My mother was a renal patient, she lived for more than 18 years on dialysis therapy, for 17 years she was on peritoneal dialysis, very few complications, we were looking for a transplant through a compatible cadaver, for two long years we were (I am involved) in treatment so as not to reject the transplant while we waited for the long awaited day. Just when it was about to be his turn, my country entered a serious crisis not only in the hospital but in every aspect and everything fell apart.
I got involved in the whole thing, because I took care of my mother for all this time except for three months before she passed away, because with time my renal condition also worsened, since I spent long periods in the hospital, traveling constantly and miraculously looking for donations of dialysis material since the government had stopped supplying it and that cannot be bought, it is only available through social security.
It became a struggle, I gathered a large group of renal patients nationwide and began to defend their rights with other people, we created a foundation called "Fundasolurenal" today inoperative, since the function of this was to help us all together to obtain dialysis material and defend our rights, so much so that after so many marches and meetings we were heard, it became a war between the struggle for life and politics.
This is just to tell you part of a viacrucis and you can understand me.
Mi mamá era paciente renal, vivió por más de 18 años en terapia de diálisis, por 17 años estuvo en diálisis peritoneal, muy pocas complicaciones, estuvimos buscando trasplante por medio de un cadaver compatible, por dos años largos estuvimos (me involucro) en tratamiento para no rechazar el trasplante mientras esperábamos el ansiado día. Justo cuando estaba apunto de llegar su turno, mi país entró en una grave crisis no solo hospitalaria sino en todo aspecto y todo se vino abajo.
Me involucro en todo el asunto, porque cuidé de mi madre por todo este tiempo a excepción de tres meses antes de ella fallecer, pues con el tiempo mi condición renal también fue empeorando, dado a que pasaba largos periodos en el hospital, viajando constantemente y buscando milagrosamente donaciones de material de diálisis ya que el gobierno había dejado de suministrarlo y eso no se puede comprar, solo está disponible a través del seguro social.
Se convirtió en una lucha, junté un gran grupo de pacientes renales a nivel nacional y comencé a defender sus derechos con otras personas, creamos una fundación llamada "Fundasolurenal" hoy inoperativa, ya que la función de esta era ayudarnos entre todos a la obtención de material de diálisis y defender nuestros derechos, tanto que luego de tantas marchas y reuniones fuimos escuchados, se convirtió en una guerra entre la lucha por la vida y la política.
Esto es solo para contar parte de un viacrucis y puedas comprenderme.
In the hospital they always gave us talks, because there were relatives of renal patients who were not very involved with the disease and the renal patient, from my love as a daughter and knowing that I am also a grade 2 renal patient, my mommy and I were one, strong and firm, we supported each other.
That guaranteed my mother's success and survival in the face of so many vicissitudes, I was so close to her that if she did not eat, I did not eat, if she felt bad I would not leave her side, but I never, never treated her as someone who was invalid and useless or someone who was going to die or whose days were numbered.
The success of overcoming an illness is the will to live and the family support, the attitude you take towards the illness, meeting and being close to people who encourage you, I took care of my mother from everything, even from unhealthy comments, those passive-aggressive ones that bring you down, that depress you.
When my mother woke up feeling bad and swollen, she would tell me: "Daughter, I am swollen, I feel bad. I would answer her: - Mommy, you are beautiful, let's do something today and I would take her out for a walk, it improved her quality of life, we all wish our mothers were immortal. I always encouraged her in every aspect and she became super active and pro active, with a strength superior to mine, that many times she was the one who helped me.
Whenever we went to the hospital she was the example, a woman who took care of her nutrition, and therefore I gave a lot of small workshops for the relatives as well as for the patients themselves. This gave me a certain privileged position in the hospital because I helped and collaborated a lot with the doctors. They made us feel very loved and supported.
Support and love is fundamental.
En el hospital siempre nos daban charlas, pues había parientes de pacientes renales que no se involucraban mucho con la enfermedad y el paciente renal, desde mi amor de hija y sabiendo que también soy paciente renal grado 2, mi mami o yo éramos una, fuertes y firmes, nos apoyábamos.
Eso garantizó el éxito y sobrevivencia de mi madre ante tantas vicisitudes, me uní tanto con ella que, si ella no comía, yo no comía, si ella se sentía mal no me despegaba de su lado, pero jamás, jamás la traté como alguien inválida e inútil o alguien que se fuera a morir o tuviera sus días contados.
