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gkcoley
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« on: August 31, 2011, 10:59:56 PM »

Every dialysis patient has rough patches dealing emotionally, how do you deal?
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RichardMEL
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« Reply #1 on: September 01, 2011, 02:26:06 AM »

If life throws you lemons, make lemonade....

oh wait, that's fluid. Damm!!

Seriously though (yes I can be serious)... a sense of humour really helps. I always try and focus on the positives I have when I think about how rotten things have been here and there over the journey. I guess I've always felt that it's better to try and make the best of a bad situation rather than wallow in what's going bad. I reckon it doesn't help anyone,s pecially me, to get all depressed and sorry for myself specially when there's probably little I can do about it anyway.

Yeah, I know.. that doesn't help when you feel so bad/sick/fed up/frustrated/like there's no options/sad/angry and so on. I understand that, and I also say that I'm FAR from perfect myself, and there are times when it does all get a bit much.. and when I realise I'm in that spot, I do try and remind myself of my above phiisiophy.

When I feel low emotionally I try to focus on positive goals, things that I'm looking forward to, or that perhaps I can do to treat myself, or help myself feel better. When I was on  D it was often things like thinking about all the things I'd get to do WHEN I got that call - like travel, eating soups and ice cream and lots of drinks etc, etc or perhaps more attainable, say having a favourite meal, or getting home to snuggle with my kitty (or on the occasion I could, my gf hehe  >:D). I always tried to not make D the focus of my life, or kidney disease more generally. Yes, it's always a part of my life (even with my wonderful transplant) and always will be but I'll be damned if I'm going to let it control my life!! Everything is a challenge to be overcome - some easier than others.

it builds character right? Everyone here knows I'm overflowing with "character" (just ask the women  >:D).

That's just my twl cents anyway.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Rerun
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« Reply #2 on: September 01, 2011, 03:03:23 AM »

My faith (Christian) gives me the strength to go on and the "alternative" is probably pretty good.

That is how I deal.
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kristina
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« Reply #3 on: September 01, 2011, 04:18:28 AM »

I am still pre-Dialysis with a 10-12% kidney-function and no idea whether or not my kidneys get worse or better,
so, “sitting on the fence” so-to-speak, has it’s very dark moments,
especially since I was told in August 2006 that I only have 6 months to go until Dialysis
and I try ever so hard to stop my kidneys from deteriorating further against all the odds...

What helps me dealing with these rough emotional patches plus the stress of being left without any medical care is my music-collection.

I have a collection of classical records which I have sorted in special “departments” for every possible mood,
including the very dark moments, and I listen to these records and it helps to lift me up emotionally.

Favourites are Bach, Händel, Purcell, Scarlatti, Corelli and many other composers of that time etc.

In my “darkest moments” Tchaikovsky comes into his own,
especially his emotional struggles portrayed in his 5th and 6th symphonies
and then there are Beethoven’s symphonies; Beethoven composed against all the odds,
including his deafness and he "talks about" his own struggles, especially in his 7th symphony.

It also helps me to go for a little walk and observe everything, or visit a Museum and study paintings.
(Museums are a perfect place to go for a little walk
because there are so many possibilities to sit down and rest for a while
whilst studying a painting at the same time).

It also helps me to try and concentrate and learn a new piece of music on the piano-forte.
At the moment I study Elgar’s “Nimrod” and it sounds surprisingly beautiful on the piano-forte.
This is a fascinating piece of music and “comes from Elgar’s “heart and soul”
and Elgar dedicated “Nimrod” to his friend August Jäger
because it was Jäger who always encouraged Elgar to continue composing,
especially in Elgar’s “dark moments” when Elgar thought about giving up composing altogether.

This is how I deal with these rough patches and dark emotional moments which unfortunately seem to be a “by-product” of ESRF.

Best wishes from Kristina  :grouphug;

« Last Edit: September 01, 2011, 04:19:57 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
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Gandalf
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« Reply #4 on: September 01, 2011, 04:56:32 AM »

Kristina, how I agree!  I find such incredible solace (and escape) in music - my dark moments are kept company by Tchaikovsky's Pathetique, and the Dvorak Cello Concerto for those really dark times!
I rejoice with Haydn (Credo and Kyrie of the Creation Mass especially!), and on high days and holidays the Bruch Violin Concerto provides my own, glorious festival - a world of colour and transcendence IYKWIM!
Thought I was alone....
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kristina
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« Reply #5 on: September 01, 2011, 05:35:04 AM »


Gandalf, you are so right!
How could I forget Dvorak's Cello Concerto and Bruch's Violin Concerto,
I have one record with Ruggiero Ricci playing his violin and it sounds absolutely divine!

Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
RichardMEL
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« Reply #6 on: September 01, 2011, 06:17:48 AM »

You romantic souls!!!

I actually think Dvorak's Cello concerto is a positive piece and I enjoy it (specially the finale) - not a dark one for me. During MY dark moments I go to the masker of dark, Shostakovich! Beat that, ladies!!  :rofl; Dmitri is my man. It helps that I've met his son of course :)

Getting back on topic - music is a good point, and other diversions. Like during D sessions I'd watch TV or movies *I* enjoy - I'd save up shows I wanted to watch or catch up with so I could concentrte fully on them during dialysis when I wouldn't be (usually, anyway) interupted, and I couldn't go anywhere. Plus it helped to pass the time. Podcasts also helped a lot (and music). I guess it depends on the mood.

More generally focusing on hobbies and interests - be it music, reading, tv, my terrible footy team, whatever.... is a great way to cope with emotionally tough times. Even if it's the distraction of getting upset at another poor performance, sometimes stuff like that can give you some perspective, and every so often, a surprise like a rare unexpected win can lift the spirits in unexpected ways.....
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Brightsky69
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« Reply #7 on: September 01, 2011, 07:07:31 AM »

Jaycee Lee Dugard recently gave an interview to Diane Sawyer and in that interview she said something to the effect of ‘you do what you have to do to survive’
That pretty much sums it up for me & dealing with kidney disease/transplants.
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
jeannea
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« Reply #8 on: September 01, 2011, 07:34:06 AM »

Lots of alcohol. No that's fluid too.

I use crossword puzzles to distract me. It helps me concentrate on something else.

But when I really feel bad, I go sit with my disabled niece. Snuggling her makes me feel better.
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YouDontKnowCecil
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« Reply #9 on: September 01, 2011, 08:23:00 AM »

Being on dialysis and taking care of my diet and medications has become second nature to me. Then again, I have the researcher's mind and I am very analytical. The most important thing is, is to never compare yourself with people who aren't on dialysis. It's not a fair comparison, and should never be made.
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1987 summer (age 9), Renal biopsy confirms kidney disease (Alport Syndrome).
2001 January (age 22), Arterio-venous fistula put in left forearm.
2002 March (age 23), Started in-center hemodialysis (12 years!).
2014 April (age 35), Now training for self home hemodialysis with NxStage.
Poppylicious
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« Reply #10 on: September 01, 2011, 09:50:57 AM »

Every dialysis patient has rough patches dealing emotionally, how do you deal?
My Blokey uses me as his emotional sounding-board.  He gets angry/frustrated/emotional and I half-heartedly pat him on the back and say, 'there, there.'

Hehe.  But seriously, I think Blokey deals with his emotionally-low points in much the same way as Richard.  We try to make sure we have things to look forward to and our weekends are incredibly important to us because they're both work and dialysis free.  This weekend he is looking forward to having some food he should really avoid ...

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
*kana*
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« Reply #11 on: September 01, 2011, 12:57:34 PM »

I just change my life to fit the things I still can do.  I feel blessed to be not given a worse disease thant renal failure. Many people out there have it a lot worse than any dialysis patient and I could my blessings.  I do whatever they tell me, I eat like I should, do my treatments and I keep myself healthy.  Life isnt as wonderful as I would like, but it could be worse.       
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
brandi1leigh
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« Reply #12 on: September 01, 2011, 03:40:34 PM »

I use music to distract me. I vent to my mom. I try to remember it could always be worse. And when I am feeling especially down, I'm not afraid to have a good cry and be sad for a little while. I don't mean that I spend week after week depressed. But I do try and remind myself that it's perfectly reasonable for me to feel sad, be angry, and feel frustrated. Once I acknowledge the feelings, have a good cry (or sometimes a good scream into my pillow); I usually feel better. For a long time, I tried to just suppress all the negative emotions. I would just ignore them and try to put on a happy face all the time. Unfortunately, that doesn't work for me. I can manage to hold them down for a little while, but eventually they just explode out (and usually not at a very convenient time). So I've learned that if I work through them when I first feel down, they pass more quickly.
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kristina
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« Reply #13 on: September 02, 2011, 03:32:31 AM »

You romantic souls!!!

