How Low Can You Go, Til, Eventually You Give Up?

By Latest Reply 2009-01-31 07:24:47 -0600
Started 2009-01-19 16:30:51 -0600

I am "dead" serious, and need your help.

I have been seeing specialists for the last 2 years, and through all the tests, and increasing pain, loss of memory, cognitive function; even small tasks are becoming difficult for more than one reason,

It appears I have early-onset dimentia; but wait. That is not all.

I have also got a rare muscle disease that can not be diagnosed here in NJ; I have to go to a sub-specialists. That means after all this, over two years of waiting. I finally have the specialist, within the specialized medication which treats only rare muscular diseases.

And guess what? I have had it; I do not want to go on any more.

I just want to live out my days right here with my husband, or end it if I have to go to another doctor.


42 replies

midrd32
midrd32 2009-01-24 14:24:58 -0600 Report

Honey I know that it feels that you can't look at one more Doctor or one more test or one more pill. You just have to have faith that the lord is with you and will always be there. Keep him in your thoughts and he will guide you. Good luck and God bless.

2009-01-25 07:11:59 -0600 Report

I see a specialist on February 5th, because my husband says he will make sure I get the help I need.

I still don't know if it is not too far away.

First diagnosis: MS; second, I needed spinal surgery; third; Porenael neuropathy,unspecified lesions on my on right parenol lobe.

Then it was a specialist in muscle diseases, which they (3 doctors) agreed to change to someone who deals with Acute Myasthenia Gravis.

I don't know if I can stand anymore diagnosis' I just wanted the real one 2 years ago, before it got too far, but because of my pacemaker, my cardiologist would not let them do an MRI until October 2007, after the more painful tests confirmed a severe problem. Such as a lumbar puncture and more, and then more doctors.

I have seen at least 5 more doctors' since then. My husband, all along paying with both money and days off of work.

Well, I guess I need to rest and think, now. Thanks for all your replies.

I guess I don't really know how I feel as to what to do next yet.
Claudia

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-25 11:35:11 -0600 Report

I'm no expert on the matter, obviously, but it seems to me that it might be less daunting and overwhelming if you just concentrate on facing each day and each doctor's visit as it comes - break the worries down into little compartments and just approach one as it comes. Worth a try, anyway. You need to remember, too, that medicine and all the technology available today are on your side and improving daily. As I've said before, I believe we are all stronger than we give ourselves credit for at times. I know I've experienced things in my life and later wondered how I made it through. But I do know how I made it…through God's love, grace and mercy. I will think of you on the 5th, but also as you go through this difficult time.

2009-01-26 05:47:42 -0600 Report

Thanks so much for that. It is appreciated, but some times I think it is just the FLavour of the Month, if you know what I mean.
Claudia

2009-01-31 07:24:47 -0600 Report

I think it is a way for one doctor to pass me off to another, to keep the money going, spending more and more of my husbands' money.

It is like trying to find the end of the road, through a broken window.

John Crowley
John CrowleyCA 2009-01-20 17:58:13 -0600 Report

Claudia,
I, like others, wish there was some way to say "just the right thing" to help you rise above what you're going through.

I know how hard it can be when depression and chronic pain gang up on you. Your logical brain can make all its best arguments, but it doesn't seem to matter.

I find comfort in these lines from a favorite poem:
"But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness."

So often I find that to be true, when I'm feeling down. It's really fatigue and/or loneliness that lead to fears that aren't based on anything real. When I pause long enough to think about what it is I'm fearing, I realize that there really isn't anything to be afraid of. And I can start to dismiss the "dark imaginings."

But most of all, know that there are people who care about you. Hang in there.

Mustanggirl63
Mustanggirl63 2009-01-20 03:00:19 -0600 Report

Oh please don't give up. At the very least give the specialist a go. For the dementia have you been placed on Namenda or Aricept? Both of these have prooven results in slowing the progrssion of the disease. I worked in a nursing facility and now in mental health and have seen very good results. If you are feeling suicdal please seek help. I myself take Celexa for depression after divorce and it is really a help. Keep your faith and may God yor friends and family be there for you inthis difficult time. Evelyn

2009-01-20 05:11:51 -0600 Report

I am still here and definitely feeling dark, but am also crying, knowing I have so many good friends here, thanks.
Claudia and thanks for all your loving prayers in which ever way you choose to share with me, it is well accepted.

