Purpose

[LightLizard]

thanks deane. this place is the best prescription for the dialysis blas there is!
i've found that the journey on this path-without-a-kidney requires a lot of heart.
one of the challenges. for me, is that i seem to have received a spiritual lobotomy...
i have become more cynical and perhaps less compassionate than i once was.

still workin on that...

love

LL

[BigSteve]

LL, thanks for having the courage to bring up this topic. I often feel the way you do, but I don't
have your courage to write and talk about the depression. Thanks also to all of you for your
responses. They make me feel better about this situation we're all in.

[kellyt]

 

[angela515]

I wish i could offer some words, but I don't think I've ever felt this way. However, I offer my open arms and an open ear. 

[Romona]

LL, thanks for having the courage to bring up this topic. I often feel the way you do, but I don't
have your courage to write and talk about the depression. Thanks also to all of you for your
responses. They make me feel better about this situation we're all in.

We just have to be here for each other. My emotions are like a rollercoaster. At least you guys know what it is like. When I read the posts at least I know I am not alone and others have doubts and bad days too!

[LightLizard]

ramona, steve, kelly and angie, thanks for sounding in.
knowing that we are not alone on this bumpy road is such
an important truth, and so easy to forget in the midst
of aches and pains in the dark of the night.
we who walk this path may stagger and run out of steam,
from time to time.
other times wondering if the journey is worth the effort....
but this, i know...
i don't know how i know this, but i know i wouldn't know it
without all of you and your words of support and love;
it IS worth the effort.

namaste

[lola]

 

[Mimi]

LL please don't let bitternes overtake you.  Chronic sickness will always change you.  How it changes you is your choice.  Bitterness is like drinking poison and hoping someone else will die.  It's a long hard fight, if you can't run, walk
If you can't walk, stand, but never,never quit. It is what it is, we must accept it.  We
don't like it, but we must deal with it.                                                                                                                                                                                                                      

God Bless You,
Mimi                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

[BobT1939]

An enormous THANK YOU to Light's wife for her post. It made my day./bobt

[LightLizard]

back at ya, mimi and bob.

don't worry mimi. 'cynical' is not necessarily bitter, or a bad thing either.

did you know that the word originally described a branch of
greek philosophy?
the belief of the cynic was that the most valuable virtues one could aquire in life
were only available through self disipline.

i'm for bringing back that original definition.

 

[kellyt]

Sometimes cynical and sarcastic are all I have left in me.  They get me through the day.   

[Loretta]

Hi LL,

I have so struggled with what you brought up in this thread.  I want to share my experience with it not only for you because you have gotten lots of good feedback but for others who may have some similar feelings.  My one year anniversary of being diagnosed with kidney failure comes tomorrow.  It has been a year of some major changes in my life.  If I would have known on that day I was diagnosed what it would mean I would not believe that I have made it through at all.  
It was about June when I finally realized that I was not going to be able to go back to work.  Yes, I am a slow learner.  On top of that my daughter, that I had adopted five years before was having major mental health issues and ended up in Juvenile detention saying that she would never come back home to live with me.  I live away from most of my family.  I do have an aunt and uncle that live a few miles away but I have only really even known them for the last few years.  I slipped lower and lower until I was constantly thinking about suicide and I had a very workable plan, that I could carry out in a short time span.  I would not be brave enough to stop dialysis that would take too much time being too sick.  The major thing that first started helping is I decided that I had to hang on just with the odd chance that maybe my daughter may want to come home some day.  I talked to my doctor and changed my antidepressant to Effexor.  This helped a lot.  I put any energy I had into supporting and listening to my daughter whenever I could.  I started feeling a little better and then in September after my third surgery on my Kidney to get rid of some cancer I decided to start walking more.  It was slow and not easy and took a lot of patience but my strength grew.  My daughter also started responding to my love.  She went from Juvenile detention to a treatment center, and finaly came home in October.  She is a changed girl.  She is very helpful and suppotive of me now.  She still needs lots of support and help to stick to her treatment plans but it is a two way street now.  I got up to walking one mile twice most days.  I felt real good until just before Christmas when I had to have more surgery on my kidney.  Some problems came up and I ended up in the hospital the day after Christmas with a bad kidney infection, only to return less than a week later even sicker, with a kidney infection due to complications with treating the cancer in my kidney.  I have now been out of the hospital for 11 days and am starting to walk again. It is discouraging to have lost all my strength but I am now determined to build up to be able to walk five miles three days a week, on nondialysis days.  
Anyway what I am saying is, do talk to a good doctor about antidepressants and set some goals.  These goals become your purpose.  I have also started up some old hobbies and find a lot of joy in them.  I have spent time communicating with my family and letting them know that I am still very much alive and continue to work to make my life worthwhile.  You can do it.  Anyone of us can.  just set some small gaols and reach for them.  Get help with antidepressants if the doctor feel like that may help.  Then keep writing and communicating with other people that may be able to understand like those here on this list.
Loretta

[LightLizard]

yes kellyt, its the last defense, in a way, but it does work if we don't overuse it....

