Nothing lives forever, including us.
Sometimes a bad day makes you feel that you had a tough day and nothing else is worse than that moment or sequence of moments that made you feel bad on that day. A discussion with a loved one or an important friend that you consider a lot, for example, provokes your sadness and fear that maybe you aren't going to talk with this person anymore. But how bad or tough it is? It depends a lot on your reference, mostly your momentum reference, even if you had the worst moment in your life sometimes you forget about it. What matters is what is happening at that moment. Also, it depends on the amount of experience of a person dealing with tough moments. If you already dealt with something with similar aspects you can use it as a reference if you are cold enough to remember that. I know that many times people forget the past and prefer analyzing that moment compared to a happy previous moment of that tough moment. It reminds me a lot of when you enter an emergency room and the nurse asks you on a scale of 1 to 10 how much pain you feel. For me, that is always challenging because I feel lost in managing that type of judging. After all, I try to compare it with the moment that I felt more pain in my life in a constant way for now I couldn't find another moment like that. That type of pain brings me to a moment of my life that didn't last one or two days, but at least one year, at least that acute moment, because that situation has been part already of my life since then.
Às vezes, um dia ruim faz você sentir que teve um dia difícil e nada é pior do que aquele momento ou sequência de momentos que o fizeram se sentir mal naquele dia. Uma discussão com alguém amado ou um amigo importante que você considera muito, por exemplo, provoca tristeza e medo de que talvez você não vá mais conversar com essa pessoa. Mas o quão ruim ou difícil é isso? Isso depende muito da sua referência, principalmente da sua referência momentânea, mesmo que você tenha tido o pior momento da sua vida, às vezes você se esquece disso. O que importa é o que está acontecendo naquele momento. Também depende da quantidade de experiência que uma pessoa tem em lidar com momentos difíceis. Se você já lidou com algo com aspectos semelhantes, pode usar isso como referência, se for frio o suficiente para lembrar disso. Eu sei que muitas vezes as pessoas esquecem o passado e preferem analisar aquele momento em comparação com um momento feliz anterior àquele momento difícil. Isso me lembra muito quando você entra numa sala de emergência e a enfermeira pergunta em uma escala de 1 a 10 o quanto de dor você sente. Para mim, isso é sempre desafiador porque me sinto perdido ao fazer esse tipo de julgamento. Afinal, tento compará-lo com o momento em que senti mais dor na minha vida de forma constante e, até agora, não consegui encontrar outro momento como aquele. Esse tipo de dor me leva a um momento da minha vida que não durou um ou dois dias, mas pelo menos um ano, pelo menos aquele momento agudo, porque essa situação já faz parte da minha vida desde então.
I remember once reading a post, or some posts from @intishar mentioning a problem in his family. As we get older, things happen to us and our family members, especially parents who get older quickly than us for logical reasons. That figure that always takes care of you now needs your help. So one thing that I remember from his post is that "we don't know the day after, life is unpredictable", at least was my interpretation of his words. And yeah that's something that I know since I am young, around 5 years old. My mom has a couple of autoimmune diseases that affected a lot her with many days in bed and also her skills as a mother. I still talk about that during my therapy and that affected the whole family including my brother and father. But anyway, I got used to getting a mother sick and in my mind, it would be normal to see her die at any moment, well she is still alive by the way, and in good health within her capabilities. However, in 2005 something happened to me, that I mentioned already at least a couple of times around here. I got sick as well. But it wasn't a virus, a bacteria, or even a sporadic urinary infection. I got hospitalized because of that 3 times within a year, with an average of 10 to 15 days each time. Imagine a 21-year-old guy finishing university, with that. It could be worse I admit the situation but it still is something that has scared me until now. At