#MEAwareness: Guest Post on Life with ME

MEAction

dSavannah note: You may have noticed I haven’t published anything since May 12, #MEAwareness / #MillionsMissing Day. All of that advocacy wore me slap out (and I don’t think I’ve recovered yet). A friend in one of my MEcfs support groups, Jonathan, took almost two months to write this to share with his family and friends to educate them on his reality. I asked if I could publish it on my blog, and he said yes. What you are reading is exactly as he wrote it (so any typos are his, not mine for once. ha!). Dear friends and family, This is a message from Jonathan. The impetus for this message is that May was ME/CFS awareness month, but I also wanted to update you on what … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, friends, giving to others, hard work, health, illness, learning, making a difference, the dark places | 2 Comments

#MEcfs Awareness – and here’s what I’m missing

I

So, I’ve written about my chronic illnesses a lot. I even spent the entire last #AtoZChallenge (2016) writing about it, under the theme “dSavannah Defects” (aka things that are wrong with me), a category I’ve continued to use because, well, I like the name. And I’ve spent the past week frantically tweeting and posting a BUNCH of articles & whatnot this week for #MEAwareness Month, and for the #MillionsMissing events that will be held today, this Saturday, May 12. (And a HUGE THANK YOU to everyone who has commented, liked, shared, messaged me, donated, and in some way encouraged me in this effort.) But… I may not have spelled out for you exactly, in all its vulnerable detail, how it effects me (or is “affects”? … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, depression, disability, giving to others, hard work, illness, insomnia, learning, making a difference, perseverance, shining a light, the dark places | 4 Comments

#MEAwareness: What an MEcfs Crash looks like

millionsmissing

On November 30, 2017, my husband took me to a Continuing Education event, hosted by the CDC and #MEAction, to view the documentary Unrest, an unflinching, real, true, up-close-and-personal look at chronic illness, specifically myalgic encephalomyelitis, commonly (and erroneously) (and horribly) known as chronic fatigue syndrome (MEcfs). A disease I suffer daily. The filmmaker, Jennifer Brea, was in attendance (who I was too exhausted to meet), as were members of the Georgia Chapter of MEAction (on Facebook, so you’ll need an account), along with Dr. Elizabeth Unger and Dr. Nancy Klimas (sorry I’m too tired to get links, but they are Very Important People and Advocates for MEcfs). Although I wrote copious notes from the event to write a blog post, I have been unable … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, giving to others, health, illness, making a difference, sci-fi, shining a light, the dark places | Leave a comment

#MEAwareness: Let’s talk about funding

A global day of action for ME patients to share their stories. More on their site.

dSavannah note: If you follow me at all on social media, you’ll see that I am frantically tweeting and posting a BUNCH of articles & whatnot this week for #MEAwareness Month, and for the #MillionsMissing events that will be held on this Saturday, May 12. Because, as I said in my last blog post (and my first post in two months), it’s important. Not just for me, but for everyone else who suffers from this horrible disease. (Please also note, I have done a bunch of advocacy already today, and I am very very tired. My eyes are burning. My back and wrists and neck and arms are throbbing, and the rest of me is not in much better shape, pain-wise. My brain is sputtering … Continue reading

Posted in #dSavannahDefects, abuse, advocacy, author, chronicillness, community, disability, giving to others, health, illness, making a difference, shining a light, the dark places | 2 Comments

It’s #MEcfs Awareness Month – and please act!

millionsmissing

May is Awareness Month for a lot of illnesses, such as Amyotrophic lateral sclerosis (ALS) / Lou Gehrig’s disease, Lupus, and Mental Health. Last month was Ankylosing Spondylitis (AS) Awareness Month, which Charis Hill wrote about extensively. (And I never managed to. Sorry.) But this month is awareness for my primary illness, Myalgic Encephalomyelitis (ME), also known by the terrible moniker chronic fatigue syndrome. And May 12th specifically is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) (per the May 12th International Awareness Day website), and International ME/CFS and Fibromyalgia Awareness Day. (dSavannah note: my brain does NOT want to work today {on May 5, which is when I originally started this post}. Writing this is like trying to sludge through the grimiest, stickiest … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, family, giving to others, hard work, health, illness, insomnia, learning, making a difference, mental illness, perseverance, shining a light, the dark places | 6 Comments

Let’s talk about disability insurance

disabilities_look-like

This is a hard topic for me to write about, but: it’s important. And it also fits in with my mission to Shine A Light Into the Dark Places, the stigmatized places, the places no one wants to look at or talk about. And one of those places is disability, and specifically, disability insurance. I see sooo soo many people on twitter and other social media platforms crowdfunding things like – fish oil for their kid, or an audible membership, or a wheelchair, or funds toward a new apartment. Look under the hashtag #DisabilityWishlists, and get ready to cry at all the things people need. And if you have any money to spare, which trust me, unless you too are disabled, you actually do, pick … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, friends, giving to others, hard work, health, illness, inspiration, learning, making a difference, perseverance, shining a light, the dark places | Leave a comment

there’s always hope

IMG_E8352

I’m starting this post at 5am. I can’t sleep because I’m in a lot of pain. I keep getting out of bed to ice the most troublesome areas – my neck, my lower back, my shoulders, and most especially that bit of my back that is just below my left arm and where a bunch of muscles connect my arm and my shoulders and my neck. I have no idea what that bit of anatomy is called, but it hurts like a very big ~expletive~, and is causing pain across my back and up my neck, my arm to hurt all the way down, and my fingers to go numb and tingly, all at the same time. I don’t have any “extra” pain meds I … Continue reading

Posted in #dSavannahDefects, depression, giving to others, hell, illness, insomnia, making a difference, perseverance, shining a light, the dark places | 4 Comments