Condensing A Year

(“I hear rumors that I am well. Someone mentioned it to ‘this’ person, ‘this’ person then told ‘that’ person, and finally, ‘that’ person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.” More Than 43,000 Pills Later, October 23rd, 2015).

Where do I begin? I’m lying in bed typing, trying to push through the fatigue. I’m exhausted. No. I’m depleted. But that’s often the case with chronic Lyme disease. What can I say that you don’t already know? Some days are terrible. Some days are okay. I feel like a broken record sometimes–repeating the same verbiage day in and day out. Three years into treatment and yes, I’m still sick. Although you probably can’t tell by looking at me.  

I’m still fighting Lyme disease. October 2015-January 2016

My healthcare team uncovered a Babesia infection–a malaria-like parasite–and a high viral load. Since I didn’t have the obvious symptoms of these infections, I had some doubts about this diagnosis. I had done the immune-boosting, GcMaf therapy with Bravo Probiotic for several months, so I encouraged my nurse practitioner to intensify my treatment. I wanted 2016 to be my best year yet, and I thought I could tolerate an aggressive regime. Initially, I had some good moments. I went ziplining, celebrated our ninth wedding anniversary, Thanksgiving, and my birthday. Then, without much warning, I got knocked down. I crashed so hard I could no longer lift my head from the pillow. My mother, who I rarely get to see, had come for a visit over Christmas. Sadly, I spent two days of her time here lying in bed. After the new year, I spoke with my nurse practitioner, and she ordered me to stop all medications and have some blood work done. Sure enough, my test results confirmed elevated liver enzymes and kidney function, and I was told to stay off all medications until my overworked organs were back in their normal ranges.

I’m still fighting Lyme disease. January 2016-April 2016

Two months. That’s how long it took for my liver and kidneys to return to normal. Following this setback, I became angry. I was angry that I was undertaking such a fierce treatment protocol without the support of knowledgeable, local physicians. I was angry that no matter where I went for healthcare, I was thrust into the role of patient, advocate, and educator always having to point out the inaccuracies of testing and the old, erroneous treatment guidelines. Lyme disease is serious; in some cases, it’s deadly. I had to explain this bitter reality to every physician I met. If it weren’t for a select group of doctors willing to put their licenses and careers on the line for me, I would be dead. Period.

That’s a hard pill to swallow.

Eventually, I consulted with a Lyme Literate Medical Doctor (LLMD) in Indiana to re-work the previous protocol that caused me to tank. The treatments I endured from him were intense–like knock-you-on-your-ass intense. But I persisted because that’s all I knew how to do. Days went by, and I was stuck in bed again trying to figure out the next step (I’m always trying to figure out what’s next).  

In March, I began weekly intravenous, ultraviolet light treatments. It’s an alternative intervention, but I heard promising reports that people were close to remission with this treatment. It was a pricey and sometimes painful attempt, but the hope of improving my quality of life was dwindling. At this point, the tremendous financial burden this placed on my family and me seemed worth the risk.

I’m still fighting Lyme disease. April 2016-July 2016

For awhile, I was improving with the new combo of medications and the UV treatments. In May, my husband and I took our first plane ride in eight years. We went to Nashville to visit some friends. While I was nervous about the large quantities of medication I had to bring with me, things went pretty smoothly. I came back from the trip feeling like I was making progress with my health–this time for good. I couldn’t believe I had conquered such a huge healing milestone!

In June, we adopted a new puppy. For a short time, I was the owner of THREE dogs! The puppy brought new energy into our apartment, and I enjoyed many walks with her through our neighborhood. Sadly, my upswing was short-lived, though, and I ended up in the emergency room after battling a colitis-type episode for a few days. While that episode resolved, I quickly began heading downhill once more. By July, I no longer saw benefits from the UVLrx treatments or my medications. The fatigue came back with a vengeance as I struggled to preserve the improvements I’d made. Sliding backward is a heartbreaking part of this illness, I’ve learned.

I’m still fighting Lyme disease. July 2016-October 2016 and beyond

So, shouldn’t I be used to this by now? I’m not. I’ll never get used to the anguish of the low points, or watching my dreams slip away. Sadly, my summer wasn’t what I had expected. I wasn’t able to attend my high school reunion, visit friends, family or do much of anything. In August, I stopped the UVLrx treatments at the six-month mark. Also, I tested positive for mycoplasma pneumoniae–another bacterial infection I had to contend with. 

