please help me im scared

[Simon Dog]

Pat - did you have to keep dating a tech a secret?    Medical staff dating patients is considered a serious boundary violation, even when the patient consents, and can cost a professional his/her license.

[kristina]

Let's see....GLM has been complaining about her clinic for YEARS now- everything from no staff members, including her nephrologist, ever listening to her, to rude treatment and inadequate/dangerous care..  Yet, she stays there!  Is this normal behavior for someone who has a good sense of self  to stay in a bad medical situation?

I guess I'm a newbie here because I don't post that often and just lurk. I've actually been a member for 5 years. So yes, I have seen Gothic's previous posts.

Everyone has their own way of coping. What may seem like griping may just be...well, the actual reality for that person. It just is. Or maybe it's not. None of us have any way of knowing what each of us are really going through. Every problem is different, and our ability to deal with it is different day to day, week to week, year to year. Someone else's very best effort might be your version of coasting along in your life. A problem that you could fix in a matter of days might take YEARS for someone else. So many things can get in the way of progress--lack of money, lack of access, lack of education, where you live, who's around you, what's around you--the list goes on and on. But that doesn't mean GLM or anyone of us aren't trying. But no one should feel like they have to justify their situation to anyone.

 I think everyone has the right to use these forums in the way that they need to -- unless it is abusive to others. A lot of times the forums are just a place to vent. To tell someone, anyone, how you really feel, how you perceive your situation, to talk about all that is going wrong with your life. The struggle is real!

That's my  .

 Maybe we are here to advise, encourage or kick each others butts, but I think most importantly we are here to listen and bear witness to each others journey.

Thank you for saying what you have said, drawingdami, it is very much appreciated !
... And it is very true: we all deal with difficult situations differently  ...
For example, at one time (whilst I was still pre-dialysis), I had terrible problems with certain medics and I was shocked, devastated and - eventually - traumatized,
because my bad experiences with medics happened on the NHS (National Health Service in GB) and unfortunately it did not look as if there was any way out...
... After putting into place my complaints and going through all possible complaints-procedures without seeing any positive result,
my husband and I put our thinking-hats on and then we decided, that there was no other way out, except for me to get private health-care from then on
and in order to pay for my health-care privately (including blood-tests etc.), we had to cut down considerably on many basical things ...
... And so I was finally given a chance, to receive proper professional medical care from then on ...
...  And then - all of a sudden - a private doctor referred me to an NHS-doctor and I have received the very best NHS-health-service (including dialysis !!!) ever since...
... To cut a long (and very sad) story short: Without letting us know, the authorities took our complaints very seriously indeed and they investigated thoroughly
and the doctors my husband and I did complain about, have eventually "been resigned" ...
... and it is good to know, that they have no longer a chance to traumatize any more patients  ...

[PatDowns]

Pat - did you have to keep dating a tech a secret?    Medical staff dating patients is considered a serious boundary violation, even when the patient consents, and can cost a professional his/her license.

Hey Simon - here's the short answer...no, we didn't have to keep secret that we were dating. 

The longer version...You have to understand, this was 35 years ago.  The ESRD community was much different than it is today.  Corporate dialysis, while firmly establishing a foothold, comprised only around 33% of clinic ownership, with National Medical Care as the leader.  The rest were either hospital based or owned by the nephrologists .  It wasn't yet considered a conflict of interest for physicians, in this case the nephrologists, to refer patients for treatment to a facility they personally owned. 

The vast majority of these clinics were small operations, with maybe 10-12 chairs.  In some ways, because the treatment was so new and clinics so few, there existed a "family" environment between patients and staff.  Don't get me wrong, there was an understood hierarchy, starting with the nephrologist and administration including the head nurse.  However, the lines were more blurred between patients and floor staff, especially with 3 day a week interaction.  It wasn't at all uncommon for them to become friends, date and even get married. 

I dated and went out with numerous nurses/techs from the clinics where I dialyzed during my first "tour of duty" on dialysis.  The tech referred to in a previous post, and I dated for about 3 months or so and the relationship ended OK.  However, a floor nurse I dated (coincidentally, we lived in the same apt. complex, a couple of buildings over from one other) didn't take it so well when I wanted to stop seeing her.  I'll just say that I had to watch my back for awhile when she was scheduled on my shift.  Sometimes the UF on my machine mysteriously was turned up.  Others I went out with a few times was on a friends only basis.  That was fine by me.  I enjoyed their company and there was no pressure having to explain my on going medical treatment. 

The bigger question is why would I want to date those who were responsible for my medical care? 

