Happy New Year! May our journeys this new year come with ease and be filled with joy.
In this entry I humbly share with you my TEDx talk titled “Why I Smile...” (run time: 10 minutes). TED revolves around “ideas worth spreading” and in my talk I share an insight told to me by a wise woman in a hospital waiting room - sages often appear in the most unexpected places.
Deep thank you’s for your support. It surely takes a village and I send my gratitude to my friends, family, and my beloved for buttressing me on the adventure.
Sending Light! Happy New Year!
I shared the TEDx stage with wonderful, inspiring women whose marvelous talks are:
WHAT IS PH? (courtesy PH Association)
Pulmonary hypertension (PH) is a rare, debilitating disease in which high blood pressure in the arteries of the lung can lead to heart failure. Read More
SYMPTOMS OF PH
The symptoms for all types of pulmonary hypertension (PH) may be similar, and symptoms are usually more severe as the disease progresses. Symptoms may include:
The gold standard is the Right-Heart Catheterization (this is the only test that directly measures the pressure inside the pulmonary arteries) but evidence for PH may been seen on blood tests, chest x-ray, electrocardiogram, echocardiogram, pulmonary function test, 6-minute walk, V/Q scan. Read More
CAUSES of PH
PH is a complex and often misunderstood disease. There are several main kinds of PH:
heart diseases (aortic or mitral disease, left-heart failure)
lung conditions (tumors, COPD, pulmonary fibrosis) Read More
QUALITY of LIFE
PH is a serious illness that becomes progressively worse and can be fatal. Although PH isn't curable, treatments are available that can help lessen symptoms and improve quality of life.
Complications from PH may include: Right-sided heart failure, blood clots, arrhythmia, and bleeding.
While it can be difficult to manage, many patients develop strategies to cope. Making small changes in daily activities can make a big impact on how patients feel. Listen to your body and rest when you need to. Talk to your doctor about the possibility of supplemental oxygen. With a bit of patience, planning, and flexibility, patients may find ways to work, travel, exercise, and do things the love. Read More tips about Living with PH.
Pulmonary Hypertension 101
With you in wellness,
I was thrilled to have a hiatus from the tick-borne medications tick-borne illness and it seems during that time, Lyme & Friends (Babesia, Bartonella, Ehrlichia) have uncloaked their protective coverings and decided to run around my insides partying again. As a result, many of the previous symptoms have increased in severity (GI issues, bone pain, numbness, tingling, fatigue, etc).
We sold our home in the Rocky Mountains of Colorado, as living at high altitude is not in the cards right now with the Pulmonary-Hypertension and Heart Failure. But...we love our new city-life in Chicago.
My LLMD (Lyme-Literate Medical Doctor) has just prescribed a new regimen of 5 medications, which we use in 2 rotating “cocktails”. The goal is to keep the bugs guessing what is coming and to make the environment very unappealing to them. Perhaps this encourages the microbes stop reproducing and maybe even move out. I am likely to go thru another round of herxing reactions (when the microbial die off causes a temporary increase in symptoms) . Hopefully, the brunt of the herxing reactions (Jarisch-Herzheimer) will be behind me soon and in the meantime, patience, gratitude, and rest are all vital as my body works hard to prevail over the microbes. I choose Wellbeing. I choose to Transcend.
With you in wellness and light,
Have you seen the documentary film “Under Our Skin”? the film’s many honors include:
Semifinalist, Documentary Feature, Academy Awards
Finalist, Audience Choice Award, Tribeca Film Festival
Winner, Best Documentary, Houston Intl Film Festival
Winner, Best of Festival, Fargo Film Festival
Winner, Best Documentary, Sonoma Intl Film Festival
Winner, Best Documentary, Durango Independent Film Festival
"Head spinning... riveting...a rigorously researched and highly thorough piece of investigative reporting." -Lauren Wissot, Slant Magazine.
"The most important documentary to come out this year." -Molly Dedham, Sirius-XM Radio
It has now 2-1/2 months since I moved to sea level from the high altitude of the Rocky Mountains. The benefits (red blood cells carry more oxygen living at high altitude) have now seemed to have worn off and the elevated pressures in my heart and lungs are now back. The squeeky voice is back (distended pulmonary artery presses on the nerve supplying the vocal cord). Despite the set-back, I still have some physically good days, in which I can walk a block to the neighborhood park, and enjoy sitting in the sun amongst the greenery, people-watching.
My husband and I hoped to split our time between Chicago and Vail, but the heart-lungs need to stay put for now. Soon, my oxygen concentrator will arrive providing some rest. Love that thing!
Regarding medications: during my hiatus from the Tick-Borne Illness meds, we have tried several heart drugs to see if we can improve the heart’s pumping efficiency. So far we are are still hunting, but I remain hopeful that we will stumble across something soon.
City-life is agreeing with me a great deal. I love the plethora of wonderful things to do, very kind people, and superb medical care. I look forward to seeing where this new adventure will lead!
With you in wellness and light,
Hello from the wonderfully vibrant city of Chicago - nicknamed the Windy City (named after boasting politicians not the windy weather) and the Second City (now #3 most populated, after NYC and LA). Chicago: kind, playful vibe with loads to do, twinkling city lights, mesmerizing color-changing lake (world’s 6th largest fresh water lake), music, art, and culture galore...oh yeah.
Why Move? We were living in Vail Colorado at an elevation of 8000 feet (note the past tense verb). My heart-lung condition was progressing rapidly and I was on supplemental oxygen a good portion of my day. Although breathing concentrated O2 does not fix my heart or lungs, the oxygen was surely helping me feel better and enabling me to get enough energy to move about the house. The oxygen benefits were short-lived, hence I was on it most hours of the day.
