The book When the chocolate run away
Category Archives: Middle East
2 Coma Brain and my Mind 7
I continue to share the story my mother wrote, and even though it makes me think it moves me, it reminds me of so many things. Also since my brain was destroyed, and you don’t even know when someone reads it, I feel enormous gratitude.
It even reminds me of all the doctors I still think about their perceptions of their readings. So understand. I confess that I was already depressed, and I couldn’t get better and I don’t even know what my purpose is because of why I live. But now I understand how when we get sick we get to know each other better, and how this week I’m even going to post no doctor should think I could do that. But these days I’m not even ashamed of my losses, I’m grateful and even want to share how the path looks better. So I’ll show you my story.
03/28/17 – wakes up at 3:30 in the morning complaining of a lot of pain in the leg. Medicines: phenobarbital 250 mg and cortisone 20 mg, dipyrone, tandrilax, tanderil03/30/17 – return to Mutarelli and RETURN IN THE CASE. Dr Mutarelli says that Julieta does not have cerebral vasculitis and probably never has.
04/10/17 – Given the difficulty of talking to Dr Mutarelli, we decided to go back with Dr Karen. Juliet worse and worse. She can’t see, rolls her tongue, feels pain in her leg and there is no diagnosis. Until the day.
“03/21/2017 – At the suggestion of Dr Karen Fernandes herself, from Dr Getulio’s team and who had been treating Julieta, we decided to consult Dr Eduardo Mutarelli (H.Sirio Libanes). Dr Mutarelli examines and listens to Julieta for 1h50. Juliet in complete mental confusion. Examines, talks about cramps, prescription Quinine, Pregabalin and asks to see tests done at Samaritano in 2016. Long appointment but impossible to talk to Dr again. Mutarelli, with assistants only.“
“ 04/15/17 – Julieta starts off in the morning. She is taken to H. Samaritano where she remains for 34 days, 25 days in the ICU, 10 days intubated. She goes into a state of epilepticus, gets two hospital infections, a leg bends, the foot turns inwards and she is forced to do physiotherapy on the orthostatic board. Then she is obliged to use an orthosis. She needs to relearn to walk, to talk. She completely loses her memory and struggles to recognize people.”
“During the rest of the year, she undergoes five sessions of pulse therapy with cortisone and cyclophosphamide. Ends the year with 690 neutrophils.”
5/26/17, at Dr Karen’s request, redo the Angiography exam. This time, at her request, he arranges with Dr. Paulo Puglia who is emphatic: Julieta DOES NOT HAVE CEREBRAL VASCULITIS. And, just like Dr. Getulio, suggests that she must have an AUTOIMMUNE ENCEPHALITIS. It remains to find the trigger.
Since my first doctor I consulted and met was in London, running away from medicine. But I also know that even when I followed and fled I found several neurologists, and they changed the diagnosis.
I was living at that time in Lima in 2026, 2017, Peru and I returned to São Paulo, Brazil. But since 2008 I would go to Sao Paulo to see doctors and hospitals. And always Changed perceptions on what I have.
But my diagnosis :), as I did, and I ponder whether my epileptic seizure is well influenced by mental reactions – I’m disgusted with myself, or a loss of someone.
But useful in a way was not knowing how to focus inside my mind. But in a way the time I fall it’s like I’m blurring out of myself, and shifting to something else. That is, if we stimulate the brain we have to try to calm the brain and not stimulate thinking to become strong. But when I take medicine I go to the hospital.
01/17/20- 01/22/20 – H. Samaritano (6 days)Julieta feels severe headaches, and in the midst of a lot of mental confusion, she is admitted to H. Samaritano again, where she stays until 01/22. She has many MRI’s and EEG’s and is again subjected to pulse therapy with cortisone, various anticonvulsants, etc. Upon her arrival, in 4 hours the electro registered 90 electrical discharges, which according to Dr. Rodrigo, already configures status epilepticus. In 12 hours the discharges drop to less than 50. MRI, in turn, did not show new lesions.” But that time I had taken medicine, and I met Dr Rodrigo and he started a new path. But I tend to try to take medicine more seriously. I even managed to deal with the loss of my grandmother.
But on the 29th of 4th 2021 my friend Sho passed away. It made me fall. He lives in the USA this time, and we’ve known each other since 2001. We’ve always met around the world and in those months everything was fine we went to Asia 2018, he came to Brazil on the 19th and 2020. So when he disappeared and I went to the hospital again
05/05/21-05/19/21 – H. Samaritano (15 days)He collects liquor that is sent to the Mayo Clinic in the USA and, like the other two times, nothing is discovered. The MRI already shows two new lesions in the brain, one on each side. She complains that her hand is “locked” and has a lot of mental confusion. She undergoes 5 sessions of pulse therapy with Solumedrol (cortisone) and 5 sessions of Immunoglobulin. She undergoes a bone marrow biopsy and PET Scan.
In 2021 I lost my friend Sho. My diagnosis is the soul, it’s our mind and even learning from the fall. Now I also take Rituximab, Gardenal and Vinpat, and it seems that it helps me to eat and be aware the of food.
But now in 2023, I managed to tell you again meditate, and don’t get caught up in a diagnosis, and don’t even run away from medicine.
Never get stuck on a diagnosise, we just need to evolve from the inside of us. Yoga, helps a lot to meditate. And I even managed to make a song, and write :).
Our Oca, who we are, and another she is inside. My dear friends are all over the world. There are areas of our brain that we don’t even use, we have to wake up and not believe that we can’t try and improve.
