Kevin was diagnosed with Systemic Rheumatoid Arthritis at age six and was told he would be in a wheelchair by age 20. Aside from affecting the joints, this rare form of RA also attacks the lungs, heart, liver, spleen and other internal organs. In “middle age” (his words, not ours [smile]) he still does not require a wheelchair and has survived 3 events that should have taken his life, including a near-death experience. In addition his arms were once covered in burning gas, yet not even the hair on his arms was singed. Through all the miracles, he credits God with the success in his life. You can read more about Kevin including many blog posts he has added to his page in the Sunroom.

Kevin began this group, in part, because writing has helped him to cope with issues in his own life. Sometimes it is just the process of taking time to sort through one’s feelings. At others, it redirects one’s own thought processes in a way that allows God to reveal something important.

Writing also provides a medium to teach others about chronic and rare diseases. The story, titled “The Conscientious Doctor,” in the Writing for Therapy group depicts how even medical professionals are underinformed about Systemic Juvenille Rheumatiod Arthritis. It also shows how family members sometimes underestimate what patients with chronic illness tell them. The poem by RSD Girl, titled “Sometimes Mommies Cry,” not only shares insight about RSD it also reveals a part of life many parents that have chronic illness must deal with.

We couldn’t be more happy about this because it also goes along with our National Invisible Chronic Illness Awareness Week theme of “Each One Can Reach One.” We love the scripture 2 Corthinthians 1:3,4:

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”

And if by chance, writing is not your thing but art is, be sure to check out Amber’s new group “Art Therapy.”

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Parenting is exhausting. What do you do when you have extreme fatigue and illness dragging at you?  It is easy to tell yourself, “just one more thing” or “I’ll figure a way to make it happen.”  Then you have the pressures from our loved ones. A child not understanding why mommy can’t come out to play.  A husband who just came home from work and doesn’t understand why dinner isn’t done.

Are we failing in some way? In many ways? I sometimes think that.  I always think “I should….”  or “I could..”, “If I was super mom I would”  I call it the ‘oulds. Those things that didn’t get done that leave you feeling guilty.   Are we super women? No,  sadly we are not and despite what the TV would have you believe neither is the next door neighbor.  So revel in your lack of a cape. Let go of the guilt. The Lord has no intention of you sitting  around crying for one of the ‘oulds!

So you have fatigue problems. I do too, and it can destroy a day. While sick this past winter I was able to get from my bed to the couch. That was it.  I slept for the day. Not well, with that type of fatigue sleep no matter how much you sleep it is never enough.  I was only able to rely on  my hubby to take over the kids. When I had to tell a child that I was too tired I always hugged them and asked them to pray for me. I told them the truth, that I wanted to get up but mommy’s body was too tired.

Children can better wrap their mind around a problem if you give them a solution. I told them to pray. My children love God and believe that the Lord will heal me. That was something they could trust in.  By hugging them and letting them know that I wasn’t happy too. The situation became mommy is not sleep because she wants to but because she is sick.

Be open with your husband and  tell him how you are feeling. Don’t expect his ESP to pick up on your slumped shoulder or cough to let him know. My hubby always tells me to talk to him and try to be precise. Like are your legs jittery? For him I believe it is because he is a fixer. Present a problem and he works out a solution. Most men are that problem oriented.

Even if you are left without the energy to help with the house or other normal “wife ” duties. Try to uphold your Biblical wife duties. That is to support your husband. Be of a mild, joyful manner so that he is uplifted by your very presence.  Together a wife and husband are incredibly strong even when one is sick. Think why else would Satan be trying so desperately to destroy that which God has put together. He knows that two in Christ are ten times stronger and will grow stronger as time passes.

Chronic fatigue is a limitation but it is not an end to a quality family life.  Take time to enjoy your children. Let them know how much you can do in advance, such as mommy can play cards with you but I can’t go to the park. Talk to your husband be clear and loving. Trust that he will protect and help you through you troubled times. Uphold him so that he knows you will support and encourage him at all times. Trust in the Lord.

Heather Laurie is a christian wife, and mother to 5 children and 2 angels. She suffered with an unknown illness most of her life recently finding out she had lupus and a genetic disorder. Her children also have that genetic disorder. The Lord has led Heather and her husband Chris through these experiences to create a ministry dedicated to serving those with special needs. You can find them at www.LaurieFamilyMinistries.org or www.SpecialNeedsHomeschooling.com

Laurie Family Ministries

The program will be live with Mary Beth Chapman (author and wife of Grammy award winner, Steven Curtis Chapman) who recently had their young daughter pass away.

They will also be talking with Jeromy Diebler, the lead singer for the popular Christian group FFH who was diagnosed with multiple sclerosis in 2007.

The program should be a real comfort for anyone who has experienced the loss of a loved one, the loss of a dream or any other loss (those of us with chronic illness have had a few, haven’t we?).

