Having traveled a “far piece” on the PKD Odyssey, and confronted the many challenges that are encountered on that Odyssey, I am certainly aware of much of what you may be going through.
The challenge which I am about to present to you is one, that, if you accept it, will benefit both you and me.
I challenge you to tell me, through the “comments’ box or directly to me by e-mail at
exactly and specifically what your biggest obstacle is in your PKD Odyssey that is keeping you from having the the lifestyle you desire.
Now, I’m speaking about specific issues, like lack of social interaction, a feeling that you aren’t understood or accepted by friends and family, fear from admitting to people that you have the disease, fear of the future because your parent had a difficult time on his/her Odyssey.
What is the main block that is stopping you from feeling good about yourself?
(Please don’t tell me lack of money. That’s an issue for many of us!)
If you let me know, I will do my best to personally to “coach” you to find a resolution to your obstacle (with your permission.)
The benefit for me is that, with your help, I can “walk my talk” with you.
It’s one thing for me to write this blog, it’s another thing for me to actually demonstrate what I do to assist PKD patients overcome some of the attitudinal challenges that they have.
Let’s get together on this. I’m not charging for this. I really would like to connect with you for mutual beneficial friendships.
I welcome your PKD challenges. I so want to use my experience to ease your burdens.
Please give me an opportunity to serve you!
info@innergameofpkd.com is my e-mail!
Hope to hear from you!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Richie, I guess I would have to say the biggest obstacle with PKD for me would be the medications and the costs which affect other aspects in my life…
Hi, Debbie!
Believe me, I understand! Even with a good health plan (so far!) much of my expenses are for prescriptions and other medical expenses. In fact, my insurance no longer fully pays for my neph visits!
Clearly, adjustments in lifestyles are to be made. Things like, books from the library instead of buying them. Downloading music mp3s and burning them to CD-Rs instead of purchasing the actual CDs.
I rarely go to movies. But, I certainly get enough entertainment from cable TV. And when I’m sick of what TV offers, I play chess on my chess computer.
In other words, you (the general “you”) can find a relatively inexpensive hobby/activity that absorbs your interest and enhances the quality of your life.
I wishI could go to many Broadway shows. But I can’t. So I check out PBS broadcasts.
I think you get the picture!
Your assignment, Debbie, if you choose to accept it, is to write down activities that you have enjoyed in the recent past and determine if one or two of them are enjoyable and not too costly to engage in!
The old-fashioned “arts and crafts” types of hobbies have always engaged many people to exercise their creativity. Perhaps that’s an area for you to explore! Music? (Aside from your hubby! You don’t want competition!!!)
THanks for your comment!
I hope I’ve given you some ideas!
Peace and Blessings!
Coach Richie Perl
Richie,
I have 2 obstacles right now in my life:
1) I do feel much like ‘damaged goods.’
My husband left me because he couldn’t take the disease part of me any longer. The burden of changes, costs of medical bills, trips to the ER, etc. My friends (of which I only have a select few) try to understand but I always end up staring into an empty face when the subject comes up. And, now that I’m single, I don’t even consider dating. That kind of rejection is just too much for me.
2) My Odyssey is very painful, on a daily basis. I have been in pain management for 4 years and the stigma that goes with that is far worse than just having the disease. What’s more, the people who I feel the worst around are the very medical professionals who are supposed to help me. The shame of having to rely on pain management is amplified by the fact that in my home town, there are no doctors who treat chronic pain, and have told me this is due to the liability involved. I’m still functioning as an adult. I want to work and take care of my family. But, no meds usually means bed for days, constant pain, no energy and deep depression. I feel shame and most days just wish I could sleep on and on and on…
Hi, Gwen!
Thank you so much for your comment.
First of all, let me congratulate you on maintaining your blog. I’m sure you some psychological relief by expressing your feelings in writing.
Gwen, from the “world’s” pint of view, you are “damaged goods.” I certainly understand and empathize with your feeling of isolation. And yes, no one in your situation would put herself in a place where further rejection will probably occur.
So, are you in a position where you can at least be in contact (personally or, perhaps, on-line) with people who will accept you? Who understand that your life is a struggle literally to get out of bed? Most of us NEED a rather high level of acceptance. Being a blogger, I’m sure you’re aware of the on-line communities for PKD patients. I hope you’re taking advantage of them.
Nw, Gwen, I need an education from you. You say that there is a stigma that goes with being on pain management. Can you please explain that to me?
Can you also help me understand this “shame” that you feel?
You did nothing “wrong” to have PKD! You did nothing “wrong” to experience pain!
From my point of view, the fact that you are blogging about your situation, and that you took the effort to post this comment tells me that you give a “damn” about your life! You still have the “inner fire!”