Love , Jules
The brain and my mind 6
Again I share my story to not give up your hope. As I am to write , and to activate my mind, and brain. We have to not give up how we are. Because I know that People always say think understand that we think.
When I lived in Brazil , after my comas I was in the house of my grandmother , so I write, and how my mother said and think, and how I remenber. And to think what we understand in deferent way
My mind mam wrote ( 2014, 2015
“she keeps recovering, fragile, but she has no crisis. 01/18/15 – goes driving alone to Ubatuba. She meets Andre Cunha with whom she marries for the 2nd time in Sep / 15.“
But I remember differently, I was living with my grandmother and she always had don’t say all the time about coma, and I kept hope to be like I am .”
I kept driving, travel alone to to travel in Brasil. When I was in Manaus, I decided to take a boat to arrive in Columbia, I took a seat for both the transporter elderly people and bills what about going to small cities
When I got better in 2014, I told my grandmother and I wanted to know and travel in Latin America. My grandmother was never one to say things that talk about negative things. She said we’d see each other next year. I flew to Manaus, couch surfing, and decided to take a simple and cheap boat.
It was a boat that brings materials, and things from the cities, through the cities of the Amazon. I saw indigenous people and Brazilians. But I started to understand Brazil. Since even I am from Brazil but even I feel I am a foreigners in my country.
How could I not remember , I traveled hammock on the boat. At the bottom of the frame were the things that were transposed, and we were on top.
Since I always speak to everybody I even became friends with the captain. He was worried about me. There was a boy that tried to speak to me all the time and he was trying to make my things to be in his schoolbag. My old was open, since we are in the boat. But when I had told to this man who wanted to put in my bag the captain m. Manuel started to talk to me .
In any city that we arrived I would ask him if I could go out. They stayed for eight hours, I will go and see the reality over there
Here were children from the Amazon and were indigenous they would try to sell things for us. Mister Manuel was not worried about my problems of brain. He was shocked that I trust people.
But since I met André in Ubatuba in 2015, we decided to go to Venezuela to Mount Roraima. As if I were relax, but André is a million times more than me. As if he could trust humans more than me.
But in 2015 we also traveled to Chile, since I’ve always lived in many countries, and I’m curious to visit more countries.
I have lived in Peru in 2016
My mother has written .
“ – Feb and Mar 2016 – Feels severe headaches and sees lights for about 3 weeks. Exchange ideas with Dr. Getulio but refuses to return to his office to redo the exams. She says that she “never goes back to a hospital or is treated using Western medicine, only Eastern medicine”. doctor Getúlio dies in Feb 2016. His headaches don’t get better and he decides to seek help from Dr. Caio Simioni who asks for an ANGIOGRAPHY. He finally has a diagnosis of Stroke and CEREBRAL VASCULITIS. She is again admitted to the Hosp. Samaritano where she undergoes pulse therapy and receives treatment with immunosuppressants. She feels sick, with the immunosuppressant, vomits and has dysentery.
-June 2016-She is depressed but still manages to travel alone for a month in Myanmar.
-August 2016-She moves to Lima, Peru, where she is only treated w / acupuncture with the Chinese, Dr. Pan. She reduces the cortisone from 40mg to 5mg all on her own.”
August 2016-She moves to Lima, Peru, where she is only treated w / acupuncture with the Chinese, Dr. Pan. She reduces the cortisone from 40mg to 5mg all on her own.”
And my dear friend Leila Alaoui died I went to the hospital and they do not have a Dr Getulio anymore, nome my friend Leila who called me to be present.
She came to my wedding in September 2015 in Brazil, and in January and February I lost my dear friend and my doctor died and I went to the hospital again.
Every day I see that anything that is emotional or spiritual it always make me fall down. So when I did not have it a doctor I have decided to go to Burma.
I wanted to go to Burma ( Myanmar) because of Vipassana end it came from there. The best thing I ever have done wants to learn about meditation and to deal with ourselves. I will keep writing a speaking to practice to come with yourself.
I will keep sharing everything that my mother has registered and my perception because the mind does not disappear.
I have ignored medicine, I and I respect but I also know they do not know so profoundly about the brain and the mind.
In this way we will discover, little by little in our lives, who we are.
My Coma and the Mind 5
My first coma was in Thailand, and it wasn’t even my first time there. And my mom said I stayed 30 days. Each time it seems to me that I am causing emotional things, and not knowing how to deal with my mind.
But I want to tell about what has long been supposed to tell.
First I see that every time it was related to feelings, and maybe spiritual.
Perhaps I should say that I have always been an atheist and have religious and philosophical friends in the world. But my grandmother said that “ I was the most religious because I wanted to love everyone, and she said that she was an atheist, and she ruled and respected everyone. “But I always felt lost and didn’t want to get stuck in any one.
I always considered that I was free from being prey to religion and I liked to read. And today it is easier to write than to read. I had many injuries to my brain.
But before my coma, I was dating a guy who said almost nothing else was true. But I don’t even want to focus on that. I mean that our mind will perceive through the mind. And the inner nervous began.
Gradually I should feel. And it was increasing my adrenaline and I went to tell Dr. Getulio, by email that I felt adrenaline, and I increased my gardenal.
There, in Thailand, I always said that it was my second home in the world. I had once been a volunteer teaching English to children, another year I had been working at a Mut Mee guest house when I dropped out of my PhD at the LSE.
I really wanted to go to Burma ( Myamar ), any year I tried I couldn’t until my coma.
It was the second time I tried to go there, because I had done Vipassana (10 days of meditation) in England. And they say it comes from there.
