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:
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*
“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,
End of Week 7 and today begins my 8th week of Tick-Borne Illness Treatments. I do not yet feel a large improvement in many overall symptoms, but there is now an reversal in my ALS*-like symptoms and now I have some good days (in late December 2010 I had lost some use of the right side of my body and had difficulty swallowing and breathing and there was a suspicion I might have ALS). The days I feel physically stronger keep me motivated to work through this quite challenging phase of the treatments.
My husband and I just returned from a short trip to Southern California for some R&R near the beach. I have gotten the hang of traveling through airports and on airplanes with all my IV supplies, refrigerated liquid IV medications, etc. We feel it is vital for my healing, to have “a life” outside of my condition and the treatments. Although I am not yet strong enough to be very physically active or stand on my legs for long periods of time, we have planned a few short trips in which we can rest, watch beautiful scenery, and enjoy each other’s company and life in general.
Thanks for visiting and may health and happiness be yours!
• ALS = Amyotrophic Lateral Sclerosis aka Lou Gehrig’s Disease
ALS is a disease of the brain and spinal cord nerve-cells, which affect voluntary movement. Some symptoms include:
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
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