Why Chicago? We had planned a month-long Spring get-away from Vail to Chicago to provide my heart & lungs some needed rest. As my medical condition was physically deteriorating in Vail more rapidly than expected, our short-term Chicago trip has morphed into a longer-term move. How long? Time will tell. Alex still travels most weeks for work and O’Hare Airport is a convenient departure location for his domestic and international trips. I am thrilled to report that, for now, the heart & lungs are happier in Chicago and I am greatly enjoying city amenities, such as the museums, theater, healthy grocery store options, etc.
Medical Team: My main cardiologist is in Cleveland Clinic (much closer to Chicago than Vail), my Lyme & Tick-Borne Disease (TBD) physician (LLMD - Lyme-Literate Medical Doctor) is in New York City, and the rest of my allopathic team is at Northwestern Medical Center in Chicago. I am also supplementing that western approach with complementary medicine modalities, to gain benefits on all fronts possible. I am determined to give my best efforts.
Lyme & Tick-Borne Disease (TBD): Some of my TBD symptoms are still stubbornly prevalent. After a long treatment hiatus (to give the body a chance to rally its own response) I will begin a new protocol in approximately two weeks time. The central IV line was removed in late August, so treatments will now be oral and possibly injections. As is typical, herx-ing (symptom magnification as a reaction to the die-off of microbes named after Jarisch-Herzheimer) is a possibility and we will take it day-by-day handling what-ever comes along, moving ahead. These tenacious bugs are in for a surprise!
Moving On: The theme of life for me this month, it seems to be, is Moving on. Moving on with a plan, without attachment to the outcome. In life, it is so very easy to have an end-goal be so “sticky” that we fixate. Hence, I am actively working on staying flexible, un-yoking goal attainment... Practice, patience, and more practice ;-) Embarking in a new city, of course, comes with some issues, but it is thrilling to have a new chapter unfold. As I look about, I have so very much for which to offer my deep gratitude. I am blessed and my heart sings with glee. I Choose to Transcend.
“It is the set of the sails, not the direction of the wind that determines which way we will go.” -- quote by J Rohn
With you in wellness and light,
Welcome to the first podcast-blog entry of the New Year! For the past 2 years, I have been posting video journal entries of my Late-Stage Lyme Disease treatments at the end of 2012 announcing my new diagnosis of Pulmonary Hypertension with Left Heart Failure. I am posting a written blog as before, but also an audio podcast this time.
In the audio podcast to the left, I read “1 to 5”, which is a journal entry I recently wrote about a new diagnosis (the text is below). When dealing with a daunting prognosis, we remind ourselves that we CHOOSE to continue living a whole life filled with wellbeing, in the face of formidable unchosen challenges and despite statisticians mathematical models. A long life filled with many unmindful years does not guarantee happiness, vitality, fulfillment, lack of depression, or lack of problems. What does provide the opportunity to thrive, though, is mindfully choosing to live in wellbeing despite the daunting issues we face. Many people over the centuries have investigated the facets of happiness and wellness. This is not a new concern for humanity. In his book “Flourish”, famed psychologist Martin Seligman*
out-breath: I am peaceful (repeat 3 times)
Wishing you much calm, ease, and peace in the midst of life’s busy-ness!
“A Lyme Treatment in Scottsdale”
May your life’s journey be filled with ease and joy!
“Relapse and Snafu”
It has been 1 month since the IV Hickman Catheter was removed, from which time I have been on a treatment hiatus. The ability to shower has been phenomenal, but I am truly missing some the supportive supplements I was administering. Now the ‘bugs’ seem to be detecting a safe environment for themselves, waking up, running around, throwing impromptu galas, and so symptoms are now relapsing (the usual litany such as joint pain and stiffness, bone pain, limb numbness & tingling, fatigue, reduced stamina, gastro-intestinal issues, vocal cord & esophageal changes, etc). Soon, I am scheduled to attend a two-week intensive Lyme treatment protocol based on the biological medicine concepts of strengthening the immune system.
I am extremely fortunate that my flexible wonderful job allows me to continue managing the business and adjusting my work-load to the meet the ever-changing day-to-day situation. I have physically slowed down a great deal, but still enjoy time teaching yoga and meditation.
A snafu arose this past week: my latest test results indicate that some of the current respiratory and cardiac symptoms may be related to tissue deterioration post-cancer treatments instead of an effect of Lyme/Tick-Borne Disease. There are upcoming medical appointments and lots of further testing to determine the extent of the issues in the heart valves and the artery supplying the lungs. Time will tell and we remain optimistic and hopeful.
Recently, my spouse has been traveling around the world on business a great deal, enjoying his projects and racking up the frequent flier miles. We continue to work towards quality time together savoring each other’s company, filling our moments with happiness and fun, while adjusting our activities to the current day’s condition.
In my mind’s eye, I am whole and complete, and in my heart I am filled with deep gratitude and unconditional wellness.
Wishing you a radiant life’s journey filled with inner peace and bliss!
“IV Line Infection”
Well, it finally happened...on Saturday August 25, 1 week shy of 18 months after my Hickman IV central line was placed in my heart & chest wall, my intravenous central line decided to take a break (this is not uncommon, as IV lines are not designed for especially long-term use). I had a staph infection and the IV catheter was removed in the emergency room of Vail Medical Center. Fortunately, the surgeon on-call was well-versed in this type of IV catheter removal and our small resort-town’s ER was not at all busy, so I received superb care.
