Sadly, at the ripe old age of twenty I am headed towards liver failure. I certainly haven’t had enough nights out on the town with friends to warrant my declining liver function…but as Frank Sinatra sang: That’s life! For anyone who doesn’t know this reference, please follow the link below and let your ears enjoy. Dana, my dear friend and “dorm mom” from the Hill School, first introduced me to it on a mixed tape she made to cheer me on and lift me up. She is my hero and my rock. I don’t know where I would be without her undying love and generous wisdom.

Our livers relieve our overtaxed immune systems by cleaning the blood, removing both poison materials that result from the body’s own metabolism, and those that are introduced from the outside. It is the most important filter of our blood and at the same time our chemical factory, responsible for transforming nutrients into our natural substances (eg. hormones). The main goal of this protocol is to the free the gallbladder and liver’s ducts of gallstones, clumps of gall, which substantially disturb vital processes, such as: digestion of food, elimination of waste products, and decontamination of harmful substances in the blood stream. The liver has numerous complex roles that are of the greatest importance for good health. Reversely, each malfunction of the body is, at least partly, caused by poor liver function. In a concerted effort to save my vital organ and reestablish a sense of normalcy within me, since last Saturday, I have been adhering to the stringent guidelines for the Paracelsus Liver and Gallbladder Detoxification Program. With the unblocking of the liver gall ducts, the several billion cells of our body can “breathe” better again and can receive a sufficient quantity of nutrients; they will be better able to expel waste products and be able to maintain perfect communication with the body’s nervous and hormonal systems.

Last night I began the dreadful preparations for today’s “Day-six Flush” of the intensive Gall Cleansing. The idea is to totally clear out your gastrointestinal tract, making way for the anxiously anticipated gall stones. It’s not a glamorous process, but I could not have been prouder when a few hours after eating breakfast this morning, I spotted the ‘fatty-floaters’ swimming at the top of the toilet. Admittedly, I was so overjoyed that I decided to scoop them out and rinse them off to display in a picture for my doctor. I will spare you the sight, but I consider it one of my most magnificent masterpieces.

https://www.youtube.com/watch?v=KIiUqfxFttM 

I am in the middle of a Liver Detox that is  stealing my energy away from writing any updates. My doctor feels as if it is necessary for me to extend my stay another week, so today marks my “halfway-there!” point. I try to keep reminding myself: even though I still have two weeks remaining….I also have two weeks under my belt.

On this holiday, celebrating the legacy of Martin Luther King Jr., these wise words of his particularly resonate with me.

We must accept finite disappointment, but never lose infinite hope.

This past weekend, our close friends from home arrived in Switzerland for treatment at the Klinik. Michelle’s son, Colin, has suffered from a horrific neuropsychiatric condition for years. What he and his family have been through is unimaginable. Despite all the emotional turmoil he deals with on a daily basis, Colin dazzles everyone with his intellect, sophistication, and wit. He is such a special young gentleman! Our handsome fellow showed up to meet his physician, Dr. Klein, this afternoon and when asked, presumably inquiring about his current symptoms, “How are you feeling?” he enthusiastically replied, “I’m feeling MOTIVATED!”

Dealing with chronic illness is a daily battle; not only physically, but also emotionally and psychologically. Many people get trapped in a negative mindset and fall into deep, consuming bouts of depression. I will forever be indebted to my family and friends who have bent over backwards to catch me and pull me back up before diving into those enticing black holes. Another trick pessimism plays on the brain of those dealing with long-term disease, is overwhelming hopelessness that, in turn, leads to complacency and premature acceptance of a future dictated by limitations. I can only attribute my excessive overachiever tendencies and tenacious drive to a higher being, because I don’t know from where else my undying motivation to get better could have come. At times, this ridiculous ambition has caused me more harm than good, as I have obsessed and over-researched in fields that don’t yet have the answers for which I am searching.

Evade depression—check. Remain hopeful—check. Never settle—check. Don’t give up—check. So far I probably seem to have it under control….WRONG. Where I stumble again and again is with deep-seated, profound GUILT. For years I have carried around a heavy conscience as a result of my rare disease. While seemingly counterintuitive, I indeed feel badly for suffering. This guilt morphs, taking on many forms. I feel regretful for the burden my sickness has placed on my family. My parents always assure me that cost is irrelevant, when your health is in question. Even so, I hate to think about the exorbitant bills accumulated through the years of appointments, tests, and treatments. I’ve gone to bed many nights in tears, utterly distraught over the feeling that I, in a sick and twisted way, did something to warrant my disease. This sentiment is amplified by no doctors’ ability to explicate the cause, origin, or trigger. I’m unable to wrap my head around the idea that I deserve to get better, when so many others who have suffered longer or harder than me, aren’t afforded that privilege. Particularly distressing, is the realization of all those younger than me, who are missing out on the beautiful childhood with which I was blessed. I simply cannot control the fact my heart bleeds for anyone in this world who has to face demons everyday.

