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Boot_WritingSpider
2y ago
Dealing with Lupus Diagnosis and Loss of Support System
Hi, I'm a little new to this. I was diagnosed with Lupus back in 2019. I'm still not 100% on which type I have because it was caught pretty early. I'm sort of just going by symptoms. At the time it was something I could talk to my Dad about because he had it too, but his diagnosis wasn't caught early and he struggled with it throughtout my adolescence. He passed away back in 2020. My doctor has also since retired so I'm pretty nervous about what happens next, and I don't really have anyone I can talk to about it.
Your answer
JustcallmeOmi
2y ago
I’m so sorry about your father! I can’t even imagine the pain of losing mine and I’m sure you find it hard to explain the level of pain it causes you. Gentle hugs.
I’m new to lupus, too. Just diagnosed this year, but have had symptoms for well over 10 years. Took the right rheum doing the right testing to get that diagnosis. 16 vials of blood. It was insane. I’m in stage 4 fibrosis/cirrhosis of the liver partially due to being undiagnosed.
I just found this doctor. He’s amazing. I can’t imagine having to find a new one all over again. Took me a decade to find him. Same with my PCP. Luckily, she’s fairly young.
Can he recommend someone to replace him? Maybe the staff at his old office can reach out to him for you. Or maybe your PCP can recommend one?
I am so sorry you are going through this.
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