Quality of life, need help!

[JAVISI]

Dear friends,
I am hoping to get some insight on what you think I should do! I have 2 weeks to deccide. The 14th to be exact. My bowels don't work right but wose off I can not swallow right! I have no gag reflex. I aspirate fluids and food into my lungs. The last time I gaot pneumonia I almost died. Every time I get it it is always in both of my lungs. I am 40 and want to have a lot of years left but.....

Just before Christmas I had a gastrostomy tube placed in my stomach. The next day I became septic and had to have surgery to remove part of my bowel because when it was place I got a hole perforated and all of my stomach contents we just sitting in my stomach. Another extended hospital stay.

I had the Gastrostomy tube and all it did was cause me trouble. Just a week ago I spent a week inth hospital because of the pain and inflammation due to my body rejecting the tube.

Now I have a tube that runs down my nose and into my throat and down into my stomach. It is painful, I hate it. My delemia is do I get another tube in my stomach. Or just go with out it and risk pneumonia?? I just really don't know what to do! I am unable to eat but if I don't get another tube I will enjoy food again. I long to be able to eat to taste food. But yet I risk pneumonia.

Now this is the issue of quality of life? Do I live a life wanting to eat and having tubes running out of me? Risking another rejection of my body OR do I leave every thing out and chance pneumonia? I have thought about going with out the tube and if I get pneumonia again. Having one placed!

I am lost, what should I do. I know ultimatly it is my decision but I would appriciate some thoughts from any of you!

Many sincerest thanks, :)

[moose53]

((((((Javisi)))))),

http://chocolate-moose.p5.org.uk/MINIS/huggiebears-mini.gif

You know something, Javisi, I'm sorry that you're having to face a decision like this.

I'm not really in a position to offer you advice because I've never had to face something like this. I AM aware of a lot of the feelings that are involved 'cause I've hung out in the Child Neuro forums a lot over the years.

I have two suggestions. You can toss 'em around in your head and talk 'em out with your family and see if any of what I've said helps.

One suggestion would be to visit the Child Neuro forum and talk this out with the Moms and Dads there. They've been in the position that you are of having to make a hard, life-impacting decision.

The other thought that I had was to see if the doctor would be willing to put you in touch with a couple of people that have made the decision in both directions. There are a lot of people, who if asked, would be willing to help.

I hope that you can find a solution to this that gives you the best-quality in your life, but, also keeps you safe.

Maybe some quiet time praying to G-d (if you believe) or asking The Universe to help guide your steps in the right direction for you might help you also in making your decision.

Hugs.

Barb

[JAVISI]

Barb,
Thank you so much for your response. I was afraid no one would. It is a little touchy since ultimatly I know that it is my choice. Ever since I got sick, my dad has treatedme like a child again and is very vocal about what he wants me to do! I understand where he is coming from, you never want your child to hurt no matter how old they are!

My family is just tired of seeing me sick and in the hospital. I am also tired of my hospital stays. I do spend a lot of time in prayer. But I think my thoughts get mixed up with his and I really don't really give it all to him, I do but then I take it back. Dumb I know because he ultimatly knows what I should do!

I will try getting on the child neurology forums. I am so thankful just for a little bit of thought from others. I feel like I am alone in all of this even though I do have family that really do care for me and really do want the best for me.

Thank you for not letting me feel so alone, Laurie:)

[moose53]

((((((Laurie)))))),

http://smileys.smileycentral.com/cat/11/11_2_104.gif

Oh, parents -- I know -- speaking as one myself: we just can't help it. We invest so much in our kids, we'd probably stand in front of a tank or a falling redwood tree to protect our kids.

Sometimes we just can't see that you don't really want us to prevent all the bad things from affecting you, you just want a little guidance...

Speaking for your own parents -->> "sorry about that" -- sometimes we just can't help ourselves :o

You know, Laurie, I've spent a lifetime fighting depression, overcoming my brother's suicide and fighting all the other crap that life seems to want to throw in the way.

Sometimes, the best way to make a decision is to give yourself the peace and quiet you need to hear your own thoughts. A couple of techniques that help you make a decision are: writing in a journal, or just throwing down words on a big sheet of paper until you see where your inner self is guiding you.

BIG HUGS. Stay strong. Whatever you decide in the calm and stillness that's inside your heart will be the right decision for you.

