is there more I could be doing?

[jdwills83]

if i asked you out loud God, would you help me?  if I said "please god, I need a kidney, I need another chance" would my phone ring? would they do the surgery tonight?  would everything then be alright? If I said out loud, "help me someone, there is got to be someone who can hear me!" would it be heard? By some other being? some other soul or spirit? someone more advanced? someone with the powers to heal? 

what would come true if I prayed and prayed and prayed?

is that the answer, just to have hope, just to have faith?  Let the stress subside, let all the worries wash away in the shower?

If I told you I was angry, would you ask me why?


how much longer? I much more can I endure? does the pain stop after the needle is taken out of my arm?

No

am I stong enough to keep waiting?

will I ever be healthy enough again to pursue my dreams?


will my dreams still be there when I'm at my last straw?

My dreams at night are my only escape.

[Wallyz]

Prayers. 
I don't believe in a God who helps our lives go smoothly. I do believe in a God that suffers with us.  Keep kicking at the darkness until it bleeds daylight, brother.

[Jean]

I also believe in our God, who suffers with us. I just tell him, well Father, whatever. Since my life has always been in his hands, and I was not smart enough to know it, he has taken very good care of me. I know he will continue to do so.

[MooseMom]

Oh, I have questions.  What is it that we are supposed to "have faith" in?   If I declare that I "have faith", does that mean that my suffering lessens?  Did the people in Haiti just not have enough faith?  Do the people on IHD who have suffered the most just not have enough faith?  What exactly is the correlation between faith and suffering?  I suspect there is none as it all seems so random.

What is the purpose of having God suffer with us?  Is God suffering with Haiti?  Does God suffer as a woman is raped or a child abused?  What does this mean?  I can't say, "Ok God, whatever."  I question Him and ask, "God, what ARE you thinking?"  As your bp crashes during a particularly bad time on dialysis, does God's suffering with you make you feel better?

How do any of us know with certainty that God will take very good care of us?  Can we presume to know what He is thinking or planning for our lives?  Maybe his plan is to have one of us suffer horribly for some reason that is beyond us and is Godlike in nature...how do we know?  I am not sure that I find comfort in "being in God's hands" because that could mean absolutely anything.  I can believe in God, but He has seen fit to make my son autistic and to give me ESRD, and I can't say that being in his hands has so far given me solace.  I am not sure of the nature of the God in whom I believe.  I guess he has created me with a questioning mind.

[paul.karen]

:-)

I like a good mystery.  And what is a better mystery then GOD.

To believe or not is up to a single persons reasoning.  For me i belieave because if it is a 50/50 percent gamble i want to win and have peace once my life here on earth has ceased.  I would rather be happy in heaven then continue life as it were here on earth.

Faith is what you make of it.

[okarol]

I pray for guidance and strength.

 

[Sunny]

jdwills,
You have expressed in words what I have often felt, very poetically.
I have had people tell me I must not be praying enough. Don't fall into that thought mode. Having ESRD is not about whether god is listening and answering prayers. Don't give up the faith.

[Jean]

We all have our problems. I had a child who died at age 14, I had a loving husband who died needlessly.Both of my parents died one year apart, when I was only 23.  Death, pain and suffering are a part of life. Did I grieve for them? Of course, I did and still do. Did I like it. Oh, Hell no!!!! Believeing in God and putting your life in his hands does not mean you dont try to help yourself, but it does mean that you accept the bad times along with the good ones. Its just a part of life and being alive. You live, you have pain and suffering, ( or not ) and you dies. You cant stop it, and I like to know I have some one in my corner who loves me enough to give up his own life for me.

[jdwills83]

i don't know where my journey ends or what works for the rest of you but faith, hope, and praying: never changes anything for me.  It doesn't make me feel better and I am not quite sure what to say when I am told "well we are praying for you, praying you will get a kidney"

I can talk out loud all I want but the only thing I will ever hear is my own thoughts.  and THAT is how I actually get through.. by accepting my own reality, my own fate, and knowing that no one else is in control of it but me

that's why I ask, is there more I could be doing?  Do I sit an wait while I ponder the existence of higher forms of power, or do I take matters into my own hands and try to find a better solution to my conflict? Is is inevitable that I will always remain in limbo or do things become concrete as I age?

You know some people do dialysis with a full time job, school and just go on about things, not me... I can't function I get tired and you know my labs are not always perfect

i just want to feel better because when I tackle something I want to do it to the fullest, no half ass, no quitting

and right now.. well I feel like laying down.