I actually think Dvorak's Cello concerto is a positive piece and I enjoy it (specially the finale) - not a dark one for me. During MY dark moments I go to the masker of dark, Shostakovich! Beat that, ladies!!  :rofl; Dmitri is my man. It helps that I've met his son of course :)

Getting back on topic - music is a good point, and other diversions. Like during D sessions I'd watch TV or movies *I* enjoy - I'd save up shows I wanted to watch or catch up with so I could concentrte fully on them during dialysis when I wouldn't be (usually, anyway) interupted, and I couldn't go anywhere. Plus it helped to pass the time. Podcasts also helped a lot (and music). I guess it depends on the mood.

More generally focusing on hobbies and interests - be it music, reading, tv, my terrible footy team, whatever.... is a great way to cope with emotionally tough times. Even if it's the distraction of getting upset at another poor performance, sometimes stuff like that can give you some perspective, and every so often, a surprise like a rare unexpected win can lift the spirits in unexpected ways.....

Richard, it is very interesting, what you wrote about Shostakovich and his music.
Shostakovich went through his own traumas as a composer who was not particularly liked by Joseph Stalin
and he constantly had to fear for his life and the “knock on the door” as long as Stalin was alive.

Shostakovich was often reduced to compose during the night whilst waiting outside his flat for the “Secret Police”
to arrest him and bring him to Lubyanka.

He sat outside his flat because he did not want to involve his family in his possible arrest.

What he went through during these years reflects very strongly in his music
when he describes the traumas and a total fear during the Stalinistic-oppression
and in his own way shows his world and how he supported his own psychological and physical survival.



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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
RichardMEL
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« Reply #14 on: September 02, 2011, 03:40:54 AM »

Kristina, and you desdcribe almost exactly why Shosty is someone I admire so much - not just because he was a musical genius, but because he lived in a society and situation many of us in the west simply can't contemplate let alone understand. His music speaks volumes, but what really talks to me is that this man did NOT flee. He kept his integrity, as best he could, under threaat/fear of death, or worse for decades.

I find DS's struggle somewhat akin to the struggle with kidney disease (yes folks, FSGS=Stalin!!! lol). You have to face it, and make the most you can of it, and remain true to yourself and NOT buckle in.

This is how I would like to think I live my life - it is certainly an attitude I want to emulate.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
texasstyle
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« Reply #15 on: September 02, 2011, 06:07:42 AM »

offering my thoughts from the spouse's perspective, I see how the struggles everyday. I've always tried to live this thing out by taking full advantage of times that are going well. They may be a month long at times, a week, or sometimes only a part of the day, but they are there. Dialysis is definetly an adjustment in your lifestyle, but don't for get to live LIFE.
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caregiver to husband using in-center dialysis 4 years
kristina
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« Reply #16 on: September 04, 2011, 02:39:42 PM »

Kristina, and you desdcribe almost exactly why Shosty is someone I admire so much - not just because he was a musical genius, but because he lived in a society and situation many of us in the west simply can't contemplate let alone understand. His music speaks volumes, but what really talks to me is that this man did NOT flee. He kept his integrity, as best he could, under threaat/fear of death, or worse for decades.

I find DS's struggle somewhat akin to the struggle with kidney disease (yes folks, FSGS=Stalin!!! lol). You have to face it, and make the most you can of it, and remain true to yourself and NOT buckle in.

This is how I would like to think I live my life - it is certainly an attitude I want to emulate.

Thanks for sharing your thoughts with us, Richard, it is very much appreciated.
It is true; Shostakovich kept his dignity & integrity and it certainly was extremely difficult.

It is interesting to compare his struggle with our ESRF-struggle, and it is true,
we also have to protect our dignity & integrity if we wish to survive.

It may sound strange, but that is exactly why I have no health-care in my pre-Dialysis ESRF:
I would have to barter my dignity & integrity in exchange for health-care and I cannot do that.

Of course, it is claimed that the health-service is “free for all”,
but there is no such thing as a “free lunch”, so-to-speak
and everything has its price, even though many people deny that fact.

Whilst I write applications and try my best to find a positive way forward,
I have to save-up money to pay for my private blood-tests
to check my Creatinine, Urea, Sodium & Potassium,
which I decipher with the help of the Internet.
I do hope that in the near future I can get professional health-care
where a patient is respected and their dignity & integrity is protected.



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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
mcclane
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« Reply #17 on: September 08, 2011, 12:16:01 PM »

my wife and my parents.  I know they care about me alot, and that keeps me going.

But sometimes it is very rough waters (numerous roadblocks in my quest for a transplant).  I guess after all these years, i try to mentally block out the bad stuff and focus on things that make me happy.
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