POTS Documentary

The Dysautonomia Information Network is currently working on a POTS documentary. This has been in the making for a while now, and I am excited to announce that they have the trailer ready for preview!

For those of you who may not know, POTS (Postural Orthostatic Tachycardia Syndrome) is one of the types of dysautonomia that I have. Symptoms and severity can vary from patient to patient, but this documentary will give you an idea of some of the challenges that those of us with POTS face.

Changes: Living with Postural Orthostatic Tachycardia Syndrome

For more information on POTS or dysautonomia, visit http://www.dinet.org/.

What to Pray for, Beyond Physical Healing

As we pray for those with chronic illnesses, it is wise to pray not only for healing, as is our tendency, but to pray that God would accomplish His purposes through those illnesses.

I found this post on Randy Alcorn's blog to be very encouraging:
What to Pray for, Beyond Physical Healing

Lessons Learned

God has taught me a lot over the years with a chronic illness. One of the things that I have learned is to be content with my health and physical limitations. It would be great to be able to walk a lot, climb, and run again, but there is much more to life than physical strength and energy. Besides, I really don’t have it so bad. There are people in the world who are more disabled than I am, but don’t have anyone to take care of them. I have been blessed with a wonderful husband, son, and family to help me. I have a wheelchair and a comfortable bed at night. Many people don’t have that.

I have learned that I need to embrace this life that God has given me, not simply be content with it. Because of what we have been through, God can use Will and me in ways that He couldn’t if my health were good.

I have learned that God has a plan and a purpose even in suffering. He can use my health problems for my good and for His glory. God is at work and He has a plan that is far better than anything we can imagine! There are things that God has taught me that I wouldn’t have learned were it not for what I’ve been through because of my health. Sometimes we have to take the painful road to learn, but if it brings us closer to God then it is worth every step of the way.

I have learned more about God’s sovereignty. Yes, God is sovereign and He could heal me if He chose to do so. However, since God is sovereign, He is under no obligation to heal me. He is God! He can do whatever pleases Him and brings Him glory. We often put God in a little box and think of Him as simply someone from Whom to ask favors. However, we need to keep in mind that God is so much bigger than we can understand. He is completely holy, all powerful, all knowing, and all wise. God is in control. He is not bound by time. He is above all. He is worthy of all praise, honor, and glory. God is also loving, patient, gracious and He longs to hear from His children. He wants us to pray to Him, but when we do, let’s not forget Who we are talking to! We are talking to the Maker and Sustainer of the Universe!

I have learned that I can trust God no matter what. There are a lot of unknowns that come along with living with dysautonomia. So far treatment hasn't produced any dramatic improvement in my health. Barring a miracle I will probably be disabled for the rest of my life. But that is okay. I want whatever God's will is for me. I want God to be glorified in my life whether I am sick or healthy. If living a life with a disability will bring the most glory to God, then so be it. After considering all He has done for me, suffering a little bit for a few years on earth is a small sacrifice to make. God made the ultimate sacrifice for me when He sent His Son to die on the cross. Jesus died a horrible death. The situation was not good, but God used it for great good - the salvation of all who believe!!! Jesus knows what suffering is. God knows what sacrifice is. I can certainly trust Him to know what He is doing in my life. It is worth following God and obeying Him at any cost.

Wheels for the World

This was my first wheelchair. I purchased it while living in Alaska. It was a good chair, and it took me to many places. With this chair I was able to go shopping with Will. I was able to go to church. It took me to people's houses for visits. It took me around the Alaska Sea Life Center in Seward, and it took me around the Georgia Aquarium. It took me to and from the hospital when my son was born. It came with us on our 5,000 mile move from Alaska to Georgia. On the long trip it took me in and out of hotels, in and out of roadhouses, through vineyards and orchards in British Columbia, on a ride through Badlands National Park, and out to see Mount Rushmore. It has taken me to the swimming pool, and it took me to Cow Appreciation Day a couple of years ago (costume included!). I have a lot of memories of good times had because I had a wheelchair to take me and someone to push me.

Now I have a newer wheelchair that better suits my current needs. My old one was rarely used anymore. I did still use it occasionally, but I couldn't say that I truly NEEDED a second wheelchair.

I know that there is someone out there who needs my old wheelchair more than I do. I remember reading about Wheels for the World, a ministry by Joni and Friends, and I wanted to give my old wheelchair to them. They take old wheelchairs, fix them up, and bring them to individuals in foreign countries who don't have access to wheelchairs and other mobility aids. These items that we consider a necessity, they consider a luxury.