Barb http://chocolate-moose.p5.org.uk/MINIS/holding-hands.gif

[JAVISI]

Barb,
when I was in the hospital I wrote down all of the pro"s and con". They both were about equal. I know how my parents feel also and I know they just want what is best for me. My kids are 23, 21, and 20. I would try to stop them from falling or making wrong decisions any way that I could if possible.

I just hate the pressure not to get another tube in my stomach. Frankly I am afraid that I will die from pneumonia because it is ineveitable with out the tube, although my salive goes into my lungs when I sleep each and every night. I have scaring in both of my lungs from my prior pneumonias. I am not ready to die yet! But I want to live a happy and as normal of a life as possible.

I live out on a farm and plan to enjoy the sun today and spend some quiet time really thinking. I write poems to get rid of the pent up feelings I have inside so I may do that and see where it leads me.

Thank you for your caring kindness!:D , Laurie

[moose53]

Hey, ((((((Laurie)))))) http://deephousepage.com/smilies/wavey.gif

Picture a Moose sitting next to you in that sunshine :D

We've had weeks and weeks of rain here. Seems like just when you think you might be able to go out, it starts raining again.

I think it's all caused by my thinking that we would have a drought this summer because we really didn't get enough snow last winter. That's what I get for pondering on the weather :p

When I did my "thought clouds" -- did I ever tell you about "thought clouds"?? Draw clouds on a BIG piece of paper. Then put a word inside of each cloud. When the paper's full, draw lines connecting the clouds together. It'll help you see how your thoughts are flowing.

It's not so much balancing the pros and the cons and as being able to see where your heart and The Universe are guiding you.

Well, anyway .. when I did my "thought clouds", it helped focus my thoughts and actually SEE the direction of my thoughts.

Right now, I'm thinking I wish it would stop raining so I could go out and get some pickled plums. I have NEVER had a pickled plum in my life -- yet I've been craving them for about four days now. And -- NO -- I'm not pregnant -- you haven't seen me on the cover of The USA Today, have you :D

Enjoy the sun. Celebrate your life and your poetry. The answer will come to you. BIG HUGS.

Barb

[JAVISI]

bARB,
had a nice day here in Nebraska but it is calling for rain for the next 3 days. We get a little sinshine and a lot of rain. This year any way. My brain is on slow drive today. I am just plain tired. My dad called and said that my grandma who had surgery last week. Had to go to see the sugeon again due to a lump over her pacemaker/defibrillator that is where her problems strted in the first place. He wanted to know if I wanted to go. I said yes but didn't feel well later I called my grandma and dad and told him I just wasn't feeling well.

My big problem is guilt I feel like I have to please and help everyone, even though I know that is an imposible feat! Anyway she had a 2 unit blot clot that had to be removed and had to go to surgery. I know feel awful that I wasn't there. My dad called she came through the surgery okay. That was a releif but I felt like I should have been there feeling bad or not. I feel like a mess.

I also have a son that got a DUI and is awaiting sentencing, in the process of him getting pulled over he tried to out run the cops, hit a police car and a Sherriff. The officer had minor injuries. Thank heavens. My son did try to stop but his car slid into the car! No need to defend him. He was sooo wrong for drinking and driving. He has been in jail since January. I have finally got divorced to an abusive man after 25 years. When I got sick and couldn't pay the bills I became a nothing. I left last February and 2 weeks later he moved in with another woman.

I have 2 other kids also that are doing okay although my daughter seems to be a loser magnet. Following in my footsteps. I left a little to late to stop before any damage was done to my kids. Sometimes my brain is full it feels like it could explode!:eek:

I do have the most beautiful sweet and loving grandchildren, My grandaughter is 3 and Grandson is 1. Sorry this post is so depressing sometimes holding the pain in just makes my illness worse! So you got to listen to my rant! Sorry, No where were we, Me moose and a hillside in the sunshine eating ripe and juicy plums!

Thanks so much your responses really help and I will lok toward the clouds, Laurie;)

[Cry Tears]

