Tag Archives: SEID

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.

Lyme Ninja Radio: Adding Pilates To Your Protocol

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As you might have realized from my blog, I love Pilates! “Draw your abdominals toward your spine.” “Wrap your shoulder blades down your back.” I hear those cues in my head when I am practicing.

I like the way Pilates makes me feel. I feel energized instead of worn out. I feel lengthened instead of compressed. It boosts my mood and helps me feel like I am getting buy carisoprodol stronger throughout my lengthy, no-end-in-sight-any-time-soon, Lyme treatment.

I recently shared my experiences with Mackay Rippey from Lyme Ninja Radio during a podcast. We covered a lot of subjects, from treatment to herxing, acupuncture to Pilates and pretty much everything in between (even coffee enemas— oh my). Below is the link to our interview. Please take a listen and as always, feel free to leave me a comment.

 

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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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A Bump In The Road: Dealing With An Interstitial Cystitis Flare

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I encountered a discouraging bump in the road last week. In addition to Lyme Disease, I have an inflammatory bladder condition called Interstitial Cystitis (IC).

Marked with bladder pain, urinary frequency and urgency, I have had this condition since 2005. It was fairly well-controlled for about 4 years. I even thought the most difficult days of dealing with IC were behind me. Unfortunately, this flare-up shows my bladder has more healing to do.

As I struggle to understand why I am once again experiencing such severe bladder symptoms, I decided to take a specialized urine test from a lab called Pathogenius. The lab performs testing at two different levels using a culture and DNA detection. My nurse practitioner only recently began working with this lab. Whether or not a patient improves using treatments designed around this testing method, remains to be seen.

My level one culture came back negative. However, the DNA portion of the test detected abnormally high levels of a bacteria I was unfamiliar with called Prevotella Bivia. This bacteria is not a tick-borne infection like the others I am battling. In fact, some amount of this bacteria appears to be present in healthy individuals and poses no trouble to them.

Perhaps my immune system, already suppressed by multiply systemic infections, could not keep this bacteria in check and my bladder became symptomatic again.

That’s my best guess.

After reviewing the results, my nurse practitioner presented me with two treatment options:

Option A is to instill medication directly into my bladder via self-catheterization. A two-week course of medication and supplies arrives at my house from a compounding pharmacy. It’s not covered by insurance, so my out-of-pocket cost would be somewhere between $200-$500. A second, two-week round of the instillations is usually required. For a one months supply, the total cost is between $400-$1,000. This is in addition to the $1,000+ per month my husband and I currently pay out-of-pocket for my treatment.

The pros of this treatment are:

1) It delivers medication directly into the bladder so the antibiotics do not have to bypass the GI tract where it can disrupt normal gut flora or interact with the other medications I am taking.

2) It’s an innovative new approach to treating interstitial cystitis.

The cons are:

1) It’s expensive to do and I question whether it’s sustainable for the average person over a long period of time. Several courses of treatment could be required to achieve maximum benefit.

2) Repeatedly doing bladder instillations carries the risk of contracting a urinary order soma online from canada tract infection, which is then treated with another oral antibiotic.

3) This treatment is so new that it is not yet known what the rate of success is.

A pit in my stomach formed as I did the math. With our current situation, I felt Option A would not be feasible for me. It’s just too costly.

As FOMO set in (Fear Of Missing Out on a treatment that might be THE treatment to finally cure me), I reluctantly asked for an option B.

This option is to add yet another antibiotic to my already rigorous treatment. In this case, it would be the broad spectrum antibiotic, Clindamycin.

The pros of this treatment are:

1) It’s cheap. In fact, I would pay nothing with my insurance.

2) In addition to treating the Prevotella Bivia in the bladder, it also targets the Lyme bacteria in the nervous system.

The cons are:

1) Since this antibiotic kills bacteria from such a broad spectrum and I am already on an aggressive antibiotic protocol, it could increase my risk of developing candida overgrowth or worse, a potentially life threatening GI infection called C-Diff.

2) I need to take this antibiotic three times per day, making it difficult to schedule it around all my other medications.

3) It’s also hard on the digestive tract.

4) Because this antibiotic has penetration into the nervous system for the Lyme bacteria, there is a high likelihood of experiencing an increase in my neurological symptoms as the new antibiotic kills those bacteria.

Truthfully, I  really didn’t like either of the options. Neither annihilating my gut nor going in debt seem like great solutions. In the end, I chose the only affordable route for me. I added the fourth oral antibiotic to my treatment for the next 10 days. Following completion of this antibiotic, I will re-test with Pathogenius to see if there are additional infections.

During this course of treatment, I have significantly upped my intake of probiotics and digestive enzymes to help protect my gut and decrease the risk of C-Diff and Candida overgrowth. As predicted, I am noticing an increase in my neurological symptoms and worsening insomnia has been the most difficult symptom to endure. Luckily, I am already on day 6 of my 10 day plan.

I am hoping this new treatment will shed light on potential causes of Interstitial Cystitis in some people and yield improvements in my symptoms.

I will post an update after I have completed this course of treatment.

Bump in the Road

Things That Go “Tweet” In The Night

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My dear friend, Lisa, sent me a gift this past Christmas. It was a plastic, motion-sensor cardinal with instructions that I could throw it away if it was too annoying.

Cardinals are near to my heart. For a year and a half, I was too ill to leave the house. Through the office window, I spent many mornings watching as a pair of cardinals sang beautiful duets with each other. Their colors were mesmerizing. For me, they became a symbol of hope to remember there was life outside the walls of my apartment.

As I grew stronger and began to leave the house, I no longer saw my two, favorite birds.

Glimpses of them are rare these days. From time to time, I hear their lovely songs cascading from the treetops. I like to imagine the cardinals are bringing hope to someone else.

Every once in a while, a sweet friend or family member will send me a cardinal knickknack as a reminder of how far I’ve come on this journey. I opened Lisa’s gift and excitedly pulled out the small strip of paper that was blocking the motion sensor.

The plastic cardinal began to sing, “Tweeeet. Tweet tweet. Tweet tweet. Twee-e-e-e-eet.”

“This really works,” I thought to myself as I perched the cardinal on the mantle.

Dog number one walked buy soma pills online past and the cardinal immediately began to sing.

Then, dog number two walked past and sure enough, it started to sing again. In fact, dog number two walked in front of the cardinal a few times, each time triggering the motion sensor.

Once again, the cardinal chirped when Hubby came close.

Realizing that the mantle was probably not the right place for this gift, I did what any sentimental gal would do with a hypersensitive, plastic, motion sensor cardinal:

I stuffed it in the sock drawer.

I couldn’t possibly toss it in the trash! I was very touched by Lisa’s thoughtful gesture.

Last night I had terrible insomnia from recently adding some medications to my treatment protocol. Frustrated by my inability to fall asleep, I got up to take the second half of my sleep meds. I fumbled around in the darkness until I had my pill container in one hand and a glass of water in the other. I took my sleep meds and set my glass on the dresser.

As I turned to crawl back into my bed, I heard a muffled sound coming from the top dresser drawer.

“Tweeeet. Tweet tweet. Tweet tweet. Twee-e-e-e-eet.”