Horses, Zebras, and Unicorns

 

I have a little story to tell you today. It is from nearly 30 years ago when I was new to life with dysautonomia. It’s a story I have told very few people, and I recently decided that it needs to have a place on my blog. 

I was diagnosed with dysautonomia as a teenager in 1996. My cardiologist told me that doctors are taught in medical school to expect horses, not zebras. You may be familiar with that analogy. It says, "If you hear hoofbeats, expect horses, not zebras." Doctors look for the most obvious answers and diagnoses first because those are most likely to be accurate. But some patients are actually "zebras." They are outside of what is initially expected, and their conditions are more difficult to diagnose.

However, my doctor told me that I didn't fit into either category. I wasn't a horse or a zebra. I certainly didn’t fit into what was expected for horses, but my body also wasn’t responding well to the treatment for zebras. She said that I was some sort of shade of gray in between, and, unfortunately, there wasn’t a clear course of action for treatment.

My mom relayed this to a friend, and the friend immediately replied, "Oh! She's a unicorn!"

And I kind of loved that. It sounded unique and pretty. Not messy and blah like a shade of gray. Not a fearful unknown, but something with purpose and beauty.

I still like it today. It reminds me that there is beauty in this chronic illness life. God created my body just the way it is, genetic conditions and all. He knit me together in my mother’s womb, and I am fearfully and wonderfully made (Psalm 139:13-14). My body is known to God, and He holds it together (Colossians 1:17). I praise Him for this beautiful life and this “unicorn” body that He has given me. And I thank Him that one day I will receive a resurrection body!

If you live with a chronic illness, and you are tired of being a horse, a zebra, or a fuzzy shade of gray, then maybe it would help to think of yourself as a unicorn! Let it remind you to take delight in the God who created you.

Photo by Kaylee Stepkoski on Unsplash

Diamonds Conference and Study Guide

The Diamonds 2021 Conference starts this weekend! Have you signed up to attend? I would love to see you there! The conference starts on Friday at 11 am EST. You can view a full conference schedule on the conference webpage. 

What is Diamonds 2021? Diamonds 2021 is a free online conference for chronically ill Christians. 

When is Diamonds 2021? January 22-24, 2021

Who is speaking at Diamonds 2021? Over twenty people who are affected by chronic illness in various ways.

What does Diamonds 2021 cost? Nothing! The conference is free during the conference weekend. If you wish to view the conference after the 24th, you may purchase an all-access pass for lifetime access to the conference videos!

Where is Diamonds 2021? 100% online. You can register for free at this link.

I am happy to say that the study guide is now available on Amazon! The Kindle copy is FREE! Or if you prefer to have a physical copy, you may purchase a paperback study guide for $5.99.

Chronic illness is messy, and so often we let it become who we are. But illness cannot steal either your purpose or identity. Diamonds 2021 is an online conference for chronically ill Christians. The goal of the conference is to encourage all those facing invisible battles.

You aren’t alone — far from it.

This year, twenty authors, bloggers, and ministry leaders who battle chronic illnesses themselves are joining together to offer hope and insight as you navigate relationships in the midst of long-term illness. Hear from people like Susie Larson, Chris Simning, Kara Swanson, Mary Frey, and many others about topics like:

• Navigating Grief and Chronic Illness
• Marriage with a Chronic Illness
• How to Create Your Unique Support Community
• How to Serve God When You’re Chronically Ill
• And much more!

This study guide will help you make the most out of the Diamonds 2021 conference and remember what you learned far past the end of the conference.

I hope you will be able to join us this weekend! If you live with a chronic illness, or are a caregiver for someone with a chronic illness, this could be a very encouraging and helpful conference for you. You are not alone in the struggles you face. And this weekend we are coming together to encourage and pray for one another. See you there!

When Hope Is Scarce

I am pleased to welcome Bethany Rose to Cranberry Tea Time today. Bethany is a fellow Minnesotan, blogger, and spoonie. She has a lovely letter today for those of you who also live with chronic illnesses. In case you aren't familiar with the term "spoonie," those who are in the chronic illness community often refer to each other as "spoonies." It is a name that comes from Christine Miserandino's helpful story called, "The Spoon Theory."

Bethany will be speaking at the Diamonds 2020 conference this weekend. If you have a chronic illness, you will want to check this out! It is online, and it is free! Details can be found at the end of the post.

Photo by Guillaume Galtier on Unsplash

Dear spoonie,

Does your pain overwhelm you? Do the days seem endless? Do you wonder if you will ever find a way out? Is hope scarce?

Hope.

What a strange word, especially for those of us who wonder if the pain will ever ease.

A sweet girl told me the other day that during the worst days of her illness friends and acquaintances would frequently tell her, “I’m so sorry-I hope you feel better soon.”

The problem with telling us to “feel better soon” is that we both know it’s insincere. It often feels as if those who say this that don’t really care whether we feel better soon or not. That hurts. And as chronic illness warriors, we become finely attuned to the meaning behind common phrases like these.

With chronic illness, healing isn’t certain, and it probably won’t happen in the near future. It feels so empty when we hear, “I hope you feel better soon.”

Hope.

It’s so easy to lose hope when your day-to-day existence is filled with pain or exhaustion.