On that day, I was doing my visa and I started to feel energy, I needed to walk and breathe and women nurses came to take care of me. “It looks like you are having an epileptic seizure and should go to the hospital.” We went in and a doctor came, and I was fine and taking Gardenal. He told me to analyze myself, but I denied it.
I went back to an inn and I don’t know anything about it. My boyfriend took me to the hospital and called my parents to come.
My mother registered
“CRISIS September 2013 – enters a state of “epilepticus” in Bangkok. She is interned from the 2nd to the 20th of September at the St Louis Hospital in Bangkok, trying to control epileptic seizures. She has to be intubated to receive high doses of anticonvulsants (Depakote, Keppra) in addition to cortisone. Ruben and I are going there. When we managed to return to Sao Paulo, we stayed another week at Hospital Samaritano, when Dr. Getulio comments that, this time, the damage had been enormous. With schizophrenia of neurological origin, she undergoes treatment with clozapine with Dr. Euthymia Almeida Prado. doctor Getulio keeps Depakote and cortisone. It goes from 44 kg to about 60 kg. doctor Getulio is terrified and returns to Gardenal. Little by little, she recovers from the hallucinations and Dr Euthymia eliminates Clozapine, which is very bad for her. It’s almost like being reborn, except that you’re reborn as a teenager. She suffers from loss of neurons, from reading ability to cognition.”
I went back what I remember what always asks me what I saw in my Coma.
I saw myself in the hospital and talked in the language of Thailand and what I don’t know in that Coma. I argued about the treatment. Then I saw other planets, I went to a place under the earth and I saw my cousin and it was dark and a trip. It wasn’t bad, it wasn’t even burning it was looking for places. In my coma I was traveling in the world end of the hospital. I could even speak in Thai, I could change places of the hospital and ask about the treatment but I was in coma.
But when I felt myself stop on the black bed and on one side I heard people fighting. It was between these people, and I was quiet and confused about the discussion. This me in a bed and on one side people fighting, and on the other side still, but once a woman appeared to me and asked if I wanted to live and die. This woman was very calm.
I was surprised that she asked me if I wanted to leave or die. I was surprised enough to watch it and she said it was my choice. When I said I wanted to live she asked me why I wanted to leave
I said I wanted it because of my grandmother and my boyfriend at the time.
She made the people in the discussion disappear, she didn’t exist anymore. Suddenly she made a glass of glass and I saw my grandmother falling, and my ex-boyfriend was walking away from me. It wasn’t in a cruel way, she wanted to let me know.
That from my coma I remember. I remember I thought I was poisoned. I felt it for many years.
But outside of the Coma, I would tell everyone that I was poisoned.
I’m not an atheist like before, but still lost , but what sets me free. I prefer to call her the Tara of Buddhism. Like my Gata Dao, which I feel is the spirituality of Taoism.
Everything I saw in my coma happened when I was awake, my grandmother fell, and my boyfriend left me. But to this day I’m grateful that he even took me to the hospital, and I could have spent years with my grandmother.
Sometimes I have hallucinations but I don’t even think about medicine, because inside the hospital I even felt hallucinations. But I take medicine for epilepsy and other medicines. From hallucination, the best remedy is to meditate.
The best way for me is to meditate, now the hardest thing is to learn to deal with ourselves.
I share because I think we can all improve. Don’t abandon yourself inside. And if you can pay attention to the nature and feel gratitude for the sun, of the moon, and the ground. And meditate to stable where you are
Coffee is our life
As I say I’m feeling back to writing as we are, and a compassion for the world.
It was the second time I went to Colombia. This time I went to our friend Maruan’s wedding.
This trip was very symbolic of how I studied international politics and cognitive anthropology. Even more symbolic is a cafe.
Coffee comes from Africa, and goes to the world, goes through the Middle East, Europe and then arrives through America, and Latin America and Asia. Colombia coffee is selected so it’s wonderful. But thinking about coffee is incredibly profound as it is in Africa. So taking it I didn’t stop thinking about it.
This trip of mine was to see Maruan’s wedding, and his wife were born in Colombia, but their family is from Palestine.
Maruan picked us up at the airport almost midnight and he told me “let’s go for coffee”
I already thought it was to late to have coffee but I didn’t know how much traffic Bogotá has during the day. Of course we went for coffee and we loved it. I immediately had to use my mind off. We came into town at night and the next day I met his family.
I had the pleasure of meeting your parents and brother and his family. I went back to speaking in English and Spanish and French because when people have to immigrate and have to speak a new language
Before I thought it was important to know other languages and what was useful, but today I realize that it goes much deeper. If I hadn’t learned several languages when I was little, it would be even harder to speak again.
I say people who have children, what a stimulus to know several. If my parents hadn’t done learning several languages it would be more difficult to speak and write. I even had a speech therapist, but when I realized that if it was with other languages it would be more useful.
When I met Bassem, who is Maruan’s brother and is an anthropologist, he showed me around Candelária and got to know the places. So we started trying several cafes.
But the coffee comes from Ethiopia, it comes from an ancient tradition and a selection is made and there are several versions of coffee.
Legend has it that coffee was discovered in the ninth century in the Ethiopian highlands. The story goes that a shepherd named Kaldi noticed that goats became more active when they ate the fruits of a certain plant. And when he decided to taste these fruits, he also felt more energetic. I even heard of a story that showed that a priest put it to burn that it was a thing from hell. Then it became sacred.
Coffee circulated around the world, sometimes they used slaves to work.
Ô café circulated with me around the world. I learned about coffee when I was travelling, because I used to say that I was into tea. But when I was somewhere in Rome I learned about coffee.
