I wish I were healthy

[Wrennie]

My family is trying so desperately to help me but no doctors will cooperate
They take forever to get back to us or meet with us for follow-up appointments
I just wish I were healthy so I could live happily alongside the people I love
I can't go to a psych ward for my mental health shit because I have severe PTSD from the other times and I'm in too much physical agony now (the beds there are rock hard too)
They'll try to drug me even though I'm severely allergic to 99% of psych meds
My new neurologist won't give me the amount of IVIG I need
My parents fought so hard with insurance to just get it prescribed in the first place
I feel like my veins are on fire 24/7
I've been to the ER twice (once via private ambulance) for my nervous system dysfunction and they tell me there's nothing they can do
That I just have to learn to "live with it"
They won't even give me a decent amount of pain meds (I only got like six oxy)
It's not like my family can afford to keep repeatedly taking me there in America (and even if they could the doctors won't help us)
Life is so unbearably hard when you're in this much physical agony
I'm anorexic because I'm in so much pain that it's hard to eat & my family is trying to help feed me as much food as they can and help me to put back on pounds, but it hurts my stomach so much that sometimes I can't even stand up straight.
If I go to a re-feeding clinic they'll just force-feed me until my stomach ruptures.
I just want my body to work again, but now I'm going blind.
I think it's the titanium in my leg that's doing this, but I'm probably too weak to have it surgically removed.
We're trying to schedule appointments with doctors but they make us wait an ETERNITY to meet with them, and by the time they see us I've already degraded to a point where they can't realistically help me.

And people wonder why I have suicidal thoughts
It's physical sickness and the abuse from medical and mental health facilities & faulty psychiatric treatments that drove me to this
If not for that, I could still be living happily alongside my precious loved ones

Therapy was making things worse because I knew that my therapists, as kind as they were, could never comprehend what it was like to live this way
It just made me feel more isolated and alone if anything (not that that was their intention, but it's what happened)

Why is it acceptable for this country to subject people to so much torture?
If they can't help me, why can't I be granted the option of a peaceful exit?
It's not like I want to leave, but I'm just so physically ill
I'm fighting so hard. My family is fighting so hard to save me. All of our pleas for help are just dismissed and ignored by doctors.

My family won't take me to Pegasos because it would break their hearts & also we couldn't afford it even if it were possible
I just feel so cornered

 

[FuneralCry]

It is very horrible what you have to go through. No one should have to go through that. It is cruel how the society expects people to suffer for decades. I'm sorry that things are this bad. It can be awful being trapped in this human body as it is capable of torturing us. I hope you find peace.

 

[Midgardsorm]

I'm completely out of words, Wrennie.

The first time I've seen you post about your situation I had to stop reading for w moment because I started feeling really bad. I still remember that day.

You've even spoke more of it, this world were completely unjust with you. Sadistic if anything.

As ever. The doctors fails to ease our pain. Fails to fix our bodies and yet get paid huge amounts of money.
We really need a reformulation on the medical field.


I can sympathize with your parents for not wanting to take you to Pegasos, but doesn't break their hearts to see you like this too?
The pain is one of the worse things ever. Why people are so indifferent with pain today?

Your suffering needs to end, Wrennie. You're very kind and lovely.

I will be thinking of you.

 

[healthrecovery]

 

[rationaltake]

I am so sorry you are in this awful situation and are suffering so much. Life is so unfair. Sending you virtual hugs.

 

[KuriGohan&Kamehameha]

You are a very sweet and kind person who has been dealt a horrible hand, Wrennie. You don't deserve any of what is happening to you right now. I've watched you endure tragedy after tragedy as long as I have been a member, and it's so heartbreaking to watch this world fail you time and time again.

It is awful that these doctors got your hopes up by reccomending this treatment, only to snatch away any hope of relief you had by tacking on a massive price tag. If they weren't willing to find organisations that could help cover the costs, or couldn't find an alternative for a lower price, they shouldn't have ever gotten you started on the drug, as they had fully knowledge at that point that it could be yanked away from you.

Making pain reduction contingent on finances is sick. If someone is in such intense suffering that they find themselves at death's door, these doctors should be scrambling to do anything to help them. Instead, what are they doing? Delaying conversations and acting nonchalant. As far as I'm concerned, this is not healthcare. This is a for profit business taking advantage of the ailing.