Being here at the Paracelsus Klinik, I originally was struck hard by that extraordinary guilt. I walked around for days ashamed of how fortunate I am to be treated in such a superior setting to the hospitals around the world and even in the States. This is the epitome of “ivory tower” medicine in many regards. Through intent contemplation and purposeful meditation on the subject, I have started to move towards a more healthy perspective based in gratitude, rather than guilt.

This process was spurred by a meaningful conversation I had with our close family friend. Marie, kindly came over to my home before I left for my week long stay in the hospital before this past Christmas, in order to pray with me and preform the “laying of hands” on my head. I mentioned to Marie my strong desire to do God’s will. I have always been a “pleaser”, wanting to make everyone  around me perfectly happy. I told her with tears in my eyes, that I felt, perhaps, the tension I harbored was conflict between my ceaseless initiative to find a cure, and my possible “calling” to endure this illness indefinitely. I questioned whether I would find more peace and relief in accepting my fate and facing it gracefully. Marie immediately rejected my concern, assuring me that God wanted me to be healed. She turned to the Bible and she flipped to a psalm, which she was moved to share. The opening lines instantly resonated with me. She read, “My God, my God, why have you forsaken me?…” and proceeded through Psalm 22:1-31. It wasn’t until ten minutes later that we realized the psalm is titled: “The Prayer of an Innocent Person.” That moment was heart wrenchingly cathartic! I will forever know in the depths of my soul, that God sent Marie that day to comfort me, console me, and tell me, once and for all, that I am not to blame for my disease. Looking up Psalm 22, again tonight, in order to include with my blog post, I came across the various other titles, used in different translations of the Bible— “Plea for Deliverance from Suffering and Hostility”, “A Cry of Anguish and a Song of Praise”, “The Prayer of a Suffering Man”, “God Delivers His Suffering Servant”, “Suffering and Waiting for Deliverance”.

Each and every one reverberates through my soul. I hope that the message God has shared with me, through Marie, can in some way touch you and restore your faith in the goodness of the heavenly Being who created this magnificent world.

1 My God, my God, why have you forsaken me?
    Why are you so far from saving me, from the words of my groaning?
2 O my God, I cry by day, but you do not answer,
    and by night, but I find no rest.

3 Yet you are holy,
    enthroned on the praises of Israel.
4 In you our fathers trusted;
    they trusted, and you delivered them.
5 To you they cried and were rescued;
    in you they trusted and were not put to shame.

6 But I am a worm and not a man,
    scorned by mankind and despised by the people.
7 All who see me mock me;
    they make mouths at me; they wag their heads;
8 “He trusts in the Lord; let him deliver him;
    let him rescue him, for he delights in him!”

9 Yet you are he who took me from the womb;
    you made me trust you at my mother’s breasts.
10 On you was I cast from my birth,
    and from my mother’s womb you have been my God.
11 Be not far from me,
    for trouble is near,
    and there is none to help.

12 Many bulls encompass me;
    strong bulls of Bashan surround me;
13 they open wide their mouths at me,
    like a ravening and roaring lion.

14 I am poured out like water,
    and all my bones are out of joint;
my heart is like wax;
    it is melted within my breast;
15 my strength is dried up like a potsherd,
    and my tongue sticks to my jaws;
    you lay me in the dust of death.

16 For dogs encompass me;
    a company of evildoers encircles me;
they have pierced my hands and feet—
17 I can count all my bones—
they stare and gloat over me;
18 they divide my garments among them,
    and for my clothing they cast lots.

19 But you, O Lord, do not be far off!
    O you my help, come quickly to my aid!
20 Deliver my soul from the sword,
    my precious life from the power of the dog!
21     Save me from the mouth of the lion!
You have rescued me from the horns of the wild oxen!

22 I will tell of your name to my brothers;
    in the midst of the congregation I will praise you:
23 You who fear the Lord, praise him!
    All you offspring of Jacob, glorify him,
    and stand in awe of him, all you offspring of Israel!
24 For he has not despised or abhorred
    the affliction of the afflicted,
and he has not hidden his face from him,
    but has heard, when he cried to him.

