This Is Really Getting Nuts/still Medication Issues! :(

[Red Barchetta]

Forgot to add (not that it should matter but) - it's not just psych drugs I have an issue with - I basically told my urologist to take all his drugs and shove them as well - again due to side-effects - the fact that there is a bruise on the inside of my kidney from too much back pressure, don't matter at all, just the drugs cause issue that were not there before using them - therefore, it's not medication, it' poison end of story.

Now Botox was mentioned, but that looks like it will do the exact opposite of what is needed (make the bladder hold more and not leak as much) - leaking I don't care about at all, been incontinent since birth anyway - I just need it to drain, not hold back.

Also, to see it might cause pain - umm, anything that might cause issue that can not be easily reversed (like I have been doing - just stop taking a pill, or something like that) forget it..

[Dill_Pickle]

Red

A bruised kidney, or back pressure from not draining the bladder, damaging the kidneys, is dangerous....and must be controlled for. You cannot afford to lose a kidney!

Now, botox, or a stent, can make your sphincters stay open and keep you drained...might be very reasonable in your situation. Such a solution might also allow you to take drugs to make your mind work better.

Now, as for sleep....sleep is the great healer. Believe it or not, proper sleep also makes you smarter. So, beyond not destroying your kidneys, proper sleep is the most important thing. Not that some aren't unable to sleep without assistance...and it sounds like you may be one of those. My wife takes Trazodone. There are sleep medicine specialists, and a huge number of CPAP users...I suggest that you need to speak with your GP aout seeing one. Tell that person about your recent kidney issues, and that keeping them healthy is more important to you than whether you can control your bladder or not....especially since control for you would be a novelty.

In particular, you need to assert yourself...make sure the docs know what YOUR priorities are, do not let the doc ASSUME...because he or she will assume wrong. I see this as a big problem with your relationship with your now former urologist.

[Red Barchetta]

Oh, I had never actually stopped seeing a urologist, but that last one was pretty lame...In fact the last one I wouldn't have even known the kidney was bruised because he never did any scan of anything...And the only medication the last one wanted to know about was FloMax (but I guess at least he went forSelf-Cathing) - the new (well reasonably, but he got a bit of an advantage kind of, I did know him before I changed to him) guy tried other drugs, but again, messing with what is not broke.

[Dill_Pickle]

Again, your urologist is ASSUMEing, you must correct this! And ask your shrink and other docs who the local TG patients go see...you need someone with that kind of mental flexibility.

Botox you would want not in the bladder but the sphincter....

[sarah_ab]

remember all we are getting is the OP's side of the story, which is filled with paranoia and tangential thoughts.... so honestly, from what i'm seeing the OP is extremely treatment non compliant... whether due to psychological symptoms or just plain stubbornness.... all we know is what the OP is telling us and how the OP is telling us this speaks more than what is being said!

[Red Barchetta]

remember all we are getting is the OP's side of the story, which is filled with paranoia and tangential thoughts.... so honestly, from what i'm seeing the OP is extremely treatment non compliant... whether due to psychological symptoms or just plain stubbornness.... all we know is what the OP is telling us and how the OP is telling us this speaks more than what is being said!

That kind of doesn't even matter no STILL don't know what I am going to do with anything, but this is nothing more than information right now...But no I ABSOLUTELY will NOT allow you to take something that works fine and cause it not to, or make something that already has problems and make it worst (some drugs from both psych, and urologist made acid reflux come up over what my Gastroenterologist was using to stop it.

[Elfy]

Red, you do sound very paranoid...

[Dill_Pickle]

Red,

There is a good reason the docs don't want you cathing if they can avoid it: SERIOUS, life-threatening UTIs. There is a risk there, and you are stubborn enough to ignore the signs until you are in deep trouble.

Not that schools aren't themselves nuts...my SIL just retired a bit early because her principal was nuts, and playing games with her budget. Not that, in the 1980 s when I was still an undergrad, I didn't meet plenty of folks who had coasted their entire senior year in small town high school. And not that i didn't flunk a final or two.

What you need to do is take some reversible excursions from the baseline, and see what happens. Things aren't right, and you could do better. In your shoes, I would start with sleep. -- because without sleep, you will not heal, and you will still need that shrink. Getting proper sleep is the most important thing.

Some suggestions here

1 Calcium and Vitamin D. Get the D levels checked, and supplement around 4000 iu per day.

2 Melatonin is a very helpful and relatively safe sleep aid. So is a glass of warm milk at bedtime. So is a bedtime ritual, exercise a few hours before bedtime, and other techniques. Get up at your regular time, and start moving around in daylight, every day.