“Maybe you’ve been reinfected. Do you recall any tick bites?” my nurse practitioner asked due to my increasing symptoms. How could that be? I’d hardly left the house the entire summer! I prayed she was wrong, but I was terrified she might be right. Could I have missed one, microscopic tick? What would I do if I had to begin this journey all over again? 

Then, life happened, and it forced me to put my health on hold. On October 6th, we put our almost 17-year-old beagle named Seven to sleep. Just typing her name still causes a dull ache in my heart. There’s no doubt it was her time, but it still hits me like a punch in the gut. She was my first dog, and when I was at my worst, I whispered in her ear one dispirited day, “You have to stay well until the day comes where I am strong enough to handle it.” I am grateful she upheld her end of the bargain. Even though I didn’t feel healthy, I managed her death without sliding further down the hill. Maybe I’m just too sentimental, but it sure felt like I hung on for her, and she hung on for me.

I connected with my nurse practitioner over a Zyto scan a few weeks later. The scan showed very high levels of oxidative stress, brain inflammation, and the Babesia infection from nearly a year ago.

But, there was good news too! After three years of treatment–three years of powerful medications–I no longer tested positive for Borrelia (the bacteria that causes Lyme) or the co-infection Bartonella. At least, for now. Insert happy emoji of the dancing lady in the red dress.

My nurse practitioner and I settled on a more simplified treatment plan of Malarone, tinidazole, and Tagamet. Although Tagamet is an antacid, it’s been shown to reduce brain inflammation, so I take it after meals to not interfere with my digestion. It’s still too early to tell, but I think it’s helping. Fingers crossed that it’s helping. I’m ready for a big shift to occur. I’ve been ready and waiting for a very long time…

The last of the golden fall sun.

The last of the golden, fall sun.

“A wind has blown the rain away and blown the sky away and all the leaves away, and the trees stand. I think, I too, have known autumn too long.”

-e e cummings

Five Ways Pilates Can Help You Heal From Lyme Disease

Please Note: this article first appeared on ProHealth on March 22, 2016

It’s no secret to those who know me that I love Pilates. In fact, I’ve written about it a few times in the past (and probably will again) Pilates is a unique system of exercises, created by Joseph Pilates, designed to enhance strength, flexibility, posture, balance and to foster a connection between the mind and the body. 

In this article, I share with you some of my journey toward wellness, and ways in which Pilates is a useful, therapeutic tool to help you on your road to recovery.

The word “challenging” does not even begin to describe the starting point of my health struggles. For years, I battled an ever-growing list of strange symptoms until a doctor diagnosed me with Chronic Fatigue Syndrome in 2010. Despite doing everything right; all that my doctor told me to do, I became more frail by the day, as weight inexplicably dropped from my 5-foot 6-inch frame.

Soon after my diagnosis, a series of soul-crushing events occurred; I lost my job, my car, most of my friends, my ability to sleep, financial stability, and my physical strength. During the next three years, I spent 18 months bedridden, only able to get up for a few minutes each day.

Sadly, I began to believe that my chances for a better quality of life were quickly slipping away. In a last ditch effort to find some help, I saw yet another doctor. He carefully combed through my medical history as my spent form draped over the chair across from him. When he lifted his head from his desk, he calmly said, “I think you have Lyme disease.”

Though armed with a new diagnosis and a heap of information, an entire year passed before my weak body was able to tolerate any treatment. In October 2013, a nurse practitioner created a gentle protocol for me that paved the way for healing to finally begin. I had an enormous uphill battle in front of me, but I was ultimately glad to be moving forward.

Along with my medical treatment, I promised myself that I would faithfully integrate Pilates into my protocol. Initially, it was a monumental task due to the level of physical decline I experienced from years of being homebound and incapacitated. However, I persevered, and stuck to my decision to make movement-based, exercise therapy a priority. Pilates has been a crucial part of my rehabilitation as it has safely allowed me to explore my current relationship with my body, my strength, and limitations, as I progress toward restoring my health.

I believe that nearly everyone–yes, both males and females–battling Lyme disease can benefit from incorporating the Pilates method into their treatment regime. Here are five ways Pilates can help you heal from Lyme disease.

