Monday, August 25, 2014

Joni and Friends 35th Anniversary

Happy 35th Anniversary, Joni and Friends!

Joni and Friends is celebrating 35 years of ministry! I am very grateful for Joni Eareckson Tada and for the ministry of Joni and Friends. I would not be where I am today in my walk with the Lord were it not for Joni and Friends. The Lord has used this ministry to teach, encourage, and equip me to live life well with a chronic illness. Today I would like to share about how this ministry has impacted me.

I first heard of Joni when I was a child. I remember seeing her movie and learning about her life with quadriplegia. I admired her artwork, and I was especially amazed by the fact that she could create such beautiful pictures by using her mouth to draw and paint! I remember looking through her first book, Joni: An Unforgettable Story, and seeing pictures of her before and after her diving accident. She was a remarkable woman who had learned to trust God in the midst of suffering, accept the life that He had given her, and serve others affected by disability. Little did I know as a child what an impact Joni would have on my life in the years to come.

I struggled with dysautonomia as a teenager and in my early 20s. When I was 23 the dysautonomia began to affect me so much that I had to quit work completely. Soon my health deteriorated to the point that I became primarily homebound. This was a challenging and lonely time for me as I dealt with various changes that accompany life with a disabling chronic illness. There was much that I needed to learn about my illness and how to live well with it. I had to learn new ways of completing physical tasks, when to ask for help, and when to do something on my own. I especially struggled to learn what it meant to be an excellent wife now that I was disabled.

In those early years of being so sick I felt lonely and ill-equipped to live life well with dysautonomia. I didn’t have a solid understanding of suffering from a biblical perspective, but I did have a deep, abiding peace in the Lord during that time. I trusted that all of this was in His hands. I knew that He could heal me, but that He didn’t have to do so. I worked on growing in contentment and joy. The Lord’s grace carried me through those hard early years of being so sick.

After a couple of years I found the ministry of Joni and Friends online. Because of Joni and Friends I felt less alone in living with a disabling chronic illness. Through their resources and Joni’s books, I learned so much from God’s Word about illness, suffering, disability, God’s sovereignty, Heaven, perseverance, joy, and humility. The Lord used Joni and Friends to help equip me to live life well with dysautonomia.


Just a few of my favorite books by Joni Eareckson Tada
A few of my favorite books by Joni Eareckson Tada

The first book I read by Joni was When God Weeps, which she co-authored with Steve Estes. It was so refreshing to read a book that dealt with disability and suffering on both a practical and a theological level. This book was just what I needed. God used this book to teach me more about His sovereignty and His plan and purpose in suffering. He used it to strengthen and grow my faith. It was in reading When God Weeps that I began to understand more fully the meaning of 2 Corinthians 4:16-18. These verses quickly became my favorites and helped me through my hardest days.

I have gleaned from Joni’s wisdom not just through her books, but through the Joni and Friends website. There is a wealth of information, encouragement, and biblical teaching that can be found in the blog posts, radio programs, television programs, daily devotion emails, and in the bookstore. I have benefited greatly from all of these resources.

One of my favorite things about reading on the Joni and Friends website is that I get to learn about people with other types of disabilities. Their personal stories and examples of faith are a challenge and an encouragement to me. It also provides me with the opportunity to pray for them in their suffering.


wheelchair
My wheelchair that was donated to Wheels for the World

Through the Joni and Friends website I learned about the Wheels for the World program. In 2009, when I had an extra wheelchair, I had the privilege of donating that wheelchair to Wheels for the World. My wheelchair went to the country of Peru. I still think about and pray for the person who received my wheelchair. I hope that someday in the future I will be able to donate another wheelchair to Wheels for the World.

Thank you, Joni, for the words of wisdom you have shared in your books, on the radio, and on your blog. God has used your biblical teaching to help equip me not just to live well with dysautonomia, but also to blog about life with a chronic illness from a Christian perspective.

Thank you, Joni and Friends, for serving me, and countless others, who are affected by disabilities. May the Lord continue to bless your ministry. Happy 35th Anniversary, Joni and Friends!

--

P.S. There are many bloggers who are writing blog posts in celebration of Joni and Friends 35th Anniversary! You can find their blog posts here on the Joni and Friends 35th Anniversary Blog Contest Pinterest board. I have been blessed by reading these posts, and I know you will be too!

