HERE I AM WITH MY M.E.

Let´s go.

Okay, I'm Cuca, I am part of the gatufos group, I do not think of anything to say you, sorry.

My life is very scheduled in relation to my leisure activities and necessary to scroll through the days.

My normal activity stood about fifteen years ago, I was diagnosed with a disease that has no cure, multiple sclerosis, and I thought I would not last long time in this world. This has not happened, I was stopping my activities as a"normal person" who takes care of almost everything, look after emi, my daughters, house, shopping, pick up the phone, to receive friends, to go out and search medicines, to put joy and activity in the house, another house where we lived before, in order TO LIVE ON DESPITE THIS DISEASE.

I am and always have been an active, vital person which is acustomed to never ask for anything if I can do it, and being too quiet and never stopped.

This condition hit me in my true personality because I had to stay still, sitting for hours every day, it takes me an eternity to get up and go to the bathroom, and evil is what I have to constantly ask help for this or that. Although emi tells me, in his way of saying things "I would not ask drowning help so as not to disturb", as it looks like it's worth, I think I'm asking ever for too much.

Spent a year, another, another and I had to organize my life of leisure required. Complete 24 hours a day of activity without barely move. It's hard, you have to give much mind to make a program. I did it and take it down to the letter just till now.

Yeah, I'm scheduled to go spending hours, days, months, years and live aim of making the best possible times, not embitter my life, not life miserable for those who love you, ask as little as possible, do not complain nearly for nothing , trying to fix my life needs no help, do my physical and mental exercises every day of the year without missing one.
For that I developed and memorized a program for each day of the month, every hour of the day and even every hour of the night when I'm in bed and can not sleep. Ja, ja, yes I use to tell me my stories to be alert and not thinking about my life or my health condition.

And it works, it comes complete running almost thirteen years, who would say, no one knows if I am, badly or worse, if it hurts more than the usual discomfort that continues. Stop do not think, live every second plan and not think about achieving the next hour or the next day and fewer still will, we will do next month.
The future does not exist for me. Live today, now, this moment, and so I try to be happy in spite of this disease that is slowly getting worse.

I don´t need to go out, for what?, I do not need to be out home. It can take months and months without my chair rolling on sidewalks and so emi and Isabel do not have to push it.
I'm fine at home and not craved any change in my routine, this routine keeps me safe and kept safe the people I love in Gatufolandia.
To me the most important subject it is my loved one, Emiliano and my daughters. Don´t give them any thing to be worried about, but it is difficult. Emi is always alert watching me, trying to see what I nedd and asking every moment if I am good or not.
What can I do to reléase him?. Even to reléase Isabel?.
With my daughters there is not any problema as they use not to come here and see me. I do think that they suffer a lot seeing their mother in this condition and that´s the reason the two younger not come home for months or years.
Yes, I may understan them, but emi doesn´t I know that and it gives me some hurt to see him suffering this role.

Well that´s all for the moment, it is clear to me that  activities help me NOT TO THINK, HELP ME TO LIVE EVERY DAY, HAVING MY MIND ON OTHER SUBJECT HELPE ME TO FIND PEACE.

Greetings, cuca

*****

Ya, has finally released to write a little more than I thought and that's fine.
Any other day we will know a little more of what SHE does or thinks about this gatufa, will have to catch her in a good position because I said she is really shy and does not like to share anything with people she does not know.
Congratulations cuca, you speak well and clear.

HUIR ANTE EL DOLOR

Es lo que hace la sociedad en general, huimos ante el dolor ajeno, a nadie le gusta ver a un enfermo de Ela, Esclerosis Multiple, Alzheimer, o cualquier otra enfermedad neuronal para las que ahora no existe remedio alguno.

No se curan, progresan en su deterioro, y son sumamente desagradables de presenciar en cualquier ser humano, mas incluso en las personas que nos importan, en las que alguna vez amamos, aquellas que representaron algo importante en nuestras vidas.

Amigos, familiares, esposos, hijos, padres o hermanos.

Que hacer?, que decir? cuando uno se enfrenta ante estas personas debilitadas, vulnerables, deformadas por la enfermedad que sufren en silencio o tratan de poner buena cara y disimular cuando se les pregunta, como estás?, estás mejor?, y luego silencio.

No son plato de gusto para nadie y a veces menos para sus seres mas queridos que no pueden aguantar el dolor de verlos así, en ese estado de total decrepitud o incapacidad manifiesta.

Y no son solo sus cuidadores o acompañantes los que más sufren, que lo son, son otros seres más débiles que estos llamados "cuidadores" los que ponen tierra y distancia por medio ya que no pueden soportar la vista de una persona amada sufriendo de esta manera.

