blog · lyme disease

Giving Up Or Giving In

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This is my 25th year of suffering from Lyme disease and it’s associated co-infections and often pray it will be my last. It has turned me from an active, confident person into someone trapped in a frail, exhausted body. I went from being an enthusiastic, goal-oriented person to someone who was stripped of their ability to work, walk, shower, and care for myself. I am now a person limited to my bed or couch, missing church, family events, social outings, traveling and just being around people in general. It has changed my life so dramatically that it has shaken me to the very core of who I am.

For those who struggle with chronic illness in any form, the experience is at times unbearable and overwhelming. Not only am I affected physically, but it affects me mentally as I struggle to read, think, talk and concentrate. It affects me emotionally as I grieve what I have lost and struggle to cope with life as it is now. Life is now painstakingly slower and much more limited. I get frustrated, isolated, lonely and scared. Some days I don’t feel anything at all. It’s a constant, 24/7 assault with no certain treatment or cure and no guarantee that you come out the other end of this alive.

I often find being a Christian with this illness very hard. My mind can sometimes be too foggy to read a few verses, let alone try to think about them and apply them to my life. It’s hard to keep giving my life to Christ when I don’t really like what He’s doing with it, when embracing His will means accepting horrible symptoms, disappointments and a lack of answers. Sometimes God just feels so far away, and I feel like I’ve got no trust left, that I can’t do it anymore, and I get angry at Him because of the situation I’m in. In those awful moments when I don’t cope, I still find myself crying out: God, I know that it’s your will that I’m sick, but does it really have to be this bad?

My story is not one of victory, but of struggle. It isn’t one of knowledge and godliness achieved like the great heroes we read about in the Bible, but of constant wrestling and learning and re-learning. God is using this trial to teach me—sinful me—some of what it means to give up my life to Him.

So I figured I’d jot down some lessons I’m learning as I watch the world and time pass by.

HOPES AND DREAMS

I had so many plans, hopes and dreams for my days on this earth, but I’m learning that my plans aren’t always His plans. I thought I had good plans, but God says His plans are best. He’s reminding me that the main purpose of my life isn’t to necessarily “do” things (thought that’s what I would like!), but it’s to bring glory to Him whatever my life looks like. My hopes and dreams seem distant, and often dead, but He’s working and shaping me. He chooses what happens to me and how He will use me.

WHERE TO TURN

Throughout this suffering my heart seeks comfort, joy and peace. I’ve often turned to our broken world for these things instead of to God. I’ve found that my biggest challenge in any day is to run to Him, not to the world. I wonder sometimes how many things God has to take away from me before I listen to His voice? “Cling to Me. Cling to Me. I love you!” God is teaching me that the things I put my hope in, in this world, could be gone at any moment.

HUMILITY

Constant fatigue and unrelenting symptoms are a reminder of my frailty, weaknesses and never-ending need for God. It never lets me forget that I am small, God is huge, and He doesn’t need me to get His work done. I’m reminded of God’s complete control. He is the one who decides whether I get out of bed and how much I can do. It keeps me on my knees, and I’m learning that’s the best place to be, for that is where I belong.

MY WORTH

This illness has also helped me realize that there are things I’ve been finding my worth in apart from God. I thought my value was caught up in what I did, accomplished or the possessions I owned. But I am learning that I am no less valuable now than I was before. If I added up all I now ‘achieve’ in a whole day, it would only fill an hour of my old normal day. I am just as worthwhile, loved and significant, even if I can’t get off the couch. May this truth crush the need I have to achieve things each day to feel good about myself, and teach me to surrender to God the things I find my worth in apart from him. For my value comes from who God has made me, the qualities He’s given me and what He has done to make me His child.

CARING FOR MYSELF

I’ve never been great at asking for help, or admitting when I’m not coping well but I’m learning that it can be helpful to be real with people about how hard life is. Whenever someone would ask how I’m doing, I would give the standard “I’m ok” answer even if I wasn’t ok. It’s alright for me to tell someone how I’m really doing. I am just as important as others. If I tell others honestly how I am doing, my motive not being to complain, then it can encourage others not to hide their struggles as well, and show them that they are not alone. It can create a culture of honesty, where I can care more deeply for others, and they for me.

TEMPORARY

And most importantly of all, this illness causes me to yearn for Heaven in a real and unique way, and on the days I can really grasp its reality, it puts the pains of this life into perspective. In my life before this illness, I found it so easy to become engulfed in daily comings and goings. The slowness of my life now, the absence of that busyness, has helped me pull my head out of life in this world, and better understand these four words: this life is temporary. And much comfort is found in Heaven.

So although I will continue to pray for healing, I want to even more earnestly pray for strength to keep giving my life to Christ and trust Him in the midst of my illness. May I not run from suffering but run to my Savior, and keep pleading with Him to teach me to love Him and His ways more than I love my life, and the comforts of this world.