El éxito de superarse ante una enfermedad es las ganas de vivir y el apoyo familiar, la actitud que tomas frente a la enfermedad, reunirse y estar cerca de personas que te alientan, yo cuidaba a mi madre de todo, hasta de comentarios mal sanos, ese pasivo – agresivos que te hunden, que te deprimen.
Cuando mi mamá amanecía sintiéndose mal e hinchada me decía: - Hija estoy hinchada, me siento mal. Le respondía: - Mami, estás es bella, vamos a hacer algo hoy y la sacaba a pasear, mejoraba su calidad de vida, todos deseamos que nuestras madres fueran inmortales. Siempre la animé en todo aspecto y ella se volvía en alguien super activa y pro activa, con una fuerza superior a la mía, que muchas veces ella era quien me ayudaba.
Siempre que íbamos al hospital ella era el ejemplo, una mujer que cuidaba de su alimentación, y por ende yo daba muchos consejos pequeños talleres tanto para los familiares como para los mismos pacientes. Esto me hizo tener cierta posición privilegiada en el hospital pues ayudaba y colaboraba mucho con los doctores. Nos hacían sentir muy queridos y apoyados.
El apoyo y el amor es fundamental.
My renal condition worsened and if I go to stage III I will fall into dialysis and I will not resist it, I am not compatible, so I must take care of myself a lot.
A balanced diet, I can eat everything except fish, since my phosphorus increases, I should not eat certain grains, take vitamins, iron and folic acid, since I lose blood through the urine from time to time, I am a mono reno patient (only one kidney).
I was sent away from the hospital, in a meeting with the doctors, I thought they were going to talk to me about my mother, they were talking about me because I was getting physically worse, it was very noticeable, they asked another family member to take care of my mother while I recovered a little, because it could be worse. I knew that my siblings, who were never involved, could be fatal, but I had to rest a little. However, from afar I was watching and moving everything, I gave every possible medical explanation so that they would treat her well. I could no longer travel, other things made it impossible for me. Mom died almost three months later and my life fell apart.
Despite so many years of thinking to myself that she could pass away at any moment, you are never really prepared for it, so I have a hard time getting over it. I have a strong need to tell you about my experience because you don't know how important family support and love really is to get through it all.
Mommy got depressed because I was not there, she saw me as a heroine, as the wonder woman, a super woman who always saved her from everything, while for me she was my light, my joy, my desire to eat the world. My brothers did not have the same tact with her, however, on the phone at every moment I always told her how valuable she was and to hold on long enough until we could be together again. I would always tell her: - Hang in there my warrior, you can do it. She was the best.
The doctors told me that my absence was noticeable even in the hospital, my mother's mental and emotional condition was declining along with her health, days before she passed away I called her like so many times but at that moment she told me that she wanted to rest, that she no longer thought she could stand so long without me, my heart was squeezed, I wanted to give her a lot of strength and my arms open to hug her and encourage her, but the distance prevented me, days later she died inexplicably. The doctors told me that she thought that we might not see each other again and she lay down to die.
Mi condición renal agravó y si paso a estadio III caeré en diálisis y no lo resistiré, no soy compatible, por lo cual debo cuidarme muchísimo.
Una alimentación balanceada, puedo comer de todo menos pescado, ya que se me sube el fosforo, tampoco debo comer ciertos granos, tomar vitaminas, hierro y acido fólico, ya que pierdo sangre por la orina de vez en cuando, soy un paciente mono reno (un solo riñón).
Me corrieron del hospital, en una reunión con los médicos, yo pensaba que me iban a hablar de mi mamá, estaban hablando de mí pues desmejoraba físicamente, era muy notable, solicitaron que otro familiar cuidara de mi madre mientras yo me recuperaba un poco, ya que podía ser peor. Yo sabía que mis hermanos que nunca se involucraron, podría ser fatal, pero tenía que descansar un poco. Sin embargo desde lejos estaba pendiente y moviendo todo, di toda explicación medica posible para que ellos la trataran bien. Yo ya no podía viajar, otras cosas me imposibilitaban. Mamá murió casi a los tres meses después y mi vida se vino abajo.
A pesar de tantos años mentalizándome con que ella podría fallecer en cualquier momento, jamás lo estás preparado realmente, por lo que me cuesta superar. Tengo la necesidad imperiosa de contar mi experiencia pues no saben lo importante que es realmente el apoyo familiar y el amor para superar todo.
