Featured Workshops Today: Working and Chronic Illness

If you are one of the millions of people who live with a chronic illness and yet you still get up and go to work every morning, you may find there is a lack of resources for your particular situation. Although you may feel as though you do not necessarily fit in with the career-oriented people who are healthy and not suffering from challenges on a daily basis, you may also feel that you do not specifically relate to those who are home a great deal of time and not able to physically work.

We have found some wonderful resources for you and you will discover that having chronic illness does not prevent you from also having an exceptional career. Although the career you have originally chosen may no longer be possible due to your situation and physical limitations, that does not mean that there are not thousands of career options that you may still choose from, a few which are likely to feel passionate about.

In fact, you may find that having a chronic condition may help you narrow in on your passions and what you enjoy the most, and thereby, make your career choice, an intentional one which can serve you in years to come.

Join us for a couple of workshops where we speak about careers and chronic illness and working well when chronically ill.

Are you interested in “Finding the Job You Desire and Can Do? Rosalind Joffe will be you through the process of looking at what your abilities are (and yes, your inabilities now) and how to go about choosing a wise career path that can work well with the and picked ability of your chronic illness, as well as those leadership skills you have mastered due to managing your illness effectively.

You will also hear from some people who have started their own business, such as Jennie Krogulski who is the founder of Hilton Head Nannies and works each day to best accommodate her career path as well as the daily difficulties with her chronic condition. 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. And Trish Robichaud is a Maximum Life & Healthy Relationship Coach who lives with multiple sclerosis & major depression. See Illness, Work, Career, and Starting Your Own Business

You also have the opportunity to hear from Lisa about starting Rest Ministries, the founder of Invisible Illness Week. She shares how she has Managed Chronic Illness and a Nonprofit Organization.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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Featured Workshops Today: Searching For Self Understanding

Do you ever feel a bit emotionally stuck? Whether you have the blues or have gone through some major depression, some our favorite marriage and family therapists join us with their seminars, as well as some illness advocates. All of these women Lisa is honored to call friend.

Here are some of their workshops we know you will enjoy and hopefully get something wonderful and helpful out of!

“Living with Chronic Illness: Why It Hurts, How to Cope” Georgia Shaffer, Maureen Pratt, and Mary Yerkes join us in an interview style 1-hour conversation. There are some powerful tools that can start helping you today!

A bit about these women:

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?”

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,” 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.

More programs you will love!

In the program, “Understanding How we Uniquely Deal with Difficulties in Life,” Georgia Shaffer explains how we handle the stress of illness in our lives is very unique to us. Our personality, faith, coping skills and more all come together and one person’s way is not better or worse than anothers.

Leslie Vernick shares with us something we all encounter at one time or another: “Dealing with Hurt Feeling and Mixed Up Relationships.” Leslie Vernick is a Christian counselor who doing most of her work with relationship problems. She focuses on improving relationships with others, God and self, teaching people how to address conflict, speak the truth in love, handle adversity in a God-centered way and negotiate through difficult and destructive relationships with biblical principles.

Regardless of your faith, Leslie will give some practical tools and tips to help you with the people in your life. When things go wrong in relationships, is someone at fault? Do you feel like you would have responded differently if your illness didn’t get in the way? Leslie will explain how to respond when things don’t turn out the way we’d hoped.

If you feel like there are times when you are messing up your own life, you’ll want to listen to Jenny Prokopy’s presentation, “Overcoming Self-Defeating Behaviors” Jenni is the founder of the popular chronicbabe.com

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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About This Week’s Workshops

Monday is officially the first day of National Invisible Chronic Illness Awareness Week. In past years we have featured a 5-day virtual conference with special guests who help us learn to live better lives even though we also deal with the day to day struggles of an unpredictable chronic illness.

This year we will be featuring some of these exceptional workshops. Each day we will provide links to 3 or 4 podcasts we think you would enjoy. We hope that you find the information valuable and helpful and please feel fre to share it with a friend,on your favorite social network, or even in your own blog (you can actually get the embed code at blogtalkradio.com)

You can find them all podcasts here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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PRODUCT REVIEW: Skeptical People In Charge? Wear a Bracelet!

Each Thursday we’re going to do a product review of one of our
awareness items!

This week our featured products are “easy things to wear when you need to ‘prove’ you have a chronic illness.”

Just this summer I asked to take a short cut through the county fair entrance line and then wait for my family to walk the maze before entering. The man guarding the gate beside the big blue handicapped sign, however, looked at me skeptically.

