Comments for The Inner Game of PKD http://innergameofpkd.com Easing Your Journey On Your PKD Odyssey Wed, 03 Mar 2010 18:46:50 +0000 http://wordpress.org/?v=2.9.2 hourly 1 Comment on Polycystic Kidney Disease: What Are You Tolerating? by CoachRichie http://innergameofpkd.com/2010/03/01/polycystic-kidney-disease-what-are-you-tolerating/comment-page-1/#comment-168 CoachRichie Wed, 03 Mar 2010 18:46:50 +0000 http://innergameofpkd.com/?p=495#comment-168 Wow, Christi! What a story! You're an embodiment of what I'm trying to "preach!" You very clearly didn't sell yourself short! Look what happened in the last four years. It must be exciting to contemplate what the next four years might bring! Hopefully you are making your story known to others with PKD. Many need to hear it. Best of luck in future endeavors! And, maybe you might wish to keep me informed on your progress! :-) Oh, and thank you for your kind words! Peace and Blessings! Coach Richie Perl Wow, Christi!

What a story!
You’re an embodiment of what I’m trying to “preach!”
You very clearly didn’t sell yourself short!

Look what happened in the last four years. It must be exciting to contemplate what the next four years might bring!

Hopefully you are making your story known to others with PKD. Many need to hear it.

Best of luck in future endeavors!
And, maybe you might wish to keep me informed on your progress! :-)

Oh, and thank you for your kind words!

Peace and Blessings!
Coach Richie Perl

]]> Comment on Polycystic Kidney Disease: What Are You Tolerating? by Christi http://innergameofpkd.com/2010/03/01/polycystic-kidney-disease-what-are-you-tolerating/comment-page-1/#comment-167 Christi Tue, 02 Mar 2010 23:56:00 +0000 http://innergameofpkd.com/?p=495#comment-167 Miracles are possible! Four years ago, this month, I was diagnosed with PKD. At that time, I was losing a child I so wanted, I had a thyroid problem (I weighed 115 lbs.), my gall bladder hurt and I found out my ex was cheating. I went to be retested for PKD on the assumption that I was just ruling it out. I had been tested when I was in my early 20's and it didn't show up then. Needless to say, the ultrasound took a lot longer than I expected, and I have cysts on most of my internal organs. At that point, LIFE REALLY SUCKED! Four years later, I don't tolerate much! I don't have anymore issues with my thyroid, I had my gall bladder removed, I've learned to accept that one beautiful child is plenty, and most of the time I feel alright...and have I ever learned to communicate with my doctors! I still have a sinking feeling when the month of March comes along, (Marchaphobia), so I overbook myself and become quite exhausted, oh, and then it's April :) Honestly, I think my Marchaphobia is on it's way out too. It was very short lived this year. And sometimes I actually feel great! I'm making a career change that I couldn't manage four years ago, I'm even considering starting on another degree. My passion for life has returned. I don't know what tomorrow will bring. Then again, who really does. I learn as much as a person can so that I can be as healthy with this disease as I possibly can. I want to thank you, Richie, for being so open about your experience. It has lessened my fear on countless occasions. I'm glad you're able to write again ;) Miracles are possible! Four years ago, this month, I was diagnosed with PKD. At that time, I was losing a child I so wanted, I had a thyroid problem (I weighed 115 lbs.), my gall bladder hurt and I found out my ex was cheating. I went to be retested for PKD on the assumption that I was just ruling it out. I had been tested when I was in my early 20’s and it didn’t show up then. Needless to say, the ultrasound took a lot longer than I expected, and I have cysts on most of my internal organs. At that point, LIFE REALLY SUCKED!

Four years later, I don’t tolerate much! I don’t have anymore issues with my thyroid, I had my gall bladder removed, I’ve learned to accept that one beautiful child is plenty, and most of the time I feel alright…and have I ever learned to communicate with my doctors!

I still have a sinking feeling when the month of March comes along, (Marchaphobia), so I overbook myself and become quite exhausted, oh, and then it’s April :) Honestly, I think my Marchaphobia is on it’s way out too. It was very short lived this year.

And sometimes I actually feel great! I’m making a career change that I couldn’t manage four years ago, I’m even considering starting on another degree. My passion for life has returned. I don’t know what tomorrow will bring. Then again, who really does. I learn as much as a person can so that I can be as healthy with this disease as I possibly can.

I want to thank you, Richie, for being so open about your experience. It has lessened my fear on countless occasions. I’m glad you’re able to write again ;)

]]> Comment on Struggles of A Polycystic Kidney Disease Patient – Part 3 by CoachRichie http://innergameofpkd.com/2009/12/28/struggles-of-a-polycystic-kidney-disease-patient-part-3/comment-page-1/#comment-159 CoachRichie Fri, 26 Feb 2010 15:46:38 +0000 http://innergameofpkd.com/?p=384#comment-159 Hi, Amy! Sorry you're experiencing your symptoms. Unfortunately that's part of the PKD Odyssey. Considering you were diagnosed only a year ago, your disease seems to have been somewhat advanced. The fact is, you've had PKD all your life. Yes, the symptoms are signs of progression (or...deterioration!) It seems to me that you might consider doing some more research on PKD. THere are so many sources of on-line info that I couldn't list them here. Start with the PKD Foundation if you haven't already done so at www.pkdcure.org for your research. Please let me know if you need further assistance on your PKD Odyssey, especially in the area of coping with your disease! Peace and Blessings! Coach Richie Perl Hi, Amy!