Friday, August 15, 2014

Five Minute Friday: Tell

It is time for Five Minute Friday! We gather online and write for just 5 minutes. It is quick and easy blogging. Lisa Jo's hosted Five Minute Friday for nearly 4 years, and now she has passed the baton to Kate Motaung. Kate will be hosting Five Minute Friday each week now. This week the writing prompt is: Tell.



Tell

Tell me the story of Jesus. That is what I need to hear. Remind me of His love for me and how He died on the cross for me. Tell me how He rose again and conquered sin and death. Tell me about Heaven and the home He is preparing for me. Tell me of His mercy and grace. Tell me of His power and wisdom. Tell me of His goodness. Tell me of the joy that is found in knowing Him.

Tell me about Jesus on the good days, when I’m tempted to think that I can go through life on my own strength. When I forget that I need Him for every breath. Remind me of my dependence upon Him. Tell me of Jesus and remind me who I serve. Tell me of Jesus. Tell me of the good news that I always need to hear.

Tell me about Jesus on the bad days, when I am tempted to despair, when I am lonely and losing heart. Remind me of the joy that I have in Him. Remind me of the hope I have because of all that Jesus has done for me. Remind me of His love and faithfulness to me. Remind me that I am never alone. Tell me of Jesus. Tell me of the good news that I always need to hear.

Tell me the story of Jesus, and I will tell you too.


Tell Me the Story of Jesus  
Tell me the story of Jesus,
Write on my heart every word.
Tell me the story most precious,
Sweetest that ever was heard.
Tell how the angels in chorus,
Sang as they welcomed His birth.
“Glory to God in the highest!
Peace and good tidings to earth.”

Tell me the story of Jesus,
Write on my heart every word.
Tell me the story most precious,
Sweetest that ever was heard.

Fasting alone in the desert,
Tell of the days that are past.
How for our sins He was tempted,
Yet was triumphant at last.
Tell of the years of His labor,
Tell of the sorrow He bore.
He was despised and afflicted,
Homeless, rejected and poor.

Tell me the story of Jesus,
Write on my heart every word.
Tell me the story most precious,
Sweetest that ever was heard.

Tell of the cross where they nailed Him,
Writhing in anguish and pain.
Tell of the grave where they laid Him,
Tell how He liveth again.
Love in that story so tender,
Clearer than ever I see.
Stay, let me weep while you whisper,
Love paid the ransom for me.

Tell me the story of Jesus,
Write on my heart every word.
Tell me the story most precious,
Sweetest that ever was heard.
Tell Me the Story of Jesus, by Fanny Crosby, 1880

Monday, August 4, 2014

My TiLite Wheelchair: One Year Later

Last year I got a new wheelchair, and I had so much fun choosing the color and picking out light up wheels! There were also many other decisions that had to be made regarding my wheelchair needs. Before making my final decisions, I did a lot of research and asked several friends about their personal wheelchairs and recommendations.

I ended up choosing a TiLite Aero R wheelchair for both looks and function. I have been very pleased with this new wheelchair, and I would like to share some more specifics about this chair with you. I know that many of you have various chronic illnesses and disabilities, and I hope that this information will be helpful for those of you who need to make a wheelchair purchase.



This is my TiLite wheelchair as it was originally put together. The seat had a two inch "dump." This means that the back of the seat was two inches lower than the front of the seat. This makes it easier to stay in the chair when the wheels hit a bump. I have found that bumps are common on concrete curb ramps. The ramp doesn't always start at street or parking lot level. Instead, it might start an inch or so above. I can't tell you how many times, in my old wheelchair, the wheels would hit the curb ramp and I would almost go flying out of my seat! The "dump" helps to prevent this. Unfortunately, the two inch dump was uncomfortable for me and caused pain. My wheelchair has since been adjusted to have only a one inch dump. This is more comfortable for me, and it still helps to keep me in the wheelchair if I hit a bump.

My original TiLite wheelchair had a lower back than what I have now. The back pictured above wasn't tall enough for me. It hit below my shoulder blades, and it didn't provide enough support. My body grows tired quickly, and I needed a taller back rest to lean against. 

My wheelchair back used to sit straight up. The chair was set to the specifications that most users like, but the angle was not good for me. I need to have a back rest that leans back a little. I do not have the strength or energy necessary to sit straight up for more than about 10 minutes. My wheelchair back now angles back so that I can lean against it easily.