And it’s not just healing that we lose hope in. It’s also easy to lose hope in the goodness of God, and start to believe that life is just a series of tragedies.

Dear one, what can you do when you lose hope?

Throughout my illness, I have lost hope many times. And I have learned something which transformed the way I think about hopelessness.

When we are in a dark place, the solution is not to notice the darkness, to calculate how many more hours we must exist until dawn sprinkles sunshine on our faces again. Instead, when we are surrounded by darkness, we look up. For the night sky is peppered with stars.

I remember a dear friend messaging me, asking me, “When will this feeling end?”

I told her, “It will take time, but you will come out.

Take it one breath at a time.

Pause, and look at the night sky. It is vast, and it is wild, and it is not joyful. It has seen a thousand wrongs in the same moment as it saw a thousand rights. Look out your window. That ancient sky? Somewhere behind it is a Maker who will one day rip the sky apart to come and right every wrong.

You’re not alone.”

No matter what your illness is, God has not abandoned you. He will one day right the wrongs of this broken world. And if you simply look around, look up, into the sky, you will find small reminders of His enduring love.

Yet you wonder-how can I? My symptoms prevent me. Yes friend, sometimes our symptoms make finding reminders of God’s love harder. But that which is harder won is the more precious.

Perhaps you are a spoonie with light sensitivity. You can’t watch the sunrise, but you can close your eyes and go out into a garden or park. Inhale the scents. It’s winter now where I live in Minnesota, cold, frozen, lonely. You may think that winter doesn’t have a scent, but your nose will change your mind. Breathe deeply. What do you smell?

The first thing I notice in the winter air is the crispness. Then I smell underneath it the everlasting scent of the earth, quiet and strong, despite being stuck in winter’s icy clasp. I smell the earth, and I remember that God will bring spring again.

Dear spoonie, if we only hope for healing, we miss all the beauty God has given to us to relieve the bitter cold of winter. Yet if we choose to look up, we can find the little blessings which make a hard season of life bearable.

For we do not only hope for the relieving of our pain. Our primary source of hope is God.

“We put our hope in the Lord.
    He is our help and our shield.
In him our hearts rejoice,
    for we trust in his holy name.
Let your unfailing love surround us, Lord,
    for our hope is in you alone.”
Psalm 33:20-22

He will not disappoint us. He may not take away our pain, but He will help us to bear it. And when we begin to doubt that He really is here with us, if we only look around, we will see a thousand evidences that His love for us is still as strong as it was the day Jesus bore both our sins and our sorrows on the Cross.

And though our pain seems to last forever, soon, it will pass away.

So dear spoonie, when we begin to lose hope let us look to God. Let us be in awe of Him. Let us find the little blessings He gives us each day. But most of all, let us cling fast to the knowledge that He is guarding us. He is keeping us. He is with us!

Dear spoonie, when hope is scarce, look up.

“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials.” 1 Peter 1:3-6

Bethany’s name means “bright city on a hill.” This is her mission in life, to illuminate the beautiful things and shine God’s light where there was darkness. Bethany leads The Wilting Rose Project, a ministry of encouragement and truth for young women who feel their struggles make them worthless. She writes fairytales heavily inspired by her love of the forest, where she spends many of her mornings soaking in the uniquely Minnesotan beauty. Her blog includes more personal documentation of her battle the last few years with Lyme disease and Toxic Mold illness and her journey of healing.

What is Diamonds 2020? Diamonds 2020 is a free online conference for chronically ill Christians.

When is Diamonds 2020? January 23rd-25th, 2020

Who is speaking at Diamonds 2020? 16 awesome chronically ill warriors.

What does Diamonds 2020 cost? Nothing!

Where is Diamonds 2020? You can register for free at this link.

A Day in the Life

Many of you have told me that my "day in the life" blog posts are your favorite. It has been nearly four years since I wrote a day in the life post, so I decided it was time to do a new one. What follows isn't a "bad day" or a "good day." On a bad day I would primarily be confined to bed. On a good day you would be surprised at how much I can do. But on an average day, this is what life is like right now. 

Life is about to change a lot in March when we welcome our new baby. I am hoping I can write another "day in the life" post sometime in the year after Stafford is here. Daily life will be quite different for me then!

A Day in the Life

Monday, December 11, 2017

6:30 am - Will is getting the children up and ready for school. I am very sleepy, but wide awake. I am also hungry, so I eat the fruit that is sitting next to my bed for breakfast.

7:00 - I am not able to fall back asleep, so I read for a while.

9:40 - I feel best when I can sleep until 10:00 or 11:00 in the morning, but today sleep isn’t coming. I decide to get up and get the coffee that is waiting for me in the bathroom. Will always puts the coffee pot and my coffee cup on the bathroom counter for me before he goes to work so that I don’t have to walk all the way out to the kitchen to get it.

I go back to bed with my coffee, put my laptop on the bed, and turn it on. I check email and catch up on blog reading. I take my morning medications and vitamins, eat the rest of my breakfast, and drink my coffee. Now that I am awake enough, I also have my morning devotion and Bible reading time.

10:30 - I'm too sleepy to do anything anymore. I put my head under the pillow and pray until I fall asleep.

