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.

Popularity: 7% [?]

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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FRIDAY’S 9/17 SEMINAR: Working/Home Business & Closing Half Hour

Can you believe it’s already the end of the week? We hope you’ve been having a great time and have enjoyed the workshops. If you have missed any just a reminder that you can find them all (and the last 2 year’s worth too!) on Blog Talk Radio at http://invisibleillnessconference.com .

Today we have some great speakers to chat with us about working. This includes Rosalind Joffe a career coach for those with chronic illness, Tricia Robichaud who is a coach as well as and a wonderful home-based business; and Jenny Krogulski who has started a business at home matching nannies with families. This is an amazing group of gals we know will encourage you even if you aren’t planning to work or cannot work.

Then, Twila Belk, author herself and assistant to Cecil Murphey will join me to close up the last half hour and she has some joy that will help us end on a beautifully upbeat note.

Career/Working:
* 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! Twitter: @WorkWithIllness

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. Twitter: @HHNannies

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. Twitter: @OptmlHealthGuru

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

Popularity: 6% [?]

My Illness No Longer Controls Me

By: Carolyn Matheson, Master Certified Coach

Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.

I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.

I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.

As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.

It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.

When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.

What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.

I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.

Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: carolyn@peopleworkbest.com; twitter @capcoach; blog www.carolynsmatheson.com

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Tuesday’s Workshop Panelists Share About Relationships and Chronic Illness

Our seminar today was “Relationships When You Live with a Chronic Illness” and Cheryl Ricker and Pam Farrel joined Lisa Copen to discuss friendship and marriage as they relate to chronic illness. Unfortunately Allison Bottke had an emergency and could not make it.

Lisa opened up by confessing that she was still in her PJs and had not had time to get dressed before the program. (So if you are listening in PJs, you are in good company!)

Cheryl discussed helping a friend with chronic illness and they shared what was done for them that has helped them as they cope with chronic illness. Cheryl shared the story behind her book, Friend in a Storm, of poetry written for a friend going through cancer treatment and how the gift of words is a wonderful gift.

Pam joined Lisa halfway through the program and they discussed the marriage relationship when one person is coping with chronic illness. She explained just what the difference is between men and women and what it is that makes them tick. Lisa asked Pam about the emotions involved when a spouse tells a chronically ill person, “I miss who you used to be…” Pam also shared some other tips from her book The Marriage Code.

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.

“I loved the part on marriage and what Pam shared about how to communicate with your spouse when something slips out of your mouth that you should not have said,” shares Kelsey. “Thank you for these wonderful podcasts that I can listen to from my home!”

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How Do You Start Becoming a “Well” Ill Person?

By Sue Ingebretson

Embarking on a journey can be both frightening and exciting. When the journey is about health — your own health — you may feel that the frightening far outweighs the exciting.

If you’re someone who’s chronically ill, consider your current status:

• Are you where you want to be?
• Do you feel satisfied with your level of wellness?

Few would answer “yes” to that question. Understanding the health journey process goes a long way toward removing the “frightening factor,” and that’s where the following illustration helps.

When I describe what I call the Rebuilding Wellness concept at speaking engagements, I tell it this way. Think about fixing up a home. Maybe it appears rundown; the eves sag, the paint has peeled, and the once-green lawn has gone beige. Nothing that some operating sprinklers and a new coat of paint can’t fix.

But, if you put some thought into it before the elbow grease, a home that has visible problems might have others, too. It could have problems that aren’t visible, bigger ones beneath the warped siding. What if the roof leaks or the plumbing is bad. Even worse, what if the foundation has cracks – serious cracks. Would slapping on a coat of exterior paint suffice as the ultimate remedy then?

Our health issues are the same way. By the time symptoms appear on the surface, the problems that caused them have already run amok elsewhere. Chronic illness takes time to manifest. It stands to reason that the application of solutions will be no quick fix.

So, where to begin? Consider the type of “cracks” that are affecting your foundation: nutritional deficiencies, extreme stress, toxin exposure (internal and external), infections, injuries, and/or hormonal/thyroid dysfunction. Take a look at what you think affects you most. Begin an action plan to remedy these problems and fortify your “home.”

Tackling these “cracks” one at a time is a big job, but I promise, Rebuilding Wellness is always a worthwhile investment.

Susan Ingebretson is a writer, speaker and the director of program development for the Fibromyalgia Research and Education Center at California State University, Fullerton. Her book, FibroWHYalgia, (2010) details her own journey from illness to wellness. You can read more at her website, Rebuilding Wellness. Ingebretson’s writing has appeared in the National Fibromyalgia Association (NFA) online and print magazine, FibromyalgiaAWARE. Susan is also featured in the NFA’s Public Service Announcement, “The Science Behind Fibromyalgia.”

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Monday’s Workshop Talks About New Normal, Stages of Emotions When Coping with Illness

Georgia Shaffer, Maureen Pratt, and Mary Yerkes joined Lisa for our opening seminar for Invisible Illness Week, “Living with Chronic Illness: Why It Hurts, How to Cope.”

They shared about grieving our losses as we’re coping with chronic illness: accepting our illnesses, restructuring our life, and redefining our “new normal.”

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.

During the 90-minute show they discuss the various emotions we deal with and what to do with them. They discussed the best effective coping mechanisms and suggestions for what to do when we’re overwhelmed.

