I’m incredibly sorry you’re also going through this. And that it’s taken so long to be diagnosed.

I guess I was one of the lucky few who got diagnosed rather quickly… within a few weeks. But that was probably due to the fact that all of my symptoms — water retention, weight gain, and shortness of breath, came on literally overnight. My BP was near stroke level.

Lupus Nephritis I was told. “At least it’s not cancer” I thought. Only in a way it kind of is isn’t it? I’m on the same medicine and strength as that of a cancer patient . I had a kidney biopsy done and found out I am basically functioning with the equivalent of one kidney. I was almost as bad off as I could be, mere “points” away from no return.

It sucks. No doubt about it. Especially since most people don’t understand it. Luckily I have an amazing kidney doctor who is on top of the game. Unlike my GP who made it seem like with a few weeks of medicine I’d be cured…

Big fat lie… obviously.

Nerve pain is the worse! I recently had shingles — thanks to my oh so lovely immune system. It was miserable. It still is. The symptoms last a few weeks to a year after it goes away… how lucky is that? And I can’t get the vaccine for an entire year…

I had to take off for 4 months from work. And everyone kept telling me how lucky I was to be at home all day. No not really. I was literally at the doctors office every other day for the first month. I could barely function. I was weak and nauseous. I couldn’t go more than an hour without being exhausted.

After awhile people stopped asking how I was. Especially once they realized that I really wouldn’t ever get better. I started having to cancel at the last minute. It sucks. Now I try not to make any permanent plans because my health varies day to day.

Thanks for sharing your story ♡♡