[okarol]

The tough thing about waiting on the LIST is that someone must die for you to get a kidney.

Was your first kidney from a living or deceased donor?  Have you multiple listed outside your procurement area? Do you know your PRA and what the chances are you'll get a match?

I am sorry, I don't recall if you have had anyone tested for you.  If so, have you explored paired exchange, or kidney chains to swap a kidney? If you could find a living donor, a stranger, would you be ok with that?

I hope you don't mind all the questions, but it can help determine if you've done all you can do.

[Mimi]

JD, God doesn't promise He will take away all of our pains and trouble.
He did promise He would give us strength to get through the tuft times.  He has a plan and everything will go according to His plan.  He gave us all free will, so He expects us to give it all our best shot, not sit on our hands.  As Okarol points our there are many more things you can do to help yourself and He will give you the strength to do it.  You are very young and I am sure ESRD is hard to take, but as time goes on and you grow older you will see some of the reasons He made this call for you and you will begin to see why He made this call for you.  Now you need to take up your cross and follow His lead.  He will show you where to go.  Pray not for yourself but pray He will open your eyes to His purpose.

Love, Mimi 

[jbeany]

i don't know where my journey ends or what works for the rest of you but faith, hope, and praying: never changes anything for me.  It doesn't make me feel better and I am not quite sure what to say when I am told "well we are praying for you, praying you will get a kidney"

My own faith is a pretty flimsy thing most of the time, but when I get the "praying for you" comments, I just say "Thank you."  Take it in the spirit in which it is intended - the person offering the prayers has a strong enough faith that they believe that their prayers will help.  Your own beliefs may disagree with that, but it's hard to disagree with the idea that someone is concerned for you and wishing you well, no matter the method.  Be it a prayer to a Christian or Jewish god, a mantra from some new age belief system, or even a moonclad Wiccan dance to help you heal  it really is the thought that counts.

You sound horribly frustrated right now.  That is, unfortunately, an all too common occurrence with ESRD.  Being angry is normal.  I think the trick to prayer helping is not to expect answers from it, but rather to use it as a method of releasing the stress that comes from living a life where so many small, every day things have suddenly ceased to be things you can control.  If prayer doesn't help, try meditation or visualization, or whatever psychobabble term you want to use to help you deal with stress.  Let go of the future for now.  You can't rush a transplant.  They happen when they happen.  Try to focus on dealing with dialysis, and improving your current situation.  If you are tired, or in constant pain, and your labs are bad, then you need to start there.  Demand some answers from your doc.  Get better treatment for the side effects.  Adjust your meds, up your hemoglobin, demand a bigger filter, a faster pump speed, or a longer treatment time if that's what it takes to help you feel better.  You can't control timing on a transplant.  You can take control of your treatments, and do every thing possible to feel better now.

[MooseMom]

I see a lot of me in your posts, jdwills, which is disturbing.  I hate the idea of anyone feeling the way I feel, so I am going to give you a few suggestions which may or may not help you; if they don't, feel free to tell me to shut up.  First, your time and your energy are limited and therefore valuable, so don't waste them engaging in too much contemplation on "higher powers".  If God is truly all-knowing and all-seeing, He will know of your struggles; you just get on with living.  Also, don't put too much value into what other people say or think.  This is another area over which you have no control, so don't bother trying.  Do what you need to do to get onto the UNOS list (I'm sure you already have) if transplantation is your goal.  Don't waste your life just waiting for a new kidney; the trick is to find some joy and pleasure and purpose NOW.  It will go a long way if you also release yourself from unrealistic expectations.  I know that you grieve for the ability and energy to do things in the way that you used to do them (to their fullest and not half-assed).  The reality today, right now, is that your energy is limited, and your job is to plan your activities in a different way.  I get depressed when I see I can't do all of the gardening I want to do in one day, so to spare myself emotional distress, I map out ONE activity.., say, clearing the patio, and I do that and ONLY that.  The result is that I have a clean patio, a sense of achievement and more energy to do a few other things.  Another thing I have realized is that I get bored thinking about me, myself and I, and I get relief from anything that distracts my mind...reading, volunteering, going to the movies.  Small things, but effective.  Last thing...I've started seeing a therapist to help me deal with the stress and, particularly, the anger.  I've had only one appointment.  I am not sure she can help me, but she told me to work on identifying times when I am not stressed in the hopes that we can build onto those times.  I find that I am most stressed when I have some sort of procedure coming up...there are definite triggers.  Perhaps you can do the same...identify triggers and also identify islands of relative peace.  ESRD is so hard to cope with, and I know in my case, I am sometimes my own worst enemy.  I can't always change that, but I can perhaps learn to understnd that and to occasionally avoid it.