11:30 - I begin to wake up after sleeping for almost an hour, but then I keep falling back asleep.

12:20 pm - I open the curtain and try to convince my body to wake up. Will is going to be home for lunch anytime now, and I have things I need to do this afternoon. I need my brain and body to wake up!

12:25 - Will comes home for his lunch break. We talk for a few minutes, and then he heads out to the kitchen to make lunch. When lunch is ready, he brings it into the bedroom where I am still resting. I eat while lying down in bed, and Will sits on the bed and joins me for lunch.

1:25 - Will goes back to work. I open up my laptop and work on finishing a guest post while trying to ignore the migraine aura in the center of my vision.

1:50 - I put aside the guest post for now. I want to wait another hour and then read it again to see if it needs any final edits. The migraine aura is fading, and I am getting a headache now. I decide to take some Tylenol (since it is all I'm allowed during pregnancy) and hope this will remain a mild migraine.

I only have an hour and a half before the kids get home from school. I need to get some paperwork done while the house is still quiet. I get up and get dressed for the day. I struggle to put my compression garments on. The compression helps to prevent my blood from pooling while sitting and standing. They are very helpful for me, but putting them on is exhausting! By the time I have tugged everything on, my heart is racing, and I am breathing hard.

I take some midodrine to keep my blood pressure up while I am out of bed. I put my laptop, planner, and water bottle on Cordell, and head out to the office. On the way to the office I put my breakfast dishes in the dishwasher. I turn on some music.

2:20 - I realize that I never took Tylenol, so I take it now. I make some black tea and open packages that were delivered. 

2:35 - Music is too much for me today, so I turn it off. I should have known not to turn on music while also dealing with a mild migraine. I settle in to my office recliner and desk.

I’m still struggling to finish my blog post, so instead I write an email to my editor to ask for an extension on my guest post deadline. (Later I receive a very kind reply, and my deadline is graciously extended.)

My body is so tired. I briefly wonder how all of this is going to work in 3 months with a baby. I decide I shouldn't worry about that, and I focus on today's tasks without borrowing trouble from tomorrow.

2:50 - I try on my new ACE knee brace. Pregnancy and Ehlers-Danlos Syndrome don't always mix well, so my joints have been looser and more painful than is normal for me. I pull the brace on my sore knee and lie back down in my recliner to rest until the kids come home.

3:25 - William and Adelaide come home from school. We talk and get some snacks. Then we get ready for friends to come over and visit.

3:40 - I look at my planner and realize that I didn't make the phone call I needed to make. I push it off until tomorrow. I have yet to cross anything off of my To Do list for the day, a fact I find a little discouraging.

3:45 - I look at Adelaide's take home folder, and I help her with some homework. The only homework she has today is reading, and I am thankful for that. My brain is not up for math today, even 2nd grade math.

3:55 - Friends come over. I lie down on the sofa and visit with my friend while our daughters go off to play.

5:00 - We say goodbye to our friends. Adelaide and I finish up the reading homework.

5:15 - Will comes home. We share a hug, and we talk about our days. I tell him that I didn’t accomplish anything on my To Do list today. He reminds me that I had a friend over to visit, and that is accomplishing something. I’m so thankful for his encouragement, kindness, and understanding.

I get some fruit for my breakfast tomorrow morning, and I put it by my bed. I help Adelaide set out clothes for school tomorrow. Then I shower and get ready for bed.

6:20 - I turn on my white noise machine to drown out the conversation and other noises in the house, and I lie down in bed. I call Will to let him know I am in bed and ready for supper.

6:30 - Will brings supper to me. I eat, take my supper vitamins and supplements, rest, and watch a television show.

6:40 - I pause the show to grab my crocheting bag. I have to get out of bed to reach it. As I stand I notice that my legs are especially weak and worn out, but I'm able to get my bag and get safely back into bed. I'm hoping for enough strength in my arms to do some work on a baby blanket for Stafford.

7:20 - I take a break from crochet and the tv show. I post a couple of pictures on Instagram. William comes in to tell me good night, and we talk.

7:35 - William leaves, and Adelaide comes in to talk for a bit.

7:40 - I go back to my show and crocheting.

7:50 - I pause my show again as Adelaide comes back in to say good night. Then I text a friend and Vox two other friends.

Will puts the children to bed. Then he does law school homework.

8:15 - I go to the kitchen for a few minutes to make some rooibus tea and get a snack. Hopefully this will keep me from waking up hungry at 6:30 tomorrow morning like I did today!

I text and Vox some more with friends. Technology is so helpful! I am grateful for a phone and the ability to keep in touch with friends from far away.

8:45 - I go back to crocheting and watching tv. I stop crocheting every few minutes to rest my arms.

10:00 - I check my email, read a couple of blog posts, do some Amazon shopping, and then shut down my laptop.

10:15 - Will is done with law school homework for tonight. We talk a little and get ready for bed. Will fills up my water bottles and gets an ice pack for my feet for the night.

10:50 - We pray together and say good night. Will can fall asleep right away, but it takes me a while. I take my night time medications and then scroll through Facebook and Instagram on my phone for a few minutes. I pull out the book Happiness by Randy Alcorn and read for a while.