25 From you comes my praise in the great congregation;
    my vows I will perform before those who fear him.
26 The afflicted shall eat and be satisfied;
    those who seek him shall praise the Lord!
    May your hearts live forever!

27 All the ends of the earth shall remember
    and turn to the Lord,
and all the families of the nations
    shall worship before you.
28 For kingship belongs to the Lord,
    and he rules over the nations.

29 All the prosperous of the earth eat and worship;
    before him shall bow all who go down to the dust,
    even the one who could not keep himself alive.
30 Posterity shall serve him;
    it shall be told of the Lord to the coming generation;
31 they shall come and proclaim his righteousness to a people yet unborn,
    that he has done it.

I trust the work I’m doing to rid myself of this absorbing sense of guilt, will powerfully aid in my overall healing process. Once I am more willing to put down the weight from my shoulders and embrace appreciation and acceptance for the crosses I’ve been asked to carry, then my body will become more receptive to the nutrients, remedies, and maybe even one day, far from now, a cure. Today Dr. Rupp expressed his personal frustration over being so baffled by my case. He has put in countless “off-the-clock” hours trying to get to the root of it all, but unfortunately he is still gravely perplexed by this nasty puzzle. My competent doctor admitted, that while he is confident in his ability to ease my pain and shut down the detrimental immune processes ensuing, he is unsure whether some of the damage to my nerves, heart, and brain, will be reparable. Be this the case, I am now more hopeful that I will be able to confront this reality with appreciation for the progress, instead of guilt over the remaining impairment.

Thankfully, the laws of nature differ from the ways of the American judicial system. Anyone who struggles with a disability, for an extended period of time, should continually remind themselves: instead of “innocent until proven guilty”, we are forever, entirely innocent.

 

Things have been just short of brutal so far this week. My Monday, Tuesday, and Wednesday have consisted of appointments and therapies running from 07:30 until 17:00, with just an hour in between, to catch my breathe and pause for lunch. My fatigue is worse than ever, so I shuffle around the Klinik like a zombie. Continuous night terrors haunt me and make restfulness that much more unattainable. I feel terrible waking my mom from her most deep sleep, unknowingly screaming about various subconscious evils confronting me. I get in bed at dusk drained from the day and get out of bed at dawn exhausted from saving my friends and myself from treacherous Tsunamis.

The novel additions to my treatments this week were Thermography testing (an extremely sensitive method for measuring point-specific differences in body temperature), infrared light therapy, infusions of alpha-lipoic acid, neural therapy injections, and Matrix-Regenration Therapy (including Bioresonance therapy, direct current treatment of the tissue, and a petechial vacuum extraction massage). According to Dr. Rupp, my Thermography results revealed my “body’s ability to handle change, in any form—temperature, time of day, altitude—is ZERO!” In order to try to alleviate some of my shooting nerve pain, Dr. Rupp injected a syringe of neural therapy into my neck, right beside my jugular vein. The experience was un-“nerving”, to say the least.. pun fully intended. I immediately broke out into profuse sweats and my left pupil contracted to the size of the head of a needle, while my eye lid got swollen and drooped for the next couple hours. It was a bit bizarre!

It is very clear to me what it is that is giving me the strength to endure—the people around me. Each person I meet is nicer than the next! The staff, for the most part, is just beaming with optimism. Everyone who has ended up working here has an incredible story to tell about what brought them to this remote town in Switzerland to treat the ailing. Even more remarkable though, is how I am surrounded by the most unbelievable warriors! In my humble opinion, my fellow patients are some of the most impressive people that inhabit our planet. The kindness, shared by all the visitors on extended stays, is a palpable ray of hope, which shines throughout the Klinik.

The next best thing that has happened to me in the past few days are a pair of pants. My body’s initial reaction to some of the treatments was to become more inflamed than seemed humanly possible. For a day or two I couldn’t bend my fingers, because the joints in my hands were so puffy. Following hyperthermia therapy, I realized I couldn’t fit into any of my pants, because my legs had blown up like hot-air-balloons. Still being a 20-year-old girl, not yet immune to the immaturity of vanity, this frustrated me to no end. My mom, who has stood by my side and been my biggest advocate every step of the way, spent the next day shopping around St. Gallen to surprise me with a treat. Following my 06:00 wake-up call, when I went to get dressed, she proudly pulled out this beautiful pair of velvety, loose-fitting pants. Anyone who knows my mom, knows how artistically gifted she is. Her magnificent taste extends beyond her eye for interior design, thankfully, she is quite fashionable as well. In contrast, anyone who knows me, knows I am not a fan of perusing the mall or trying on clothes. Frankly, my strong distaste for shopping came about as my symptoms worsened and the process became too taxing. Due to my disinterest in clothing purchases and my mom’s knack for finding special pieces: together, we make a glorious couple! On the day she gave me that pair of pants, she gifted me with much more than a cute look, she blessed me with self-confidence and dignity—both qualities that are hard to hold onto while battling a chronic, rare illness.

