Sometimes it takes me a while to put together different pieces of information with this whole health-issues thing! This week I was sitting at my cubicle desk working and complaining to myself in my head about how I always feel sweaty yet cold and clammy. All of the sudden I thought “wait – that’s how… 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
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
I now think going to the doctor when you’re miserable in pain is the equivalent of going to grocery store when you’re starving – you’ll grab at anything that fixes your immediate problem, no matter how bad it may be for you! Although a doctor seeing you in pain may help them take you more seriously (how… 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 talked about my issues with questioning diagnoses, switching doctors, getting second opinions. I want to be a “good patient” and I, in general, trusted what medical professionals told me. I didn’t suggest tests or labs, I didn’t second-guess diagnoses, I didn’t “fire” a doctor even when I felt like they weren’t meeting my needs.… Read More
I wrote in my last post about my increasing muscle weakness. I’m afraid that was just the beginning. It’s continued – sometimes worse than others, but almost always present since then. It’s primarily in my quads and upper arms. Going up stairs (even the half-flight in my house) is becoming difficult – especially if I’m… Read More
As I mentioned in my last post, I was scheduled for an appointment with a neurologist after being able to more accurately and effectively communicate what’s going on with my hands. I’ve tried to describe it consistently as “they just don’t work right…they don’t do what my brain tells them to do…they’re clumsy and weak…I… Read More
I didn’t realize, and I would guess most people don’t, that every time you see a specialist they send a letter back to your primary care physician. I first realized this in 2011 when I asked my PCP’s nurse to copy any information from my first visit with a rheumatologist in 2008. I expected to… Read More