Discovering A New Normal

By Keri Delphia

With Invisible Illness Week right around the corner it has had me thinking what my life is like living with an invisible illness. For me it has been trying to say the least.

I, like so many others who I have talked to, was a perfectly healthy, full-of-energy, lots-of-stamina, wife, mother, and business woman– until one day all of that changed.

When I say “one day” it seemed as though one day I was fine the next my whole world was changed. Not only did it change my life, but it changed my whole family’s life. The wife and mother they knew who coudl– and would–do anything they needed, was now too tired, in too much pain, or mentally couldn’t remember small details that were so important to them.

Here we are six years later and I sit here trying to make this make sense with as few words as I can I can say: I have the utmost certainty that God’s Grace, Mercy and Love, has walked our family through this Journey. It has not been easy. Lot’s of doctors’ appointment, lots of disappointment in trying to find answers. And trying to learn a new normal in our lives.

I think the hardest thing for me was admitting there was something wrong with me and listening to my body; Not worrying about what people were thinking about me.

When you look normal on the outside, meaning you show no outward signs of being sick, you know that people have a hard time understanding or having sympathy to your illness. This is something that I know first hand. I was one of those people.

That I know is one of the things that God wanted me to learn through my own illness.

My family has learned a new normal. We all understand that it may have to be adjusted day by day, but communication and honesty about how I feel is a huge key it keeping a peace around our house! No matter what God is with me always and with Him I can do all things! Maybe not the way I used to, but by His grace I find a new way!

Keri Delphia is a very social person who loves to be around people. She began her career as a hairstylist in 1987 and was passionate about it until she was no longer able to do it in 2007. Now she manages a hair salon part time and enjoys sharing her knowledge with the stylists that are just starting their careers. She has been married for 16 years and has two boys 19 and 9! They are a true joy in her life! She also has 12 chickens and 1 Rooster–quite a hoot and she loves the fresh eggs. She lives with Thalamic Pain Syndrome and has been suffering for 5 years now, but it has just been recently that she was diagnosed. Visit her blog, Pain Free Journey for more writings such as this.

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Up – Visit Some Fabulous Invisible Illness Week Blogs

Many of you have been a large part of spreading the word about National Invisible Chronic Illness Awareness Week by blogging about it for us! Thank you!

And we hope that you have gained some encouragement and inspiration in reflecting on living with invisible illness as well as reading the blogs of others.

• So far this morning you can read over xx blog posts with people who have registered through Bloggers Unite. To read them click here at Bloggers Unite for Invisible Illness Week and then scroll down. Ont he right hand side it will say “Participating Blogs.” About 171 bloggers are registered from 2009 and they still have wonderful posts to read.
• Bunches of people have participated in our Meme, “30 Things About My Invisible Illness You May Not Know” here.
• If you read a post, be sure to leave a comment, even if just a short one. All of our bloggers love to hear from you and know that you stopped by!

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You Never Know Who Your Notes May Touch!

This was a quaint little story that is being passed around in emails but someone sent it to me and it reminded me of what our notes are doing! Lisa

There are many times when we begin a certain task that God lays on our hearts and because we think our efforts are minimal and not making a difference, we quit the job that God told us to pursue.

The enemy loves to plant seeds of doubt and lure us into thinking that we are not capable of making a difference in this world, but with God’s help we can overcome and fulfill the destiny that God has for every believer.

If you are going through a situation of doubting your task unto the Lord, then I hope this story will bless and encourage you to never quit what God has laid on your heart because you may never know of the lives that you are touching.

I read of a man who was involved in a tragic accident. He lost both legs and his left arm and only a finger and thumb remained on the right hand.

But he still possessed a brilliant mind, enriched with a good education and broadened with world travel. At first he thought there was nothing he could do but remain a helpless sufferer.

A thought came to him. It was always nice to receive letters, but why not write them–he could still use his right hand with some difficulty. But to whom could be right?

Was there anyone shut-in and incapacitated like he was who could be encouraged by his letters? He thought of men in prison–they did have some hope of release, whereas he had none–but it was worth a try.

He wrote to a Christian organization concerned with prison ministry. He was told that his letters could not be answered because it was against prison rules, but he still decided to commence this one-sided correspondence.

He wrote twice a week, and it taxed his strength to the limit. But into the letters he put his whole soul, all his experience, all his faith, all his wit, and all his Christian optimism.

Frequently he felt discouraged and was tempted to give it all up. But it was his one remaining activity, and he resolved to continue as long as he could.

At last he got a letter. It was very short, written on prison stationery by the officer whose duty it was to censor the mail.

All it said was: “Please write on the best paper you can afford. Your letters are passed from cell to cell till they literally fall to pieces.”