I was engaged when starting dialysis.  Although I was only 22 at the time, "E" and I had been dating since her senior year in high school.  She even wanted to be my partner so I could do home hemo.  However, we had a pretty volatile relationship and I wasn't all that anxious to having "E" a major part of my medical care.  I figured going in for treatment and being done with it was the best way to go.  Anyway, despite my best plans that dialysis wouldn't negatively effect our relationship, it did.  I'll take the majority of the blame, but we were young and immature.  I pretty much hijacked the relationship and we broke up for good a year and a half later.  "E" related to me how her mother told her it was one thing to marry for better or worse, but why marry, especially so young, someone already with a chronic disease with a lousy mortality rate?  I had the same feelings, but never expressed them to "E."  Hearing it from her was devastating.  From then on I never looked upon myself as marriage material,  I was damaged goods.   

Anyway, dating dialysis staffers helped me to get over my break up.  I had nothing to prove - they knew about my illness - and there was no pressure.  In the short term, I felt like I could still be desireable.  Yet, there was the darker side of me, always wanting to ruin something good, saying they were only with me out of pity.  I never allowed future relationships to go longer than 6 months.  I always found a way to end them.  Ironically, it took some 30 years later, after losing my transplant to finally realize how that way of thinking kept me from fully enjoying life. 

Probably more info that you wanted! - PatDowns

[gothiclovemonkey]

So you are the kind of person who will talk crap but not back it up. I see.
Thats cool.  so cool

 

[Charlie B53]

Seems in some ways those older days had many advantages over now.  All the plastic, computers, corporate greed, depersonalization, doesn't leave much room for personality, compassion, friendship.

PD, have you shared all this with anyone here before now?   Sorta feels right to better understand people don't it?  I like it.  Many of us don't even know our next door neighbors like we did when we were kids.  Further proof of that 'Divided we fall' concept.

I don't know of any that grew up with the proverbial 'silver spoon'. Most appreciate every little thing that we have managed to earn, and hang onto.  I, for one, still miss working,, being useful, self sufficient?  Well, sorta.  I'm still married. I can't remember what it was like (much) before.

Hope you decide to hang around, there are a lot of other people on these boards.  We ALL need each other.  Whether we are willing to admit it yet or not.   None of us are getting off this rock alive.   I might, I'm gonna jump up high at the very last second!  May not get very far, but I'm gonna try!

Take Care,

Charlie B53

[Simon Dog]

It wasn't at all uncommon for them to become friends, date and even get married. 

Wow - I learned a lot.

Nowdays, staff is even trained that offering a patient a ride home is an unprofessional "boundary violation", whereas, arranging an ambulance or a cab is not.   Romance, like counting to five with the Holy Hand Grenade of Antioch, is right out.

[Deanne]

Thank you for sharing all of that PatDowns. I was diagnosed at 9 years old and grew up feeling like damaged goods, not worthy of even having friends. I didn't have anyone to call a friend from age 9 until I started college and didn't have emotional support at home, either. I learned very young to be very self-sufficient in everything.

I've never been able to have a long-term relationship. I freak out if a guy gives me a second glance. I was sure I'd be dead by 30 and didn't want anyone to waste his life on me. Here I am in my 50s! I sometimes wonder what my life would be like now if I'd had other people in my life at a young age. Mostly curiosity though. I turned out to be a survivor and someone I can be proud of.

[Charlie B53]

Further proof of the credits I have given you all that you are true Warriors.  The common person hasn't a clue how tough you are.

[Charlie B53]

Further proof of the credits I have given you all that you are true Warriors.  The common person hasn't a clue how tough you are.


MAkes me think of an old song, don't remember the artist.

Walk a mile in my shoes.

[PatDowns]

Thank you for sharing all of that PatDowns. I was diagnosed at 9 years old and grew up feeling like damaged goods, not worthy of even having friends. I didn't have anyone to call a friend from age 9 until I started college and didn't have emotional support at home, either. I learned very young to be very self-sufficient in everything.

I've never been able to have a long-term relationship. I freak out if a guy gives me a second glance. I was sure I'd be dead by 30 and didn't want anyone to waste his life on me. Here I am in my 50s! I sometimes wonder what my life would be like now if I'd had other people in my life at a young age. Mostly curiosity though. I turned out to be a survivor and someone I can be proud of.

I get it, Deanne.  For over 30 years my kidney failure was a road block from working on my underlying issues of inadequacy.  In a perverse way, it provided safety.  Yet, in my public persona, I was a success story - someone who was able to do and live well despite being on dialysis for a more than a dozen years, continuing to work full time, advocating for others with kidney failure and finally getting a kidney transplant that worked out so well with no side effects.   Unfortunately,  I had to find my rock bottom - the loss of  my transplant and being so scared of going back on dialysis that I was on hospice care facing near death - before finding the courage of honest introspection.

And, you've put in a lot of hard work, self contemplation and growth to get to this point in your life.  I'm sure it does feel like a good, safe place to be.  However, there's one more plateau to reach, that of a THRIVER.  Until conquering the fear of long term relationships, you'll never truly experience intimacy and happiness.   That's when you'll be able to enjoy all that life has to offer.  Have confidence in knowing that you have  established a good foundation on how to put the worst that can happen into perspective.   Then even if the relationship ends, knowing you are capable of putting yourself out there is quite empowering. 

