Me puse en mi armario esta mañana, mirando a su alrededor como si yo nunca había estado allí. No podía recordar lo que estaba haciendo, por qué, o qué debería hacer a continuación. Así que me quedé quieto, esperando a que venga a mí. Momentos antes había sido violentamente jadeando como un animal salvaje, doblada por el dolor y abrazando a mi propio cuerpo. Simplemente había subido a vestirme para el día, pero tal como lo hace todos los días de mi vida, en mayor o menor grado, mi enfermedad me recordó que estaba a cargo.
Se llenaron de lágrimas. Eso pasa mucho, demasiado. No siempre tengo palabras más cuando quiero expresar lo que siento por lo que mi alma se expresa por mí. Yo olvido. Mucho.
No es la fibromialgia
Me diagnosticaron fibromialgia en mis 30 años de edad por un médico joven que tenía claramente acaba de aprender la palabra en una fiesta de pijamas en junior médico del campo.
“Va a crecer más y más débil hasta que finalmente los músculos se atrofian. Su vida útil se acorta drásticamente, y usted vive sus últimos años en silla de ruedas “.
Con los años me gustaría experimentar períodos esporádicos de mejora y por lo que había decidido que la fibromialgia fue un diagnóstico de mierda, y yo absolutamente seguro de que no lo tenía.
Entonces me pongo muy enfermo otra vez.
Mis síntomas
Mis brazos y piernas se adormecen, casi siempre ambas cosas al mismo tiempo, pero a veces no. De cualquier manera, yo caer, tropezar con las cosas, perder el equilibrio. No siempre puedo decir donde mi pie está golpeando, y cuando eso sucede se podría pensar que nuestros pisos son de masticado chicle.
Mis articulaciones se endurecen tan severamente que mis tobillos no quieren doblar los codos y siempre se siente como si alguien los golpeó con un martillo mientras dormía.
Me muevo como Frankenstein, sólo que no tan agraciado.
Mis duelen los músculos hasta el hueso de una manera que se siente como siempre estoy luchando contra la influenza. Nunca se detiene. Nunca.
Pero, con mucho, el peor que he estado viviendo durante tanto tiempo es la fatiga extrema. He pensado a menudo de lo que la palabra que posiblemente podría usar para describir lo que se siente, y siempre he venido con las manos vacías. Todo lo que puedo decir es el tipo de fatiga vivo con todos los días es lo que yo creo que se debe sentir a morir. Cuando es muy malo, los médicos notar una parálisis que se apodera de mi cara, y tengo problemas incluso de pie. No puedo descansar lo suficiente para recuperarse. Yo digo que es como si alguien me está embalsamamiento.
Eso puede suceder si estoy sentado en una silla con los pies en alto, o puede ocurrir después de que he jugado con mis grandmonkeys. No importa lo que hago. Siempre está ahí.
He dicho a todos los médicos que he visto, “Yo sé que no voy a vivir mucho más tiempo. Me muero.”Yo he sabido que desde hace mucho tiempo. En los últimos años tendría ráfagas de semanas o meses de la energía que permitirían que me comporte con normalidad. Sin embargo, siempre supe que me estaba muriendo. En los últimos tres años he realmente sentí que mi vida escapando. Ha habido casi ningún ráfagas de energía o días buenos – sólo yo esperando para ir a dormir y no despertar.
Supuse que en mis resultados de la autopsia que habían descubre lo que estaba realmente mal conmigo y “el mundo” sabrían que no estaba loca. Bueno, al menos en lo que respecta a mi salud.
A través de décadas he sido visto por los nuevos médicos, y con cada vine montones de nuevas cuentas médicas. “Usted está presentando como que tiene esclerosis múltiple”, todos habían dicen, y después de la misma batería de pruebas llegaron el mismo diagnóstico.
Fibromialgia y síndrome de fatiga crónica.
“No creo que ninguno de ellos es un diagnóstico,” yo diría que a ellos. “Usted me está etiquetando con esas palabras porque soy una mujer, y porque usted no sabe qué hacer conmigo.”
Querer molestar a un médico? Dígales que usted piensa que ellos no saben lo que están hablando. Uno particularmente arrogante hijo de puta me dijo: “Usted parece como si prefieres habría dicho que usted tiene esclerosis múltiple”.
Conozco a personas que sufren indeciblemente con esclerosis múltiple. Es vicioso. Pero si. A veces me he tomado el diagnóstico de esta enfermedad horrible aunque sólo sea para tener una “cosa real” que explica por qué tan a menudo no puedo andar las diez pies de mi sillón reclinable al baño más cercano sin agarrarse de algo. Las personas que creen que cuando usted dice que tiene EM. Ellos entienden (lo mejor que pueden), que no está bien y que no eres un mentiroso que busca atención.