No matter what your situation may be like, you still have the ability to encourage someone who is discouraged and lift up someone who is feeling low.

Take this story as an encouragement to give your all for someone else and do not worry about the results. No good work will go unseen and only God knows of the impact that your life can have on someone else.

Let us not do our good works so that we may be praised, but let us do good works so that others may be lifted up and God be praised because of our intervention.

The only thing that we can take with us into eternity is what we have done for the Lord. There are no bank accounts in heaven to show how much your net worth was on the earth, but there will be accounts in heaven of what you did to show your life as an example in leading others to Him.

— Author Unknown

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“I Just Want To Help!” When People Comment On Your Illness

by Lisa Copen

We may find ourselves shocked to find out just how much we are the on the prayers of loved ones who are a part of our inner circle. They may actually be concerned about us more than we realize in regard to our health. So when they say hurtful things we are left wondering about their intent.

We can do our best to rise above the hurt feelings we experience set us back emotionally. We see that we need to and recognize the concern in their hearts.

There are moments, the “wounds from a friend can be trusted” (Proverbs 27:6). This is because the remarks are truly made out of ignorance. Our loved ones are trying to say something that will get across their love. Their opinions, however, just come out in a way that at times ends up sounding all wrong.

In 1993 when I was 24 and diagnosed with rheumatoid arthritis my life changed rapidly. Those individuals at my church and people at my job felt no reluctance in telling me their opinions about my chronic illness

As a 24-year-old young woman, living over a thousand miles away from the place I grew up, the decisions I was forced into making about the treatment choices felt serious and overwhelming. I meticulously poured through brochures and paperwork researching medications, therapies and alternative treatments.

I went out of my way to see specialized doctors, such as rheumatologists. I looked closely at different medications and their instant side effects, alongside the long-term outcomes of deciding not to use certain drugs.

The variety of advice from people who knew nothing about my chronic condition felt like a personal attack against my level of common sense. I know that may sound that I lacked grace, but. . . that is how it felt. My head said to myself “The audacity!’

I must admit, of those who casually shared ignorant statements, it is those that had their opinions about my genuineness of my faith that hurt the most.

Have you experienced what Proverbs 18:2 says is a friend that “finds no pleasure in understanding but delights in airing his own opinions”?

When I was first diagnosed with rheumatoid arthritis, seeking examples from others who had traveled this unexpected road, I researched the inspiring autobiographies of Christians who who had endured physically suffering, Joni Eareckson Tada and Dave Dravecky.

They have, and still are, hearing the similar remarks and even insults, that I heard. I grasped onto the promise that our Father was the only one who truly saw my heart.

If people I did not know were able to tell these leaders in the ministry of suffering about how they came up short in having enough faith to be completely be given the gift of healing, what caused me to imagine that I was exempt from similar criticisms and skepticism? If for a moment you are wondering if something is not right with you since people suggest that you are deficient in faith to be healed, know what? You are not alone.

In addition, I’ve heard some rather derogatory remarks, and it is always difficult to simply smile and say, “I appreciate your concern, but I do not actually agree.”

Many times it feels as though everyone who is well, desires me to be in a ministry for those who are healed or a ministry that focuses on how to “get people healed” by discovering a secret formula that they believe God uses.

To be frank, I just do not have that passion for a healing ministry. Many of those already are out there. And I would rejoice at being healed, but the zeal that God has called my heart is a calling to serve where people are today– usually, still ill. I want to meet people wherever they are before they been healed. I want to be a part of in a ministry that stands by them if healing doesn’t comes on on their days on earth.

Through the Christian nonprofit I started in 1996, Rest Ministries, for people who live with chronic illness I have been blessed to have the opportunity to exhibit and speak to many audiences, including those on pastoral staff and hospital visitation teams, as well as those living with chronic pain. At every event, however, I am at risk of hearing, “If you had enough faith you would experience healing.”

Often people observe the table of our resources and books and then exclaim, “This is wonderful, but you should try ‘fill-in-the-blank-alternative-treatment-here,’ and then God would heal you, and then that could be your new ministry!”

In some strange way, though I still to get upset with the limitations and a generation of my disease, I am just beginning to understand the Bible verse 1 Peter 4:13. It speaks of considering it “pure joy to suffer for Christ.” If this means that I will have to “walk the walk” (or someday wheel?), then I will do so.

And I am not alone in this regard. You may find many people with chronic illnesses claim that though they are not especially “happy” about their limitations they have found that life is filled with deeper friendships and meaning due to the suffering they have experienced.

Yes. . . I hate pain! And I get tired of it. God does give us grace and endurance to get through another 24 hours. He also provided the Israelites manna so they could live one more day, solely depending on Him. I confess, like the Israelites, I have my moments I want to complain, “L-o-o-r-d, I’m tired of the manna!”

