Chronically Confusing

If you ever asked me how I am feeling then you probably experienced one of the strangest and most confusing conversations of your life. You see the whole time my mind is conflicted with what to say. On one hand I want to be honest and tell you how bad I truly feel and on the other hand I want you to see the hope I have despite Lyme Disease. Even though this setback has lasted three years I am still trying to learn how to be an advocate for others with chronic illness. And I see honesty as one of the most important aspects of advocacy.

In talking to other friends with chronic illness this seems to be a trend. It's hard to know what to say. The symptoms I deal with on a good day would probably keep you home from work. And I don't want to make you uncomfortable or feel bad for me. I'm pretty comfortable with being sick. In fact I know how to be sick far better than I know how to be well! So if you ask, I'll probably say something like "I'm doing okay." Okay to me is normal but if I feel awful I'll probably tell you. I have an honesty problem!

When someone reads my blog or has a conversation with me, I want them to see the ups and downs of chronic illness. Good days are hard to come by but they happen. And when they do I am thrilled because not only am I having fun but I know that one day every day could feel like that. In the future, I shouldn't have to worry so much about my health and that is an exciting thought! Will the illness still be there? Most likely but I will be mostly back to my "normal" self. I will have to take very good care of myself to keep the illness at bay but I won't have to think of Lyme Disease every second of every day!

A Prayer

This isn't what we expected,

But it's essential to your plan.

Our life was turned upside down,

But you have carried us.

The valley is deep,

But your love is deeper.

When we can't go on,

You give us hope. 

It's been three years,

As you already know.

We wish to move on,

But you are the author.

One day we will look back in awe,

At the story you wrote for us.

In the here and now,

Give us the strength to keep fighting.

Yesterday was our third anniversary. It has been a crazy adventure. Despite my very poor health, we are so happy to be married. The Lyme and RSD flare began the day after our wedding. My health started declining rapidly and it changed all of our plans. But I truly believe it has been for the better. So many wonderful things have come out of this trial. Life is a learning process and trials are an incredible learning and life changing experience. There has been a lot of heartache but there have also been many moments of joy and awe in God's plan for our life. 

Thank you for walking with us on this journey. We are so grateful for your prayers and encouragement. The picture above was taken a few days ago. I may look healthy on the outside but honestly, I am surprised that I even made it out of bed that day. Thankful for the strength that God gives us each day to keep fighting this terrible disease.

Refining

On very bad pain days I will generally mutter the words, “My body hates me today.” Shortly after saying it my thoughts will quickly spiral out of control. I start thinking of all the things I can’t do and all the ways that my body has failed me. So, I started praying recently that God would help me to understand how to love myself when my body hates me. And now I am realizing that loving myself comes from realizing that those moments are refining moments. My body may be falling apart but my heart and soul are being transformed.

Psalm 66:8-10 has become an encouragement to me.

"Bless our God, O peoples;
let the sound of his praise be heard,
who has kept our soul among the living
and has not let our feet slip.
For you, O God, have tested us;
you have tried us as silver is tried.
You brought us into the net;
you laid a crushing burden on our backs;
you let men ride over our heads;
we went through fire and through water;
yet you have brought us out to a place of abundance."

I am losing function in so many ways and my body doesn't work how I would like it to. But I am beginning to learn that even while I am losing some things, I am gaining other even greater things. God is refining me and bringing me to a place of abundance.

Now when I am tempted to get angry when my body causes pain, I will work on reminding myself that the pain is allowing even greater things to happen. What may feel like punishment is in fact a blessing in disguise. I would not be where I am today without the pain refining me. So, I am going to work on loving myself and loving where God has me even when my body appears to hate me!

The Chain

I found this poem today that I wrote back in 2009. At the time I was just beginning my journey with Lyme. 

This week has been a challenging one and I have felt blindsided by a lot of things that relate to my health. It is so easy to let anxiety and anger take over. I just want to be better and it often feels like two steps forward and one step back. But I am grateful that God can use anything, even words that I wrote a few years ago to encourage me to keep fighting.

The Chain

The chain wrapped ‘round my ankle once again,

I could feel the devil pulling me in,

Encouraging vice and falsity,

And telling me things that could never be.

I was fed the lies and believed each one.

The lies rolled off my tongue.

I told myself I could never be loved,

Not after what I had done.

The chain breaks loose,

I climbed out of the abyss,

I see the light once more,

But the light is brighter than before.

I see the truth I hear Him now,

And see the devil’s furrowed brow.

The joy I have shall not leave,

To Christ alone will I cleave.

But the joy is blinding to the enemy,

My joy is all he can see.

So the chain entwines my ankle once more,

But the chain is not the same as before.

