You need Michael Jacksons oxygen bed.

Understand. Neurogenic. Difficult case.

SO on edge today.
I'm fucking SICK of being in pain all the time.
The weather has been bad EVERY DAY for a month, without break and I am getting worse every day.
I am always in pain and always have been and it seems like it has been coming to a head and wearing on me until today.
Every muscle, movement, breath, moment hurts, just hurts.
I don't know what to do.
I'm really at my wit's end. I feel like a failure as a father for feeling this way.
Weak.
Since our insurance has changed I have been unable to go to therapy and though all I did was go and talk (he is not invasive at all, just encouraging. Mostly I talk about stuff, what I am trying to do and my hopes) it seems like since them pressure has been building...
Since I have been feeling worse, since the stroke, recent heart and new kidney/bladder problems I've been avoiding talking to my family about anything as well.
There is something else I have not discussed with anyone.
Since some of the recent diagnoses my wife has become distant, she admits it, but it is hard on both of us.
I can't seem to stop thinking terrible thoughts.
I want to be the best husband and father I can but I am in so much pain... it is becoming hard to think clearly.
I know there is nothing you guys can do, but you really are my only link to the world, the only people I talk to any more in any real way.
So sorry for laying this on you....
I don't blame you if this goes ignored. There is nothing that can be done, this is my lot and I know I am still more fortunate than most in the world, I know that in my heart and try so hard to keep that in the front of my mind.
I feel so weak right now for letting this get to me, but it hurts SO MUCH I am overwhelmed and so lonely sometimes, even with my family here because they are afraid to even mention it now. I don't blame them, not at ALL.
We watched my grandmother die for 13 years and I know that they feel this again.
No mother and father should have to go through what my parents are going through and then have the added burden of having to talk to me about it.
I am lost.

There is nothing weak about accepting reality and dealing with it the best way you can.
I imagine you're trying to, "grin and bear it", but be careful not to shut out your wife in the process. She's your best friend and closest ally.

I think the opposite is happening. She is becoming very distant, emotionally.
I do try to do my best to be strong and ... I don't know how to describe it, but not put this on those around me.
It is hard enough on them.
Thank you for your kindness.

First off, rk, don't feel sorry for "laying this on us." Compassion doesn't need that, and I, for one, feel more than compassion. I actually admire you for working so hard and dealing with so much. I truly can't imagine what I would do were I in your shoes. I hope you can also get past feeling weak; if your situation didn't get to you, you couldn't be human.

I really do wish I could do something to help you. I can't stand seeing anyone or anything in pain. This case goes beyond that general rule, though. You have brought smiles to my face and given me interesting points and viewpoints to ponder; I am a bit better person for having had even this much interaction with you. I hope you can find some help; my prayers are with you.

Thank you for the compliment.
I just wish I could explain it.
Nothing has really changed... I just don't feel my normal ability to deal with the pain in the last few days.
My jaw and the area around my ribs swells so it hurts when I breath, eat/swallow and my ears hurt a lot (among other things) but these are wearing on me and making me nuts.
They are not even, remotely, the things that hurt the worst on me.
I feel like I don't know what to do.

rage, I'm glad you felt you could talk to us about it at least. But, you know, bruce is right, be careful not to protect your wife too much from this.

You refer to 13 years of watching your grandma die. This is not what is happening. Your family are watching you live. They are watching you live with pain, but live nonetheless.

If you ever feel that sharing with a 'stranger' might help, PM me. (or indeed any of the dwellars, I suspect)

that sounds horribly wearing rk, you must be ready to bounce off the walls with that.

I think I at least understand how some of the less painful things can wear on you, rk. Damn, that is a bitch. Your frustration over it all must only add to the problem. I wish I could provide some answers instead of just stating the obvious. All I can do (at least for now) is listen, but I certainly am glad to do that much.

Honestly... I want to... but, I don't know what to say any more.
I hurt, I hurt, I hurtIhurt?.... there are other things I am afraid to give voice to.
Perhaps I will, but not now.
Thank you so much for the offer, I may.

Consider this. Your wife knows you're doing your best "not to put this on those around you", and is trying to help you do just that, by avoiding the subject. Pushing herself away to make it easier for you. To you she's becoming distant. If so, that's rough on her also.

Obviously I don't know shit, just running it by you for consideration.
but you might try opening up, just a little, and see if she shows signs of wanting to go into it deeper.

It's a fool, that plays it cool, by making his life a little colder.

