Cirrhosis Questions (long)

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4boys4me
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Date Joined Jan 2008
Total Posts : 10
   Posted 1/7/2008 7:51 PM (GMT -7)   
Hi, I am new to the forum.  Sorry if this is long, but I wanted to make sure it wasn't confusing.  This forum seems very helpful.  It's hard to find anyone who can understand.
 
My dad has cirrhosis (ESLD) and has been having severe complications as a result.  He is going to be 68 this year.  Most recently he suffered a seizure and was taken by ambulance to the hospital.  This was on Christmas Eve (12/24/07).  He was admitted to the ICU with acute liver failure and was in a coma.  The doctors said that he would either come out of it or not.  Suprisingly to us he did come out of it on 12/26/07.  He stayed in the hospital until New Year's Eve and was sent home.
 
He is very confused again and my mom is extremely stressed out because he keeps leaving taps running, elements on, tries to go out on his own (driving/shopping), is difficult to understand when he speaks, sleeps almost all of the time, is confused, has a hard time getting to the washroom, has very bad shaking/tremors, etc.  She feels like she can't sleep due to fear of what he is doing.
 
He seemed like he was getting better when he was in the hospital, but now it's starting to seem like he is going to end up in a coma again.  All the fluid is coming back into the abdomin and the other symptoms keep getting worse.  He is very uncooperative and just wants to sleep.
 
He has a hernia that he needs to have operated on, but he can barely walk from the bedroom to the bathroom, let alone getting him out to see a doctor.  To make things even more complicated they (mom & dad) are moving in 3 weeks, and we don't know how dad is going to be able to travel.
 
From what I have read (on here and elsewhere) it is hard to know what is going to happen next.  He was recommended for a transplant back in October, but for some reason the hospital never received his info.  The specialist has put an urgent request through again and we should here back within a week, but they are moving to our (my husband and I) area, which is 5 hours away from the transplant hospital, so we don't know how dad will even make it down there for all the testing and assessments.  We live in a suburb of the city, but they do not do liver transplants here. 
 
Does anyone know if there can be improvement when things are this bad?  We just don't know what to expect at this point.  We are prepared for the worst, but very unsure.  We want to be hopeful.  Our boys adore my dad, so it is hard for them to understand that he is very sick.  They are only 6, 5, 19 months, and 9 months.
 
Thanks in advance for your replies.
 
 

Butterflythree
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   Posted 1/7/2008 9:41 PM (GMT -7)   
Hi4boys4me, Welcome to the forum. I am so sorry hear that your dad is so sick. It sounds like he will be needing a liver transplant as soon as possible. Is he taking Lactulose? That can help with the confusion. It is usually caused by ammonia build up. If I were you I would do everything possible to make sure he makes it for the testing and assessments for the liver transplant. I hope that everything works out for your family. You will be in my prayers.
Butterflythree
 
There is always hope!


4boys4me
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Date Joined Jan 2008
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   Posted 1/8/2008 9:57 AM (GMT -7)   
Hi,

Yes he takes Lactulose, but only takes 2 tbsp a day. My mom tried to get him to take more, but he refuses. I think the personality changes are the hardest for all of us. The doctor said that if he goes back into acute liver failure that he will not be eligible for a transplant at that point.

Thanks for your reply.

CaryF
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Date Joined Nov 2007
Total Posts : 505
   Posted 1/8/2008 10:19 AM (GMT -7)   
Hi,

The only thing I can think of is to increase lactulose. I'm sorry your father is so ill and uncooperative. If it were my Dad I'd ensure he is on that transplant list, makes all assesment appts. & know that this is very serious (I would think his age is also a factor for being rejected) and ensure his things are in order.