3. Seriously increase your vegetable intake. There are three main groups of veggies, and I am told you need all three every day

Colors. - stuff like carrots

Leafy greens, especially kale, iceberg lettuce doesn't count

Cruciferous, as in broccoli, cauliflower, brussels sprouts, and cabbage

[Red Barchetta]

Red,

There is a good reason the docs don't want you cathing if they can avoid it: SERIOUS, life-threatening UTIs. There is a risk there, and you are stubborn enough to ignore the signs until you are in deep trouble.

Umm, apparently you misunderstood - I am ALREADY cathing 3 times a day, and still it seems to not be enough (and UTIs can be fixed fairly easily - a few months ago I did end up in the hospital for a few days over one, but only because it wasn't caught sooner, I have had that before, but all it took was some pills for about 2 weeks, and nothing else special)

And yes I do keep getting all that with the privately - don't really care - I have held on to that being absolute top priority for 45 years, as far as I am concerned, I am going to the grave with that being the thing I give a s$!t about the most - EVEN over health and safety!

You also can not sare anything I trust you with - and again because of the way things are done. I have had PLENTY of injuries I did not go any farther than what I could do with it myself even though I knew it could use more for the SOLE reason the way it happened, I thought if they know that, they would call the police over it - and no way was I going to talk to them, even to say your way off - I just left it untreated, specifically to avoid any info going from medical to them.......

[Red Barchetta]

....

Botox you would want not in the bladder but the sphincter....

I assume you mean External....

looks interesting so far......

[Dill_Pickle]

Red

I EXPECT that you don't trust my suggestions...they are not, after all, even reasonably scientific. Even if they were, and I were a doctor, I would expect you to cross-check them either against your own knowledge or other knowledge you look up.

However, the paranoia in your writing is evident. You have been doing the same things for quite a few years and getting the same results, and have no right to expect different unless you do or try something different. The stuff I am suggesting, especially about sleep, should not be dangerous or difficult. If I am totally off the wall, your cost is a few hours of research, and possibly a few nights in bed with the lights out instead of staying up. Anyway, it is now past my bedtime.

[Red Barchetta]

Keeps up mainly because other people just don't want to back off (well kind of - I mean before I was done with school no one bothered at all, but since it keeps coming up)...THE first time, o.k. I really didn't know much about it...After that, the point has always been even if you drugs do help ONE thing, history shows they will also break like 10 other things, now MAYBE not, but either way, first sign of any effect other than what you want and I WILL stop using it. - And a Psyco especially, if you are doing anything more than drugs, it has got to be 100% off the record because I absolutely do not want anyone other than TREATING medical professionals (that means no details to my insurance Co. either, even if you argue they have doctors that look - well that's the reason, they do look, and while they are doctors, they are not actively treating me - therefore, they get exactly zero information), and myself to know anything about any of it, in any situations - and to preserve that, I would rather just keep it off any records, fine than my own doctors don't know unless I tell them, but I dose give me that guarantee, and that matters way more to me.

But that seems to be the whole thing - I know it's not going to help because the drugs I am just not happy with due to side effects, and they want every word you say on record, I won't have that either - so I already know it's going no where (Well, MAYBE it would if it was just some guy stopping by for a BBQ with no recording devices or anything like that) - but it gets where no one will leave me alone about it, regardless of the fact I keeps telling them I don't care if you you're satisfied with it or not, I am.

That's when finally it's a "fine have it your way, but I don't want to hear one more word" situation, followed fairly quickly by "See, I told you", because all that is truly happening is you are pissing me off.

Maybe it is unrealistic - but privacy is and always has been a huge concern so....I am talking I was the kid that always had a 100% empty locker (cleaning it for me, meant take a rag and wipe off the dust) because I would carry everything with me all the time instead of put it there - the reason was because the school was reserving the right to search them at any time - and no way was I having that - I MIGHT have if it was like an office desk at the time (the Co. desk, so they can open the draws, but no going through boxes, pockets, exc, just what you see from just opening it, but not touching anything inside is what you get because all that belongs to whomever is using it)

AND - I am still looking at some (I think some might be from this post, don't know I get a bunch I am looking at) things, so it's not (never really was) being totally ignored, but I will put it on the back burner for now - and if everyone would just let me leave it there until I see something....This time it was an argument that they now have drugs that were not available last time you tried - well that much was true - but guess what? - Those new drugs had worst side effects than the once I had spit out like 20-25 years ago!

[Dill_Pickle]

Lets continue with some questions:

Right now, you self-cath 3x/day, which has got to be a pain in the neck and has clear potential to give you a dangerous infection. If you could avoid cathing, what would acceptable side effects be for you? What have been some unacceptable side effects you have experienced in the past?

You are also evidently paranoid and not thinking clearly. It doesn't take a genius to figure out that you have a significant sleep deficit which is causing much of the problem. What are you looking at to improve the quality of your sleep?

