never say die (literally)

[Cochranme]

Last week got extremely frustrated with my living situation (at home with my father, who is generously supporting me while waiting for transplant)  My mother and her husband live around the corner from me, which is both a blessing and a curse, as they are endlessly supportive, but also extremely unstable and loud...not a great mix for recovery.  I try to avoid going over there while still showing my appreciation.  Anyway, after a very frustration night of them bickering loudly, on the way home I texted my siblings (my supposed closest confidants) and said, with full sarcasm and joking spirit intended, "I swear if I don't get away from them I may hurt someone" 

Fast forward to 6am, in my father's house, to which my mother does not have a key, i'm dead asleep, and being shaken awake.  "WAKE UP, YOU'RE HAVING A MANIC EPISODE, YOU ARE HURTING YOURSELF AND THOSE WHO LOVE YOU!!!!!"

(barely awake)  - "whaaa?"

"WE HAVE TO GO TO THE EMERGENCY ROOM NOW!!!!"

(now awake) "What?  NO! I'm perfectly fine."

"YOU'RE IN DENIAL!!!!"

(starting to get pissed)  "NO, I'M NOT.  NOW GET OUT AND LET ME SLEEP!"

".....NO, I'M NOT LEAVING WITHOUT YOU!!!"

(now EXTREMELY pissed)  GET.  THE.  F*%@.  OUT.  NOW!)

fast forward to 8:30 am, still asleep

(phone call)  "hello, this is (my social worker)  same conversation ensues, except she constantly interrupts me then very vaguely hints that if I don't go immediately it "might" affect my transplant application.

(finally upset) "maam, I'm not suicidal.  After all I've been through, if I wanted to be dead, I'd have been dead a LONG time ago.  Can I just have an hour to shower and get dressed and I'll come and be evaluated?"

NO. You HAVE to go NOW..

Finally my nurse interrupts ... she asks if I could just come and speak with her one on one

(finally in tears now)  Yes maam, that would be fine.


after a 1 hour private conversation with my nurse..."you obviously are upset, but I see no reason why you need to go to the hospital"

Have to wait for an hour while the social worker and her battle it out with the doctor.

am finally told I can leave...Social worker continues to call twice a day and tell me to go "IMMEDIATELY' to the emergency room.  I finally just stop answering her calls.

Doctor starts calling me and asking if I'm suicidal...for 4 days straight.


So, boys and girls, the lesson here is  (at least for me).... every single text message must now end in a "LOL Just kidding)  Plus, I have the wonderful joy of not knowing whether or not to tell any of my family or medical team the absolute truth....I think I'd rather say 'bomb" in an airport than go through this crap.....

LOL JUST KIDDING BTW

[Charlie B53]

I've don't a somewhat similar stupid thing.   Long ago in constant pain from permanent injuries, frustrated, somewhat depressed, but still manage to maintain my sick warped sense of humor.

I made the mistake of telling my VA Dr that some days I almost feel like climbing the local water tower with my rifle.  I am constantly surrounded by idiots.

The Dr told on me.  For the next year and a half I was plagued with calls by Social Services, Psychiatrists and Psychologists, wanting me to come in for 'evaluation'.

Needless to say, I totally understand what you are going through with them.  No one appreciates our warped sense of humor.




p.s.

Psychologists are begining to understand that a warped sense of humor is actually a sign of intelligence.  It takes a bright mind to find the humor in today's sick society.

[Simon Dog]

The funny thing is that as a D patient, you have the right to commit suicide by stopping treatment and intervention cannot be forced on you.  It is a right that people not requiring life support treatment do not have.

[LorinnPKD]

One thing I'm finding is that it's good keep your inner monologue and outer monologue worlds away from each other.

I have a pretty morbid sense of humor, but I find that my loved ones kind of freak out if I push that too far.  So I spare them from it because I love them.

And I can't blame them -- it can be scary to love someone who can be taken away from you in an instant due to sickness, and I try not to make it even scarier than it is.  I'm finding out very quickly who my true friends are and I don't want to do anything to make it harder for them to handle this.

