Sue J.'s Posts - Wellsphere

Hectic Holidays! by Sue J. Patient Expert

People's HealthBlogger Awards 2009 - Best 100 Winner!

Posted in: Blog Posts in Chronic Fatigue Syndrome I am sitting alone in our family room in a completely silent house, after a week of non-stop work and utter chaos! Ahhhh....silence and solitude. I can hardly believe it. ... Read on »

Low Expectations by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome How's this for a cold splash of water on the face? My lawyer just called about my disability hearing tomorrow. There are 5 disability judges in Delaware, and we have ... Read on »

A Season of Hope by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome I haven't had much energy left for blog writing the past two weeks, but the good news is that I have been using up all of my energy on some very worthy projects that give me ... Read on »

Movie Monday 12/10 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome Ah...it's been a whole week since I posted here. Sorry about that. I had a pretty good week, with just a 2-day crash (and emotional melt-down!) in the middle of it, but I' ... Read on »

Movie Monday 12/3 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome My younger son was home sick for three days last week (crash caused by a viral trigger) which would normally mean lots of movies, but he was only in the mood for TV! He was ... Read on »

Switching to Long-Acting Beta Blockers by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome (NOTE: I am not a doctor and do not intend to offer medical advice to anyone since we are all different. In this post, I am just hoping to share my own experiences with ... Read on »

Movie Monday 11/19 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome I was very badly crashed this weekend - one of those lost weekends when I was totally useless and trapped on the couch. So, the only thing I was able to do was read and wa ... Read on »

Emotional Cost of the Disability Process by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome I am in the final stages of my final shot at getting Social Security Disability. I have had ME/CFS for 10 years, applied to Social Security several years ago, and have alre ... Read on »

Update on Our Gluten-Free/Dairy-Free Diet by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome This post is long overdue, but things have been very busy around here. Way back in July, I wrote that my son, Jamie, and I would be trying a gluten-free/dairy-free diet on ... Read on »

Movie Monday 11/12 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome Ah, sorry for the long stretch of silence last week! I drove to Connecticut and spent the week taking care of my mom who had hip surgery recently. It was tiring, as ... Read on »

Movie Monday 11/4 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome I thought we'd spend our time inside during Hurricane Sandy, watching movies with the kids and reading aloud once the power went out. Ha! We never lost power - which was v ... Read on »

The Joys of Support by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome We got together again last night with our local group of families affected by ME/CFS (you can read about how our group got started here ). This is mostly families who have ... Read on »

Still Here! All is Well... by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome Sorry for not posting in a while. Hurricane Sandy kept us busy for a few days, then Halloween, and life is just now returning to normal. We were very lucky with the stor ... Read on »

Getting Nowhere by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome I am feeling overwhelmed today about how much I need to do that isn't getting done. This is pretty much a constant source of frustration for me, but some days are worse tha ... Read on »

In-Office Testing for Orthostatic Intolerance by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome (NOTE: If you don't know what Orthostatic Intolerance (OI) is or you have CFS but think you don't have OI, then please read this introductory OI post first. Briefly, OI ... Read on »

Movie Monday 10/22 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome A major sick week here at our house last week. Jamie, 18, was home from college for 4 days - a cold triggered a bad crash - and now all 4 of us have caught the virus! So, ... Read on »

Talking to School Personnel About ME/CFS by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome My son, Jamie, was home from college this week with his first bad crash of the school year. Fortunately, he started to feel bad on the weekend, so he ended up missing only ... Read on »

Movie Monday 10/15 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome Still struggling a bit here. Craig finally went back to school today, three weeks after his knee surgery! I know I said the same thing last Monday, but that was short-live ... Read on »

Fall 2012 CFSAC Videos, Day 2 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome So, scroll down to see the video clips form Day 1 of the recent CFSAC meeting in Washington, DC. And here are the clips from Day 2 Day 2 Opening Remarks and Agency Updates ... Read on »

Video Clips of CFSAC Meeting, Day 1 by Sue J. Patient Expert

Posted in: Blog Posts in Chronic Fatigue Syndrome Last week (was it only just last week?), I attended the Fall 2012 CFS Advisory Committee Meeting at the Department of Health and Human Services. I was only able to be there ... Read on »

Sue J.

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