I am very open... she will not discuss anything with me now.
This is VERY hard on her. I am really the only person she ever trusted completely.
Long story, but, she was abused by her father, had a difficult relationship with her mother, I was there for her when she had ovarian problems and a brain/pituitary tumor, she is healthy now after all of that and we are best friends as well as married. She did not trust me enough to want kids until we were together 13 years. Right after that is when we found out about my back... then every thing else, a little at a time.
I think once my liver, heart and kidneys started to have problems was when she started to pull away, the stroke was the last straw... she is really scared.

With friends and relatives who are living through long term illness or pain I have always been guided by them in whether or not it is a subject of conversation - sometimes they'd want to talk about it, other times they'd want to talk about anything but ... I imagine your wife might feel the same way, as Bruce has suggested, and is avoiding the subject for your sake because you are avoiding it for her sake.
It sounds to me as though you have a very strong relationship, and it will be hard for her to face up to major changes in your shared life; are you able to help her come to terms with those changes ahead of time by talking to her and helping her to plan ahead?
And there is no shame in feeling scared - it's a brave man who can confess that he is scared and needs help. But surely you know that rk.
This is the only thread in the Cellar which I have tagged for new post alerts, because I want to know how things are with you, and because even if all I can do is read your posts, I want to be here for you.

Sorry I've been gone for a while. I got a lot worse and have been unable to move from my bed, and even get on-line in bed for the last few days. It is still storming here.
I am a bit better today, even had a pipe earlier.
Talked to my wife some, told her that I want her to get out with her friends from time to time and get away from this situation, get out. She agreed that we need to talk and that she needs to deal with this more openly with me.
And I have to get out too.
I used to go to my local tobacco shop from time to time, they have recliners there. It is hard for me, but something I enjoy and should do.
Financially we are going to have to finagle a bit to make these things happen, but we need to.
I think the main thing is that I am getting worse a LOT faster than she was ready to deal with, than she expected.
She misses our life, she misses who I used to be and she is going through a mourning period... that I am here, and so sick is making that even harder.
These last few days were so hard in many ways.
Finn kept trying to make me better, it was heartbreaking. I can't talk about it really. My parents are going on vacation for their anniversary and want to cancel it because of the last few days.
I don't know what they think they can do?
What I think everyone's fear is, is another stroke. I passed-out last night when I tried to take a bath. I think it scared Kan pretty bad.
I hate this so much.

Glad to hear you'e a little better today rk, but damn that sounds like a bitch of a few days.

Your little boy sounds like a real sweety.

Keep fightin' rk, try and get to the tobacco shop if you possibly can.

X D

Thanks. I hope to be able to get out of the house soon. If this weather will let up I should feel a bit better. Until then, I abide.

Glad you're communicating with the Mrs. That's the most important thing.

Hang in there rk - I'm pullin for you.

I honestly don't know how to put this, I've been in this house descending into more pain, with more spasms, eating and sleeping less every day for a month.
Been in this bed, in this room, other than one trip to my parents across the street, which nearly put me in the hospital, that entire time.
Every day I keep thinking "tomorrow I will go outside, to the tobacco shop, to see Harry Potter, to play with my son for a bit, ANYTHING", but it just rains more and the barometer just keeps moving...
My son is at my mother-in-law's and I am encouraging her to keep him all of this week and my wife to go out with her sister tonight and to stay with him all day today.
They don't need to see this any more than they have to.
I am LOSING it and feel... this is hard to admit, but I need to get it out... I don't know how much more of this I can take, I need the weather to change. I honestly don't know how much pain the human body can take.
My chest, jaw and ears are killing me still. I am very worried about having another stroke or heart issues.
Again, I am sorry about griping about this again...

Don't be sorry about "griping" ... the cellar is a great place to vent, and people with far less to complain about than you have taken up far more space doing so.
If the internet is all the space that you've got at the moment, then use it any way you hoave to.
I hope the weather changes for you, I hope the pain eases for you, I wish you the strength to bear your troubles as you would wish to.

rk, that's horrible. I have no reference for the kind of pain you must be in, so can only imagine. I do have some experience of being confined (by illness) to bed for a long and indeterminate length of time. Each day hoping the next day will bring some kind of change for the better. This is probably the only part of your situation that i can genuinely get a handle on, and even then it's totally different to my own experiences.

I'm glad that you have a place like the Cellar to come and vent. Virtual friends are still friends and we are hear to listen, as well as to cotinue arguing the toss with you in other threads. :P

S'funny, this little Cellar community, gets under your skin. The other day I was walking through town and, can't recall what line of thought/external event provoked this, started thinking about my friend, L, whose drugs recently had to change and is nowhere near as well because of it and also very down. As I was wondering how she's doing, I also found myself wondering how you were doing (rk). Just briefly, before my thoughts turned to more self centred topics *grins*.

