I love that blogging is a kind of conversation. I read something on one blog, something else on another, get to thinking and the next thing I know I’m putting a post out there that adds to the conversation. Today I read two that got me writing this one. The first was a post by… Read More
I’ve been in several conversations lately about the need for patients to get their medical records and data. I wrote a post recently about the need to read our medical records as I found 16 errors in the write-ups from 6 visits with a doctor. Julie Ryan asked me to write a guest post for… Read More
When I came back from Philly I had an action plan. The dr made sure I took careful notes and knew what to do first, second, and so on. My first step was 2 weeks of prednisone to determine which symptoms would be relieved (because they were due to inflammation) and which wouldn’t (because they… Read More
I try, despite how it may look on this blog, to stay positive while dealing with all the crap that Sjogren’s entails. However today I will rant. I witnessed an amazing family watch their 18 month old son dying in the PICU yesterday without any warning, rhyme or reason. I’ve known the mom for years… Read More
Thank you so very much to everyone that has emailed, tweeted, messaged, prayed for and thought about me as I went to Philly to see a Sjogren’s specialist after my non-satisfying experiences with local doctors. The experience was definitely worth the time and expense of the trip! He was a wonderful doctor – thorough, asked… Read More
In prep for my visit to Philly next week to see a specialist, I have been organizing and summarizing my medical records. I went through the process to obtain them all this summer (Rheumatologists Dr. A, Dr. B and Dr. C, Ophthalmologist Dr. O and Neurologist that I just realized I never “named” so let’s… Read More
After writing my post about Deja Vu and realizing that I’m pretty much exactly where I was a year ago despite spending 8 months working with doctors at KU Med (which equated to an average of 20% work-hour lost time with all the appointments and traveling back and forth), I started to feel like I… Read More
I know that there are millions of people that suffer with Sjogren’s and millions more with other autoimmune diseases or any invisible chronic disease. Over the years I’ve found places where people share their experiences and ask questions. A great one for Sjogren’s is SjogrensWorld.org. I was scrolling through some posts this morning while munching… Read More
I was thinking about writing a post today about all of the issues I had over the long holiday break due to my stupid autoimmune disease. But when I sat down to start writing I had a vague memory of one from last year. So I looked through my old posts, and sure enough there… Read More
Thank you to all that have commented and emailed me as I began writing this blog to encourage me to continue to share my experiences with Sjogren’s, autoimmune disease, chronic illness, chronic fatigue, un-diagnosis, mis-diagnosis, bad doctors and more! I’m thrilled to announce that my book, “As My Body Attacks Itself” is now available on… Read More