1. Pilates reconnects your mind and your body.

Chronic Lyme disease can make you feel as though your body has betrayed you, and that you have no control over what’s happening to you. In contrast, a consistent Pilates practice reinforces the connection between the mind and the body and allows you to see that although many things may not be in your control, you still have the power to make specific changes to movements in a manner that feels best to you. When you focus your attention on the muscle groups working during an exercise, you become acutely aware of the slight adjustments each muscle is making to rebuild your body.

Understanding that your mind and body work together to develop a stronger you is a very encouraging thought.

2. Pilates balances your body.

If you’ve experienced prolonged periods of inactivity or bed rest, you’ve probably noticed an increase in muscle weakness, tightness, and perhaps, even an increase in pain. These are the results of a body that has become imbalanced and deconditioned. With an emphasis on strength, flexibility, stability and mobility, Pilates provides a balanced workout for you. With each session, you will slowly notice an increase in muscle tone and joint range of motion.

3. Pilates reduces restrictions and poor movement patterns.

As I mentioned earlier, stress, pain and lack of movement take their toll on you. Your body adapts in the best way it knows how—by overcompensating in some areas and under compensating in others. These types of maladaptive patterns lead to muscle misalignment. Fortunately, Pilates allows you a chance to release restrictions throughout your tissues, adjust poor movement patterns, and improve your postural alignment. As renowned Pilates instructor Alycea Ungaro explains:

“As you exercise, you must always be aware of your alignment. Your workout is an opportunity to self-correct your misalignments. By learning to strengthen your weaknesses and correct your poor habits, you can restore optimal alignment to your body.”

As you engage the right muscles needed for each exercise, you will discover you can let go of excess tension and effort. Soon, you will see the advantages of new, more efficient movement in your body.

4. Pilates develops a strong core.

The core (AKA the “powerhouse”) is made up of the muscles in your abdomen, low back, hips, and gluteal area. Your core is always on duty; in fact, it’s constantly working to provide support and stability to your spine. When you’re sedentary for an extended length of time, your core begins to weaken, which decreases your ability to move efficiently.

The source of energy and the starting point for all exercises in the Pilates repertoire is your core group of muscles. As you strengthen this area, your balance will improve, and your movements will require less energy. You will sit and stand with better posture and more comfort.

5. Pilates adapts to your current level of fitness.

When traditional exercise programs often deplete you of energy, Pilates can be customized to suit your current fitness level. In my early days of recovery, I dealt with severe orthostatic intolerance problems and relentless fatigue that only allowed me to practice Pilates in a supine position. Thankfully, there are hundreds of exercises and variations that can be done lying down, so I never lacked options.

Similarly, you too may deal with severe fatigue, pain, or other concerns making most forms of exercise impossible to do. In such circumstances, Pilates can be used as a restorative tool to gently rejuvenate your mind, body, and spirit.

If you are considering incorporating Pilates into your pursuit of wellness, I suggest that you invest in at least a few sessions to learn the foundational principles of the method before undertaking a personal practice. With a solid list of benefits, Pilates truly is a fitness solution for those of us with chronic Lyme disease.

References:

Ungaro, A. (2011). Pilates Practical Companion. New York, NY: DK Publishing.

Q & A Sunday

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Q: How are you doing after Brucella treatment?

A: Recently, I’ve gotten a few emails asking me this question. I treated Brucella in August of 2014. I took a combination of 600mg of Rifampin and 200mg of Doxycycline for six weeks. This protocol is one in which Dr. Horowitz recommends for his Brucella patients.

To be perfectly honest with you, I am not sure if it did anything. Brucella has not popped up on any other tests and treating it didn’t seem to yield much improvement. Additionally, I wasn’t able to tell which of my symptoms were linked specifically to Brucella. I am still battling many of the same symptoms since I was first diagnosed in 2013 (fatigue, insomnia, burning sensations in my brain and spinal cord, jaw pain, and so on). However, I am battling some of these symptoms to a lesser degree now. All in all, I can’t say that I made any significant progress in treating Brucella.

At the present time, I am treating Borrelia (still) and Babesia. This new protocol remains challenging, and although I don’t yet feel any drastic changes, I believe there maybe some subtle shifts happening inside. I just try to take things one co-infection at a time, hoping that with persistence, I can beat Lyme, get my energy back, and go on with my life.

I am so ready for that to happen!

