One of the first challenges I faced after being diagnosed with PKD was getting to ACCEPT that fact. It may sound ridiculously oversimplified, but the way I felt about the diagnosis was the same way I felt about getting a pimple on my face. I wanted it to go away as fast as possible.
As it sunk in that the PKD wasn’t going to go away, I went through the usual self-pity. “Why did this happen to me?” Of course I knew exactly why it happened to me. I inherited from father, who had dies two years before my diagnosis. Shoot! What a revoltin’ development!
And the damn thing was that there was nothing to be done! Nothing at all until the BP became elevated!
Great. I got a disease through no fault of my own that nobody can do anything about. (This was in 1970.)
Talk about powerlessness!
Well, I soon reasoned that since there is nothing I can do about it, at least in the early stages, then (as we say in New York City, “fehgeddaboudit!” ). Which, to a reasonable degree, I did.
I developed a career as a computer programmer, got married, went on vacations, and lived a typical life of a cubicle-dweller.
The PKD was definitely in the background, though not denied. My blood and urine were tested every few months, and everything was as it “should be.”
The point of this narrative is merely my own living version of the “Serenity Prayer.”
For PKD patients, these are the cards that were dealt to you. There’s no “re-deal!”
You are not the only one with a less than fantastic “hand” of cards!
As you progress along your “PKD Odyssey,” take the opportunity to use your computer to connect with other PKD patients, and if possible, get involved with your local PKD Foundation chapter.
It’s a heck of a lot easier to accept your situation when you “travel” on your “Odyssey” with others on the path.
If you are having some difficulty in accepting your disease, give me a holler!
I accept you because I understand and have experienced the sense of being “different.”
Please e-mail me at:
and let’s connect!
Keep the Conversation Going!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Friday, 27. November 2009
Rich: Have you ever read any studies about the psychological effects of inheriting PKD? Like you I saw what happened to my Dad and was diagnosed shortly thereafter. Just wondering if you knew?
Friday, 27. November 2009
Hi, James!
No, not formally. When I was in psychotherapy, the subject of “introjection” came up, about my Dad and other family “events.”
I did study this phenomenon in my NLP training.
This is the phenomenon have “holding on” to a past event and “representing” it consciously and/or unconsciously as if it happened in the immediate past.
So, if you perceived a traumatic event as a young person, that perception remains the same even after many years have passed. The fact that the “younger you” may have had an “immature” perception is not taken into account even though you are now “mature,” and would not have had that earlier perception if you experienced it now.
So if you saw your father suffer at a young age, and didn’t have the “maturity” to process the perception in a mature way, the “imprint” of the perception of the event stays no matter how many years may pass.
In NLP, the process is to “separate” the current “you” and the “younger you” in order to similarly put the “immature” imprint back to the “younger ypu,” and construct a more “mature” perception of the original event in the “current” you.
Aren’t you glad you asked?
Coach Richie Perl
Friday, 27. November 2009
For me, accepting having a ridiculous disease that I can do nothing about is something that I thought I might grow into…..kind of like a child growing into the clothing your mom buys for you when you’re very young one size too large because she ‘knows’ you’ll be able to fit into them sooner or later. However, back in 4th grade my mother bought me ice skates one size too large that required double socks each time that I wore them….I have them still, one size too large for me to wear as intended!
While I still scratch my head from time to time and ponder the ‘why me’, especially since I have zero family history, I have come to terms with the fact that PKD is a huge part of my life and I feel that I have little choice but to make the best of it. Like wearing double socks if I want to skate, I navigate my life through the twists and turns of this illness and face its challenges head on. I try to hold fast to the mindset that PKD will not beat me as long as I stay educated, informed, and proactive in my health care.
So, I suppose this is acceptance…..not always a happy place to be, but certainly a better place than being caught up in the hopelessness and despair that often accompanies chronic diseases such as PKD.
And one last thought….acceptance does not mean giving in or giving up….for me it means fighting to the finish to retain a healthy quality of life.
Karyn
Friday, 27. November 2009
Far as I know, I’m the only one in my family. I have a nicely twisted back, constant muscle spasms and misaligned hips, inherited from my father’s side, and cycts on reproductive organs, inherited from my mother. Both already caused random back pain (until the surgery removing the latter). Throw in the kidneys, and there were days I couldn’t even stand to live, much less stand to stand. The kidney thing was a convenient scapegoat, but it was hardly the main cause for my being unable to do things I could do even 10 years ago.
I’ve accepted this, though; it’s almost become a non-issue. It really is just “one more thing” for me, since its impact on my life is actually less than in combination with other things. Mostly, it just means the back pain radiates out a little farther to each side and higher up my back.
