Thursday’s Workshop 2 Parts [1] Invisible Disabilites [2] The Joy of Friendships

Wayne and Sherri Connell shared from their hearts about marriage when chronic illness is a part of life as well as information about their role as invisible disability advocates.

Then Lisa interviewed Jenni Prokopy, Christine Miserandino and Kerri Sparling, who are all well-known in the illness community due to their blogs, and they shared in a lively discussion about the friendship aspects of chronic illness.

All of them still take it one day at a time when it comes to learning their limitations and what they can do. Christine calls her time after an event that takes a lot of energy “preparing for a crash landing.” They discussed how important it is to have friends “in person” and stay connected, as well as friends online and how helpful they can be in our journey of coping with illness.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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Wednesday’s Workshop Covers Organizing Tips & Parenting When Ill

Wednesday’s program covered 2 topics: “Getting Organized” and “Parenting with Illness.”

Lisa started the show with a bit of a technical glitch but she quickly was able to get her guests through. (And Lisa was dressed today!) Karen Whiting and Marcia Ramsland spoke on organizing and time management. Karen shared one of her best parenting tips, which was to have each child assigned a color and they have everything that is theirs that color, such as a towel, toothbrush, school folders, etc. She said they never passed around the flu in her home, because there was no spread of germs this way. She also shared how helpful it can be to know your “natural energy cycle.” Know what time of day you have more energy of know the seasons that are more difficult for you to get that “spring cleaning” done (it may not be in the Spring at all!)

Marcia Ramsland shared about how the little things can make a huge impact in getting organized, like just doing a “2-minute pickup” when you leave a room or cleaning up a small drawer during the commercials on TV.

Marcia and Karen both have many articles and tips on their web sites, and Marcia also has a free download of a “Time Tracker.”

Next Jill Hart joined Lisa to talk about parenting. Lisa and Jill shared a little about how hard it can be to find the right balance between raising a compassionate kid as well as not wanting them to be the “parent” to an ill parent. Christine Miserandino and Kelly Young joined a few minutes late but Christine shared how the reason was because she’d literally just gotten home from the pediatrician with her daughter who is 3. She spoke about how important it is to have a emergency plan in place for when things like your child becoming ill happens.

Kelly shared about how a child is not like a cake mix (listen to learn more!) and then the women shared a little bit about how they are a mom, someone with an illness, AND a patient advocate online (when do they write and how do they do it all?)

One caller explained how the session had been encouraging as she and her spouse were considering if they should have a child or not. Lisa encouraged her to make the decision from the heart along with her spouse and not to give outside influences too much weight in the choice.

They closed the program with Lisa saying she’d love to have them all back sometime soon for a more in depth time, as they all are an amazing group of women with lots to share.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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Conf Workshops

ABOUT THE WEEK

• Programs will occur M-F, September 13-17, 10:30 – 12 PACIFIC time; 12:30-2 PM CENTRAL TIME; 1:30 PM – 3 PM EASTERN TIME – Find a time converter here if you do not live in the USA.
• You listen to them live on your computer or can listen later. They will automatically go to itunes too if you wish to download them your ipod of MP3 player.
• To listen, click here InvisibleIllnessConference.com and turn up your speakers. If it is the right time, the program will start playing immediately.

YOUR HOST

Lisa Copen is the founder of Rest Ministries, the largest Christian organization that specifically serves the chronically ill. She has authored nine books, including resources for over 300 HopeKeepers groups, a small group program of Rest Ministries. Through various sources including National Invisible Chronic Illness Awareness Week, which she started in 2002, she seeks to encourage churches to increase an outreach to the chronically ill nearly 1 in 2 people in the U.S. Lisa’s works have been published in a variety of periodicals and books and she has been a guest of radio programs Decision Today, Family Life and Joni and Friends. She is a sought-after speaker who brings joy and humor, as well as hope, to those who are suffering or live with chronic illness.

Lisa resides in San Diego with her husband and 7-year-old son, and has lived with degenerative rheumatoid arthritis and fibromyalgia since 1993. She will be hosting the programs for Invisible Illness Week out of her home office.

