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.

Popularity: 7% [?]

Healing Words

Deanna Nichols

“The words of the reckless pierce like swords, but the tongue of the wise brings healing.” -Proverbs 12:18

Yesterday I had a great conversation with a health and fitness coach with whom I recently started working. Not only did she give me some great ideas to work toward my personal goals, but I also found myself leaving the conversation with a lot more hope than I’ve felt in a long time. It’s interesting I should be so hopeful because I’m really having a tough time physically right now. And we also spent a fair amount of time discussing my past history of chronic illness, a topic that usually drains me and makes me sad.

Instead, she was able to focus on the accomplishments I’ve made in the past two years toward a healthier me.

I later realized my coach did a simple yet powerful thing: she used her words to bring healing–healing to my spirit and even to my body. After we spoke I was more inspired to remain on the path of a healthy lifestyle, and I was so energized by hope that I went ahead and started my new exercise program that I’ve been putting off for months because I didn’t feel well enough to try. Which, in turn, inspired me to eat healthy and work out again today. And maybe I’m imagining things, but my current flaring health symptoms seem to be better too.

Recently I’ve had a lot of reckless words spoken into my life and my health situation. Well-meaning family members, friends, and doctors have said things that to some degree, robbed me of hope, faith, and joy. It’s been a fierce battle in my heart to fight off the constant barrage of negativity their words created. What a contrast with my experience yesterday!

This is a great lesson for all of us. Before we share that “helpful” idea or something “the Lord laid on our heart” that our loved one “needs” to hear, let’s ask ourselves if we are planting seeds of hope and healing or if we are truly piercing them with the sword of our reckless words.

“Set a guard over my mouth, O Lord; keep watch over the door of my lips.” (Psalm 141:3)

About the Author: Deanna Nichols is a woman of faith searching for purpose in the midst of a lifetime of physical illness and pain. She has been diagnosed with narcolepsy with cataplexy, polycystic ovarian disease, Hashimoto’s thyroid disease, and many others. Her chronic illnesses make it impossible for her to work or even drive, so she is mostly home-bound. She is on the Board of Directors for her family’s commercial lawn maintenance business, is an avid reader and book reviewer, and uses social networking to encourage people with chronic illness, educate those without illness, as well as to share what she’s learned regarding natural health. She lives in Northeast Florida with her husband of 12 years and their 5 furry children. Read Deanna’s blog A Fragile Faith.

Popularity: 5% [?]

5 Ways to Cope in a Crisis When Living With a Chronic Illness

Diana Lee

Taking a little time to come with ideas for how to handle a crisis is a valuable exercise for anyone living with a chronic, invisible illness. After all, to live with a chronic illness is to know that a crisis will come your way at some point. This list comprises the things I’ve learned about how to cope when life throws you a curve ball. As I’ve matured and had to learn how to deal with changes brought about by chronic illness, it has become easier and easier to cope with things I never thought I could handle.

(1) Breathe

By focusing on breathing I can keep myself in the moment and stop my brain from running wild with all the “what ifs.” It’s always the best place to start when something goes wrong.

 

(2) Focus on being rational and maintaining perspective

It’s in my nature to start flipping out during a crisis. It takes a concerted effort to keep myself thinking rationally. I do my best to keep reminding myself that I can handle whatever has been thrown my way and that freaking out does nothing but make me upset. The older I get the easier I find it to do this. I used to completely lose it and go into hysterical crying with any crisis. I still do that sometimes, but much less often.

(3) Lean on family and friends

In addition to my husband, parents, and closest friends, I’m part of a fantastic, close knit message board of women who provide the most amazing support both day-to-day and in a crisis. It’s like our own little Internet family. I don’t know what I would do without them. The online migraine and chronic illness community is an incredible source of support, too.

Discussing your situation with people who truly understand because they are living the same thing is amazing. Turning to other people also often helps me discover options and solutions I would never have thought of on my own.

 

(4) Ask for help

This is hard for me. I don’t like to need to ask for help. I want to be independent. But when push comes to shove sometimes it would be downright stupid to suffer silently when someone who loves you could do something to make things easier for you. Not everyone is lucky enough to have a supportive family or group of friends. Since I do, I should let them help me. They want to.

(5) Be kind to myself

I have a scary tendency to chastise myself for any part I think I might have had in bringing about a crisis. For instance, if I’d only tried harder I wouldn’t have lost my job. Never mind that I was dealing with three years of constant migraines when I quit working. It’s much easier to deal with a crisis if I can have compassion toward myself and remember that most crises are just a fluke rather than something I deserve for being a bad person.

In conclusion. . .

Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.

About the Author: Diana Lee lives with chronic migraine disease, occipital neuralgia, diabetes, polycystic ovary syndrome and depression. She blogs about living with chronic pain, migraines and depression at her site, Somebody Heal Me, and interacts with other patients on Twitter, Facebook and Google+.

She is a licensed attorney, but is currently on disability because of the frequency and intensity of her chronic intractable migraines. She is married and mommy to two furbabies, Felix the cat and Maisy the Jack Russell Terrier. She loves reading, mindfulness meditation, watching college football and basketball, reality TV, laughing and being an advocate for other patients.

Popularity: 9% [?]

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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“30 Things About My Chronic Illness ” Meme

Last year hundreds of people participated in our “30 Things” Meme. We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).

This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?

Fill this out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.

Be sure to comment below with the name of your blog and where it’s posted so we can come read it!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Are you blogging for Invisible Illness Week? Be sure to sign up and let us know at Bloggers Unite!

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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

Popularity: 9% [?]

Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?

I am thrilled to announce that I recently had this blog post, “Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?” ran over at the Huffington Post. Please be sure to visit and leave a comment to help us increase awareness of invisible illness issues.

Lisa Copen
Invisible Illness Week Founder

Related articles

• NOT WELL: Salahi reveals MS diagnosis (politico.com)
• Lisa Copen: Does “Housewife” Michaele Salahi’s Confession of MS Help or Hinder Illness Awareness Issues? (huffingtonpost.com)
• Michaele Salahi Has Multiple Sclerosis (thehollywoodgossip.com)

Popularity: 9% [?]

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.

Related articles

• Rest Ministries Sponsors Invisible Illness Week (chronicillnesspaindevotionals.wordpress.com)
• Living With Invisible Illness: 5 Ways To Get Over Aggravations (invisibleillnessweek.com)

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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.

Related articles

• National Invisible Illness Week Features Virtual Conference This Week (invisibleillnessweek.com)
• Press Release – Invisible Illness Week Bloggers Driving Force Behind Awareness Campaign (invisibleillnessweek.com)

Popularity: 4% [?]

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% [?]

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