When I was in Turkey and I went to visit my friend Nese in Istanbul, she took me to Another cafe, Bar. And in Palestine I drank coffee and always offered myself and ate more.
And I thought that in Asia it wasn’t the style, but when I was in 2018 in Vietnam I found out that they had coffee with eggs. I went and with prejudice but I loved it and it doesn’t even look like coffee. But coffee is always being colonized and decolonized. France that colonized or Vietnam and brought coffee. And I learned that even during the war he had to subsist on milk and coffee.
Thus, the land of the indigenous people was also colonized by Portugal and they exchanged slaves and made them drink coffee to work.
This trip was very symbolic for me and the world. I was doing my PhD at the LSE and it was about Israel and Palestine and I got very attached to the world and wanted a peace process. That was in 2011 and I gave up.
But at the LSE I chatted with my friend and over coffee. He is Israeli and knows Arabic and Hebrew because he refused to join the army. 1 year imprisoned inside Israel and denied the second time and spent 2 more years in Prison in Palestine. And I said,
“ If you speak Hebrew, and learned Arabic in prison, you have to do it.”
And I never forget what my friend said.
“And why don’t you do about farms and speak in Brazil, since you speak Portuguese and learn a language of the indigenous people.”
But even writing, since I can, touches me inside. Every day I get better I think it’s even unfair to the world.
But, I try to meditate and open my mind that I shouldn’t even think anything negative. Think like nature .
We are like coffee, sometimes for nature, sometimes for value, even for religion, sometimes for the economy, sometimes for slavery, sometimes for colonialism.
Then I begin to realize that it is part of our history.
Mas a parte mais difícil é aceitar nossa existência como somos. Mas como nós, o agente é como do café está mudando, mudando de país, mas dentro daqueles que evoluem e tentamos ser melhor. Temos que evoluir dentro de nós mesmo.
But the hardest part is accepting our existence as we are. But like us, the coffee is changing, changing countries, but we chose evolve and we try to be better than before. We have to evolve in our mind.
Red is life
When I thought of writing, it reminded me of Dr Getulio. I already had so many blogs and told of the stories of the people I met
doctor Getulio Rabello used to tell me “You who speak well, write but I am the doctor, if you wrote about what you feel and what happens it would help me and the other patients.
There’s no way not to forget how Getulio was, and I always ran away from medicine.
But even if he wasn’t present, in my mind and so many people who knew him.
Now writing what happened to me is difficult to write, but I won’t give up trying, it’s not a struggle.
Because it is fundamental not to be a fight. Every fight is a fight with another, but every time I see it, it’s trying to make peace. That’s how I see any fight, it’s an internal fight and they’re very stimulated.
So, I’ve been thinking about it. There are tests in schools, in college, in childhood, and I always get into discussions. And when I ended up in the hospital it was related to a person who started to get more irritated and I ran away. Harder when I lost close friends and Dr. Getúlio.
I remember once playing the piano and doing alternative medicine. I was playing, and I don’t even know very well but it was giving me adrenaline and the energy rose, I felt that my hand was on the right arm and it went up and down with my face on the piano.
I went to Hospital Samaritano in 2013 because of a fall on the piano.
I remember it very well, because my parents were there, but Dr. Getúlio got angry when I told him I was without Fenobarbital . He asked to speak with me alone.
I was calm, I was already calm. And Getúlio told me “Julieta, you are not going to be my patient, and if you don’t take medicine seriously, you can choose and you will want to destroy yourself. You will make your choice. ”
I stayed with Getúlio, but I was writing my book about my discussions in the Middle East and the rest of the world. This adrenaline increased a lot. Neither mine marked by the face marked by falling face down on the piano, it was the adrenaline of my rush in our life, in my mind
And my arguments always got me in. But one day I thought of Getúlio and I walked out of nowhere and asked the clerk is Getúlio here? Maybe a spirituality but he kept thinking about it.
I entered the hospital, asked the secretary, is Getúlio here? She was silent and I said “Getúlio died.” . She agreed and I went into the hospital and asked where the family was. I atheist went up and saw Janete who was Getúlio’s secretary, and his wife his, and a doctor , that I do not know.
It knocked me over, and there was my stability person. Getúlio, I had already realized that almost everything discouraged me because emotional things
So, I’m sharing, how many internal wars when it seems calm, it’s far from peace. Even when I meditate and when I hear voices, hallucinations, dreams. Then I realize that I realize that we have to leave our voice of silence.
So when I lost Getúlio I went back to the hospital and there wasn’t even a doctor and in search of knowing what I have. And every time I had to see my blood. But red is very important to understand
But it’s not easy to let yourself be silent, but I realize that it helps me to do anything that has freedom and not prove anything. Draw, the garden, the sky, and prove nothing to yourself. Let things take their time.
I think about the red I love and try. Before I thought about politics, later it was reported that it was considered red.
But red was important because many believed in communism but red was considered part of art, many religions, sexuality, Asia etc.
In the Shinto religion of Japan, In Christianity, red is associated with the blood of Christ and the sacrifice of martyrs. In the Roman Catholic Church it is also associated with Pentecost and the Holy Spirit.
It is particularly associated with the benefits of practicing Buddhism; achievement, wisdom, virtue, fortune and dignity. He was also believed to have the power to resist evil. In China, red was commonly used on temple walls, pillars and gates.
And today I have a house with red, and almost like a temple. The place where I meditate and meet people on the same path.