Finding Strength In Two Senior, Rescue Beagles

I am no stranger to hardship. In fact, I live it daily. Beneath the smiles is someone who is struggling–someone who awakens each morning and says, “Let’s give this life a shot again today.” Every healthy decision I make for my body gets me one step closer to my end goal–remission. However, the process is long and grueling, and with each setback, I live through brutal periods of discouragement often unseen by the world’s eyes.

Nearly a decade ago, the doctors diagnosed me with the first of a series of health conditions, called Interstitial Cystitis (IC)–an extremely painful, inflammatory condition of the bladder that substantially reduced my ability to work and profoundly impacted my quality of life. I was in agony, and I was not finding success with the available treatments. Chronic pain often brings about an inadvertent seclusion. In other words, I was heartbreakingly lonely because I quickly became isolated and unable to keep up with my active and social lifestyle.

Around the same time I was diagnosed with IC, I got married to my fiance, Tom. On our wedding day, he chose to walk the long, twisting road of illness hand-in-hand with me. I am not sure he fully knew what he was getting himself into, but he has never once questioned the challenging hand dealt to us.

Tom came into the marriage as a package deal–he and his sidekick, rescue dog named Seven. At that time, she was a feisty, seven-year-old, beagle with hazel eyes who pranced to the beat of her own bark. True to beagle form, “Stubborn” was (and still is) her middle name. Unlike other dogs, Seven never cared much for affection, cuddling or amusing her human owners. “She’s particular,” we said as she wiggled away from any attempts to snuggle with her. She was my first dog and has the distinction of being the most boisterous pooch on the block.

winona-hotel-seven

As one medical treatment after another failed me, I shed numerous tears. There were times I felt stuck and would crawl into bed, holding tightly to a small sliver of hope that I was in some such way still able to be helped. Typically, the days spent by myself while Tom was at work were the most challenging for me; the discomfort was unbearable.

Much to my surprise, Seven frequently appeared beside my bed, gazing up at me with almost human-like eyes. It was as if she knew I was hurting, and in her willful way, she tried her best to comfort me. Though she was cautious, she let me scoop her up, and I laid her beside me on the bed. Then, she allowed me to rub her belly for hours at a time. In her unique way, she helped me survive the bleak days of being newly diagnosed with a chronic illness no one knew much about.

After a few years of marriage, my health stabilized a bit, so my husband and I decided it was time to add a second dog to our little family. At the shelter, we met an overweight, six-year-old beagle named Caylie. She came with a list of health problems, but her easy-going and bubbly disposition made her irresistible. She had an unusual, scorpion-like tail, and deep, black eyes that pierced our hearts like lasers. Despite her health issues, she was perfect, and we adopted her on the spot.

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From the moment we brought Caylie home from the shelter, she had an impressive talent. She bats our couch throw pillows around with her paws and perfectly stacks one on top of the other; she climbs to the top of her pillow peak with the grace of a mountain goat and rests the day away. Barely anything warms my heart more than watching her do this. It’s that cute; it makes me smile a hundred times over! With time, Caylie regained her health, and she and Seven formed a strong bond.

In many ways, Caylie is the exact opposite of Seven. She is playful, goofy, and consumes anything that remotely resembles food. She has an exceptional taste for the creamy, frothed milk topping of Tom’s homemade cappuccinos, Chicago-style pizza, and an occasional Altoid. At night, she often places her furry, little noggin on my lap and falls asleep. She’s the cuddle bug of the family.

Indeed, I wished the story of my chronic illness ended here–with one dog snuggled up on my lap and the other snoring peacefully in her fluffy bed. Nonetheless, it does not.

Sadly, my health didn’t remain steady. I declined with rapid intensity until I was too weak to get out of the bed. I remained bedridden for eighteen long months before two doctors finally diagnosed me with late stage Lyme disease–a chronic form of Lyme disease for which there is no cure and no linear path to healing. To say that my dogs have been a source of joy and strength for me as I fight to reclaim my life is an understatement. Through hearty tail wags, loads of personality, and frequent doses of silliness, Seven and Caylie remain my beams of light along a sometimes dark and deserted road.

Years have passed since we became a family of four. Caylie is now 13, and Seven just turned the ripe, old age of 16. My two senior, rescue beagles are nourishment for my soul to continue the long journey towards improving my health. I had no idea that a couple of white-faced, old pups would continually renew my sense of hope, and be the best medicine I’d ever find.

