Sunday, April 3, 2016

Please Watch This Video

NephCure Kidney International, in partnership with the National Kidney Foundation, has just released a new video -- and it resonated with me. I'm sharing the link here in hopes that others will watch the video and learn more about the Nephrotic Syndrome journey.

As NephCure CEO Mark Stone said in his email release of the video, Nephrotic Syndrome can be difficult for patients and caregivers to explain, and difficult for friends and family to understand.

I know that I struggle to explain how I'm feeling about this disease; perhaps the video will do a better job than I do.

Thanks for watching. 


Tuesday, January 26, 2016

Shingles > Fibrillary Glomerulonephritis

So a funny thing happened when I had shingles a few weeks ago.

People understood. Everyone had heard of shingles. Most people I told had either had shingles themselves, or had a close family member who once did so. That's not surprising, as one in three people will have shingles at some point in their lives. (Get ready. And yes, it sucks.)

I went to urgent care within 48 hours of the outbreak, so I was given a seven-day course of an anti-viral medication called valacyclovir, and the drug worked well for me.

What struck me during this episode was that people understood how I was feeling, and that never happens with my kidney disease or liver disease. Those are invisible and a bit harder for people to understand. "But you look OK," people will say. "I always forget," others tell me.

With shingles, people looked at me like someone died. "Oh I'm so sorry."

There was a small patch of shingles on my back, and the pain was a combination of burning fire and needle poking. But people heard, and would talk to me about it, and share their own personal shingles story. Fibrillary glomerulonephritis makes me feel isolated and alone. Shingles made me feel like I got invited to a party where all of the cool kids were. I was in the club.

It may sound silly, but having shingles wasn't that bad. There was a treatment available. My case was mild and didn't spread. And once the nerves in my back calmed down and the blisters crusted over, well then the healing began.

There was a beginning, and there was an end.

It's true.

Shingles > Fibrillary Glomerulonephritis.