One will realize in time, however, that as she grows closer to the Lord the things people say will become less important and they will slip off of us much easier than we once fathomed. Although it can feel as though people are intentionally trying to say things that hurt, most often the pain they cause is not even known to them. Grow close to God and your faith in man will decrease and the emotions won’t be so painful.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Lisa explains in her book “Why Can’t I Make People Understand?” more ways to get past the need for friends to empathize. Discover it today so your life can be overflow with joy, not frustration.
Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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Are You Blogging for Invisible Illness Week?

Do you have a blog? You may have one and not even realize it! if you are part of a social network like the Rest Ministries Sunroom, you have a blog feature.

Hundreds of people are joining our efforts to blog about either Invisible Illness Week or their invisible illness! If you don’t have a blog, just try to post something about it somewhere and it will help us out a lot. (MySpace, Facebook, any social network you are a part of.)

Whenever you post something it helps us increase our exposure and it’s because of you this week is going to be a success!

A lot of our bloggers have joined Bloggers Unite Invisible Illness Week to let us know when and where and what topic they have blogged about. We encourage you to join (it’s free, quick and easy) so that your blog will get the most readers!

If you have posted your thought somewhere, be sure to let us  know below too in the comments section! We’d love to come and visit your blog!

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People With Invisible Illnesses – Look Out! We Are Everywhere

By Kerri Sweeris

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again… could be an injury.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don’t feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don’t. Know.

Pride I suppose? Just because I feel like crap doesn’t mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, “I’m not drunk I have Myasthenia Gravis, that’s why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly.”

Another that says, “If I’m riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly.”

Probably should have one that says, “I can’t breathe because my muscles are severely impaired by neuromuscular weakness, I’m not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs.”

And, “Please don’t make “Arrrr, matey” sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I’m exhausted. Unless I take the lead, I’m probably not in the mood for jokes.”

I would have a sign that says, “Don’t judge me for parking in handicapped just because I look okay now. When I’m done walking through this store, I may have to stop three times on the way to the parking lot.”

And of course a sign that says, “Please don’t say, ‘But you look so good!‘ For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?”

We are out there. We are someone you know.

Ever wonder why the middle age man on the subway is always so grumpy? Maybe he’s in chronic pain.

Ever think that the young woman who “can’t control her child” on the train has an invisible illness that makes her so weak and tired it’s truly a miracle she and her child are even ON the train?

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don’t want to be invisible anymore.

Kerri Sweeris is a 39-year-old mom to her miracle child, Jacob, who just turned four. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness

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Rainbow of Hope Sticky Notes Encourage People

By Shari Wilks

This is my first year as a member of Rest Ministries and this is also my first year participating in the Invisible Illness Week.

This past Monday I had to make a trip to the post office to mail a letter and as I walked into the lobby I looked over my shoulder and saw a bulletin board. The cork bulletin board contained many different items pinned to it such as business cards, flyers advertising vehicles for sale, information offering baby sitting services, church concerts, tutoring and more.

As I was looking at the different items posted on that cork bulletin board I giggled and thought to myself, as Lisa Copen would say, I’m feeling a little mischievous!

I had just placed a few packs of post it notes in my purse along with a couple of Sharpie pens right before I left to mail my letter. I borrowed them from my daughter because she is “The Post It Note Princess” in our house. She leaves them everywhere and is very fond of the bright, flourescent colored post it notes.

I had a pack of every color. . . red, orange, yellow, neon green, blue, purple, and pink. I began to write messages of encouragement on the first post it note of every pack, a total of seven notes, stuck a push pin in each note and lined them up to form a nice little rainbow in the center of the bulletin board.

I stood back and smiled at my Rainbow of Encouragement. The only thing missing was my camera. I wish I could have taken a picture of it to share at invisibleillness.com.

I quickly forgot about the camera and thought to myself, I have no idea if anyone will take one of these notes, but I am sure that my Rainbow of Encouragement will definitely grab someone’s attention!

I returned to the same post office to mail a package today. I walked into the lobby and glanced over at the bulletin board and guess what?

My Rainbow of Encouragement was gone! Every little vibrant colored, encouraging post it note was missing! I smiled and thought to myself, Thank you God, I guess My Rainbow of Encouragement actually turned out to be Your Rainbow of Hope because at least seven more people who have an invisible illness will come to Rest Ministries and get visible hope!

Invisbleillness.com – “Each One, Can Reach One” . . . and I’m eager to reach many more.