Sorry you’re experiencing your symptoms. Unfortunately that’s part of the PKD Odyssey.
Considering you were diagnosed only a year ago, your disease seems to have been somewhat advanced.
The fact is, you’ve had PKD all your life.

Yes, the symptoms are signs of progression (or…deterioration!)

It seems to me that you might consider doing some more research on PKD. THere are so many sources of on-line info that I couldn’t list them here.

Start with the PKD Foundation if you haven’t already done so at
http://www.pkdcure.org for your research.

Please let me know if you need further assistance on your PKD Odyssey, especially in the area of coping with your disease!

Peace and Blessings!
Coach Richie Perl

]]> Comment on Struggles of A Polycystic Kidney Disease Patient – Part 3 by Amy http://innergameofpkd.com/2009/12/28/struggles-of-a-polycystic-kidney-disease-patient-part-3/comment-page-1/#comment-158 Amy Fri, 26 Feb 2010 10:30:13 +0000 http://innergameofpkd.com/?p=384#comment-158 Wow, some great information. I was diagnosed with PKD about a year ago. I've had two cysts drained and 1 attempted removal due to location and complications. Up until the past few months, I've had no symptoms. Recently I've noticed my hair is falling out rapidly, nails are paper thin and brittle, leg cramps at night that are unbearable and constant fatigue. (I'm usually a very energetic person). Is this a sign of complications or progression of the PKD? This is the first I have heard of these symptoms being related. Thank you for your blog and much health and happiness. Amy Wow, some great information. I was diagnosed with PKD about a year ago. I’ve had two cysts drained and 1 attempted removal due to location and complications. Up until the past few months, I’ve had no symptoms. Recently I’ve noticed my hair is falling out rapidly, nails are paper thin and brittle, leg cramps at night that are unbearable and constant fatigue. (I’m usually a very energetic person). Is this a sign of complications or progression of the PKD? This is the first I have heard of these symptoms being related.
Thank you for your blog and much health and happiness.
Amy

]]> Comment on Polycystic Kidney Disease and The Mind by CoachRichie http://innergameofpkd.com/2010/01/28/polycystic-kidney-disease-and-the-mind/comment-page-1/#comment-133 CoachRichie Tue, 02 Feb 2010 15:27:48 +0000 http://innergameofpkd.com/?p=444#comment-133 Steve, Yes! That's the way it works! THanks for your comments! Peace and Blessings! Coach Richie Perl Steve,

Yes! That’s the way it works!
THanks for your comments!

Peace and Blessings!
Coach Richie Perl

]]> Comment on What Keeps a Polycystic Kidney Disease Patient Up At Night? by Steve Jackson http://innergameofpkd.com/2010/01/21/what-keeps-a-polycystic-kidney-disease-patient-up-at-night/comment-page-1/#comment-132 Steve Jackson Mon, 01 Feb 2010 23:26:33 +0000 http://innergameofpkd.com/?p=431#comment-132 @ Lisa I went 2 full years with on insurance,my nef keep me in B.P.meds with samples that he had in his office pluse he reduced fees till I got coverage,try talking to your doc and tell himor her the whole story they ma help you out. Good luck and God Bless Steve @ Lisa
I went 2 full years with on insurance,my nef keep me in B.P.meds with samples that he had in his office pluse he reduced fees till I got coverage,try talking to your doc and tell himor her the whole story they ma help you out.
Good luck and God Bless
Steve

]]> Comment on Polycystic Kidney Disease and The Mind by Steve Jackson http://innergameofpkd.com/2010/01/28/polycystic-kidney-disease-and-the-mind/comment-page-1/#comment-131 Steve Jackson Mon, 01 Feb 2010 23:21:55 +0000 http://innergameofpkd.com/?p=444#comment-131 Yes having PKD sucks and not havining any kidneys due it sucks also,I don't let it get me down tho,I just look in the mirror in the mornings thank God I'm still here and figurge there is someone somewhere worse off than me. Just keep smiling it make people wonder what your thinking about. God blees you coach Steve Yes having PKD sucks and not havining any kidneys due it sucks also,I don’t let it get me down tho,I just look in the mirror in the mornings thank God I’m still here and figurge there is someone somewhere worse off than me.
Just keep smiling it make people wonder what your thinking about.
God blees you coach
Steve