I’d love to hear stories about how your pets have helped you heal. Please feel free to leave a comment.

Update: On October 6th, 2016, Seven was laid to rest. Our hearts are broken, but we find comfort in knowing she is no longer in pain. Seven will always be our number one–the original member of @twosweetbeags. In loving memory of Sweet Seven Beags. January 2000 to October 6th, 2016. She was three months away from her 17th birthday. 

Q & A Thursday

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Q: Have you tried incorporating acupuncture into your recovery?

A: I get asked this question quite often–usually by people who have success with acupuncture as a therapeutic tool.

With the same positive results as so many others, I too experienced the incredible benefits of integrating acupuncture into my protocol. In 2013, I went to my first session; I could barely stand, walk, or sit upright. After my second visit–in a rare moment–I was able to go shopping for 2 hours. That was an activity I hadn’t done in two, long years. The results were nothing short of dramatic. For me, acupuncture jump-started my healing, and I continued to go for an entire year. Unfortunately, it became too cost prohibitive for me, and I had to quit going at the end of 2014.

Recently, my treatment protocol intensely increased to tackle Babesia and overcome the plateau I experienced most of 2015. At the same time, I began reading Dr. Horowitz’s book, Why Can’t I Get Better? In his book (2013), he writes, “Acupuncture and Chinese medicine are clearly useful adjuncts in certain treatment-resistant patients, even though we may not fully understand why it works” (p.118).

Once again, I feel as though acupuncture could be a vital part of my current treatment along with the medications, herbs, and supplements I take. I now go once a week, and I feel hopeful that my stalled healing will get a much-needed boost.

To hear more about my experience with acupuncture, please listen to my podcast on Lyme Ninja Radio.

A DIY French Green Clay Mask That Will Refresh Your Skin on mindbodygreen

Please note: This article was originally published on mindbodygreen on February 16th, 2016.

I love green beauty products, and I probably have a slight addiction to them. To my pleasant surprise, I awoke this morning to find one of my beauty articles published on mindbodygreen! Want to look like you’ve slept eight hours even if you haven’t? This is the mask for you.

Photo is the copyright of lymeroad.com and Jenny Lelwica Buttaccio

Photo is the copyright of lymeroad.com and Jenny Lelwica Buttaccio

I’m a professional insomniac. Despite having tried nearly everything to fix my sleep woes, I continue to toss and turn most nights. It’s an unfortunate symptom of a chronic illness, so it’s not likely to change anytime soon.

As expected, the lack of sleep takes a toll on my skin, so to combat my perpetual shortage of shut-eye, I’m eternally obsessed with finding a green beauty routine that keeps my skin looking as healthy as possible.

In the wee hours of a recent snooze-free morning, I lay in bed thinking of a way I could achieve great-looking skin even as my precious sleep eluded me. Enter thoughts of French green clay.

This mineral-rich mud forms a perfect base for a DIY mask that both exfoliates and revitalizes, and a protein-packed egg yolk provides an easily absorbable combination of nutrients to restore tired skin.

The day after my all-night bout of insomnia, a friend asked me why my skin looked so good and whether I had changed my beauty routine. I just smiled at her and said, “It’s thanks to insomnia!”

French Green Clay Mask To Revive & Refresh Your Skin

This clay mask takes about five minutes to prepare and contains a handful of get-your-skin-glowing ingredients. Best of all, these items are easily found online and at your local health or grocery stores, making it a cinch to look like you got a full night’s sleep (even if you didn’t).

Ingredients

  • 1 tablespoon French green clay (available from a health food store or online)
  • 1 teaspoon coconut flour (you can also use oat flour, almond flour, corn flour, etc.)
  • 1 organic egg yolk
  • 3 teaspoons filtered water, spring water, or aloe vera juice
  • 2 drops geranium essential oil (optional, for normal skin)
  • 2 drops lavender essential oil (optional, for acne-prone and sensitive skin)
  • 2 drop chamomile essential oil (optional, for dry skin)
  • 1 teaspoon avocado, jojoba, sunflower, or olive oil (optional, for dry skin)

Preparation

Combine the first four ingredients in a bowl. If you have dry skin, add your oil of choice (avocado, jojoba, sunflower, or olive oil). Next, gently mix in the two drops of your preferred essential oil.

Please note that you can still use this mask even if you don’t add any oil or essential oil — a mask using only the base will still slough off dead skin and leave your complexion refreshed.