 

lyme disease

LymeLight Stories Interview

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I recently had an opportunity to do an interview for the lovely Taylor over on LymeLight Stories. Here is a little bit about her website-

“The purpose of the LymeLight Stories website is to share the experiences of people affected by Lyme Disease and tick-borne illness. Everyone dealing with tick-borne illness has a story to tell. The mission of this site is to allow those people an easy way to share a piece of it. Together, our collective experience is a powerful statement about Lyme and tick-borne disease. By continuing to share perspectives on life with this illness, we increase awareness—-an important stepping stone to change…At the very least, by sharing, we may change ourselves.”

 

I’m very grateful for this opportunity to share my story in the hopes that it may help others. It’s a quick interview about my journey with Lyme disease and how it’s affected my life and the lives of those around me. Please take a moment to read it and share with others so that we can spread awareness about Lyme disease.

Interview : https://www.lymelightstories.com/product-page/daniela-b-from-texas

 

 

health · lyme disease

You Are Your Best Healer

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There are lots of tips, tricks and well-meaning advice out there. The more I dive into the world of wellness trying to find answers to my disease, the more information I find. And chances are that one person’s recommendation is the same thing another person will tell me to avoid. So what have I learned? To fear not! Every body is different, we all respond different and we are all unique and wonderfully made. I am learning to listen to my body, to truly hear what it’s telling me. To hear what it wants for food, lifestyle and medicine. One person’s medicine is another person’s poison. Grains can be nurturing for some and a troublemaker for others. Some of us thrive on a diet full of raw fruits and vegetables, while others do better on more animal proteins and warm foods.

So many factors come into play to figure out what helps us thrive. Whether it’s the climate where we live, our lifestyle, stress levels, and even our ancestry affects our health. During colder times of the year or during times of Lyme flare ups, my body requires more warm, nurturing foods like soups, stews, whole grains and fats. Of course I can still enjoy my green drinks, I just choose ones with warm or spicy herbs like ginger or turmeric and root vegetables like kale.

Our bodies are intuitive, we just need to to listen to it. What’s true for all of us is that a diet full of whole foods, as close to nature as possible, whether animal or plant, are the most nurturing for our bodies. It’s best to avoid the latest fad diets and what everyone else is doing, and to do what’s best for you.

Creating healthy habits can be easy and fun. You just need to take small steps. If you’re new to juicing and green smoothies, try to make it once a week. Chances are, when you start feeling all the wonderful affects of healthy lifestyle changes, you’ll want to do it more!

You don’t have to force it, punish yourself, or feel guilty for not leading a perfect lifestyle. Those emotions are just a waste of time and energy. I just put my faith in God that He is leading me on the correct path and I will continue to do my part while I wait for healing.

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Phil 4:6-7

lyme disease

Lyme Treatments That Didn’t Work

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One of my biggest struggles in trying to heal from Lyme disease has been trying to figure out the best treatment plan for me. Lyme is so different for everyone. There isn’t any one treatment that works for all of us and since this journey is such a personal experience, it’s hard to know which way to go. What works for one person may not work for another. I’ve seen many, many doctors and have traveled many hours away from home and even out of the state to get help. I just wanted to talk about some of the doctors I’ve visited and their programs that didn’t work for me.

When I was first diagnosed, the only option that was given to me at the time was antibiotic therapy. I thought that was the only way to treat my disease so I jumped right in. I had to travel out of the state to visit a doctor that was recommended to me since he had a great success rate with antibiotic therapy. I spent about 7 months doing multiple antibiotics every day until I just couldn’t tolerate it anymore. I wasn’t seeing any improvement, they were tearing up my stomach and each time I’d go back to the doctor, I’d get another antibiotic thrown at me since I wasn’t improving quick enough according to his time table.

Once I decided to stop antibiotic therapy, I went back to my roots of natural medicine. It was a huge deal for me to even consider using antibiotics in the first place because I was raised in a home that practiced natural healing but I was so desperate for healing that I thought it was my only option.

I had visited a naturopathic doctor that was recommended to me as well who then put me on the Cowden protocol of herbal medicine along with other supplements. It seemed to have some improvements up front but not enough to say that this program was working. After about 6 months with that treatment plan, I had to stop and find another option since I wasn’t getting better.  It was quite frustrating since I’ve heard of a lot of people having success on this protocol. Here is a link to the protocol for anyone who is interested.

I then found another herbalist who I’m currently working with who has me on a treatment plan that is totally different than what I’ve tried before. She does Quantum Reflex Analysis to muscle test my body to see what supplements I need. We are doing a comprehensive plan of detoxing, supplements and emotional work. I’m hoping this is going to be the golden ticket for me and that I will heal on this program but you never know and I can’t live in the future. I’m taking it day by day, minute by minute and will trust my body to heal itself as long as I give it the tools it needs.

