Fight Lupus by loving yourself

LizelleLizelle Member New Member
Hello, 
My name is Lizelle Tayler

I was diagnosed with SLE on the 5th June 2018

I decided to go to the doctor because all my joints started swelling and it became so painful that I couldn't walk. 

At first the doctor said that it's rheumatic atheritis but second and third doctor confrimed that is was definitely and autoimmune disease called Lupus. I was admitted into hospital immediately. 

After 2 days they discovered that there was 2 blood cloths on my left lung due to lupus,  because in hospital i had some chest pain. I was immediately sent to high care for 3 days. They put me on warfarin since then.... 

I was released from hospital on the 12th June 2018..... 

The fatigue and swelling of my body something that I struggle with.... 
My senses are affected as well and some dark black spots have developed on my toung.... Having physical strength is not easy.. Considering that I am a very strong and active woman.

It has been about two weeks now and i wish that i can wake up tomorrow and it's all just a dream. 

But it's not just a dream... I had to just come to the reality of what is happening to me.

Everything is just so new to me It's quite over whelming, especially with medications, blood tests and finances. 

I know that there is a light at the end of this dark tunnel. 

I have been surviving by my faith In Jesus this far, I know that God can heal us. I know that there is hope and healing. I can't see it now. But I know that it's out there. 

This is my story

Comments

  • lupitalupita Member New Member
    Hello Lizelle. 

    That is my case. I'm from Spain (sorry for my pour English). I was diagnosticated one month ago. In the first time, I felt alleviate because my pain in my body it was very bad and I needed to put a name of that. But now I feel very bad because I'm in flare-up and it is very frustrating. 

    I have fear because in frare-up I can't work. I question about how do it for work people with lupus? I'm thinking about Selena Gomez. She can go her gigs... how can she has so much strength? 

    Thank you for that chat. 

    XOXO 
  • soninsonin Member New Member
    lupita dijo:
    Hello Lizelle. 

    That is my case. I'm from Spain (sorry for my pour English). I was diagnosticated one month ago. In the first time, I felt alleviate because my pain in my body it was very bad and I needed to put a name of that. But now I feel very bad because I'm in flare-up and it is very frustrating. 

    I have fear because in frare-up I can't work. I question about how do it for work people with lupus? I'm thinking about Selena Gomez. She can go her gigs... how can she has so much strength? 

    Thank you for that chat. 

    XOXO 
    hola  Lupita. Mi inglés tampoco es bueno así que aprovecho la ocasión contigo. Yo he sido diagnosticada hace un mes. Empecé con hipotiroidismo de hashimoto pero las articulaciones seguían molestando (no doliendo) y la analítica determinó que era LES y la biopsia de riñon que tenia una nefritis estado 4 (no notaba nada, sólo cansancio pero nada de dolor, ni siquiera me lo creía al principio). Desde la semana pasada estoy con una fuerte medicacion, además del dolquine, prednisona 60, y mifenax además del resto de arsenal para prevenir efectos secundarios de la bajada de defensas que me producirá. me encuentro con ánimo y hago lo que me pide el cuerpo. Mañana intentaré hacer ejercicio para contrarrestar la inchazon de la cortisona que cada vez es mayor. Tengo optimismo hasta ahora porque no he sufrido  dolor tal como se describe en muchos casos, pero me da miedo despues de leer tantas cosas y de lo mal que lo pasa la gente. espero mantener la cabeza fria y vivir el dia a día sin obsesionarme con infecciones, o con empeoramientos. Necesito un grupo de apoyo que haya tenido resultados positivos o al menos para compartir mecanismos positivos para superar el día a día juntos. Saludos desde Galicia 
  • soninsonin Member New Member
    sonin dijo:
    lupita dijo:
    Hello Lizelle. 

    That is my case. I'm from Spain (sorry for my pour English). I was diagnosticated one month ago. In the first time, I felt alleviate because my pain in my body it was very bad and I needed to put a name of that. But now I feel very bad because I'm in flare-up and it is very frustrating. 

    I have fear because in frare-up I can't work. I question about how do it for work people with lupus? I'm thinking about Selena Gomez. She can go her gigs... how can she has so much strength? 

    Thank you for that chat. 

    XOXO 
    hola  Lupita. Mi inglés tampoco es bueno así que aprovecho la ocasión contigo. Yo he sido diagnosticada hace un mes. Empecé con hipotiroidismo de hashimoto pero las articulaciones seguían molestando (no doliendo) y la analítica determinó que era LES y la biopsia de riñon que tenia una nefritis estado 4 (no notaba nada, sólo cansancio pero nada de dolor, ni siquiera me lo creía al principio). Desde la semana pasada estoy con una fuerte medicacion, además del dolquine, prednisona 60, y mifenax además del resto de arsenal para prevenir efectos secundarios de la bajada de defensas que me producirá. me encuentro con ánimo y hago lo que me pide el cuerpo. Mañana intentaré hacer ejercicio para contrarrestar la inchazon de la cortisona que cada vez es mayor. Tengo optimismo hasta ahora porque no he sufrido  dolor tal como se describe en muchos casos, pero me da miedo despues de leer tantas cosas y de lo mal que lo pasa la gente. espero mantener la cabeza fria y vivir el dia a día sin obsesionarme con infecciones, o con empeoramientos. Necesito un grupo de apoyo que haya tenido resultados positivos o al menos para compartir mecanismos positivos para superar el día a día juntos. Saludos desde Galicia 
    y si. Tambien me pregunto en que trabaja la gente con lupus.... Yo soy guía y el estar todo el día bajo la luz solar creo que no sera buena idea de ahora en adelante.
    Tendré que replantearme todo con 36 años, incluso el ser madre porque con este tratamiento es prácticamente imposible no acabar menopausica.
    Pero vamos adelante y piano piano encontraremos camino. El 50% de todo esto se consigue con la cabeza,,,ánimo!!!!!!!
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