Laura Hillenbrand Article Alert!
There is a really good article today about Laura Hillenbrand in the New York Times. It is one of the most positive I have read so far and they talk at length about ME/CFS. Laura even explains why she is now coming out and talking about ME/CFS. Here is an excerpt to whet your appetite!
The Never-Ending Sneeze
I’ve been sleeping pretty well lately, actually I’ve been sleeping a lot. Several days this week I’ve slept till noon (or close). I think I’m coming down with a cold as I can’t seem to stop sneezing. When it started yesterday I thought it was just another random sneezing fit. I’ve been having a lot of those over the last month or so. I just start sneezing and it goes all day. The first few times this happened I thought I was coming down with a cold, but the next day I’d be just fine. When the sneezing fit started yesterday I assumed it was the same thing.
One Good Day And You Are Ready To Give Your Lilac Away
I am making more and more friends with Fibromyalgia, and I am noticing something. We seem to be blessed with a decidedly short-term memory impairment. Even 1 good day after 5 days in an Amethyst cavern and it’s like SHOWTIME! We begin the great race to catch-up on everything we are so horribly behind on. Laundry, cleaning, correspondence, work…does not really matter what it is, the point is we so easily forget the pain from the previous flare and darn it if we don’t induce another one with our bevy of activity! I am queen of this melodrama. So sick and tired of having to sit around all the time, I spring up and leap at the chance to accomplish, contribute, not be dependent.
Open-minded towards CFS and XMRV
I had my long-anticipated first visit with an Infectious Disease doctor. It went as well as could be expected. He knew a little about CFS, and even less about XMRV. And here I come in, telling him I have CFS and am XMRV positive. What did I expect? That he would turn around and write me a prescription on the spot? No, of course not. What I expected — and hoped — was that he would be open-minded and intellectually curious. Which he was.
Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board
The last CFS SEP Panel, heavy with immunologists and other CFS researchers, was remarkably changed. (Unfortunately Dr. Klimas called the number of grant proposals was ‘pitiful’ – so it’s not clear how helpful they were.) The present panel is remarkably different from the last one and not in a good way. Now we have an in-between panel; it’s a mix of pain (FM ie dental) and CFS and other researchers. It’s better than most CFS SEP’s (a third of the researchers have some CFS research experience – but it’s mostly dominated by pain researchers again.
The Shelter of God’s Wings When in Pain
I enjoy birds and this winter as I have watched them at my feeders, I have been reminded of some Scripture passages mentioning God’s wings. God’s wings provide safety and refuge. In Psalm 17:8 David asked the Lord to hide him in the shadow of His wings, protecting him from danger and attack. I may not have physical enemies attacking me but Satan is continually attacking me with fears, despair, discouragement, and countless other negative thoughts. When I cry out to God for His protection, His Word and Spirit are my refuge.
MISSION POSSIBLE: Ousting Dr. Myra McClure from the NIH Committee to Approve ME/CFS Grants
Here is an excellent protest letter written by ME/CFS patient Patricia Carter on the occasion of the appointment of Dr. Myra McClure to the Center for Scientific Review Special Emphasis Panel, which approves National Institutes of Health grants for ME/CFS.
Heart Rate and Post-Exertional Crashes in CFS
I’ve been meaning to write this post for a while now. Sorry for the delay – we’ve had some very stressful weeks here lately. I want to explain what I’ve learned in the last couple of months about how monitoring heart rate can help someone with ME/CFS to avoid post-exertional crashes. At the end of last year, I posted a link to an excellent article called “Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope,” which explains how monitoring your pulse rate can help you to stay within your limits and avoid the crashes we are all so familiar with.
Mission 2011: Mary Poppins and the Symptom Log
About half-way through the month of January, I had a “light bulb” moment. I realized that I overlooked a topic that would have been the logical start for my Mission 2011. In hindsight, I probably should have kicked things off by charting my symptoms and assessing my baseline, then tracking what I am doing and the resulting improvement (or lack thereof) every day.
Struggling & Depression Seem to Go Hand in Hand
Even though I go through periods of managing quite well with my depression, more often than I care to admit I’m struggling. I know what helps me manage, and I know I’m not doing all those things. Clearly getting back to some of the strategies that keep me functioning well has to be a priority. But how in the world do I do it? Everything little thing feels overwhelming and seems out of reach.
‘Fibro Fog’ Isn’t Just for Fibromyalgia Anymore
The memory and concentration problems frequently known as “fibro fog” or “brain fog” are common in fibromyalgia and chronic fatigue syndrome, and new research shows that they’re also common in people with chronic spinal pain. In the study, more than 17% of participants with pain said they had trouble with concentration, while just over 20% said they had problems remembering information. They did worse than healthy people in tests gauging memory, attention, mental flexibility and dealing with numbers and letters.
Daily Record-Keeping May Boost Fibromyalgia Care
Daily electronic records of symptoms can help fibromyalgia patients and their doctors better understand the condition, a new study shows. Researchers gave 81 women with fibromyalgia a personal digital assistant (PDA) device. The patients used their PDA to report pain, sleep problems, emotional distress and other issues three times a day for 30 days. The researchers at the University of Utah and University of Washington believed that this ability to immediately report symptoms would prove more effective than asking patients to recall symptoms at their periodic visits with their doctors.
Gluten-Free Diet can Ease Fibromyalgia Pain
A good friend of mine asked me recently, “What do you eat?” Since going gluten-free over a year ago, and vegetarian for the past several months, it is a question I am asked frequently. And truthfully, it is a hard question for me to answer. Not because I have not been cooking and eating some pretty amazing food, but because I am a complete free spirit in the kitchen, and I seldom make the same thing twice.
Venting – Fibromyalgia
It’s kinda funny that today the topic is Venting: What’s going on in your life right now that’s driving you nuts? Like I need encouragement to vent, right? I feel like I vent way too much…but since they asked… I have to say what is driving me most nuts is that the medical community is not up on all the medical conditions. I don’t have any life-threatening illness but I have been diagnosed with Fibromyalgia which I think the medical community has done an injustice to. Yes, it does mean that the medical community (well at least some of it) recognizes that there are people who live in pain and they aren’t sure why, but it does exist.