Living with Chronic Illness, Muscular Dystrophy, Periodic Paralysis, Celiac Disease, Migraine, Heart Disease, Diabetes

Gentle Pastimes

So many days are a struggle, I decided I needed an easy, gentle hobby to keep things light. So, I'm writing a book called, "Dogs I've Made: Seriously Silly Poems by Rodney Robbins." Here is one that's a bit more mysterious than silly, but I thought you might like it. See if you can tell me what this poem is about.

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(c) 2010 by Rodney Robbins

Like a soft black wind with tender paws
Or a charging creature of the night with teeth
He bounds and slashes
Fear The Great Hunter

Or a charging creature of the night with teeth
Yet, sometimes he sleeps
Fear The Great Hunter
Gentle his touch and tender his caress

Yet, sometimes he sleeps
Till he wakes, groggy, lost in a world of giants
Gentle his touch and tender his caress
He only drinks running water

Till he wakes, groggy, lost in a world of giants
The Great Hunter is under attack
He only drinks running water
The enemy charges, too many, flee!

The Great Hunter is under attack
Defenseless, he shows his belly
The enemy charges, too many, flee!
Suck them in and rip them to shreds

Defenseless, he shows his belly
We live for combat
Suck them in and rip them to shreds
A job well done

We live for combat
The sun shines bright in the window
A job well done
Sleep now, little one, sleep in the sun

This form of poetry is called a pantoum. The rhythm is like gentle waves on the beach. I like them. Do you think you know what this poem is about? Use the "Comment" link below or write to Rodney Robbins here.

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Dear Reader,

You did it! Your copy of my free tip booklet "On Life and Living with Chronic Illness" is on it's way. Your booklet will arrive as an e-mail attachment. When you get my e-mail, most e-mail programs will allow you to open the attached PDF document with a click or double-click of your mouse.

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Questions of comments about the booklet? You can reach me at Rodney@onLIFEandLIVING.com.

Live well, love much, laugh often,
Rodney Robbins
Author, Artist and Playwright

Chronic Illness Booklet Goes to 2nd Edition

My booklet "On Life and Living with Chronic Illness" is going back to the drawing board. Thanks to help from a wonderful graphic designer, I had the booklet all finished. When I went to make copies, I learned the printing cost was going to be $9.50 per booklet! Oops. So, we are making a few changes so you can read the booklet, and apply the questions, at a more reasonable cost. I'm still working to create a downloadable e-book that sells for about $10.00. I'd like to offer the  Ten Question Beads with the booklet for maybe $20.00 or $25.00. Keep checking back. This product is almost ready.

On Life and Living Booklet Nearly Done

My new booklet called, "On Life and Living with Chronic Illness" is nearly done. The graphic artist has it for final touches--a few color changes and some MORE mispullings to correct. The book is designed to work as a great tool by itself--it includes a free poster with the ten questions everyone living with chronic illness must answer--but it works even better with a bead wreath. The "wreath" has different colored beads for each question. The beads size, shape and color act of each bead acts as a reminder for the different questions (and the need to find answers to them). But I'm learning it can be a huge pain to FIND nice beads. You can help me out by answering this question: Do you think you might get just as much use or value from a reminder system if the "beads" were actually BUTTONS?

I can go to Wal Mart or any sewing store and find tons of interesting buttons. Finding beads, even wheN I'm willing to buy in bulk, can be trickier. So, let me know what you think using the comment link below. I appreciate your feedback.

Rodney Robbins booklet "On Live and Living with Chronic Illness"

I'm working on a new booklet called "On Life and Living with Chronic Illness." This booklet will provide more than 100 tips I've learned from dealing with the three medical problems I confront every day. The first section is on Diagnosis, the sample below is the one on Treatment, and the next section will be on Mourning. When I'm finished, I'll offer this booklet for sale here. I'll also allow theaters that do my plays to sell the booklet. Read about my first booklet here. So, here is a little piece to get you started.

