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.

 

health · lyme disease

Why Stress Is The Most Dangerous Toxin To Our Bodies

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Photo: Shutterstock

What we think and feel, and how long we think it or feel it, determines our health. The science is strong, and yet so often stress is considered a gray area, something we can’t put our finger on or measure, and so it gets dismissed as not being “real.”

So many times I’m told by doctors to reduce stress but I always end up thinking, I don’t feel like I am stressed so how can I work on reducing it? What we don’t realize is that the meal you just ate, or the conversation you had yesterday impacts your stress response.

Here are 10 concrete ways stress is possibly the most dangerous toxin your body faces every day.

1. Stress changes gene expression.

The chemicals your body produces when you are under stress turn on or off genes that change everything from how much fat you store, to how well your immune system works, to how fast you age, to whether or not you will develop cancer. Ever see those commercials on tv talking about reducing belly fat by reducing cortisol? Cortisol is a hormone produced when your body is under stress. Reduce stress= reduce corisol= reduce body fat.

2. Early life events determine your set point for stress.

Research shows that even very early childhood events “set” your CRH, or corticotropin releasing hormone, at a high or low level. CRH is like the foot on the gas turning on your adrenals, and therefore your stress levels.

3. Stress causes brain damage.

High levels of stress hormones damage critical parts of the brain, such as the hippocampus, the area responsible for memory. One reason people experience “adrenal burnout” after long term chronic stress, is because the brain, in order to save itself, turns off the adrenals. That is why people, such as myself, in states of long term chronic illness have adrenal fatigue.

4. Stress shuts down the immune system and increases inflammation.

From slowing wound healing, to diminishing the protective effects of vaccines, to increasing your susceptibility to infections, stress is the ultimate immune-modulator. Stress can also reactivate latent infections — people who get cold sores know this from experience. For myself, it reactivated my Epstein-Barr virus due to long term chronic illness which caused a state of chronic stress on the body.

5. Chronic stress damages the energy powerhouses of your body, your mitochondria.

These energy factories produce ATP, the currency through which all cells and organs in your body do their work. The good news is this damage is reversible over time, as stress goes away.

6. Stress reduces your ability to metabolize and detoxify.

Studies have shown that the activity of hundreds of genes responsible for enzymes that break down fats and detoxify prescription drugs, are negatively impacted by stress. Stress can also increase your toxin burden by increasing your desire for high fat, high sugar foods.

7. Your cardiovascular system responds to stress, increasing cardiac output if you have to run away from a tiger.

But chronic stress has been shown to increase the thickness of the artery walls, leading to high blood pressure and heart disease.

8. Stress messes with your sex hormones.

Stress increases the amount of something called sex hormone binding globulin, the school bus that ferries testosterone and estrogen around your body, meaning fewer of these hormones are available to your cells. Chronic stress also increases the production of cortisol, leading to something called “cortisol steal,” where fewer sex hormones are produced.

9. Stress is bad for your bones and muscles.

There is evidence that higher stress levels are associated with lower bone mineral density, and many studies show that people under chronic stress experience more physical pain.

10. The gut and stress are intimately intertwined.

You may have heard that 95% of your serotonin is in your gut, and you may remember a time when you were nervous or sad, and your belly was in knots.

But more research is showing how stress impacts the function of your gut every day. It slows transit, leading to constipation and the re-circulation of hormones like estrogen through your liver. It increases the overgrowth of bad bacteria. And it loosens the barriers between the cells that line the intestines, creating something called leaky gut, that then leads to inflammation, food sensitivities and even autoimmune disease.

OK, so now that you know how stress impacts your body, what to do about it becomes the real question. Enter functional medicine, in which we look at the body as an interconnected matrix. We then recommend ways of modifying and supporting each aspect of the matrix, so that the system comes back into balance.

If this is an are of your life that you hope to improve, I recommend that you find a functional medicine physician who can help you bring your body back into balance.

I will also write in another post some tools you can do to reduce stress in your life.

 

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.

 

health · lyme disease

Greens and Thyroid Issues

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Got thyroid issues? I struggle with hypothyroidism as one of the many side of effects of Lyme disease. So not only do I lose large amounts of hair, it causes dry skin, fatigue, constipation, cold body temperature and a host of other symptoms. I love to eat greens whether cooked or in juice or smoothie form. But there is a down side to consuming too many raw greens especially with an underactive thyroid.

Raw greens from the brassica family (cabbage, spinach, kale, collards, etc) contain glucosinolates, which can inhibit iodine uptake and act as a goitrogen (substances that supress thyroid function). For those of us with thyroid issues, drinking and eating too much of these vegetables in their raw state can further agitate the condition. Instead, rotate your greens to prevent buildup of oxalic acid, which can affect the thyroid. Also as a side note, healthy fats from avocados and other foods actually help stimulate thyroid function so don’t skip the fats!

If you have thyroid issues, I suggest using romaine lettuce as your leafy greens instead of kale or spinach most of the time. Some raw kale or spinach from time to time is fine, but if you get on the smoothie bandwagon and start making a green drink everyday, it’s worth mixing up your greens.

In general, remember that variety is the spice of life. Not only does it help keep your taste buds happy, choosing different fruits and vegetables ensures a variety of nutrients and a well-rounded diet.