Tremenda enfermedad el ELA, a la vista ha quedado para todo aquel que resista el último video de la campaña "ALS Ice Bucker Challenge" cuando el muchacho de 26 años nos muestra a su madre siendo cuidada por el mismo victima ahora de idéntica enfermedad que ella.

Y lo dice el claramente, y es que cuando menciona a sus amigos o conocidos que le han diagnosticado ELA unos no conocen la enfermedad, o no saben de que habla, los que si la conocen se quedan sin saber que decirle, como darle consuelo, cambian de conversación y al poco desaparecen de su vista y le dejan solo.

La soledad que se origina para el enfermo o sus cuidadores puede resultar tan dura como el padecimiento en si.

A veces estos enfermos se ven privados de la visita de los seres mas queridos para ellos que siempre suelen estar muy ocupados o simplemente se ausentan de sus vidas sin saber las razones que puedan alegar para ello.

Y es simple "miedo ante el dolor de un ser querido", otras veces es simple desagrado que se convierte en indiferencia

auto compasiva.

No veo, no sufro, me protejo y al final olvido a quien nunca debiera olvidar.

Humanos y débiles después de todo.

Para mi, que soy un cuidador, es necesario concienciar a esta sociedad apática que esconde el dolor y la muerte, que SI, están ahí. 

Mejor hablemos de otra cosa, suele ser el común denominador, así no sufrimos o nos asustamos de la enfermedad y dolor ajeno.

ELA, Esclerosis, Alzheimer, Parkinson, Fibromialgia, Demencia, Artritis Reumatoide, y decenas de otras enfermedades incapacitantes que proliferan en nuestro mundo occidental, rico y aparentemente solidario, cuando en realidad no lo es.

Deja al llamado tercer mundo que se pudra en sus miserias, en sus enfermedades, en sus Ebolas, e incluso a sus propios enfermos les da la espalda o genera tratamientos de costes multimillonarios que muy pocos pueden sufragar.

Malo es todo esto, muy malo, pero a veces lo peor es la indiferencia, el silencio, la incomodidad o la huida.

Huida ante el dolor, miedo, incomodidad al ver a este joven de 26 años llorando ante su enfermedad y la de su madre, huida e incomodidad ante el dolor de nuestros seres queridos, ante la muerte, el sufrimiento, el suicidio.

Si no se menciona no existe.

No resistimos verles sufrir, es tan duro, por ello mejor no los vemos y los escondemos condenándoles al silencio y a nuestra indiferencia.

Mi esposa, enferma de M.E., trata siempre de brindar buena cara y optimismo cuando los amigos vienen a verla.

Y algunos fieles amigos vienen, siguen viniendo porque no tienen miedo ni rehuyen el dolor de los seres a los que aman.

GOOD NEWS for hepatitis C

Occasionally we are pleased to read news of hope

for millions of patients with chronic diseases such as the HCV virus and for years have been treated unsuccessfully at the cost of tremendous suffering side effects.

What is not so good, at all, and prevents many patients access to treatment is "price" with new therapies are discovered to treat this condition.

Recently published article that stressed the interest of all those affected by this disease.

 

Cure hepatitis C, infectious disease that primarily affects the liver and for years has killed more Americans than HIV and AIDS, is closer than ever. Researchers at Johns Hopkins University , U.S., have led the development of a simple and effective treatment against this disease, based on a new combination of drugs.

The study, published in the latest issue of " The New England Journal of Medicine "reveals that the combination of treatments involves a pair of oral-daclatasvir sofosbuvir-and antiviral drugs, still experimental, safer against hepatitis C. 


For authors, combination therapy has worked well, even in patients who are more difficult to treat, in which the 'triple therapy' with conventional protease inhibitors of hepatitis C-combining telaprevir or boceprevir drugs plus interferon and ribavirin, were unable to cure the infection.

"This research opens the way for other safer options, tolerable and effective for people infected with hepatitis C treatment," says Mark Sulkowski, medical director of the Johns Hopkins Center for Viral Hepatitis. " Standard treatments for the disease will improve dramatically in coming years , which will lead to unprecedented advances in the treatment of patients infected with the virus, "added study leader.

The study opens the way for other treatment options safer, tolerable and effective for people infected with hepatitis C

The research was conducted on 211 men and women with any of the three main types of the disease who were treated at 18 medical centers in the U.S. and Puerto Rico.

Among patients with genotype 1, the most common strain of the infection in the U.S., 98% of 126 previously untreated patients and 98% of the 41 patients whose infections continued even after triple therapy were maintained without virus Blood detectable three months after the treatment had stopped. 

The results were similar to those infected with genotypes 2 or 3, less common strains in the country U.S. patients.

