Yesterday was very, very busy. By the time we got back to our hotel I was too drained to write about everything that happened. However, this afternoon I had some down time, so took the chance to recap the highlights.
My schedule at the Klinik went as follows:
07:30- I met with our treatment coordinator, Barbara, who taught us how to read our protocols (half in German, half in English) and follow our schedule, so that we wouldn’t miss any appointments. We made a mistake by arriving 5 minutes late and quickly learned what a big “no-no” that is in a place that runs on “Swiss time”. Mommy and I got a long lecture on the importance of punctuality, which we later had to laugh about, because of how uncharacteristic it is for either of us to ever be late for anything.
08:00- We then had our second meeting with Dr. Rupp, who was as lively as ever! He gets frazzled very easily, so he can only handle a few questions at a time, which is quite frustrating for someone as curious as I. All the while, I am doing my best to trust in the wisdom he has gained through 28 years of practicing biological medicine. Admittedly, after years of needing to manage my own health, I’ve lost the ability to “let go of the reins” and struggle immensely with submitting control.
08:30- I marched straight down the hall to the laboratory and provided a urine sample and 16+ vials of blood. I also received an injection of DMPS for a provocation test known as the “Dimaval Test”, a method of detecting heavy metals embedded in the body. Fifty minutes later I was instructed to return to the lab for a second urine sample, which (thanks to the DMPS) can then be analyzed to determine the amount of heavy metals in the body.
09:45- I proceeded to the infusion room, an adorable, little, “chalet” setting for IV Ozone therapy, also known as “haematogenous oxidation therapy”, followed by two nutritional infusions. Not long after my IV was placed, a cheery, older, elegant man walked in sparking up a friendly conversation with the nurses in German. I had no idea what he was saying, of course, but for some reason I could tell he was the type of person I would love to know, in particular, at that trying moment. Once we were both settled in and the nurses left us alone, we caught each other’s eyes and smiled. He must have recognized the befuddled look on my face and inquired, “Do you speak English?” I think I lit up at the joy of making my first real “Swiss friend”. We gabbed and gabbed for the duration of my three drips. What a treat it was to have such an enjoyable way to pass the time! George is from Zurich, Switzerland, just an hour or so away from the Klinik and he has been treated by Dr. Rau for quite some time. He told me he has seen tremendous improvement in his health and returns to receive three hours worth of infusions every month. As I was leaving he shouted, “Toi, toi, toi—all the best!”, and vigorously banged his fist against the cedar wood wall….it must be a Swiss thing! I feel blessed to have befriended such a wonderful person, he evidently has a heart as beautiful and peaceful as his country.
11:00- I had another quick meeting with my treatment coordinator. During this time my mom was overjoyed to discuss with George their mutual love of art. He even invited her back to Zurich in June for a world-famous art show.
11:30- Upstairs, for magnetic field therapy, was my next stop. Magnetic field therapy is a physical therapy, in which broad pulsating magnetic fields of extremely low frequency are made usable for therapeutic purposes. The magnetic fields are able to penetrate the body and ultimately every cell, subsequently improving the cell’s oxygenation and thereby its metabolism. It was a very simple and noninvasive procedure, which basically felt like nothing while lying there with this round contraption around my abdominal cavity. Like I said, I’m doing my best to trust in the healing power of this program without second guessing every detail.
12:00- I then received local hyperthermia treatment for my liver. “Capacitive electronic transfer (CET) of Indiba” provides a deep hyperthermia functioning though an insulated metallic electrode. The locally induced fever stimulates the organ’s natural defenses against infection and alterations. For people, such a myself, with severely compromised liver function, this therapy is useful for increasing blood flow to a specific organ and thereby causing regeneration. Shaji, the Indian man acting as the hyperthermia technician was so clearly inspired! I attempted conversation by asking about the popular sport followed in Switzerland. He stumbled for a few minutes, trying to give me an answer, but then decided to admit that he simply wasn’t interested in sports whatsoever. Shaji instead shared his magnificent journey, which led him to Paracelsus and to his passionate hobby of giving back to his homeland. He and twelve other families in Switzerland began a nonprofit organization to support those devastatingly impoverished in India. This man, who originally appeared very reserved, seemed to have had a light switched on inside him, talking fervidly about his realization that we are all called to do much more in life than merely provide for our families. Shaji elaborated on his firm belief, emphasizing our necessity to give back to others as gratitude to the Universe for all the blessings bestowed on us. I wish I could reiterate more accurately the profound wisdom he shared. He was undeniably a person who found his purpose in life and was particularly comforting to a bewildered twenty year old with such uncertainty about this scary planet.
I would highly suggest looking into his charity and considering making a donation. Shaji assured me that 100% of the proceeds go to those far less fortunate than we, and in many cases those struggling with disabilities.
13:00- I had lunch by myself in the Klinik’s “Culinarium”, a small restaurant, which only prepares hypoallergenic foods according to the universally prescribed diet. For many people who are first introduced to this part of the program, diet is a big shock and difficult adaptation to make. I am grateful to have already followed this virtually vegan, gluten-free diet for the past three and a half years. I am discouraged, however, that despite my strict adherence to the rules of “clean eating” my gastrointestinal symptoms and intestinal damage have only gotten worse.
14:00- I again returned to the laboratory; this time to give a stool sample and have a routine EKG. Over the years, I have had countless EKGs. In fact, it was because of an EKG that a doctor in Chester County caught onto my uncommonly low heart rate and blood pressure, that lead me to my original POTS diagnosis. Thankfully my ticker checked out well and I could just enjoy experiencing the unique “European way” of preforming an EKG, very different from the way it is done in the US. I am amazed and appreciative of how much little waste is accumulated from medical procedures here, as opposed to the unnecessary extravagance at home. I hope one day these techniques spread to the States, where we may embrace a much more environmentally friendly way of medicine and life.
