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!
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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