Now you’re ready to apply the mask!

Cleanse your face with warm water to open your pores and remove makeup. Gently pat your face with a towel until there’s just a little moisture left on your skin.

Use your fingers to apply a thick layer of the clay paste to your face, avoiding the eyes, eyebrows, and lips. Let the mask sit for 15 minutes or until dry. Then carefully wipe the mask off with a wet, warm washcloth.

Follow up with your favorite toner, moisturizer, or facial oil. Ta-da! Gorgeous skin.

Use once or twice a week for best results.

Q & A Thursday

Today, I am very excited to announce the beginning of a new section on my blog called, Q & A Thursday. As people search for more answers, I find myself unable to respond to all the emails I receive. My hope is that weekly question and answer posts (or whenever I feel up to the task of writing them) provide insights into the more commonly asked questions. Wishing everyone continued hope and healing in the new year! May this year be a breakthrough year for us all!

 

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Q: I saw some photos of you online, and it seems like you’ve been doing better. How are you feeling now?

A: Well, how much time do you have? That’s a complicated answer.

Above all things, I try my very hardest to remain hopeful and optimistic during what is hands down the most challenging and grueling time in my life. When my symptoms ease up for a short period, I take full advantage of the opportunity. Those quick flashes of time are what you see captured in my photos–moments of promise and joy. I am doing better in those moments because, well, I am living.

In contrast, I struggle with intense, prolonged episodes of debilitating exhaustion. It’s never fully gone, but sometimes it lessens. Whenever I change my treatment protocol, the fatigue intensifies. I have recently begun treating Babesia, and if it’s possible to be exhausted from being exhausted, that’s pretty much where I’m at right now. I find it difficult to leave my house due to the lack of energy. I require more rest times throughout the day; it’s a bit reminiscent of the days before I started treatment and I am trying desperately not to freak out. Admittedly, I had a bit of a breakdown this morning.

But, if there’s one thing I know, it’s that Lyme is a roller coaster that never stops. While this ride has dipped down for the moment, I know it will eventually climb again–hopefully, sooner rather than later. In the meantime, I will continue to follow my treatment protocol and get back into the habit of a consistent detox regime.

Thanks for the question.

Lessons Learned Through Joy, Pain, and Self-Discovery

[Note: This article originally appeared on Pro Health on December 7th, 2015. www.prohealth.com. Christmas is a time for reflection over the past year, and celebrating the possibilities for the new year. It seems appropriate to me then, that I would post this article today. Wishing everyone a very Merry Christmas, Happy Holidays and a new year filled with joy, peace, and healing. Here’s to 2016!]

October 24, 2013, was probably an average Thursday in the lives of most people. For me, however, it was a life-changing day; it was the day I finally had some answers. After numerous doctors and ten years of seriously declining health–the last 18-months of which I spent bedridden–I listened sharply on the phone as my nurse practitioner informed me, “You have Lyme Disease. You’ve probably had it most of your life.”

I was both scared and relieved to hear this news. Scared because, well, I knew I would be embarking on one of the greatest challenges of my life, and relieved because I was no longer in the dark about what to call the mysterious illness wreaking havoc on my body. The list of diagnoses I had collected over the years–from Interstitial Cystitis and Myalgic Encephalomyelitis to Fibromyalgia, and Adrenal Fatigue–all suddenly seemed interconnected. I knew the path to reclaiming my health would require patience, persistence, effort, and faith. Nevertheless, I was ready to confront the illness that had sidelined me for years. Thankfully, I had the support of my loving husband and family.

On that fall morning in October, my nurse practitioner laid the groundwork for a treatment protocol that has slowly helped me to rebuild my life, one tiny step at a time. There are layers of damage to address as a result of going years–maybe even decades–with undiagnosed, systemic infections. I just passed the two-year treatment mark. I am not cured or well yet, but I am healing. I still have ups and downs; I have flashes where it seems like remission is in reach and stages where I can barely lift my head from the pillow. In spite of all the highs and lows along this bumpy road, I am forever transformed by the lessons learned through joy, pain and, self-discovery. Here are those lessons:

Learn to resist the urge to dwell in a negative headspace for long periods of time.