In the book, When God Weeps, one of the chapters shared about a wheelchair outreach trip to Africa. Here is an excerpt from the book that shares a little about that trip:

We westerners sat upright on benches, facing the ragtag crowd. "And now, Christian brothers and sisters," shouted the pastor, "let us give a warm welcome to our most gracious friends from America who have traveled very far to bring us wheelchairs and Bibles!" Cheers erupted; then, a welcome song. The full rich drone of African harmony twisted my heart, and tears fell freely as we listened to the disabled people applaud each other's testimonies and to the readings of Scripture. A half hour of constant praise passed easily, and then I was asked to speak.

"Thank you, friends, for welcoming us," I said as I wheeled into a clearing on the sidewalk. My JAF friend pushed a wheelchair-gift alongside of me. "God is good!" someone shouted as the first child was placed into it. Another chair, another disabled person. Hands began clapping in rhythm as a flow of crutches and wheelchairs were passed from our group to theirs. More syncopated clapping, loud and snappy. Ama bobbed her head in time, beaming a proud smile as she rubbed her stumps on the leather armrests of her chair. The teenage boys with polio started a dance in the clearing.

"Look," I said to a team member, "even the people who know there aren't enough wheelchairs to go around - they are so happy for those who get something." 

The rising moon was lightening the eastern edge of the night. As we readied to leave the slums, the Africans bid us farewell with one more song:

Because He lives, I can face tomorrow.

Because He lives, all fear is gone.

Because I know, I know He holds the future;

And life is worth the living just because He lives!

Is it the neon glare? I wondered, as I squinted at their smiles. No. It was joy out of this world.

My pastor friend lit the way back to the van. As we jostled across the street, my thoughts were jumbled. So much gladness in the midst of misery. Joy, like a fresh daisy, sprouting up from manure.

"What happens to Ama when it rains? Who takes care of her?" I asked.

The glow of the flashlight gave a sheen to his smile, "God takes care of her."

Oppressive heat. People penniless. A girl with no hands, no legs to walk, no bed, and not even a fan, living on concrete. It doesn't sound like God's doing a very good job. I recall hearing something; a boy who lived in a box by the trash heap said, "You westerners are the ones we can't understand. God has given you so much, you have been so blessed...why are so many people in your country so unhappy?"

From When God Weeps, chapter one.

Just last week a man from Wheels for the World came to pick up my wheelchair. It will be fixed up and brought to someone in a foreign country who is in need of one. I am excited to have the opportunity to share my wheelchair. It has taken me many places. It has traveled from Alaska to Georgia to Kentucky, and now it will travel to a foreign country to be given to someone else. I hope that someday in heaven I will be able to meet the person who receives my wheelchair and hear how they were blessed by it. How exciting that will be! I will ask him or her to run through a garden with me or do cartwheels down the streets of gold on the new earth. We won't need our wheelchairs anymore because we will be made new! Exciting indeed!

Weary and Broken, but Pressing On

Today has been a hard day. It has been one of those days when I am weary from the fight. I'm tired. I'm weak. My body doesn't want to move. Simply watching TV was too much work this afternoon. All I could do was lie still in bed. No moving, no talking. I could barely pray because my mind couldn't formulate thoughts. I felt trapped. Stuck in this body, stuck in bed. Unable to sleep. Unable to think. Weakness won out. For a few moments my lungs and diaphragm forgot what they were supposed to do and took a break. My brain had to kick in and remind them to work again.

My body is broken. Usually I can pace myself carefully and make it through the day, even on the bad days. Then there are days like today when I am reminded of just how weak I can be, and just how hard things can get. My body won't do what it was designed to do. It won't even pretend to do what it is supposed to do. There is no faking it today. No one who walks in to the house today could fail to see that I am actually ill. I can't smile to hide the weakness and fatigue I feel right now. This illness is real. My body is growing weaker. I feel like I'm falling apart.

On days like today I long for heaven. I long to be with Jesus. I long to have a resurrection body. I long to live on the new earth. I long for this race to be over. I long for the finish line.

I head over to my friend's blog. She faces the some of the same illnesses I do, plus other trials of her own. She knows what this is like. She's real. She's honest and refreshing. I'm always encouraged after reading her blog, and today is no exception. She encourages me to keep on keeping on.

Hebrews 10:35-36 encourages me to always persevere, especially in those moments that make me want to give up the most -"So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised."

On the Day of Judgment, we will be richly rewarded if we did not give up on our faith in Christ despite danger, persecution, and difficulty. We will shine like the stars in the heavens... with brightness that comes not from a new bulb, but from the glory of God himself.

Colors of Qavah: Just Out of Reach

This is the life God has chosen to give me. This is the path He wants me to walk. I will live this life. I will walk this path. I may have a good cry every now and again, but I will press on. I will embrace this life and the opportunities I have. Some days it's just hard.