Most of us are willing to accept some degree of compromise to achieve what we want...for example, I accepted a certain amount of dizziness when I needed antidepressants, not to mention some impact on my ability to ejaculate, difficulty urinating, and some accidents. I have to clean my CPAP periodically, and I sleep much better and am much more awake as a consequence of hookig it up to my nose nightly. I also accept the pain of getting blood drawn for tests, because I know those tests help in the long run.

[Red Barchetta]

Well, let's see - not really much, that's why I kept pushing the cath instead of drugs in the first place - pain in the ass, but nothing is really effected other than look out for UTIs (and no it dose not hurt as a lot seem to think, MAYBE initially when you are just getting use to it..)

But Uro drugs - well reason for stopping them included; Causing abdominal pain (no way unless he also provides something that will remove it), any sort of sexual dis function, acid reflux, lowering pressure but not actual volume of urine retained, dark urine, drowsiness, causing hallucinations.

[Dill_Pickle]

Lowering the pressure will help your kidneys....so it is probably worthwhile

Dark urine....depends....for example, eating fresh beets, and OTC drug phenazopyridine (relaxes irritated bladders) will turn your pee orange, but both are otherwise harmless....and if you eat beets, your poop may also turn red, again harmless unless it causes panic.

But it sounds like that part of things works well enough for you for the time being, even if you haven't told me which side effects might be acceptable. I return to my original statements and question:

You are paranoid and not fully coherent due to your lack of proper sleep.

What are you doing about sleeping better?

I claim that you won't be able to improve anything until you start sleeping better, and therefore it is the most important thing!

[sarah_ab]

i don't think its a lack of sleep making the OP paranoid.....

[Red Barchetta]

i don't think its a lack of sleep making the OP paranoid.....

Well, fine yes that is there - and yes has been as long as I can remember - so o.k. it's a factor (and I'll even concede that part but not all of that MIGHT be sleep issues [but not all of it as it was there before sleep issues started - way before it]) - but mostly just trying unusually hard to find a solution that is not going to interfere with much. - if t absolutely can not be avoided, than yes I am going to really look HARD AND LONG at all possibilities to spot the one that dose it the least.

Out of what I have tried so far, the straight cath has been the best for me; it dose not interfere with anything really (other than a slight pain in the bottom) just look out for UTIs, and that is not that bad for me...For that there is no real hassle at all - just collect a little urine after cathing and deliver it to the lab - no hassle (now if you insisted on watching as I got the sample, now you are pushing it, and unless I hand pick the facility and the individual that dose that, it will not happen).

But this guy is telling me there really is no surgery he could do because of the way my back is...I have known for a while something was not right with it, but didn't bother with it, because it didn't bother me (kind of like a bad lamp in a room you never use anyway) - but based on that statement - now I am going to see what is up there, and can anything be done there, to open up more options.

[Dill_Pickle]

Wmaybe not sleping isn't the basis of the paranoia....but proper sleep is the basis of healing, and fighting off infections and other degenerations, and thinking clearly and having the energy to act on things. So I still claim that getting proper sleep is the most important thing. It will make everything else better!

[sarah_ab]

i love that you won't piss in front of someone and won't follow half or more of treatment recommendations but seem perfectly alright with a room full of strangers who you are trusting to have actually followed all proper hygiene and safety techniques .. put you to sleep, and while you are unconscious you are trusting them to cut open your body and not mess up! and somehow feel surgery has fewer side effects than meds....

[Red Barchetta]

i love that you won't piss in front of someone and won't follow half or more of treatment recommendations but seem perfectly alright with a room full of strangers who you are trusting to have actually followed all proper hygiene and safety techniques .. put you to sleep, and while you are unconscious you are trusting them to cut open your body and not mess up! and somehow feel surgery has fewer side effects than meds....

[sarah_ab]

ummm wake up call!! You are not going to know every single person in the operating room, and you won't even get to meet every single person in there.. all the nurses and others who help... you aren't going to meet every single one... and what if one is sick and another is covering? and you are not going to know every nurse and other professional in the room for 5-10 years (Which by the way is an incredible LONG time frame and utterly rediculous)....

[Red Barchetta]

I am absolutely not messing with a catheter when I don't really know you period - and that is the only way anyone has ever gotten urine.

[Dill_Pickle]

Red

You are seriously paranoid...and not thinking at all clearly. Get away from your mother...something very unhealthy is going on there.

GETTING SOME GOOD SLEEP IS THE MOST IMPORTANT THING!!!

Without good sleep,NOTHING will work.

[Red Barchetta]

Really doesn't matter -bottom line, mess with anything that is not broke, worsen something that is, have any situation where info would be passed to anyone other than those directly involved with treatment, or make me feel as though I am be watched any closer than before treatment started I WILL turn it down...

I told you I really didn't even want to stay in no hospital to treat a BAD UTI - but I'll admit initially, too weak to do much myself initially...After 24hours though - the infection was surely not gone..But I had enough strength back that I could have done all the stuff myself in my own bed, and been fine.