12:00 am - Happiness is too interesting, and it is keeping me awake! I put it away and pull out an audio book instead. I soon fall asleep.

Friendship through the Hard Days

Gloria and I met for the first time on a hot summer afternoon several years ago when I stepped outside my apartment to water my flowers. Gloria and her family were new to the community, and when she saw me outside she came over to introduce herself. We chatted about life and our families. We only had a few minutes to visit before I needed to go inside to rest, but a friendship had begun. Little did I know how incredible Gloria’s friendship would be in months to come.

We were only able to visit together one or two more times before my health took a severe turn for the worse. My chronic illness had slowly been growing worse that year, but by the time fall came, I was so weak and fatigued that I was confined to bed for 22 hours or more each day.

My husband had already been taking care of all of the shopping, cooking, and cleaning in our home. Suddenly I was no longer able to help out even a little, and the burden of keeping the household running fell to him completely. He had two young children and a primarily bed-ridden wife who needed his daily care, and he needed to manage all of this while also attending seminary. We were overwhelmed, and we were very grateful for our church and friends who stepped in to relieve some of our burden.

Even though we were new friends, Gloria came by to visit me when she heard I was so ill. Then she went above and beyond anything I ever expected from a brand new friend. She offered to help us by bringing a meal to our family every Wednesday evening, by taking our son to Awana on Sunday evenings, and by taking care of our two young children each Thursday afternoon.

I never expected a new friend to be so committed to a friendship with me! Gloria was intentional in loving my family and me well. After a few weeks I let her know that I was doing a little better and that she didn’t have to keep bringing meals each week. But she knew that it would be helpful for us, and she insisted on continuing to help. She brought a meal each week until we moved away nine months later. And she didn’t just bring a meal for one night; there were always leftovers that lasted for two more meals! It was a huge gift and a big help to my family.

Gloria also insisted on continuing to care for our children on Thursday afternoons. She was a busy mom with three children of her own, and a baby on the way, but she gladly gave of herself to help our family in our time of need. Those Thursday afternoons gave my husband much-needed time to study, and they gave me much-needed time to rest in a quiet apartment.

Gloria loved me and served me in a time when I had nothing to give in return except for my gratitude. I will always be thankful for her service and pursuit of friendship during my very hard days and months. Now that we live in different states, we don’t get to see each other very often, but we still keep in touch. I pray for her regularly, and I thank the Lord for the blessing of this kind, generous, and faithful friend.

Do you have a friend who has served you in a sacrificial way? How have you served a friend self-sacrificially?

This article originally appeared on The Irresistible Church.
Photo by Anete Lūsiņa.

Dysautonomia Awareness Month

October is Dysautonomia Awareness Month! I am wearing this fun bracelet from DINET that says, "Drink, SALT, & Be Merry!" DINET was giving these away recently to help promote Dysautonomia Awareness Month. Adelaide and I each received one, and we are having fun wearing them!

Many dysautonomia patients are advised to drink a lot of water and eat a lot of salt, so this bracelet is a fun reminder of something most of us have to do daily. Those of us with dysautonomia often have low blood pressure and/or a fast heart rate. The purpose of fluid and salt intake is to increase blood volume, raise blood pressure, and lower heart rate. This helps to prevent fainting and helps us to feel a little better overall.

What is POTS?
(If you are reading this in an email, please click over to the blog to see the video.)

Dysautonomia International created this video about POTS, a type of dysautonomia. If you want to know what POTS is, this video does a great job explaining it clearly and concisely.

POTS is one of the types of dysautonomia that I have. I was diagnosed with it at the age of 15. I am 35 now, and though I have received other diagnoses as well over the years, POTS is still a big part of what I deal with on a daily basis.

Mayo Clinic estimates that 1 in every 100 teenagers has POTS. POTS is very common! The severity of POTS can vary greatly from one person to another. Some are mildly affected and can continue to work or go to school, though it may be difficult. Others are very disabled by POTS. Some patients may be disabled for a time, but are later able to recover partially or fully.

Do you have POTS or another type of dysautonomia? What is life like for you? Feel free to leave a comment and share your experience. Let's raise dysautonomia awareness!

Five Minute Friday: Collect

It is Five Minute Friday! We gather to write for just five minutes on the same writing prompt, and then we link up over at Kate's blog. This week the word is "collect."

For the past twelve years I have had a slowly growing collection of medical supplies and equipment. Some pieces I have added to my collection with great sadness that I needed them. Sometimes I have had a sense of relief because of the help that a particular medical device gave. And other times I have been excited because of the new things I could do with the assistance of medical equipment.

This week I added a seat cane to my collection, and I was so excited when it came! This seat cane will enable me to sit outside for a few minutes with our puppy, Frodo, as we wait for William and Adelaide to come home from school. This seat cane may even allow me to go on very short walks with Frodo. I have tried going for walks with a walker, but it is too hard to get the walker up and down our front steps. And then it is exhausting to try and push the walker on uneven sidewalks. Perhaps with this seat cane I will be able to walk 25 or 50 yards without my arms becoming so worn out from trying to push a walker.

Attempting to walk without bringing a seat along is not a good idea, so I recently began looking for a lighter weight option than a walker. This seat cane with a sling seat looked like the perfect item for me! It is just 2 and a half pounds, and it has a comfortable, sturdy seat. It is exciting to have this new piece of medical equipment.

