to keep it at bay. Lost all my hair, self esteem is gone, no enjoyment in anything really. Been to a psychiatrist who specializes in cancer but it's really no help. Told them I'm suicidal and they just want to put me in the hospital, whats the point.. Anti-depressants just make me sleepy and hungry. I'm only 26 and I just want it all to end.

Glad you are here. Have you joined any Cancer organizations? Did you get a wig? Talk to us. We understand.

 

[Motherfly]

Thank you. The sad thing is is that I'd rather have a physical disease than a mental one any day of the week

You have no idea what you are wishing for my friend

 

[Lookingforhelp93]

Glad you are here. Have you joined any Cancer organizations? Did you get a wig? Talk to us. We understand.

Hi, thank you for reading. No, I haven't joined any. I know there are a lot of resources there for young adults with cancer. I know how important it is to speak with people who have cancer at a young age, I just don't know if it'll help me since my situation is a bit unique. I don't really want to go into details but it doesn't matter, I'm just in a shit place right now and nothing will change that. No, I don't have a wig not even sure if they make realistic wigs for males but yeah I just wear a beanie and it works out since its the winter and I don't go anywhere lol.

 

[Jean4]

Hi, thank you for reading. No, I haven't joined any. I know there are a lot of resources there for young adults with cancer. I know how important it is to speak with people who have cancer at a young age, I just don't know if it'll help me since my situation is a bit unique. I don't really want to go into details but it doesn't matter, I'm just in a shit place right now and nothing will change that. No, I don't have a wig not even sure if they make realistic wigs for males but yeah I just wear a beanie and it works out since its the winter and I don't go anywhere lol.

You aren't as unique as me. I am a 9/11 First Responder. I have cancers and diseases they haven't seen before.

Yes. They do have realistic wigs for males.

I get you are in a bad place now. We all are. That's why we are here.

My suggestion is to get involved with a cancer organization. You may have a unique situation, but others can understand what you are going through.

You also have us. If you feel more comfortable over a computer, we are here, and we understand. Know you aren't alone. :)

 

[JustVisiting]

Hi, I just read your story and I really feel for you. I got diagnosed with cancer a year ago and I am just really depressed now. I don't do things I used to love and I hate my life right now. I'm stage 4 and it will only be a matter of time before its terminal. No symptoms from the cancer right now, been going to chemotherapy each month to keep it at bay. Lost all my hair, self esteem is gone, no enjoyment in anything really. Been to a psychiatrist who specializes in cancer but it's really no help. Told them I'm suicidal and they just want to put me in the hospital, whats the point.. Anti-depressants just make me sleepy and hungry. I'm only 26 and I just want it all to end.

@Lookingforhelp93 - completely understand. also know there are resources IF you want them. check out @thecancerpatient on IG. gives a serious AND a satirical outlook on having YA cancer. humor helps me stay sane. ❤

You aren't as unique as me. I am a 9/11 First Responder. I have cancers and diseases they haven't seen before.

Yes. They do have realistic wigs for males.

I get you are in a bad place now. We all are. That's why we are here.

My suggestion is to get involved with a cancer organization. You may have a unique situation, but others can understand what you are going through.

You also have us. If you feel more comfortable over a computer, we are here, and we understand. Know you aren't alone. :)

@Jean4, i've been seeing so much of the First Responder issues as of late. ugh. i'm sorry. also glad to know you ... even if only in this small slice of the world.

 

[Elbarado]

We are glad you are here. I have 9/11 related illnesses. The same will happen to me. We are here if you want to talk.

Glad you are here. Have you joined any Cancer organizations? Did you get a wig? Talk to us. We understand.

im sorry to hear that :( why do you have this cancer from 9/11? You said its a cancer the docs have never seen before, what kind is it? how do you bear with it?

sure i want to talk

 

[4eyebiped]

I have Crohns disease, no cure. Surgery, clinical trials, immunosuppressants, you name it I've had it or done it.

This info is for you and others with Crohn's and other bowel issues. If you haven't already, look into Butyrate. Long ago, I read some promising things about it, concerning this condition. I have not researched it beyond reading it in passing. Maybe there is something helpful there for you and others with similar issues.