When Dr. Getúlio passed away, I saw Dr. Rodrigo for the first time in 2016. I already had the second coma, the revolt with medicine, like medicine, hallucinations, pain and also. I also abandoned medicine, and without a Doctor. But the last time my grandmother lived in Ubatuba, I had taken Gardenal out and went to Samaritano in 2020.
Then I discovered Dr. Rodrigo Holanda, who is calm and put up with my explanations and I consider my thoughts, and he is the doctor who brought me back. I had seen him when Getulio died, but years later he became my doctor.
But that year my grandmother, without saying a word, left me as a gift in front of the sea. And from here I never fell. I start to learn new things and try every medication.
In those years I got to know Dr Rodrigo more and I didn’t stop taking medicine but I ended it when I had an internal war. Accept yourself.
But for me, what now I feel is every time I feel the adrenaline I take a breath and watch how the blood is red and floats. It doesn’t matter inside or outside the hospital. But I don’t abandon it because I know I have to make a balance between the brain and the mind.
I know that blood is like impermanence and it moves. And I see that it is a mourning with myself. With each meditation I have to
observe. And in a way that the way the red one I know I’m alive. Watch yourself.
And life is the most sacred thing we have. We just have to abandon our war with ourselves. And so red is inside and outside. So come visit me 🙂
With Love , Jules
The Brain and My mind 4
I want to share, from now on I managed to get back to how I am. Not even linking to negative thoughts.
Seeing share everything I spent a lot in hospitals, and with many brain injuries. And I’m sharing it with everyone because I feel like I’m coming back.
I managed to go to the hospital alone this time. I write to you not to lose hope, and what else do we have to learn from ourselves.
We are in the year 2023. And with deep gratitude.
So I’ll tell you, that my mother registered it.
- Feb and Mar 2016 – Feels severe headaches and sees lights for about 3 weeks. Exchange ideas with Dr. Getulio but refuses to return to his office to redo the exams. She says that she “never goes back to a hospital or is treated using Western medicine, only Eastern medicine”. doctor Getúlio dies in Feb 2016. His headaches don’t get better and he decides to seek help from Dr. Caio Simioni who asks for an ANGIOGRAPHY. He finally has a diagnosis of Stroke and CEREBRAL VASCULITIS. She is again admitted to the Hosp. Samaritano where she undergoes pulse therapy and receives treatment with immunosuppressants. She feels sick, with the immunosuppressant, vomits and has dysentery. -June 2016-She is depressed but still manages to travel alone for a month in Myanmar. -August 2016-She moves to Lima, Peru, where she is only treated w / acupuncture with the Chinese, Dr. Pan. She reduces the cortisone from 40mg to 5mg all on her own. 2017 – Watershed Year: -17/03/2017 – with a lot of pain and shocks in the legs and feet, loss of vision and tightness in the throat, and after much insistence from us, he arrives in SP on 03/17, Friday, taking 40 mg of cortisone and 2 Gardenal at 100 mg/day. She is hospitalized at Samaritano where she redoes the CSF, MRI, EEG, blood, urine tests but nothing new is found.
- 03/20/2017 – We were discharged by the hands of Dr Fernando Freua who says he has not found any activity of Vasculitis or stroke and suggests us to continue with outpatient treatment. However, Julieta is not well at all and, although she hates the Hospital, she is disappointed with the discharge.
- 03/21/2017 – At the suggestion of Dr Karen Fernandes, from Dr Getulio’s team and who had been treating Julieta, we decided to consult Dr Eduardo Mutarelli (H.Sirio Libanes). Dr Mutarelli examines and listens to Julieta for 1h50. Juliet in complete mental confusion. Examines, talks about cramps, prescription Quinine, Pregabalin and asks to see tests done at Samaritano in 2016. Long appointment but impossible to talk to Dr again. Mutarelli, with assistants only. -03/28/17-she wakes up at 3:30 in the morning complaining of a lot of pain in her leg. Medicines: phenobarbital 250 mg and cortisone 20 mg, dipyrone, tandrilax, tanderil
03/30/17 – return to Mutarelli and RETURN IN THE CASE. Dr Mutarelli says that Julieta does not have cerebral vasculitis and probably never has.
- 04/10/17 – Given the difficulty of talking to Dr Mutarelli, we decided to go back with Dr Karen. Juliet worse and worse. She can’t see, rolls her tongue, feels pain in her leg and there is no diagnosis. Until the day
- 04/15/17 – Julieta starts off in the morning. She is taken to H. Samaritano where she remains for 34 days, 25 days in the ICU, 10 days intubated. She goes into a state of epilepticus, gets two hospital infections, a leg bends, the foot turns inwards and she is forced to do physiotherapy on the orthostatic board. Then she is obliged to use an orthosis. She needs to relearn to walk, to talk. She completely loses her memory and struggles to recognize people. During the rest of the year, she undergoes five sessions of pulse therapy with cortisone and cyclophosphamide. Ends the year with 690 neutrophils.
- 5/26/17, at Dr Karen’s request, redo the Angiography exam. This time, at her request, she makes Dr. Paulo Puglia who is emphatic: Julieta DOES NOT HAVE CEREBRAL VASCULITIS. And, just like Dr. Getulio, suggests that she must have an AUTOIMMUNE ENCEPHALITIS. It remains to find the trigger. 2018/2019 – years without significant crises CRISIS 2020
- 01/17/20- 01/22/20 – H. Samaritano (6 days)
Julieta feels severe headaches, and in the midst of a lot of mental confusion, she is admitted to H. Samaritano again, where she stays until 01/22. She has many MRI’s and EEG’s and is again subjected to pulse therapy with cortisone, various anticonvulsants, etc. Upon her arrival, in 4 hours the electro registered 90 electrical discharges, which according to Dr. Rodrigo, already configures status epilepticus. In 12 hours, discharges dropped to less than 50. MRI, in turn, showed no new lesions. doctor Rodrigo thought that this crisis was due to medication withdrawal and Julieta herself admitted that she was stopping taking the medication. He has already explained to her that if this is repeated, she may enter an irreversible crisis”
I share it with you all because I can write, speak and even remember things from the past and present. Those things that were significant.