Any kind systemic burden, such as an illness, medical procedure, infection, busy schedule, lack of sleep, etc, may precipitate a relapse of Tick-Borne Illness symptoms. Thus, my current regression is not unexpected. Symptoms include most of the ones I previously experienced, but a more moderate version: musculo-skeletal issues (including difficulty walking, challenge holding things in my hands and typing this entry on the keyboard), neurological issues such as numbness, tingling, weakness in the limbs, gastro-intestinal complications, voice changes, esophageal chocking, physical exhaustion, and the list goes on. We sincerely hope that soon my compromised immune system kicks in, assisted by the encompassing integrative therapeutic regimen, so I can soon resume more activity. I feel strongly about the benefit of broadening my attention on many of life’s wonderful aspects, so that chronic illness and its symptoms does not become a sole spotlight. I can feel sick whether sitting on the couch confined by the familiar four walls or I can choose to surround myself with natural beauty, wonderful people, and other healthy beneficial experiences. I truly believe wellness is a state of mind, not of a condition of the body.
I continue to work most days (much gratitude for my flexible job) and also travel monthly around the USA studying Yoga Therapy. I currently volunteer my time teaching yoga and meditation, hoping to help spread peace and equanimity.
Just before the IV infection, Oleh-Alex and I enthusiastically celebrated our 23rd wedding anniversary on a superb trip to the picturesque coastlines of Cape Cod, Martha’s Vineyard, and Nantucket. We were especially interested in the depth of Nantucket’s history so well-preserved from the 1600s-1700s. The region’s island scenery was spectacular with quaint lighthouses dotting the grassy sand dunes of the sublime beaches. Although walking was challenging for me, I found I could ride a bicycle and so, we packed our beloved tandem bike and off we went exploring and having fun together. We manage to modify our activities to my ever-changing symptoms, but I believe fun, exercise, and the endorphins created from these experiences are one of the keys to creating our own wellness. Wishing you a splendid journey filled with endorphins !
Sending love and light,
“The Tenacious Babesia”
2 more months of daily IV treatments are ahead and then we remove the line (but treatments will likely still need to go on for several years). At the 18 month-mark, the risk of blood clots in the intravenous line increases significantly so that risks usually outweighs benefits. Hence, barring any serious significant medical developments, at the end of September I have an appointment scheduled to remove the IV line. In the meantime, I am continuing the comprehensive integrative regimen encompassing both western allopathic medical treatments (IV and otherwise), along with a litany of complementary plus Ayurvedic & Chinese herbal protocols. We are tackling the Lyme & Friends* from all angles! Once the central IV line is removed, I will move to an oral and intramuscular injection regimen and then we wait-and-see how long before we put in another IV line. So, in honor of the current IV line removal, we are working on plans for a very special celebratory trip. The truth is that due to to the long standing serious disease, we have been told to expect a multi-year treatment process in order to reverse the most significant symptoms, but some symptoms are likely to be life-long issues.
The current medical issues are mostly related to the Babesia* and include very significant fatigue, marked GI issues (still ‘eating’ mostly liquid meals), muscular/joint pains, choking. My hoarseness is intermittent, but my apologies if the video podcast in this entry is challenging to understand. We hope with time, my vocal cords will make their full return.
I am so pleased that in the midst of the current treatments, I was able to complete my Yoga Teacher Training program, with a final class in Palm Springs in July. I am continuing my studies in Yoga Therapy for one-on-one customized yoga sessions, but now I still greatly enjoy leading yoga classes to sharing the healing benefits of yoga and meditation. On the ‘day-job’ front, I am pleased to be able to spend more time at work. So overall, my days are very full balancing work with leisure, physical & mental activity with healing restorative time, and fun with peace and equanimity. I am truly grateful for the multitude of blessings in my life. Wishing you a splendid journey filled with bliss!
Sending love and light,
“Babesia is throwing a party”
I was determined to beat the Babesia in this upcoming 6-month protocol and plow-through the various medical side-effects, but...2 weeks ago my eyesight was significantly affected. Hence, I am now on a medication-hiatus, but still infusing various supplements through the IV to help build up my system. Since I am not on the anti-Babesia protocol, those clever little bugs have detected that the coast is clear and so they are throwing a wild party inside me of wrecking all kinds of havoc (some of the symptoms: overwhelming fatigue, hoarseness, liver and kidney issues, abnormalities in red blood cell and white blood cell counts, thermoregulation difficulty, muscle pains, etc). We are now pausing, regrouping and mulling over treatment options.
Good news is I am now able to eat small portions of food. After 12 weeks of mostly liquids, my GI system improvement is indeed extremely welcome.
I am currently keeping my work schedule at my flexible job, plus soon traveling to complete the Yoga Teacher Training. In addition, we are doing lots of arm-chair travel planning for a post-IV removal adventure.
There is such abundance in my life and so I pause to offer my heartfelt thanks for the bounty. Wishing you a splendid journey filled with bliss!
Sending love and light,
“I am Walking!”
I am thrilled to reports improvements in the leg bone pain, so I am now more mobile, standing and walking for longer periods of time. Our trip to San Diego’s Safari Park was very fun and as I was not in a wheelchair on this trip, it was much easier to manage. (I am truly grateful for the wheelchair and the extent of handicapped accessibility in this country, but...standing on one’s own working legs is indeed priceless!) The SD Safari Park is a splendid organization focused on wildlife conservation. What I especially loved was that the animals roam free while people are confined to jeeps/trucks -- just like I think it should be!