I am not telling you what to do - just my opinion. Best of luck

ggirl
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Date Joined Jan 2008
Total Posts : 13
   Posted 1/8/2008 11:51 AM (GMT -7)   
sad  to 4boys4me,
 
Hello, I am new to this forum, I found it by looking things up on my husband to try and help him.  I am not sure what to do either.  In September of 2004 my husband was diagnosed with alcoholic liver disease, was told he wouldn't live past 50 if he didn't stop drinking, he hasn't stopped. In the past 3 years it has gotten so bad and he doesn't even realize it, he hasn't even gone back to the doctors.  His abdomen is so enlarged, he shakes all the time is jaundice and his nervous system is out of wack.  He tells me he isn't in any pain but I don't believe that.  I don't know how to get him to go to the doctors before it is to late.  I believe he is in the end stages of liver disease, since christmas I have noticed that he forgets a lot and his mood swings are horrible, he doesn't eat much at all and even if he hasn't had alcohol he acts like he has. Is there any advice on what I can do to help or is this just a sit and wait. Ggirl 

1Shelly1
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Date Joined Oct 2007
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   Posted 1/8/2008 2:01 PM (GMT -7)   

4boys4me, first let me say welcome to the forum and add how sorry I am about your dad. I went thru the same problems with my mom last year. She passed away on Nov 13,2007. My mom's condition deteriorated very quickly and it was like a nightmare for the whole family. She too left the faucets turned on, food cooking on the stove, and was very forgetful in general. She had horrific mood swings, and slept mosrt of the time. She was never a candidate for a transplant however. Like the others who have answered you I would do everything possible to  keep all appts etc. Stay strong and always have hope. Just know that we are all here for you.

 Ggirl, Welcome to the forum. I can only imagine how frustrated you must feel. Unfortunately you can't make your husband do anything. He has to want to stop drinking and from what you said he has not made that decision yet. Quite often alcoholics stay in denial about their health issues so they continue to drink. I don't mean to sound cruel or anything but are all his legal papers in order? (wills, life insurance policies, etc.)You don't have to answer that question publicly but you do need to take care of those things for your sake. You'll find that this forum is an excellent resource for information as well as an extremely compassionate group of people. The folks that post on this site are very educated about liver disease and will be able to answer most of your questions. You'll find that if they don't have an answer they can direct you to internet sites that do. Stay strong and know that we are here for you even if it's just to vent.

      Shelly


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 1/8/2008 4:42 PM (GMT -7)   
Hi 4boys4me, My husband doesn't like taking the lactulose either. I just recently got him to take more of it and it has really helped. I have been told that it can be put in juice or other things to make it more bareable. I do agree with you that the personality changes are really hard to deal with. Sometimes (most of the time), I miss my husband so badly that I can hardly bare it. Then just out of the blue he will be himself for a few days. I am hoping to be able to pin point the difference so that I can have more of those days.

Hello Ggirl and welcome to the forum. I am glad that you found us. I am so sorry to hear that your husband is doing so badly. You describe your husband as acting like he has been drinking even when he has not. That is most likely the ammonia levels in his body. My husband gets that way a great deal of the time. I know how lonely and upsetting it can be. My heart goes out to you. I wish I could give you advice on how to get him to go to the doctor. Just know that we are here and you will be in my prayers.
Butterflythree
 
There is always hope!


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 1/9/2008 3:10 AM (GMT -7)   
Today I started my morning with 4 T this evening 3 T. How much more can we take .
ggirl : Sorry to hear about your husband. I heard that if he is still drinking they will not do a transplant because he will ruin it. I had to stop taking my anxiety , The psyc. told me it was adictive. I'v been on it for years it's very difficult to stop something you have done for years just like that.
4boysforme : Hope you can get your dad to take more. use it in his cereal, oatmeal , fruit juice tea. Mine does not have a flavor it just tastes like corn syrup.
My ammonia levels in Dec.06 were 186. I was hospitalized becaust I was sort of in a black hole. This Dec.07it was less than 14. L(14--49 ) I think,

Today I was very light headed. I forgot 2 sacks of I had purchased at the store and got home with dog food and cookies. So my husband had to drive me to the store and they had put them back on shelves . So I had to shop for the things I had paid for again. I don't quite understand how o;ur brains will be bac to normal after the transplant. Good luck to all

ggirl
New Member


Date Joined Jan 2008
Total Posts : 13
   Posted 1/9/2008 6:42 AM (GMT -7)   

