I talked a while ago about my Mamaw and how I’m pretty sure she had Sjogren’s Syndrome…and I also talked about her very special way of saying “I told them…” often when people didn’t take her advice or listen to her. It’s pretty iconic of her and I can still hear the way she says… Read More
My disease is starting to feel like a full-time job (at least very least a half-time job) and they way in which the doctors are going about structuring this job is lousy! Feb 14th I had an MRI of my cervical spine. This was done to try to figure out the cause of my fine… Read More
When talking with my rheumatologist today about my concerns, I was trying to stress that it’s not the dry eyes and dry mouth (the “hallmarks”) of Sjögren’s that is concerning me…it’s the fatigue, muscle weakness, loss of fine motor control, joint pain, etc. If it was just the dry eyes and mouth I would be… 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 went for my follow-up appointment with the rheumatologist today. (Hang in there through this post…there’s some background info to get through before you get to the zinger of how I know this doctor had no empathy for what I’m going through!) In case you haven’t read previous posts, the short story is: Two rheumatologists… Read More
There seems to be a “sweet spot” for diagnosis and for people reacting to what’s going on with you in a way that reaffirms what’s happening. I was 31 when I first reported symptoms to my PCP and optometrist. I know that I was younger than that when symptoms first began showing up. It took… 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
Along the pathway to diagnosis, I have been riding on a medications carousel. When I was first diagnosed, everyone said “It’s not like it used to be – there’s so many more medications available now than ever before…it’s much easier to treat than it used to be.” That gave me hope and helped keep my… Read More