2catty
2catty 2009-01-20 16:02:05 -0600 Report

It's like the old song, I will survive. You will and things will get brighter. You are very loved and this earth needs you and so does your husband.

daetura
daetura 2009-01-19 22:43:07 -0600 Report

Claudia… let go and let God… he will never give you more than you can bear. When you can no longer go on… then just let Jesus carry you. My prayers are with you. …

Avera
Avera 2009-01-19 22:27:31 -0600 Report

Hello Claudia,

Please read this story and then read what I wrote at the end.

The Cracked Pot

A water bearer in India had two large pots, each hung on the end of a pole which he carried across his neck. One of the pots was perfectly made and never leaked. The other pot had a crack in it and by the time the water bearer reached his master's house it had leaked much of it's water and was only half full.

For a full two years this went on daily, with the bearer delivering only one and a half pots full of water to his master's house. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do.

After two years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, and I want to apologize to you." "Why?" asked the bearer. "What are you ashamed of?" "I have been able, for these past two years, to deliver only half my load because this crack in my side causes water to leak out all the way back to your master's house. Because of my flaws, you have to do all of this work, and you don't get full value from your efforts," the pot said.

The water bearer felt sorry for the old cracked pot, and in his compassion he said, "As we return to the master's house, I want you to notice the beautiful flowers along the path."

Indeed, as they went up the hill, the old cracked pot took notice of the sun warming the beautiful wild flowers on the side of the path, and this cheered it some. But at the end of the trail, it still felt bad because it had leaked out half its load, and so again the pot apologized to the bearer for its failure.

The bearer said to the pot, "Did you notice that there were flowers only on your side of your path, but not on the other pot's side? That's because I have always known about your flaw, and I took advantage of it. I planted flower seeds on your side of the path, and every day while we walk back from the stream, you've watered them. For two years I have been able to pick these beautiful flowers to decorate my master's table. Without you being just the way you are, he would not have this beauty to grace his house."

Each of us has our own unique flaws. We're all cracked pots. But if we will allow it, God will use our flaws to grace his table. In God's great economy, nothing goes to waste. Don't be afraid of your flaws. Acknowledge them, and you too can be the cause of beauty. Know that in our weakness we find our strength.

Author Unknown

Just wanted you to know that all the things that you do on this site sure does bring flowers into all our hearts. Many is the day that your friendships to us have helped us have a better day.

Donna

caragypsy
caragypsy 2009-01-19 21:24:12 -0600 Report

Claudia Please don't give up. You mean so much to so many people. And I know it would hurt me so much if you were not here.
Your friend Cara

2catty
2catty 2009-01-19 20:56:31 -0600 Report

Hi, First just let me say. I am not a christian, but I am spiritual. I love mother earth and our life force. If you are anything like me you don't like to be preached at, you just want to be heard. Well, I hear you loud and clear. I cannot understand your pain, only you can. But I can lend a ear and try to understand your frustration. At any time you need to vent or need someone to share your feelings with I am here. Please do not give up your life force. Be strong and reach out for help whenever you need to. Blessed be.

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-19 21:56:23 -0600 Report

I'm never sure what it means, exactly, when someone says they are not Christian but they are "spiritual". However, it is evident to me that there are a large number of people on this site who are Christian and place their faith in God - who rely on His comfort and strength.

I think you're entitled to your feelings, but to accuse those of who are Christian of "preaching" is an inaccurate statement. We deal with life and love and care for those around us in the only way we know. I am certain that each person reading Claudia's comments and caring enough to encourage her feel her pain deeply. We have, like you, offered to be there for her - either to talk or to listen.

None of us can fully understand what someone is going through, and I don't think we pretend to. We just feel from her words the intense pain she's experiencing - the feeling of frustration and heartache. Because we encourage her to seek strength in God by praying doesn't mean we are "preaching", I don't think. That's something we firmly trust and believe in - the immense and awesome power of prayer.

