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Can I whine a bit?


Square Wheels

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Not looking for sympathy or suggestions, sometimes I just need to vent.

When I was with my ex and complained of an ailment it would drive me nuts when she'd say "try having a baby if you want to talk about pain".  That may be true, but I still had my ailment.

Then I think of the pain scrapr is going through, and LJ, and I'm sure many others.  That is unimaginable to me.  My pain cannot compare to that.

Yet still, I have no idea how I make it through each day.  Over the past 17 years I've had bladder pain that has gotten progressively worse.  It used to be I'd need to pee urgently every few hours.  Now it can be as bad as every few minutes.  Sometimes it's just urgency, sometimes it's just pain, others it's both.

I skip out on so much in life because of it.  I won't fly in a helicopter or small plain because there is no bathroom.  I won't commute by public transportation, same reason.  I was going to go with a friend to the Bruins tonight (she even bought tickets), but they are not end seats, so I can't go.

Rarely it's debilitating.  Lately it has been debilitating more frequently.  It's not impossible I have a kidney stone now, that really hurts.  I see a urologist tomorrow.

I've done everything I've been asked.  I have tried at least 20 different drugs, probably a lot more.  I've seen at least 5 urologists, I've lost count.  I had (unneeded) prostate surgery.  I've had Botox injections in my bladder - twice.  I've been to a chiropractor, acupuncturist, physical therapist that specializes in pelvic floor pain.

I have tried diet restriction.  Almost no citrus, ever.  No alcohol.  Limited spicy food.  I'm even vegan because I heard that animal products may cause inflammation  Still feel free to give me crap about being a vegan.

So many days are just filled with pain or anticipation of pain.  I can't do anything sustained for more than an hour at most.  When I ride a century I stop at least 20 times to pee in the woods.  A friend ran a marathon.  She said she worked really hard on balancing what she drank with how much she was sweating and didn't pee once for the whole run.  That is so foreign to me.

I have not slept through the night, not once, in almost 17 years.  I get up at least 3 or 4 times, some nights it's 15 or 20.

I'm having a hard time believing that life is good and worth living.  Last night the pain was insane.  The wife and I went out to an event.  There were friends there.  I had to be rude and say, nice seeing you, I gotta go.  Home was only 10 minutes away, I thought I was going to die.  If I was handed a gun last night, I would have used it to end the pain.

I hate life sometimes.

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Just now, AirwickWithCheese said:

Better days are ahead. 

So far, nothing has proven this to be true.  No sleep, contrast pain, limited fun in life.  The length between the time I need to pee has dramatically decreased.  It's embarrassing leaving a 1 hour meeting three times, especially if it's my meeting with hospital big shots.  The pain is increasing in intensity and duration.

You'll never know I'm gone.  One less vegan in the world.  

I can be replaced by a bot, I'm working on that now.

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My only suggestion would be to keep looking for the doctor or doctors that can properly diagnose and treat your condition.  It may be very rare, but you can't be the only one ever to be afflicted with these symptoms.  Maybe it is a combination of ailments and that is what is making it so difficult to diagnose.  Don't give up.  Maybe you have to travel across country or even to Europe, but there has to be an answer.   

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This is a tough subject. I guess urology and actually medicine in general are still not totally exact sciences. It is sort of depressing that you work at or near one of the top hospitals in the us and they couldn’t fix it. 

It would be interesting to see how they could handle that in 100 years. I really think a lot of progress will be made in the mind body connection soon. Be the ball!  Sometimes I have urgency but I can make it go away.  But not always!

Drugs are probably the best bet. I am taking a drug unrelated to the bladder but a side effect is urinary retention.  But I think it has also reduced urgency which used to be a real problem for me. Caffeinated coffee definitely aggravates it, and switching to decaf has really helped. After I got a uti I got scared and tried two different urologists, but I didn’t like any of them and gave up on them. Still not ideal since Utis can be very dangerous. 

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26 minutes ago, Square Wheels said:

So far, nothing has proven this to be true.  No sleep, contrast pain, limited fun in life.  The length between the time I need to pee has dramatically decreased.  It's embarrassing leaving a 1 hour meeting three times, especially if it's my meeting with hospital big shots.  The pain is increasing in intensity and duration.

You'll never know I'm gone.  One less vegan in the world.  

I can be replaced by a bot, I'm working on that now.

I am praying for you To have a supernatural healing. 

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Oh dear, I am sad for you. I am on my third UTI in two months, yet I cannot fully comprehend how bad it is for you. While not pleasant to think about have they ever suggested a collection catheter for a few months to see if that makes a difference. There have been real advances in the bags and underwear and it isn5 as awful as it sounds. At least it means that you could stay somewhere an hour.  You are still freaky as a vegan.  

