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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.

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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Blogging Saved My Life

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© Christian Schnettelker

© Christian Schnettelker

Okay, so maybe blogging didn’t literally save my life. It has however been a crucial part of my healing journey this past year.

I recently passed my first anniversary (or blogiversary) on The Lyme Road. When I began the blog, I intended on a place where I could process my feelings and work through the pain and difficulty of a prolonged, gloomy season in my life. I hoped that by writing bits and pieces of my story, I could boost my spirits. I wanted to let go of the past and embrace the possibilities of my future.

My intention was to inspire myself to keep believing that I could live joyfully while enduring a chronic illness. On October 26th, 2013, I pressed “Publish” for my first post. Much to my surprise, friends, family and strangers read the post. Even my very busy doctor took a moment out of his day to view it and write a comment!

I never really considered others might be interested in the story I had to tell. I didn’t imagine people would actually be following my progress! I am honored that my story has served as encouragement to others. I am so grateful to all of you who have continued to read my posts, comment on them, email and message me!

Blogging has been an amazing platform to help me cope and aid in the healing process.

8 Ways Blogging has Been Crucial to My Healing Journey :

1. It boosted my self-esteem.

I had lost a lot of my life to illness. My confidence had been badly shaken. Blogging helped me realize that I still had gifts and talents to share with the world that weren’t dependent on whether I was well. I accomplished a post if I just kept working a little at a time.

2. It gave writing back to me.

When I was a child, I used to spend hours in my room writing story after story with abandon. In growing up, getting older and getting a real job, I lost that passion. Years of text books, heavy with medical and therapy jargon, had stifled my creativity. Even though I may only ever make enough money for a monthly trip to Chipotle, blogging has allowed me an avenue where I can explore my creative side. It feels so good be to writing again!

3. It’s provided me with free therapy.

I held on tightly to painful memories not knowing how to safely release them. Through the power of words, I was able to cry and grieve my heart’s most buy soma online overnight distressing moments. The result has been a profound understanding that although there is difficulty in life, hope can fill me. That’s ultimately what I want for myself–a life filled with hope.

4. It gave me a social life again.

I do my blogging at home while sitting on the couch or lying in bed. I could not have guessed that I would meet such a kind, helpful group of people online. I am lucky enough to have developed real friendships with several of these people. I know that as I connect and network with other bloggers, I will continue to meet some wonderful people.

5. It allowed me to take risks.

I have always loved to take a risk, learn a new skill or try something different. For years, I had to extinguish that desire and make the pursuit of healing my number one priority. I was too weak, too sick and too tired to dream of embarking on an adventure. Blogging has help me to find courage to try something new again.

Shortly after I began writing, I guest posted on a few other blogs. Then, I decided to take a chance and submit a few posts to Mind Body Green, a huge health and wellness website…

6. And blogging showed me that I still have a lot to learn.

The first post I sent to Mind Body Green was not the easily sharable format they use on their website. My second post to them sounded like I was trying to sell something. I realized I needed to take time to learn and develop a writing style that is unique to me.

I have time to make mistakes, learn from them and take more risks.

7. It taught me that support can come from unexpected places.

Of course, I expected that my family and a few close friends would read my blog. What I did not expect however, is that support, empathy and encouraging words would come from other people’s mothers, old high school classmates, ex-colleagues and strangers from around the world! It truly has been a blessing to me and a source of great comfort.

8. It has helped me to see I have a choice.

I have a choice to not let my heart be in turmoil over my current circumstances. I can daily choose to renew my thinking by focusing on good, pure and lovely things. In almost every post I write, I am attempting to illustrate this simple equation:

Focusing on the good equals more peace in my life.

Focusing on the bad equals more anxiety and confusion.

Such a simple formula!

 

MY EIGHT MONTH TREATMENT UPDATE: THE LIGHT IS BEGINNING TO SHINE

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Last week, I had my eight-month follow-up phone consultation with my Lyme Literate Nurse Practitioner. During the past four months, my full time job has been to diligently continue to follow my treatment and detox protocols. It seems it may be helping! For the first time in many years, I am ever so slowly and gradually climbing up the mountain, rather than continually tumbling down it. At this time last year, I was still bedridden and isolated from virtually everyone and everything. I wondered if there would ever be light in the midst of such a dark situation.