It's like offering a meal to a homeless man and giving him a taste of nourishment, only to seize the plate from him when he inevitably can't pay for the help. It is really horrible that something like this is allowed to happen, especially to someone like you who has already been forced to endure so much suffering.

I'm sorry your parents are unwilling to have difficult conversations about this. I know they care about you deeply, but like Midguardstorm said, but at some point they will need to acknowledge how you are feeling too. It's a decision no one should have to ever contemplate.

 

[nautilus]

Hi Wrennie. My heart goes out to you. Not least, because our situations are so similar. All my vei s burn... lyme... and im full of titanium due to me loosing my grip and jumping.

 

[Suicidebydeath]

I feel really bad for you. Nobody should have to suffer like this. It isn't acceptable at all.

I'm sorry Wrennie.

 

[dropintheocean]

Im so sorry Wrennie! I pray it gets better for you! Im in the simular situation.

 

[Versailles]

I'm sorry to read this, you are one of the people that I appreciate the most here, and I hope that you can find a quick way out of your situation, I am afraid that your only option to convince your parents may be eloquence, and achieve what you want Unfortunately there are very few medical institutions that understand the patient's decision in this regard, I hope things go well for you.

 

[GentleJerk]

I can't find the words to tell you how much I wish you never experienced any of this, you deserve so much better. I think that its almost impossible for most people to truly understand the real impact that this sort of suffering has, unless they have experienced it themselves.

The systems in place consistently fail people in such a profound way, especially those who are most vulnerable, that anybody with even the slightest compassion for others should be infuriated.

The way that money and the world's economy works is like a game of musical chairs- there isnt enough for everyone and when the music stops, someone is always left out. Important progress such as medical advancements are always painstakingly slow, and access to medical care often unaffordable. In my country, due to budget shortages the government takes money away from welfare and disability sectors to inject it into other things such as military spending and mining. Things have to change.

I might make my own thread about what I believe everyone can do to help fix these problems because it doesn't belong here on your thread, when you probably just need to say how you feel, people to hear what you are saying, and offer you any support they can. If there is anything that you can think of that people here can do to help you in any way, please don't hesitate to say.

Finally, I agree with @JustJudah don't be discouraged when others do not accept/understand your feelings in regard to dying and suicide. If you believe something is in your best interests then don't give up. I wish you all the luck and success in the world.

 

[clown_17]

I'm sorry you're in such suffering. It's true, the therapists never get it. If they did there's no way they'd be ever able to show up to work again. It's a shame that the things made to help: psych wards, medical treatments, meds. Can create the problems in the first place. I wish you peace

 

[stupidlife666]

My family is trying so desperately to help me but no doctors will cooperate
They take forever to get back to us or meet with us for follow-up appointments
I just wish I were healthy so I could live happily alongside the people I love
I can't go to a psych ward for my mental health shit because I have severe PTSD from the other times and I'm in too much physical agony now (the beds there are rock hard too)
They'll try to drug me even though I'm severely allergic to 99% of psych meds
My new neurologist won't give me the amount of IVIG I need
My parents fought so hard with insurance to just get it prescribed in the first place
I feel like my veins are on fire 24/7
I've been to the ER twice (once via private ambulance) for my nervous system dysfunction and they tell me there's nothing they can do
That I just have to learn to "live with it"
They won't even give me a decent amount of pain meds (I only got like six oxy)
It's not like my family can afford to keep repeatedly taking me there in America (and even if they could the doctors won't help us)
Life is so unbearably hard when you're in this much physical agony
I'm anorexic because I'm in so much pain that it's hard to eat & my family is trying to help feed me as much food as they can and help me to put back on pounds, but it hurts my stomach so much that sometimes I can't even stand up straight.
If I go to a re-feeding clinic they'll just force-feed me until my stomach ruptures.
I just want my body to work again, but now I'm going blind.
I think it's the titanium in my leg that's doing this, but I'm probably too weak to have it surgically removed.
We're trying to schedule appointments with doctors but they make us wait an ETERNITY to meet with them, and by the time they see us I've already degraded to a point where they can't realistically help me.