Mami se deprimió porque no estaba yo, ella me veía como una heroína, como la mujer maravilla, una super mujer que siempre la salvaba de todo, mientras que ella para mí era mi luz, mi alegría, mis ganas de comerme el mundo. Mis hermanos no tenían el mismo tacto con ella, sin embargo, por teléfono a cada instante siempre le decía lo valiosa que era y que soportara el tiempo suficiente hasta podríamos estar juntas de nuevo. Siempre le decía: - Aguanta mi guerrera, tú puedes. Ella era lo máximo.
Los médicos me dijeron que mi ausencia era notoria hasta en el hospital, la condición anímica y mental de mi mamá estaba decayendo junto a eso su salud, días antes de ella fallecer la llamé como tantas veces pero en ese momento me dijo, que quería descansar, que ya no pensaba que aguantaría tanto tiempo sin mí, mi corazón se estrujó, quise darle muchas fuerzas y mis brazos abiertos para abrazarla y darle ánimo, peor la distancia me lo impidió, días después ella falleció inexplicablemente. Los médicos me dijeron que ella pensó que tal vez no nos volveríamos a ver y se echó a morir.
The importance of family support and attitude is everything, in short.
Looking for how to calm my pain a little, I opened my heart to love, after so many years, more than ten long years, while I kept my positive attitude that everything bad is transitory and that soon good days will come, aware that no one is perfect, that you have to know yourself well before making final decisions, everything was fine, but it turns out that this person, who I was looking for and believed would give me the will to live was being the opposite.
For a person in a terminal state it is important to remind them and encourage them to want to live, never tell them that they are ugly or remind them that they will die. That was done to me many times a day. I let it go because it is my reality and I accepted it. But there are times when you feel knocked down and these attitudes are fatal.
My mom made great efforts to look good, in the hospital we were mentored:
Being a renal patient is not being sick, it is a condition of life.
It is to be aware of your body and your illness that you must love yourself even more. According to the doctors, they gave me three months to live, that was two years ago, I am still here fighting, my condition is stable. But I was so depressed that I would make every effort to look good and pretty and the other person seeing my pictures would say a passive-aggressive comment.
The healthiest thing I could do was the following, even though I loved that person with all my soul, I must love me first, so I ended that relationship, because he always abandoned me in the worst moments.
- Place on a scale all the positives on one side and the negatives on the other side and see which weighs more, then reason.
- Communication: I tried, but the person was falling into the same thing again and educating someone neophyte on this subject, at my height and my ailment is a drain on energy that I can't afford to have.
- How much can the other person love us through their actions and words?
La importancia del apoyo familiar y la actitud lo es todo, en definitiva.
Buscando cómo calmar un poco mi dolor, abrí mi corazón al amor, después de tantos años, mas de diez largos años, mientras yo mantuve mi actitud positiva que todo lo malo es transitorio y que pronto llegarán días buenos, consciente que nadie es perfecto, que hay que conocerse bien antes de tomar decisiones definitivas, todo estaba bien, pero resulta que esta persona, que buscaba y creía me daría ganas de vivir estaba siendo lo contrario.
Para una persona en estado terminal es importante le recuerdes y animes las ganas de vivir, nunca le digas que está fea ni le recuerdes que morirá. Eso lo hacían conmigo muchas veces al día. Lo dejaba pasar porque es mi realidad y acepté. Pero hay momentos en los que te sientes derribado y estas actitudes son fatales.
Mi mamá hacía esfuerzos grandes por verse bien, en hospital nos mentalizaron:
Ser paciente renal no es estar enfermo, es una condición de vida.
Es ser consciente de tu cuerpo de tu enfermedad que debes amarte aún más. Según los médicos, me dieron tres meses de vida, eso fue hace dos años, aun sigo aquí luchando, mi condición es estable. Pero me decaía demasiado, que hacía todo el esfuerzo para verme bien y bonita y la otra persona al ver mis fotografías dijera un comentario pasivo – agresivo.
Lo más saludable que pude hacer fue lo siguiente, a pesar que amaba a esa persona con toda mi alma, debo amarme a mí primero, así que acabé con esa relación, pues siempre me abandonaba en los peores momentos.
- Colocar en una balanza todos los aspectos positivos de un lado y los negativos del otro lado y ver que pesa más, luego razonar.
- Comunicación: Lo intenté, pero la persona caía en lo mismo nuevamente y educar a alguien neófito sobre este tema, a mi altura y mi padecimiento es un desgaste de energía que no puedo darme el lujo de tener.
- ¿Qué tanto nos puede amar la otra persona a través de sus acciones y palabras?
My attitude with my mother and the common of committed and loving family members with those suffering from CKD on dialysis was the same. Love, understanding and lots of encouragement, a positive and dedicated attitude.
