I feel guilty

9 Posts | Page(s): 1 

I feel guilty

by obiewon on Thu Apr 12, 2012 05:05 PM

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I have been looking for support. I do not have cancer. But I have been diagnosed with an in- curable spine disease. My brain stem is being affected and if they operate they say I will die. My doctors don't know how to help me. I'm not moving very much due to pain from where they put the feeding tube. I understand pain. It makes me tired and grumpy. Please don't think I am looking for pity. But a few weeks ago I was in pain crisis and went to the ER. The doctor was enraged no one would address my pain. They gave me morphine. I'm just trying to figure out how to get pain management. The pain is constant. I just need an ear and in return I'll listen too Lorrie

RE: I feel guilty

by MamaB on Thu Apr 12, 2012 05:50 PM

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Hi Lorrie,

I am so sorry you are having problems and in so much pain.

To be told you have something in-cureable is very devastating; I have been there.

It sounds to me like you need to go for a second opinion.

I do not understand the title of your post, "I feel guilty."  What does that have to do with the condition you are now in?

Are you a christian?  God is awesome, He is always there for us to go  to in prayer and just talk to, and tell Him of our troubles and pain and ask for His help.  Have you ask others to pray for you, and have you ask to be put on prayers lists at the churches?

Perhaps with a second opinion, the doctors will find out something they can do to eliminate some of your pain and keep you from needing so much pain medication.

Please stay strong in mind, body and soul.  It is very important that you keep a positive attitude, and have hope and faith for brighter days ahead.

Prayers and blessings,

B

RE: I feel guilty

by obiewon on Thu Apr 12, 2012 06:18 PM

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Yes I am catholic. I had 3 opinions and no one wants to operate so it is a waiting game. When my surgeon saw my MRI he left the room. Then my neurologist told me it was very bad and that I could die. If I had the surgery the chances of survival are next to nothing. I am trying to learn about palliatve care so that when I get into a pain crisis I have some help. The dr. At the ER had a fit when he found out no one would give me something for pain. Thank you for listening. ObieH

RE: I feel guilty

by MamaB on Thu Apr 12, 2012 07:08 PM

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I hope you can find someone that can help you.  It just sounds to me like you have some very uncouth doctors.

RE: I feel guilty

by obiewon on Thu Apr 12, 2012 08:30 PM

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I just stopped looking for help. Obie

RE: I feel guilty

by MamaB on Fri Apr 13, 2012 12:10 AM

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Obie,

I don't know how old you are, i don't know what it is or how long you have had this problem........and, I don't understand why you can't find someone to help you.

What I do know is :  You  have got to have a positive attitude to fight this thing .  Have hope and  faith .

How about getting a new project to work on , video game or etc........anything to help keep you from thinking of your troubles.

Take care Obie, and feel better really soon.

Prayers and blessings,

B                                                                                      

RE: I feel guilty

by obiewon on Fri Apr 13, 2012 01:25 AM

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Hi I'm 52 with cerebral palsy and a spine injury. I have lost all the muscle in my hands. My brain stem is being pressed on due to pressure from a defect in my spine. I used to teach, but now I am un able to work. Everything I used to do I had to use my hands. I TRY anything when I feel good. But after the last surgery things deteriorated. My surgeon will not operate because the risk of mortality is too high. I bought an I pad because it's easier than my computer. I think I am mourning my old self. BUT I do know this issue began right after they took out my feeding tube in 2007. I apologize for venting. These aren't troubles. I can handle trouble but pain 24 hours a day is too much I have seen all my doctors and none of them will help. I was in physical therapy last year and after 3 months they dismissed me. Obie

RE: I feel guilty

by MamaB on Fri Apr 13, 2012 03:05 AM

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Obie,

Do you have any family?  You need a patient advocate!     Someone, somewhere should be able to intervene between you and the doctors.  It is inhuman to let people suffer!

I have had nine back surgeries; right now, I have ice on my back to help with the pain.  I was diagnosed with Stage IV, RCC with mets to the lungs in 2007.  God intervened in my case and I was able to have surgery two and a half years later; I have not had anymore chemo since the month before my surgery.  I feel very blessed.  I go next month for lab work and scans; I pray everything will be clear.  I have been off of chemo for a little over two years.

Don't apologize for venting.  I do hope you find someone to help you soon.

I will remember you in prayer.

Blessings,

B

RE: I feel guilty

by obiewon on Fri Apr 13, 2012 07:36 PM

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Hi I live with my mom. I have 2 older sisters. I'm not too sure how to get a patient advocate. I agree it is inhuman to let people suffer. I think in my case they would rather not talk about it. Just like you I have had about 10 back surgeries plus a fusion in 2005. That surgery was indeed a God-send. But then issues came up with my neck a year later. So the operated again. Right now I'm trying to cope with chronic pain and issues that seem to have risen after a feeding tube was removed. I think my doctor believes I have scar tissue wrapping around the surgical site. But they tell me nothing can be done. I was in th hospital a few weeks ago for pain meds. It felt so good to just sleep. The dr. Wants me on some type of pain control. But we haven't come to a conclusion yet as to what that is Thank you for your message. Obie
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