[PatDowns]

Further proof of the credits I have given you all that you are true Warriors.  The common person hasn't a clue how tough you are.

I vehemently disagree with you.  That is a defeatist attitude.  We are no more "warriors" than anyone else facing adversities in life.  It allows for excuse making to just accept ones lot with no expectations to do better.  Also, even the so called "common man" has trials and tribulations muddling through life.  I could easily say I'd rather have kidney failure than being blind or a paraplegic, but it just isn't right to compare circumstances.  Each of us lives life based on personal experiences, the ability to cope and the resolve to make the most out of our own situation. 

[MooseMom]

We are no more "warriors" than anyone else facing adversities in life.

Oh, thanks so much for posting this!

I have a son who is on the autistic spectrum, and when he was young and we were really struggling, so many moms with "neural normal" kids would tell me how brave I was.  I so hated that that I really had to hold my tongue.

Just the other day I went to have my annual eye exam.  I saw an optometrist I had not seen before, so once again I had to explain my meds and my medical history, and as I told her about my transplant and the drugs I take, she told me how brave (that word again) I was.  I know a woman who is only in her 40s and is having to cut back on her work hours because her MS is worsening.  She will never get better, only worse.  I know so many people who have chronic problems of all sorts.  We all have to be "warriors", but I can guarandamntee you that we all of us have our hours of despair, anger and fear.  And if everyone could cope with what God gives us, there would be no suicide and no psychiatrists and no psychologists and no one prescribing anti-depressants.  It is nearly impossible to be a tough "warrior" 24/7/365.

[PatDowns]

And if everyone could cope with what God gives us, there would be no suicide and no psychiatrists and no psychologists and no one prescribing anti-depressants.  It is nearly impossible to be a tough "warrior" 24/7/365.

I agree with all you have said except this.  Psychiatrists, psychologists and anti-depressants are there to help some of us cope with life's ills.  No different than a cripple relying on crutches or a wheelchair. 

Reminds me of the joke: 

A fellow was stuck on his rooftop in a flood. He was praying to G-d for help.  Soon a man in a rowboat came by and the fellow shouted to the man on the roof, "Jump in, I can save you." The stranded fellow shouted back, "No, it's OK, I'm praying to G-d and he is going to save me."  So the rowboat went on.  Then a motorboat came by. "The fellow in the motorboat shouted, "Jump in, I can save you."  To this the stranded man said, "No thanks, I'm praying to G-d and he is going to save me. I have faith."  So the motorboat went on.  Then a helicopter came by and the pilot shouted down, "Grab this rope and I will lift you to safety."  To this the stranded man again replied, "No thanks, I'm praying to G-d and he is going to save me. I have faith."  So the helicopter reluctantly flew away.  Soon the water rose above the rooftop and the man drowned.  He went to Heaven.  He finally got his chance to discuss this whole situation with G-d, at which point he exclaimed, "I had faith in you but you didn't save me, you let me drown.  I don't understand why!"  To this G-d replied, "I sent you a rowboat and a motorboat and a helicopter, what more did you expect?"

[MooseMom]

PatDowns, I agree with you.  Perhaps it would have been better if I had said "If everyone could cope with what God gives us, there would be no suicides nor NEED for psychiatrists...".

[Simon Dog]

I am grateful that I don't have ALS, MS or any of the degenerative diseases where the only hope one has is for the degeneration to be slows.   Us dialysis types have it easy compared to them.

[drawingdami]

I am grateful that I don't have ALS, MS or any of the degenerative diseases where the only hope one has is for the degeneration to be slows.   Us dialysis types have it easy compared to them.

This can be very true. My mother had MS. She got diagnosed at 44, and was dead by 49. It was a rarer form. Usually MS takes up to 20 years to completely incapacitate you. only a year after diagnosis, my mother was was almost a complete quadriplegic.  Those f years were truly awful to watch and she suffered badly. She died 9  days before her 50th birthday, and two weeks before my 21st. She got sick a year after I got sick. You can imagine what my household was like those years.

I'm about to turn 43, and am thinking of her a lot.

[Simon Dog]

MS comes in 4 forms, some of which can mean minor disability for many years, and some which are much more tragic.    All being said, I'd rather have dialysis than MS.

[cassandra]

But Pat dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.

[PatDowns]

But Pat dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.

Cas - You have me confused.  Please quote where I inferred that "dialysis" is a disease.  Thanks  -  PatDowns

[cassandra]

Oops sorry Pat, you don't at all, I meant  Simon. Forgive me, and don't be confused, I can only blame dialysis-brain-syndrom. So

But Simon, dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.

[Simon Dog]

But Pat dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.

Well said - thank you.

If this forum had a "reputation point" system, I would give you some.   You'll have to settle for my thanks.

[GA_DAWG]

Simon, I agree completely. Anytime someone tells me how sorry they are for my being on dialysis, I try to point out to them there are people with diagnoses for which there is no treatment or far more severe than dialysis.