And yeah, Simon Dog... The funny thing is that knowing I have a choice to stop makes it easier for me to continue.  It's funny how that works!

[Charlie B53]

LOL  We be a bunch of sick Puppies!

In more ways than one.

[OldKritter]

comforting to know it's not just my brain that sometimes peeks in that direction

[Charlie B53]

Somewhere we have a forum for humor.

It's a wonder we don't have a thread for  'Sick Humor'.

Maybe we should start one?  Not to sure how that would go with our Administrators.  There ARE some lines that just are not crossed.

[kitkatz]

I have a very morbid sense of humor about my illness and when things happen I tend to mouth off about it.
When hubby had his leg amputation I looked up amputee jokes and shared them with him.
We have an on-going joke about a one-legged waitress at IHOP named Eileen. 
And it gets worse from there.

I told my vascular surgeon I was really attached to the graft in my arm when he went to take it out.
I even brought him a T-shirt that said "Trust me, I am your doctor."  He laughed at that one.

[Cochranme]

  Well I ended up in the hospital again last night. Was feeling pretty good about myself and my decision to go back to school and when I got home yesterday my dad with that being said we need to have a serious talk and I was delusional and for myself argue with him for about an hour after that I was so upset I called my nurse who told me, of coarse, go to the emergency room. Went to the emergency room and had to be evaluated he was told that I was not suicidal in anyway just a little nervous and agitated. However my blood pressure was pretty damn hard and that's with a fair amount of blood pressure medication. They gave me another pill and lay down for 30 minutes literally without moving we came and checked and my blood pressure going up. In disbelief they gave me another pill lay down from the half an hour same story. Then he walks  in and says "I guess were just going to send you home " I ask if that safe, and the reply "well it just seems like that's where your body operates, when I have the else we can do.  Try everything that we know " .     So basically get to go spend so he'll dollars the Burton's room just because I was in a bad mood. The most insulting.  Thing occurs afterwards. My father comes the hospital pick me up to tell what happened he just try and run in the system to go back to the hospital. He and angry state says why did you let them not fix your blood pressure?  I told him again that they tried everything at the new Hal in the emergency room rather sleep at home in a hospital bed. He continues to be angry at me for the next couple of minutes so I said yell at them again that everything that could be done was done. My brother called me when I get home same story "you can't give up was like that "you have to keep fighting !"started to see a pattern here. If I give up, if you have suicidal and go to the emergency room. If I did them to turn into a fight, if you don't have a manic episode they send me to the emergency room. If I go down the middle and sort of said that I want to live, Soto say and gave tired, they tell me I don't want to transplant enough and I still end up in emergency. Looking for a way to win here

[Charlie B53]

Sometimes our Family can be our greatest problem.  Google 'co-dependent' and maybe you will see the pattern of how people contribute to each others problems.

It is very difficult to break the cycle while remaining within those relationships.  Especially those living together.  Recommending a seperate residence, keeping some distance and limiting contact is easy to say, but very dificult to do without a decent source of income.  Housing and utilities costs money.  Money doesn't just fall off trees.  At least not in my yard.  My trees drop lelaves that make a huge mess if I don't get out there and clean them up.

So the only real advise I can give you is to learn what co-dependance is.  See how this is happening within your Family.  Figuring out how to make any constructive change will be the task you are facing.

It ain't going to be easy.

[kickingandscreaming]

Are you being treated for bipolar?  It certainly seems like that's what everyone around you is concerned about.  Mania is very tricky.  It sometimes looks like a very good thing but usually isn't.  There are meds to treat bipolar disorder.  They aren't without consequence, but neither is untreated bipolar.

[Cochranme]

Are you being treated for bipolar?  It certainly seems like that's what everyone around you is concerned about.  Mania is very tricky.  It sometimes looks like a very good thing but usually isn't.  There are meds to treat bipolar disorder.  They aren't without consequence, but neither is untreated bipolar.

