Seeing Beauty Through Our Pain

Kristina Schwende

I have not blogged for a while as I’m going through a very bad flareup. I have spent most of the past two weeks on the couch or in bed with an ice pack on my face. Today the sun was shining and I forced myself to go for a walk. I brought my iPhone with me as I love listening to Joyce Meyer when I’m out and about. I did my long walk very s-l-o-w-l-y. This allowed me the time to really look at the beauty around me.

I moved to British Columbia back in the ’80s because of the incredible beauty of the region. I vowed that I would never take it for granted. However, being in pain can sometimes cause my world to become so small that I don’t see the beauty around me. So today I took the time to enjoy it and captured some of the images.

When was the last time you looked for the beauty around you?

Have you let your pain block it all out?

We must remind ourselves again and again that there is more to our life than our pain. We can still find moments to enjoy. Do you enjoy photography? If you are able, look around your house or your street. Find the beauty right outside your front door. Do you enjoy music? How about taking the time to really listen to it– how each instrument blends with the other to create a beautiful melody. Are you a computer geek like me? Seek out things that you truly enjoy, maybe start your own blog!

Enjoy the people around you. Let them help you or see how you can help them and others. That’s why I started my own support group. I wanted to take take the focus off myself and turn my pain into something good.

The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you! That is why I tell people I struggle with Complex Regional Pain Syndrome. It sounds so much better then “I suffer from. . .”

Struggles can be overcome; Suffering is a choice.

Do you believe that last statement?

Do you honestly believe that suffering is a choice? Have you ever seen two people deal with similar issues but one is smiling through it all and the other one is complaining constantly? I have a dear friend who struggles with multiple sclerosis. She is the most positive person I know. She has completely accepted her condition and lives her life with pure joy–because she chooses to!

I will be the first to admit that I have problems with this concept. There are times (like in the past couple of weeks) where I find it so hard to find the joy in my life. But then my husband says something hilarious and we giggle like little kids. Or I look at the people I have met because of my journey through pain–wonderful people I would not have met otherwise.

Yes, beauty can be found through our pain, but it is a choice. I pray that you choose to find the beauty in your life today.

About the Author: Kristina Schwende was diagnosed with Complex Regional Syndrome in 2008. Since then, she has run the course of multiple painful examinations, tests and scans of every kind, and two pain management clinics. Through all this she has learned that stress plays a major part in her pain levels. She is also learning how to set healthy boundaries and pacing her activities. She founded Chronic Pain Warriors, a Christian support group, and will be starting a book study on how to set boundaries in September. Kristina is passionate about bringing chronic pain to the forefront and wants to ensure that no one suffers through their pain alone.

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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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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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Popularity: 8% [?]

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% [?]

THURSDAY’S 9/16 SEMINAR: [1] Invisible Illness [2] Girl Talk

We have an amazing group of people tomorrow morning and we hope you will join us for day #4 of Invisible Illness Week, September 15, 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 ages!

First Wayne, founder of the Invisible Disabilities Advocate will be joining us for the first half an hour to talk about the idea of living with an invisible illness or hiddenn disability. And then we’re going to be joined by some women you just may know: Christine Miserandino, otherwise known as the “Spoon” gal from butyoudontlooksick.com ; Jenny Prokpy of chronicabe.com and Kerri Sparling who is the blogger behind the diabetes blog sixuntilme.com . I hope you will tune in!

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. Twitter: @InvDisabilities

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. Twitter: @chronicbabe

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.Twitter: @sixuntilme

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. Twitter: @bydls

Popularity: 5% [?]

WEDNESDAY’S 9/15 SEMINAR: [1] Getting Organized [2] Parenting

Day #3 of Invisible Illness Week is tomorrow, so be sure to listen September 15 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 .

Here are 2 area many of us with illness struggle with – getting organized and parenting! Today’s first half of the program we will be joined by organizing and time management professionals who have both dealt with illness in their own households, so these are not empty suggestions. They may say, “make your bed” but they also know sometimes the energy is better spend doing something else (like eating).

Second half, we are excited to have Jill Hart from Christian Work at Home Moms, and “RA Warrior” who has 5 children! And Christine, the “Spoonie” Gal who is now a mom will be joining us to share her tips too.

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. Twitter: @KarenHWhiting

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. Twitter: @OrganizingPro

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. Twitter: @cwahm

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. Twitter: @RAWarrior

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. Twitter: @bydls

Popularity: 2% [?]

If Just One Person… Believes in You

In honor of all of you who have been leaving sticky notes in anonymous little places where someone can find them and be encouraged, we dedicate this song to you.

Thank you for letting someone find a note that let’s them know someone believes in them.

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TUESDAY’S 9/14 SEMINAR: Relationships, Friendships, Kids, Parents, Marriage

We’re back for day #2 of Invisible Illness Week, so join us September 14 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 .

Relationships are one of the biggest struggles we run into when trying to do our best to cope with daily chronic pain–that no one can actually see, and that we cannot “prove.” Join this amazing group of women who talk about marriage, friends, parents and how to set effective boundaries, as well as keep those relationships (especially our marriage) full of joy without getting jaded.

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! Twitter @AllisonBottke

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. Twitter: @PamFarrel

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.” Twitter: @CherylRicker

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% [?]

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