[RightSide]

I don't believe in a Santa Claus-type  God, who will make you well if only you pray and grovel enough. As others have said, God can't do that, but He can do some other good things--like give you the courage to go on.

Besides, look at it this way:  I don't have any prospective living donors, and my blood type is relatively uncommon (AB).  My only chance is a cadaver donor.  So if God wanted to "give me a kidney,"  He would have to kill somebody else! 

I prefer to wait my turn.

[tyefly]

Jdwells83.........     I think you said it all perfectly for all of us........     Hope in the true meaning....... is what all of us dream of.......not just because of CKD but for manyother  missfortunes .....   

 You answered own questions............   

    To look for hope and to always move forward towards our dreams.......   that to me        is the meaning of life.......     and what we all should do everyday.........   that is the right thing to do......  its in your heart.........  Trust your heart........

[MooseMom]

jdwells, what are the hopes and dreams that ESRD have denied you?

[jdwills83]

I have hearing loss because of ESRD, I studied to be a surgical tech for a long time and when it came down to the end when I got to be in the OR... I couldn't hear anyone, even with my hearing aids.


my immune system was depressed and it made no sense for me to be working around sick people all day anyways.


I went to LA to start over and had to come back because of my kidney failing, I was up for a promotion at my job but I could not work out the hours, the energy, the health insurance...to continue

ESRD has denied me a lot of dreams.. I never said I had hopes.

[MooseMom]

Life is filled with people whose dreams have been dashed for all sorts of reasons.  Those who are more resilient find more realistic dreams and strive to make them come true.  My son is autistic, and I got sick of hearing about all the things he could not do.  That was only half the picture.  We had to concentrate on the things he COULD do.  This goes for all and any of us, really.  I'm sure you have at some point spoken with your social worker; have you ever had conversations about what you CAN do and how that can translate into a fulfilling job or vocation?   

[Quickfeet]

You have to find ways to be more efficient. I watched how "old" people do things. I watched a group of church volunteers do some demolition at their church. The young men did a lot more physically than the one man in his 70's but when it was all done he had accomplished as much as any other person there. He worked smarter not harder.

There are many things out there that are worth doing but aren't so physical. Try brainstorming about the things you like or are interested in learning more about. Then go through the list and see if there is something you want to try. Some times it takes running out of options to discover the options you never realized you had.

I am on the fence about God. Assuming God exists here is a possible glimpse of his point of view. Earth isn't paradise, how can we demand everything to be great? What is a hundred years of suffering compared to an eternity in heaven. There are about 6,828,839,270 people on earth, how can we demand God make each individual happy? If there was no suffering how could people learn and grow? I could give arguments against as well but I think you already have enough of those.

[marcy996]

I am on the fence about God. Assuming God exists here is a possible glimpse of his point of view. Earth isn't paradise, how can we demand everything to be great? What is a hundred years of suffering compared to an eternity in heaven. There are about 6,828,839,270 people on earth, how can we demand God make each individual happy? If there was no suffering how could people learn and grow? I could give arguments against as well but I think you already have enough of those.

Thank you quickfeet for saying what was on my mind. It seems to be an unpopular belief here but I believe in God and the comfort He brings me as I continue to live with the effects of ckd. When people tell me to pray that my kidneys will be restored I know it is unrealistic but if they tell me they will pray for me to find strength and courage I find comfort. I try to live for what I have today. I normally try to avoid discussing religion and politics but your comment touched me. Thanks.

[KICKSTART]

I dont believe in God, but i do believe in Heaven and Hell. There has got to be a Heaven , because i sure am living in hell right now.

[Stoday]

Hey KS AKA Bellissima —
Say hello to the Duc de l'Omlette for me   

[jdwills83]

thank you all for your opinions, I am now trying to work with the Mayo Clinic and a local hospital here with maybe getting my blood desensitized to I will move farther up on the list and I also have a potential living donor as well.

and all I had to do was start trying to improve my situation, do a little research, talk to family and friends...

things are looking better already!

[MooseMom]

So, I guess the answer to your original question is yes, there was more that you could have been doing; you did those things, and now things are moving in the right direction for you!  Superb!

[kitkatz]

http://ihatedialysis.com/forum/index.php?topic=416.msg2497#msg2497


A link to something I wrote a few years ago similar to this post.