They had time for a couple of callers who asked the panelists about certain coping tips. Elizabeth W. listened and says, “It was a GREAT seminar! I learned a lot. I will likely listen to it over to get all the tips down – I can’t write with my illness and can’t remember all that well – but it touched me deeply and honestly and hit me where I live!”

We’re so glad you enjoyed it! Be sure tune in tomorrow as we talk about relationships.

Popularity: 1% [?]

MONDAY’S 9/13 SEMINAR: Why Illness Hurts, How to Cope

We kick things off at September 13 at 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time – USA time at http://invisibleillnessconference.com . Remember, if you miss it… it’s okay! It will be archived for eons!

Have you wondered why the emotional part of coping with a chronic illness can sometimes be more draining than the physical symptoms? Do you not know where to turn to get past hurt feelings or feeling like no one understands? We’e put together a 90-minute time today with three women who we believe can help you find the answers to these questions.

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! Twitter: @GeorgiaShaffer

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. Twitter: @MaureenPratt

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. Twitter: @newlifeonline

Popularity: 3% [?]

How You Can Help This Week! Things to Know

Monday, September 13, 2010 kicks off Invisible Illness Week!

There are many ways to get involved in the online activities of the week, but the most important thing to know is…

We will be having an online VIRTUAL conference. What does that mean? Each day, M-F, 10:30-12 PACIFIC you can go directly to http://invisibleillnessconference.com and you will be connected with our workshop automatically at Blog Talk Radio.

Each morning we will have a series of special guest experts who have dealt with illness in their own lives who will be able to answer questions and who will have some key talking points about topics such as coping with illness, parenting, getting organizes, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues.

Here are some other ways to get involved:

Tell someone!
Do you want to email a family member, friend, pastor, counselor, support group leader, your favorite newsletter’s editor? Here is a short description of Invisible Illness Awareness Week – copy, paste, & share anywhere! http://ow.ly/2D1eo

If you have a blog:
Do our meme: “30 Things You May Not Know About My Invisible Illness” (Found here: http://ow.ly/2D1aQ ; Or blog about any invisible illness topic) and then sign up at Bloggers Unite so everyone can find your blog post at http://ow.ly/2D13m Be sure to grab the badge that you are participating too!

Grab the button for your site:
See bottom right side column with code at http://invisibleillnessweek.com

Read about our panelists/special guests:
See someone who you want to make sure your friends know about – be sure to let them know with an email and link to this page:
http://invisibleillnessweek.com/2010/09/08/conf-workshops/

Connect with others: Join the Sunroom group for Invisible Illness Week: http://www.restministriessunroom.com/group/invisibleillness

Download our free 80-page ebook!
20 Experts share their tips about living with a chronic illness. Just sign up for the daily updates from Invisible Illness Week at http://invisibleillnessweek.com (top right side of page), confirm “subscription”, and you will get the download link.

To read blogs of others:
Bloggers who have committed to blogging about invisible illness week or II topics are registered at Bloggers Unite at http://ow.ly/2D13m – Here you can get a description of their blogs too.

Do you tweet? Here are some great things to retweet!
http://invisibleillnessweektweets.wordpress.com

Give a donation!
Have you considered giving a donation to help with Invisible Illness Week expenses?  Every little bit helps if you are financially able to give. http://ow.ly/2D1sh

Check out the photos of where people have left sticky-notes this year! http://invisibleillness.com (right column)

If you are on Facebook:
Join our “Invisible Illness Week Cause” http://ow.ly/2D1GP
Be a Fan! http://ow.ly/2D1I3
Click the “like” button on any of our web posts at http://InvisibleIllnessWeek.com
RSVP to the “event” http://ow.ly/2D1A5

* Share anything (the Cause, Event, Group, etc.) with a friend!

Post this as your status!
Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love. In recognition of Invisible Illness Awareness Week, http://InvisibleIllnessWeek.com post this as your status so someone who is suffering silently knows someone cares!

Popularity: 5% [?]

National Invisible Illness Week Features Virtual Conference This Week

SBWire-9/13/10– National Invisible Chronic Illness Awareness Week is September 12-19, 2010 and this week, Monday through Friday, the campaign features a virtual conference with one 90-minute seminar each day.

Listeners can log on to http://InvisibleIllnessConference.com to listen LIVE or later to the archived audio file. The seminars will also be available at itunes.com . To listen live, log on during September 13-17, 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time.

Topics include coping with illness, parenting, getting organized, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues. Participants include best-selling author Pam Farrel, chronic illness coach Rosaline Joffe, and popular patient advocates Christine Miserandino or butyoudontlooksick.com and Jenny Prokopy of chronicbabe.com .

Over 20 speakers from all over the country come together to provide amazing workshops that are rarely available for those with illness who are unable to travel far for a conference or sit for extended periods of time.

The host of the show is Invisible Illness Week founder, Lisa Copen, who began this week in 2002 and has produced it each year since then. Lisa is the founder of Rest Ministries which serves the chronically ill and author of many books on chronic illness, including, “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.”

Invisible Illness Week offers many other ways to get involved including blogging for the cause, sharing invisible illness week facts on Twitter or Facebook, a Facebook cause page, and leaving anonymous sticky notes in honor of the campaign’s theme, “Each One Can Reach One.”

To find out more visit the web site http://InvisibleIllnessWeek.com .

Popularity: 3% [?]

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