Laurie....I know, I know how you must feel...been down that nasty trail and know where you're coming from.
AND...I know what those NG tubes feel like...I've had them many, many times because of having active Crohns disease.
I know anytime I have a medical "Crisis" and I must go to the ER,
I always get the nose tube shoved down my nose...sometimes takes them way too many attempts mostly cuz I'm vomiting violently that sometimes cannot be controled.
Then they keep that danged tube in for days and days...feels like a long barbed wire stuck in your nose...it HURTS!
Really hurts...but you get "used" to it...but I'm sure you know it does...the one used for feeding is much,
much smaller and not the large ones, pencil size, for Lavage (sucking stuff out of your stomach).
I also suffered from other debilitating health symptoms I thought I'd NEVER get past...
but I did...not 100%, but enough to get out of bed now and enjoy my grand daughter,
Madi...the one reason I want to live for...Madi!
I know you have little loved ones too! They need a gramma! So there's one reason to live.
And who's to say about your gag reflex....it could come back some day whenever whatever "process" is going on may reverse itself. You never know.
My mother in law lived on TPN over 10 years...lived very well this way...she had Scleraderma her entire life and it turned her intestines to stone. So only way for her to recieve substanance was thru a vein.
Only hassel was getting hooked up several hours during the night to the IV line.
I really hope you can find a good medical lawyer....one who'll help you sort out the cause of this and if neglegence,
You must be compensated for this. I wish I would have gotten one for the damaged nerve in my bile duct after being injured during gall bladder surgery...I have pain there all the time...sometimes really bad pain.
But I was too ill afterwards with the AVM and severe anemia...always needing transfusions every other week for 3 years!
Life was a virtual nightmare then.

There are many good lawyers who can help you with this, but must do some searching and
interveiwing to weed out the bad ones.
When we become so ill....our family tends to treat us like children.
Usually because they're worried and they care so much. Sometime because they're just nasty people (like mine!)
I'm glad to hear you've found someone to live with that helps care for you and have a nice place to live out in the country.
When I was at my lowest, I wondered how God could let me "live" this way.
My prayer then was only this "God...either Heal me, or Kill me!"
"...and what ever you're going to do, you better hurry up and do it!"
I cried this out all the time...I was so angry at God...I could only feel anger at the one I should have trusted.
Those were my only "prayers" as I was so mad at God for allowing me to become so ill and fatigued like I was.
I suffered for several years, and I'm finally begining to come out of that nightmare.

I'm so thankful that God did not to choose to "Kill me"!
Madi would be devastated...she loves her gramma, big time!
And my wonderful husband, Larry...he would have died for sure...
Right now he's going thru some cardiac issues ON TOP of his recent return of his tongue cancerm its precancerous tumor.
If I was dead, how on earth would this good man get thru the death of his wife of 35 years and his health issues?!?
He doesn't deserve to have his wife die after suffering years of illness...in fact, non of us do.
I was selfish in only wanting to die. I could only think of self...but I'm sure anyone would understand why.
Laurie....if you died...you'd never be able to eat anyway! If you can't ever eat...at least you can LOVE!
It would be devastating to never be able to eat again. How hard this would be, but you'll get thru it!

God isn't going to magically going to heal anyone unless its His will for His glory.
We live here on Planet Earth....where terrible things continue to happen because of sin.

Until this is all over and His purpose for ~~allowing~~ sin is fulfilled, we can only hang onto the hope of Salvation and Heaven when He returns for His people where they'll never be another sad day, no more pain, no more tears!

There is a lot of sadness all around us...then again there's a lot of happiness and good things too!
We've got to hang onto the good things and try all we can in dealing with the bad things that hurt us.
I had thoughts of taking my own life years ago when life was at its worst. I almost took my own life one day.
I dont know what kept me from doing it...i was just a breath away from doing so...it scares me to think of that time.

Little Madi had been taken away from us because of the other grandmothers evilness and lies.
She gave the police false info and ID..didn't know she was a crook from Texas! She was good at this, experienced!
It took nearly a year to gain back custody....now the family knows the true person she really was...she not allowed to ever see Madi ever again...its been 4 years now. She went to jail too!:eek:
But not until she did a lot of damage to many people...especially little Madi.
Because I was so ill, mostly at that time the anemia from the AVM (anuerism) on top of my Crohns flaring really bad AND I had an intestinal infection and fever of 104*....
I'd just had 2 bowel resections, then vitamin deficiencies from losing several feet of intestines...
which only caused a cascade of other health issues such as Peripheral Neuropathy, muscle weakness, fatigue...list goes on...but you get the picture. I was very very sick!
And being so ill caused me all sorts of psychological and emotional problems.
My own sisters, brother AND mother turned against me a began to shunn me...but I have a terribly dysfunctional family...my one sister is Bipolar so that explains a lot with her, but I miss her terribly...as its been almost 4 years since she last spoke to me.
Now our mother is the one being shunned by them and I'm the only one talking to her...she now has begining Alzheimers.