first, I thought that was just an orthopedics problem, I used to play a lot of football/soccer, so it was normal for me. I went to different doctors with this pain in the junction of the right foot and the leg, some of them just said that was tendinitis. Until one day my foot was white like snow, and a weird feeling of a small vibration. I showed it to my mom and we went to the emergency, I asked for an orthopedist when he saw it he told me that it wasn't an orthopedics problem and asked me for an echo Doppler exam of my leg, a type of ultrasound. There they concluded that I had an inflammation in my arteries called vasculitis with small clots. They started to investigate with some markers and asked me if I used any type of drug, including marijuana, or had AIDS or other viruses. But nothing came out of the results. It was bad that time I had to stay from December 20th to December 30th (I remember that because I was afraid of spending New Year's Eve also in the hospital but I got out one day before). The treatment worked with inflammation, corticosteroids, and anticoagulants. After that, I got an Angiologist to follow up with me. He decided to stay with anticoagulants for 6 months and if there was nothing else I would stop taking it. I was better, but still, my leg hadn't recovered, I was still limping and couldn't run. After 6 months I stopped the medication and a couple of weeks after my leg got worse and I went back to the hospital. I had more clots in the same leg and one was big behind my knee. My stay in the hospital was longer since I had to pass through a procedure using a catheter. That's the same procedure that they use for heart attacks to unblock arteries in the heart, but in my case, they went with the catheter to my leg. At that moment I had a visit from an immunologist and he made more exams and detected a marker called anti-phospholipids antibodies, characteristic of the Anti-Phospholipid Antibodies Syndrome. Those are the same antibodies that appeared in some COVID patients during the pandemic, it attacks anything that has phospholipids, or better any cell of your body, but luckily they were in my blood so they were attacking the first cells that they found which were the cells of the vessels walls creating these clots. Well, I improved after so much time and they decided that I was going to stay on anticoagulants for life. I accepted of course, but I still went to the hospital and passed through all the experiences again. That 3rd experience completely exhausted me, after all of this we started to lose a bit of hope, and other feelings started to bug us such as "this will never end", and adding also a beautiful comment from a doctor that probably I would need to remove my leg. At that moment luckily someone helped me to go through those feelings which was my psychotherapist whom I went through many years after these episodes.
Lembro-me de ter lido uma postagem, ou algumas postagens de @intishar mencionando um problema em sua família. À medida que envelhecemos, coisas acontecem conosco e com nossos membros da família, especialmente os pais, que envelhecem mais rapidamente do que nós por razões lógicas. Aquela figura que sempre cuidou de você agora precisa da sua ajuda. Então, uma coisa que me lembro da postagem dele é que "não sabemos o dia seguinte, a vida é imprevisível", pelo menos foi minha interpretação de suas palavras. E sim, isso é algo que eu sei desde que sou jovem, por volta dos 5 anos de idade. Minha mãe tem algumas doenças autoimunes que a afetaram bastante, com muitos dias na cama e também suas habilidades como mãe. Ainda falo sobre isso durante minha terapia e isso afetou toda a família, incluindo meu irmão e meu pai. Mas de qualquer forma, me acostumei a ver uma mãe doente e, em minha mente, seria normal vê-la morrer a qualquer momento, bem, ela ainda está viva, aliás, e com boa saúde dentro de suas capacidades. No entanto, em 2005, algo aconteceu comigo, que mencionei já pelo menos algumas vezes por aqui. Eu também fiquei doente. Mas não foi um vírus, uma bactéria ou até mesmo uma infecção urinária esporádica. Fui hospitalizado por isso três vezes em um ano, com uma média de 10 a 15 dias cada vez. Imagine um cara de 21 anos terminando a universidade, com isso. Poderia ser pior, admito a situação, mas ainda é algo que me assustou até agora. No início, pensei que era apenas um problema ortopédico, eu costumava jogar muito futebol, então era normal para mim. Fui a diferentes médicos com