I like this little cane. I think I’ll call her Myrtle.

P.S. It is Invisible Illness Awareness Week! Learn more here!

Invisible Illness Awareness Week

Photo by Ellie Kiser

I was 24 when it happened for the first time. I sat beside my husband in our church that met in a little log building in rural Alaska. The congregation stood to sing, but I remained seated. It was awkward to be the only one sitting, especially when I looked so healthy. My body appeared strong, but inside it was weak.

My health had been slowly deteriorating for several years, and my disability was invisible. Many in the church probably didn’t even know that I had an invisible illness. They could not see that each week it was becoming harder for me to attend church. No one could see that standing made my blood pressure drop too low. No one could see my heart racing to keep my blood circulating so that I didn’t faint. No one could see the energy draining from my muscles. But I could feel it, and I knew that if I wanted to make it through a whole church service, I could no longer stand while singing hymns.

Photo by Ellie Kiser

My church was very kind and accepting of my new limitations. They allowed me to remain seated without shame, and they brought meals to show their love and care. We have moved many times since then, but I will always be grateful for our little church in Alaska.

My family lives in Minnesota now, and I am grateful to have another loving and accepting church. My invisible illness has grown worse over the years, but my church accepts me just as I am. They even keep a recliner at the church for my personal use! I can no longer sit up through an entire church service, so lying down in a recliner enables me to attend a service occasionally.

There are many members in our churches who are fighting invisible illnesses, and although we cannot see it, their struggle may be profound. Their illnesses may be disabling even if they appear to be able-bodied.

This week is Invisible Illness Awareness Week, an annual online awareness event sponsored by Rest Ministries. According to Rest Ministries, nearly 1 in 2 Americans live with some kind of chronic condition, and the majority of their symptoms are invisible. An individual may be dealing with pain, fatigue, nausea, dizziness, weakness, cognitive difficulties, or any number of other debilitating symptoms.

People with invisible illnesses need our support and encouragement. They face challenges each day that no one can see and that many do not understand. They may feel lonely, discouraged, or misunderstood. They may be struggling to keep up with simple tasks of daily living. They may be facing a disability while those around them are unaware.

If you have an invisible illness, it can be embarrassing to let others know about your struggle. But sometimes we need help and encouragement from others, and if we do not share with them what we are going through, they cannot offer their support. Let’s humble ourselves enough to let our churches know that we are living with an invisible illness.

When we learn that someone has an invisible illness, let’s be ready to offer them our encouragement and support. Let’s be understanding when they need to sit, leave church early, or cancel plans at the last minute. Let us accept them, limitations and all, and welcome them in our churches.

If you have an invisible illness, what is one of your most disabling symptoms?

What are some ways we can offer support and encouragement to those who are suffering from an invisible illness?

{This article was originally posted on The Irresistible Church blog.}

Persevering and Choosing Joy on the Hard Days

The past few weeks have been filled with a lot of hard days. A "good day" is when I am able to be out of bed for four or five hours, but even on the good days, I often struggle to move. My body feels like it is on its last drop of energy, and everything I do is a physical challenge. Sometimes I wonder how my muscles are even moving because they are so tired it feels like it shouldn't be possible.

My body is tired, and my mind is tired, but I want to persevere. I want to keep on keeping on when life is hard. I want to choose joy not just on the good days, but on the bad days too. Here are some things I have intentionally been doing lately as I seek to persevere and choose joy:

Reading through Job and Psalms. I am working on reading through the Bible this year, and it "just so happens" that I recently finished the book of Job and am now reading in Psalms. It has been perfect timing, and the words of Scripture have encouraged and strengthened my heart.

Praying daily. I often ask God to help me be "joyful in hope, patient in affliction, and faithful in prayer" (Romans 12:12).

Listening to music that encourages me to persevere. I have a playlist with some of my favorite songs that I like to listen to while resting in bed.

Putting on lotion that smells good. I have recently been wearing Peppermint Spice body butter on my hands. It smells like Christmas and the outdoors and happiness all rolled into one. And it was made by my friend, Dorina. I can't help but smile when I wear this!

Enjoying Dandelions. Wildflowers from my daughter are a sweet reminder to find love and beauty where there are weeds.

Sitting by the fire pit. This is homebound camping at its finest! I really miss camping, but being able to sit by a fire in my backyard was such a treat. It wore me out so much that after 2 hours I had to go inside and take a nap! But the picnic, fire, and time with my family was delightful.

Appreciating the extra time to crochet. After finishing my scarf, I made fingerless gloves with the leftover yarn. Now I am working on a baby sweater, bonnet, and booties to enter at the county fair this summer. If I wasn't struggling with brain fog I would have been spending a lot of my recent time writing instead. The brain fog has been a blessing because it has forced me to spend more time crocheting, which is something I love to do.


How about you? What are you struggling with currently? And how are you choosing joy and persevering? Let's share our ideas and encourage one another today!

Keep on keeping on, sweet friend! Or, as my friend Elizabeth often tells me, "KOKO!"