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You said you're not looking for sympathy or suggestions, but I am very sorry you're having to go through this.  I'm impressed that you do as much as you do given the factors you are dealing with.  I wish there were something we could do to help.  I understand that you're at one of the top hospitals, but if they can't help, consider at least trying another one. I'm sure it's discouraging, but I understand medicine is often just  a series of ruling things out and trying different things until they eventually find a remedy.  Plus new medicines and procedures are being developed all the time.  I"m pretty much a medical expert because I sometimes listen to Doctor Radio on Sirius.

But I am truly sorry that you are dealing with pain and the other impacts on your activities.  You are a good man and I wish you peace.

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49 minutes ago, AirwickWithCheese said:

Anyone else annoyed at Wheels for not sharing this with us sooner? That is *what families are for and we love Wheels at least the majority of the time. 

*except SisCheese who obviously could care less about me. 

He has shared about it before but he doesn’t dwell on it.

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46 minutes ago, jsharr said:

Suicide is not the answer. 

When is this not true?  I'm not thinking about it (that's a lie, I think about it every day), at least I'm not likely to consider it.  Yeah yeah, I have a wife, kids, friends, family, but so what.  I have no life, or almost no life.  I live to pee.  I am heading home now due to the pain.  I will spend the night hoping it goes away so I don't need to cancel my gym class in the morning.  I'd love to be able to drink water, I can't.  That makes me pee the most.

It seems like an easy answer.  Not be morbid, just being honest.  Many days the only reason I am still alive is to make other people happy.  It stopped being about me many years ago.

45 minutes ago, Parr8hed said:

What about a catheter?

Being able to go isn't the issue.  I can pee, as others have mentioned, since the pain is constant, peeing offers a tiny bit of relief.  After the prostate surgery (again, unneeded) I had a catheter for a few days.  I still felt like I had to pee all the time and still woke a lot at night.

29 minutes ago, donkpow said:

Go mental. Hypnosis, etc.

Great idea.  I used to be the worlds most negative person.  I've done a tremendous amount of self-reflection and meditating over the past few decades.  It has helped me personally, a lot, but done nothing for the pain.

21 minutes ago, jsharr said:

I am a bit surprised that @Kzoo has not called dibs.

I need to create a will.  I can leave my stuff to someone.  Who wants it?  Guitars, lots and lots of tools, a new car (floating in a ship at this point) a couple of bikes, lots of electronic toys, a pretty nice camera and a couple of lenses...

Maybe I'll give it all to Goodwill. 

 

 

I think part of the reason I spend so much of my money is 1 - I have plenty (no I am NOT bragging), and 2 - I don't anticipate being around much longer.  People don't generally live long that don't get a good nights rest.  How about almost 2 decades of not sleeping.  Buying toys causes me brief moments of happiness, that's about all I can expect at this point.  I don't really care what others think.  I will drive my BMW proudly.

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Have you done a sleep study?  Since starting with cpap, I get up just 1-3 times per night now, versus closer to 10 before. I always blamed it on the need to pee, but I think the sleep apnea woke me and then my bladder chimed in with, “hey, now that you are awake, how aboot a nice pee?  You know you want to.”

I agree 1000% that you need good sleep, so you should do a sleep study. 

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3 hours ago, Airehead said:

 You are still freaky as a vegan.  

We give you crap about being a vegan because it is fun giving you crap about being a vegan.  Plus, you were a bit of a zealot and recent converts have messed up perceptions and all.  Also, is is crazy to a lot of folks  

You are right, everybody has pain of one stripe or other, yours is bad and you have every reason to vent.   I hope there is the doctor or mechanic at the end of the road that can fix this for you. 

Maybe things will improve if things get less stressful for you at work?

 

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First, I want your bike. Second, I prefer you have your bike and live. 

Ok, crazy thought- what about seeing a battlefield surgeon of some sort?  Guys get shot and live without all sorts of body parts, Shirley they have had bladders shot out of people and found ways to Macguyver a solution. 

 

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4 hours ago, AirwickWithCheese said:

You mean too much to us to talk this way. Sorry for your pain but there must be a solution. Better days are ahead. 

Plus, SpeedDemon is a dish. 

I couldn't disagree more. This comment makes you feel better at best. I just read his post and the guy opened up and spilled his insides. I don't think there is a silver lining here. He has every right to bitch and bitch he should. What he doesn't need is a bunch of unsympathetic crap dismissing his emotions or feelings as trite -- with a dismal attempt by an unqualified avatar to tell him that his 'attitude' is all wrong.  He's telling how he feels and you don't want to hear it.  Sorry Cheese but this comment was as hollow as I have ever heard. If his condition wasn't so serious, I think he would be in his own rights to tell you to fuck off. 

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On a totally unrelated note, homeopathy is an interesting practice. I imagine a very experienced homeopath might have an opinion.

I'm currently waiting for my new PCP to get up to speed on my blood pressure problem.  I have been doing some of my own clinical testing so he needs to satisfy himself that I have not created a problem. I get the month off while I wait so I am on my prescribed meds only. I told him I think the root of the problem is probably in my endocrine system. He responded by asking me if I worked in the health care field.