The wheelchair above is pictured with a standard foam cushion. That was the only type of cushion that my insurance would cover, so I gave it a try. It was comfortable for a short time, but not for very long. Because of an injury to my tailbone 11 years ago, I need a much higher quality cushion.



This is my TiLite wheelchair as I use it today. It has a one inch dump, a higher back rest, and a Low Profile Roho cushion. The back angle also leans back more than it did originally.

Here are the things that I especially like about my new wheelchair:
  • A Roho cushion
  • Rigid frame
  • Pneumatic tires
  • Side guards that are separate from the armrests
  • Footrests that tuck in
  • Adjustable tension backrest 
  • The color: Electric Plum
  • The light up wheels!



A Roho Cushion
The Roho cushion is the only cushion I have found that keeps my tailbone from hurting because of sitting. It is expensive, but well worth the purchase if you need it. I have been using Low Profile Roho cushions for 8 years now.



Rigid Frame
The frame for my wheelchair is rigid, not folding. This makes for a more stable seat and a more comfortable ride.

Pneumatic Tires
Having air in the tires, instead of an airless insert, also makes for a more comfortable ride.



Side guards that are separate from the armrests
This is especially handy when I want to sit at a table. Armrests usually bump into the table and prevent the person in the wheelchair from scooting all the way up to the table. When the armrests and side guards are one piece, I either have to sit farther back from the table or go without both armrests and side guards. If it is rainy, snowy, or muddy, side guards are a must! I like the option of having one without the other.



Footrests that tuck in
This is a less common option in rigid wheelchairs, but I really like footrests that are removable and/or able to tuck in. This makes it easier for me to get in and out of the wheelchair. It also makes it easier to sit at a table. Tucking the footrests in allows me to scoot all the way up to the table without the footrests bumping into table legs.



Here is a side view of the footrests while they are tucked in.



Adjustable tension backrest
One of my favorite features of this wheelchair is this special back rest. There are three large straps at the top, and one large strap near the bottom of the back rest. I tighten the lower strap, and this gives much needed lumbar support. I keep the tops straps a bit looser.



This is the back rest after the cover has been placed over the tension straps.



I like the purple color of my wheelchair, but my very favorite thing is the light up wheels. They are such a fun feature! I regularly receive compliments about the light up wheels. As I had hoped, they have been an ice breaker, and they seem to make me and my wheelchair more approachable. They also make it totally fun for my children!

Before choosing this wheelchair I did a lot of research. Even after all of my research, there were still a few things I hadn't expected. Here are the things I wish I had known before purchasing this chair:

Pneumatic tires have to be pumped up every 2-4 weeks. My husband fills them up for me, so it isn't any extra work for me, but it is for him. Even with the maintenance needed for pneumatic tires, I would choose them again. The comfort of the ride is worth it, and Will doesn't mind taking care of it for me. However, if you live alone and would need to fill the wheels up yourself, it might not be worth it.

The tubular armrests are connected to the backrest, not to the seat of the wheelchair. This means that when the angle of my backrest is adjusted to recline slightly, the armrests angle upward. This not only looks funny, but it isn't particularly comfortable. Currently my wheelchair back isn't reclined very much, so the upward angle of the armrests is only slight. However, due to my health declining this year, I have had greater difficulty sitting up in my wheelchair. I need to have the back angle adjusted so that it leans back a little more. This will cause the armrests to angle upward even more.

The other problem with these armrests comes when I lean on them to adjust my position in my wheelchair. Because they are connected to the backrest, the backrest tilts forward about 1/2 an inch when I lean on them heavily to adjust my position.

I currently have swing away tubular armrests and separate side guards. Although I do like having side guards and arm rests as separate pieces, if I had it to do over, I would choose to have the side guard and armrests as one piece that connects to the seat frame of the wheelchair.

The handle grips have not stayed on securely. I was quite surprised to have this difficulty. This is my third wheelchair, and I have never had a problem with handle grips coming off on my previous two wheelchairs. On most days the loose handle grips are just annoying and only shift a little bit. However, if I am going down a hill, this small problem quickly becomes very dangerous. When being "pushed" down a hill, the person in the wheelchair isn't actually being pushed. Instead, the person standing behind the wheelchair is holding onto the handle grips to slow the wheelchair down and keep it from rolling too quickly down the hill.

