What is stopping from “going home” for good?

Peace and Blessings!
Coach Richie Perl

Terrific! You’ve demonstrated the idea that “what you focus on, expands!”
Remember when I suggested that you change the “when will’s” to “what has to happen for’s?”

You’ve also demonstrated that constructive activity can lessen the emotional effects of frustration.

Clearly, the suggestion is that the PKD community (including, heaven help us, the Foundation(!) ) focus on constructive action.

There is action concerning going to Washington. Is there also action concerning the medical professionals who al too often are inadequately prepared to assist PKD patients as effectively as is required?

Karyn, your list of frustrations is a GREAT place to start considering action plans!

Perhaps you know the saying, “It is better to light one candle than curse the darkness!”

Peace and Blessings!
Coach Richie Perl

This is one area where I feel very comfortable. I don’t tend to compare myself to others, and I try not to dwell on what I can’t do. When I was first officially diagnosed with ADD, my immediate response was “Great, now that’s confirmed, I know I just have to find a different way.” I got my BA with a 2.6 GPA. Before I took my break, I was working on my MS with a 3.8 GPA. Apparently, something worked.

This, though, I still haven’t figured out what I can do. I’m finding it much harder to deal, because I know that I can no longer exercise like I used to, I can’t hike like I used to, I can’t be nearly as active as I used to, I get sick more often, tired more often, et cetera.

BTW, re: previous post – my blood pressure is exacerbated by my altitude. My house is around 6,600 feet above sea level. When I go home to Cincinnati, all the issues that go with my hypertension lessen or go away.

1. I’m frustrated that I was diagnosed with a crazy, very common, life-threatening disease that no one has ever heard of.

2. I’m frustrated that the support for PKD research from the federal government is peanuts in comparison to diseases that affect far fewer people in our country.

3. I’m frustrated by the fact that our government would rather pay for dialysis than drug therapy for kidney transplant recipients beyond a 36 month period.

4. I’m frustrated by the fact that the media gives PKD very little attention despite the fact that it is more common the cystic fibrosis, muscular dystrophy, sickle cell anemia, and Down’s syndrome combined!

5. I’m frustrated by the fact that so few health care providers treat PKD patients with respect and are mostly ignorant about this disease.

6. I’m frustrated by PKD patients who stick their heads in the sand and prefer to sit back and complain about their disease than take action to help improve the quality of their life as well as others.

7. I’m frustrated by the fact that it takes an eternity to research drug therapies to enhance the quality of life of patients who are suffering and lacking hope.

8. I’m truly saddened by the fact that PKD patients continue to perpetuate this disease and that there is no way to genetically correct the problem prior to the birth of our children.

9. I’m frustrated by the fact that many, many PKD patients have pain management issues for which doctors have no viable treatments.

10. I’m frustrated to know that coming up with this list was way too easy…..

I suppose this means that the negative impact PKD has on us is HUGE and in too many cases totally overwhelming. While this list can go on, and on, and on, I think that venting in this way is far less therapeutic than I had hoped it would be. In fact, it’s giving me a headache, a sure sign my BP is spiking….another charming byproduct of life with a chronic, genetic kidney disease! Therefore, I think I’ll quit while I’m ahead, take a few deep breathes, and get back to that more centered place in my life…..the place where I’m productive, happy, healthy, and advocating for those battling PKD.