Tag Archives: IC

Condensing A Year

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(“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 buy soma online usa 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

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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 order soma overnight delivery 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.

Finding Strength In Two Senior, Rescue Beagles

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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.

DSC01898

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: In the early morning hours of June 24, 2017, we said an unexpected good-bye to Caylie—the sweetest, white-faced old pup on the planet. Our hearts are crushed. We will love you forever, Caylie Bear. Thank you for always being the goofy, rocky-steady dog that brought calm and laughter to our family. Always in our hearts, precious girl. Rest In Peace, my best beags.

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.

No matter how many dogs we have in our lifetime, whether 40 or 50 years go by, you two will always have a piece of our hearts.

Renew Your Sense Of Hope And Optimism This Year With Theses Four Steps

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Please note: this article originally appeared on ProHealth on January 20th, 2016. 

By Jenny Lelwica Buttaccio

With 2016 well underway, many of us have recently reassessed our lives. We took inventory of what worked last year, what we hoped to improve upon this year, and constructed a well-intentioned plan to move forward in a fresh, new direction. Not surprisingly, several of us still resolved to achieve more, get in better shape, eat a healthier diet, be a better mother, father, partner, spouse, friend, etc. However, with Lyme disease and various overlapping conditions in the mix, often, our best-laid plans come to an abrupt halt. Many of us simply don’t have the strength and stamina to exert ourselves so intensely (myself included), which tends to leave us feeling frustrated and disheartened.

If this describes you, go easy on yourself. Thankfully, there’s plenty of time left to challenge the idea that you must muster up the strength to push more and try harder to have a better year. Instead, make 2016 exceptional by honoring your body exactly where it’s at, and accepting your current capabilities. By embracing a healthier mindset, may you feel uplifted and encouraged as you continue to heal. Here are four tips to renew your sense of hope and optimism this year

1. Remember that you are worth the struggle.

First, let me start off by saying–the trials you’ve endured, the tears you’ve shed over this illness, the obstacles you fought so hard to overcome—are not meaningless. Likewise, you battle a set of invisible symptoms on a daily basis that most will never see. Your unwavering determination and strength inspire others to forge ahead. Your vast knowledge helps others. Others see you as more than your illness, and your perseverance motivates them. The road to recovery is long, but please hold onto this certainty for 2016: You are worth all of the effort–all of the struggle– it takes to reclaim your health and life. Always remember, you are a person of great value to the world.

2.Find something therapeutic for yourself.

Raise your hand if you feel completely overwhelmed now and then by the usual, chronic illness rigmarole! Okay, maybe all the time (my hand shot up too). As an occupational therapist, my training taught me that a productive treatment session possesses healing, restorative, and therapeutic qualities for the patient. From a personal perspective, I learned a valuable lesson about a year into my Lyme treatment when I realized nothing felt therapeutic. My muscles held an abundance of tension, and my mind was regularly fearful. From herbs and supplements to medications, it didn’t matter what I put into my struggling body. I always reacted harshly to all of it.

Out of desperation, a quick Yelp search led me to an acupuncturist, named Tina, who had treated at least one other Lyme patient. She kindly agreed to see me that buy carisoprodol cod very day. I was so weak at this particular point in my illness that my husband carried me to her office and laid me down on the table. On our first visit, Tina evaluated me, and we agreed on a gentle treatment plan utilizing massage and acupuncture to relax my nervous system. Upon completion of our first session, I felt different, lighter. It was as if years of tension had melted away. This experience underscored the importance of utilizing various therapeutic modalities to help improve my health. It was a piece of the puzzle that had been missing.

Perhaps a detox bath, a massage, reading a good book, or prayer is therapeutic for you. Whatever it is, do it often. Don’t neglect to include these beneficial elements into your protocol. Your body, mind, and spirit will thank you.

3. Allow yourself to feel happiness.

Most of us believe our happiness is dependent upon our circumstances– we’ll feel happy if we are well, if we have enough money, if we were around nicer people–if, if, if.

I hear these “if” statements often. We place our delight and joy in future pursuits that may or may not ever happen, and we deny ourselves the ability to experience happiness now. In 2016, let’s try a new approach. Release yourself from the thought that you can’t be happy until your life looks a certain way. Instead, notice the little gifts and sweet surprises that each day brings. While it’s true this won’t end your hardships; it will boost your spirit as you walk the long road to recovery.