How to take medicine and everything I learned to keep everything I learned from the West and Asia. Everything made me feel better.
Meditating calms me down. My connection that came back and my friends that I found again. But meditating is from a depth, and it doesn’t make us focus on a thought that we get stuck.
Now I take Rituximab and I meditate. Both my doctor Dr. Rodrigo Holanda was surprised that I was doing so well on this appointment.
And I’ve been there for years, always going with someone, and I couldn’t go alone. But this week I managed to do it myself again. As if you are incapable, but don’t think it’s negative to go alone. We were born alone, and we live alone, what we need is to learn what is the freedom of our existence.
Mas aquela incapaz, como sempre foi, dessa vez me lembrei de como a conheci.
Last year I was talking to a Tibetan lama and I told him that I have hallucinations and that I have brain damage. What can I do.
He told me “We all hallucinate, what the other sees is not what he hears. “I didn’t even like it anymore, and I thought it was silly. He paused and said, “When you have damage to an area of the brain, use a part you haven’t used. “
This gave me hope, but I went to ask the truth that we had parts that we didn’t even use. I was told it was true, my neurologist friend told me.
There came hope, and I tried. And then it made me meditate.
There in meditation, I began to know myself. And suddenly I started to meditate not the course, because I had already done it, but with a depth. Sometimes I was lazy, but I understood that I needed to meditate every day. And suddenly friends kept appearing and calling me. Suddenly and monks, lamas and science
So I’m even grateful for the fall, and I share it because we’re getting to know each other along the way.
But how can I say I’m calm? No, sometimes I get angry, depressed. But sometimes as I talk to my friends, sometimes we are the same people.
When it comes to people who let me down, I start to think it’s like a mirror.
Thus, an illness, such as an epileptic seizure, my immunity is low, etc. Everything is a mirror and who sees.
Everything is the value of knowing who we are.
I wrote to everyone like me, be grateful and don’t even waste time with a mirror, and I share my story because your path you will always decolonize your mind. I had to decolonize myself from medicine, today I am grateful for medicine and meditation. And all the people I cross makes me find us. All of this mirror is what we don’t accept, it’s a part of us that’s still inside, let us accept it.
My Brain , my mind and Coma 3
I’m so thrilled to write so much and be able to share, how my mind has fallen. I can show you that we can walk the path. And grateful you read it. But I have to say it slowly, because at one time I couldn’t even read, talk, walk, or even remember things.
But we have to accept our mind, I also had to learn to be patient. I can’t even write, nothing is fast. I have a great gratitude for life when I am present.
And I see that when I want to tell my blog, he suddenly arrests me and does not think about anyone’s rule in my head, it even causes me pain, and I hallucinate. So I stop and meditate because it makes me aware.
It’s the year 2023, but my downfall lasted for several years.
The last time I lived in Europe was between 2007 and 2011, but I traveled around the world, but I lived in London. But I entered the LSE in 2008 and stayed in 2011. I won a scholarship to do my PhD. My doctorate was a peace project between Israel and Palestine. In London I made new friends from around the world. From there I also joined a yoga group and started to enter the path of meditation and I didn’t have much patience, but I became friends with a Tibetan Lama. Lama Lobsang spoke the words that will mark me.
It took so long and my mind went blank. We ate in silence. He had spoken a mantra and when it was over he told me to go into the room. I took a few steps and he said “Do you remember when you were angry? “ My mind went back to being scared, angry and angry at me. Lama Lobsang said “One word, you become anger, fear. You have to calm down, and meditate”. I kept thinking that that was nonsense, and my prejudices.
I was so lost in my brain. But I always forgot that I was so desperate and Lama Lobsang invited me to have a lunch. But I felt that I shouldn’t go.
I arrived and started telling about my suffering and what I saw in my life. I was saying a million things and he told me and told me to go to the kitchen. And he told me to be silent. I was kind of disgusted, but I stayed quiet and watched him cook super slowly and doing a mantra.
I wanted to volunteer to teach English in Asia, I found out and went to Thailand in 2009. There I began to discover a place that enchanted me.
Then I wanted to abandon my doctorate because of Israel and Palestine. The Teacher said “Why not do it about Buddhism? “
I wanted to escape and went to Dharmsala. I kept running away from everywhere, from India I went to Italy and I counted in the posts. I share in my post , a friend of the inn that Thailandia. Julian sent me a message if I wanted to be a hostel attendant. I went, I always felt lost, but I went and I felt at home.
I loved so deeply, and thought it was like my second home in the world. I had already stayed there knowing the world. But one day, my foot got stuck. It simply stuck and I went to Brazil.
But when my foot got stuck I was second and I got better traveling and I was traveling through Brazil and Colombia. When I was told to make a book.
So I have even learned to understand time. I write agitated to write in a book. And dealing with a thousand things in the world, and that’s how I saw it.
I have been writing from my travels, and have been helped by my friends, and a boyfriend. And I wanted to take the book to my friends. But I wanted to go to Burma, and when I was lining up to apply for a visa, I started to feel epilepsy. I was full of emotions, and nothing to be present
A nurse saw me on the street, in Thailand, they will come, and they said that I should go to the hospital.