MONDAY – SEPTEMBER 13, 2010

LIVING WITH INVISIBLE ILLNESS, WHY IT HURTS, HOW TO COPE

Georgia Shaffer is a licensed psychologist in Pennsylvania and a certified life coach. For over 15 years, she has enhanced people’s lives by teaching how to identify: “What needs to grow? What needs to go?” She is also is on the teaching staff of the Christian Leaders, Authors & Speakers Seminar (CLASS) and Personality Plus. She has great insight into why we do what we do, which she has shared in her books and will be sharing with us!

Author and speaker Maureen Pratt lives with multiple illnesses, including organ-involved lupus, cardiovascular disease, osteoarthritis, hypothyroidism, and chronic back pain. Through her books, including “Peace in the Storm: Meditations on Chronic Pain & Illness,” articles, and talks, she encourages others to deepen their faith and Christian walk in spite of and with living with chronic illness.

Mary Yerkes is a professional life coach who specializes in working with the chronically ill. Diagnosed with rheumatoid arthritis and other autoimmune diseases in 1997, Mary combines years of practical experience with her professional training to help the chronically ill build meaningful and significant lives, of which illness is only a part. She is also an author and speaker. To learn more about Coach Mary and the services she offers, visit www.newlifechristiancoaching.com .

TUESDAY – SEPTEMBER 14, 2010

RELATIONSHIPS

Allison Bottke is the woman behind God Allows U-Turns and now Setting Boundaries. Do you have an adult child who is breaking your heart? An aging parent taking up your whole life? A problem with food? Allison’s resources can help you discover SANITY and take back your life. Between books and support groups around the country, Allison is one who has “been there” and knows it’s hard to set boundaries, but necessary for your own sanity!

Pam Farrel is a relationship specialist, international speaker, and author of over 30 books including best-selling Men are like Waffles, Women are like Spaghetti which she wrote with her husband, Bill. Bill and Pam are frequent guests on radio and television including Focus on the Family, where their interviews with Dr. Dobson were ranked Top 10.  She is the founder and President of Seasoned Sisters, a ministry to women 40-65.

Cheryl Ricker is the author of the new book, Friend in the Storm, which is a collection of poems she wrote to a friend who was coping with cancer. She shares about her childhood, “I thought everybody was staring at me through big critical eyes. My self-consciousness affected my confidence which affected my relationships. Insecurity was my gift that kept on giving. So what did I do? I wrote poetry to process the pain of childhood rejection. It was as if some part of my restless brain knew the power of poetry to reach the broken places.”

WEDNESDAY – SEPTEMBER 15, 2010

GETTING ORGANIZED AND TIME MANAGEMENT

Karen Whiting, a freelance writer and author of ten Secrets of Success for Women: Time. Her more than 400 articles and devotions have been published in over four-dozen magazines including Brio magazine, Focus on the Family, Today’s Christian Women, Reminisce, and Devo-Zine.

Marcia Ramsland, entertaining media guest expert, speaker, and professional organizer, is well known as “The Organizing Pro” for her practical tips and clever solutions in homes and offices. She appears non national radio and TV, and her tips in national magazines like Better Homes and Gardens, Woman’s Day, and Real Simple magazines. Marcia is the author of the popular “Simplify for Success” book series, Simplify Your Life, Simplify Your Time, Simplify Your Space, Simplify Your Holidays Ages and Stages of Getting Children Organized and booklet. Marcia has a daughter that got Fibromyalgia at age 17 and knows well what it’s like to have an invisible illness in the home.

PARENTING

Jill Hart is the founder of Christian Work at Home Moms and the author of co-author of So You Want To Be a Work-At-Home Mom. She graduated from Grace University with a Bachelor’s Degree in Human Development/Family Studies and Bible. Jill has worked from home since 2000 and started her own home-based business to assist other Christians who desire to work from home while maintaining a godly life. Jill and her husband, Allen of CWAHD.com (Christian Work at Home Dads) reside in Nebraska with their two children. Jill also lives with a chronic illness.