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1 hour ago, Dottie said:

I couldn't disagree more. This comment makes you feel better at best. I just read his post and the guy opened up and spilled his insides. I don't think there is a silver lining here. He has every right to bitch and bitch he should. What he doesn't need is a bunch of unsympathetic crap dismissing his emotions or feelings as trite -- with a dismal attempt by an unqualified avatar to tell him that his 'attitude' is all wrong.  He's telling how he feels and you don't want to hear it.  Sorry Cheese but this comment was as hollow as I have ever heard. If his condition wasn't so serious, I think he would be in his own rights to tell you to fuck off. 

This is one of these things where you need to understand the context, and relationships behind it.  I am not offended, not at all.  Even in the text he just sent where he asked for my wifes dress size, so he can buy her a conservative dress for the funeral.  I think he'll try to woo her that day.  Good for him.

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6 minutes ago, Square Wheels said:

This is one of these things where you need to understand the context, and relationships behind it.  I am not offended, not at all.  Even in the text he just sent where he asked for my wifes dress size, so he can buy her a conservative dress for the funeral.  I think he'll try to woo her that day.  Good for him.

People believe you when you post this and want me hanging from the rafters. I will say again, you are a wonderful person and very important to all of us here. 

That being said, I must give you a warning point for the unauthorized changing of my avatar which is completely against SWF policy.  :)

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6 minutes ago, Square Wheels said:

This is one of these things where you need to understand the context, and relationships behind it.  I am not offended, not at all.  Even in the text he just sent where he asked for my wifes dress size, so he can buy her a conservative dress for the funeral.  I think he'll try to woo her that day.  Good for him.

Then I owe him an apology. I was surprisingly reactive with my own crap in the world going on. Please accept my apology @AirwickWithCheese. I was a little jumpy. I just have empathy for our friend Wheels 

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1 minute ago, AirwickWithCheese said:

People believe you when you post this and want me hanging from the rafters. I will say again, you are a wonderful person and very important to all of us here. 

That being said, I must give you a warning point for the unauthorized changing of my avatar which is completely against SWF policy.  :)

But it's true.  If I were to succumb to an unfortunate accident, my body would not even be warm before you moved in on her.

As for the avatar, 1 - there is no such written policy, 2 - nice choice  It would make me happy if you maintained it for 14.7 more hours.

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1 minute ago, Dottie said:

Then I owe him an apology. I was surprisingly reactive with my own crap in the world going on. Please accept my apology @AirwickWithCheese. I was a little jumpy. I just have empathy for our friend Wheels 

Thank you, no apology needed. Wheels is the only thing important in this thread. He is a great guy. 

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3 minutes ago, Square Wheels said:

But it's true.  If I were to succumb to an unfortunate accident, my body would not even be warm before you moved in on her.

As for the avatar, 1 - there is no such written policy, 2 - nice choice  It would make me happy if you maintained it for 14.7 more hours.

I will maintain the avatar for as long as it makes you smile. And yes you are right about me moving in on SD.   :)

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2 hours ago, Square Wheels said:

I think that's all that's going to work.

...if you get to a place where you want some insights into my own experiences with pain, and what seemed to help, let me know.   I don't want to come off like your ex.  However, I do have some experience with longer term, intractable pain, the kind that dominates your entire waking life (and your sleeping hours as well), and that eventually has you looking out on the world through a sort of grayish fog that colors everything.

Not saying anything that worked for me would work for you, but there's stuff you can try that does not involve getting it through a doctor.

The sad truth is that like a couple of people have already said, there are vast gaps in medical knowledge, and they get stretched out into wilderness areas by the time you translate them into medical practice. You work in a hospital, so this is not news to you.  The good news is that the body/self is pretty resilient.  My instinct is to tell you that you seem to be ignoring stress as a factor in all of this.  Which is a big mistake.  Huge, in fact. The other thing that strikes me from our somewhat irregular communications here is that you seem to be focused on western medical solutions. They're great when they work. When they don't work and you've explored a lot of them, it might be time to increase your limits of the possible.

 

The sorts of work stresses you regularly describe here would probably make me sick again, too.  So you might need to prioritize what's important as you work on  this problem.  Just a thought.  You didn't ask for suggestions, so I tried to make it sound like it wasn't one. :) BTW, nothing that goes on this long is usually fixed in a week or a month.  It's a process.

 

*I got diagnosed with a kidney stone once.  It wasn't, of course.  Turned out to be something unrelated to the kidneys or ureters, but in that general area of the body, and it self resolved.  But it should be easy enough to visualize with today's radiology techniques. If that's what it is.

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9 hours ago, dennis said:

Sorry for you pain Wheels. I don't have much to offer. Bill Walton wrote a book about it. It might help to understand how to get through it. He said some of the same things you did. 

https://www.kirkusreviews.com/book-reviews/bill-walton/back-from-the-dead-walton/

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