I’m half way through my stay in Switzerland thanks to my stupendously compassionate doctor, the wonderful secretaries and nurses at the Klinik, the resiliency, kindness, and hopeful energy of my fellow patients, and….my perfect pair of pants.

On this snowy Sunday morning, mommy and I went to the St. Gallen cathedral for mass. Honestly, we didn’t understand a word of it, besides the occasional ‘Jesús Christus’ and the mention of ‘Papst Franziskus’. We enjoying receiving communion in such a magnificent church. The nativity was our favorite part. Our dear family friends request I post this message and link: “Many of us are are saying a novena to St. Pio for Francie’s complete cure. Please join us if you wish. It is the 2nd prayer on this link: http://padrepiodevotions.org/prayers-of-padre-pio/ St. Pio also said the Efficacious Novena To The Sacred Heart Of Jesus daily for healing of his children.”

After my first, long week at the Klinik, mommy and I expected to have Saturday and Sunday to ourselves and hoped to casually tour the closest city, St. Gallen. Instead, Dr. Rupp phoned our hotel room around 11:00 and inquired how I was feeling. Sadly, I reported, I got barely any sleep and my pain was pretty bad, particularly my abdominal discomfort. Making a rare exception, on his weekend off, he asked me to meet him, so that he could give me oil to rub on my most painful areas and medicine to help with my bowels.

As the Yiddish proverb goes, “Man plans and God laughs.” Dr. Rupp told us he had just seen my first blood test results, since my arrival at the Klinik, and he was completely shocked! He had already determined the majority of my symptoms were attributable to autoimmunity, heavy metal toxicity, immune deficiency, brain inflammation and toxicity, rheumatoid arthritis, and severe systemic inflammation. What he had discovered, which wasn’t in his original diagnoses, was that I have a dramatic acute infection, which has caused my SED rate and CRP to fly through the roof. He was alarmed by these drastic levels and admitted that this substantially changes our course of action. What came next was frightening, while simultaneously comforting, because it allows me to trust that time my doctor’s ego isn’t going to get in the way of treating me properly. Dr. Rupp said, “In the past 25 years of practicing medicine I have never once prescribed an antibiotic to a patient. I have always been able to treat any infection through other, more natural modalities. However, as much as I hate to say this, I think I might need to give you antibiotics. Go home and rest, please try not to get out of bed. We will discuss this more on Monday.” I was utterly flabbergasted!

Though the news of the morning was not uplighting, mommy and I received an update from home last night that had us elated. Anyone who knows me well, knows that my little brother means more to me than anything in the world. My whole family is closer than close, but Teddy and I have a particularly strong bond, in part due to the fact we slept in the same bed for seven years. When I was in 2nd grade, I heard about the tragic kidnapping of Elizabeth Smart. This beautiful 14-year-old girl was taken at knifepoint from the bed she shared with her sister, while the entire Smart family was home asleep. For anyone who doesn’t know her incredible story of faith and fortitude I would highly suggest her autobiography, written a few years after being saved from the monsters who tried to steal her life and reunited with her wonderful family. At the time of her disappearance, though, I was very shaken up by the thought of being stolen in the night from a seemingly safe and secure house and neighborhood while my parents slept in their bed down the hall. No worries! I conjured up a plan of my own to retaliate to such encounters with villains. I would sleep in Teddy’s bed against the wall. When an intruder approached, they would inevitably go for the closest, most easily accessible body. Therefore, they would take Teddy….but I would save him! Each night, before retiring, I would double check that the two doors in between his room and my parents’ were slightly ajar, so as not to require doorknobs to enter. Conveniently, the doors opened by swinging away. The plan went: The kidnapper tries to snatch Teddy. I quickly jump to my feet and, standing on the bed, kick the “bad guy” right in the face. I leap from the bed and hold my arms out straight in front of me, with my elbows locked. The doors swing open easily because of the well-designed set-up. I run to my parents bed and wake them. My dad immediately jumps into his Superman form and runs to ensure Teddy’s safety.