Kelly Young is the mother five of children, two of whom are severely hearing impaired. She has homeschooled for 17 years, led parenting classes, taught many Bible studies and Adult Sunday School classes, and mentored others. Kelly has lived with autoimmune diseases most of her life and has several diagnoses, including RA. She is author of the website Rheumatoid Arthritis Warrior and the moderator of an uplifting Facebook group with about 5,300 members. Kelly encourages others to fight their disease and trust God for help and hope. Kelly lives on Florida’s Space Coast and is an avid fan of Church liturgy, NASA, and NFL football.
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Christine Miserandino is a writer, speaker, patient advocate, wife and mother living in Massapequa Park, NY. Christine is the founder of www.butyoudontlooksick.com, a website that provides resources and useful tips for living life to the fullest with a chronic illness. Her writing which has won various awards has been featured in numerous newspapers, magazines, medical newsletters and television media. She has been living with lupus for over 15 years, and has been volunteering for the Lupus Alliance, Long Island/ Queens Affiliate for 12 years.

THURSDAY – SEPTEMBER 16, 2010

EXPLAINING INVISIBLE ILLNESSES

Wayne Connell is the president of the Invisible Disabilities Association which he founded with his wife Sherri. Wayne’s desire to help others who struggle with disabilities has become a passion for him. He obtained a BA in Television and radio broadcasting in 1990. We will be talking with him about invisible illnesses and also the role he fills as husband and caregiver.

GIRL TALK – HOW CONNECTING WITH OTHERS HELPS US ALL

Jenni Prokopy is founder and editrix of ChronicBabe.com , an online resource for young women with chronic illness. An award-winning writer, speaker, and expert on healthy living, she shares her personal experience – and rallies the expertise of hundreds of others – to help women live beyond their illness and be total Babes.
Her writing has appeared in numerous publications, and she has worked with dozens of organizations large and small, local and multinational, to create compelling messages that empower people to work better, play harder. . .and be their best.

Kerri Sparling is the founder of 6 Until Me, one of the largest patient blogs for those with diabetes. She is married to a “frantically funny, sharp-witted, and brilliant man who is both handsome and caring.” And  on April 15th, 2010, her daughter joined the Sparling family. She is also a freelance writer and patient advocate.
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Christine Miserandino is a writer, speaker, patient advocate, wife and mother living in Massapequa Park, NY. Christine is the founder of www.butyoudontlooksick.com, a website that provides resources and useful tips for living life to the fullest with a chronic illness. Her writing which has won various awards has been featured in numerous newspapers, magazines, medical newsletters and television media. She has been living with lupus for over 15 years.

FRIDAY – SEPTEMBER 17, 2010

CAREER, WORKING, STARTING OWN BIZ

Rosalind Joffe built on her own experience of living with chronic illnesses for 30 years, including multiple sclerosis and ulcerative colitis, when she founded cicoach.com. This career coaching firm is dedicated to helping professionals with chronic illness develop the skills they need to succeed in their careers. Rosalind Joffe is a recognized national expert on chronic illness and its impact on career. She is the co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!

Jennie Krogulski is the founder of Hilton Head Nannies. Despite living with a chronic illness, she has started a successful business and will share some of her best tips.
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Trish Robichaud is a Maximum Life & Healthy Business Coach who lives with multiple sclerosis & major depression.  She teaches women living with chronic illness or disability how to honour and accommodate their health while striving to achieving work/life balance and entrepreneurial success through her “Business Beyond Chronic Illness” coaching program.  Download her free Optimal Health Kit at ChangingPaces.com.

ChangingPaces.com.

IN CLOSING

LISA AND TWILA FOR THE LAST HALF HOUR – CALL WITH YOUR COMMENTS!

Twila Belk is the “Gotta Tell Somebody Gal” and her family has experienced its share of invisible illnesses. Her energetic, passionate joy in life is sure to encourage you as we sign off for the week.

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You are Too Young to Be That Sick! Chronic Illness & Young Adults

by Lisa Copen

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.

Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.

With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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