Shari has had Myasthenia Gravis for 16 years and fibromyalgia for a year. She has had many ups and downs with MG, also known as remissions and relapses. She says, “My last MG relapse caused the fibromyalgia and also depression. I was in the deep dark tunnel called ‘life’ for almost a year before I saw the Light. I am happy to say that by God’s grace I am doing much better because I have decided to center my life around God and NOT my chronic illness.” Visit Shari’s Page at the >Rest Ministries and HopeKeepers Sunroom.

Do you have a story to share? Post something below and we will contact you!

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Invisible Illness Week Online Virtual Conference Registration Now Open

You don’t even have to get out of bed for this virtual conference!

Will you be attending at least one Invisible Illness Awareness Week Workshop?

Here are the details about the seminars of Invisible Illness Week:

• This year, 2010, we will have one seminar each day, 90 minutes long, with guest experts on panels
• M-F, September 13-17
• They will be held online, for free
• 10:30 AM Pacific time, USA
• Go to www.blogtalkradio.com/invisibleillnessconf at the time of the conference and the program will play out of your computer speakers
• If you miss it you can listen to it later, and within a few days they are also imported into itunes if you listen to podcasts on an ipod.

Here is a time zone converter.

Register below. It’s free. We basically just need your name and email, but if you’d like to share anything with us (including a web site address if you blog about your illness), we’d love to get to know you better. Leave any comments in the “bio” section if you’d like.

If the form does not work for some reason, just email us “yes, I am coming/listening in!”

http://invisibleillness.eventbrite.com

Are on Facebook?

If so, be sure to RSVP there too . Why? It helps us spread the word by popping up the little Facebook ad in the right hand column. Plus, we have a better idea of how many listeners to expect.

Remember, you can listen to all of the programs from your computer. They will be broadcast via Blog Talk Radio. If for some reason you can’t get it working, within moments of the program being complete, you can listen to it archived at Blog Talk Radio and later on itunes.

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10 Things I’ve Learned From Chronic Illness

Jamee over at A New Kind of Normal  shares some of the things illness has taught her:

1. There is some truth to the old adage “What doesn’t kill you will make you stronger” (even though I think that things that in fact may be killing us can still make us stronger). After my initial diagnosis I never thought that I would ever be able to be strong again but the past 7 years have taught me that I am stronger now than I ever was.
2. Sometimes you need to be like Gibbs and go with your gut. If you feel like something is not right, it probably isn’t and you need to learn to be your own advocate. Ask questions and push for answers. While you cannot trust everything you read on the internet, it is important to research and educate yourself.
3. Sometimes laughter is the best medicine. When I’m feeling blue, popping Finding Nemo can do wonders for my spirit, especially now that I can share it with my daughter. Dorie is a great doctor :)
4. Doctors are not always right and there is nothing wrong with asking for a second opinion. I’m not sure my Celiac would have ever been caught had I not sought a second opinion.
5. Buy cute pajamas to wear after surgery. It gives you a little bit of pampering when you need it most. If you know you’re going to be donning a hospital gown for a couple days, buy cute socks. Believe me, after 4 surgeries, it goes a long way!
6. Finding a support team/group is absolutely essential. I do not know if I would have ended up where I am today with the support of others. After my endometriosis diagnosis I was lucky to find GirlTalk (an online support group through the Endo Research Center) that I became a member of and now serve as the Program Director. During our infertility treatments, I found a wonderful group of ladies that provided support and encouragement. It doesn’t matter if you find a support group that meets in person or online. Knowing that you are not alone gives you strength to keep fighting the fight.
7. Cereal can be a perfectly acceptable meal for breakfast, lunch, and dinner.
8. Your faith gets challenged. While I never doubted God and His grace and love, I had my share of questions. And it was through the wrestling and searching for answers that I learned more about God than I ever did in seminary. Not that I have all of the answers to my questions. In fact I may have more questions know than ever but I know who I serve and I know that I can trust His character and that that is enough for me.
9. Find an outlet whether it is blogging, painting, or songwriting. Healing comes when we open ourselves up and acknowledge our hurts, hopes, and dreams. When I began this blog in 2007, I would have never guessed how redemptive it would become to my faith and health.
10. You are more than your disease/diagnosis. It is important to never ever lose sight of that. I am determined to let the world know that while yes I may have multiple illnesses, I am a person and a warrior and I will not be overcome.

Jamee is a wife, a mom and a follower of Christ. She says, “I am also a warrior battling multiple chronic illnesses. In life, I have learned that sometimes things happen and life doesn’t always go back to the way things were. Instead, you must find a new kind of normal. ” Read her blog A New Kind of Normal.

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Share About Your Life with Illness With Our “30 Things…” Meme

Last year hundreds of people participated in our “30 Things” Meme. We’d love to hear from you again (even if you filled out the 30 Things About My Invisible Illness You May Not Know last year, you may have some new answers this year… it will be interesting to see which ones!).

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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