Butterflythree, 1Shelly1 and June 17th,

Thank you all for welcoming me and your responses.  Your right it is very frustrating especially since we haven't lived in the same house for 3 years (or state), we stay married and love eachother very much.  He takes care of me and our 3 boys very well financially, but he is not there emotionally, we only get to see him every 2 month because of his job and we are so far away.  But everytime it gets worse.  We have had him in in-patient, out patient and 1/2 way houses.  He says they don't work for him, that he is wants to quit but is scared to go through the withdrawl part.  I know it has to be very hard since this has been going on for years, I guess I just don't understand why he would keep doing it knowing he is so sick and is killing himself.  He has made sure all of his papers are in order, etc., but that just seems to make it harder in a way.  Our 12 yr old son was diagnosed with non-alcoholic liver disease (NASH) in november, and the doctors r just getting started on trying to find out the cause of that, but now he gains weight constantly and they said his liver is starting to harden.  To be hones if I never heard of liver disease it bother me at all, I have place everything in Gods hands and pray constantly I just wish I could get that one miracle for my husband and family.  Sorry this is so long, thank you for your compassion and careing.  Bless you all and I will keep you in my prayers.  ggirl


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/9/2008 4:18 PM (GMT -7)   

Ggirl, as a sober alcoholic (21+ years in AA), I have to address what your husband had to say about treatment.  First of all, he needs to go to a detox facility.  They do give them some kind of medication so he won't have DTs.  Next, he needs to know that he CAN get and stay sober...he has to want it more than he wants to drink.  AA DOES "work if you work it."  In other words, it won't work for him if he just sits there and tunes out.  He needs to go every day for the first 30 days, and then every day that he possibly can.  He will need to read the Big Book of AA, get a sponsor, do the 12 Steps and daily meditations and gratitude lists.  Those are the things that make it work...that and sharing and helping others.

He would need to go to AA and be sober for 6 mos. before becoming eligible for a transplant.  I am really thankful that I had been sober for 6 years when I was first diagnosed with hep C.  It was still difficult to deal with--just the idea of it.  It came at a time when I was in a new marriage, a fairly new career that I really loved, and life was going so well.  I went through all the stages of grieving, but did so fairly quickly, thanks to AA.

Ggirl, I hope your son gets the treatment he needs and will get better.

Hugs and best wishes to all,

Connie


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 1/9/2008 7:11 PM (GMT -7)   
Ggirl, I know how you feel. When my husband was diagnosed with hep C in 1994 I couldn't understand why he continued to drink when he knew that it would shorten his life. I begged, pleaded, and cried but it didn't matter. He continued to drink until he was diagnosed with cirrhosis in July 2006.
Although he has been sober, he is rarely ever himself these days. I really miss him.

I am so sorry that your son is also sick with liver disease. I have a 13 year old daughter, and I don't know what I would do if she was also sick. You are having to deal with so much right now. I hope you will try to take care of yourself. I know that is easier said than done. Most of the time these days I feel like I am going to come right out of my skin.

I will pray that the doctor's find the cause of your son's illness and he gets better soon.
Butterflythree
 
There is always hope!


Butterflythree
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Date Joined Oct 2007
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   Posted 1/9/2008 7:16 PM (GMT -7)   

June,  Don't feel bad about forgetting your groceries at the store.  I did that a few months ago, and it was more than a couple bags.  And I don't even have liver disease. tongue    I was lucky though.  I got back to the store before it was put back on the shelves.  Sometimes we are just so preoccupied with other things that we forget what we are doing at the moment.

Take care!


Butterflythree
 
There is always hope!


ggirl
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Date Joined Jan 2008
Total Posts : 13
   Posted 1/10/2008 7:22 AM (GMT -7)   
eyes  Butterflythree,
     I can relate a lot to what you are saying about missing your husband, mine isn't the same man either.  I do miss him so much and I tell him so often, which might not be good.  Last night I was talking to my 16yr old about his father and when he was here for Christmas, he looked at me and said " Dad wasn't really dad this year, he always loves Christmas and didn't seem to really want it this year."  It was so sad to hear from my son, more because he is right; my husband never could wait for the holidays to come he was always like a little boy in a candy shop and thrilled to decorate the house and buy new decorations.  I do feel like I am going to crawl out of my skin at times but I do manage to take care of myself and find time for myself even if it is at 1:00am in the morning.  Thank you for your prayers for my youngest son, I know through all of this (my husband, my boys, all of it) God is with us and by the grace of God I have made it through with out literally being put in the funny farm.  But, if it ever does come to that I made my mom promise that she would make sure I get a padded room with bright orange and pink daisies on the walls. (Ha-Ha)
 
