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!
Q: I saw some photos of you online, and it seems like you’ve been doing buy soma mexico 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.
[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.
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 order carisoprodol online 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.
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. ?
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.
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.
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.
With some light-heartedness and a twist a of humor, we created two films. First, I “take a bite out of Lyme” in my film by showing my daily regimen of supplements and medications I ingest to help me get out of bed each day (well, some days at least). I have hope that I will one day be in remission from this terrible illness and I strive to keep laughing and smiling through it all.
As my husband, Tom has also been impacted by my battle with Lyme Disease. Ever the comedian, his film demonstrates that sometimes Lyme just ruins things-your day, your month, an outing with a friend or even just a simple cup of coffee.
For me, the highlight of this campaign came when the Real Housewives of Beverly Hills star and Lyme Fighter, Yolanda Foster, commented “Amazing” on my film and retweeted it. Luckily, I was already laying down when I saw the tweet or I might have fainted.
What began as a grassroots campaign started by 5 amazing woman (Julie, Melissa, Özlem, Kim and Lisa), has gained order soma overnight cod some serious traction using social media. Celebrities that have already taken the challenge and showed us their best sour faces include:
Angeli Vanlaanen, Olympic freestyle skier
Ronde Barber, retired football cornerback for the Tampa Bay Buccaneers
Yolanda Foster, Lyme Fighter and Reality star from the Real Housewives of Beverly Hills
Elena Delle Donne, WNBA basketball star
Erin Andrews, journalist and host of Dancing With the Stars
Tom Bergeron, host of Dancing With the Stars
Tiki Barber, retired football running back for the New York Giants
Debbie Gibson, singer-songwriter, record producer and reality TV star
William Shatner, actor
Dr. Oz, health expert and talk show host
When the Challenge aired on Dr. Oz last Thursday, we knew we were making some serious progress with this campaign!
I applaud the efforts of the LDC team and am so proud of the hard work by the entire ?Lyme community. It’s just mind-blowing what a group of people can accomplish. Although it may not always seem like it, PEOPLE ARE LISTENING and PEOPLE DO CARE.
With May being Lyme Disease Awareness month, be encouraged to keep sharing your stories, posting your videos and pics of you taking the Lyme Disease Challenge and challenging others to take it too. Let’s keep this momentum going!
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.
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.
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?
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.
