By Wendy Burnett
Do you do everything you can to ease your fibro symptoms, and wonder why you don’t feel better? If you’re being exposed to the following substances, you may be undoing all the good you’re doing with your diet, medications and alternative treatments.
- Aluminum Hydroxide – An adjuvant added to vaccines to increase antibody production, aluminum hydroxide is a neurotoxin that has been connected to Gulf War Syndrome; as well as cognitive dysfunctions and motor neuron disease, which is virtually indistinguishable from classical amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) except for the age of onset. It has also been linked to the destruction of, and damage to, motor neurons; which are responsible for telling your muscles to contract or relax, thus controlling movement; as well as for receiving sensations from the body.
- Aspartame – Aspartame (Nutra-Sweet) has been linked to headaches, including migraine; higher pain levels, cancer, brain tumors, tinnitus (ringing or buzzing sound in the ears,) noise sensitivity; decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision; decreased night vision; pain in one or both eyes; dry eyes; dizziness and unsteadiness; confusion and memory loss; severe drowsiness and sleepiness; Continue reading 8 Things You Didn’t Know Would Make Fibromyalgia Worse »
By Wendy Burnett
Day 24: Today’s Health Activist Writer’s Month Challenge Prompt (#HAWMC) is: “My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?”
FibroFighter's secret weapons
When I first saw this prompt, it freaked me out a little . . . Me, create a mascot? Oh no, I couldn’t do that. After all, I’m not that creative, am I? Well, maybe I am, because the idea kept sort of sloshing about in the mush that is my brain; bumping into all these other ideas about fibro, and coping, and pain. Some of the ideas stuck together, a picture started forming in my head, and suddenly there she was. FibroFighter, the fibromyalgia mascot, waving a hot pad and shouting “I can do it!”
FibroFighter is just as much a superhero as a mascot though. She has to be to do even part of the things that a “normal” (read “not sick”) person does every day while coping with constant pain, exhaustion so deep it feels like it pins her to the bed, and fibrofog that turns her brain to mush.
FibroFighter’s “secret weapons:” Continue reading Introducing . . . FibroFighter! the Fibromyalgia Mascot/Superhero »
By Wendy Burnett
Day 25 – The Health Activist Writer’s Month Challenge Prompt (#HAWMC) for today is: “Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?”
Part one is easy . . . I’ve never been to Hawaii, and I WANT to go (permanently.) Actually, I guess any tropical island would do, I just happen to know that Hawaii has the internet connectivity I need.
Randy Son of Robert via Flickr
I’ve always loved the ocean and beaches, and being on an island would totally surround me with both. Water in all its forms nourishes my soul, relieves my stress, and relaxes my body. I’ve also always been fascinated by the juxtaposition of beauty and danger in volcanoes, and can never resist watching programs about them. In Hawaii, I would have both, along with warmer temperatures (winter is always the worst time of the year for me, with the cold increasing my baseline pain levels.)
I grew up in south Florida, on the coast, and I miss the feel of the salt air, the roar of the surf, and the ocean breezes. Continue reading Never Have I Ever . . . Now How CAN I? »
Image by limevelyn via Flickr
By Wendy Burnett
Day 11 - and the Health Activist Writer’s Month Challenge Prompt (#HAWMC) is: “If it’s not broke, don’t fix it. What is working well in your community, healthcare, blogs, social media, or your work in particular? What do you like about it?”
YAY! I get to do another gratitude post! I know, I know, that prompt doesn’t say anything about gratitude, but what works best in the chronic illness community more than deserves a little gratitude.
There are actually quite a few things that work well (not healthcare, but the rest of it works reasonably well.) What I like the best though, is the community. The vast majority of the people in the chronic illness community are absolutely awesome. Continue reading If It Ain’t Broke, Don’t Fix It »
By Wendy Burnett
Day 8 – The Health Activist Writer’s Month Challenge (#HAWMC) prompt for today is actually “3 Truths and 1 lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us 1 lie. Do you think we will be able to tell the difference?”
I’m not really crazy about this one, and I missed the Saturday post (that I did like) so I’m going to switch them out. (Besides, I’m a crappy liar, and don’t have much chance of coming up with something you’ll believe.)
So the prompt I’m working from is: “5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.”
This is a bit of a tough one for me, since most of the things that have changed my life have not been pleasant to live through, and are not fun to think about. One of the things I’ve learned in my 50+ years is that enjoyable experiences tend not to have lasting effects on my life (and they never last long enough, either.)
The experiences themselves may have been unpleasant, but mostly they’ve had good results (eventually.) I look at the nasty bits of my life as learning experiences because every one of them has taught me something I needed to know, pushed me out of my comfort zone, or both.
I guess the first and most life changing experience that I can remember is my mother “kidnapping” me from my dad’s family when I was 5 years old. Continue reading Life Changers are Always Painful »
Image by bayareabaw via Flickr
By Wendy Burnett
Oh, well, looks like yesterday is going to have to be one of my “get out of post free” days. Between the pain levels and the Vicodin hangover (I don’t take that crap very often, so it can have some odd effects,) I slept until I had to get ready for work. I’ll probably make it up later though, because the prompt is pretty interesting.
The day 6 prompt for The Health Activist Writer’s Month Challenge (#HAWMC) is “If I could do anything as a Health Activist… Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there? Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?”
This is gonna be fun. I’ve been thinking about all the things I’d like to do if I had the money for a WHILE and a lot of it is just going to be writing it all down, so lets get started.