I hope this doesn't sound as if I'm angry, etc. I am not. But I just wanted to clear up at least my perception of the feelings that are being expressed to Claudia. We are all deeply concerned and want her to know how much she means to each one of us. In any event, I will continue to help her in the only way I know how - by praying for her and her family. I think she's already been through a lot and survived. That shows that she's a strong woman, in my opinion.

2catty
2catty 2009-01-19 22:00:47 -0600 Report

It simply means I don't believe and live my life by what a man wrote in a book. Spiritual means I do believe in a higher purpose than those who are petty and close minded. And also I have been on here quite a while and know a lot of people who have the same feelings as I do. I don't judge people though. But I guess some do.

2catty
2catty 2009-01-19 22:02:44 -0600 Report

Also thought I would add this is not about beliefs this is about a person seeking love and care.

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-19 22:07:33 -0600 Report

That's fine. I just had felt it was not quite fair to indicate we were trying to "preach", or that we were not there to talk with her, etc., because many have offered to do that.

2catty
2catty 2009-01-19 22:11:31 -0600 Report

Did I say you? No I didn't think so. I was saying I did not preach. It is what I learned in college when I was taking psych classes. It is better to listen than to talk.

2catty
2catty 2009-01-19 22:13:27 -0600 Report

Oh also don't act like you speak for others, because these people you speak of are my friends. Thank you and blessed be.

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-19 22:16:51 -0600 Report

I don't pretend to speak for the others, but am basing my comments on their comments. I wasn't trying to start any big argument. I'm sorry if you're upset. I was not criticizing your beliefs in any way. That's certainly a personal matter.

2catty
2catty 2009-01-19 22:52:17 -0600 Report

Apology accepted. We are all human no matter what. And I have a loving and kind nature as I am sure you do.

NormaJean
NormaJean 2009-01-20 13:06:27 -0600 Report

I totaly agree with you Lady Di ,it did sound a bit offensive ,nobody is preaching to anyone we are all offering words of encouragement and will continue to do so..we are on this site because we feel free to share our thoughts and comments and to offer support to all those who need it be it spiritually or otherwise…Have a blessed day everyone.

2catty
2catty 2009-01-20 13:27:08 -0600 Report

Again I repeat I did not say you or anybody else was preaching. If you read my post I said "I" am not going to preach at her. My friends on here know me and knew what I was talking about. Some people think everything is about them I guess. Thank goodness not all people does. Happy Happy Joy Joy. And further more this is not a typical support matter. It is a life or death matter. A lot more serious than most. Blessed be.

2catty
2catty 2009-01-20 13:28:59 -0600 Report

And please quit making this about me. This post is for the person needing love and understanding. If you need to harp at someone go find someone not on here.

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-20 15:43:04 -0600 Report

I apologize to all of your for causing this portion of the discussion. I should have just kept quiet. I stand behind my comments, but I wish I had just let it go. In any event, 2catty is right. This is not the place for this sort of thing and it needs to be dropped. Thank you for your comments, Norma Jean. But let's forget about this and concentrate our efforts on supporting and encouraging Claudia. Claudia, I'm truly sorry I started this.

2catty
2catty 2009-01-20 15:57:23 -0600 Report

It is o.k. LadyDi. We just took each other wrong I guess. We are human. And I think everything is ok. I am still your friend if you need me. Blessed be.

NormaJean
NormaJean 2009-01-20 17:43:22 -0600 Report

I was merely expressing how I feel,we all are all here to support each other ,Claudia needs us right now and that's what we're here for,so don't give up no matter what Claudia…we are all praying for you…

Gabby
GabbyPA 2009-01-19 20:45:27 -0600 Report

This brings up some childhood experiences that I really don't care to relive. I had a wonderful school friend in a quite yet highly creative girl. We spent days writing, drawing, being in nature and just enjoying our friendship. She lived a life of physical and mental abuse with physical pains that I have never been thru personally. She struggled with depression and though with me, she enjoyed life. For the most part, she struggled with the fairness of it all.
Three times in high school she attmepted to take her life. I was crushed by each attempt because I felt I had failed her. It made me feel like what we shared in sisterhood didn't mean a thing. After her last attempt, I told her how selfish she was for not thinking of all the people who DID love her. How her attmepts caused greif over and over for us.