The program is actually set up so that viewers can call or email in questions to guests and actually get advice about how to handle their situations LIVE. I have to admit, I’ve not yet had a chance to watch one of these interactive shows, so am eager to check it out.

And if you miss it? You can watch the show live at www.yourfamilylive.com (where the archive will also be posted). According to Focus on the Family the program will also re-air on Sky Angel and other cable TV channels.

Below is a short video promo about the show.

By Shelley Echtle

Years ago after sudden widowhood, my friend Brenda asked me, “What are you going to do with your life now? Do you have professional goals?” I blinked, staring at her like she spoke Martian gibberish. I told her I wanted to be a speaker, an encourager, then as years rolled by, forgot my simple statement.

Years later, after graduating from college, I was really ready to take on the world of computers and corporations. But fibromyalgia struck, actually crawled onto my career goals. Slowly the sour pains of reality hit, and I found myself disabled.

Marrying again, I moved to a strange new town to be with my husband, and rebuild my life. But the fibro-monster kept lunging forward, first stealing my brain, then my energy, and finally my sleep. My husband suggested I find a support group.

I found one, with two other people. Then it was about to dissolve, and I feared being alone in my weakened state. I agreed to “Take over.” What? With one other known person? But that didn’t hinder me. I posted on the website in place and then posted on other free sites. I found Kijiji, and Craigslist and so many other venues. I then scheduled my first meeting. Fifteen people showed up to listen to my acupuncturist’s discussion.

The group grew. Some people needed more encouragement than others. Some were beaten down by not having a supportive family, or lack of knowledgable doctors. Some were alone. Some were new to the Fibrofog and other health issues. I kept posting. Soon we reached 50 members, then 100.

Since October to July, we have 205 members and keep growing. We speak words of encouragements, pray for one another and now have almost weekly meetings. As I prayed recently for a member, I realized how much she depended on our group to encourage her. Then God whispered those words of long ago… “I want to be a speaker, an encourager.”

God fulfilled my dream by providing me with this “career.” I didn’t necessarily choose it, but it chose me. I know now, more than ever, even after widowhood and single parenting and all the challenges I have faced, that God is faithful to fulfill his purpose in my life, and provide the sparkling fulfillment of my own!

Thank you God! May I live up to the expectations you have put before me!

Shelley Echtle is 48, living in the Dallas area to the wonderful Bear who helps and supports her devotion to the North Texas Fibromyalgia Meetup & Support Group. With 3 grown children, she is enjoying a new life with her husband, a new grand baby and the fulfillment of her dreams. Her support group has members nationwide.

Grief

When in my soul bone rasps on bone the hollow ache of loss
The muffled desperation nails my spirit to the cross.
Cries swell imprisoned in my throat, the strength’s not there to scream.
I clamber nightmare days in hopeless hunger for a dream

And in the many ways I walk down low to reach the bottom stair
I hear His still small voice repeat, “Dear Child, I have heard your prayer.
Then His tiniest, but mightiest angels take the strands of what’s not there
And weave a living miracle in the mist of mourning prayer

HIS PROMISE TO ME
I will anoint your days with quiet prayer and gentle praise of Me,
Peace as lacy fragrance floating blossoms in a breeze,
Whispering perfume of grace to every eye who sees
The splendor of My Son,
Whose Light will heal you whole!
Through your many tears His Glory beams a rainbow in your soul.

Ronda Feuerstack, ©1992

_________________________________

Two Special Horses

Just up the road from my home is a field, with two horses in it.
From a distance, each horse looks like any other horse.
But if you stop your car, or are walking by, you will notice something quite amazing…
Looking into the eyes of one horse will disclose that he is blind.
His owner has chosen not to have him put down, but has made a good home for him.

This alone is amazing.

If you stand nearby and listen, you will hear the sound of a bell.
Looking around for the source of the sound, you will see that it comes from the smaller horse in the field.
Attached to the horse’s halter is a small bell.
It lets the blind friend know where the other horse is, so he can follow.

As you stand and watch these two friends,
You’ll see that the horse with the bell is always checking on the blind horse,
And that the blind horse will listen for the bell and then slowly walk
To where the other horse is,
Trusting that he will not be led astray.

When the horse with the bell returns
To the shelter of the barn each evening,
It stops occasionally and looks back,
Making sure that the blind friend isn’t too far behind to hear the bell.

Like the owners of these two horses,
God does not throw us away just because we are not perfect
Or because we have problems or challenges.

He watches over us and even brings others into our lives
To help us when we are in need.

Sometimes we are the blind horse
Being guided by the little ringing bell of those who God places in our lives.
Other times we are the guide horse, helping others to find their way….

Good friends are like that.
You may not always see them, but you know they are always there.
Please listen for my bell and I’ll listen for yours.

And remember…
Be kinder than necessary-
Everyone you meet is fighting
Some kind of battle.
Live simply,
Love generously,
Care deeply,
Speak kindly…….

And leave the rest to God!

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