Take care and God Bless, ggirl

ggirl
New Member


Date Joined Jan 2008
Total Posts : 13
   Posted 1/10/2008 7:39 AM (GMT -7)   
eyes  hep93
     Hello thank you for your response and congratulations on your years of sobriety.  My husband did have a sponser at one time, actually he was a neighbor that we had known for years and knew that he was having problems before he became sober.  But, my husband only lasted with that about 3 months.  The last place he tried was a 1/2 way house in 2005 which I thought he was doing awesome, but 3 months later he was kicked out and just 2 months ago I found out that he was drinking there most of the time.  I asked him how since they do UA's everyday and his response was - " An Alcoholic will find any way to drink and get away with it." You see he is a closet alcoholic in a since, let me explain a little... His friends, family, co-workers know that he drinks at dinner or on occassion, but they do not know about the bottles hiding in the trunk of the car, under the mattress, etc.  He tells me its kind of a pridefull, shamefull thing with him.  He doesn't want anyone to know how much he is drinking.  His family actually thinks I'm crazy and there is nothing wrong with their brother which makes it worse since he works and lives in the same town with them.  He always says he will be transferring and coming home soon and then he will be in his benging stage and say "what if it doesn't work and I give him an altimatum again".  I have tried everything from enabling (not meaning to of course) to tough love.  I know he won't get help until he is ready my fear is it will only be when it's too late that he will get help because he will not have a choice.  I hate the thought of seeing him go through such pain and illness, yeah I know I have heard the saying he has done this to himself but, I don't believe any person really chooses for this or any other addiction to take their lives over. When he went back for Christmas I put his AA book in his bag along with his daily devotional I really hope he takes the time to open them up.  Thank you a lot for the response once again, it is always nice to hear from someone who has been on the same side as my husband.  Take care and God Bless, ggirl

ggirl
New Member


Date Joined Jan 2008
Total Posts : 13
   Posted 1/10/2008 8:19 AM (GMT -7)   

confused  hep93,

     Hello it's ggirl again, I was just thinking that maybe you could give me a little insight on some things going on with my husband.  As I mentioned before I only get to see my husband every 2 months (5-6 days at a time), but the last couple times I have noticed that he is constantly sweating, shaking and when he sleeps it is almost like he is having some kind of nerve attack, he jerks around a lot in his sleep and moans often like he is in servere pain.  He says he isn't but I can't see how that is possible.  I am so worried about him, he admits he is a severe alcoholic but denies he is seriously sick with liver disease and just down right refuses to go to the doctor until he is in a lot of pain.  I have read so much on symptoms and stages of liver disease I am going nuts, I'm not sure if he even has alcoholic hep.  He works in the oil field service and is a truck driver, he's terrified if he goes to the doctor that he will have his CDL pulled and loose his job.  He stays sober when he is on a job, says its because he has no choice (the job could last for 3 days) but when he gets back in he can't wait to have a drink.  Are these symptoms just going to get worse, we are so far away from him I fear anything could happen.  ggirl


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2008 4:49 PM (GMT -7)   

Ggirl, thank you for your kind words.  As for your last post, it's hard to say what is going on with your husband's symptoms.  My first thought would be that he's going through some withdrawal if he is not drinking the amount that he normally drinks.  However, it could be symptoms of worsening liver disease.  I'm not a doctor, so I'm just guessing here.  It sounds like he is a "functional drunk," able to hold a job and fool most people regarding the amount he drinks.  I was never like that, but my ex-b.f. was.  I think it's harder for those people to admit complete defeat and seek help.  Same for "periodics."  Those are people who binge for a week or two and then sober up for anywhere from weeks to months.  My grandfather was a periodic.  I, on the other hand, was a drink-everyday alkie.  I had a hard time holding onto jobs because of lateness and absenteeism (hangovers, bruises and broken eyeglasses from falls, you name it.)  Even still, when I first got to AA, I just thought they would help me with my "emotional problems."  I didn't accept right away that I was alcoholic and that my problems were a result of drinking....or made them worse...and that I would have to give it up.  For the first 4 mos., I would stay sober during the week and go to meetings, but drink on weekends.  I only stopped when I was no longer getting anything from it...it did not even put me to sleep...yet I had a hangover and felt awful.