From there I remember few things, but it was my first coma. My mother said that I spent 30 days in the hospital in Bangkok.
So down. That’s what my my wrote.
“ CRISIS September 2013 – enters a state of “epilepticus” in Bangkok. She is interned from the 2nd to the 20th of September at the St Louis Hospital in Bangkok, trying to control epileptic seizures. She has to be intubated to receive high doses of anticonvulsants (Depakote, Keppra) in addition to cortisone. Ruben and I are going there. When we managed to return to Sao Paulo, we stayed another week at Hospital Samaritano, when Dr. Getulio comments that, this time, the damage had been enormous. With schizophrenia of neurological origin, she undergoes treatment with clozapine with Dr. Euthymia Almeida Prado. doctor Getulio keeps Depakote and cortisone. She goes from 44 kg to about 60 kg. doctor Getulio is terrified and returns to Gardenal. Little by little, she recovers from the hallucinations and Dr Euthymia eliminates Clozapine, which is very bad for her. It’s almost like being reborn, except that she’s reborn as a teenager. She suffers from loss of neurons, from reading ability to cognition.”
It was even difficult to leave the hospital, I was not conscious. And so I had to be allowed to fly and be conscious. I even went from a hospital in one country to another hospital in Brazil.
For my parents it was even more difficult, than for me. But from my coma, I remember that one day I saw a woman. I remember I was in bed, there were people on the other side and they were arguing, but on the other side I suddenly saw this woman. She looked at me and suddenly asked me if I wanted to live. And I said “yes, because of my grandmother, and my boyfriend” and the people fighting will disappear, and I saw my boyfriend leaving, and my grandmother would fall and it would be difficult to walk
Everything happened, in my coma, but then it happened in my life back in Brazil. But life happened. As the mind should already know.
I returned to Brazil a long time ago, and spent some time away, incapable and revolted.
But the temple floated and I managed to get the treatment, because in the end we didn’t even know very well. We don’t even know much yet.
I tell it daily, imagining what conscience we have, how similar we are. And when we see the base of ourselves, I must accept it as we are.
But I try slowly, slowly, because I try to float to share, how I am managing to share the peace of the way. So because neither the doctors nor I still don’t know who I am.
The Brain and and my Mind 2
Thank you for reading. They make me ponder the flow of my life. And you realize that so many things realize that when I write a lot, it activates the brain too much. As my father said “I write slowly, and few things come. “ And that I see, makes me focus, but not write si much. Than I can calms the mind.
I’m going to tell you slowly, because I want to share what my mother clearly left from what she saw, but I see it in a different way. But she saw me very sick. And I think about the facts I think about. This I confess makes me analyze and tears come out. I’ll tempt you how time circles.
my mom says
“In these 3 years she has been doing relatively well and has had very few seizures. He comes to Brazil a few times for a consultation, but the MRI shows no major alterations. Always very reluctant to take the anticonvulsant, the only medication for continuous use prescribed by Getulio.”
For the photos that help me, remember the time and the facts. And how to get to know the trips that will mark the world.
In 2008 I started doing my Masters at the LSE in London and it was on cognitive anthropology. And Ma I see that I traveled around India in September, October and it helped me inside and without seeing. All of this makes me ponder.
I remember I went to India and we happened to go to Dharam Sala. When I arrived there was a Dalai Lama class. I didn’t even want to do it, but Haiko told me “But since you say you don’t have prejudice, let’s see?”
I was doing my Masters in Cognitive Anthropology. And I was already thinking about my PhD. But there in India there was also an internal prison that I couldn’t even understand what it had. I was already terrified that I had gotten sick, in my brain.
I went to see the Dalai Lama’s class and I was moved by so many lamas from other countries and cultures. Haiko and I spoke in English, but I heard two Brazilian women who were next to me.
But the Dalai Lama arrived and everyone was amazed, and his first word was “don’t be a Buddhist, respect all religions, respect what’s inside you”. It touched me, but it didn’t convince me that I was still trapped by the political stuff.
But I say that because it started in me, in New York and thinking about politics, the control of our mind. And I arrived 10 days before September 11, 2001.
All of us foreign students arrive at the university earlier. Discover my friends and all religions, and agnostics and atheists. We begin to realize what the power of religions and their politics is like.
Then, as I had already received a scholarship to study in college, a few years passed and I found out that I had another scholarship to study in Amsterdam. This Scholarship was about international politics. This was in 2004.
I remember my friend Caroline, who is Swiss and was studying psychology, and she said to me “you already won a scholarship to come to the United States, and you already want to run away to go to the other country? You are running away from you.”
Funny, because this sentence was said by my friend from Switzerland, as it was also said by a friend from Israel. And I would go to another country. Just as my friend from Palestine told me “Because he’s still running away from his doctorate” Just as I also wanted to run away from my first marriage, which is in Holland. Just like I wanted to leave London, and I even wanted to escape from Vipassana.
The colleges, and schools of the world made me learn to argue. Then I knew that I wanted to argue with the person responsible for Vipassana.
I remember when I went to explain all the philosophies, and through the mind. She listened in silence and said “Your enemy is your best friend, it’s you”
I stayed just to prove it was easy. It wasn’t, but it was wonderful.
But what I couldn’t escape were my comas. Then I remember Dr. Getulio who said to me “Julieta, you who write, why don’t you tell, about.“
In a coma, I would travel through the hospital, I would travel to another planet. Then you have no way out, and sometimes you come back.