When my mother did not want to get out of bed: First I would examine her, notice that she was a little depressed, and tell her: - Come on (I always gave her thousands of loving nicknames) Florecita, Gladiola, Cotufita, Viejita, Levántate de la cama!
I was always looking for excuses, anything to distract her and get her out of her state: sometimes I would pretend to be sick, sometimes I would tell her, I'm hungry, I want coffee, mommy, it hurts here. It works, it really works. Mommy's mood changed radically and she was fine all day long.
With respect to the relationship I had, I took advantage of her abandonment once again and took it out of my heart, because it caused me a lot of pain.
To treat a renal patient it is necessary:
- Keep a strict control of the disease, listen to the doctors, attend workshops and be aware of the rotation of dialysis, if these are peritoneal, watch the inventory, expiration date, hygiene.
- Adequate food, rich in vitamins, vegetables, certain fruits, whatever our nutritionist tells us to eat.
- Family support, it is indispensable, unquestionable, love is the force that motivates us, strengthens us and keeps us encouraged.
- To value all the effort they make in every way.
- The attitude we take towards any disease is very important, to be aware of what we suffer or what our family member suffers and improve the quality of life in every aspect.
- Maintain a positive environment and surround yourself with people with good vibes.
- Never lose faith. So sticking to the spiritual side, to God above all is fundamental.
Always strengthening our mental health is also key, mommy and I played a lot, whether it was cards, Nintendo, board games, any activity that with sharing gave us laughter.
An illness is already treating the person suffering from it badly enough, do not try to make things worse than they already are. Try to always leave everything in better conditions than you found it, you will be more successful in everything and you will help others to achieve success as well.
These are my personal experiences. Many of my photographs may be scattered in many social networks including newspapers, but they belong to me.
I tell my experience because I want to help improve not only your quality of life but that of a family member who is sick, never, ever treat someone as if they were going to die.
It has been hard to forgive myself, a daily and hard work, more to fight and bear the emptiness of the absence of her, who was my best friend and unconditional companion. But I always try from all my physical conditions and health that limit me, to give the best of me if I can more than there I will give it, because I intend to leave my mark in a good way through my experiences. Practicing meditation, maintaining environments, staying away from things and people that bring me down, staying positive in the face of circumstances.
"I don't need someone to remind me that I will die, I need someone to give me enough reasons to live".
Mi actitud con mi madre y el común de familiares comprometidos y amorosos con quienes padecen de Insuficiencia Renal Crónica en etapa de diálisis, era la misma. Amor, comprensión y mucho ánimo, una actitud positiva y dedicada.
Cuando mi mamá no quería levantarse de la cama: Primero la examinaba, notaba que estaba algo deprimida, y le decía: - Vamos (siempre le ponía miles de apodos amorosos) Florecita, Gladiola, Cotufita, Viejita, ¡Levántate de la cama!
Buscaba excusas siempre, lo que sea para distraerla y sacarla de su estado: a veces me hacía la enferma, a veces le decía, tengo hambre, quiero café, mamá me duele aquí. Funciona, realmente funciona. Mamí cambiaba el ánimo radicalmente y pasaba bien todo el día.
Con respecto a la relación que tenía pues, aproveché su abandono una vez más y lo saqué de mi corazón, pues me causaba mucho dolor.
Para tratar a un paciente renal es necesario:
- Llevar un control estricto de la enfermedad, escuchar a los médicos, acudir a los talleres y estar pendiente de la rotación de las diálisis, si estas son peritoneales, vigilar el inventario, fecha de caducidad, higiene.
- La alimentación adecuada rica en vitaminas, vegetales, hortalizas, ciertas frutas, aquello que nuestro nutricionista nos indique comer.
- Apoyo familiar, es indispensable, indiscutible, el amor es la fuerza que nos motiva, fortalece y nos mantiene animados.
- Valorar todo el esfuerzo que ellos hacen en todos los sentidos.
- La actitud que tomemos frente a cualquier enfermedad es muy importante, ser consciente de lo que padecemos o lo que padece nuestro familiar y mejorar la calidad de vida en todo aspecto.
- Mantener un ambiente positivo y rodearse de personas con buenas vibras.
- Jamás perder la fe. Por lo que apegarse al lado espiritual, a Dios por sobre todo es fundamental.
Fortalecer siempre nuestra salud mental también es la clave, mami y yo jugábamos mucho, ya sea cartas, Nintendo, juegos de mesa, cualquier actividad que con el compartir nos diera risas.