loretta, thank you so much for telling us your story! you are an inspiration to me.
i used to love walking, before dialysis, in fact, it was my main mode of transportation for most of my life. i never did learn to drive a car and walking was part of the health regimen that i followed for many years, along with my tai chi and qigong practice.
after being bed-ridden for 7 months, i lost around 75 percent of my muscle mass, and as you know, it takes a long, long time to get that muscle back!
 well, along with the fatigue of kidney failure and the psychological aspect, I have been pretty slack in my walking for the past few years. it just seems impossible to rebuild that old strength. i'm pretty much back to my pre-dialysis weight now, but the muscles are not exactly getting much work. you have given me a new goal with your touching words. i'll never get my old strength back, i know, but now, i want to do what i can to get as much of it back as possible.
i can't bring myself to ask my doc for anti-depressants. i don't think i've gotten to the point that i really need them. but as for walking, i can do that. thank you! and i am so happy to hear that your daughter is around and supportive. i'd be lost without my wife, and my daughters are one, (three, actually) of the reasons i haven't given up, and won't.

bless you and please do get stronger and stay happy.

love

LL

[Steve-0]

This seems to be a topic of some frequency amongst dialysis patients.

I know that I struggle with it constantly.  Before my diagnosis of End Stage Renal Disease, I was a carefree, wild, fun loving bohemian-wanna-be youngster who lived to stay out late and play guitar in a myriad of bands.  I worked on many different creative projects, and didn't worry about medical conditions.

Then I was attached to a dialysis machine - and I turned 25.  Life was different.

I started to think about purpose - what was I to do?  I had always counted on the future to take care of itself.  As I meandered through life, without thinking about a "career", I always figured I'd just settle down, get the job and get on with it.  I didn't count on kidney failure!

So - purpose - as I sat in my chair for hours at a clip every other day, the possiblity of ever working seemed to wane.  I mean, I wasn't supposed to feel so useless so young.

Now, it's five years later - I've been through one half-assed transplant and eventual failure (a whole other story) and a return to dialysis... and I still wonder about purpose. 

I don't have any definite answers, but I can see by the life around me that there's something.  I have amazing friends and family that have rallied to me over the years.  And though some don't understand the nature of ESRD  ("You're gonna be better, right?") they try.  And I see that they have something invested in me.  I know in today's society, we want to feel productive... but in the cosmic nature of things, your friends and family and the love you can invest in the are the greatest things you can experience in life.  Honestly - sounds like lovey-dovey, hippy-trippy out look, but nothing makes me feel better.  And, I do the little things when I can to make myself feel productive - I still play my guitar and record music, and I write whenever I get a chance.  I've also co-authored a computer game that's been downloaded hundreds of thousands of times and featured on TV! 

It seems to me you've got a lot going for you - so continue to keep that head up, and know there's plenty of us out there.  Good, worthwhile people who just happen to be dialysis patients too.  Someday, kidney disease will be better known in public (I don't know why I get so defensive about it, but it's just not as "chic" as say.... cancer or heart disease, is it?) and people will be more sympathetic to the cause.

Lots of great responses in this thread.


~Steve

[LightLizard]

thank you steve. you and i have been on similar roads, it seems. it would be nice to get together and jam, one day.

play on, bro!

love

LL

[MyssAnne]

I just now found this topic. I've been struggling with working full time while being sick. It's hard! Especially when the house is falling down
because you have no energy to work on it.  I just keep putting one foot forward. I admire KitKatz. I don't know how she does it some days.
LL, you are our poet, I've missed not seeing your posts lately.  I'm glad you're back on, and I'm gladder your wife is on now, too. 

[LightLizard]

i don't know how YOU do it myssanne! i barely have the energy, most days, to walk 2 blocks.
my wife is the real poet, i'm just a budding cynic (sorry mimi, heehee)-

i used to be schizophrenic...

but, we're fine, now.

 

[MyssAnne]

LOL!!! LL, I am glad you all are better now!!!  Gotta watch out for your better half!!   

[The Wife]

An enormous THANK YOU to Light's wife for her post. It made my day./bobt

You're welcome.

And thank you everyone who responded to this post with your warm words of inspiration and care.  LL's spirits are up, I feel lighter, and even though he didn't get out for a walk today, he did ride the exercise bike.   

AND....he did the dishes!  Unfortuantely, I came home and messed it all up again by cooking dinner.  Should I fill up the sink LL?   

[LightLizard]

sure! hop in.

i'll get the steel wool.

 

[The Wife]

 

[kitkatz]

The picture that floated through my mind.  I need the steel wool now! 

[Romona]

An enormous THANK YOU to Light's wife for her post. It made my day./bobt

You're welcome.

And thank you everyone who responded to this post with your warm words of inspiration and care.� LL's spirits are up, I feel lighter, and even though he didn't get out for a walk today, he did ride the exercise bike.� �

AND....he did the dishes!� Unfortuantely, I came home and messed it all up again by cooking dinner.� Should I fill up the sink LL?� �

You are an awesome wife. The more dishes the better he'll feel. 

[LightLizard]

yeah, but i don't need to feel TOO good, y'know. my sensitive musician-fingers get wrinkled and slippery and i might drop a dish.
 

[Romona]

Oh yeah, I forgot. I guess you'll have to do laundry, run the vacumn and mop the floors. That stuff will toughen up those musician fingers back up after you are done with the dishes. See I'm looking out for you. Your wife doesn't have to thank me. It is my pleasure to give you advice.