The study participants took a daily combination of 60 mg of daclatasvir (not yet approved in the U.S. or Europe) and 400 milligrams of sofosbuvir, with or without ribavirin.

Sulkowski stresses that if the declatasavir and other new drugs for hepatitis C have obtained approval from the health authorities, " the dreaded weekly injections of peginterferon be a thing of the past . "

Similarly, the expert points out that the so-called 'pill burden' standard for genotype 1 could lose about 18 pills a day and one injection per week to just one or two pills a day without injections.

Thus, the side effects of the new combination were generally mild, but include fatigue, headache and nausea, a security profile that compares favorably with the Sulkowski of pegylated interferon-based therapy, linked to serious side effects may include depression .

The side effects of the new combination were mild, but include fatigue, headache and nausea

In addition, the new study is one of the first to show that hepatitis C can be cured without the use of ribavirin, causing anemia.

Furthermore, the researcher adds that this new regime pills "should favor those infected with hepatitis C to cure, prevent the development of liver cancer and liver failure and obviate the need for a liver transplant . "

 

   

Currently, less than 5% of the approximately 3.2 million Americans with hepatitis C have been cured, according to the Centers for Disease Control and Prevention (CDC). 


Additionally, the CDC estimates that between 50 and 75% of people living with chronic hepatitis C do not know they are infected.

+ + + +

Make it early and effective is what they want millions affected, in addition to lower this much needed therapy globally.

HOW IS HER LIFE WITH M.E.

With that quiet you talk and explain that you suffer illness is Cuca, the Multiple Sclerosis think it is easy to explain or assimilate ?.

Nonsense, it is very difficult or almost impossible to explain or assimilate, every day dawns and still the same or worse, do not know how to be that day, if you can merge or not, how much help you need at all times, there are times you manage to merge for yourself, others do not and have to get up like a sack of potatoes, you think that the people or person you love must be tired of you, tired and you're a hindrance in their lives, but not you die, well some if they die soon but most, and those who tell me not have to wake up three hundred sixty-five days a year knowing that you're a useless thing, each passing week it'll be a little more each year more, and at the end you'll still be almost need of every assistance to the most vital functions.
Do you think that's easy to assimilate ?.



The truth is that thinking like you what accounts do not, can not be easy to grasp for anyone, but I see you as calm, do not lose the humor, playing with the computer, you laugh, enjoy watching a movie or chatting with friends, Sometimes it seems like nothing happened.
Besides look it much younger than you have, I thought I had very well understood or assimilated and that the disease was not so present in your head.


What is each day of the year, and I have to push myself all the time, every single day of my life today, every hour of the day when it will not show on my character, it does not take my life completely, in not monopolize the lives of those around me, or the person who cares for me, Emiliano certainly pretense, pretend, I entertain myself thinking a thousand things to review over and over again, day after day in a kind of wheel without purpose except for three day month I think about this and six in the other, and I repeat stories, countries, facts, and many things that absorb me not to think about my future, I do not have it in my illness in if I can incorporate my morning in the load I represent every day, and that effort to be busy every minute of the day, think of nothing on this that I tell you, it's what keeps me so, apparently it shows. Look good mood, happy, happy, and sometimes achievement forget and I am, I have been and am happy along many times that I'm with my friends or with people coming to see me, he loves me, friends or family and especially spending hours beside the person I love, who is already imagine.
Herein our beloved cat has been and is a major help.





And that is the reality of everyday life, for me there is nothing more, today, tomorrow when I go to bed and think of how it will be even one more day tomorrow, I do not think if I can, if I hurt more, if I can spend the half day well, none of that goes through my mind when I lie down, achievement isolate these issues within a large box and think of the Oscar, Passages of History, Capital African Nations, or I'm listing the United States of North America, placing them in the mental map that I have in all continents of the globe.

've been doing this many years since I saw that it was, that would not die soon as was my desire and especially when I decided not to rankle of those who love me, my daughters, my friends and especially my life partner Emiliano.


Amazing Cuca, and that really helps ?, that helps you get through the days without remembering disability status, the strange disease that you suffer for many, it assured me ?. Would you make sure anyone who may read these lines and this in a similar situation to yours with this disease Multiple Sclerosis or other similar ?.


A greatly helps me, it gives me breath to continue emililano beside day after day, you want me and the do every night in bed my recovery, I want to extend as much as possible the time of my absolute inability and therefore physically and mentally work day after day.
At least I think I do something useful and I can not help in other aspects of our lives'll delay as much as possible the effects of the disease, by and for me.

I absolutely want my daughters, I would spare them suffering at me like that, I get to come soon as it is hard to bear the sight of a mother in this state, a mother who should have helped these at your side to everything you wish and absolutely not in this sorry state to see or live.

