Category Archives: making a difference

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

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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

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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

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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

imagining pain away (or, it don’t work that way)

Pain is all about waiting. Waiting for it to stop. Waiting for medication to work. Waiting to see a doctor. Waiting for others to believe you. Waiting for a future cure.

dSavannah note: I started this post – well, I can’t remember when – and I’ve been working on it ever since. Even if it’s not quite “ready”, and I can’t think of a better headline, I’m just gonna publish it… I’m sick of looking at it. And I’d like to cross at least one thing off my massive to-do list. (Which never ever ends. Being a Sick Person is harder work than you’d imagine.) I had a doctor tell me that he was able to have a dental procedure with no novocaine because he imagined he was on a beach with storm clouds out on the horizon. And that he concentrated on the clouds. And thus he had no pain. He didn’t say it explicitly, … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, depression, giving to others, health, illness, insomnia, making a difference, science, shining a light, the dark places | 7 Comments

Important calls to ME patients

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

dSavannah note: Don’t know what’s come over me to be posting again in the same week, but… again, this is important. Please spread it far and wide! Numerous, numerous!¬†Myalgic Encephalomyelitis (ME) patients have become far worse – some now 100% bedbound! – after being forced to do treatments based on bad science, after being told the disease was in their heads (like Jen Brea), that they made it up, that they must not want to get better, and other terrible things. Dr. Sarah Myhill, a UK physician, medical writer and researcher, is working on a complaint to the UK GMC (General Medical Council) about the amazing amount of harm one particular study,¬†PACE, has done to ME patients across the globe. PACE has now been discredited, … Continue reading

Posted in advocacy, chronicillness, giving to others, hard work, health, illness, making a difference, perseverance, shining a light, the dark places | Leave a comment

what is unrest?

dSavannah note: I started this post eons ago, but my brain just hasn’t functioned enough to finish it. So, this one may be more disjointed than usual. And I’ve taken off the bits I can’t figure out how to write properly, and will (eventually, maybe) put them in another post. If I wait until I can express myself the way I want, this post will never get published. And this is too important to wait. A bit ago (part of my illnesses is that time runs together and I have no real concept of it anymore), I wrote about Lady Gaga’s documentary, and included her tweet that said she hoped the film it would raise awareness for fibromyalgia and other painful, invisible illnesses. As I … Continue reading

Posted in #dSavannahDefects, community, giving to others, hard work, health, illness, inspiration, joy, learning, making a difference, perseverance, shining a light, the dark places | 2 Comments

Me too

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dSavannah note: Trigger Warning: sexual harassment, assault, abuse. These words are in response to the stories that broke very recently regarding a studio head and numerous women who claim he sexually harassed and/or abused them. I will not speak his name. But I honor all of the women for coming forward and speaking out. I’m almost afraid of posting this, but with #MeToo trending right now, I am setting aside my innate fear, and publishing what I felt compelled to write last night (in the middle of the night. Instead of sleeping. The voices in my head wouldn’t shut up until I did). I am adding my voice to the cacophony, in the hopes things might change. #MeToo I deluded myself for years that I’d … Continue reading

Posted in abuse, depression, evil, hell, history, illness, making a difference, shining a light, the dark places, violence | 6 Comments