essa dor na junção do pé direito e da perna, alguns deles apenas disseram que era tendinite. Até que um dia meu pé ficou branco como neve e com uma sensação estranha de uma pequena vibração. Mostrei isso para minha mãe e fomos para a emergência, pedi um ortopedista e, quando ele viu, ele me disse que não era um problema ortopédico e pediu um exame de eco Doppler da minha perna, um tipo de ultrassom. Lá concluíram que eu tinha uma inflamação nas artérias chamada vasculite com pequenos coágulos. Eles começaram a investigar com alguns marcadores e me perguntaram se eu usava algum tipo de droga, incluindo maconha, ou se tinha AIDS ou outros vírus. Mas nada saiu dos resultados. Foi ruim naquela época, tive que ficar de 20 a 30 de dezembro (lembro-me disso porque tinha medo de passar a véspera de Ano Novo também no hospital, mas saí um dia antes). O tratamento funcionou com inflamação, corticosteroides e anticoagulantes. Depois disso, consegui um angiologista para me acompanhar. Ele decidiu permanecer com os anticoagulantes por 6 meses e, se não houvesse mais nada, eu pararia de tomá-los. Eu estava melhor, mas ainda assim minha perna não havia se recuperado, eu ainda estava mancando e não conseguia correr. Depois de 6 meses, parei o medicamento e algumas semanas depois minha perna piorou e voltei ao hospital. Tive mais coágulos na mesma perna e um grande atrás do meu joelho. Minha estadia no hospital foi mais longa, pois tive que passar por um procedimento usando um cateter. Esse é o mesmo procedimento que eles usam para ataques cardíacos para desbloquear artérias no coração, mas no meu caso eles foram com o cateter para minha perna. Naquele momento, tive a visita de um imunologista e ele fez mais exames e detectou um marcador chamado anticorpos antifosfolípides, característico da Síndrome dos Anticorpos Antifosfolípides. Esses são os mesmos anticorpos que apareceram em alguns pacientes com COVID durante a pandemia, ele ataca qualquer coisa que tenha fosfolipídios, ou melhor, qualquer célula do seu corpo, mas felizmente estavam no meu sangue, então estavam atacando as primeiras células que encontravam, que eram as células das paredes dos vasos, criando esses coágulos. Bem, melhorei depois de tanto tempo e eles decidiram que eu ficaria com anticoagulantes para o resto da vida. Eu aceitei, é claro, mas ainda assim fui ao hospital e passei por todas as experiências novamente. Essa terceira experiência me esgotou completamente, depois de tudo isso começamos a perder um pouco a esperança, e outros sentimentos começaram a nos incomodar, como "isso nunca vai acabar", e também adicionando um belo comentário de um médico de que provavelmente eu precisaria remover minha perna. Naquele momento, felizmente alguém me ajudou a passar por esses sentimentos, que foi meu psicoterapeuta, com quem passei muitos anos após esses episódios.
I survived and didn't lose my leg but still the months after these episodes had many fears and recovery steps. Many clots couldn't be removed, so I had minimum blood flow in my leg, so I was climbing a lot. The doctor told me to force me to walk every day and when I could start running. It was difficult because of the lack of blood flow all the time my muscles started anaerobic respiration so my muscles started to burn all the time. In addition, I had neuropathy, and the neuron's terminations also didn't get blood so they started to complain of terrible pain, the pain looked like needles being inserted in the region and I couldn't get rid of it easily, changing position? nope, taking ibuprophen? nope, they gave me Tramadol and other controlled painkillers but nothing was working with the pain. I can't remember any pain bigger than that. I already broke my fingers and had other types of pains, but that one hunts my nightmares. The only thing that helped was taking anti-depressants because their action is in the neurons that were the cause of the pain. The pain got away after starting the treatment with two different treatments. I was getting better but I still went to the hospital a couple of times with "false alarms". I was scared and any new feeling in my leg made me go to the ER but it was nothing. After some time I started to run still limbing. Next year it completes 20 years of the first episode, I run 98% normally ( I still feel some muscle burning and my right leg is weaker than the left one) and I created alternative blood flow, the last doppler showed that I had alternative vessels feeding my leg.