With your husband not wanting to go to a doctor, I'm sorry to say that there's not much that can be done to help him.  I think you should concentrate on yourself and your kids, especially the one that is ill. 

Hugs,
Connie

Butterflythree
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Date Joined Oct 2007
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   Posted 1/10/2008 6:47 PM (GMT -7)   
Ggirl, I agree with you regarding addiction. I don't think people choose to have the addiction, and some people are better at overcoming them than others. It is just so sad for them and the people in their lives. There were a lot of people that didn't understand why I kept holding on all these years, but I just couldn't give up on him. There were many times that I wish I could. I guess people didn't see the man I did. Sometimes now I feel cheated. My hopes were that someday he would overcome the addiction, and we would have a normal life (whatever that is). He actually had cut back a lot on the drinking and things were starting to look up, then we were told he had cirrhosis. It seems as if I am watching him slowly slip away from me.

I have an uncle that died of cirrhosis when he was 36. He wouldn't quit drinking until it was too late. He was one of the nicest people I have known, would never hurt a soul but know one could stop him from hurting himself. I'm sure that he didn't want to continue hurting himself. He just couldn't figure out how to stop.

That sounds like one awesome room. I'll have to think of some colors for my padded room in case the need ever arises.

Take Care
Butterflythree
 
There is always hope!


1Shelly1
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Date Joined Oct 2007
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   Posted 1/10/2008 8:10 PM (GMT -7)   

Ggirl, I think that spouses or significant others and family members of alcoholics are so brave. I had so many relatives that suffered from alcoholism I couldn't even begin to count them all. My own parents were never drinkers but their siblings, aunts, and uncles were. I watched in horror as a youngster as my relatives suffered from chirrosis and esphogeal varices. My favorite uncle bled out several times from ruptured varices and finally died from it. He would never seek help or stop drinking even tho he was so incredibly ill. He stayed in denial until the end. The family stuck by him and loved him no matter what. As an adult I find that a courageous thing to do. I guess we see the inside of the person or remember them how they were and not what they have become. I agree that you have to take care of yourself and your children. Your husband has made a choice not to stop and to not take advantage of AA. It is so darn traumatizing to watch a loved one suffer and for everyone aound them to feel so helpless. I think you should continue to offer him help and never give up on him. Even if he gives up on himself. On the otherhand you have children and yourself to take care of first. God be with you and I will keep you in my prayers.

 Shelly


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2008 10:21 PM (GMT -7)   

Alcoholism is a disease of denial.  Who would want to cause themselves so much sickness and remorse on purpose?  No one.  But it is a case of "can't live with drinking and can't live without it"...or think we can't.  Talk about being between a rock and a hard place!  I had to write off my own mother when I was about 40, as I simply could not take being hurt by her any longer.  It got to the point where she was hurting my daughter and grandkids, as well--by asking them not to call her "grandma."  She was convinced the young men she was involved with thought she was MUCH younger than her actual age (in her 60s by then), when they actually were just using her and taking her money.  I believe by that stage she had what is known as a "wet brain."  Alcohol does kill off brain cells, and when a person drinks heavily for years...it does take a toll mentally as well as physically.  Between the alcohol and all the drugs I did, it's a wonder I even know my name (my mother didn't by the time she ended up in a hospital prior to dying of cardiac arrest.  So sad.) 

So for those of you who cannot understand why your husband or other significant person will not stop drinking when they know they need to, you have to realize that is the nature of the disease...not just the person being obstinate.

Connie


1Shelly1
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   Posted 1/11/2008 8:01 AM (GMT -7)   

Connie is right! Alcoholism IS a disease. Again, no one chooses to be an addict. I think it becomes the norm for them to drink and they are sometimes unable and/or unwilling to do otherwise. I believe that is why so many are not in AA or other programs to help themselves. It is so very sad and seems like such a waste of human life. I wish we understood more about addictions and how to help people who suffer with them.