Section Two: TREATMENT

Ask yourself, "Am I getting treatment that works?"

11. Be willing to take make changes. Your life is not the life you planned—it is the life you have. When you accept that change is inevitable, your treatment will go much smoother.

12. Treatment that works is like money in the bank. Emotionally, a diagnosis is wonderful, but finding treatment that works is when you start to actually feel better.

13. Take the right drugs. We are as different on the inside as we are on the outside. The newest wonderful drug might be perfect for you, or you might do better with an old stand by. Find what works and stick with it.

14. Take the right dose. Some of the drugs I take are powerful and loaded with side effects, but the problems can be reduced by slowly ramping up to the therapeutic dose. Don’t quite your medicine till you’ve talked to your doctor about adjusting the dosage.

15. Take your drugs on the right schedule. Some drugs are better with food. Others can be taken at night so you don’t notice the side effects. Once a day dosing is convenient, but only if it works.

16. Sometimes generic drugs don’t work. You should absolutely use generics when you can, but generics don’t always work. One of the drugs I need has a virtually free generic version that just doesn’t work for me. I can’t complain too much because the name brand works great!

17. Use a reminder system. I had a waiter once who had a system for clearing tables and bringing food. He was the best waiters I’ve ever had. Exercising in the morning, taking your meds with meals, using an electronic reminder or a patient checklist are systems you might use to improve your treatment.

18. Sometimes, treatment is things you don’t do. Diabetics shouldn’t pig out on pie. Marathons are out for people with muscular dystrophy. You need to know what makes you worse and stop doing it. I hate giving things up—it makes me feel worthless—but I’ll do it so I can keep working and enjoy my family.

19. Treatment is things you do every day. Lifestyle adjustment is also the good things you do to feel better: healthy food, plenty of rest, fresh air, dancing, spiritual practice and more. These are things to celebrate and enjoy.

20. It’s okay to get psychological treatment. Medical doctors should not dabble in psychology, but it is a fact that many people who live with chronic illness also live with depression, sadness, grief, anger and feelings of betrayal. It’s okay to talk about those issues with someone you trust.

21. Lifestyle may be your number one treatment. Even the most powerful drugs and treatments can be easily undone by a crappy lifestyle. I hate to break the news to you, but you can’t afford the luxury of treating yourself like crap.

The next section in "On Life and Living with Chronic Illness" booklet will be about mourning. We're not dieing, but our old life is lost. When the life you expected is dead to you, it is very much like loosing your closest friend.

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The Behinder I Get the Faster I Go

I haven't written much on the chronic illness book for the last few days. Instead I've been reading a wonderful book by an American Buddhist nun named Pema Chodron. She's the resident teacher at a Tibetan Buddhist monastery in Nova, Scotia. The book is called "The Wisdom of No Escape." What does this book have to do with living with chronic illness? Aren't we all trapped by our illnesses? Even if we could be  magically cured today, I suspect we would all still have our fair share of personal problems, phobias, meltdowns and panic attacks. We'd still be trapped in ordinary life.

The subtitle of Chodron's book is: "And the Path of Loving-Kindness." I really appreciate that. In the Christian faith, they tell the story of a group of bible scholars came to Jesus and asked, "What is God's greatest commandment?" Of course, Jesus knew this was a trap, since no matter what he said, the legalists would argue he was slighting God by not choosing some other commandment. So Jesus said, "All God's commandments are good, but I give you a new one: Love one another." I believe if we could all start there, the world would be a better place. I can't follow 2,500 years of Buddhist commentary, but I can understand loving kindness. I can't follow 2,500 rules from the Christian Bible, but I can show love to the people around me.

How about you? How can you learn to love and take care of yourself? How does your spouse, or your child want you to show love to them? Is there someone at work who needs a little bit of simple human kindness? I have days when I just want to bite people's heads off and spit them into the ocean, but most of the time, I can find a little energy to show love, compassion and kindness to SOMEone every day. Try it yourself, and share your story with the comment link below. To read Chodron's book, click the book icon below.