In the beginning, I had spent countless amounts of energy thinking about the past; what I once was capable of doing, and the social life I had prior to my illness. Dwelling on the past immediately ushered me into a very dark, negative place in my mind. Isolated from the things and people I loved the most, the loneliness was heartbreaking. I felt hopeless, lost and frustrated. I grew too fearful to even imagine a future where joy and dreams could exist. Sickness appeared to win and overtake the best parts of me.

I am not exactly sure when the shift in my thinking occurred; but my core, my spirit, the very deepest places of me, eventually changed. I let go of anger and gave myself permission to redefine my identity in spite of the struggles I faced. In contrast, by maintaining my focus on the present and not the past, I discovered more peace within my situation. Slowly, I began to see light and hope in the places once occupied by darkness and negativity. I still struggle, but I see an opportunity for personal growth in the midst of my troubles and I choose to embrace it. I am more content nowadays as I take on these health challenges, and much less likely to contemplate the gloomy side of things.

When one chapter of life closes, a new chapter begins.

Early in my treatment, I came across a wonderful quote from Pastor Brian Houston. It reads:

“Never ever confuse the end of an era in your life as the completion of your destiny.”

The truth of his words gripped my heart with such conviction I have yet to forget them. He was right. There was no denying that an era in my life had ended. Although I grieved those devastating losses for months, I began to hope and affirm a new beginning; a season of healing and anticipation, in my life. I anchored my thoughts to the idea that I still had a purpose and a destiny, and I have not looked back.

Even though I am strained beneath the weight of a controversial illness, I know I still have a unique set of gifts and talents worth sharing with the world. I accept that Lyme disease is my present circumstance. Thankfully, circumstances can and do change. However, the destiny for my life does not. It’s so freeing to write that!

Take time to celebrate the small victories.

Yes, I still have a chronic illness, but I repeatedly test the notion that I can’t enjoy life. I frequently take mental vacations from my illness– from obsessing over it, Googling it, and chatting about it. Instead, I try to celebrate small victories and nurture my adventuresome spirit.

I snap pictures of just about everything I do. That’s become my approach to maintaining a celebratory, productive outlook. When progress seems slow to come, I can look at these visual reminders and see there have been several small victories. These accomplishments help me to combat adversity and renew my optimism.

I hope I will one day beat Lyme disease altogether. I am steadfast in my determination and more resilient than I realized. Ultimately, there are many more healing milestones to celebrate along the way.

My current treatment is aggressive and will continue to be intense for a while. Although someone else could be angry about their experience with chronic Lyme disease, most of the time, I am not. I choose to stay grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. In the middle of all the chaos, there have been moments of immense happiness over the last two years. I live for those moments. They are the fuel for my soul to continue this healing journey.

This Fatigue Tho! Part 1

Full Disclosure: The kind, generous folks at Mitosynergy gave me samples of their products to review, provide feedback, and see if the products improve my energy levels (I already use their MitoLipo product).

Mitosynergycollection

Fatigue–like it’s a miracle I can lift my head off the pillow most days kind of fatigue–is my worst symptom. Even with more than two years of treatment under my belt, this symptom has barely budged. I have already tried dozens of things to try to combat this type of “sick” fatigue. Over the next month, I will document my progress to see if there is any improvement using the Mitosynergy products in my situation.

To begin, I filled out a Brief Fatigue Inventory to better track my progress and note any measurable changes.

Brief Fatigue Inventory:

0 is no fatigue, 10 is as bad as you can get.

1) Rate your fatigue level now.
Rating: 8

2) Rate your usual level of fatigue during the past 24 hours.
Rating: 8

3) Rate your worst level of fatigue during the past 24 hours.
Rating:9

Note: I had horrible insomnia last night, and I was exhausted to the point where I did not know if I could walk to the bathroom.

4) During the past 24 hours, fatigued has interfered with your:

A. Generalized Activity
Rating: 7

B. Mood
Rating: 6

C. Walking ability
Rating: 5

D. Normal work (including work outside the home and daily chores)
Rating: 7

E. Relations with other people
Rating: 7

F: Enjoyment of life
Rating 6

Note: Even in the moments of craziness and uncertainty, I still find moments of joy.

I will incorporate the following products into my current treatment and detox protocols:

1) MitoMelts– a powder that you take under your tongue with mitochondrial-specific nutrients to optimize neuromuscular health. The product tastes pretty good–like a SweetTarts candy.

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2)GreenTeaSynergy Plus– a room temperature tea you sip throughout the day. It has a blend of green tea, noni, and Humic Acid; with Humic Acid shown to have viral inhibitor properties.