4. Stop measuring your progress by how others are doing

There is no easy answer as to why some people get well while many of us continue to be ill. What I can tell you is, your journey through this illness is uniquely yours. You will repeatedly hear about someone who got well seeing a specific doctor, using a particular treatment, trying a bold therapy, or taking a special supplement. While it’s good to stay informed of your options, it’s important to remember there is no surefire way to recover. No matter what treatment option you choose to pursue, your body tolerates what it can, and it heals at its own rate. Healing will always be unique to you and your body and different from anyone else’s. So, please stop measuring your progress by how others are doing. I mean it. Stop it. This type of comparison is instantly depressing and will immediately kill your sense of hope and optimism. Rather, focus on how far you’ve already come, because, believe it or not, you’ve already made it a heck of a long way.

I would love to hear what things you are doing to remain hopeful and optimistic in the new year. Please feel free to leave a comment.

Lessons Learned Through Joy, Pain, and Self-Discovery

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[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 cheap generic soma 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.

Exactly three years ago today…

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Looking back at this pic from three years ago, I choked up a bit. I may “appear” okay, but inside my body, a serious war waged on that had me fighting for my life. What many never knew is that I am leaning on Tom because I was too weak to stand on my own. My hair is long and uncut because I was too sick to endure a trip to the hair salon. My glasses were broken because I stepped on them 4 months buy soma 350 mg online prior and was not strong enough to go to an eye doctor. I was bedridden 90% of the time and remained that way for 18 agonizing months. After this picture was taken, I immediately had to lie down. The girl in this picture knew she would fight an invisible battle for the rest of her life– a battle that would rarely ever show on her face. I am so glad this girl was brave, had perseverance and most importantly, never gave up. ?

New Pumpkin Patch Pic

#?TakeThatLyme? ?#?NeverGiveUp?

 

 

 

 

 

 

 

Treatment Update: This Is My Present, Strange Reality

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First, thank you so much for your nice words and comments the past few months regarding my post, A Life On Pause, through Facebook, emails, my blog and elsewhere. Tens-of-thousands of people around the world read it! I am speechless. That is the greatest compliment I have ever received. The article is even scheduled to be printed in the upcoming issue of The Lyme Times, a quarterly journal through LymeDisease.org.

I have been hesitant and excited to write this update. Hesitant because, well, there’s the fear of relapse in the back of my mind, and excited because I finally made a dent in this disease. Lyme is a sucker punch of an illness and has delivered enough low, unexpected blows to me to last a lifetime.

I’ve been treating Lyme Disease and a host of overlapping conditions for nearly two years now. My condition fluctuates between bad and worse days. This pattern has been consistent. My treatment has been intense, occasionally hurling me backward before I can move forward again. Quitting is not an option, though I sometimes fantasize about throwing all my pills in the trash. It’s not easy to take upwards of 60 pills, herbs, tinctures and supplements each day.

This is my life. When the alarm sounds, it’s time to take my medications. I have taken medications in a Chipotle bathroom, the back of a taxi, dressing rooms, the hair salon, the grocery aisle at Target, in the middle of a church worship service, even, on a Ferris Wheel (once).

This is my present, strange reality. And there are still years of treatment ahead.

However, I made a promise to myself early on in my treatment that I would never measure my progress by how anyone buy soma drugs online else was doing. I would choose the treatments that felt right for me. I do not chase after treatments in the hopes of finding a faster fix to my circumstance. I don’t have the financial means nor the energy to do so. I accept that recovery, remission and a better quality of life take time and effort. It’s more work than I could ever have imagined.

But my story begins to take a favorable twist. Those who see me, talk with me or follow me on social media know there has been a subtle shift occurring in my symptoms. I have better days. At times, even a good day:

I felt the wind whip through my hair and the sunshine on my face as I sat by the lake. I shared delicious dinners with long-time friends. I tasted my first Stanley’s donut. I walked through my neighborhood park and breathed in the fresh air. I had a wonderful 4th of July with my mother and Tom and only required a few days to recover. I took the dogs to the park. I danced to an old workout video. I hung upside down from some monkey bars. I even napped! Yes, insomnia that tortured me for years is truly improving. There is such happiness in these small victories for me.

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When I look back on the last year and ten months, I feel proud. I am proud of my attitude through this journey, proud I persevere along the path of recovery and proud of the life I am rebuilding bit by bit. This has been my greatest challenge, but I now know things do get better.

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The Absent-Minded Patient And A Treatment Update

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The other day, I couldn’t find my cell phone. I looked under the bed, on top of tables and shelves and literally under every scrap of paper in the house. It had vanished.

Where could it be? I hadn’t even left the house in a week due to a blizzard and not feeling well from changing up my treatment plan.

Suddenly, I had an inkling, a vague recollection of what I was doing when I last had my phone in my hand.

I ran to the kitchen and threw open the refrigerator door. There, on the top shelf next to a loaf of Udi’s Gluten Free bread, was my cell phone! (This would be the appropriate place to insert an emoticon- the one with the wide-open eyes and a line for a mouth that basically says, “Oops. I did something stupid.”)