Hm, I guess I was a bit imaginative as a kid. 

Now, back to the good news! Yesterday, my best buddy in the world, my “T-Bone”, scored a hat-trick in his ice hockey game. Teddy has played AAA hockey for years and he is very talented. What I love most about watching him play is how much heart he puts into every minute on the ice. Last weekend, before flying to Switzerland, Teddy and I said our goodbyes early, because he was headed to the rink for a game, as per usual. As he walked out the door, my dad called to him, “score a goal for your sister!” It was not long after he left that I realized I had lost my passport and ended up missing my flight. When he came home after the game, he was surprised to find me still there. I was frustrated about having made such a big mistake, but his response made everything better. He grinned and said, “at least I get one more night with my girl!” We all wanted to know how the game went and he told us that he had indeed scored a goal for me. My dad replied, “how many?” and his answer was, “just one, you only asked me to score one for France.”

Again, this morning, I wasn’t expected to check in until 09:00. My body had its own plan in mind, waking me up repeatedly throughout the night, and for good at a little after 06:00. By 06:30, as I laid in bed trying to ignore the pain, I could hear Dr. Rupp’s voice in the back of my head, “Don’t be a hero.” He has told me many times since my arrival that I must give up dealing with pain so stoically. I took his advise to heart and had my mom drive me over to the Klinik as early as possible to receive another Procaine infusion. I finished just in time for my “nose therapy” appointment. This treatment is administered via syringes of homeopathic remedies dripped into one nostril at a time. The nurse, then, carefully rubs the tincture into the surrounding area. Its general purpose is to act as a lavage for the sinuses and nasal pathways, ridding them of any chronic infection and inflammation.

I then returned to the super ebullient Dr. Rupp for my daily consultation. During our time together, much was accomplished. He diagnosed a fungal infection growing on my left quadricep, just inches away from my scar from a muscle biopsy performed this past fall to confirm our suspicion of mitochondrial damage and myopathy. Dr. Rupp also found this inflammation forming on my bottom. Thankfully, he has a cure for it. What a relief to finally hear of just one easy fix! He proceeded to inject my second round of stem cells, this time from the adrenal glands and liver, into either side of my rear end. Moving less than a foot up my spine, he injected a neural therapy shot into both adrenal glands.

By 10:00, I was rushing over to my dental appointment, so as not to be late, a doing that is highly frowned upon in Switzerland. Admittedly, I feel as if I was blindsided into what happened next. On the day I arrived, I had a 2D panoramic X-ray at the Paracelsus Biological Dental Center next door. Two days after that, I was asked to return for a 3D scan and a consultation, during which the dentist told me he had found Neuralgia-inducing cavitational osteonecrosis (NICO), cavitations in my jaw bone, which presents in conjunction with chronic facial neuralgia. He told me they would call me back into the office for a third look to talk to me about surgery. Little did I know, today was the day for the thirty second chat and the hour and a half long procedure. The scene seemed like it could’ve been out of a sci-fi horror film. Everything in sight was pure white except for the bright red chair and my dentists bright red splattered gloves, as he dug around, removing chucks of my jaw bone. Glad to report: the surgeon seemed adept in his trade and sent me home with chipmunk cheeks in exchange for the gross infected bone housed in my mouth, hiding beneath my gums. In the lobby I stood thoroughly enjoying the cool water in my half numb, very swollen mouth, until I suddenly felt a steady stream of liquid dropping down the front of my blouse, straight to my foot. Luckily, no one else was there to witness my dripping and drooling!

I skipped lunch, knowing that swallowing most anything would hurt, and unknowingly spitting up my food in front of strangers would be mortifying.

At 13:00, I went for my cupping session. I then had another inhalation therapy appointment, before I went to the infusion wing for ozone therapy and two nutritional IVs. I ended the day with a dreaded, and rightfully so, massage. Sadly, while it sounds like a luxurious treat, it is a nightmare for me. When I’m in the middle of a flare-up, anything touching my skin is unreasonably painful due to “allodynia”, a sensation of extreme pain due to a stimulus which should not normally provoke pain. The massage therapist was sweet enough to adjust her pressure level and to deviate from the normal procedure in order to spend time massaging my abdomen in a clockwise direction to promote natural peristalsis, aiding in digestion.