No es la misma forma de pensar con respecto a Fibro y el SFC.
Recuerdo que alguien Respeto mucho que de repente se hizo un anuncio en Facebook acerca de las mujeres y la fibromialgia. Ir en una dieta, hacer ejercicio y crecer resume bastante bien el sentimiento. No había manera de que pudiera decirle a la gente lo enferma que he estado por miedo a que piensen en mí como alguien que no estaba esforzando lo suficiente para estar sano, o peor, que ellos piensan que todo estaba en mi cabeza.
Sólo para estar seguro, fui a ver a un psiquiatra. “Sher, no están locos. Esto no está en su cabeza “, dijo. A su favor también dijo: “Podría prescribir Lyrica para ti, pero si hago lo que es lo mismo que decir que creer lo que le han dicho acerca de lo que está pasando y yo no. Usted tiene que seguir presionando hasta que llegue a la persona que le pueda ayudar “.
Bien intencionados amigos cercanos y no tan bien intencionados familiares tuvieron más que decir cuando me gustaría tenerlos en mi confianza acerca de cómo mal que estaba. Para ser justos, sólo hay una persona que sabe lo malo que soy. Algunas personas en mi vida saben un poco, y un poco más, pero nadie sabe la medida de cuán terriblemente malo que ha sido más allá de mi pareja.
Lo que la gente me dice
Es necesario cortar el gluten. Es necesario cortar el azúcar. Es necesario para empujar a través de él. Es necesario hacer ejercicio. Usted debe orar. Es necesario esforzarse más que forzarse a hacer cosas que son incómodas. Mi amigo conoce a alguien que conoce a alguien que tiene fibromialgia y que están viviendo su vida, no por ahí dejar que suceda.
Y las peores cosas que se han dicho? Las cosas que no puedo sacar de mi cabeza y que me traen hasta las lágrimas mientras escribo?
“¿Está pensando en estar enfermo próximo mes?”
“¿Seriamente? No me diga que usted está enfermo de nuevo. De Verdad? Es curioso cómo estás enfermo cuando necesito algo de ti “.
Por último, un diagnóstico
Un conocido me dejó una nota un día que me animó a ver a un médico de enfermedades infecciosas aquí en el Medio Oeste. Un pariente cercano de ella se hizo más saludable por este hombre y sintió que debería al menos verlo. Tomó meses para entrar, y yo era profundamente escéptico.
El día llegó y me llevó a mi pareja conmigo para ayudarme a expresar lo que estaba ocurriendo, formular preguntas inteligentes, y recordar todo. Cuando se pierde sus palabras y se olvida de las cosas de la manera que lo hago, dejas de asistir a las citas a solas. Dejas de asistir sola a ninguna parte.
Cuando él entró, supe de inmediato que algo había cambiado. Me dijo que estaba permitiendo que dos horas para nuestra visita. Nunca había tenido más minutos con cualquier médico. Me hizo preguntas sobre mi vida actual, y mi pasado. En muchos casos, antes de que pudiera responder, me diría lo que sospechaba mi respuesta iba a ser. Él siempre tenía razón.
Explicó su investigación sobre la fibromialgia y síndrome de fatiga crónica y la forma en que se había convertido en su pasión de conducir desde hace muchos, muchos años. Nos habló sobre su investigación , los dos papeles que había publicado y la tercera en la que estaba trabajando.
“Estoy 95% seguro, Sher, que cuando un examen de orina que será positivo para las micotoxinas – moho negro.”
En mi vida, ningún médico ha hecho una declaración tan atrevida. Ningún médico de cualquier tipo nunca antes había sido tan seguros de utilizar este tipo de lenguaje antes de las pruebas.
“Es con buena razón por la que me dice que sabe que se está muriendo. Eso es exactamente lo que está sucediendo. Las micotoxinas que están matando a nivel celular “.
Y, a continuación, dijo dos pequeñas frases que cambiaron todo.
“Puedo ayudarte. Te ayudaré.”
Lloré, y cuando al final de nuestro tiempo juntos, él se levantó para irse él abrió los brazos a mí. “Por aquí, nos damos abrazos.”
Llegué a casa y recé para que yo sería positivo para el moho negro. Hay una oración nunca imaginé.
Cuando volvieron las pruebas, unas dos semanas, he recibido una copia de mis resultados. No era en blanco y negro. Moho negro. Las micotoxinas. “Usted tiene una fábrica de moho negro que vive en su cavidad sinusal, Sher,” dijo el médico.
