I follow a blog [wherearemypillows.com] written by a woman with a rare disease called autoimmune encephalitis (AE), which causes the immune system to attack the brain and spinal cord. It causes a variety of neurologic and psychiatric symptoms. Like a lot of rare diseases, it’s often misdiagnosed, and reaching the right conclusion takes time. Because … Continue reading Milestones →

Hello! It’s been a while! I feel like a fair amount of things have happened over this past month, although nothing earth-shattering or treatment-changing. I got the results of my mammogram—negative for any concerns. That was good news of course. It’s not something I dwell on (honestly, I don’t dwell on much), but of course … Continue reading Pipe Cleaners →

I was supposed to be off this whole week, but I screwed up my schedule and accidentally put myself in clinic on Monday. That sucked but it was only one day. Until I got violently ill the evening before. Man, it just came on out of nowhere! I had to call in sick Monday morning. … Continue reading Vacation Week! Woo-hoo! Except Not. →

March is National Kidney Month! How lucky am *I* to have two “special” months in a row? Yep. Special all right. I read on one site that 40% of people who have significant kidney disease are unaware/ undiagnosed. Another trusted site said NINETY percent of people are undiagnosed. That’s crazy. It’s a leading cause of … Continue reading Shots and Labs and All That Jazz →

It’s that time of year again! February is Rare Disease Month, and the last day of February is Rare Disease Day. There is a whole campaign around this, with online events, seminars, walks to raise awareness, appeals to governments for more research money, etc. It started in 2008 in 18 countries but now it’s observed … Continue reading Rare Disease Day →

No earth-shattering news, just a roundup of some miscellaneous things over the past month. It’s now been two years since my official diagnosis with this blasted disease (“proliferative glomerulonephritis with monoclonal igG3 kappa deposits,” for the record). I still have to refer to the note in my phone when I tell a doc what I … Continue reading Catching Up →

Well damn. 2022. Nothing much more to say about that. I hope everyone enjoyed the holidays and got some time away from work. I had about a week and a half off, and it was glorious. I didn’t do anything but LOVED not having to get up at dawn’s crack. I also had the last … Continue reading Movin’ On Up →

Wednesday’s lab visit was mostly routine. My hemoglobin was 9.8 so I did get an Aranesp shot. It had been a little over a month since the last one. My creatinine was back down to 1.3 (it was 1.5 last week) so perhaps the dehydration was responsible for the increase. My eGFR was 46. Today … Continue reading Beat the Time →

Vacation is over. Back to the grind. We did have a lovely time in Silver City. And I did make it up to the ruins at the Gila Cliff Dwellings. I felt like crap though. It was very reminiscent of the Acropolis, in that I was scrambling from one place to sit to another. I … Continue reading The Routine Beckons →

Costa Rica, October 2019. That was the last time I took a trip. (No, I am not counting my drive to Pennsylvania last summer. There was not an ounce of pleasure in that trip.) Obviously 2020 was a wash travel-wise for everyone. I had planned to go to Hawaii with Rose in the spring and … Continue reading Stepping Stones →