Top Ten Blog Posts of 2015

Hello Friends,

Thank you so much for visiting me here on Cranberry Tea Time this year. I appreciate all of you, whether you are new here or a long-time reader, whether you comment often or simply read quietly. Thank you for taking time out of your day to be here.

I was curious about the most-read posts from this year. I looked through my stats, and these are the ones that received the most attention this year. If you are new here, or if you missed a few blog posts this year, you might enjoy reading some of these.

Top Ten Blog Posts of 2015:

• Free Ebook: Chronic Illness and Friendship
• Five Minute Friday: When
• Free Ebook: Hope for the Hard Days
• The Year of Adventure
• The Amazing Story of a Simple Coin Purse
• Hold Me,Jesus
• Invisible Illness Awareness Week 2015
• They Just Showed Up
• Eight Reasons I Am Thankful for Dysautonomia
• Help Save Midodrine

Thanks again for being here. I look forward to chatting with you more in the new year. If you want to keep in touch, you can find me on Instagram, Twitter, Facebook, and Periscope. You can also subscribe to Cranberry Tea Time to receive blog posts through email.

Happy New Year! See you in 2016!

Blessings and joy,

Rachel

Dysautonomia Awareness Month

Photo Credit: DINET

October is Dysautonomia Awareness Month. On October 1, Niagara Falls was lit up in blue for dysautonomia awareness! It is exciting to see more attention given to this condition that is devastating for so many people. We have a long way to go, but it is good that awareness is spreading for dysautonomia.

Image Credit: Reflections of a Bear

Dysautonomia is an umbrella term used to describe the dysfunction of the autonomic nervous system. There are many different types of dysautonomia, and this infographic shows some of the illnesses that fall under the category of dysautonomia.

The autonomic nervous system controls everything in the body that you don't have to think about such as heart rate, blood pressure, circulation, temperature regulation, digestion, sensory perception, energy production, and more. When the autonomic nervous system does not function properly, these processes can become impaired.

One of the most common forms of dysautonomia is POTS. The Mayo Clinic estimates that 1 in every 100 teenagers has POTS. Though many people haven't heard of it, it is actually fairly common. "POTS might be the most common medical condition that no one has ever heard of."

Despite the fact that POTS is common, there is often a long delay between the onset of symptoms and the diagnosis of POTS. A recent survey showed that the average diagnostic delay is 5 years and 11 months. Before receiving an accurate diagnosis, 59% of patients are told that it is "all in their head." Even though POTS is common, 27% of patients had to visit 10 or more doctors before a correct diagnosis was made.

My POTS

I first developed obvious symptoms of POTS when I was 14 years old. I was diagnosed with Neurocardiogenic Syncope (NCS) when I was 15, and the POTS diagnosis came shortly after that. This was in the 1990s when it was very rare to receive an accurate dysautonomia diagnosis so quickly. I am grateful that I had parents who believed me when I said that I was sick, and who did not believe the doctor who said I was making it all up.

Over the years my health has gotten progressively worse. I do still fit the POTS category, but POTS no longer totally describes my dysautonomia. For this reason, my doctors typically say that I have "dysautonomia" as a diagnosis because that covers the broad variety of symptoms I have. Because of the severity of my illness, the progression of symptoms, and the lack of response to treatment, several of my doctors believe that I have a mitochondrial disease as a root cause for my dysautonomia.

When I saw Dr. Cohen several years ago, I asked him if he believed I had a mitochondrial disease, and he said, "Definitely. The question is: can we prove it?" We may never know why I have dysautonomia or why my condition has been progressively getting worse. We may never be able to prove that it is a mitochondrial disease. But, perhaps, with more awareness, research, and advances in testing, we might find an answer one day!

If you want to know more about how POTS and dysautonomia affect me, here are some blog posts that explain more:

• Fighting Against Gravity
• A Day in the Life
• Dysautonomia
• Frequently Asked Questions

For Further Information

If you want to learn more about POTS, here are a couple of good articles:

• POTS Overview
• Postural Orthostatic Tachycardia Syndrome

If you want to learn more about dysautonomia, I recommend visiting:

• www.dinet.org 
• www.dysautonomiainternational.org

Happy Dysautonomia Awareness Month!

Helping a Friend in Her Invisible Fight

Do you have a friend who lives with a chronic illness? Is someone you care about going through a daily invisible fight? It is easy to want to help a friend, but it can be hard to know how to help a friend who is facing a battle that you don’t understand. Here are a few ways that you can reach out to your friend and help her in the invisible fight.

Communicate with her. Let her know that she isn’t alone. Let her know that you see her and that you care. There are plenty of ways to communicate that will accommodate your friend’s limitations and needs. It might be helpful to ask your friend what methods of communication are best for her.

Here are some possible options for communication:

• Send text messages. These can be short to let her know that you are thinking of her, or if she is up for it, you could have a conversation through text messages.
• Send an email. Share about your life, and ask her about her life. Email can be an easy way for someone with a chronic illness to get to know a new friend or connect with a long-time friend.
• Connect with her on social media. Interact on Facebook and Instagram so that you can be a part of her life, even if it is only virtually.
• Read her blog, and leave comment or let her know that you are reading it.
• Send a card in the mail. Cards are extra-special because of the time required to handwrite and send a card. They are also special because they can be kept, held, and displayed for continued encouragement.
• Visit your friend. Spending time with a friend is time well spent. An in-person visit allows you to give your friend a hug, see how she is doing, and provide fellowship that she might not otherwise have.
• Call your friend on the phone. If you are unable to visit, it may be very encouraging to your friend to hear your voice over the phone.

