I’m in the process of making an appointment to see a specialist at the Perelman Center for Advanced Medicine in Philly, in their Sjogren’s Syndrome Program. I’m not looking for a different diagnosis, but an opinion on my path forward (as my GFR is now at an 18 therefore I’ve started the education process of dialysis since I’m much closer to being in Stage 5 of kidney failure, more on that in my next entry) from a more wholistic viewpoint. My current nephrologist is refusing to see my case as it is, complex and atypical. My hope is that this interdisciplinary approach and the doctors knowledge about the many complications surrounding Sjogren’s will offer me the information I’m looking for regarding how to proceed with dialysis. 

I am not the typical kidney patient. My symptoms and progression to End Stage Renal Disease are similar to most other kidney patients, yet a few of the assumed obvious ones, I do not have. Nephrology is complicated. Sjogren’s is complicated. Put them together and it’s a hot mess. Which pretty much sums me up! I’m a complicated person. I live my life with an odd sense of duality. I’m a hot mess. 

I truly hope that by sharing my story, by being the odd one, that I can give a voice, some validation, and healing to others. For when thinking about the legacy I leave behind, other than my son, I hope it’s that I’ve helped others and not stood silently aside while terrible atrocities and hate, generational poverty and systemic racism take from my sisters and brothers of the world. Love. Kindness. Compassion. Non-judgment. A hand up. A voice. That is the legacy I want to leave behind.