And people wonder why I have suicidal thoughts
It's physical sickness and the abuse from medical and mental health facilities & faulty psychiatric treatments that drove me to this
If not for that, I could still be living happily alongside my precious loved ones

Therapy was making things worse because I knew that my therapists, as kind as they were, could never comprehend what it was like to live this way
It just made me feel more isolated and alone if anything (not that that was their intention, but it's what happened)

Why is it acceptable for this country to subject people to so much torture?
If they can't help me, why can't I be granted the option of a peaceful exit?
It's not like I want to leave, but I'm just so physically ill
I'm fighting so hard. My family is fighting so hard to save me. All of our pleas for help are just dismissed and ignored by doctors.

My family won't take me to Pegasos because it would break their hearts & also we couldn't afford it even if it were possible
I just feel so cornered

At the end of the day wrennie it's all about genes and you drew the short straw

 

[Sherri]

My family is trying so desperately to help me but no doctors will cooperate
They take forever to get back to us or meet with us for follow-up appointments
I just wish I were healthy so I could live happily alongside the people I love
I can't go to a psych ward for my mental health shit because I have severe PTSD from the other times and I'm in too much physical agony now (the beds there are rock hard too)
They'll try to drug me even though I'm severely allergic to 99% of psych meds
My new neurologist won't give me the amount of IVIG I need
My parents fought so hard with insurance to just get it prescribed in the first place
I feel like my veins are on fire 24/7
I've been to the ER twice (once via private ambulance) for my nervous system dysfunction and they tell me there's nothing they can do
That I just have to learn to "live with it"
They won't even give me a decent amount of pain meds (I only got like six oxy)
It's not like my family can afford to keep repeatedly taking me there in America (and even if they could the doctors won't help us)
Life is so unbearably hard when you're in this much physical agony
I'm anorexic because I'm in so much pain that it's hard to eat & my family is trying to help feed me as much food as they can and help me to put back on pounds, but it hurts my stomach so much that sometimes I can't even stand up straight.
If I go to a re-feeding clinic they'll just force-feed me until my stomach ruptures.
I just want my body to work again, but now I'm going blind.
I think it's the titanium in my leg that's doing this, but I'm probably too weak to have it surgically removed.
We're trying to schedule appointments with doctors but they make us wait an ETERNITY to meet with them, and by the time they see us I've already degraded to a point where they can't realistically help me.

And people wonder why I have suicidal thoughts
It's physical sickness and the abuse from medical and mental health facilities & faulty psychiatric treatments that drove me to this
If not for that, I could still be living happily alongside my precious loved ones

Therapy was making things worse because I knew that my therapists, as kind as they were, could never comprehend what it was like to live this way
It just made me feel more isolated and alone if anything (not that that was their intention, but it's what happened)

Why is it acceptable for this country to subject people to so much torture?
If they can't help me, why can't I be granted the option of a peaceful exit?
It's not like I want to leave, but I'm just so physically ill
I'm fighting so hard. My family is fighting so hard to save me. All of our pleas for help are just dismissed and ignored by doctors.

My family won't take me to Pegasos because it would break their hearts & also we couldn't afford it even if it were possible
I just feel so cornered

@Wrennie i would love to send you a Pm to chat with you a bit, but you Can And If you willing ,please Pm me. Sorry for all your pain. Just trying to help.

 

[GentleJerk]

Unbelievable. Someone delete @stupidlife666 's comment please, hopefully before Wrennie logs on and sees it.

 

[Suicidebydeath]

*comment*

I was waiting for someone else to reply to confirm, but this could be construed as insensitive to the OP. Please edit.

@GentleSoul, might be best to edit the quote out as well for the best case. Since quotes remain after a post has been moderated / edited.

 

[stupidlife666]

Unbelievable. Someone delete this comment and boot this guy please, hopefully before Wrennie logs on and sees it

Tried to but it says ereor

At the end of the day wrennie it's all about genes and you drew the short straw

 

[GentleJerk]

I was waiting for someone else to reply to confirm, but this could be construed as insensitive to the OP. Please edit.

@GentleSoul, might be best to edit the quote out as well for the best case. Since quotes remain after a post has been moderated / edited.

Thanks for the heads up.

There's no interpreting that comment as anything but a pointless, nasty and insensitive insult.

 

[Wrennie]

Tried to but it says ereor

Well, he did make a decent point.
But if I'm genetically inferior and only being made to suffer because of it, isn't that more reason why a peaceful exit should be made accessible for the chronically ill?
Otherwise, it's just pointless & unending suffering. If enough doctors tell you that there's nothing that can be done, & if you're all out of options, isn't it rational to want to leave?