Depression is one thing. Shame is something else.
Gwen, I would say that you have NOTHING to be ashamed of!
So, again, I invite you to tell me more about your “stigma” and “shame.”
It’s tough enough to live with the “burden” of PKD, pain. and isolation. I believe that you don’t need to carry the “cross” of “stigma” and “shame” also.
Keep the Conversation going!
Coach Richie Perl
The stigma and shame. I will demonstrate with an actual experience I had last year and then another this year:
1) Last year I was visiting in-laws with the husband. after a dinner one evening there were several of the female family members sitting around a table outside in the cool evening air casually discussing their aging grandmother. The grandmother had recently taken a spill and had a serious injury requiring pain medication (percocet to be exact). Each and every one of these women were joking abut how the grandmother was becoming an addict. They told stories of hiding her meds from her so she would quit taking them. They spoke with her doctor telling him they thought she really didn’t need them. This grandmother, who raised most of these women was in her 70′s and in pain. I saw it on her face and in her mannerisms and heard it in her voice. Yet all these women wanted to do was joke and kid and poke fun at their little “druggie” grandmother. The injury she sustained was to be a very long-term issue and a painful one. I was in shock, sat there in complete silence and later, secretly cried for her. I wouldn’t have dared spoken up about my own pain issues lest I become the next target. Why would anyone be denied pain relief? Why would her own family make such a joke of this woman’s hurt?
2) This year after moving back to TX from Jacksonville, FL, losing my health coverage and having to resort to a county health clinic for treatment, I was told by the only health practitioner in my county, that he did not believe in the treatment of chronic pain. And I qoute: “I can’t give you pain medication. I can’t take the word of another doctor that you even have this disease. There’s too much liability in it for me and I could lose my license if I give you pain meds.” I was in shock. My Doctor back in Jacksonville was with the Mayo Clinic and had sent me off on the move back to TX with a one months supply of medication so I could get established with another doc. The county doctor had my Mayo records in his hands while telling me that he could not and would not treat my pain. I left there humiliated.
Each subsequent clinic, hospital and medical facility I have called all say the same thing…they don’t accept ‘drug-seekers.’ In my opinion, it’s the no insurance thing that throws up a red flag to them. Hence the shame and stigma.
Does this explain?
Hi, Gwen!
Thank you for responding and sharing!
Yes. It explains. But it doesn’t validate.
Consider a scenario where you’re experiencing what you’re experiencing, but you’re in a community of people who understand and empathize. People who know physical pain. Would you feel the same way? I hope you wouldn’t!
Just because family members think that taking pain killers is for the “high” doesn’t make it so. And, although I know that writing about how one “should” feel is merely an academic exercise, I ask you to consider the suggestion that you are above accepting the opinions of ignorant individual as “Gospel Truth!”
Clearly your Jacksonville doctor didn’t think that it was shameful for you to take pain medication!
(Please don’t misunderstand me. I know you’re in the circle of people that your in. That’s not easy to change. I am deeply sorry that you don’t seem to be accepted for who you are, a fine human being who happens to have a disease which includes a symptom of pain. Just remember why people generally put other people down: usually to build themselves up.)
Some questions: Can you find a community (live or on-line) of people who will accept you?
Can your Jacksonville doctor send valid medical records to your county clinic?
Ultimately, Gwen, what I’m trying to communicate is that you don’t have to let other people “label” you.
I wish I had a magic wand to make things beter for you. But I don’t. All I can do is to let you know that you are quite a battler!
And I’m on your side!
Peace and Blessings!
Coach Richie Perl
If you’ll notice, I did mention in my post that all my potential docs here have copies of my records from Mayo and I always ask if they’d like copies from Baylor, as well. My condition has been well documented over many, many years with endless CAT scans, IVP’s, x-rays, ultrasounds and MRI. There is no shortage of records. And I have an open, standing, signed records release form with Mayo. The world’s best Primary Care Doc in the entire Universe is Dr. Chad Masters at Mayo. He treated me like a real and whole person. The next would be Dr. David Martin, Nephrologist with The North Texas Kidney Consultants through Baylor Dallas. Just had to send out the ‘props.’
I have been told everything from “…oh you’ve pulled something in your back,” to “There’s no possible way you can have cysts AND stones…it just doesn’t happen that way.” These quotes have come from Nephrologists my friend. Now, I’m no medical expert, but I can google the disease and find out more in 10 minutes than most of the doctors out here in hickville hell could come up with in 3 days.
I have attempted to get involved online with a group but what I usually find is that a person or two will make a post then everything just stops. Not much support.
Any suggestions?