Understand them and never ask them to come more often, so that, to suffer ?. No, better not, I think they have life and suffer as little as possible rather what his father does.


Cuca Bravo for you, you are a person of integrity that amazes me. Nobody, or almost nobody would think so as you think about their family or friends. The sick care, who want him, understand him, visiting him, becomes selfish, is not your case and I admire deeply for it.

I congratulate you for this, at heart, and I think you can feel proud of what you do and your attitude towards life.

Thank gatufo ?, if the name you've made you.

Thanks also to heart if you understand what I'm telling you is that you're smarter than I thought, than grace you making that face.

It's easy to understand or explain, I wish that those who want me to suffer as little as possible, if you want me , come and be with me the potential to make your stay enjoyable, not painful, and if you do not want to see me because they find it very hard, I understand perfectly because I love them too much to be selfish.


Until another day Cuca.

QUE PUEDO DECIR

Vale, soy Cuca, formo parte de este grupo de los gatufos y no se me ocurre nada que contar. 
Me piden que cuente algo sobre mi, sobre mi actual vida y solo puedo contaros que mi vida está muy programada en relación con mis actividades lúdicas y necesarias para ir pasando los días.
Mi actividad normal quedó parada hace unos quince años, me diagnosticaron una enfermedad que no tiene cura, esclerosis múltiple, y de momento pensé que duraría poco en este mundo.
No ha sido así, fui cesando mis actividades de "persona normal" que se ocupa de casi todo, de emi, de mis hijas, de la casa, de las compras, de coger el teléfono, de recibir a los amigos, de salir a buscar las medicinas de emi, de poner alegría y actividad en la casa, otra casa en la que vivíamos antes, en fin DE VIVIR ACTIVA.

Soy y he sido siempre una persona activa, vital, que no suele nunca pedir nada si yo puedo hacerlo, y siendo así nunca paraba demasiado quieta.

La dolencia me golpeo en mi auténtica personalidad pues he tenido que permanecer quieta, sentada, horas y horas todos los día, tardo una eternidad en levantarme e ir al baño, y lo que llevo mal es pedir constantemente ayuda para esto o lo otro. Aunque emi me  dice, en su manera de decir las cosas "que me estaría ahogando y no pediría socorro con tal de no molestar", pues vale el lo ve así, yo creo que pido demasiadas cosas.


Pasó un año, otro, otro más y tuve que organizar mi vida de ocio obligado. Llenar 24 horas al día de actividad sin moverme a penas. Es difícil, tienes que darle mucho a la mente para hacer un programa. Lo hice y suelo llevarlo a rajatabla.

Si, estoy programada para que vayan pasando las horas, los días, los meses, los años y seguir viviendo procurando sacar los mejores ratos posibles, no amargar mi vida, no amargar la vida de los que amo, pedir lo menos posible, no quejarme, tratar de arreglar mis necesidades vitales sin ayuda, hacer mis ejercicios físicos y mentales todos los días del años sin faltar uno. Para eso desarrollé y memoricé un programa para cada día del mes, cada hora del día e incluso cada hora de la noche cuando estoy en la cama y no duermo.




Y funciona, viene funcionando casi trece años completos, quien lo diría, nadie se entera si estoy regular, mal o peor, si me duele mas de los habitual la molestia que no cesa. Pare ello no pienso, vivo el plan cada segundo y logro no pensar en la hora siguiente, ni el día siguiente y menos todavía que haré, que haremos el mes que viene.

El futuro no existe para mi. Vivo hoy, ahora, este momento y así trato de ser feliz a pesar de esta enfermedad que va lentamente a peor.

A penas salgo a la calle, para que?, no lo necesito. Pueden pasar meses y meses sin que mi silla ruede por las aceras y así emi o Isabel no tienen que empujar. Estoy bien en casa y no ansió ningún cambio en mi rutina, esa rutina me mantiene a salvo y mantiene a salvo la gente que quiero en Gatufolandia.

Ya he escrito o hablado demasiado, otro día si me invitan escribiré un poco más sobre mis actividades lúdicas que me ayudan a NO PENSAR, a vivir, a encontrar sosiego.

Saludos, cuca

*****

Ya, por fin se ha soltado a escribir un poco, mas de lo que pensaba y eso está bien.
Cualquier otro día conoceremos un poco más de lo que hace o piensa esta gatufa, habrá que pillarle en buena disposición pues ya he dicho que es realmente tímida y no le gusta compartir nada con gente que ella no conoce.

Por hoy lo dejamos aquí, ya seguiremos....

O mejor que escriba emi que es la persona que me cuida.
Con afecto.



cuca