jc, this is an important topic that many of us live with quietly, not discussing b/c it is uncomfortable to others.
i've tried to put every measure into place since i don't trust my immediate family to respect my wishes.

like you, i just won't spend more time in the hospital being poked and used as a guinea pig with trials - my personal choice. not to say i'm giving up b/c i do as many things as i can to help myself, but i have no desire to push things.
i know that your condition is more severe or whatever is the right word is.

esp seeing my father in his current state, i have a greater fear of lingering than of just crossing over.

it's sad that more of us don't have a good family support network, but i do have some dear friends who would step in and...whatever.

My biggest fear right now is the fear of the unknown. I'm afraid of living like this, suffering needlessly in severe debilitating agony alone. All the Dr's. can do is try to manage my pain. Nothing works good enough or long enough. I'm grateful for the good days which are now once again few and far between. My affairs have been in order since 2007.

This is hard for me to talk about. The only person in my life that genuinely cared about how I felt everyday passed in 2010. My daughter doesn't care, my dad doesn't remember from day to day how sick I am or how much pain I'm in all the time. He refuses to go to an assisted living community. So I keep trying to take care of him everyday. I wish God would take me now, that's a daily thought. I know everybody would be ok without me.

I feel so selfish and depressed right now. I keep wanting to hit the cancel button. But I'm not going to do that. JC thank you for sharing this topic.

Healing hugs to all

Definitely a thought that I believe crosses all of our minds at some point..

I know how you feel - In the past year or so, I've been found to have conditions that, if undiagnosed, would've paralyzed and eventually killed me. I've actually been thinking about it a lot and it kind of scares me. Things like what us and I'm sure a lot of these other people go through can lead to some serious questions.. Sometimes I just wonder why and how I've made it.

With everything that's happened (a tethered cord, a long syrinx, the severe stages of Celiac disease and IIH, osteoporosis, fibro, and now possible RA and a re-tethered cord,) there's no way to know if I will get better or worse. Unlike most other people with these problems, I'm still growing - I could get better, or get way worse. So I just have to live every day in fear.. I get new symptoms usually on a weekly basis and 75% of the time I go to the doctor, they diagnose me with something new and increasingly terrible. At the moment it's looking like I'll need another spinal cord surgery.

I've faced death and am at least away from it now, although at times I don't see how I can be in so much pain and so medicated without being dead. :/ And it seems funny to me how people can stay dedicated to their faith after so many horrible things like this happen to them.

Fayre - wow! Your the first person I've met who is neck & neck with me in number of surgeries. I stopped counting close around 75. That was more than a decade ago with many since.
Do you find it worse each time? Like CP, i know exactly how I will hurt, recovery length ... and family has decided I am "used to it by now". So they blow me off even tho every surgery carries risk.
Glad to met you.

Serenity - I agree with you AND JC about being prodded. And poked. I am weary of hearing, "this won't hurt a lot"
Right .. then let them be poked, stabbed and prodded. Leave me alone already

Good topic NC
Really needed- thank you for caring so much
Sunny

I have had my affairs in order for some time now. I've said whatever I felt needed saying to family members. I have to admit I fear kidney failure. A nurse once told me that once the kidneys go it's like a domino effect and everything else just follows.

My youngest is 17 now but she is sure not ready to be on her own for awhile yet. But the truth is I worry most about my husband. He's an extreme introvert. I just can't imagine leaving him on his own.

I know that I'm a fighter and hope for many years on dialysis. Both of my parents had long drawn out battles with disease so I fear living in a state of constant illness. But still would prefer to be around to make the best of what life has to offer.

