neuro visit

[cukita99]

well just got back from neuro visit. he wants me to get a suction machine, bipap and think about peg. i have no insurance and no money. i talk to father trini from my church and he said if i dont get a peg its like taking my life. now im so confuse. wish my family would b more supportive. my son can only do so much.

 

[indigosd]

ohhhh...what can we do? Are you connected to a local ALSA? Can you qualify for Medicaid? hugs, hugs, hugs. Personally, I am very angry that Father Trini would tell you that if you do not have a PEG that it is like taking your life. IT IS NOT! Do not believe him. more hugs for you

 

[cukita99]

no ALSA here. dont qualify for medicaid.

 

[vw-fl]

Please contact Stu at ALS Guardian Angels. He may be able to help. w. alsguardianangels dot com

 

[Blubear]

Oh Lupe, it is so good to hear from you again! Now, listen, tell Father Trini that there are actually two sides to that argument. If it is his belief that God should be in control over "when" you die and not you, then are you not slapping God's face by prolonging your life with man made devices as well? It is not suicide hun. Not by letting the course of nature take place without man made things to keep you alive. This decision is not like physician asst. suicide. You merely want nature to take its course. Do I want you to get the peg...um ya, but I WANT you around here longer....we love ya! No decision here will be easy hun. I know your financial situation, and if you do decide to get the peg, do contact Stu. But whatever your decision, we will stand behind you 100%!
Hugs ALWAYS!
Kari

 

[irismarie]

Dear Cukita,
the messages posted say it loud and clear.
Tell your Rev that he is WRONG. Kari has put the argument so well.
And if he is so convinced, let him pay to help you out of the quandary he has put you in.........;;

Sending you much love.
Forget people who could help and don't. They are not worth a single tear

 

[indigosd]

Lupe, irismarie nailed it on the head! Give me Father Trini's phone number and I will call him for you. I am serious! The Catholic Church and the Mormon's are two of the wealthiest churches in the WORLD. I think the Catholic church would be SOUL happy to assist you with abiding by their Life is SACRED philosophy. Please send me his phone number and let me help you. I don't know what Stu/ALSGA could do for you financially as those are huge amounts of money. SEND ME HIS NUMBER! xoxox

 

[CAHPAH]

Lupe
I don't know of a more sencere Christian woman then my wife. Her faith in Jesus gives her the strength to do what she does every day in fighting this stupid disease yet her decision is to not have a PEG. I believe Father Trini is wrong here. By deciding not to have a PEG you are in no way devaluing the life that God has given you.

Jim

 

[indigosd]

Lupe darling, I have sent the Monkey's. Hold on and know that we are lifting you up, surrounding you with light, love and prayers! MIRACLES do happen. xo Kay Marie

 

[cukita99]

this is what he said. """" Therefore to accept a feeding tube is very necessary. If we don't we are deciding when life is over and not God." and i guess i will Make my own mind what is best for me. thanks forr been here for me.

 

[irismarie]

That makes me so cross! It is so illogical and so unfair on you. If you HAVE to think in his way, then HAVING the peg is "deciding when life is over and not God".

I bet if you went to another priest you'd get a different answer.

So sorry that person has put you in this quandary, Cukita.
Much love and courage to you

 

[olly]

dear cukita,i am so sorry to hear the time has come for you to need more life prolonging measures.
i agree with kari and everyone else,a few years ago this exact thing happened to someone else on the forum. they were told by a "father"who visited that it was wrong not to except life prolonging treatment..............there was a few who agreed with this but i for one did not.
i spoke to an elder at my church and he said the same as kari,these things are just manmade and not to except treatment if an person is terminal is not suicide.
but we do care so much about you and your son,we want you to keep going for as long as you can........most importantly we want whats best for you,only you can make the descision.
i will keep you in my prayers.

 

[brooksea]

I wonder, Lupe, what has Father Trini actually done to help you and your family. I know the ALSA hasn't helped, so what's left? A priest that even makes your life more difficult by spewing such nonsense! God would happily welcome you into his arms and find no fault with your decision, whatever it may be.

You would think he and "the church" would be looking for resources to help you and your son, rather than judging you. Ask him to "walk" in your shoes.

ARGH!

 

[handinhand]

oh Lupe, It is sad that he said those words to you. I know we can think that a priest can say no wrong. This is just soooooooooooo out of line.. I agree totally with what Carolyn said.. Make the decision based on what you want and you only.. Big Hugs, Linda

 

[Phil M]

Hi Lupe! Priest are not always right. I was raised Baptist. I go to a church that has one of the most popular preachers in the world. He said whenever someone is struck with a life crisis. That it is God punishing you for something bad that you did. That just crushed my heart! I have never been a thief, I have never been a liar, and have never harmed anyone. I think I have lived better than most. Now I have a hard time going to that church. I can't confront the preacher because he is too much of a bigshot to talk to normal folks! Try to tackle one thing at a time, and don't overwhelm yourself. The peg is pretty important for your comfort. Try if thats what you want. Thats all you can do. Let us know if we can help.