So you have Chronic Lyme Disease. Now what?

I was inspired to write more about Chronic Lyme Disease. Some of this may pertain to other chronic illnesses but for right now Lyme is my focus. I have a few more blog post ideas but I am also open to suggestions. Without further ado, ten things a newly diagnosed Lyme patient needs to know...

1. You are not alone

Some days you might feel like no one could possibly understand what you are going through. Trust me, I have been there. I now have a few "real life" friends with Lyme and have also met some great friends through Facebook support groups. I can't tell you how thankful I am to have met people who truly understand what I am going through.


2. The sooner you get treated the better.

Lyme is a vicious disease and has the ability to effect every part of your body. But the sooner you catch it the easier it is to get under control. Unfortunately for me I was undiagnosed for fourteen years. Which gave Lyme Disease the chance to mess with just about everything. This does not mean that I am without hope though! It will just take longer to get under control.


3. Unfortunately it's going to get harder before it gets better.

With every new treatment the Lyme will fight back. It can be brutal but it does get better. This reaction is called herxing.


4. It could be hard for friends and family to understand. 

Lyme is a mind boggling disease. The best advice I can give you is to try not to hide everything from your loved ones. When I got sick in 2011, I was very afraid to let others see me so ill. But the more I let them in, the more they could understand.

5. It's okay to ask for help. 

I had a very hard time with this as well. Asking for help felt like I was succumbing to Lyme. When in fact the more help I received the more energy I could put into fighting Lyme. Many people want to help, so let them. Living life together is a beautiful thing.


6. Doctors might not believe you.

Doctors are generally taught that Chronic Lyme does not exist. They believe that a few weeks of antibiotics will cure you but this is only true if you just contracted Lyme. In order to get the best treatment you will want to find a Lyme Literate Medical Doctor (LLMD).


7. Treatment can be expensive.

Many insurance companies do not cover treatment and everything adds up quickly. There are organizations that can help cover the cost if you can't afford it. Talk to your doctor about better pricing if you pay in cash. When you get a new prescription call around to several pharmacies to find the best price. Here is a good list on getting treatment with a limited budget.

8. You might change and that's okay!

I am a firm believer that trials like Lyme are a refining process. When bad things happen it's up to you to choose to look at the good instead of the bad. You would be surprised at the things you are thankful for like having the energy to do laundry! You can also be more sympathetic towards those who are struggling in life. I have learned life-long lessons through this horrible disease.


9. Be kind to yourself.

There are a lot of things that you may have trouble doing. Cleaning, cooking, socializing, etc. Know that your job right now is to beat the Lyme. If all you can do today is stay in bed, eat, and take your medication...that is okay!

10. Don't give up

Treating Lyme is a long and difficult process. You may feel like giving up, but please don't. There is light at the end of the tunnel. The progress you see may be slow but it all adds up! Keep fighting, you got this!

Many thanks to my amazingly talented sister for the photos. Trust me folks, you do not want to see what these would have looked like if I was behind the camera. Also, thanks to my family who listened to me talk about my ideas and who posed in photos. 

Herxing

Herxing is probably the worst part of Lyme Disease. Every time you start a new treatment the Lyme begins to viciously fight against the the the new treatment. It is generally a two to six week period of feeling absolutely awful. Not only do symptoms increase but your emotions go wild. Each time I start something new I am scared to find out what is coming. It is a challenge to willingly make yourself miserable in order to get to the end goal of feeling better.

A few months ago I was really struggling with this concept. Why does it have to be this way? And then I realized it is so similar to Christ's life on earth. He willingly went to earth knowing He would suffer. All the time He knew that it was worth it. And I am incredibly grateful for His strength and His willingness to endure that kind of emotional and physical suffering. Obviously, I am not comparing myself with Christ. He endured suffering far better than I ever have or will. But it gives me great comfort knowing that He suffered as well.

Shawn and I face another round of herxing. I have finally stopped antibiotic shots after a year. Can't tell you how happy I am to not have to stick myself with a needle three times a week! And now we are moving on to an oral antibiotic. We know it's a rough road ahead. As Shawn said the other night, " [You] herxing is the scariest thing I have ever experienced." I have to agree with him, it is incredibly scary and painful. And I am so grateful that he is always there for me. Even in the hardest days. For that I am forever grateful.

9 Years

Today I am celebrating nine years with chronic pain. It used to be a sad day for me but now it is a positive day. It's crazy how much I have been through in nine years and yet I am still happy. This is why I can celebrate!

Nine years later, I am sitting in the coffee shop. I can't move my legs but I am not worried, they'll work again soon. Instead of freaking out and calling my husband to pick me up right away, I'll wait a few hours. Why not? It makes me laugh to think that's my reaction but that's what happens after nine years!

I may not do very much but my life isn't boring! There is always a new crazy symptom coming up. And for right now, I'm okay with that.

*The leg thing happened two weeks ago. Don't worry. I'm fine! *

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.