Well, the light came. It came in the form of celebrating healing milestones, things I hadn’t done in years. It came when I challenged myself to believe whole-heartedly that there were better days ahead. Most importantly, it came when I stopped telling myself I could no longer participate in life and began taking small risks believing I could live a more abundant life again. Although this journey is still marked with tremendous ups and downs, I am so happy that the light finally seems to be shining!

These Are The Areas Where I Have Seen Improvement:

1) I am still treating my Lyme Disease and co-infections with a combination of medication, supplements and herbal antimicrobials. About three months ago, I was able to achieve taking the full doses of all of my medications. This is huge for me as I typically am very chemically sensitive regardless of what the substance may be.

2) After some trial and error with treating my hypothyroidism, I have found that I can tolerate Nature-Throid. I am slowly increasing my dosage over several weeks but am confident that I will be able to get my thyroid levels into a healthy range by my next treatment update in 4 months.

3) I have been able to make small increases in the supplements that I take to support my body’s ability to detoxify Lyme toxins through a process known as methylation. Supporting the methylation cycle will, over time, boost my immune system and increase my energy. Fatigue has been one of my most intense and relentless symptoms.

4) When symptoms allow, blogging about my journey to wellness has allowed me to connect with some wonderful people throughout the world. I really enjoy writing and am grateful that this passion reemerged in the midst of my struggle with a chronic illness.

5) When I began Lyme treatment last November, I committed to completing a 20-session restorative yoga program as part of rehabilitating myself from months of prolonged bed rest and 4 years of inactivity. For 8 months, I have struggled  with fatigue, aches and pains as I work my way through each session. I can feel that I had gotten a bit stronger. When I am finished with the program, I plan to purchase myself a piece of Pilates equipment called the reformer so that I could begin some gentle resistance training. I have greatly missed having movement and exercise in my life and I look buy pain o soma online forward to the day when I can include it as part of my daily life with some amount of consistency.

6) I will begin attending a monthly Lyme Disease support group in the city of Chicago. Our first meeting will be in August but we already have a Facebook forum online. I am very excited to be connecting with my fellow Lyme fighters as I try to break some of the isolation this illness has caused for me.

These are the areas I HOPE will continue to improve over the next 4 months:

1) A new infection has surfaced in me called, Brucella. It is a difficult to treat infection and the relapse rate is very high. I am fortunate that my Nurse Practitioner will be able to consult with the world-renowned Lyme Disease specialist, Dr. Horowitz, on my case regarding a proper treatment protocol. This will almost certainly require the use of multiple antibiotics taken over a long period of time. I am nervous about this and anticipate that I may take a couple of steps backward in order to move further ahead eventually. I should have my new treatment plan in a few weeks and am hopeful that all the rebuilding my body has done over the last 8 months has prepared me to undergo this treatment.

2) I hope to see an increase in my energy and a higher degree of functioning. I am anxious to accomplish this new healing milestone.

3) I would like to see my thyroid levels reach the normal range, as I believe this will be key in helping me see an improvement in my energy levels.

4) I will continue to address the genetic defect I have in my methylation cycle through specific supplementation and aim to be able to increase them to the appropriate doses for optimal functioning.

5) I would like to see my ability to sleep continue to improve as well as my ability to nap.

6) I want to continue to reconnect with friends, both old and new.

7) I would like to have a noticeable increase in strength and endurance as I continue to implementing a reconditioning program.

8) For two years, my wonderful husband has kindly been my chauffeur to nearly everywhere. I would like to feel strong enough to drive by myself whenever I need to or want to go somewhere. Hopefully, you will see a pic of me wearing a driving cap soon!

My eight-month consultation ended with my nurse saying, “We are on the right track and you have done a wonderful job of combining various treatment strategies into your own unique protocol.” This illness has taken more determination, more perseverance and more strength to continue to forge ahead than I can ever truly describe. I know that my battle is not yet over, but I do find comfort in knowing we are on the right track and I finally feel as though I may actually be beating Lyme instead of the other way around.

