Gifts Created by and for Spoonies
Living With ME/CFS
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6d ago
(Note: spoonie refers to anyone living with chronic illness and disability.)  This holiday season, why not help to support your fellow chronic illness peeps by purchasing cool, unique gifts created by those with chronic illness and disabilities? Or maybe you deserve the gift of self-care for the new year! When I put out a call for gifts created and sold by those with chronic illness, I was inundated with all sorts of wonderfully creative items! Some are made specifically with spoonies in mind and others would make great gifts for anyone on your list. And you'll be helping to support fel ..read more
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Giving Tuesday 2022 - Help ME/CFS and long-COVID Patients
Living With ME/CFS
by
1w ago
Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring do ..read more
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Chronic Illness Vlog 11/21/22 - Trying Treatment Changes
Living With ME/CFS
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2w ago
Not much time this week. We're rushing to get ready for a trip to my hometown (Rochester, NY) for Thanksgiving. I'm not in great shape, but I'm not in awful shape, either. I made a change today that I hope will help me get through the long holiday weekend! And that's a lot of what last week's Chronic Illness Vlog is about - making changes in my treatments. Happily, the result, as you'll see here, is that I am finally feeling better and able to do more. You can watch the latest vlog on Youtube or below: I'm a bit anxious about the trip and how I've been feeling, but I'll feel better once we ..read more
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New Diagnostic Codes for ME/CFS and Long-COVID Now Active!
Living With ME/CFS
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2w ago
I thought I already wrote about this exciting advance for patients of ME/CFS and long-COVID, but I can't find it among my blog posts. Well, it's been a rough few months--it's entirely possible I never got to it! So, here's the big news: Effective October 1, updates to the ICD-10-CM, the U.S. version of the International Classification of Diseases, will include ME/CFS--using both terms, myalgic encephalomyelitis and chronic fatigue syndrome--and also long-COVID. ICD codes are the diagnostic codes that doctors must use each time they consult with a patient--insurance companies require them. In ..read more
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TV Tuesday: So Help Me Todd
Living With ME/CFS
by
3w ago
I included trailers for several new TV shows we wanted to try in my Fall 2022 TV Preview post, and one of our favorites from that group is So Help Me Todd. We are really enjoying this crime drama that mixes in family and a great sense of humor. Marcia Gay Harden plays Margaret, a successful lawyer at a top law firm in Portland, OR. She is always dressed beautifully and perfectly poised. Her son, Todd (played by Skylar Astin), is her opposite, living life from the seat of his pants and the black sheep of their very accomplished family. Todd lost his private investigator license for some illega ..read more
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Outdoor Nature Vlog & Good News!
Living With ME/CFS
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1M ago
The good news is that I finally seem to have come out of this months-long relapse that has trapped me on the couch since August! I made one medication change three weeks ago and two more last week, and I felt really good most of this week. I am pretty much back to my normal baseline, though my stamina is low after not doing anything for months. But I took my first walk in over 3 months this week, with no crash afterward! It's been a complicated situation, so I will write a longer blog post next week, explaining what helped me. Best of all, we finally got our camper back from the repair shop ..read more
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Chronic Illness Vlog 10-31-22 & Happy Halloween!
Living With ME/CFS
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1M ago
Last week's vlog shows an honest view of my life with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), Lyme disease, and Orthostatic Intolerance (OI). I am still--slowly--working my way back from this months-long relapse, but I am definitely seeing improvements. I actually went OUT last week--three times!--and enjoyed a fun weekend. That's a big step forward. I'm still on the couch today and still achy, but I'm much more functional than I was a few weeks ago, when I was unable to even sit up briefly. As always, you can watch the video on YouTube or I'll imbed it below. However ..read more
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ME/CFS and Long-COVID New Research Summary
Living With ME/CFS
by
1M ago
It's been a long time since I wrote one of these research updates, but I've got about 20 open tabs in my browser with exciting studies on ME/CFS and long-COVID that I want to share with you!  The research into myalgic encephalomyelitis and chronic fatigue syndrome has been encouraging for many years, as scientists figure out more and more pieces of the puzzle. However, the high incidence of long-COVID and its connection to ME/CFS has resulted in an enormous increase in both research interest and funding. Expect to see a whole lot more coming soon! In the meantime, here are some quick ov ..read more
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Interview on Chronic Illness and ME/CFS
Living With ME/CFS
by
1M ago
Last week, I was interviewed by my local independent bookstore! They were very understanding about my limitations and the potential issues with me doing an in-person event in a crowded store, so they used me as a test case for a new process: prerecording an interview on a videoconferencing app and then sharing it on their Facebook page. It worked out very well! Though I am still very slowly working my way out of this months-long relapse, I was able to sit up long enough for a half-hour interview in my own dining room! The interview covers living with chronic illness in general and my book, F ..read more
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Weekly Inspiration: Living in the Moment
Living With ME/CFS
by
1M ago
Chronic illness is filled with challenges, and it can be difficult--or even feel impossible--to be happy in the midst of a life ruled by limits and restrictions. But it is possible, and I wrote a whole book with ideas on how to improve your life with chronic illness, embrace small moments of joy, and find happiness within your limitations. I'm always interested in learning more, though! I came across this TED talk called Want to Be Happier? Stay in the Moment by researcher Matt Killingsworth who studies happiness. It's a short 10-minute talk, but I found it very interesting and thought-provo ..read more
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