- First, I’d quit my job at the awful place so I could focus on my writing and research.
- I’d set up an actual office/studio space so I’d have somewhere I could do audios, videos, and decent pictures for my writing and get away from the constant interruptions while I’m trying to write.
- I’d start working on that TV show from day 2 of the challenge.
- I’d start the newsletter that’s been waiting for me to be able to afford the autoresponder for it, upgrade my hosting plan to provide more functionality for my site, upgrade my free accounts on places like HootSuite and Timely, get rid of all the annoying affiliate links on my site, and do some advertising.
- I’d do more experimentation and research on alternative treatments, and get certified as both an herbalist and an aromatherapist.
- I’d add resources to the website, like scheduled chats on various topics with someone actually there even if I had to pay them, beginner’s guides for the newly diagnosed, and whatever else we could come up with that would be helpful.
- Finally, I’d hire some other members of the chronic illness community to do things like find useful links and research, contribute content, and do graphics and website upgrades/maintenance. I know that there are thousands of people out of work, but I think that part of my responsibility as an activist is to help our OWN community first, and only go outside for services if I can’t find someone within the community to do what needs done.
I know from experience that with the flexibility to work from home, when symptoms allow, most of us are able to do a lot more than we think is possible. In addition, the opportunity to be productive and contribute something helps immensely with the emotional stresses of being sick all the time. It’s more complicated to have to manage multiple employees who need flexibility, rather than a single employee that can do the whole job; but that single employee has a chance at a traditional job, where the others have no hope of being hired by a company that only cares about getting the job done as cheaply as possible.
Now for part two . . . what CAN I do with the resources I have available? In the next year I can continue to add more content and develop resources for the community. I especially want to add at least one article on how to tell whether a “member” site for various illnesses is a genuine forum for helpful resources or a “shill” site sponsored by someone with something to sell. I can update my “links” pages, and I can go ahead and start the newsletter I want to do without the autoresponder.
In the next five years? I have no idea, other than more of the above. Most everything else requires money, and I have no way of knowing whether the financial situation will change enough to allow me to do any of those things.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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By Wendy Burnett
WEGO Health is having a month long event called “The Health Activist Writer’s Month Challenge” (#HAWMC) through November. It sounded pretty interesting, and I can always use more ideas for posts, so I decided to participate even though I didn’t find out about it until I was getting ready for work yesterday. I’m already a day late with my first post, but I figure what the hell, it’s only one extra post, so here we go . . .
The prompt for the first post is “Titles of my future book. Come up with 5 working titles and a quick book jacket synopsis.” This is actually an easy one for me, since all of these books are in the process of being written, and the synopsis is just the basic premise of each book. I don’t know if they’ll ever be published through a traditional publisher, but they will all be available as both e-books and Kindle editions when I finish them.
Making Your Own Medicine: A Guide to Adding Herbs to Your Treatment Plan - The use of herbs (and other alternative treatments) can improve quality of life and reduce the need for medications, IF they are used safely and appropriately. This guide provides information about how to safely integrate alternative treatments, how-to’s for creating herbal treatments, and resources for finding more information.
Suffering is Optional: My Life with Chronic Illness - Although I have pain and fatigue (and lots of other symptoms,) I don’t suffer from them. They don’t make me miserable, or cause me psychological distress, or make me unhappy. Continue reading Current Projects: Titles of My Future Books »
Image by chadly via Flickr
By Wendy Burnett
When you have a chronic invisible illness, one of the hardest things to deal with is the lack of understanding from your family, friends, and co-workers. “Normals” (those without chronic illnesses) have only had illnesses that last a few days or weeks, then go away; so when they see you on a “good” day, they think you’re “getting better.”
If your friends see you out shopping one day, and then the next day when they ask you to go to lunch, or help with something; and you can’t because the shopping wore you out, they get angry or think you’re “faking.” After all, you were fine yesterday. Continue reading 3 Ways to Explain Your Chronic Illness to Family & Friends »
By Wendy Burnett
Change is difficult for anyone to deal with, but it can be terrifying when you have a chronic illness. There are so many things to be afraid of, so many “what ifs” to overcome, that making a decision becomes almost impossible. All the unknowns are paralyzing, freezing us in place, so we refuse to do anything differently because we’re so afraid.
What if adding a new medication makes me feel worse instead of better? What if my doctor refuses to write my pain prescriptions? Will having lunch with my best friend put me in a flare? Continue reading Coping with Change, Spoonie Style »
Of all the symptoms of fibromyalgia I have to deal with on a daily basis, FibroFog is absolutely the worst for me. I can deal with pain and stiffness, I’ve adjusted to always being exhausted, anxiety and stress are a constant undercurrent, but feeling like I’m losing my mind? THAT one bugs me.
I have to use lists constantly, or I’ll walk out of the house without my head one of these days. (Of course, a list does a lot more good if I can actually find it.) I have to laugh most of the time, because some of the things I forget are just SO ridiculous . . .
Have you ever gotten half way to work and realized you forgot to put on your bra? I have. Funny? Yes. Irritating? Even more so. I probably could have gotten away with it, considering it was in the winter and I was wearing three layers of clothes, but still . . . not appropriate. Besides, try explaining to your male boss that the reason you’re half an hour late is because you walked halfway to work before you realized you’d forgotten your bra and had to go back and put it on. NOT fun. Funny, yes, even hilarious, but definitely not fun. Continue reading FibroFOG – The WORST Symptom Ever? »