Podría haber empezado como una chica muy joven en el Sur. Podría haber ocurrido todos los años que viví en Kentucky. Podría haber sido en Alemania. Definitivamente se podría haber empeorado de nuevo por toda la inundación y casas antiguas en el sureste de Kansas.
“Usted no tiene que vivir en una casa con moho negro en las paredes para que esto ocurra a usted,” dijo.
Ese ha sido varias semanas atrás ahora, y cada día que dura el tratamiento que ha prescrito. Equivale a la inhalación de un medicamento para matar el moho. No hay manera de saber cuánto tiempo va a tomar, pero no me importa. Si se tarda un año lo haré todos los días y esperar a que esto termine. Los únicos efectos secundarios actualmente estoy teniendo es que estoy tan náuseas casi todo el tiempo, y la fatiga ha conseguido incluso peor … si se puede imaginar tal cosa.
Estoy esperando una llamada de su enfermera en este momento sobre esas cosas, pero yo mismo he dicho a la náusea es a partir del tratamiento corriendo por mi garganta hasta el estómago. Y el cansancio empeoramiento? Bueno, solía decir a mis hijos que cuando su cuerpo está trabajando duro para hacer que así, usted tiene que descansar porque se necesita mucha energía para la curación. Hay una guerra dentro de mi cuerpo y ahora sólo voy a tener que hacer lo mejor que pueda para esperar a cabo.
Al menos sabemos que diablos este monstruo invisible, es tortuoso y no hay esperanza ahora. Quiero estar sano de nuevo. Quiero llevar a mis grandmonkeys en las salidas. Quiero correr. Quiero beber café en Portland, y dormir en una casa del árbol en Nueva Inglaterra, y beber buen vino con amigos en Chicago, y comer la mejor pizza en Nueva York, y el descenso por cable en un lugar exuberante y cálida. Quiero ser yo otra vez.
Tengo dos hijos muy cariñosos y de apoyo y un hombre en mi esquina que dice cosas como: “Yo prefiero que la vida con usted – incluso cuando no estás bien – que la vida sin ti. No hay duda.”
No se puede dejar de fumar ahora. Estoy tres pies de sol.
Si usted se pregunta sobre el envenenamiento por moho negro, te dejo con la siguiente información:
Los síntomas de moho negro
Tenga en cuenta que se trata de una lista exhaustiva. Usted no tiene que tener todos los síntomas de tener una enfermedad relacionada con el molde.
- Dolor abdominal
- Molestias y dolores
- La agresión y otros cambios en la personalidad
- Ansiedad
- Sangrado de las encías
- Sangrado en el cerebro
- Tendencia a sangrar
- La sangre no coagule adecuadamente
- visión borrosa y visión empeoramiento
- interrupción de la médula ósea
- Niebla del cerebro
- Sensación de ardor en la boca
- Dolor de pecho
- Fatiga cronica
- síntomas de tipo resfriado o gripe o resfriados recurrentes
- Coma
- Confusión
- tos
- la piel se arrastra
- El daño a corazón
- Muerte
- Depresión
- Dermatitis
- Diarrea
- Respiración dificultosa
- Dificultad para concentrarse y prestar atención
- desorientación
- Mareo
- Somnolencia
- Daño ocular
- inflamación de los ojos y el dolor
- Fiebre
- Perdida de cabello
- alucinaciones
- Los dolores de cabeza
- Pérdida de la audición
- inflamación del corazón
- Hemorragia – hemorragia interna
- inmunosupresión
- capacidad de aprendizaje alterada
- infecciones recurrentes
- Latido del corazón irregular
- Picazón en la nariz
- Ictericia (color amarillento de los ojos y la piel)
- Dolor en las articulaciones
- rigidez en las articulaciones
- Enfermedad del higado
- Presión arterial baja
- Malestar
- problemas de pérdida de memoria y la memoria
- Dolor muscular
- Náusea
- sangrado de la nariz
- Entumecimiento
- Edema pulmonar
- hemorragia pulmonar
- Los ojos rojos o inyectados en sangre
- Nariz que moquea
- Incautación
- Disfunción sexual
- Sacudida
- Choque
- capacidad de atención acortado
- reflejos ralentizado
- Dolor de garganta
- Congestión nasal, nariz tapada
- Estremecimiento
- Temblor
- vómitos
- Vómitos con sangre
- Debilidad
- La pérdida de peso, anorexia
- sibilancias
Mi esperanza es que se sienta mejor muy pronto. Por favor, sé que mientras yo no puedo responder a cada comentario, yo los leo y me duele el corazón de cada uno de ustedes que están sufriendo.
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