I've been evaluated and have just been diagnosed with depression, which is not news to me.   I've been approaching it with medication, exercise, diet, and regular therapy .    One of the issues with manic depressive label is that when I'm at my best I'm at my busiest  and tend to be kind of a type a personality naturally .     I'm certainly willing to explore that option, however it seems with my caregivers that every time I get excited about something in the smallest way they're very quick to label it mania, and anytime I just get upset about anything of course it's labeled as depression which sometimes it is . However I think that all of us are entitled to have a down moment every once in a while. It does kind of feel like I'm stuck in this place now where I want to be honest with my medical team and my caregivers, but  if I tell them I'm having a bad day and half my team wants me to go to the emergency room. I'm thinking of having a meeting with the clinic manager because I've been told one thing by my nurses  and another by my social worker. And I definitely appreciate the codependent comment. I think that applies very well to my parents. None of them have any emotional or psychiatric training, and of course they are also new to dialysis. But they do feel very free to give their opinion strongly on what I should be doing it with my diagnosis, and they get offended when I don't take their advice. I could deal with that pretty easily as normal parenting  hangups, but the issue is every time I don't do what they want they often contact my medical team and tell them that I'm having a "episode "so now I'm in this terrible situation with my medical team doesn't trust me, I don't trust my caregivers, my caregivers don't trust each other.    It's a real mess and it's actually pretty damn funny, or would be if I wasn't the one that I had to go to the hospital every time. Anyway thanks a lot for the content in this thread. It's very helpful to hear that other people going through summer situation it's a real mess and it's actually pretty damn funny, or would be if I wasn't the one that I had to go to the hospital every time. Anyway thanks a lot for the content in this thread. It's very helpful to hear that other people going through similar situations.







sp + edit mod Cas

[Simon Dog]

I made the mistake of telling my VA Dr that some days I almost feel like climbing the local water tower with my rifle.  I am constantly surrounded by idiots.

Say that in MA and the local PD will confiscate all your guns, revoke you license, and turn them overe to a private warehouse that will erode your equity to zero with usurious fees.

They aren't without consequence, but neither is untreated bipolar.

A common side effect of bipolar treatment is ESRD.   Shrinks prescribe Li2CO3 like it was candy and that crap roaches kidneys over time.  I met one bipolar at a BBQ recently who was matter of factly told by her MD "You need this drug but will be on dialysis in about 20 years because of it".

[kickingandscreaming]

I have a good friend who has bipolar and is taking Lithium and another drug for it.  She is regularly tested for kidney function.  So I would imagine that they could "catch" signs of kidney dysfunction pretty quickly and do something about it.

[Simon Dog]

I have a good friend who has bipolar and is taking Lithium and another drug for it.  She is regularly tested for kidney function.  So I would imagine that they could "catch" signs of kidney dysfunction pretty quickly and do something about it.

Unfortunately, can and do often life in separate worlds.

[smartcookie]

There are ways to ask questions about suicide to see if the person is joking or seriously suicidal.  Medical and mental health professionals are supposed to be taught that in school, but I think that some miss that day in school. 
Anyways, to help make the craziness stop, why not find a therapist who can meet with you weekly?  He/she can report to your doctor if your medicines need to be changed or if you are in crisis, and then everyone can be told to back off because you are being seen for your illness.  You are being treated and followed closely that way.  I have a patient with some mental health issues.  When I do his depression screening, he always tests as depressed, but I let it slide because he sees a therapist and is on medication.  It would be a like a nurse getting in a tizzy cause your A1c is 6.7, but you are already on insulin and seeing and endocrinologist if I called the doctor with every depression screening saying, "Oh no!  Mr. So and So is clinically depressed!"  The good thing in this is that you have people who care for you and are trying to help you.  I think if you have any sort of history of mental illness, at the very least getting a therapist would show the transplant team that you are willing to put in hard work to be healthy.  Good luck to you!  I pray you get a kidney very soon!

