March is autoimmune awareness month. In honor of it I’m posting infographics on my facebook and twitter sharing various autoimmune disease facts throughout the month. But a facebook poll from a fellow Sjogren’s patient got me thinking – and it lead me to a realization of how many types of awareness need increasing! Of course… 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
I’ve talked a lot about the guilt that comes with having a chronic illness – guilt that I’m not able to do some things with my kids, guilt that my husband and kids have to pick up the slack for me around the house, guilt that I can’t volunteer and help others like I would… 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 wrote about my experiences with Brain Fog earlier on this blog. It’s still happening, and probably increasingly so (both in frequency and severity). The following excerpt is a pretty good summation of how I’ve felt for the past few years. It’s from Susan McDermott, M.D.’s talk “Brain Fog and Other Central Nervous System Symptoms:… Read More
I had a neuropsych evaluation last week. The specialist in Philly (“Dr. D”) wanted me to have a cognitive evaluation completed before I began the Imuran (immunosuppresive) as a baseline to see if there are any improvements after I’ve been on the meds for a while. I received the report from that evaluation on Monday. … Read More
I saw this image on twitter recently and it first made me laugh…because, yep, that’s life. But then it made me sad. Remember back last spring when I tried the experiment to see if looking better would make me feel better? I first talked about it here and then updated here. I’d decided to put… Read More
Last week Britt Johnson (@HurtBlogger) decided to go live with chronic disease. She described her experiment in a blog post and then live tweeted her life for 48 hours with #ChronicLife. Others joined her and found solidarity among the masses and freedom in the ability to “say it like it is.” Some started to honestly… 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
While my daughter is in dance class I work at the front desk at the dance studio. I do a lot of computer work (her website, studio management software, tuition billing, etc.) and during this time of year I help out with costumes. We’re getting ready to start competition season and there are a whole… Read More