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.