[Simon Dog]

There are ways to ask questions about suicide to see if the person is joking or seriously suicidal.

Details please.

[smartcookie]

We are taught to assess if a person has a plan and time line.  Also, we are taught to look for homicidal urges in the same way.  Once you talk about methods and timeline, you get a pretty good idea how serious the person is, if they are not lying.  All suicidal talk should be taken seriously, but if you have someone who says, "I could just kill myself," but has never thought of a method or timeline, you are probably okay.  You also look for changes in mood and behavior.  If a person has been struggling and really upset, but then becomes happy and content, that is a he or she has made up his or her mind to commit suicide.  Changes in appearance and giving away of personal items also clues you in.  That is kind of a basic idea of what to look for.  From there, you have to make the decision of what to do.  Generally, if you are concerned someone is going to commit suicide, you escort them to the hospital.  You can also call the police if the danger is imminent and there is no time to get to a hospital.  In a dialysis facility, my clinical manager would want me to discuss with the doctor before I did anything, but the key is to not leave the person alone. 

[sahern]

I have no problems mental health wise, but I am sure all of us on dialysis have a time or two that we are not always positive.  With me it lasts from 15 minutes to an hour and then I am back to normal.  One time I asked the social worker what if I had said I was having problems what would she do.  I did not get a strait answer.   I would never answer how I really felt because I want a transplant.  I do not trust anyone to look at me for how I am. not what they think I should be doing or how I am acting.  Untill they have been on dialysis they will never know what a person is feeling. 






sp mod Cas

[smartcookie]

That, Sahern, is why I am very careful what I write in my notes.  If a patient tests as depressed, I try to write about the circumstances surrounding the depression.  For instance, it a patient just had a family member die, of course he or she will be depressed!  I put something like, "Pt is grieving appropriately, but did test positive for depression.  This appears to be situation depression regarding the loss of a loved one."  That gives it context.  I have run across other social worker notes that do not do that, making it seem like the person is just depressed normally.  Everyone has bad days, depression at times, anxiety at times, etc.  Diagnosing a patient as depressed when he or she is having a bad day is cruel and against social work ethics. 

[Simon Dog]

We are taught to assess if a person has a plan and time line.

So I guess my answer of "I plan on discontinuing dialysis at age 85" met both requirements.

[cassandra]

So I guess my answer of "I plan on discontinuing dialysis at age 85" met both requirements.

       Too funny Simon





Edited: Fixed quote tag error- kitkatz, Admin

[Charlie B53]

Only 85?

I am plalnning more like Moses, sticking around, being a problem for my Kids, and Grandkids, for at least 400 years.

I expect to see a whole lot of learning happen.  Some pretty neat things are going to be done.

I can't quit now.  Too many things to get done.  Son hasn't learned yet and it's my job to teach him.

[smartcookie]

I have never considered quitting dialysis to be suicide.  I do think it needs to be thought out carefully, but I am always supportive of patients who decide to stop dialysis.  My first social work job was hospice and I had a patient who found out he had kidney cancer.  He didn't even get a biopsy to determine the stage; he just wanted to have as much quality of life as possible before passing.  Fast forward to my next job as a discharge planner at a hospital, and he ended up on my floor.  I got to speak with him again before he passed that night.  I don't think he committed suicide even though his cancer may have been curable.  He was just an older gentleman who was satisfied with his life and did not want treatments that would make him ill.  I think of dialysis in that way for some people.  My patients who have chosen not to go on dialysis or to discontinue dialysis had many health problems that made or would make dialysis harder than normal.  Things like wounds, cancer, advanced age, severe heart problems, etc.  To me it is not giving up, it is deciding that some things are more important than living longer and being sick, like a good quality of life and being more alert and able to speak to your family at the end. 

[Simon Dog]

My patients who have chosen not to go on dialysis or to discontinue dialysis had many health problems that made or would make dialysis harder than normal.

I know one patient who decided to d/c dialysis when his dog died.   It was a much loved dog, and was waked at the local funeral home.