Well, that’s not quite true. I developed high blood pressure as a direct result, and I’ve had probably gallons of blood taken from me, and as much pain as I was in every month until my surgery, nothing beat the feeling of having a kidney cyst burst. Not even surgery. Although, to be fair, morphine was involved with the surgery.
My clothes don’t fit properly anymore; I have a gut, where I never have before, even when I weighed more than I do now; I get nauseous at random, it seems; I can’t enjoy the foods I used to because they make me feel ill; sometimes, I can’t sleep because lying on my stomach (the only way I can fall asleep) makes my back, in the kidney region, hurt.
Hmm. Maybe I’m not quite at acceptance, yet. Still feeling pretty bitter about that stuff.
Monday, 30. November 2009
Hi, Karyn!
Your last sentence sums up the point I’m making!
“Acceptance” is not “resignation!”
You acknowledge that you have the disease and carry on with that understanding.
In no way does “acceptance” equate to “complacency,” or “being at peace with it.”
On the contrary!
Acceptance hopefully leads to pro-activity in terms of education, self-knowledge and self-care!
Because we “accept” our disease, we do not “deny” its effects!
That’s why you’re so active and contribute so much!
Peace and Blessings!
Coach Richie Perl
Monday, 30. November 2009
Hi, Lisa!
Yes, you have a lot to be bitter about.
You didn’t ask or create the situation you’re in.
And, yes, a burst cyst hurts like hell! I’ve had one! (Fortunately, just one!)
I’m curious as to where you are on your PKD Odyssey.
My nausea went away when I went on dialysis.
Keep the conversation going!
Peace and Blessings!
Coach Richie Perl
Monday, 30. November 2009
@ Karyn:
I like your analogy with the ice skates. Made me want to keep reading – not that I would have stopped. Your final sentence for me is something I aspire to.
“…acceptance does not mean giving in or giving up….for me it means fighting to the finish to retain a healthy quality of life.”
I’ve often felt the same way about other things. I haven’t quite reached it for my PKD.
@ Richie:
I’m still angry, I suppose, about everything. I think I’m trying to deal with my myriad issues one at a time, and it’s not working well. Just overwhelmed, I suppose, they’re not all physical. Without health insurance, I’m pretty much limited to what I can do, so I’m trying to deal with the most pressing first. PKD isn’t it. Over two years with out-of-control hypertension and no testing; probably not a good thing, but it’s what I can afford.
I think, in addition to being angry about having PKD, and having next-to no personal support system, I’m also angry about living in a place where, as much money as we supposedly make, we can’t take care of our own people. I’m angry about the fact that, but for medical care, I could be out there participating and contributing, instead of heading for becoming yet another burden.
Physically, I feel okay; at least, no worse than I have in the past couple years. The nausea is irritating, but if I take enough antacid (Prilosec or high dose of Pepcid), and take my time eating, then it’s usually okay for a couple days. Actually, even that’s really irritating, because I’m eating smaller meals, but still haven’t lost a pound…
Tuesday, 1. December 2009
Hi, Lisa!
I wasn’t aware that you don’t have health insurance. That’s a tough obstacle to overcome.
I’ve discussed anger before. In your case, it seems that you don’t have any constructive outlet for that anger. Or maybe you do!
Lisa, obviously I don’t know you. But I am going to be a bit presumptuous. I would like to make a suggestion to you:
MEDITATE! Meditation, after a while, will reduce the level of your anger and may lower your BP somewhat.
And it’s free!
I wish there was something I could do to decrease the level of frustration you’re dealing with. But I can’t. Only you can, by adjusting your attitude to one that fllowws the “Serenity Prayer.”
One Day At A Time, Lisa!
Peace and Blessings!
Coach Richie Perl
Tuesday, 1. December 2009
I’ve tried meditation, several times. It’s actually more frustrating for me. I can do it with help, but I can’t seem to do it on my own. Music helps, a lot, as does reading, photography, writing and cooking – although it does get a little frustrating doing that for one.
I find ways to channel my frustration and anger into something constructive. It’s not 100%, but it’s far better than just hanging around being pissed. That’s probably why, even though I am frustrated and angry (heartburn took my voice, too), I’m not constantly aware of my problems. Dwelling on them does me no good.
Wednesday, 2. December 2009
Hi, Lisa!
I’m curious about something.
(And you certainly don’t owe me an answer!)
How is your social life in Colorado?
And, how are you doing with your accounting “career?”
Take care!
Coach Richie Perl