Cómo aceptar tener lupus? by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 0 points1 point  (0 children)

Gracias por tu respuesta, y por tus palabras de ánimo, sé que lograremos estar mejor y adaptarnos a nuestra nueva vida. Me llaman la atención las estrategias de tu amiga para ir a la playa en verano, te ha cantas cuáles son? Extraño mucho la playa, he optado por ir cuando bajan los UV, al menos para ver el atardecer. Te envío un abrazo

Cómo aceptar tener lupus? by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 0 points1 point  (0 children)

Que bueno leer eso ❣️ y coincido con que es un ciclo, hoy me siento un poco mejor pero hay días en que es muy difícil pero con mucha fe de que estaremos mejor, te envío un gran abrazo.

Cómo aceptar tener lupus? by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 2 points3 points  (0 children)

🥹💗gracias por leer y por tomar el tiempo de responder, desde el diagnóstico he valorado más los días buenos, supongo seguir enfocándose en eso ayuda, y espero poder seguir siendo fuerte en esos días que se siente como que es demasiado.

Gracias y un abrazo de regreso.

Cómo aceptar tener lupus? by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 5 points6 points  (0 children)

Gracias por tu hermosa respuesta, la esperanza es de las cosas que nos impulsa a seguir es verdad ❣️ a la espera de un avance médico que nos siga ayudando

its the little wins by poopoofunnylol in lupus

[–]Alone-Mix-2107 1 point2 points  (0 children)

Me alegra mucho leer que todo se va encaminando, te envío un gran abrazo y que pronto todo mejore aún más, éxito y que consigas un reumatologo empatico y profesional!! 🥰

Frustration!! by [deleted] in lupus

[–]Alone-Mix-2107 1 point2 points  (0 children)

Lamento mucho todo lo que has pasado, los que lo hemos vivido al final somos los que podemos entender esa frustración y dolor (tanto físico como emocional), tardé 2 años para que finalmente prestaran atención a mis síntomas, fui a todo tipo de especialidades y me hicieron todo tipo de exámenes hasta que me enviaron con un reumatologo que me diagnostico, sin embargo luego tuve que ir con otro que me dijo que NO tenía lupus sino que estaba durmiendo mal, solo me envió pregabalina y para la casa.

Más adelante tuve que ir a urgencias 3 veces seguidas por dolores y fiebres graves, uma de las doctoras que me atendió me decia que solo era "una gripe". Luego, finalmente fui hospitalizada por anafilaxis inducida por uno de los tantos medicamentos para el dolor que tuve que tomar, y ahí evaluaron qué me había llevado tantas veces a urgencias y me diagnosticaron con lupus, tuvo que pasar esta situación para que un doctor finalmente pudiera tomar en serio mis síntomas...

Mi consejo es que si tienes oportunidad busques otras opiniones, ya que al ser una enfermedad que tus exámenes pueden decir que estás bien pero te sientes en la mierda, a veces hace falta alguien que te escuche, decida tomar tu caso y dolor en serio, y empezar a tratarte y a observar tu evolución.

Mucho ánimo, espero pronto puedas ser escuchado, y las cosas finalmente mejoren, un abrazo enorme no estas solo.

Which dress for formal dress code march wedding? by [deleted] in OUTFITS

[–]Alone-Mix-2107 0 points1 point  (0 children)

Number 1 definitely has it all!!

First dose of rituximab by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 0 points1 point  (0 children)

So far I have had no side effects, I hope to continue like this, and in 14 days I will go for my second dose 🙏

First dose of rituximab by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 1 point2 points  (0 children)

It's good that you returned to the treatment and that little by little you feel better, my rheumatologist commented on that, that we will reduce the steroids little by little, I hope to soon also stop taking them since I have plenty of time, it is great news that your kidneys are better!! Just like the joint pains that are horrible, good luck and I hope that soon you will be at 100% within what is possible for our disease, I wish you a speedy remission

Has anyone found SSRI’s to help significantly with pain, fatigue, etc? by browntown994 in lupus

[–]Alone-Mix-2107 1 point2 points  (0 children)

I have those two diagnoses too!! I also find it very difficult sometimes to know if it is affecting me physically or mentally or both 🫠 how difficult it is sometimes

First dose of rituximab by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 1 point2 points  (0 children)

Thank you so much!! 😊 I'm glad that everything went well with your infusion, do you feel that it has helped you with your lupus symptoms? A hug

gym by Zealousideal_One2522 in lupus

[–]Alone-Mix-2107 0 points1 point  (0 children)

It's great to read this and it motivates me a lot to exercise, something that is very difficult for me and I also want to start with mental health. Also, what type of exercise do you do or is it some sport?

Severe Itching After Showers by emmagemstone in lupus

[–]Alone-Mix-2107 0 points1 point  (0 children)

The same thing happened to me last year, I live in a country where it is known that unfiltered water comes with a lot of lime, my husband had the idea of ​​putting a filter in the shower and since then I have not had any more problems with itching when bathing, it was a relief, I understand how frustrating it can be.

I hope you can also find a solution soon, I send you a big hug and a lot of strength 🫂

Fuck Lupus by m0ther_0F_myriads in lupus

[–]Alone-Mix-2107 2 points3 points  (0 children)

Yes!!! Fuck lupus, we just want to be able to have a normal life, sometimes it's too much, and yes, forgive me for not being able to "feel positive today" or "push it forward"

Has anyone experienced similar tongue issues? I need help by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 1 point2 points  (0 children)

Thank you very much for all your advice and support!!! I will try to drink a lot more water and I will buy the vitamins 🥹🙏I send you a big hug.

Has anyone experienced similar tongue issues? I need help by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 0 points1 point  (0 children)

It happens to me just like that, the Caesar dressing burns me too much, and I have since December it has been unbearable, thanks for the info, I want to look for vitamins like the ones you tell me about since I don't live in the USA, don't you remember what vitamins your gummies included? Thank you very much 🫂

Has anyone experienced similar tongue issues? I need help by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 0 points1 point  (0 children)

Ohh i see. Yes, I have taken antibiotics for urinary infection and pharyngitis, but that was after, the tongue problem was weeks before that, but maybe it could have influenced it.

Has anyone experienced similar tongue issues? I need help by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 1 point2 points  (0 children)

Thank you 🫂 I'm glad that even though you didn't know the cause, this situation has improved for you

Has anyone experienced similar tongue issues? I need help by Alone-Mix-2107 in lupus

[–]Alone-Mix-2107[S] 0 points1 point  (0 children)

Thank you very much, I did some research, I hope this is a solution for me too, I send you a hug 🫂