With the improvement in my stamina and clarity, I find that I am keeping a bit more regular schedule at work (Ambassador Translating) as I am supported by a splendid determined team. On the personal front, I am nearing completion of the Yoga Teacher Training Program and towards that end, I have traveled to California twice this past month (San Mateo and La Jolla) for yoga workshops with wonderful kind, compassionate fellow-yogis/yoginis. Alex-Oleh met me at each locale, as we piggy-backed personal R&R time together, onto my workshop trips. He travels so much for work (weekly business trips domestically and internationally) that I am sometimes baffled that he is willing to travel during our personal time, but I am grateful for an outstanding companion (as the youngsters say MFEO meaning: made for each other).
I am still happily volunteering meditation-yoga classes in our community. It is often said when volunteering time to others, one gets so much in return and this is very true for me. This group brings me joy.
My diet has been mostly liquids for the past 10 weeks, as I am not properly digesting solid foods. I am grateful for the powdered medicinal supplements which I reconstitute, but am very eager to eat solid foods soon.
My current medical protocol is aimed at reducing the Babesia* load in my system. Babesia is known to be especially challenging to eradicate hence we are particularly focused and determined to keep at it, with rough spots likely in the next 2 months and an overall protocol of 6+ months.
Sending deep gratitude to my beloved life partner, warm family and friends, health care practitioners, work colleagues, and students for the generous support and understanding...And appreciation to the multitude of meds and supplements that slowly work their magic giving me back function. Each evening as I lay my head on my pillow, I give thanks for the bounty in my life.
Wishing you a splendid journey filled with bliss!
Sending love and light,
“6 more months”
My last Lyme Physician consult was great and Oleh-Alex was able to join in this important visit. We have decided to keep me on IV treatment for another 6 months. The trial round of oral meds were not as effective as we had hoped, but the IV is slowly and steadily moving me in the right direction. In the short-run it might have been nice to have the Central Line removed, but of course, I am in it for the long haul and will do what I need to do to attain my goals.
My symptoms list is indeed very encouraging as I am no longer experiencing serious confusion. When I am fatigued, then the brain fog rolls in like the early morning weather pattern on the California coast. As time ticks away, I hope to make a bigger and bigger dent in the list of symptoms. Currently my short-term goal is to start eating solid foods, as I have been on a mostly liquid diet for 6 weeks - juices, medicinal powders, pureed blender food. I am experimenting with a few supplements with the hopes of calming down the bugs in my digestive system, so I am ready for the May 10th start of the intense Babesia treatments. (Babesia is a malaria-like red blood cell parasite and my treatments for this condition are more lengthy and complicated due to my lack of spleen, from my teenage cancer).
I am focusing on a healthy balance between work & play and am so very grateful for the flexible schedule at my work which accommodates my Lyme fatigue and other symptoms. As part of my own wellness, I am continuing travels across this great land to further my Yoga Teacher Training studies and I am fortunate to be able to share the healing benefits of yoga and meditation in classes in our community.
We are all a deep well of strength and happiness - we need just tap into that cascade of positivity.
Wishing you a splendid journey filled with bliss!
Sending love and light,
“Happy 1 Year IV Anniversary”
Last week I celebrated the 1-year anniversary of my IV Central Line insertion. One year! I am very grateful for the line and the medications and supplements I infuse thru it several times each day. Yesterday, in a way, I was tested to see how much I still truly wanted the line...I developed an “out of the blue” clot in the line (for those unfamiliar, this is not a desirable predicament since the line goes directly into the right atrium of the heart). There was a 100% blockage and like cement nothing was able to move in our out. Two doses of CathFlo, the “drano-like” catheter clot buster, did not help. Monitoring breathing during such an incident is paramount. Since I was breathing well, we suspected the clot had not yet released into the heart. Hence, we decided to risk waiting it out until morning before pulling the line. So this morning, after much coaxing, cajoling and talking nicely to the catheter, I was able to unclog the line without obstructing airflow in the bronchial tubes! Dance of joy...quick text with the good-news to Alex as he boarded another long trans-Atlantic flight and emails and phone calls to concerned family. Now with the line seemingly open once again, I can continue my daily infusions and I am even more grateful my central line and its important work.
The medication I was infusing a few weeks ago (IV Zithromax) seemed to be doing excellent work inside my body, but after 10 days I developed tinnitus (ringing in the ears). Tinnitus is a known potential side-effect of Zithromax, but not wanting to damage my hearing any further we discontinued that medication. We hope that someday the ringing disappears, but for now, I am learning to adjust to the noise and use it as a reminder to stay in the present moment.
The new replacement IV is Rifampin and after one week it seems to be helping reduce the substantial bone pain and I am experiencing a reduction in the overwhelming fatigue, confusion, and brain fog. With these promising signs of benefit, tomorrow I begin a double dose of this drug to determine if the medication’s side-effects (headaches, nausea, vomiting, GI issues, etc) balance the benefits.
I believe an important part of my healing process includes having fun. So for fun, I am working towards my Yoga Teacher Training certification. This entails lots of travel throughout the USA, attending classes and workshops surrounded my many kind and like-minded individuals. Of course, I am extremely tired after the travel and workshops, but I am also greatly enjoying these studies. It is a balance as I surely do not want to wait until I feel better to truly live life. I am immensely appreciative for my flexible and accommodating work schedule at my job - it allows me to feel productive, while having time to rest, volunteer, and travel. Currently, I volunteer teach Ageless Gentle Yoga, Breathing, and Meditation to people who are in some way physically limited, be it by age, disability, or medical condition. My own arthritis and limited mobility are on obvious plus ;-) and what an appreciate group. I am doing my best juggling my activities, while still scheduling lots of time for rest and recovery. I accept my current circumstances and without attachment to end-results I am working towards a time that the Lyme goes into a partial remission. I continue my laser focus: balancing my body’s need for physical rest and my mind’s delight in truly living fully in the present. Life is here for us every moment - let us seize it and live with intent and verve.