]]> Comment on Polycystic Kidney Disease and The Mind by CoachRichie http://innergameofpkd.com/2010/01/28/polycystic-kidney-disease-and-the-mind/comment-page-1/#comment-130 CoachRichie Mon, 01 Feb 2010 21:24:25 +0000 http://innergameofpkd.com/?p=444#comment-130 I'm Curious. Who determines a) "the reality of their condition" and b) what that "feeling" is, and where is it written that those, or any "feelings" are fixed? I don't understand your statement "the profound disconnect between the surrounding reality which should logically drive the patient’s mood in one direction, and the inner reality of the patient which was driving the patient’s mood in the opposite direction." I gather then, you have never tried to "cheer up" someone, or have never been "cheered up" by someone else! In your scenario, attempting to "cheer up" someone would tantamount to a crime! In my posts, I never say that having PKD is "good." I say it sucks. But people who lived before either of us were born, and people who will be around after we are gone, have OVERCOME the "suckiness" of adversity and lived fulfilling lives. You certainly have the right to wallow in misery, if that's your choice. It isn't mine. Peace and Blessings! Coach Richie Perl I’m Curious.

Who determines a) “the reality of their condition” and
b) what that “feeling” is, and

where is it written that those, or any “feelings” are fixed?

I don’t understand your statement “the profound disconnect between the surrounding reality which should logically drive the patient’s mood in one direction, and the inner reality of the patient which was driving the patient’s mood in the opposite direction.”

I gather then, you have never tried to “cheer up” someone, or have never been “cheered up” by someone else!
In your scenario, attempting to “cheer up” someone would tantamount to a crime!

In my posts, I never say that having PKD is “good.” I say it sucks.
But people who lived before either of us were born, and people who will be around after we are gone, have OVERCOME the “suckiness” of adversity and lived fulfilling lives.

You certainly have the right to wallow in misery, if that’s your choice.
It isn’t mine.

Peace and Blessings!
Coach Richie Perl

]]> Comment on Polycystic Kidney Disease and The Mind by somerville http://innergameofpkd.com/2010/01/28/polycystic-kidney-disease-and-the-mind/comment-page-1/#comment-128 somerville Sat, 30 Jan 2010 21:11:23 +0000 http://innergameofpkd.com/?p=444#comment-128 The worst of all psychiatric illnesses is psychosis, defined as a profound disconnect between the mental state of the patient and the surrounding reality. To avoid this, the only realistic strategy is to try to understand and respond to the reality around you in the most objectively accurate way possible. If you go around telling yourself lies about how hideous your life with PKD actually is, you are destroying your human dignity by reducing yourself to the level of a psychotic in order to feel happy when there is no objective justification for that mood. You then have what Manfred Bleuler in 1911 first described as 'schizo-phrenia,' or 'divided drives,' referring to the profound disconnect between the surrounding reality which should logically drive the patient's mood in one direction, and the inner reality of the patient which was driving the patient's mood in the opposite direction. I think it is preferable for patients to maintain their sanity by honestly feeling the reality of their condition rather than making themselves insane with idiotic 'life coaching skills.' The worst of all psychiatric illnesses is psychosis, defined as a profound disconnect between the mental state of the patient and the surrounding reality. To avoid this, the only realistic strategy is to try to understand and respond to the reality around you in the most objectively accurate way possible. If you go around telling yourself lies about how hideous your life with PKD actually is, you are destroying your human dignity by reducing yourself to the level of a psychotic in order to feel happy when there is no objective justification for that mood. You then have what Manfred Bleuler in 1911 first described as ’schizo-phrenia,’ or ‘divided drives,’ referring to the profound disconnect between the surrounding reality which should logically drive the patient’s mood in one direction, and the inner reality of the patient which was driving the patient’s mood in the opposite direction. I think it is preferable for patients to maintain their sanity by honestly feeling the reality of their condition rather than making themselves insane with idiotic ‘life coaching skills.’

]]> Comment on What Keeps a Polycystic Kidney Disease Patient Up At Night? by Lisa http://innergameofpkd.com/2010/01/21/what-keeps-a-polycystic-kidney-disease-patient-up-at-night/comment-page-1/#comment-126 Lisa Tue, 26 Jan 2010 00:54:17 +0000 http://innergameofpkd.com/?p=431#comment-126 I've been trying to find some sort of coverage for nearly two years, actually. There is a program here in Colorado, but you have to have a hard rejection from another insurer, and they won't give that - they're all so desperate for customers. Basically, I've hit a point where I'm pretty much giving up; at least, with the kidney thing. I'm working with the other unrelated (or indirectly related) issues so that maybe I can find myself in a position where I can take care of things once again. So I guess it's giving up but not totally. I’ve been trying to find some sort of coverage for nearly two years, actually. There is a program here in Colorado, but you have to have a hard rejection from another insurer, and they won’t give that – they’re all so desperate for customers.

Basically, I’ve hit a point where I’m pretty much giving up; at least, with the kidney thing. I’m working with the other unrelated (or indirectly related) issues so that maybe I can find myself in a position where I can take care of things once again.

So I guess it’s giving up but not totally.

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