15:00- Next, I had Colonic Hydrotherapy with a jolly woman who wanted to talk about food the whole time. She was going on and on about the time she visited Boston and had maple syrup ice cream, which was apparently the richest, creamiest most delicious treat she had ever tasted. This joyful nurse shared her dream of visiting Canada and in hopes of seeing moose and bears hunting salmon. I do hope she gets there one day, because someone who dedicates their life work to caring for patients in such vulnerable and uncomfortable positions and treats every patient with such respect and gentleness, undoubtedly deserves an extraordinary vacation. I later learned that she paints landscapes and wild animals to hang throughout the Klinik, simply to comfort the guests during their stressful visits. I think she could appease most’s distress even more by setting up a maple syrup ice cream kiosk.
16:30- My final appointment for the day was Cardio Sonic training, or heart rate variability manipulation. It’s a therapy, similar to biofeedback, which uses pulse measurement visualization to help people to retrain their Autonomic Nervous System, bringing the parasympathetic and sympathetic branches into balance. I walked in, not knowing what to expect, but was pleasantly surprised to hear a familiar sound—the voice of an American. What do you know! The doctor was all the way from Louisville, Kentucky. I’m sure he was was as surprised as I, to learn my mom’s side of the family was from Danville, just an hour and a half away. My great aunt and uncle, “Uncle Nancy” and “Aunt Larry”, as I liked to jokingly call them when I was little, still live in the Cincinnati-Northern Kentucky metropolitan area. It is such a small world!
Today I only had one appointment, because of the intensity of the treatment. Whole body hyperthermia is the most severe of any healing modality at the Klinik. The goal of “passive fever therapy” is to raise the body temperature to 38°-40°C (100.4°-104°F) for more than 1-2 hours. The idea is similar to that of local hyperthermia, except there is more than one organ targeted- it affects every cell in the body. The process is difficult to explain. I still feel raw and terribly swollen from the experience. Most definitely, one of the hardest things I have ever done, physically or mentally! I can honestly say I never would have gotten through it without the tender and vigilant care of my nurse who stood by my side the entire time and the doctors who came in repeatedly during the 5 hour duration. Hopefully when I have to do it again next week it won’t be such a painful incident and might have the stomach to talk more about it.
The treatments have been grueling and intensive thus far. I am beyond grateful to have my mom here with me. She has been an angel, doing everything she possibly can to make this experience less painful, and maybe eventually even remotely enjoyable. We both agree the thing that is keeping us both most hopeful at the moment, is simply the kindness and goodness of every person we have met thus far.
ps. Here is the “Message from the President” (Shaji, my local hyperthermia therapist) that I found on the website of the organization he founded. It doesn’t get much more inspiring than this!
Great things just happens. Water flows from the top of the hill towards the bottom and reaches the final destination to be merged with the sea, where each drop of water cannot be differentiated. We have a dream that each one of the human being around the globe have the same destiny where rich and poor may not be differentiated.
God has given us two beautiful eyes. We can never see the expression on our face with our own eyes. We are given the eyes to see the pain and sufferings on the face of others. Surely if we suffer, others will see us with their eyes. Similarly God has given us two strong hands but we cannot be lifted by ourselves, whereas we need two hands of others to lift us. So it is evident that the two hands given to us are not for ourselves, but to lift others.
To get an inner vision we have to light the outer light and in that light we see the pain and sufferings of hundreds of thousands of helpless fellow being around us. Each member of “Light in Life” is dedicated to give a spark of light where a chain reaction is initiated so that one day the whole darkness of helplessness whatsoever is eradicated from the face of the globe.
We strongly feel and firmly believe that you are also one among us to join the chain of light sparked by “Light in Life”.
5 thoughts on “Light in Life”
Francie. You are a joy to know and yet I dont know you that well. My prayers and best wishes are with you for the duration. You are strong and stay that way. Love U
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I’m sitting here in our living room in Asheville which I hope you will visit (because you WILL beat this thing!). Kim and I are in awe of you and your amazing spirit. I’m trying to picture you there, going through each treatment and hoping you are not afraid or in pain. I’m glad you are not alone and have such an amazing family. I’m looking out our window at the mountains near our home and wondering what the landscape is like there and wishing you were exploring that instead of a cure. I don’t know why certain people go through challenges and others are not called to face these trying times. I wish I could find a word to tell you how much I truly admire your courage and strength as well as your ability to articulate this time in your life. If my thoughts and prayers can travel the many miles to where you are, please know that Kim and I are here, love you and will do whatever we can to help. KEEP GOING! The answer is there and you are going to find it. All our love, Jillian and Kim
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Francie you should do your memoirs we are so inspired love Faith very very intense day
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i thought I was going nuts with all the problems I am having. It pales in comparison with what you are going through. You are very brave and we all are praying for you. I got good news today from my hematologist. My red blood count is up to 10.8 up from 4. And she dropped my steroids to 10 mg. down from 80. I am hoping my body functions will return to normal. You never appreciate the simple things in life until you loose them. I have been in the house for three months. The only trip out was in the ambulance when I went into a diabetic coma. I made a mistake in my insulin and almost killed myself. I hope my headache cure helps you. Hang in there I hope you and I can take a long walk on the beach someday.
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Colin & I Can’t wait to meet shaji! We will surely donate to his exceptional cause.
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