Wishing you a splendid journey filled with many moments of bliss!
Sending love and light,
As was expected, during the last portion of the current 5-week antibiotic hiatus, the microbes have become complacent and come out of hiding. [Although the antibiotics and herbs kill the weaker microbes, some of the more clever bugs encapsulate in an antibiotic-protective coat when they detect antibiotics and then hibernate waiting it out in safety. When the antibiotic levels go down, these clever critters then disrobe their coats and start a system-wide wild party.] I suspect that for these bugs now, the music is blaring, the partying is intense, there is a boisterous conga-line, and an all-around good time. For me, though, that means some significant symptoms have returned. [Symptom list for those interested: arthritis-like joint pains/swelling, bone pain with nodules on the bones, tingling/numbness and weakness in extremities, blurry vision, fatigue, word search, brain fog, confusion, headaches, neck stiffness, significant gastrointestinal issues, body temperature regulation issues, rashes, etc.]
Based upon the current symptoms, we can guess which species of microbes are present and disrobed. Since they are unprotected and unsuspecting, they are now more vulnerable to medications. So, the IV meds are on their way arriving in a few days. Until then, as I write this I have just begun an oral antibiotic regimen to hold me over. In a few weeks time, I add 2 more meds, for a very intense triple-hitter intravenous cocktail (sounds yummy, I know ☺) and supplementing with a thorough oral and IV herbal/supplement regimen. These bugs won’t know what hit them!
Current thinking is that I may have my central line in place for 6 more months (totaling 18 months) before we pull the line. During this next half-year, I may take a month-long hiatus between each antibiotic round. Each hiatus will help us determine what critters are still prevalent. Although we would prefer to rid the body of all the microbes, that is highly unlikely in reality. Rather, we plan to reduce the microbial numbers to a level that my immune system can better manage. I will likely be ‘co-habitating’ with these critters for a long time.
The symptomatic roller-coaster is a very normal and to-be-expected part of the Lyme/Tick-Borne Disease (TBD) journey. Sometimes you think you are now better and the next day you realize there is still a long way to go. To some, it may seem like “Hey, you have been on treatments for 11 months, why aren’t you done yet?”. The reality is that for long-standing Chronic TBD, treatments of 3 - 5+ years are not uncommon in order to get the microbial numbers to more manageable levels. The key is to keep focused on the goal and enjoy life throughout the process no matter the current predicament.
Onwards and forwards I move in this very interesting, marvelous, challenging, and joyous journey called Life. The bugs are once again going to be shown “the door”. With each round, I hope they realize how very stubborn I can be when I put my mind to something (my family can attest to my stubbornness ☺) ... and let it be known to the microbes: I am resolved to win this war!
Wishing you a splendid journey filled with many moments of bliss!
Sending love and light,
“Please Pass the Drano”
10-½ months...I can now report that I am on the other side of illness. Of course, there are the daily and weekly issues which regularly arise, but overall I am experiencing more health. Although my body is still often fatigued and tired, my brain is now clearer and less fuzzy. The body and mind negotiate a daily compromise regarding my activities, but life is surely moving forward.
Two weeks ago, my IV Central Line became a bit clogged, not unlike an old drain filled with debris. A pipe must be cleared before it can drain smoothly and so, too, we attempted a “drano”-type product (called CathFlo) especially designed for IV lines. Fortunately it worked well enough, so that the crisis is now over and my line can stay in place. Phew!
According to protocol, I am now on another IV antibiotic hiatus for 4-6 weeks. During this time, as the microbes wake up and have their party in the antibiotic-free zone, I will experience more of the familiar old symptoms. The exact combination of symptoms gives us insight into the nature of the microbial population still in existence and provides us the information needed to choose the next IV medication.
I am now walking unassisted (although still careful not to be vertical for too long) and so I have embarked on a Yoga Teacher Training program, entailing monthly travel around our splendid country. In the next few weeks, I begin teaching classes on meditation and gentle yoga in our Valley. I look forward to sharing meditation’s and yoga’s gifts. They have been invaluable support in my own journey and perhaps may help others, as well.
Although I truly hope for and vehemently work towards full recovery, life is here to be sincerely seized and mindfully savored every moment no matter the circumstance.
Thank you for keeping me in your thoughts and I wish you a deep inner peace, heart-warming love, and boundless joy!
Sending love and light,
Excerpt from my journal... “Ready to Receive the Broadcast” © Christina Danyluk
It is said "Life is change" and yet we often seem comforted by the delusion of stability. Life offers us gifts and then without notice can take them away, eroding our security. Why then cling so vehemently to the illusion of permanency? Is it not more useful to ride the wave and discover where it leads instead of standing upon the shore cursing the water? When we allow the flow of life to move in it's rhythm, each of the challenges we face, can bring us closer to our inner truth. We can simultaneously throw ourselves into the experience, but also like a hot air ballon we can hover above the landscape of our existence mindfully observing the true essence of our being.
I want to learn from you my wise inner Teacher, but I have often strained to hear your whisper above the cacophony of this world. I have sometimes stumbled along the journey losing my way in the darkness. When fear overcame me, in my venerability I curled into a protective ball, watching, waiting, and wondering. It is then that I remembered to look for you deep within. I listened intently and there you were. I heard your murmur guiding my way helping me chose a path in the road. You showed me that learning comes from all experiences and no matter their label, each brings with it an important message. So accept the challenges and opportunities, you say, for learning comes in all shapes and sizes, and even when we are uncomfortable. Along with your wisdom, you offer grace for the asking, helping us all move with more ease thru the quagmire of uncertainty.