This time I must suffer for the joy I bear,

And the chain tempts me to despair,

I am falling once more into the pit,

This the Lord cannot permit.

His hand extends into the pit,

To Him alone the chains submit.

The chains fall into darkness,

Falling further into the abyss.

Harm was the devil’s plan,

But in me my Father’s work began.

The struggles I face are for His glory,

And the chains are a mere memory.

Living Life Together

Spending time in a wheelchair and on crutches has opened my eyes to help others in similar predicaments. Sometimes it is hard to help people who are struggling because you don't want to hurt their feelings but I believe if you help with the right heart they will be blessed. Even if they act like they don't want the help it is always good for people to know that someone cares.

Shawn and I saw a man the other day sitting in a wheelchair in the rain trying to get into a building far away. Shawn quickly ran to grab an umbrella and asked me to push him. It broke our hearts to see that people had passed him and didn't offer to help. I went up and asked if he wanted me to push him and I could see he was grateful to know someone cared. But I also knew what it is like to be in that chair and wish that you could be independent. It is so hard to accept help but sometimes you need to.

Do you know someone who is struggling? Perhaps they are like me living with a chronic illness or maybe they are working three jobs to provide for their family. I would challenge you to pray that God will reveal a way for you to help them. Can you send them a meal, pick up their kids from school, take them to a doctor appointment, or pick up groceries for them? I remember when my R.S.D. first started someone offered to do all of my Mom's ironing. What a blessing that was. It was a reminder that we weren't alone in fighting that health battle.

In the past two years many people offered to help but most of the time we were too exhausted to even let them know how they could help us. But each offer was such an encouragement. It was so helpful when someone found a way to help and just did it without asking. For example saying they would like to bring us dinner that week and what day would be good for us. Not having to make as many decisions was relieving.What a beautiful thing it is when we live life together. When we can cry together, laugh together, and share each other's burdens.

We are not meant to live life alone. Don't shut yourself in and try to live life by yourself. And if you are watching your friend struggle be the kind of friend who reaches into the darkness and says I'll walk through this with you. The movie Frozen reminded me how easy it is to live in isolation like Elsa. It is easier to hide than it is to share in each other's lives. But we need each other. We need words of wisdom, words of kindness, and sometimes we need to be told if we're making mistakes. Words have the ability to change your life. The change can be positive or negative that is up to you. Sometimes kindness needs no words. Even a friendly smile can make a difference in someone's day.

I want to be more intentional about living life together. It is so easy for me to stay home by myself but I need to reach out to others. And I need to be intentional about treating others as I wish to be treated. We live in a beautiful world and it would be a pity if we didn't share in that beauty together.

Giving Thanks

Yesterday was the first day I felt awful in a while. Honestly I am not sure how I made it out of bed much less to church. In the midst of feeling positively horrible, two people encouraged me through simple words and actions. A friend who has been faithfully praying for me for two years came up to give me my Sunday hug. She asked how I was and I told her I wasn't feeling good. She kindly told me, "I can see it in your eyes." and then prayed for me right then and there.

I can't tell you how much her words meant to me. Usually someone would respond with, "Well you look great." I know those words are meant with the kindest intentions but usually I walk away feeling like I need to prove how poorly I feel. But of course that is just my pride getting in the way. Hearing that she could see my pain gave me a feeling of peace. She saw the pain and then she prayed for me. My body may not have felt any better but her words were a balm to my soul.

After church we went over to a friend's house. I wasn't feeling up to it but I knew I needed the encouragement that comes from fellowship with others. As soon as my Auntie heard I didn't feel good she went over to the couch and made sure I had a place to rest after we ate lunch. She even put a stool right beside the couch so I could put my tea on it. I so appreciated the time she took to do that. Her thoughtfulness helped give me the rest I desperately needed. 

Sometimes it is the simplest things that touch your heart. I am so thankful that in the midst of pain God can bring joy. 

Happy Birthday Nana!

Today (October 8th) would have been Nana's 85th birthday. Not a day goes by that I don't think of her. I wanted to celebrate her birthday by sharing ten things she taught me.

1. Treasure family heirlooms and share the stories that go with them.

2. It is better to arrive ten minutes early or right on time...never late.

3. Save your five dollar bills and at the end of the year buy something special.

4. If you see a need and can do something about it. Do it. 

5. Never stop reading.

6. Always have a secret stash of candy

7. If you really want something, save up your money. I remember the story of her saving up to buy a watch when she got her first job. She was so proud when she finally got it. 

8.  Don't go into debt.

9. Never stop going out with the girls.

10. And of course she always told me to "be good.". And for me that means trying to glorify God in all I do. 

Happy Birthday Nana! Love you.