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jaesun

9mo ago

Seeking Advice for Handling Lupus: Need Help!

vent, & wanting advice for handling lupus please & thank you i finally was diagnosed with lupus a few days ago, my ANA came back positive & identification came back with lupus. after over 10 years of suffering, i finally have a name for it, and that its not in my head! im more glad that its not anything worse, and looking forward to actual relief and treatment soon. my kidneys started attacking me about 2.5 years ago. i have had 5 kidney infections within that time. none of my doctors thought it was autoimmune related until i brought it up, and then connecting every individual problem i had been coming in for; they thought an ANA test would make sense and a good idea. Now i am in the process of finding a rheumatologist. i am still unmedicated until i find a provider, my left kidney has been in a constant flare since march. i express constantly how much i worry about my pain & kidneys. i get my kidneys checked often. I even remember so many moments back in middle school, being in the sun would have me break out into rashes, and my pores would start bleeding. i still experience this at times, but am more careful. i am extremely new to lupus, even while living through it. i also have interstitial cystitis, another autoimmune bladder condition. so, i have a low sodium, less acidic & spice diet. if theres any things i need to keep in mind, be weary of, or to avoid, id really appreciate it! i know the basics for diet changes. but just general life things. im trying to learn how to be kinder to myself. its hard to not have energy, and see everything i cant have or do right in front of me. and even if i cant do them, i tell myself that its okay because its still going to be there. energy is just hard to come by, and usually when i wait til i have energy, i have a much better time than if i were to force myself on a bad day.

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