And so it is now with a unique amalgam of calm and trepidation that I depart the dubious shore of perceived safety and wander into the unknown ocean. When I lose my way, I often rely on the sextant of insight and the celestial bodies of truth to guide me. I endeavor to allow new experiences to disrobe my being and ever-so-slowly I shed another murky layer until I reach my essence. We are one with all in our midsts, like the water droplets are one with the wave. This is my glorious, challenging, and wondrous journey, to allow the dissolution of my egoic layers, discover my truth, and touch the joyous core bubbling with the nature of authentic existence.
Oh life so mystical and wise, please bring your lessons with softness, as I am a beginner. Know that I am here in the present moment, with my signal tuned into your station, ready to receive your insightful broadcast.
The past month has provided me 10 wonderful days - I danced, I played, I sang, and I frolicked...and then I needed to rest and recuperate after all that fun ;-) It was indeed spectacular to be mentally coherent and physically stronger...especially after the experiences of October-November. Of course, I was 100% not back to my old self, but I felt much better than in the past 3 years.
A few days ago, the Lyme roller coaster took a concerning dip, creating a relapse of symptoms. This change is likely induced by the pharmaceutical IV meds - on one hand the meds are very helpful, but on the other hand, they are not clearing quickly enough from my body tissues, hence causing ‘issues’ with their build-up. Thus, I am currently on a multi-day IV antibiotic hiatus, until the next cycle of blood work indicates my body is ready for the next round. Until then, I continue to supplement with the the herbal-vitamin-mineral IVs which are part of my protocol, with the intention of helping my body recover quickly. I am maintaining a continued healthy lifestyle, lots of rest, nourishing foods, and targeting my attention on my healing...so I can frolic once again.
An important part of my daily routine, are exercises balancing my inner and outer body. I continue with my long-standing meditation, qigong, and yoga practices, as well as therapeutic physical exercises, to stay limber and adaptable..and ready for life’s adventures. We are tentatively making plans for a few interesting non-medical ;-) trips next year and I plan to feel strong enough to study therapeutic yoga. We remain doggedly hopeful that 2012 will be the year in which I show the microbes who is boss! Ah, the journey of life is filled with many unexpected curves in the road, but it is indeed quite the ride!
Thank you for keeping me in your thoughts and I wish you a New Year filled with deep inner peace, heart-warming love, and boundless joy!
Sending love and light,
Note: The journal excerpt below entitled "the bridge to awakening" is my reflection on healing contemplative time, be it sentient moments on the yoga mat, in the stream of chi, or on the meditation cushion. These restorative hours are vital to staying centered and balanced in my journey to wellness. Call it mindfulness, prayer, or the flow, it directs the internal compass, guiding the way, allowing us to cross the bridge of transformation, reshaping life’s daily issues into true boundless bliss.
In this podcast entry, I share with you a deeply personal excerpt from my journal (see below). Thanksgiving week is upon us and I have so very much for which to be grateful. I am a very lucky lucky girl! Thank you immensely for visiting and sending your good thoughts.
May health and happiness be yours!
“Hope’s Chuckle” (excerpt from my journal) ©Christina Danyluk
I breathe in the still tepid air, but this once simple action is now quite labored. My body is in pain so immense, I almost cannot fathom its burning depths. And yet in these circumstances why am I chuckling? I shudder and wonder if this is the moment in which I have fallen off the deep end and crossed into lunacy. Or is the divide between sanity and madness quite nebulous? Perhaps the two extremes are not separated by a solid firm line at all, but more by an ethereal cloud-shape, which is never quite in the same place moment-to-moment.
What has become normal now for me, many may consider crazy, absurd, or ludicrous. To what ends am I willing to go to save the shreds of life inside me? That is a vital question I have pondered not once during the past several years. The reason I chuckled during today’s typical challenges is that I have indeed come a long way, from a year ago, when swallowing, eating, and breathing seemed not mine to possess for much longer. I think of the sad conversation we had at home not so long ago: where might we place the hospital bed and ventilator. I pause and reflect. Yes, I have indeed come a long way and I am immensely grateful. I truly believe my experiences have prepared me to look reality squarely in the face and accept life’s course. What I learned, though, is no matter how much I practice accepting today’s reality, there is an ember inside me yearning to live a normal life. It is like homing beacon keeping me going, helping me fight through the intense treatments striving to get better, directing my course and focusing me on the end goal.
What is normal in my house now, you may wonder? Vomiting in cycles, 12 hours on and 12 hours off, for weeks at a time. As I lie on the bathroom floor almost too weak to move, I keep a phone nearby, lest my family not be able to reach me and worry. My bones burn in pain so intense I yearn for a huge fire extinguisher, for surely there is a five-alarmer in our midst. And then come the waves of confusion. When I get overly busy and need to juggle a few things in my head, my brain decides to take a hiatus and conducts a system-wide shut-down. All I can do is sit and wait for the eerie void to pass. I wrap my chilly body in a thick blanket and perhaps in an hour I will remember where I keep my clothes. Joint pain, like thick hot molasses, slows my movements. My head feels as if it will explode, like a 4th of July fireworks display, catapulting my insides into the world. Fevers come and go, I am hot and cold, and the household thermostat is being exercised profusely. I can often describe an item in great detail, but not remember its name, such as “the thing you use to pick up soup from a bowl” but the word “spoon” escapes me. The tingling, numbness, and shaking in my extremities means I often make a mess in the kitchen preparing the most simple meals. I buy dishes and glasses quite regularly, to replace the ones that broke as they slipped thru my weak grip and numb fingers. Some of the typical household items in our cupboards have now been replaced with intravenous supplies and other medical paraphernalia, all hidden from the world’s view by a thick opaque cabinet door. The occasional urinary incontinence unfortunately still comes unannounced. Gastrointestinal distress and constipation are severe so that morsels of food are carefully considered before being ingested. Yes, these are all normal aspects of my life. Of course, this litany of symptoms waxes and wanes, each with its own rhythm, akin to a symphonic production, in which each movement proceeds at its own cadence...fortissimo (very strong), pianissimo (very soft), or sforzando (with forceful sudden accent).