Finally, the last thing on the agenda for this cloudy Friday, was magnetic field therapy. All I can say is TGIF!

I wasn’t expected into the Klinik until 09:00 for my acupuncture appointment. However, unfortunately, I’m still adjusting to the time difference and therefore woke up much too early. As someone who gets very poor sleep to begin with and already acutely sensitive to changes in environment (temperature, altitude, etc), the time alteration might take awhile to get accustomed.

This morning was proof that unpredicted and unplanned circumstances often work out for the best. Instead of administering acupuncture, Dr. Rupp decided it was more important for us to talk about my prior progress, current feelings, and future apprehensions. The conversation was far better than any time we’ve spoken before, in part because it was our first time one-on-one. He finally recognized the necessity to speak to me professionally, instead of stooping to layman language and sugar-coating everything out of his mouth. I’m not interested in signing-up and blindly following anyone’s program. Gratefully he now realizes this, and agrees “full disclosure” is the best policy with me. Dr. Rupp even apologized for being curt and dismissive of my desire to know as much as I can about what’s going on inside me and throughout my treatment plan. Feeling more comfortable with my doctor and more at ease with the approach is refreshing and restores my hope in the Klinik’s ability to aid me in my healing process.

Dr. Rupp also injected my first round of stem cells, known here as Organ Cell Extracts- from the “cartilago”/cartilage and “glandula suprarenalis”/adrenal glands. These are especially useful for halting the destructive autoimmune process ensuing inside me.

The rest of the day was packed to the gills. I went from magnetic field therapy to my session of Schöndorf Current-Therapy, a method by which wavelike impulses in counter beat, working deeply into the muscle and body tissues and improving the blood and lymph circulation, as well as the decontamination of tissue. Dr. Rupp chose this treatment modality to address my under-active thymus, a specialized organ of the immune system where T lymphocytes mature. This, in part, accounts for my issues with immunodeficiency and IgG subclass deficiencies.

Afterwards, I trekked back up to the top floor of the Klinik for a couple hours of infusions. Today, I received my first dose of Procaine, which we are praying with finally ease some of my intense chronic pain, as well as reduce detrimental inflammation.

After lunch in the Klinik’s Culinarium, I had my second CET of Indiba/Local, liver hyperthermia session with Shaji. I am still so worn out from yesterday’s therapy that I couldn’t keep my eyes open on the table. I kept dosing off. At one point I woke myself up, suddenly, when I realized that my hand had fallen off the edge of the bed into his lap. If I wasn’t so tired, I probably would’ve been slightly embarrassed.

I, then, went back up to the main procedure building for foot reflexology, followed by TANS Autonomic Nervous System/Heartrate variability training with my Kentucky pal, and, finally, inhalation therapy to clear my sinuses of chronic infections. Toward the end of my last treatment I started to have awful joint and nerve pain. Therefore, the nurse called Dr. Rupp and he promptly left the meeting he was in with another patient to rush to my side. He ordered a “stat” Procaine infusion and promised me he would do everything he could to ensure I didn’t suffer the way I have been for years. He scoffed at the notion of a “doctor” letting a patient live in constant intolerable pain; and insisted that is the doctrine of biological medicine! Almost immediately, a nurse on the infusion wing had a line in my arm and I wrapped up this long Thursday with my second Procaine drip.

I am back at the hotel and too drained to leave my bed or do anything more than brush my teeth. I hate to keep anyone in suspense, but unfortunately the analgesic effects of the Procaine have yet to manifest. Hopefully tomorrow will bring better news to report on this front.

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.

http://lightinlife.org

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”.

Bella is a dear friend I made during physical therapy sessions four years ago. I met this remarkable young woman while we were both enduring aquatic therapy, in hopes of overcoming Reflex Neurovascular/Sympathetic Dystrophy (RND/RSD), a chronic pain condition also know as Chronic Regional Pain Syndrome (CRPS). She is still valiantly fighting every day, and doing so with an inspiring spirit and uplifting smile! I am continually amazed by her unceasing courage and overflowing heart. She will always be my hero. I’m sending all my love and birthday blessings from across the great big, blue sea to Bella and her family.

Young, Lyme Disease Warrior Isabella Johnson has been in hospital for two months now. She’s celebrating her birthday here with family from her hospital bed. “Bella” as we all call her is a strong advocate for Lyme Disease as well as other illness/diseases. She always has time and a few kind words to show her love and support for others. So today, we honor you and your family who support you Isabella – on your birthday! Happy Birthday!!!!