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MY FOUR MONTH TREATMENT UPDATE

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This week, I had my four month follow-up via phone consultation with my Lyme Literate Nurse Practitioner. I had spent much of 2012 and 2013 bedridden and unable to perform most of my activities of daily living. I required the assistance of my husband for most everything and I estimate I was functioning around 5% of my normal self for nearly a year and a half. I have written a few posts describing those dark days and grappling with the reality that Lyme Disease was slowing stealing my life. Somewhere between late October and mid November, I reached a point of desperation as the treatments I had been trying with my previous doctor had yielded no results. After reaching out to others in the Lyme community and hearing their experiences, I decided there was still enough hope and fight in me to once again look for a new practitioner to treat me.

Enter Nurse P.  I had known about Nurse P. for several years. Her story is much like mine where her initial symptoms presented as a bladder condition and then eventually progressed to the point where a series of tick borne infections were identified. I felt that since Nurse P. had experienced both my bladder condition and Lyme Disease herself, she would be the right person to develop a new plan of attack for me. I had my first phone consultation with her in mid October. She ordered a series of tests including vitamin D, CD 57, a urine culture, 23 and me genetics testing, Adrenal Stress Index and a blood stain from Fry Labs. By mid November, all of my test results had returned and the picture of what I had been dealing with for nearly a decade, finally became clearer. I was both happy to have some answers and overwhelmed by the long road that now was in front of me.

Nurse P. confirmed an abysmal vitamin D level and a very low CD 57 indicative of the Lyme bacteria, Borrelia burgdorferi, and an immune system that was slowly being drained. The blood stain from Fry labs showed evidence of the Lyme co-infections, Bartonella and Protomyxzoa. Finally, the 23 and me genetics results revealed MTHFR and COMT mutations reducing my body’s ability to perform methylation making me feel even more fatigued and impairing my liver’s detox capabilities. Armed with this new arsenal of information, we were ready to put my treatment and detox plans into action.

Areas of Improvement:

1) I have been treating with a combination of medication, supplements and herbal antimicrobials from the Cowden Protocol. When I began treatment, I had a very poor tolerance for any sort of medication or supplement and would often have a bad reaction or major set-back. Thus far, I have slowly been able to increase all medication, supplements and herbal antimicrobials without any set backs.

2) I have been able to effectively manage recurring herxheimer reactions, an intensification of symptoms buy soma online us pharmacy caused by an increase in the body’s toxic burden when the Lyme bacteria die, throughout my treatment by implementing a variety of detoxification strategies.

3) I have a slight decrease in the burning sensation I often feel in my brain and spinal cord.

4) I notice an improvement in my mood and my sense of optimism.

5) There is a small reduction in my sensitivity to sound. I can talk on the phone, watch a movie and listen to music with the volume at a reasonable level.

6) I am able to get out once or twice a week for a few hours at a time. This generally involves going to the grocery store, acupuncture or the chiropractor.

7) My vitamin D level has now improved to a healthy level.  I am very happy I now have one area in which I can say I am “normal.”

These are the areas I HOPE will continue to improve over the next 4 months:

1) As we increase the killing power for the infections, this phase of treatment is proving to be more difficult to tolerate than the previous 4 months.  Over the next 4 months, I would like to be ble to work up to the full doses of the antimicrobials I am taking.

2) A recent blood test indicated hypothyroidism, which may very well be contributing to my fatigue and need to stay wrapped up in my infrared heating pad 24/7.  Rather than giving me thyroid medication, my Nurse Practitioner believes I may in fact I have an iodine deficiency and that my thyroid is lacking in the raw materials it needs to make adequate levels of the hormone. I hope to have my thyroid in a normal level in the upcoming months.

3)  I hope to be able to increase my b12 levels as they are low as well.

4) I hope to regain more energy and stamina, although this symptoms seems to be among the most stubborn of all of them.

5) I would like to see my ability to sleep improve as well as my ability to nap return.

6) I would like to begin implementing a condition program to try to regain some strength.

My four month consultation ended with Nurse P. saying, “I just want you to know I am so proud of you and all of the hard work that you have been doing. I believe whole-heartedly we are on the right path. You have done all that I have asked of you and more.” I too am proud of the commitment I have made to myself to continue on the path of wellness and hope that my efforts are rewarded with better days ahead.

In an effort to protect the identity of my healthcare practitioner, I have chosen not to use her name. I hope one day, all health practitioners are able to treat Lyme Disease freely and openly without undue scrutiny, but sadly, such is not the case yet 2014.