And the treatments…there are the moments I wonder when they will end or even if they will work, but that thought is almost too frightening to ponder. Is it normal to have a hose sticking out of your heart thru the chest wall to accept daily poisonous quantities of pharmaceuticals? The opening has to be kept sterile, clean, and completely dry, lest bacteria enter and a deadly infection ensues. This is not melodrama, this is reality. When I put in all on a scale, though, I decide that in order to have a future at all, in the near-term, these treatments are what I truly need. The fierce regimens do not assure me of a future, but they do buy me the possibility of one. And so with enormous hope, I accept them along with their consequences and side-effects. In a few years time, as knowledge progresses, these protocols may seem barbaric, but for now this how “state of the art” looks and this is my “normal”.
But what is “normal” anyway? “Normal” might look like some glossy magazine cover, heavily manipulated in post-processing and thus unattainable by us in the real world. “Normal” may be a pretty perfect vision we have in the mind’s eye, which is completely incongruent with current circumstances. Perhaps it is best to drop the concept of “normal”, because after all, how can any of us measure up? Reality is what it is and not what we wish it to be.
So, in order to move forward, I must accept my total self, as I am truly and authentically today - accept my body, which is doing its best under the most trying of circumstances; accept my mind even in those moments when it all seems too hard; and accept the immense daily challenge of demonstrating to those enterprising adaptable microbes that I shall indeed prevail. No, this is not madness or insanity. This is balancing the acceptance of my current circumstance with the indelible vision that it will soon change, and the enduring faith that I have the daily strength to make it happen. I continue to focus on the things I can do now and relish in the joyous moments that abound, but I also clearly envision the plethora of things I will do and experience when my situation improves. Life is here every moment of every day, waiting for us to claim it, so let us not postpone truly living. And so, once again, I share a knowing chuckle with my precious friend named Hope.
Lyme: the Roller-Coaster
The past month, since my last post, have indeed been a roller coaster of symptoms, nausea, fungal intestinal blockage, immense fatigue but lack of sleep, et al. Some of my old symptoms have flared, such as numbness on my right side, rashes, bone pain, etc but I have a new significant symptom: muscular tremors. My sister-in-law has a terrific idea: I should start wearing only black shirts, so when I spill and drop it all, I won’t need to keep changing clothes.☺ Until now, I hadn’t realized my penchant for pastels. ☺
Currently, as my physical condition has progressed, I have stopped all antibiotics, to get a better sense of the current reality (this particular class of meds can mask some symptoms...but don’t worry, I have temporarily stopped the antibiotics per the doctor’s request). I am still on an anti-malarial treatment for the Babesia (mepron), though (see link to the recent NY Times article about Babesia).
I am focusing on getting thru the next 2 weeks, keeping a detailed list of all symptoms as they occur, and will be heading to see my Lyme Doc so we can plan the next phase of my IV treatments. Of course, this current state is disappointing, but I am honestly doing all that I can to keep well, rested, focused on my goal, and have some laughs along the way, as that is all very healing for the psyche and for my little army of all important White Blood Cells! I have so much for which to be grateful on a daily basis.
I have a crisp clear vision in my mind’s eye: I am symptom-free and cycling with my beloved on our tandem bicycle thru a charming countryside, past rolling fields of colorful flowers. An old stone castle sits high up on the hillside overlooking the medieval town. This vision is so vivid, I can even smell the flowers and feel the sunshine. And so, I am doggedly working towards making my vision of being active once again a reality!
Thank you for sending your good thoughts and right back at you!
May health and happiness be yours!
As predicted, the past 2 weeks have been indeed quite challenging. The intensity of this protocol is normal and expected as the medication is penetrating the cells of my body to find the hiding, belligerent microbes. With the overwhelming nausea/vomiting, fatigue, and body pains, I have spent much time between the couch and bathroom, with little time left for work. One of the ironic side effects of the medicine is insomnia and so the fatigue and insomnia make for quite interesting bedfellows.
Although I often have to just keep my focus on an hour at a time, to get thru the day or night, I am very cognizant how fortunate I am to have access to this treatment protocol with the possibility of improvement after these 10 weeks. My IV therapy will still likely continue into next spring or summer, but this current phase is requiring me to dig deep and access my resources to “go to the mattresses”. Although it’s normal to have moments of doubt, such as “can I really handle this?”, inside every fiber of my being I truly know that each of us is stronger and more powerful than we think. We have it in us to overcome the situations we face and learn to “dance in the rain”.
It’s important to still have fun, so we spent a long weekend in Las Vegas (it is a bit over 1 hour flight from Denver) and regardless of my currently weakened state, it was good to have some fun. We went to see 2 shows and saw the sights. It appears some bystanders may have been mistaken my medically-induced nausea for too much “Las Vegas-style partying”. I guess it’s true that the microbes inside me have partied for too long and they have now been provided an unequivocal eviction notice. I envision the utter decimation of all the microbes! Vamoose!
May health and happiness be yours!
Embarking on a ‘bulldozer’ protocol...shhh, it’s a surprise attack
Due to the sustained relapse of some of my symptoms (such as the intense bone pain, which prevents me from standing longer than a few minutes, intense fatigue and body pain after mild movements, swallowing difficulty, and stuttering, etc, we are now starting the ‘bulldozer protocol’.