Here is what the world would have missed if she had left too early.
*She would have never married the love of her life and shared a lifetime of adventure in Egypt, Saudia Arabia, Australia, and all of Europe.
*She would not have published her abuse and shared with the population her shame and her victory.
*She was a self taught primitive painter and had several "one man" shows where all her proceeds went to relief for Rowanda.
*She would never have touched my heart and the hearts of her friends with her incredible generosity, simple caring and quirky humor.

She did eventually quit. It crushed me horribly. I felt so helpless. She had moved to her homeland of Holland, and though we had distance in miles we remained ever close. I missed the signs somehow. It was a very black day for me. It was a crushing blow to her husband who though spoke little English, sought comfort from our friendship. I can only imagine how he felt. She was his apple, the spark of his heart. It was taken away, by choice. Is that what you want to do?

firefightermom
firefightermom 2009-01-19 19:58:29 -0600 Report

hey again I was looking through the discussions here and on Jan.11th you wrote how when someone tells you that you can't do something you want too it makes you want to do it more. Well, guess what it is straight from the devil telling you you can't or don't want to go on so you get mad at him and show him that he is a liar and a thief and he can't win with you.Get angry at those thoughts you are precious and even though things look and feel bad you can beat these feelings you will beat these feelings and you will go on because you are loved.and you love.

NormaJean
NormaJean 2009-01-19 19:15:22 -0600 Report

To Claudia ,I just read your post and I am truly sorry about how you feel ,you make me feel like crying,we all have our burdens to bear and there are times that we feel there is nowhere to turn or there is nothing left for us to do but don't give up my dear,there is hope for us yet,,I understand exactly how you feel…and God works miracles in our lives we just have to trust and believe in him and never give up…
There has been times in my life that I thought of ending my life ..but then what.We just have to keep on praying.

noel7
noel7 2009-01-19 18:39:35 -0600 Report

You must never give up.Life is has many turn around.But you must be strong,I may add some herbs and vitamin.Check your local store.

firefightermom
firefightermom 2009-01-19 19:18:29 -0600 Report

I am sorry you feel so bad and low in your spirit, what if though you give up and the journey to recovery is just about to begin??? Where will your family be without you, they need you and you are loved.Don't give up. I don't know why some people have so much to bear but I do know that Jesus loves you and He knew all your days before you were even born and He is there beside you and He wants to comfort you through this time.Talk to Him as if you are talking to me and tell Him your heart,the way you are feeling give it all to him and you will be comforted.I don't know why He choses not to heal often but I do know you can be a witness to His goodness through your walk with Him,even through pain and sorrow don't ever give up..Things may look and feel their worst but it's not,2morrow is a new day embrace it knowing that you have people that care and believing that your Father in Heaven cares most of all.we love you here..

dj7110
dj7110 2009-01-19 18:27:27 -0600 Report

I am in pain 24/7, unable to care for myself and rely on home health care services to help me care for myself. I have tried to take my own life in the past and it isn't worth it. I'm glad to still be here mainly for my kids sake. From now on when I ever get that urge to end the pain, you need to think of how it would cause pain to those in your life. This is what keeps you going. No matter how bad the pain gets at times you need to hang on for family and/or freinds in case there is a cure some day. As new things are comming out all the time. just hang in there. Take Care, David

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-19 18:55:33 -0600 Report

My heart goes out to you too, David. You've had a lot to deal with too. I never cease to be amazed at how much some people have piled on them. It certainly helps me keep my own life in perspective and to be thankful for my (primarily) good health and many blessings. I get angry at myself at times when I gripe and complain about some little piddly nothing, when so many are dealing with so much more. My volunteer work with those in need does that for me as well. A lot of physical and emotional pain in this world. You are an inspiration, and I'm sure your comments make Claudia stop and think.