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3)MitoMudBath Extreme Cleanse– a detoxifying mud bath with a blend of peat, pine essential oil, wintergreen essential oil, sulfur, and glycerine. This product drains easily, even in an Old, Chicago tub like mine.

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Getting ready for my first mud bath.

Getting ready for my first mud bath.

I will write an update on this new addition to my treatment in the next few weeks. I hope and pray I can make a significant dent in this fatigue once and for all!

 

 

More Than 43,000 Pills Later: A Two-Year Treatment Update

Saturday, October 24th, 2015

Today is my second anniversary since beginning treatment for Lyme Disease and multiple other systemic infections. I dreamed of this day. In my mind, I expected some fanfare, a sign to mark this milestone in a very long fight. In two years, I have swallowed upwards of 43,800 pills, supplements, and herbal tinctures. I make no exaggeration. I expected to be in a different place– to be well by now, back to work, and maybe even thinking about starting a family. However, today is a decidedly ordinary day in my life with Lyme.

In two years, I have spent nearly $40,000 in out-of-pocket medical expenses. I wonder how many other illnesses drain a person of their life savings and leave very little to show for it. I don’t know the answer to this. Maybe there are more, but I can only tell my story– the story of someone trying to crawl her way to the top of the highest mountain. If I close my eyes, I imagine myself reaching the long-awaited summit. I hold out hope that I will finish this climb. I am steadfast in my determination.

In two years, my cell phone alarm has rung approximately 5,840 times alerting me to take my medications. I don’t think I have ever missed a pill. It’s habitual now. Can you be a professional pill-taker? If so, I am one. It’s absolutely second nature. I eat, sleep ( as able) and take my pills– 730 days in a row and counting.

In two years, I have taken around 1,095 detox baths, 1,095 sauna sessions, and 730 coffee enemas. No, you’re eyes aren’t blurry. You read that correctly. Coffee enemas. The funny thing is that I only drank one cup of coffee in my entire life. I really hate the taste.

But, I am willing to try almost anything if it will help. The baths, sauna sessions, and enemas give my body’s natural detoxification processes a boost at removing the toxins accumulated from killing multiple infections and ingesting several medications. It’s a necessary, but inelegant part of recovery.

Some of my medications are harsh on the gut, liver, kidneys and other organs. Blood draws are a regular part of my life to make sure we are not causing more harm than good. As patients, we joke that getting well and managing our symptoms equals a full-time job. I guess it’s not really a joke since it’s actually true. Restoring my health is the most effortful task I have ever faced.

I hear rumors that I am well. Someone mentioned it to “this” person, “this” person then told ”that” person, and finally, “that” person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.

More Than 43,000 Pills Later…

I am not cured, healed or even “well” yet. Despite two years of aggressive treatment, I still struggle every day. To quantify a good day, I function at around 40% of my normal. That means roughly 60% of my day requires me to rest. However, most days are not 40% kind of days yet. This is still better than where I was a year ago. For that, I am happy.

While my pain has decreased, my memory is better and my sleep has improved, crippling exhaustion is the invisible symptom that troubles me the most. This is not the type of exhaustion that comes after working a long day. No, “sick exhaustion” is in a category all to its own. My energy drains and my body becomes too depleted to get out of bed some days. It’s tired from this relentless, intrusive fight. Infections still run amok underneath the surface. Maybe it’s due to the facial yoga exercises I’ve been doing, my new silk, exfoliating mitten or a super healthy diet, but my illness rarely shows on my face. I continue to have ups and downs, moments where it seems like remission is in reach, and periods of going backwards. This cyclical symptomatology is the very real nature of living life with a chronic illness. Thankfully, the setbacks are less severe than they used to be.

Treatment will continue to be aggressive for an undetermined amount of time. I sometimes get asked if I am angry about having to go through this. Most of the time, I am not. I passed the point of feeling like my body betrayed me and grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. There have been moments of immense joy and self-discovery in the last two years. I live for those moments.

Here’s to another 43,800 pills, unexpected moments of joy and healing milestones. Although this journey is sometimes overwhelming, I will continue to pursue my healing with faith and persistence.

Thank you all so much for allowing me to share my story with you these past two years. To my husband, family, friends, and even strangers, your encouragement sustains me along this weary road.

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