As I reached in to grab my already chilled phone (I estimate it had been in there for about an hour) I said out loud to absolutely no one, “And this folks…This is a perfect example of why you too should have the Life Proof cell phone case!”

I’m sure everyone has left their phone in the refrigerator at least once, right?

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I have a legit excuse for my absent-mindedness. I promise.

About two weeks ago, my nurse practitioner decided it was time to intensify my treatment. This buy soma online fast generally leads to a few steps backwards as my body adapts to the changes. This time around however, the changes seemed to have stirred up some old symptoms with a vengeance.

We included the antibiotic, Flagyl, into my protocol to target bacteria that are in a specific form called, “cyst form.” This antibiotic packs a powerful punch and has left me feeling more fatigued than usual and foggy-headed (obviously).

I also said goodbye to my trusty companions of 16 months, Banderol and Samento, and added a more potent herbal formula, called A-L Complex, by Byron White. With an increase in joint pain, muscle spasms and a flare up of Interstitial Cystitis (an inflammatory bladder condition that I have had for 10 years), just one drop of this formula makes me feel like a car ran over me!

One measly drop!

I always say, “If I must go through this, at least it’s winter so I know I am not missing much.”

With today’s temp at a frigid 12 degrees, I feel sorry for anyone who has to leave the house!

Next week, I am meeting with my local Lyme doctor to discuss some strategies to deal with the increase in pain and fatigue I am experiencing. I hope he has some brilliant ideas for me.

To see my full, updated treatment plan, click here.

 

Adjusting To New Holiday Traditions

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In 16 years, not a single snow storm or blizzard deterred me from seeing my family during the Christmas season.

Dating back to my freshman year of college, I would pack the car to the brim and drive to Minnesota. I usually brought a giant pile of dirty clothes to wash at my parents house, as I had typically run out of quarters by the end of the semester. In the years I had my job as an Occupational Therapist, I loaded the car with gifts that I had proudly purchased for my family. When I got married, my husband became part of my holiday traveling tradition also.

By 2011, I was no longer well enough to take those trips.

Christmas with my family is huge. Parents, sisters, brothers, cousins, children, grandchildren and friends all congregate at my Aunt’s house in what invariably turns into a 2-3 day marathon of food, fun and some serious card playing. Games like Canasta, Continental Rummy and Nuts have been a family tradition as far back as I can remember. I grew up playing cards and learned to count while playing poker with my grandmother. My cousin, Julie, is the undisputed card-playing champion of the family. Her hands move so fast, at times they’re blurry.

I miss those days.

Not yet strong enough to endure the Christmas festivities, I find myself trying to create new traditions in Chicago.

In our apartment, we have a small, buy carisoprodol canada decorated tree that sits on our mantel. We tried a 7 foot tree one year, but my beagle tried to eat it so we had to downsize.

Every year, I pose the beagles in costumes just long enough to snap a pic or two. I have a reindeer, a Santa suit and a snowman costume. The costumes are decided based on their cooperation. This year, I had a pocket full of yummy treats so I had their full participation.

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Like last year, my mother will be coming the day after Christmas. We will partake in our annual tradition of driving around looking for the best displays of Christmas lights. We have been doing this since I was a child, first in my hometown of Winona, and now in Chicago. This is one of my favorite Christmas-time activities.

There are moments however, where I realize I am not yet adjusted to my life with Lyme and such an uneventful holiday season. There will be no big, family meal and no presents to unwrap, as every spare cent we have goes towards my treatment. Such quietness seems foreign to me.

Hopefully, I will one day soon be able to enjoy Christmas and the busyness once again!

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Merry Christmas and Happy Holidays from me, Tom, Seven (15 yrs) and Caylie (12 yrs)!

 

Viewing Elephants On My iPhone

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The other day, I was walking at the mall with Tom, enjoying the Christmas displays and celebrating how far I have come. I have been tolerating my treatment plan well and slowing increasing a new supplement called Mito Lipo to improve my mitochondrial function and give me more energy.

“I think I am turning a corner with my health.” I cheerfully said. To illustrate my point, Tom abruptly made a 90 degree turn in front of me while dancing.

The day after my outing however, I was hit with such severe fatigue that I have since been cheap soma online overnight cooped up in my bed for the last two days. I don’t do lying in bed well anymore. I’ve got dreams, ideas and things I would like to accomplish. My mind maybe capable of doing more, but my body does not always receive the memo.

So, here I lay in my cozy bed viewing elephants on my iPhone as I recuperate. I know this is a temporary set-back. Next, I will check in with various members on the local Lyme forum and chat with a few friends on Instagram. What would I do without social media?

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