Eu sobrevivi e não perdi minha perna, mas ainda assim os meses após esses episódios tiveram muitos medos e etapas de recuperação. Muitos coágulos não puderam ser removidos, então tive um fluxo sanguíneo mínimo na minha perna, então eu estava subindo muito. O médico me disse para me forçar a andar todos os dias e quando eu poderia começar a correr. Foi difícil por causa da falta de fluxo sanguíneo, o tempo todo meus músculos começavam a respiração anaeróbica, então meus músculos começaram a queimar o tempo todo. Além disso, tive neuropatia, as terminações neuronais também não recebiam sangue, então começaram a reclamar de uma dor terrível, a dor parecia agulhas sendo inseridas na região e eu não conseguia me livrar facilmente, mudar de posição? não, tomar ibuprofeno? não, me deram Tramadol e outros analgésicos controlados, mas nada funcionava com a dor. Não consigo lembrar de nenhuma dor maior do que essa. Já quebrei meus dedos e tive outros tipos de dores, mas essa assombra meus pesadelos. A única coisa que ajudou foi tomar antidepressivos, pois sua ação está nos neurônios que eram a causa da dor. A dor desapareceu após iniciar o tratamento com dois tratamentos diferentes. Eu estava melhorando, mas ainda fui ao hospital algumas vezes com "falsos alarmes". Eu estava com medo e qualquer nova sensação na minha perna me fazia ir para a emergência, mas não era nada. Depois de algum tempo, comecei a correr ainda mancando. No próximo ano, completa-se 20 anos do primeiro episódio, corro 98% normalmente (ainda sinto alguma queimação muscular e minha perna direita é mais fraca que a esquerda) e criei um fluxo sanguíneo alternativo, o último doppler mostrou que eu tinha vasos sanguíneos alternativos alimentando minha perna.
Despite living a normal life, well even taking anticoagulants every day and making a blood exam every month to control the dosage, it is still normal em general. That moment reminds me of how much we consider small bad events in our lives as big as they are. Health problems can cause many problems. My problem could be worse as well, imagine if I had a pulmonary embolic or a brain stroke. My problem was in the leg but it could be affecting an important vessel in the lungs or brain. My father recently had cancer surgery, for example, there are things worse than I had for sure, there will be always. But for me, it was a moment that was bigger than the other's problems at the professional level or with a girlfriend/wife. We can create a storm in a glass of water. That was the main lesson. But for sure many feelings that I felt during that period haunted me until now, sometimes that I am lazy and stop for a couple of days without doing any running exercise, I start feeling something different in my leg, and I tell my wife that I need to run and I continue running. I am not sure if it is my head or something is coming back. In addition, everything that @intishar mentioned has been very stamped in my mind since then.
Apesar de levar uma vida normal, bem, mesmo tomando anticoagulantes todos os dias e fazendo um exame de sangue todo mês para controlar a dosagem, é ainda normal em geral. Esse momento me lembra o quanto consideramos pequenos eventos ruins em nossas vidas tão grandes quanto são. Problemas de saúde podem causar muitos problemas. Meu problema poderia ser pior também, imagine se eu tivesse uma embolia pulmonar ou um derrame cerebral. Meu problema estava na perna, mas poderia estar afetando um vaso importante nos pulmões ou no cérebro. Meu pai recentemente passou por uma cirurgia de câncer, por exemplo, há coisas piores do que eu tive com certeza, sempre haverá. Mas para mim, foi um momento que foi maior do que os problemas dos outros no nível profissional ou com uma namorada/esposa. Podemos criar uma tempestade em um copo d'água. Essa foi a principal lição. Mas com certeza muitos sentimentos que senti durante esse período me assombraram até agora, às vezes que estou preguiçoso e paro por alguns dias sem fazer nenhum exercício de corrida, começo a sentir algo diferente na minha perna, e eu digo à minha esposa que preciso correr e continuo correndo. Não tenho certeza se é minha cabeça ou se algo está voltando. Além disso, tudo o que o @intishar mencionou ficou muito marcado em minha mente desde então.
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I'm glad you survived in with your leg intact. I've had clotting issues from the COVID vaccine so I have a bit of understanding and compassion for you there. Sadly we are mortal beings and our bodies wear out, just part of life.
Glad to hear you can run almost normally! I wish I could but years of athletics and Army service did my feet in. Great post, take care of yourself!
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The problem is what you feel right, I have been always into sports, so I was a pro in lesions, when I started to feel that in my leg, something that ice and creams couldn't help was very weird...