So there you go. Virtual friends and the global village....it's a thought isn't it? Keep venting, rk, we're all mates in here, even those who don't get on. We do care, we are interested, we will still call you out in political discussions. If virtual space is all that's available to you right now, use it as you need.

I liked your last para there Dana. It's so true. ;)

Rkz, I can't add much more than everyone else has already said, but you know I'm always around at about the same time as you seem to be, so pm me if you like. Just no politics in the pm's though ok? :)

I think you're doing the right thing by encouraging your wife to get out of the house sometimes. She needs to keep herself mentally strong for you and your son, but if she doesn't get any let up, that's going to be hard for her to do.

What your parents decide to do is their decision matey. Don't burden yourself with their choices. What you think they should do probably wont make much difference to what they will do in the end. Just let them love you the way they need to. They will never begrudge you anything.

Hang in there. We'll be hanging with you.

The last gripe for a while... my son looks at me in the hospital and tells me he does not want me to die.
I don't even know how to deal with that.

Tell him you'll do the best you can.

S-basically what I said.

Death should not be feared. Death is peace. Death is relief. Death is rest. Death is rebirth.

Surgery had some complications, but went pretty well, overall.
Healing slowly.

*sends healing energy to rk*

Glad to hear the surgery went well rk.

Another infection and five lodged stones between my kidney and my bladder.
I'm going to have surgery on Monday, again.
I am so fucking sick of this!
I really, REALLY, want a LOT to drink right now.

Shit rk, that sucks. :(

It helps with spasms, nausea and hunger, not this.
Thanks for the well wishes.

Crikey, talk about a never-ending struggle

You play the hand you've been dealt with remarkable elan, RK - I hope things start to improve for you

I do too, thank you.

Me too.

I hope I make it to Monday. I am having trouble going to the bathroom and the pain is getting worse.
Took some meds, so I won't be getting any sleep tonight.
Pulled an old Sci-Fi collection to start on, 50 top short stories, old ones.
I can't read, can't focus. This really sucks.
Tomorrow is father-son olympics day at my son's school... my dad was going to do all the activities with him I could not do, but I want to go and do as much as I can.
If I can't I am going to be PISSED.

I'll send out vibes for you rk, hopefully if I think hard enough..it'll help.


(ya never know, it could work)

Did not go with my son. Spent the morning passing a large stone.
Not the stones they are going for on Monday, just got back from the hospital, pre-op (labs, x-ray, urine, EKG, etc). LONG day.
Dad says I would not have been able to day anything they did anyway. Still would have liked to have been there to cheer them.

Sorry you missed out on that. I am sure that hurts in a different way. I hope all goes well on Monday.

Thanks. I have a great doctor, so I have confidence it will. I can deal with the pain.
I don't mind admitting I am very depressed right now. Fighting it though.

Any chance a dietary change can put a stop to the damn stones?

I have done all I can, they are calcite from my bones disintegrating and the fillers from my pills.
I don't drink any milk, eat very little dairy and lay off heavy proteins... all I can do.

Shit Rk, how frustrating for you not to be able to take part in the Father/son sports. Let us know, when you can, how it goes on Monday *hugs rk* I'll be thinking of you.

So sorry to hear that you couldn't be there at your son's sports' day. Hoping the operations go well. Hugs from over here, too!

If I can't come home I'll be sure to ask Kan to let you guys know.
Thanks for all the good vibes, etc. It means a lot to me.

Good luck, I hope it reslts in you being more comfortable.

I'm home.
They said it was the size of a "candy corn" and could not pull it out.
When I came to they kept me under observation until I passed some of it.
I'm bleeding quite a bit, so I'm on antibiotics and straining until I've gotten it all.
Pretty uncomfortable now, but I'm sure this will help me in the long run.

My eyes are watering for you
Chin up

Thanks.
Just passed part of it. Going to be a long few days.

*don't get offended but*

JHC!

I have personal experience in this area and I weep for you. No, I weep for *me* that I have similar plumbing that is at risk of a similar problem. JHC, Man, that's what they make lithotripsy for, ain't it? We men don't, uh, have the same elasticity in the genito-urinal tract.. Please... smaller pieces, please... *whimpers, shivers*..

good luck bro.

I have only sympathy to offer - ouch!

I had a BAD night, I feel like I've been kicked in the gut a dozen times.
This fucking SUCKS!

Lot better today.
The last few days have been pure hell.
The procedure really set-off my back and hip.
Thanks for all your support.
Still have not passed the pieces though.

Glad to hear that you're feeling better - hope that lasts for you!