shirleycc
shirleycc 2009-01-19 17:56:56 -0600 Report

Your situation touches my heart and my
prayers go out to you. Don't give up.
Perhaps you'll think I'm being nosey, but
have you been on any type statins? (Cholesterol lowering meds) So many doctors refuse to accept the fact that many people are not candidates for statins. Your description of your symptons, inclulding the "early onset of
dementia" are all symptoms of side effects from statins. And, if there is
another medication you take that can
react with the statin, the symptoms become even more exacerbated.
I know this because my sister exibited the same symptoms and it took a trip to
a neurologist (enlightened neurologist)
who recognized her problem. After being
taken off the statins, some other meds
changed and some gradual, mild physical
therapy, she improved tremendously.
Knowing this, when I started having serious pain in my extremeties I insisted
that my physician take me seriously when I told him that I didn't intend to take any more cholesterol lowering meds until
he could find one that didn't cause these
problems.
I won't lie to you and say my sister is
100% improved. She still has difficulty
with remembering things, but compensates
by writing down anything that is important. She has pain, but the source
is known (several accidents left her
with spinal injuries that are not treatable)and as with anyone with a chronic illness, she has down days.
Please remember that there are other people who love you and care for you and
want you to succeed. Your family surely will rally round if you admit that you are in need of help. Your friends here
have learned to look for your comments and your help has encouraged me, for one, to pay attention to some things I'd ignored. I can't tell you how to feel or
think. I can say that I'm a firm believer in there being a reason for everything that happens, and know we're not made privy to those reasons oftentimes, but must wait to be enlightened.
May God bless you and hold you in the palm of his hand. May your mind be lightened and your pain made bearable.
Remember, you are a valuable member of
the human race and a loved person.

Shirleycc/slpytmgal

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-19 18:04:52 -0600 Report

I'm on a statin and have been for years. I know the doctor keeps very close tabs on me with respect to that and has cautioned me more than once to watch for any signs of a problem. I've also read of prolems from statins, especially of late. I hate to harp on it, but Niacin does wonderful things for cholesterol, if you can take it. I know several people who take that alone. Keep pressing the doctor(s) to check and consider any and all possibilities.

shirleycc
shirleycc 2009-01-19 18:19:06 -0600 Report

This is in response to LadyDi's comment.
I appreciate your input about the statins. I will certainly speak with my
endocrinologist about Niacin if my cholesterol is high from my last bloodwork (last week)
I also agree that your doctor(s) need to consider all possibilities so perservere and take heart lilimarm.

highlandcitygirl
highlandcitygirl 2009-01-19 18:26:34 -0600 Report

i didn't know statins cause trouble with your thinking! i knew about the muscle weakness, but not that!
claude, don't give up , you owe it to yourself to find out if it is the statins, or any other thing! i do know how it feels to be on the downside of things, but please take a breath and carry on.

2009-01-19 17:40:31 -0600 Report

Perfect answer Diane. Claudia, I will keep you in my prayers! You are a wonderful person and a good friend. Please stay strong, prayer will get you through it! Your friend! Angie :)

LadyDi - 26259Miller
LadyDi - 26259Miller 2009-01-19 17:24:51 -0600 Report

I just commented on another discussion where you mentioned having more to deal with. God bless you, you just do not need more to deal with, do you? I wish I had the magical answer and could do something - anything - to lift your spirits and help you through this. My foremost suggestion would be to just pray, pray, pray.

I know we all have different tolerance levels, and I don't know you on a personal level, so I hope you will soon be able to think this out and get to the place where you feel better able to handle yet one more thing. If you have a minister that you can speak with, I would suggest doing that. I can't remember whether or not you're taking anything for depression or anxiety, but hope that you will talk with your doctor about getting some if not.

Hopefully you have a close friend nearby that you confide in and lean on. I know all of us stand ready to talk with you too - or just listen.

Don't try to carry all of the burden yourself. Seek help. You can't give up. I know I'll be praying for you through this, and I am sure everyone else on here will too. We'd be lost without you!

Much love,

Diane

NormaJean
NormaJean 2009-01-19 19:20:53 -0600 Report

Lady Di your words of encouragement has been an inspiration to all of us ,there are times we feel like giving up,I've been there more than once…but when I think of those less unfortunate or those who live there life in pain,like you I stop whining and pick myself up..it's hard at times..