lyme disease

Having Mindfulness In the Face Of Incurable Chronic Illness

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Mindfulness– a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

I realized from a young age that something about me was different from my friends. When we would play outside at recess or during gym class, I lagged behind, sat out, or went home crying and sick. Many days in school were spent in the nurse’s office, laying on the cot, shaking and covered with a blanket, waiting for my mom to come pick me up.

I knew I was different, I just didn’t understand what was happening. After being shuffled around from doctor to doctor for many years and almost not graduating from high school due to missing so many days of school, I knew life for me would be different. There were no plans for college, living on my own and working didn’t pan out, so I had to learn to adjust to a new life, different from all my peers. After 24 years of not having answers, I was finally diagnosed with late stage Lyme disease.

Along with that diagnosis came depression and anxiety. I didn’t realize how much my life would be changed by this disease and there are days where I’m still in denial, most likely because of my desire to live a “normal” life. Life became about going from one doctor to another, constantly finding things wrong with me and having a desire to try and control everything around me since I couldn’t control what was happening to me. I knew my body was under attack and there wasn’t much I could do about it.

 

As human beings, we like to have control. But when you’re living with something like an incurable illness or a disability, there’s a unique form of stress that arises when you realize a major part of who you are is out of your hands. That, with no justification as to why, the deck of cards you’ve been dealt is vastly different from those around you. People generally like to take bad things and make them better. We like to mend things when they’re broken. But when a fundamental element of your existence is unfixable, an array of emotions bubble up to the surface. Sometimes they break through, or sometimes, I’ve found, they can lay dormant for a really long time, bubbling like hot lava, but eventually they come to the surface.

The way I see it, there are three ways to look at the hand you’ve been dealt. One way is to disassociate from them and pretend it doesn’t exist. The second is to acknowledge them but with anger or sadness, living a life full of complaints, driven by worry, and fear. The last, and most difficult, is to acknowledge them with grace and gratitude for what good lies within.

I wouldn’t say I had a light bulb moment. Over time I began to recognize that I couldn’t control the things that were happening to me, but I could control how I responded to them. Maybe it was my husband constantly reminding me to be positive or all the self-help books I read, or maybe it’s the inevitable growth you go through when faced with a life-altering situation, but I came to accept that my condition wasn’t going anywhere. It wasn’t going to change, so I would have to change from within.

When I chose to start finding the good buried beneath the bad, I knew I had to figure out a way to see the beauty in life. This meant living in the moment, not in the fear of my future. For as long as I remembered, I’d been bad at being present. And it’s not surprising as to why. Living with a disease, there is constant worry: Will it ever go away? Will I lose the ability to walk entirely? Will I ever have children? Will I be able to pay all these medical bills? Will I ever be normal again? Will I die?

Even day-to-day things that are normal for everyone else, like breathing, walking or going to the store can remind me of how different I am and bring up the fear of how much worse things might get. As with any incurable or progressive condition, these thoughts can run rampant and take a paralyzing hold of our days and our lives.

Knowing that being in the moment was really difficult for me, I decided to get more serious about changing my mindset. I began to practice mindfulness. Mindfulness is generally regarded as the act of being in the present moment, without judgment. When we are more mindful, we are more insightful. We become more present in the here and now.

After a while, senses become more enriched. I began to taste my food more. I started really listening and hearing what people were saying. I took note of the feeling of the sun on my skin or cold air on my nose. I became more attuned to other people’s sufferings. It was like I began to see life more clearly. I realized how unimportant a lot of things are in life that we tend to put so much emphasis on, like what job you have, or how nice your house and cars are or if you can go on expensive vacations. I began to truly witness and connect with all of life’s precious fleeting moments knowing that our time here is very short, and for some of us, it’s much shorter.

Mindfulness has taught me to slow down and reflect before I react. Having lived for so long in a hyper-stressed state with mental and physical ailments feeding off one another, I can look back now and say that being more present is transforming my body, mind, and soul.

Today, I choose to see my deck of cards through a very different lens. What once looked like a dark curse has transformed into something light—a blessing, even. Without my disability, and the journey I embarked on because of it, I wouldn’t have never been able to find gratitude. Being an individual with an incurable illness is a fate that I’ve accepted. Doing this led me to my purpose of helping others, and that’s something I would never change.

 

lyme disease

Go Fund Me Campaign For Lyme Disease

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Hi everyone!!! I have Lyme disease, Bartonella and Babesia.  I was bitten by a tick that transmitted the bacteria that caused my illness which by the way is a very serious one. This tick disease literally almost killed me.

My health has been rapidly declining in the last 2 years. After visiting many doctors in and out of the state and trying multiple types of treatment and medications, I have not been making progress in getting better.

It has literally affected my entire body, from my brain to my skin, heart, extreme body pain, eyes, shaking, numbness, tingling, kidneys, liver, neuropathy, balance issues, weakness in my legs and arms and everything else that you can imagine. I have been using a wheelchair and cane for a couple years now. I have to have 24 hour care and need help even with simple, everyday tasks like eating, showering and going to the bathroom. I only leave home to go to the doctor and had to quit my full time job a few months ago because I could no longer physically function enough to do my job.

I have spent tens of thousands of dollars already on doctor visits, lab tests, medicine and travel. It is only getting more expensive as my illness progresses. Since Doctors are not legally allowed to treat Chronic Lyme Disease, it is not covered on insurance.

The next step in trying to find help in recovering from this illness would be to go to the Hansa Center in Kansas. It would require a 2 week initial stay for treatement and then recurring visits every couple of months. It costs about $12,000 for the 2 weeks not including our travel costs and expenses to stay there. Subsequent visit are between $3000-5000 for a 3-5 day stay.

This is almost a last ditch effort to try and find healing since I’ve exhausted options in my local area.

If I hadn’t been misdiagnosed for so long  which cost us a lot of money along the way, then I would be in a better situation to pay for this center. But unfortunately, we’re only living on one income now and most of that money goes to paying my medical expenses. Plus my husband has used up his vacation days from work so we wouldn’t be receiving his income anymore on the days he can’t work to take me to the center and follow up appointments.

So to all my friends reading this, any donation will be much appreciated to help me with the cost of my treatment so I can get to where I was before getting sick. Share if you can…..

Thank you so much!!!

http://hansacenter.com/

https://www.gofundme.com/danielaslymetreatment

 

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