The new medication, named Tygacil (an IV Tygecycline), is going to target the inside of my cells (intra-cellular) where the microbes are hiding. Until now, the meds have been targeting the microbes when those microbes were traveling between cells (inter-cellular), but those meds were not strong enough to penetrate inside my cells. Shhh...don’t let the microbes know....it’s another surprise bulldozer attack!
In the spirit of having fun during my treatments, Alex and I have just returned from a lovely holiday in Maui Hawaii celebrating our 22nd wedding anniversary. Like all people, I have my challenges in life, but I have so many blessings and Alex is the best of the best! [We cancelled our overseas travels, so we can stay close to US hospitals, until my IV Central Line is removed. And what a large and beautiful country we have to explore and enjoy.] As my relapse has limited my mobility, Alex was kind enough to drive all over Maui, so we could see the sights, while my body rested in the car. Then we did some more resting at the beach and the pool. I believe the R&R has gotten my body ready for this next 10-week very intense protocol.
While I travel, I continue to infuse my IV meds on schedule no matter where we find ourselves...in grocery stores, at airports, on airplanes, at various events such a friend’s wedding, etc. (I will soon compile a list of unusual places and situations in which I have administered my IVs, as it’s now a running joke at our house). For me, it is important to continue as a normal a life as possible under the circumstances and to have my IV sessions just one of the things I do throughout my day...almost like brushing teeth ;-)
While infusing in public places, I often receive interesting glances from curious people, so (depends on my mood, of course) I use this as an opportunity to share the ravages of chronic tick-borne illnesses, such as Lyme (Borrelia), Babesia, Bartonella, Ehrlichia, Anaplasma, etc.
I have been on the receiving end of comments such as “My cousin had Lyme and was treated with oral antibiotics for 3 weeks and is now totally fine. Why are you having such a hard time?” My answer is always the same: We can think of Tick-Borne Illnesses in 2 categories: acute and chronic. In the acute form, if a person is treated soon after the tick bite (mind you, only 30% of people have the stereotypical bull’s-eye rash), then after a few short weeks of oral antibiotics that person may not ever have to deal with Lyme and it’s microbial “friends” again. If that tick-bite goes undiagnosed and hence untreated, the microbes that the tick transmitted during the bite (and there are many many various bacteria those ticks seem to share), can fester and take a strong hold inside the human body. Hence, the chronic form of the illness is so insidious, sly, sinister, and a very challenging to diagnose (my own journey has likely been 11-13 years old now).
I will report to you during my current 10-week bulldozer journey. During these upcoming very challenging next weeks, I hope to continue to keep my end-goal firmly in mind - that one day I can walk down the street!
My interesting life journey continues. Thank you for your continued love & support and for visiting me at my on-line home.
May health and happiness be yours!
4th-Month IV Treatments Anniversary!
In the effort not to have my lengthy daily IV treatment protocol be the focus of my life, my husband and I returned to the beach for a week’s stay. We rented a sweet tiny cottage shore-side, to make it easy for me to get to the water’s edge, as walking is still a challenge. What a splendid and healing location that was for me. Logistically, since I was traveling, I had the expected rough days, but nothing terribly unusual. I even met a lovely nurse at my destination who was kind enough to change my Hickman IV Catheter dressing, as needed.
Turns out some of my recent challenges have come from thyroid meds, which aren’t being absorbed effectively. I have heard from other patients, that this can be a fairly common phenomenon for Lyme/Tick-Borne Illness patients and for those on some IV meds. Thyroid hormones enter practically every cell of the body, so when the thyroids meds aren’t being absorbed, every cell, in turn has to deal with the shortage. Hence my extreme overwhelming exhaustion, worsening digestion, dry skin creating bloody fingers, etc. You get the idea. So now that my thyroid meds are being increased slowly, I am feeling a bit better once again. Lovely feeling!
I’m plugging along, one foot in front of the other, and trying to stay in the present moment as much as possible to keep my focus on “living” and wellness, as opposed to focusing my attention on “being a patient”. Each and every day there are so many things for which I am grateful!
Thanks for visiting and may health and happiness be yours!
Like the 133+ million Americans facing medical adversity today, I too, am on a seemingly insurmountable journey. In the midst of overwhelming calamity, what tools can empower us to get on with the business of living and thriving?
TEDx Talk "Why I Smile"
Ready for my TEDx Talk
Pulmonary Hypertension 101
Look Who Woke Up
Heart & Lungs are Fried
Scottsdale Lyme Treatment
Relapse & Snafu
IV Line Infection
I am Walking Now
Will You Remember?
Blocked IV Line - Pass the Drano
Treatments are Working
Lyme Roller Coaster
Going to the Mattresses
Lyme Bulldozer Treatment
One Step at a Time
Focus on Living
IV Pump Demo
Traveling with IV Supplies
Tackling Lyme with IV
Reducing Hidden Inflammation
SITE INFO & COPYRIGHT
© 2011 - 2016 Christina Danyluk
Welcome to this website. All visitors to this site and its pages are required to adhere to the following conditions:
• The material and contents of this site are provided “as is” without warranties of any kind, either expressed or implied. This site is not providing any medical advice, implied or otherwise. The suggestions are not intended to diagnose, cure, mitigate, treat, or prevent any disease. Please consult with your qualified health professional before making any changes to your diet or lifestyle.
• The content of this site is protected by United States and international copyright laws. No part of this site, including but not limited to written material, audio, and visuals, may be reproduced in any form or by any means without the prior written permission of Christina Danyluk, the author. For further information, please contact Christina Danyluk.