Now that I’m determined to begin writing again for my own mental and emotional health, I’ve realized that sometimes I don’t know where to start. I have a list of topics I want to address – but the problem is that they’re so intertwined that I don’t know which one to start with, or how… Read More
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
I saw this image posted somewhere – some facebook or twitter or something. I saved it to my phone to write about some day and while I was flipping through my photos yesterday looking for an old one of the kids or something I ran across it. Yes. This. I have been the idiot that… Read More
I haven’t written anything in a while – mostly because I just haven’t known what to write because so much is going through my mind these days. It’s taxing and complicated to have autoimmune disease yourself. It’s a million times worse to watch it happening in your child. I’m so very thankful that I’ve gone… Read More
You may remember when I wrote about my 9 year old having an episode of alopecia areata last summer. It was heart-breaking and gut-wrenching for me. The spot filled back in after the treatment the pediatric dermatologist gave us to use and I prayed and hoped that it would be the end of it, that… Read More
In the past year and a half that I’ve been writing this blog I’ve slowly been becoming more involved in the chronic illness social community – the Sjogrensworld.com blog, following twitter and facebook people that are advocating, struggling or otherwise talking about life with chronic illness (most of them with autoimmune diseases or fibromyalgia) and… 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
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
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
It’s frustrating when things are “normal” yet you know they’re not “normal”! My EMG/NCS was normal. My muscle enzymes are normal. All of my MRI’s (head, spine, thigh) have all been normal. Even my sleep study was normal. Yet I have fine motor control/dexterity/muscle issues. All of these tests (with the exception of the sleep… Read More