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