My last post was July 2015. It’s now November 2017. I’m not sure at all, even in the slightest, how 27 months have gone by. I have thought many, many times about what I want to sit down and write and I never have gotten to it. But several things happening lately have convinced me… Read More
My husband and I were on the way home from a parent meeting for parents of kids going into middle school next year (first, let’s stop and acknowledge that I’m so not ok with my boy growing up!). I don’t even remember how it came up but I described to him just one example of… Read More
So when the doctor completely reversed his plan of attack after 8 months with zero explanation (which lead to me “firing” him and traveling half way across the country to see a Sjogren’s specialist), he did give a slight explanation… He said that treating my Sjogren’s with immunosuppresive meds would be “like killing an ant… 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
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
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
You may have read my reaction to my latest rheumatology appointment. When I was told the treatment that my doctor had been talking about for 7 months had all of the sudden become “unwarranted” in his mind. I’m still not through my “I have to get through these three weeks before I can process what’s… Read More
I’ve been putting off posting this – mostly because I’m putting off dealing with it all until I can come up for air and do so properly. See, it’s what I call “crazy season” – it’s the time of year that’s filled with graduations, end of school events, dance recitals (and final competitions for the… Read More
If you’ve been following along on my blog, you know that I switched to KU med (teaching hospital an hour away from where I live) last October. This was after two years of incorrect diagnosis, figuring out correct diagnosis and 8 different medications that either didn’t work at all or, even worse, I reacted badly… Read More