I did NOTHING wrong or anything to deserve being shunned and abandoned by this "family".
But like my councilor says...they don't deal with truth...I was seriously ill and they want to beleive the lies our adopted daughter tells them....she will do ANYTHING for attention...even nude dancing! And sexual addictions.

Its good fauder for them right now! But its nothing more than what they did to their own kids,
in fact much less than. (I'd slapped her for her pathelogical lying ALL the time...one time just couldn't take another lie!)
..so I did nothing terribly wrong. Especially where I should be shunned from that family.
But this same family takes in my one sisters husband (She's a professer at State Univ) He's a convicted rapist and drug addict, welcomed like he's a good guy! Oh well. Sicko psycho family for sure!
I know I'm a good person. I'm loving, giving and kind. Have compassion for others pain.
They don't....are very cold and very mean to others.
I've found a lot of self worth in giving to others such as volunteering with my dog Satin as a Pet Therapist...now looking into getting a miniature horse to take up to the childrens hospital for pet therapy.
If I do, I'll name her Mini-Whinnie! Or Mini-the-Pooh...or something fun.
This will take a lot of searching for just the right miniature horse.
One year I even decorated a tree for the hospitals festival of tree auction at the civic center...it sold for $7,000!
Made the evening news! I really bit off more than I could chew, but many people jumped in to help.

I do hope you'll find answeres in the right decisions you're needing to make.
You are the ONLY one who can make this choice. I would seek professional help...perhaps a councilor who deals with chronic illness will help. I know my councilor has helped me thru many trials.
I do feel that God looks down at us with tears in His eyes knowing the pain we must endure for a time.
Like a loving Father, he must be so broken hearted to see us suffering pain and sadness.
I know He hurts when we hurt...that He feels sorry for us when we have these trials.

Just like Job....satan told God the reason Job loved Him was because he was so blessed.
God said Job would still love Him even if he lost everything...so satan said let me take everything away to prove this!
He'd challanged God. God allowed satan to do all this to Job, but not take his life.
No matter what happened, Job continued to love God despite his loses.
His freinds only taunted him, his wife said "Curse God and die!"
When satan saw he couldn't do anything to make Job hate God...
his challange was over and he left Job alone after he was done ruining him and his family.
But God blessed Job and gave him back double what he'd lost, blessed him with good health and long life.

We must try to take a lesson from this....to hang on till these trials are over....
hang onto God and when this is over, you'll be blessed double what ever you've lost.
For some it may not be here on planet earth....just a short time we'll all be home!
The only other choice we have is to "Curse God and die".
Thats what I was choosing for awhile and only suffered as I had no peace and no trust that God has the ultimat control.
He knows the end from the begining....we can't even begin to understand...thats where faith comes in.
God Bless you...huge gentle Hugs....Cheryl

[JAVISI]

Cheryl,
Thank you1 You have been a good friend with such good sound advice and it means so much to me to know that I am not alone, although I pften put myself in that position myself. I guess it is my way of protecting myself. Growing up in a violent and alcoholic family, trying to take care of everyone and every thing. I worked so hard to get peace and harmony to no avail! Thus that is how my personality a4rose.

I try to tell myself that I am not angry at God but at times I really am, and I know he knows it! He knows everything! He says that in our times of trouble we are made stronger. I have felt him carry me when I have felt like giving up! Feeling like such a burden to so many people. Then feeling guilty for feeling sorry for myself. Because I do know that their are many people that are much sicker than I am. My daughter blessed me and told me that When I got sick, God thought that I spent my whole life to others he was giving me a rest, a time to care for myself! I am alucky woman to have the kids that I have, mistakes and all!

And my grandchildren are such a blessing I long to live to watch them grow and get those hugs and wet kisses. The I loveyou's that are so hearfelt that only a child can give you! I am so lucky to have a boyfriend that loves me and takes care of me. He cares so much for me it is some times hard to fathom that someone can truely love me the way he does. I have never had a love like this before. My love always came with a price before. With years of beatings and beleiving that I desrved it!

I have almost died so many times, each time I think of my children, granchildren and boyfriend knowing that I need to stay here on this earth for them! I want to live and be happy! Happiness just seems to come hard for me. Like it is a foreign thing to me! You make me realize that there are so many things to live for even you and this site are a reason!

The tube in my nose is a pain but I am tolerating it. The Doctor had a hard time getting it in and now not being able to use my breathing machine has made me so tired and it is then that I do not think clearly. My medical problems are so extensive it can get over whelming!

I am dreaming big and reaching for the stars!;)