Last fall we went to the zoo in Omaha, Nebraska over fall break. There is a long hill at the zoo that I rode down in my wheelchair. Will held on to the handles to keep me from zooming down and crashing. By the time we were back on flat ground, one handle grip had come halfway off, and the other handle grip had come nearly all the way off. It was then that we realized that these handle grips aren't securely fastened to the wheelchair. If they had come off while we were still on the hill, the wheelchair would have gotten away from Will and I would have had a bad crash on the asphalt, grass, and rocks at the bottom of the hill. Yikes.

The wheelchair handle grips are not something that is covered by warranty, unfortunately. A TiLite representative sent a bottle of contact cement to me to use to re-glue the handle grips to my wheelchair. In the future I will be extremely careful when being pushed down hills.

Overall I have been very pleased with this new TiLite wheelchair. It is high quality and comfortable. It is style, comfort, fun, and function all in one great wheelchair.

Many of you probably aren't interested in all of these wheelchair details, but I hope this is helpful to those of you who are considering purchasing a wheelchair. If you have any questions, please feel free to ask away in the comments or send me an email at RachelLundy@cranberryteatime.com.

Monday, July 28, 2014

Borrowing Spoons and Building Forts

If you knew me back in my healthier days, you probably remember that I like to have fun. I really like to play! It is quite a strange thing to now be stuck in a body that doesn't allow for much activity. There is a whole side to me that my children rarely get to see because I am too tired for much play. It takes most of my energy just to make it through the necessary daily tasks, but every once in a while I play anyway. I go into spoon debt, borrowing spoons from the next day to invest in the present. That is what I did this weekend.

On Saturday William and Adelaide built a fort in the middle of our living room using three blankets, two chairs, and a card table. They excitedly brought me out to show me their work and invite me into their fort. I went about halfway inside and really had fun being in a fort again. Then the big kid in me couldn't help but look around and see all of the blankets, furniture, and space still available. I went to work.



The fort grew bigger and bigger! William and Adelaide were quite surprised that their mom knew about building forts and having fun with such things. I know I have helped them to build forts before, but I suppose it has been so long that they don't remember. There have been too many days full of migraines lately for them to remember much else.



The forts I have built with William and Adelaide in the past have not been this big. I told them that this was the deluxe model! When the fort was completed, William said to me, "You are a super hero!" Adelaide said, "You are the best mom ever. And I'm never wrong about these things."



It was a very fun 15 minutes of fort building for me and an afternoon of fun play for William and Adelaide. Fort building wore me out, so I counted it as my exercise for the day!

What did you do over the weekend?


P.S. I blog as energy permits, which I know makes it hard for my readers to know when to check the blog for new content. If you don’t want to miss a post, you can subscribe to Cranberry Tea Time via email. You email address is kept confidential and will never be shared. If you are interested, you can subscribe here.

Friday, July 25, 2014

Five Minute Friday: Finish

Today I am joining in Five Minute Friday with Lisa-Jo Baker and more than a hundred other bloggers. We write for just five minutes without worrying about making everything perfect. We write for practice. We write for the joy of writing. We write to share our words with one another, to encourage one another in life and in writing. Today the writing prompt is "finish."


Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. Hebrews 12:1-3 

Physically I cannot run anymore. My body is too tired and weak. But spiritually I am running in a race, and dear Christian friend, you are too! Let us run this race well. Let us finish well. “Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it” (1Corinthians 9:24).

Running the great race of faith can be wearying. How do we combat the weariness? How do we avoid becoming fainthearted and instead persevere? I love the encouragement found in Hebrews 12:3 which says, “Consider him who endured from sinners such hostility against Himself so that you may not grow weary or fainthearted.” That is how we combat the weariness. We consider Him; we look to Jesus. We follow His example and take courage. Jesus knows what it is like to suffer. He suffered on the cross on our behalf, and He suffered more than any of us ever will. Consider Him. Keep your eyes on Him, and rest in His grace.

Run hard, friend! Keep your eyes on Jesus. Let us fight the good fight and finish the race.

"I have fought the good fight, I have finished the race, I have kept the faith. Henceforth there is laid up for me the crown of righteousness, which the Lord, the righteous judge, will award to me on that Day, and not only to me but also to all who have loved his appearing." 2 Timothy 4:7-8

Photo Credit: Olga Caprotti

Five Minute Friday
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