I’ve seen many bad doctors like one who spent about an hour berating me saying that I must not be as sick as I’m claiming since I wanted to discuss his treatment plan with my primary care doctor before starting it. He then proceeded to tell me that I must be Catholic because I like punishment and wanted me to start birth control pills to stop my period even though I wasn’t complaining to him about it. I paid $1,000 to be treated horribly. I then drove about 6 hours to see another doctor who ignored us when we walked into the room, didn’t bother saying hello. We literally sat in silence for 10 minutes while he looked at his computer. He then said, “So you think you have Lyme disease?” I told him I do have Lyme at which point he asked me to prove it. I told him it’s right in his hands on the lab test that showed I have it. While I was in the middle of answering his question about my symptoms, he interrupted me to take two different phone calls. He didn’t want to discuss the treatment with my primary care doctor because he was afraid my doctor would steal his secrets. But at least he only cost $600 which was cheaper than the last jerk.

Sometimes you have to go through horrible things to find the right plan and doctor for you. Just don’t give up on yourself. There are good doctors, there are answers, we can heal, you just have to have faith.

“What is broken can be mended. What’s hurt can be healed. No matter how dark it gets the sun is gonna rise again.”

lyme disease

Self Love In The Midst Of Chronic Illness

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Self love is something I have struggled with for a very long time. Chronic illness has a way of chipping away at every bit of self love and self worth you once had for yourself. It happens so slowly that sometimes you don’t realize it’s happened until you’re hit in the face with it one day. I’ve had a few of those moments in my life, the moments that are seared into your brain forever. Some more recent, some a long time ago.

I used to be more confident. Maybe not as confident as others I know, but it used to be easier to accept compliments or to walk in a room and be able to look people in the eye. But now, I feel like I am not as worthy as I once was. I look different, feel different, I can’t do the things I once did. I’m not the same person I was before.

Having to park in a disabled spot despite the glares from others, or using a wheelchair while people watch, being unable to read, or wash myself, all these things feel like a blow to the self esteem I once had. I used to never be seen without makeup. Now I could care less because the makeup doesn’t cover the sickness. You can see it in the darkness under my eyes that concealer doesn’t cover, or the 15 pounds I’ve lost that my clothes can’t hide.

And don’t forget the constant guilt I feel. Guilt for not being able to do much for myself, guilt for not being able to contribute to my household, guilt for having my family do everything for me on a daily basis, guilt that I can’t go on dates with my husband, or shopping with my sister, and all the other things I used to enjoy.

Some days its hard to watch others forge ahead in their lives, as they lay the foundation for their careers and start families of their own, while I make a career out of blending green smoothies and popping hundreds of pills. But everyone has their set of challenges too. They may not involve endless doctor visits and medical anomalies, but I think we’re all given a set of obstacles that shape us into who we’re meant to be.

I’m sure everyone is tired of hearing me apologize to them everyday just for being me. But I don’t need to apologize for who I am. I didn’t choose this body, I didn’t choose this illness. I must acknowledge my limitations and work with them, not fight them. God loves us for who we are and doesn’t expect us to put our value in our accomplishments. Eph 2:10 says “…we are created in Christ Jesus to do good works, which God prepared in advance for us to do.” God prepared me in advance for this time my life. When God said we are to do good works, He isn’t saying “Get yourself out there and get to work!” Rather, He is emphasizing that He has planned for this time in my life, even if it seems a bit quiet and unproductive. So I must continue to do the work He has called me to do, even if it’s as simple as writing a blog post.

I must try to forget what is behind and look to what is ahead (Phil 3:13). God has great things in store and knows my limitations. He works all things together for good. It doesn’t mean that what I’m going through is good, but He will make good come from it whether it’s a blessing to myself or others.

Lyme disease is my teacher. Though it’s weakened my body and sucked some of the life out of my organs, it’s taught me where my true strength lies and it breathed new life into my world. It’s taught me the value of gratitude, the true definition of courage, and the importance of unconditional self love. Because of Lyme disease, I know how to find the light switch when things have gone impossibly dark, and how to laugh when life doesn’t seem very funny. Though it’s been a hard lesson to learn, I’m learning to allow this disease to continue to shape me each and every day.

In the mean time, I’ll just wait for the glorious day that I get to exchange my body for the one that Jesus Christ has in store for me in Heaven. I will pray daily that God will help me learn to love a body that I do not feel pride in, a body which causes me daily frustrations, and that He will restore my self image and self esteem. We are after all made in His image, and if He loves me, why can’t I love myself? I will no longer hold myself to the standard of the world, but to the standard that God has set for me. I will not let hard circumstances harden my heart and closed doors won’t close my mind. My body may be somewhat unreliable but my spirit isn’t.

So I’ll still make the hard walk from my couch to the backyard to sit outside and enjoy the beauty God made, to feel the warm sun on my skin and the breeze in my hair. I’ll still smile when I don’t feel like smiling. I will still laugh and yet allow myself to cry. I will still be thankful for what I have no matter how big or small because this is the life God has blessed me with. I may be healed one day, or I may not. I will maintain hope though. Because this is just a moment. It may feel like a lifetime, but there will be something good from this one day. This is where I’m at right now and that’s ok. I’m doing my part, now I’ll just wait for God to do His.

I am worthy. I am loved. And so are you.