Welcome to the June Update from Breathing Better Living Well!
Something To Hope For
You might be wondering if you missed the May update. You didn't. May flew by before I knew it. And here we are already. This month I'm honored to share with you a very special newsletter. It's from my heart, and it's about loss... and hope.
We're going to start with some words from a wise lady, Jo-Von Tucker, who was given some really bad news (basically, a death sentence) with no choice but to find her own hope. Later on in this newsletter we're going to hear some wisdom from a man, a dear friend of BBLW and a personal friend of mine, who passed away last week. He, too, had to look for hope in what seemed like a hopeless situation. If you're just half as inspired by hearing their stories as I have been by knowing the people who shared them, I know you'll have a brighter day - today and for many tomorrows to come.
"Being diagnosed with COPD or another chronic lung disease can be devastating. You learn that you have a progressive, incurable disease that may drastically limit your physical abilities. Most doctors – even pulmonologists – do not have the time to educate patients. But by far, the worst thing left out of diagnosis – is Hope. We are rarely advised that we have even the right to have hope with COPD. Even if a doctor suspects that his or her patient may have a poor prognosis, that person is still entitled to hope. That should never be taken away.
"No one should be without hope, ever! It’s a ladder to hold onto. It's a reason to get up in the mornings. It gives us reason to smile. It lets us reach out to help other people. It helps us sleep at night. But most of all, hope provides us with inspiration, encouragement, and the strength to face each day."
Written by Jo-Von Tucker, who was diagnosed with COPD at age 52 and told she had two to five years to live. (She went on to live over 14 years and died from something other than her lung disease.)
More on this later, but for now, let's see what's new at BBLW...
COPD Summer Activity: Raising Monarch Butterflies
Jane's Articles on Health Central
Raising Monarch butterflies is a favorite activity of people with chronic lung disease. In this article I show you how raising Monarchs is easy, fun and rewarding - and I'll give you energy saving tips for doing it with breath to spare.
Honoring Loved Ones with Monarch Butterflies
It's sad to lose a friend or a loved one. Learn about a treasured tradition - how a Monarch butterfly can offer a glimmer of hope, even when your heart is breaking.
Mom Can’t Breathe
Being a mom is hard enough, but how can you cope with COPD on top of it? Learn from four moms of different ages and stages how they do it.
When There Isn’t Any “More” to Do
"There must be something more they can do to help my breathing! Is this as good as I’m ever going to get?” Discover "The More."
Keeping a Medical Notebook for COPD
What's a medical notebook, should you have one...and why? (This has been a popular article with our readers.)
Gardening with COPD
I can hardly breathe! Will I ever be able to work in the garden again?
...So, I was working on this newsletter. The phone rang. It was my mom - my same mom who 31 years ago met me at the top of the stairs as I came home at the end of the day. That day her face was pale. Her expression was blank. She didn't hesitate and told me that my friend Steve, 19-years old at the time, had been in a terrible accident on the farm, he was in critical condition, and that if he lived, he would, for the rest of his life be paralyzed from the neck down.
For me, life went on. I got married and moved to Michigan. Steve and I lost touch but we reconnected over the last several years through email and personal visits. We became close friends. He joined our BBLW staff, posting inspiring quotes and nature pictures on our "Thought for Your Day" forum. I adored him. We all adored him. He made us better people.
So when the phone rang last week, again, Mom's voice was pale. And without hesitation she told me that Steve had died. I knew he'd been ill lately. I knew he wouldn't live forever - none of us do. But the finality of it broke our hearts.
A few years ago I was writing about hope and I needed help. Who better to ask, than Steve, who in spite of his circumstance, lived with peace, joy, a sharp sense of humor, and a twinkle in his eye. He wrote a piece, Steve's Thoughts on Hope. I was honored to read it last week at his memorial service.
Here's an excerpt: "My first thoughts were to pretty much give up because, what was the point? My life was over. My plans were over. My dreams were gone. What good would, or could I be ever again?...."
A Way to Help - A Way to Give Hope
If you're a health care professional you probably receive medical journals - maybe lots of them. But once you're finished reading them, if you're anything like me, you put them aside. But that doesn't have to be the end of them! Your medical journals can help rebuild the medical knowledge of a war-torn country. Here's how you can help. Your Used Medical Journals Can Help Mend Iraq’s Healthcare System.
Questions about Oxygen?
How about those new Portable Oxygen Concentrators (POC's)? What are they all about? Find out in a great new article about POC's in the Pulmonary Paper.
Want to go on a cruise? Get Up and GO2! Cruising with lung disease and supplemental O2
The BBLW Community is the place to go. If you're feeling up or if you're feeling down, you'll find encouragement as well as answers to your lung questions, links to articles, discussions, and more. Stop in and meet our amazing Moderating Team and our Respiratory Therapists!
The Social Security and Disability Resource Center website provides a detailed overview of how the federal disability system works (social security disability and SSI). Based on the personal experience of a former disability-medicaid caseworker and disability examiner, this site provides answers to common questions with answers that are often hard to find.
We're always growing! Visit us on Facebook!
See pictures from the Sea Puffers cruise to the Panama Canal, and check in for updates on articles, events and posts from our members.
Finally.... in the BBLW Bookstore!
Live Your Life With COPD - 52 Weeks of Health, Happiness and Hope, Based on the editorials of Jo-Von Tucker and the teachings of Jane Martin, you'll find something new each week to help you live a better life with COPD. I'd love to send you a copy, signed from me to you. Just email me and I'll tell you how.
And if you're hoping for something totally not serious...escape to a new feature in our BBLW Bookstore - Jane's Bookshelf - where you can see what I've been reading. Tell me about your favorite books, too!
That's about all for now. You may get discouraged sometimes, but dear friends... whatever you do... don't lose Hope! This month try to find something, just something, to hope for - not necessarily a cure for your lungs or to turn the clock back on your disease. Hope can be found. It's there. You just have to learn to look for it.
As for me...I’m hoping that this summer I will find a least one healthy Monarch egg – to take it in, protect it, feed it, care for it and witness its birth. And then when it is time for it to fly, ...I’ll name it Steve.
Take care, dear friends. Breathe well, and I'll see you next month!
"It has never been, and never will be, easy work! But the road that is built in hope
is more pleasant to the traveler than the road built in despair, even though they both lead
to the same destination.”
~~ Marie Zimmer Bradley