Get to know her better. Ask her what her daily life is like so that you can understand her invisible fight. My friend, Stacey, has some good questions in this blog post that you can ask your friend. 

Pray for her. Pray that she would not grow weary and lose heart. Pray that the Lord would strengthen her spirit. Pray that she would be faithful to the Lord as she suffers physically. Pray that the Lord would provide for her needs. Pray that she will grow in godliness. Pray for encouragement and strength for her family.

Encourage her. Encourage her to persevere. Share a passage of Scripture that has encouraged you. Tell her what you have learned from her example. Tell her about the godly qualities you see being developed in her life. Encourage her through words, visits, gifts, and/or offering practical help. Let her know that you want to be her friend in the good days and the bad days.

Give her a special gift. This could be something to help her in the fight of faith, such as encouraging Christian music, Scripture verses written on a card, or a book written specifically for those who are suffering. A few books I recommend are:

• Beside Bethesda by Joni Eareckson Tada
• When God Weeps by Joni Eareckson Tada and Steve Estes
• 90 Days of God’s Goodness by Randy Alcorn
• Rose from Brier by Amy Carmichael
• The Hardest Peace by Kara Tippetts

A gift could also be something to bring comfort such as a throw blanket, a sweater, or flowers, or something to keep her occupied such as a Netflix subscription, a movie, or a simple craft kit.

Offer practical help. Sometimes your friend may need physical help in fighting her chronic illness. She may be physically unable to keep up with cleaning. She may need help getting to the doctor or picking up medications. She may need help preparing healthy food. She may need someone to take care of her children for a while so that she can get the rest her body needs.

It might not be helpful to give a general offer of help by saying, "Let me know if you need anything." Your friend might not know what you are comfortable doing, or able to do, so she might not know what to ask for. She also might not even be able to think of what would be helpful. Spend time with your friend so that you can see areas of need, and then offer to help in a specific way.

These are just a few ways that you can help a friend as she faces the invisible fight of chronic illness. If you want to read more about how you can help your friend, you may find my ebook, Chronic Illness and Friendship, to be beneficial. It is available for free as a PDF document.

If you wish to read more about coming alongside a friend affected by chronic illness or disability, these are three very good books on the topic:

• Just Show Up by Kara Tippetts and Jill Buteyn
• Beyond Casseroles by Lisa Copen
• Barrier Free Friendship by Joni Eareckson Tada and Steve Jensen

Thank you for caring about your friends who are ill and for loving them in the hard places of chronic illness. May the Lord bless you as you bless your friend through your caring and friendship!

Read more Invisible Fight blog posts here.

Photo Credit: black and white image from ErikSöderström.

Fight the Good Fight of Faith

It is Invisible Illness Week, but whether you have an invisible illness or not, if you know Jesus as your Savior, I have encouragement for you today from God’s Word.

We all face hard things in life. You may be fighting an invisible illness, or you may be struggling in some other area of life. No matter what you are going through, I encourage you to persevere in the fight of faith! Keep your eyes on Jesus and “pursue righteousness, godliness, faith, love, steadfastness, gentleness. Fight the good fight of the faith. Take hold of the eternal life to which you were called and about which you made the good confession in the presence of many witnesses” (1 Timothy 6:11b-12).

Sometimes the trials of life seem overwhelming. It is easy to look at our problems, or see the suffering around us, and feel like we can’t continue to persevere. But dear friend, with God’s strength, we can persevere! We need to keep our eyes on Jesus so that we do not grow weary in the fight.

I was recently encouraged by this quote from John Piper: “When you feel like you can’t take it anymore, look to Jesus, and take it a little more.”

Hebrews 12:1-3 always helps me to look to Jesus.

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.

Jesus endured more suffering than you or I ever will. We have Him as our example, and we have Him to give us strength in the hard days. We don’t have a Savior who is far-removed from suffering. No, we have a Savior who willingly entered into suffering on our behalf! He chose to enter into our world, and He took on the limitations of the human body. He became tired and hungry. He faced temptation. He was mocked and scorned. He suffered with us and for us. He came because we needed Him. He suffered the wrath of God on the cross so that we might never have to. He came to save us from our sins and to redeem us as His own!

Jesus has suffered so much for me. He has forgiven me of my sins, and He has promised me a home in Heaven! I will gladly endure hardship for Him. I will suffer through anything He calls me to suffer. When I feel overwhelmed in the fight of invisible illness or the fight of faith, I simply have to look to Jesus for strength to endure.

Oh, friend, look to Jesus. Keep on keeping on. May we be able to say, “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).

Your reward is coming! Look to Jesus, and fight the good fight. When you feel like you can’t take it anymore, look to Jesus, and take it a little more.

Read more Invisible Fight blog posts here!

Fighting Against Gravity

Yesterday I mentioned that my body does not counteract gravity very well. Today I would like to tell you a little about my fight against gravity.

