Sep 18, 2019
From Mary Baliker : Capitol Hill #NephCure advocates (at Hammond, Indiana) https://www.instagram.com/p/B2jyds2AMlD/?igshid=hhusa1u6yxas
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From Mary Baliker : Capitol Hill #NephCure advocates (at Hammond, Indiana) https://www.instagram.com/p/B2jyds2AMlD/?igshid=hhusa1u6yxas
In June of 2016, Lily was diagnosed with FSGS.
Unlike a lot of people with chronic diseases I don't miss my life before being sick. I know that I wouldn't be the mature, fun and whacky person I am today if it weren't for my disease. There are things I can't do, sure but in all honesty... Let me tell you something. Ironically you and me who have a chronic disease actually lead a healthier life than most without chronic diseases. I wanted you to know that because you are friggin AWESOME! Cheering for ya until the end!
Test results came out negative! Woop woop! Now enjoying some chocolate and tea ^^
Stuff is bad
I'm leaking a ton of albumin and the doctors aren't doing anything. Not yet anyways. Well, well. I'll be better soon! ^^
Uuuugh! I'm getting sicker, I believe and that's not too good. Gonna wait until tomorrow. If I feel worse we'll go to the hospital... I don't want any more prednisone! Dammit! And I was gonna be so productive with about everything.
What is Nephrotic syndrome?
Nephrotic syndrome is a nonspecific kidney disorder. It is autoimmune and in my case (As I have NS) albumin is elevated in the urine which id merely a symptom. When this happens It's the immune-system attacking the kidneys. Basically. That's the easy version. Without treatment I get kidney-failure and go on dialysis. I've had it twice. The meds are the worst though. Prednisone, making you go bipolar, depresed and anxious. It has a lot of side-effects and makes me incapable of doing anything right. Why? I can't control myself when on prednisone. So how can we get better meds? Research! There's an organisation working against NS and It's probably the only one too. They are working from the US, far away from me. Nephcure is their name ^^ So happy that they exist.
www.allieshope.com Last year I had the privilege to lead a team at the Nephcure Walk in Columbia,MD. Though there will not be an event like that I will be participating, I highly encourage you to check out, support and attend Allie's Hope in Reston,VA. Save the date!! The 2014 NephCure silent auction will be held Saturday, October 11 2:00 - 5:00PM. You won't want to miss the Video Scavenger Hunt for all ages! There will be beer, wine and baked goods for sale. It will be a good opportunity to meet people and understand the disease. More importantly, it will help us raise fund and awareness to fight FSGS. If you cannot attend, there are sponsorship opportunities available, so there are ways to help. The link: www.allieshope.com Thanks and God Bless!!