So I write that we have to get to know each other. Discover peace and compassion.
But as my father used to say, I count slowly. But we can improve ourselves as we are.
The brain and my mind 1
I’m going to share my story of how when I was classified as a patient and to so many who look up to me, my brain was so wrecked and broken. And I know that there are even people who see me, as I was. But many see me that I am incapable of everything. But I tell you why, falls make me learn about life.
In any case, every time I wanted to see countries along the way, I thought that seeing them along the way would suggest the meaning of life. Even before and after being a patient in the Hospital.
But I want to write, as I still can, and as I perceive how it seems to me to be reported by the brain. So I’ll break down how I was ranked in various ways.
Don’t think that I don’t value medicine, it’s the opposite. It’s the way I understood medicine, like alternative methods and cultures. So I discovered how everything is in our mind. So I’ll tell you slowly.
I started to feel different things and I was 26 years old. I was traveling in Morocco with my husband at that time Haiko Ballieux .
I wanted to go to Morocco for a while. I had left to visit the country of 3 very important people in my life. When I moved to the US in 2001, I met Leila, Mounia and Mustapha in college. All those who will make me teach things in my life. So I wanted to go and see what it was like there. I managed to go there in 2007 .
When I arrived in Marrakesh, Mounia had already done many beautiful things, and had even arranged a trip to the Salar. And I also wanted to go to Rabat, and to Casablanca. As Haiko had to go back to London I decided that I would get to know the country better, as I was getting enchanted.
I continued on to Chefchaouen and was blown away. .
I had been traveling alone for some time and the gentlemen invited me to travel in their car.
He was buying art from Morocco to sell in Spain and he thought it was dangerous for me to travel alone and that he might show me places along the way. I wasn’t afraid, but I thought it would be interesting to see the path, and Ceuta.
But when I was loving traveling around Morocco and the culture, I crossed over from Morocco to Spain. I was in the car and I think the beginning of the warm-up of the mind must have started. I’ve already stayed in a hotel and wanted to go back to Morocco, but without a car.
Going on foot was easy, but crossing the African border into Europe is a shock. From the side of Europe come the Africans who are desperate because nothing has worked in Europe. And when I crossed I saw Africans desperate for a better life on the other side.
I found a taxi and stopped in a city, I don’t remember the name of the city. I just kept thinking about what the border was like. I remember that at the border I was first in the Spaniards’ car, we were white and we didn’t even need to wait for anything, we didn’t even see the black Africans anymore. Already on foot I saw the black Africans and they told me that I should go ahead. I said I was the same as everyone else, but a man said to me “I think you don’t know the reality. “
I couldn’t even say anything because, among whites in Brazil and throughout America, and Latin America, we know how much discrimination there is, and in Europe. I had lived in all these areas of the world.
I remember wanting to stop traveling and go back to Marrakesh. When I arrived I told Moon everything, and that I came by bus and people don’t even respect traditions. The time of Ramadan had begun.
That night I went to sleep and with a thousand thoughts, I started to feel like I didn’t know what was going on in my head. I remember wanting to tell Moon, but getting in the way in the middle of the night. I was so confused I didn’t know what it was. I was afraid, because it seemed that he couldn’t get away from me. Because it happened in the middle of the night.
I started feeling a strong shock in the head and discovered involuntary movements in the fingers of one hand. And so I erased what erases you and the next day I told Mounia.
When I got back to London, I was on the flight and my right hand started moving. Next to me was a doctor, and he asked me if I took the medicine. I told him everything, I never have to take medicine. He told me that I should go see a doctor
I just saw the place of public doctors. First a general doctor came, and I had to tell him what happened, I told him and he called the second one and I had to repeat what I told him, he called the third doctor and told me that I needed to go to the hospital. That is, he realized it was a neurology case.
It made me desperate.
In October 2007 I was admitted to St Mary’s Hospital, in London, where they did an MRI that showed demyelinating lesions in the brain. I fell asleep in the Hospital for the first time.
I go against the hospital’s instructions to collect cerebrospinal fluid, leave the hospital and not take the prescribed anticonvulsants. I had even asked Haiko not to tell my parents.
I started looking for alternative medicine treatments.
But in 2008 and I was talking to my mom, and my Skype words wouldn’t come out. So I wrote it down. It was calm, but my mother bought it quickly to start seeing me sick.
As I left my mother’s writing
“ 2/14/08 – She is speechless while talking to me on Skype. He arrives in Brazil on the same night and is admitted to Hospital Samaritano, where he stays from 02/15 to 02/26, under the care of Dr. Getulio Rabello, neurologist. There she undergoes all kinds of tests and nothing wrong is found, but she already leaves with a slight sequel in her speech (exchange of syllables) and Dr Getulio even suspects Multiple Sclerosis.”
That made me desperate, taking the exam, touching your body, your head, etc.
But I don’t even want to talk about exams. I want to tell you about the positive things. Because I’m learning how many beautiful things we learn through the falls.
It was even in the hospital, I learned that I was accepted for my master’s at the LSE, I wouldn’t have learned cognition. Nor would I have fallen and gone to India and learned Buddhism and meditation.
But I also want to tell slowly because I will be classified with several diseases, and I have also been in the hospital when I didn’t take medication for Epilepsy, and even when I didn’t take it. I already lost talking and walking and coming back. Forget things and remember. I’ve had hallucinations, pain, etc.
But I’m telling little by little that I’m even happier and better than I fell. So every second I breathe, I already see my life. Almost everything is here you need to break free like me,