Una enfermedad ya está tratando lo suficiente mal a la persona que lo padece, no prendas empeorar las cosas más de lo que están. Procura dejar todo siempre en mejores condiciones de lo que lo encontraste, tendrás más éxito en todo y ayudarás a los demás a alcanzar el éxito también.
Estas son mis vivencias personales. Muchas de mis fotografías puede que estén esparcidas en muchas redes sociales inclusive periódicos, pero me pertenecen.
Cuento mi experiencia porque quiero ayudar a mejorar no solo tu calidad de vida sino la de algún familiar que esté enfermo, jamás, jamás trates a alguien como si se fuera a morir.
Ha sido duro perdonarme, un trabajo diario y rudo, más luchar y soportar el vació la ausencia de ella, que era mi mejor amiga y compañera incondicional. Pero siempre trato desde todas mis condiciones físicas y salud que me limitan, dar lo mejor de mí si puedo más de allá lo daré, pues pretendo dejar mi huella de buena forma a través de mis experiencias. Practicando meditación, manteniendo ambientes, alejándome de cosas y personas que me hunden, manteniéndome positiva ante las circunstancias.
“Yo no necesito a alguien que me recuerde que moriré, necesito a alguien que me de razones suficientes para vivir”.
Graphics tablet: Huion (Usb Pen Tablet). Model 420.
Mi canal Youtube, tiene un montón de tutoriales muy útiles para ti.
My Youtube channel, has a lot of very useful tutorials for you.
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Congratulations, your post has been upvoted by @dsc-r2cornell, which is the curating account for @R2cornell's Discord Community.
Enhorabuena, su "post" ha sido "up-voted" por @dsc-r2cornell, que es la "cuenta curating" de la Comunidad de la Discordia de @R2cornell.
Reading this makes me understand the impact illnesses can have on our daily lives including our mental health. In a way I empathize with you because I know we both struggle daily with this health issue and in a way it wears us down in every way. However, we are here, and with that we can say that we have learned to live with these health experiences and consequences. You are an example to know that it is possible to move forward.
Greetings my friend.
I think it is the biggest demon against which I fight daily, because it is our reality.
I used to take care of my mom from everything, even from bad thoughts, because I know that these struggles leave us mentally weak and susceptible to everything. Thank God my mother's character was sweet and bearable, I was always alert to any family member or friend who said something that would make her depressed, there are people who do not think what they say, they do not know the magnitude of the damage they can cause and others who know and do it out of malice.
My mom's eyes were so expressive that looking at them sadly broke my heart into little pieces. I love her with all my heart I think it shows.
My refuge in Hive has helped me a lot in every aspect, that's why it becomes something sacred to me, you and I share a lot, we have many things in common and so much more.
That's why it's good to surround yourself with so many good vibes, the difference of this great social network is that here we are respectful, and we are more the good ones than the bad ones, we end up being a big family that I never imagined in my life. Many blessings to you and I hope you can find the balance of health.
Above all we must stay positive mentally, everything is fleeting, living one day at a time has helped me a lot, take things more calmly. Stop rushing and try to live better.
When we feel bad there is always a being of light out there that will lift our spirits, you know a lot about that, you have been part of it.
Beautiful people who remind us of the joy of living.
In a way reading you has made me a little sad, I could perceive your sorrow and sadness, the truth is I have no words for someone who has lost a loved one and even more when it is a mother. I can only tell you that you are a brave warrior who has given everything, you can be sure that your mom understands you and loves you from wherever she is.
Keep on with that essence that characterizes you and never give up, go ahead without looking back, without letting anyone tell you that you are not capable of something because of that disease you have and that in a way limits you.... I just tell you to keep on being you, what you do and what you have done, is something that God will always give you his reward.
I hope you keep going and keep shining as strong as the sun, remember that for many you are very important.... Never forget that!
From the bottom of my heart I wish you all the best, you are a great person and I appreciate that very much..... I have the joy of having my parents with me and day after day I fight and I am here with them, today they are the most important thing I have, I have read you and thanks to that I have to remember that for them I have to keep fighting no matter the adversities.
I send you a big hug from a distance! Success and blessings to you :)
Thank you for sharing this difficult story! I cannot imagine going through this illness myself let alone watching my momma go through it! What a journey you've been on, and one you'll be on forever it sounds like. I really appreciate you being so open and vulnerable!! May things improve for you and your family!
Thank you for your nice visit.
It makes us strong, I feel strengthened to tell my experience, of course it is only a tiny, very tiny part, and if through it I can give light of hope to another person who feels bad, or raise awareness to someone, it makes me happy. Blessings.