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*
“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,
“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.
If you'd like to consider donating blood plasma+ platelets, please contact the American Red Cross
THANK YOU for sharing life ♥️
(Platelets+Plasma donations require large machinery,
hence are done at ARC offices not at mobile drives)
Key blog posts:
Like the 133+ million Americans,
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
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