ES 
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For a while, I would have flu like symptoms on and off, and no one else around me would be sick. The nausea, dizziness fatigue and sometimes vomiting was not only difficult, but it really kept me from doing a lot. It sure didn’t help me in the friends department. I had hematuria and proteinuria show up in lab work, but nothing else alarming to suggest that anything was wrong. I eventually just stopped questioning it, and figured that it was just the way I was.
I’ve learned to focus on the cans instead of the can nots.
During my one and only pregnancy in 2011 is when the symptoms really amped up. The 1st 10-11 weeks went really smoothly, then the swelling, constant vomiting and fatigue really set in. I was put off work at 12 weeks along due to the swelling and being so ill. I was wearing shoes 3 sizes bigger, and could only stand for very limited amounts of time. I was not “glowing” in any way 😅 All of the symptoms could be chalked up to a difficult pregnancy, and I never really thought much more about it.
I was blessed with a healthy baby girl, and my symptoms basically disappeared rather quickly following. I lost the weight quickly, and was feeling great once I was all healed up from a C-section. Fast forward to 2014 and back came the “never ending” flu. I could barely keep anything down, and became dehydrated. I gained 40-45 pounds within just a couple of months. I felt so horrible, and I didn’t even recognize the woman looking back at me in the mirror. I had such low energy, and it took everything out of me just to do the basics.
From 2014-2020, this happened on and off and at one point began to think that it was all in my head. I basically gave up, and became really down. In the Fall of 2020 I ended up at Emerge again with dehydration. When the Doctor walked in to the room, I had a mini meltdown and told him what had been going on. He ran some lab work, and following the results he put in a referral for me to see a Nephrologist. Following a biopsy, I was diagnosed with FSGS in September 2020. It was like a weight lifted off my shoulders just knowing what it was.
I have had my good and not so good days, but I’ve learned to focus on the cans instead of the can nots. I am learning how to balance things, and to be a little less hard on myself. I am still learning what I can about FSGS, and I’m hopeful that I’ll remain stable for a long time. It can be lonesome dealing with a chronic illness, and a support system is so important. I’m so blessed to have a supportive partner and family, but I sometimes don’t want to burden them with my worries. I have found a wonderful support group on social media, and it’s a wonderful and judgment free place to voice your concerns. It’s also a place of hope and not feeling so alone in your journey with a rare kidney disease. I am looking so forward to attending my very first Nephcure conference this April in NYC, and connecting with some amazing people.
I have my rough days, but I am blessed and grateful for my life and everyone in it. Remember that it’s totally okay; necessarily really to rest and sometimes say no when need be. Don’t forget to be gentle and compassionate to yourself.