So sorry that you had these issues, I hope that you at least improved your quality of life after that even if that isn't back to normal.
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Deep Vein thrombosis!? OH you did mention vasculitis, is this still your generalized diagnosis? I wonder if has similar characteristics to my Peripheral nephropathy that manifested in my hands and feet not long after my Covid vaccines. Feels almost like a lack of circulation. I take a low dose aspirin now and then.
Vasculitis was a secondary reaction in the first hospitalization I didnt have again after… i had arterial thrombosis… in 2021 in my last visit to Brazil I went to my doctor, we discussed a bit he thinks that it was something with the anatomy of my popliteal artery and that had a small lesion that caused all the immune reactions… well staying in the warfarin just in case lol
Probably in your case it has some vascular effect … that is very common also in diabetes type 2 patients… no blood in the distal parts of the limbs the neuronal terminations suffer with that
Caramba mano, que história tensa, deve ter sido momentos bem ruins pra você, ficar tanto tempo em hospital e sentindo dores, ainda bem que você conseguiu passar por isso e saiu mais forte do que entrou!
Espero que cada dia que passe você possa melhorar mais!
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Acho que o que ficou ficou hehhehe! Mas o que sobrou é totalmente irrelevante… so a questão do remedio q é meio chato pq a dose depende de um exame de sangue ai tenho q ficar me picando kkk lançaram faz uns tempos uma nova geração de remedios que nao precisa disso mas para minha condição não é recomendado… rs fazer o que?
Entendi, tenso mano, mas a vida tem dessas coisas, alguma delas não tem como fugir e o que podemos fazer é aprender a conviver com elas. Um abraço meu amigo.
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Life is indeed unpredictable and I think I said it several times in several posts and none of us know what's waiting for us in the next moment. From an early age you are suffering and you are still bearing the pain. Losing a leg is horrific and I can guess it a little bit because one of my friends lost his leg for his sickness. Fortunately, in your case, you didn't encounter the same situation. So, keep running and don't stop. I think you know better than me but still, I am suggesting you to not feel lazy in the case of exercise because it's your treatment also.
Thank you for remembering my words and for the honorable mentions🙂.
Dont worry many people around remembering also to keep active hehhe but sometime lazyness appears 😜
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Oh my goodness 🤭🤭🤭, I felt so emotional reading your story @gwajnberg. I am so sorry for all the pain you went through with the whole procedures
I am happy you didn't lose your leg to the health challenge
But I want to ask, are you still on medication till date?
Also , so sorry about your Dad's health. I pray he gets well from the surgery 🙏
Yes, I take warfarin everyday, and need to have a blood work every month to check the dosage...if the INR gets too high it means that the medication is doing too much effect ( more risk of bleeding) so I need to reduce, if it is too low the INR is bad because it gets more risk of the clots to come back so I need to change also the dosage. But it is already in my routine I need to book a blood work by the way for the next week lol That's how it works. Yeah my dad is fine for now. The surgery recovery was bad but now he is back to his normal life , I think that he has even forgotten the problem already hehe. For him was another problem, in his case, he got diagnosed without any symptoms, which should be another challenge, right? Imagine that you have a serious disease but you aren't feeling sick. life is tough, right?
Having a serious disease without feeling sick is indeed tough. God forbid but the situation can be a silent killer.. however with close medical monitoring, we became safer...I wish you and your dad Divine healing
I know nothing about your pain but glad that you overcome it. Sending hugs and prayers♥️
Pain biology is intriguing, many different types of pains. Women have pains that I will never feel, like the pain during the regular monthly cycles and the pain of birth contractions. Women say that it is a tough pain. My wife however told me that the pain that she felt when she had a kidney infection was worse compared to these two. Every single person have different types of pains and it is difficult to share with the other how they feel that pain! hehe thanks for passing by =)
Yes.. sometimes I thought the worst pain is having a broken heart.😅
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Difficulties and bad situations come in the life of every human being. I think it is a part of life and we should face them bravely. We should encourage ourselves and not lose heart. In my opinion, time is the greatest thing that teaches a person to move with time