 

[SpaceForGrace]

Hi. Joined last week. Just wanted to reach out and share my story as well. Thanks for taking the time to read.

https://sanctioned-suicide.net/threads/foraging-for-grace.30108/

 

[Nem]

Healthcare everywhere is a joke , in the USA they just throw pills at everything. Doctors only know how to cure things like broken bones.

The management of chronic conditions comes down to toxic medications to manage symptoms but never fix the root cause of the disease or reason the symptoms are there. Then in time those medications turn against the person and cause more "symptoms" which are really just side effects and toxicity from daily pill popping, so they prescribe more meds for those symptoms.

Our toxic and polluted world is making us sick, and Pharmecutical companies are not trying to cure anything, while doctors just believe whatever the pharma sales rep tell them and match symptom (X) with medication(X)

This is so true that it hurts! I made the horrific mistake of going back on meds and it destroyed my life and that's why I'm here. Holy shit do I ever regret taking meds!!!!!!!!
Peace/hugs

 

[Chronicillness]

Thank you. The sad thing is is that I'd rather have a physical disease than a mental one any day of the week

You say that but I think you remain blissfully unaware of how bad physical disease can get. Also, mental disease is usually a manifestation of neglected chronic inflammation, disease, etc.

This info is for you and others with Crohn's and other bowel issues. If you haven't already, look into Butyrate. Long ago, I read some promising things about it, concerning this condition. I have not researched it beyond reading it in passing. Maybe there is something helpful there for you and others with similar issues.

Just an FYI notice on butyrate: I just saw a studying that adminstering butyrate reduced butyrate producing bacteria. Commensal bacteria that produce butyrate are important as they aslo produce other SCFA's and bioactives that keep us healthy.

I think a DIY FMT transplant with a very happy non-diseased person could help though

Healthcare everywhere is a joke , in the USA they just throw pills at everything. Doctors only know how to cure things like broken bones.

The management of chronic conditions comes down to toxic medications to manage symptoms but never fix the root cause of the disease or reason the symptoms are there. Then in time those medications turn against the person and cause more "symptoms" which are really just side effects and toxicity from daily pill popping, so they prescribe more meds for those symptoms.

Our toxic and polluted world is making us sick, and Pharmecutical companies are not trying to cure anything, while doctors just believe whatever the pharma sales rep tell them and match symptom (X) with medication(X)

Medications do have a place in medicine, but they're often first line treatments that actually compound the problem in most people.

There's a whole armamentarium of medical theapies for diseases that are being completely neglected in the U.S. What's more is that you'll see "skeptic" journalists write poorly-researched hit-pieces that denigrate things like regenerative medicine (stem cells, exosomes, prp, etc.), acupuncture, fecal microbiota transplants, helminthic therapy, low dose naltrexone, and many other treatment modalities and instead strongly urge you to submit to your local GP and take pills that will make you sicker.

All insurance covered care is meant to make you sicker, which leads into the pockets of billion dollar corporations who then have an ability to manipulate politics in a way that minimizes what modalities are covered by insurance.. They're torturing americans and expect you to pay for more torture.

 

[BPD Barbie]

You say that but I think you remain blissfully unaware of how bad physical disease can get. Also, mental disease is usually a manifestation of neglected chronic inflammation, disease, etc.

I have Crohns disease, missing 25cm of my bowel, hashimotos disease, brittle asthma ;) I'm very well aware how bad physical disease can be, I've done clinical trials, taken cancer drugs, almost died on numerous occasions. I'm more than aware, but I'd still rather have sound mind and my diseases be active.

 

[squirtsoda]

Nothing terminal, but I have a neuroendocrine disorder called hyperadrenergic POTS affecting the autonomic nervous system and flooding my body with what are normally lethal levels of norepinephrine and other catecholamines in other people, so I'm always uncomfortable to say the least.
I see some of you have EDS, I know quite a few others in dysautonomia forums who have EDS comorbid with non neuroendocrine forms of POTS, seems pretty common.

 

[aloneintheworld]

I have dysautonomia too. I have full body CRPS, EDS, Fibro, and POTS and have many symptoms of MCAS.
I have dysautonomia too. I have full body CRPS, EDS, Fibro, and POTS and have many symptoms of MCAS.

 

[mr parkinson]

I have parkinsons