I missed the thread somehow..oops

I too know that my life is shortened by one of my diseases. It's odd that I began thinking of it so very much more recently, then clicked onto this support group and found you.
Thanks.
I've a bad infection right now, so I am quite tired. I'll be back to talk about what you've written and how you feel. It's such a relief to be able to openly discuss these feelings and share our collective knowledge of what is ending our lives ~ oh, I don't really know, but is "sooner" the word I'm looking for?
I love the way the words you're feeling jumped out at me. You speak in gentle tones with strong feelings within them from your heart. I am, indeed, one of "those who might need it". It's nice to meet you, jc.
Again, thank-you and I'll be in touch if that is alright?
Hugs, too, to you.

Wonderful topic JC, and something that been rolling around this froggy brain...

Hmmmmm, had the serious discussion with a couple of my Doc's in the last couple of months... Been reclassified as Mixed Connective Tissue Disease... with Lupus and Systemic Scleroderma as the nasties... things have gotten pretty serious with organ and blood vessel issues... Sigh...

I have a wonderful family and no commitments or people to hurt when things go belly up, for that I am truly grateful, I really feel for those that don't have the support or understanding...

Christmas was an eye opener, was a bit worried about the keep up and don't "understand"... pressure was going to be on, my family have all read up on my condition and have been awesome with what going on health wise.... was totally looked after and spoilt over Christmas... 8-)

Guess I am OK with what's going on health ways, there is no cure, just try and manage the symptoms and plod along day by day. Like a few of you, I am totally over the continual testing, poking n prodding and treatments that generally, make me feel worse trying to gain a couple of years....

Think I am finally happy with just accepting the now and trying not to worry about the lack of future or disease progression... all is in order for the next phase of life..

It's great being apart of this group, helps give me purpose and appreciate how many wonderful people are out there battling along with some pretty rough health challenges...

So thank you all for being Awesome and for your support, you all mean the world to me.... and , so appreciate DS and the Cp board... brings a lot of light and happiness...

Huge Hugs and Sparkles ..... xoxoxox

Thank you all for your very honest replies.

I know this is a hard thing to think about..let alone talk about..
But..feel like..if we can't here..
Well..where?

I don't want to do individual responses..I'd feel terrible if I missed someone. I just really appreciate being reminded that nothing we feel/think/experience is something that someone else here hasn't , too. And..having a " safe" place to talk about...anything involved with CP.

Hugs...and hope...to all of you.
jc

Jan a great topic. Seems like we have dealt with too many drown out, painful led deaths in my family in the last few years. Each person had a different view on end of life.

My fil fought cancer for over ten years and held on to every day. We found his hunting license after he died, still don't know how he got out of the house to buy it but he was going! My mil was on dialysis for almost ten years. Then spent almost six months in the hospital. She fought and fought and I swear she stole a few extra days :)

My dad lived twenty years with various heart problems. Then dementia set in and things got bad very quickly. Dad never feared death and in the end when he was in pain he asked daily if he was going to die that day. Now mom has dementia. The doctor told her this and asked her what she was afraid of...was she afraid of death? Her answer was she is afraid that she won't be able to play billiard a again..lol.

What struck me about each experience is that they had such different feelings about death and life. Not sure which way I lean. But I do know it is critical to have your legal affairs in order. And most important to have a health care proxy who will be willing and able to carry out your wishes if you are not able to make decisions. Talking about these wishes is important.

As the saying goes "the only thing certain in life is death and taxes"

That is what is so special about DS, is that we can discuss what we need to and there will always be someone to support us, to listen, and to understand. I hope you have a much better 2013 then you did in 2012. I have CP and other problems as well and sometimes I don't know where to turn. I am grateful for DS, that I know for sure. Hugs honey. GB

I can empathize with Meandmycritters, its not the individual illnesses, but all of them together is what causes the despair. As JC did, I spoke with my family about what to do if things go bad. It scared them, but I was at a point that I really thought it was the end. Doctors and I are playing the waiting game with a few issues, but things I was told to watch out for are starting to happen and I'm now worried. I'd like to say the thoughts haven't come back.

Hopefully, I'll live a good while longer. But being as sick as I have been, I decided to take it one step at a time.