All I said was, “I have rheumatoid arthritis and would like to save myself a few steps. Could I wait for my family here?” He looked at me for proof of my illness. “Do you have a handicapped placard?” he asked, as if my husband would pull it out of his pocket.

My husband said, “Well, we do… but we parked in the disabled section… so it’s in the car.” The man really didn’t want to let me in, but finally relented. And as he did I thought, “I’d wish I’d worn my silicone bracelet!”

2 items we love that may save you a bit of heartache (and a few steps too) are the National Invisible Chronic Illness Awareness Week White Silicone Bracelets and the “dog tag” necklace.

The next time you’re going somewhere where you think you may just need to use the elevator (and everyone says, “This is for wheelchairs and strollers only,” just smile and say, “Yes, I know. I have an invisible illness and feel more comfortable taking the elevator, thanks.”

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Invisible Illness Week Now Accepting Articles For This Site

We have now opened up over submission page for articles and blogs to be featured on this website in the coming two months. I am looking forward to hearing your feedback on what it is like to live with a chronic condition that is invisible.

To submit your complete article, bio, and photo, click on the link above that says “Submit Article.”

Here are some of the topics we are looking for and your post should be trained 300 and 750 words.

• Our theme this year is “Deep Breath, Start Fresh” – what does this to you and how you live chronic illness?

What has your experience been in coping with…

• Physical needs that are not apparent to others because you look well
• Expectations from those around you, from your spouse to your boss, because you look well
• How your children perceive your chronic condition
• How you choose to reveal or not reveal the seriousness of your illness
• How you deal with your illness on a daily basis. When it is invisible is easier to deny the seriousness of it?
• The looks. . . when you park in a handicapped spot legally to when you explain your unable to walk very far
• Still finding joy in life despite some limitations
• How physicians and other medical care professionals don’t even understand that your pain is quite invisible
• How do have sought to bring awareness about invisible illness as in healthcare advocate
• How you have tried to explain to your loved ones about having invisible illnesses or a hidden disability
• and the list goes on!

We are eager to hear from you about the emotions of living with a chronic condition, how you have found yourself dealing with difficult circumstances, how you overcome the need to stay in bed and hide from the world are most difficult days, what ever is on your mind!

Before you submit your article you should have a third person biographies ready to go that is less than 150 words and contained only one week. If you submit more than this it will be edited and you may not be pleased with which part we keep. Please do not submit a link to your article on your website but rather the actual article, which you will copy and paste into our form. If it does not have the article in the form, it will be deleted.

And if you are talking about your illness or Invisible Illness Week we hope you will join our Bloggers Unite group so that other people can be sure to visit your website and read your postings.

Thank you so much,
Lisa Copen

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Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved!

These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do.

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Listen to Invisible Illness Week Workshops Any Time for Encouragement

Did you happen to make some of our podcast seminars during National Invisible Chronic Illness Awareness Week? We had some amazing guests as our panelists who contributed to a successful week of inspiration, information, and education.

One of my favorite emails from of listener that I just received this weekend says:

“I listened to the broadcast on Monday. I cried through the whole thing. I listened to it a few more times because I missed too much (crying). I felt so validated for the first time in 5 years. It doesn’t matter that my disease is a 1 in 200,000 what was discussed was common to all. I have no idea the hours of labor you put into the week or the finances or the physical cost to your body that such an undertaking had but I know it had to be great. I just want you to know that your labors made a difference. . . Just learning that what I feel is common to all who suffer with chronic illness made me realize that though I sometimes feel like I am isolated God is right there with me every step.”

Wow. Tears came to my eyes as I read her entire email (this is just a portion above) and then I printed it out and read it to my husband.

To all of you who helped me make this week possible, thank you.

Now. . . head on over to Invisible Illness Week podcasts at Blog Talk Radio to get some more encouragement. You may even find an episoide from 2008 or 2009 that strikes a chord with you too! You can also find our Invisible Illness Week programs in the Apple itunes store for free if you want to download them to your ipod.

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How to Decide Your Career Future When Chronically Ill

By Jennie Krogulski

Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?

What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.

I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.

However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.

While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:

• Your current field of work: Is it suitable for a work-at-home environment?
• Your relationship with your employer: Are they flexible?
• The way your home is set up: Do you have room to work from home?
• Your financial situation: Do you have funds set back to start up a small business if needed?
• Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
• Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?

Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.

I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.

God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”

Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.

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The Invisible Woman

I’m smiling.
What else can you see?
Probably nothing.
Because you can’t see past it.

I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.

What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.

I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.

So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.

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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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