Support.
Think of a physical structure. A bridge. The steel columns and beams that hold up the roadway and anchor the bridge into the ground.
Think of the weight of the vehicles on the bridge. Think of the weight of the beams and columns themselves. We often forget that the support structures indeed have to support themselves!
We are all dependent on support. There may be individuals who are completely self-sufficient, but I don’t know of any.
Polycystic Kidney Disease patients, (as well as people with other diseases) have need for additional support.
The medical team, obviously, is the major source of support. And, based on comments made by PKD patients, such support, in conjunction with the insurance industry, is often not as supportive as it could be.
There is a need for social support. A PKD patient may need a friend to run an errand for him/her, (like picking up meds!).
Sometimes, a patient needs someone to cry to. There are days when the burden gets too much to bear. Lucky is the patient who has such a person in his/her life.
Lucky also is the patient who has people in his/her life who aren’t frustrated with the obstacles that he/she faces and do put up with the “stuff.”
Consider the PKD who has children. Who supports whom? PKD affects the patient and the family in many ways. Think of the guilt and anger that is felt in “passing the disease” to one’s children. Think of the anger the child feels when find out the parent “gave” him/her the disease.
What kind of support does the PKD patient require to keep him/her from falling into the depths of despair and victimhood…when even his/her own body can’t support life without assistance?
It takes the support of people who know the Odyssey. People who have the understanding of what it’s like to get around in life feeling sick, or being unable to eat and drink what everybody else is eating and drinking. People who have the patience to deal with the physical, mental, emotional ,and spiritual fatigue that PKD patients often live with.
If you, the PKD patient, feel you’re not getting the emotional support that you seem to need, wjy not drop me a line at:
As you can tell, I like to write.
I WILL respond! And who knows, you may actually get some real support!
Peace and Blessings!
Coach Richie Perl
This is the first PKD site that did not make me want to give up and call it a day. Most are so depressing and down grading that it makes you want to give up all hope.
I was diagnosed 5 years ago and up until this past month was the healthiest person I know with PKD. Acutally I think I still am, but my doc ( a great guy) let me know my last test results showed a slight decrease in kidney function. My husband is fine with it, my doc is fine with it, I however have had a bad reaction to it. I think I was living in a world of denial that I would be one of the 40 % that did not have serious issues from this disease. I am a bit thrown. You have to understand that I never even get colds. Everyone wishes they were as healthy as me. But it feels as though there are two “me’s”. The healthy every day me, and the PKD me. Try as I might I can’t wrap my mind around how to think and feel about this.
Hi.Liza!
You actually hit the nail on the head!
There are “two you’s,” but the healthy,every day “you” is no more. That “you” no longer exists in the present.
However, it does exist in your past. This “past, healthy, every day you” will always be accessible to you in your memory, and you will access her often.
Give yourself the gift of time to get used to your “new self.” Have no fear–she’s very much like your “old self.” She’s just on a new adventure, with plenty of company. Your on the “PKD Odyssey,” and it won’t be dull!
I’m sure your “new self” has courage, optimism, and “positive expectancy!”
Contact me again if you want to discuss your “new self.”
Liza, I’d like to introduce you to Liza! I’m sure you’ll like her a lot!
Peace and Blessings!
Coach Richie Perl