 Shelly


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2008 11:07 AM (GMT -7)   
"I think it becomes the norm for them to drink and they are sometimes unable and/or unwilling to do otherwise. "

Shelly, you are exactly right about this. I've heard many times in AA that it's natural for an alcoholic to drink--and unnatural not to. That is what makes it so difficult to quit and "live life on life's terms." It took a good 6 mos. for the fog to clear after I stopped drinking, but when it did I felt like I'd been set down on an alien planet. I had to feel and do things w/o alcohol that I'd never done sober--and it wasn't easy. Not easy to trust that sober AA members knew what was best for me, either.

Some get so far and then stop (my ex-husband did this.) They become unwilling to look at themselves honestly, so they slam the door shut. The pain becomes too much, and they drink again. HOW does it work? Honesty, openmindedness, and Willingness.

Connie

Post Edited (hep93) : 1/13/2008 2:38:27 PM (GMT-7)


Butterflythree
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Date Joined Oct 2007
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   Posted 1/11/2008 5:15 PM (GMT -7)   
Connie and Shelly, I agree with everything you both are saying. I also wanted to add that alcoholism is inherited genetically. My father in law passed it to my husband. It also runs in my family. I am so worried for my kids. My oldest son doesn't seem to have a problem with it but I do worry about my two girls. It looked like my oldest daughter might be on that track until she found out that she was pregnant. I think the pregancy was a blessing in disguise. I just hope she doesn't start back up after the baby is born. I had problems with alcohol when I was her age. When I got pregnant with my son I stopped drinking. Although I find myself getting the urge for alcohol when things are not going well in my life, I don't give in to the urgers. I hope that it was just a phase with her.
Butterflythree
 
There is always hope!


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 1/12/2008 1:08 PM (GMT -7)   

Hi Butterflythree, I wanted to clarify something you said in your post, "I also wanted to add that alcoholism is inherited genetically." That statement is only partially correct. Many studies have been done to find out if alcoholism is genetic or not. So far as I have been able to assertain the answer is NO. What is true is that there is a genetic propensity to become an alcoholic. Or maybe it's easier to understand if we realize that chidren of alcoholics are at greater risk of becoming an alcoholic. Also, you have to add the environmental influences. If someone has the propensity to drink and they are influenced by family members (especially parents) they are more likely to become alcoholics. I think that's what you were trying to say anyway.

 Shelly


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 1/12/2008 3:12 PM (GMT -7)   
Thanks Shelly, Are you sure you weren't meant to be a teacher? You are really good with words and explaining things. Thanks also for explaining the TIPS procedure. I did research on it but was unable to put it into words.

I also wanted to show the devastating effects alcohol and drugs has on a family by giving an example of some things that just happened in mine:

My cousins (21 and 22 years of age) were in a car accident in November due to drinking and driving. One was thrown from the vehicle and died. The other survived. They grew up together and were like brothers. At the memorial family and friends thought it was a good idea to honor him by breaking out coolers of beer and pouring beer on his grave. Afterwards there was a party at the ministers house that also included alcohol (I have know idea what kind of minister he was). I was hoping that the death would have the opposite effect, and it would open a lot of peoples eyes. The kids that he grew up with just continued with the life style they were accustomed to. The cousin that survived was found dead yesterday morning of an apparent drug overdose. Their mothers are my aunts. We were raised together. My son was born the exact same day as the boy that died in the car accident. I can't imagine what I would do if it were my son. I just wish that kids didn't have to learn the hard way, and I wish that people would open their eyes. Its not just them having fun. It is them destroying their lives.
Butterflythree
 
There is always hope!


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 1/12/2008 5:16 PM (GMT -7)   
Butterflythree, I am so sorry about the boys. Kids or young adults have no concept of consequences to their actions. I think that for many of them they feel invinceable. They want to be like everyone else and unfortunately they pay the price which may include their lives. There is no way to explain the minister's behavior especially since he/she is an adult and could make a difference in their lives. I'm with you; I just don't understand it all.
 Shelly
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