In a healthy person, blood vessels constrict when the person sits or stands. This vasoconstriction counteracts gravity and keeps blood flowing back up to the heart, lungs, and brain. Because I have dysautonomia, my blood vessels do not constrict well when I am upright. This means the longer I am upright, the more blood I have pooling in the lower half of my body, which causes a lack of proper blood flow to my lungs, heart, and brain. 

I took some pictures to show you the blood pooling that happens every time I sit or stand.

These are my feet while resting on the sofa. This is their normal color.

These are my feet after standing for one minute. They are turning a slightly mottled purple color. 

These are my feet after standing for only five minutes. They are purple, itchy, and uncomfortable. Each of my ankles has increased in size by a 1/2 inch due to blood pooling. The longer I stand up, the worse the blood pooling becomes. That is a lot of blood that isn't making it back up to my heart, lungs, and brain! 

Obviously my body doesn't fight gravity very well on its own, so I have some other things that I use to aid my body in the fight against gravity. Before getting out of bed each day I take midodrine. This is a medication that causes blood vessels to constrict, thus helping to prevent blood pooling. I also wear 30-40 mmHG compression stockings to squeeze my feet and legs and help prevent blood pooling. In addition to that, I drink coffee in the morning (and usually the afternoon too!) to help raise my blood pressure. None of these things completely solve the problem of blood pooling, but they all help.

Walking and moving my legs also helps because the muscle contractions help to keep the blood circulating. I like to walk and move as much as I can, but my energy runs out quickly, so that isn't an option for very long. I often need to either be in a recliner or curled up on a couch. When the blood pooling gets bad enough, I just have to go back to bed. If I am not at home, then I have to lie down wherever I am. I have been on the floor at weddings, church services, Wal-Mart, in waiting rooms and airplanes, and plenty of other places!

Until I choose to lie down, my fight against gravity is invisible to others. When I wear socks, shoes, and long pants, no one can see the blood pooling, but I feel the effects of it. I feel the itchy, uncomfortable legs. I notice the light-headed feeling. I am aware of the lack of proper blood flow to my brain because it becomes hard for me to think clearly, make decisions, or carry on a conversation.

Fighting gravity is an invisible battle that I face every day. It is one small part of living with dysautonomia. Life in a body with dysautonomia is challenging, but it will make me appreciate my resurrection body all the more one day!

Defying Gravity - Idina Menzel

And now for some fun! I realized while writing this blog post that I should have included Defying Gravity on my Invisible Fight playlist on Monday. I'm going to add it right away. :) And I am going to keep fighting against gravity. I may not be able to defy it, but I will keep fighting it.

Bloggers are sharing their invisible fights for Invisible Illness Week.

Read more Invisible Fight blog posts here!

 October is Dysautonomia Awareness Month!

Learn more about dysautonomia at www.dinet.org.

My Invisible Fight

Each day with an invisible illness is a fight against my body. I fight to wake up. I fight to make my body move. I fight to get out of bed. I fight to spend time with my family. I fight to think, communicate, read, and write. Through it all, I fight for joy.

My invisible fight begins in the morning when I start waking up around 10:00 or 11:00 am. Every morning I wake up with a miserable, sick, and weak feeling in my body. It overwhelms me, and I start praying right away. I can’t think clearly when I first wake up, so my prayer is usually something very simple like, “Please help me, God. I don’t feel well. Please give me strength. I need you.” Sometimes I go back and forth between sleep and prayer for an hour. Waking up is not easy. It is a fight every morning.

After waking up, I fight through morning brain fog. I read blogs and check Facebook to help my mind wake up. When enough of the brain fog has cleared, I read and study my Bible. This brings me joy, and it helps me to keep life in a proper perspective. After reading my Bible, if I am able to think clearly enough, I like to correspond with friends, write a blog post, or read a good book. I keep resting in bed until the afternoon so that my spoons for the day are not used up too quickly.

Around 2:00 in the afternoon I fight my body to get out of bed. Being out of bed is always hard because my body does not counteract gravity very well (I will tell you more about that fight tomorrow). I walk around the house as much as I can in the afternoon, and this is my daily exercise. It helps me to maintain as much muscle tone as possible, but it depletes my energy levels quickly.

William and Adelaide come home from school at 3:25. They bring such joy to my life, and I fight for time with them. I like to sit with them on the sofa and hear about their day. We do homework together. Sometimes we eat a snack. On the really tired days I lie down on the sofa, and Adelaide and I watch a movie together.

Between 4:00 and 5:00 each day I feel my spoons slipping away. They are almost gone, and I fight to stay up until Will gets home from work. By 6:00 my body is almost ready to give up the fight for the day. I push myself a little longer and a little harder, but by 6:30 or 7:00 I am in bed for the night. My spoons are gone, and it is time crash out and rest up for the fight that is coming the next day. I usually get to spend some time with Will at night before we fall asleep, and this makes me happy. It is the perfect ending to the day!

Each day with dysautonomia is a fight to move and do as much as I can. I thank the Lord for my family and for the help they give to me, and I thank Him for the friends who encourage me in my invisible fight.

The Lord provides grace and strength and joy each day as I face life with an invisible chronic illness. I am grateful to Him for never leaving me alone in my invisible fight. 

Read more Invisible Fight blog posts here.