By wendy, on November 26th, 2011%
 Image by librarygrrrl via Flickr By Wendy Burnett
Day 26 – The prompt for today’s Health Activist Writer’s Month Challenge Prompts (#HAWMC) is: “I still remember… Free write a post that starts with the line “I still remember…””
I decided that since this one is so general, I’d narrow things down a bit to keep it relevant to chronic illness. Since I mostly focus on my fibromyalgia, or chronic illness and chronic pain in general, I thought I’d put the focus on one of my other issues this time, so this post is going to focus on my migraines.
I still remember . . . the worst migraine I ever had. It’s something I’ll probably never forget. (My hubby probably won’t either, it scared the shit out of him.) I woke up at my usual time and called in to work to remind my boss that I had a doctor’s appointment that day. My head was aching a bit and I felt kind of sick, but I went through my usual routine of showering and washing my hair anyway, feeling worse and worse as I did.
By the time I got done, I felt bad enough to lay down until time to dress, so I curled up with my sleep mask, until suddenly I was violently nauseous. I barely made it to the bathroom before I lost it (thank goodness there was a throw rug I could just roll up to toss into the washer later,) and I was in there so long, making such awful noises, that hubby actually came to check on me.
It got worse from there, because I’m a stubborn bitch, and was determined I wasn’t going to miss an appointment with the rheumatologist that was always booked solid for 6 months ahead.
Hubby had to help me dress, with several interruptions to run worship the porcelain goddess, and eventually we emptied a small trashcan that I could just carry around with me. By this time, my head felt like it was going to explode, even with all the shades drawn and the lights off I could barely stand to open my eyes, and every time hubby whispered a question I nearly screamed from the pain.
Needless to say, the 45 minute drive to the doctor’s office, hugging my trashcan all the way, was a nightmare for both of us. Every bump in the road felt like someone was jabbing a railroad spike through my head, every time I had to open my eyes the light felt like razor blades slicing through my eyeballs, and every sound was like sharp knives inserted into my brain. Poor hubby wasn’t that much better off, either. He has a weak stomach, so every time I heaved, he gagged and choked.
I must admit though, it’s the fastest I’ve ever been taken to the back . . . the second time they had to rush to unlock the door so I could get to the bathroom before I shared my technicolor yawns with everyone in the waiting room, they stuck me in an exam room. I guess they wanted to get me seen and out of there before they had to clean up after me, because the nurse went ahead and started the intake stuff, mostly while I was hanging over their trashcan.
By that point, I couldn’t stop heaving, and within 5 minutes the nurse had rushed out the door and was back with a needle full of something. She kept waiting for the heaves to stop long enough for her to give me the shot, but it just wasn’t happening, so finally she had to poke me while I had my head stuck in the trashcan. (I have NEVER been so glad to be jabbed with a needle in all my life. LOL)
I don’t know what was in that syringe, but it was some damn good stuff. It was only about a minute before the vomiting stopped, and by the time I rinsed my mouth out I was so groggy that hubby had to pick me up and put me on the exam table (I don’t actually remember that part, the next thing I remember is waking up about 2 hours later.) Hubby said later that the nurse had been in there checking on me about every 15 minutes; and as soon as they found out I was awake the doctor came in, we finished the appointment, and I was GONE. (With scripts for Phenergan, Maxalt, and some narcotic pain-reliever in addition to my usual double handful of stuff.)
I’ve had other bad migraines, including ones that lasted for days of wishing someone would chop my head off for me, and others where I threw up several times. I’ve had lots of migraines where I wished I could just die and get it over with, but that’s the only one that ever made me wonder if it was actually possible to die of a migraine.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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By wendy, on November 26th, 2011%
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, on November 26th, 2011%
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? »
By wendy, on November 24th, 2011%
 Ed Schipul via Flickr By Wendy Burnett
Day 13 – The Health Activist Writer’s Month Challenge Prompts (#HAWMC) for today is “Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!” When I opened my book, the word I got was “acceptance,” so here goes.
The first step toward acceptance of a chronic illness is admitting that I’m powerless to make that illness go away, or to force my life back to the way it used to be. If I deny that I’m ill, or refuse to admit and adjust to my new limitations, I eliminate possibilities from my life.
This doesn’t mean that I’m powerless to make my life with illness better, or that I have to give up on being happy. Once I’ve admitted I can’t make it go away, and that my life is different; I can look for ways to reduce symptoms and find new ways to do the things I don’t want to give up.
Denial is a “stopper” though. Continue reading Accepting Chronic Illness – It’s NOT “Giving Up” »
By wendy, on November 23rd, 2011%
 by Andrea Kirkby By Wendy Burnett
Day 23: The Health Activist Writer’s Month Challenge Prompt (#HAWMC) for today is: “Health Activist Choice. Write about whatever you want!” I like this. Not the subject that I’ve chosen, but the fact that I get to choose.
A friend wrote a post recently about someone who is being denied life-saving surgery because of the expense, and it made me think about the subject of “death panels” that we heard so much about during the original healthcare reform debates.
I think that what most people were missing in that whole controversy is that we’ve had the equivalent of “death panels” for years. Of course, they aren’t called that, if they were, people would be having a fit about them; but they’re there nonetheless. (And they have absolutely NOTHING to do with President Obama’s healthcare reform.)
Every insurance company (including Medicare and Medicaid) has one, usually called something innocuous, like a “treatment review board.” Hospitals have them too, to decide which patients are “appropriate candidates” for transplants or other procedures that can’t be performed for every patient that needs them. They aren’t CALLED death panels, but that’s what they are. What it all boils down to is a committee deciding who lives and who dies.
In an ideal world, everyone who needs a life-saving treatment would get it, but we don’t live in an ideal world. We live in a world with limited resources, and a profit-driven society that is controlled by people, institutions, and corporations that care only about making more and more money.
Because of this “profit is everything” mindset, cost is one of the main factors that play into the decisions of these review boards (and is frequently the only thing that actually counts, especially in the for-profit insurance industry.) People die every year because an insurance company wouldn’t pay for a treatment. Even though there is an appeals process in place, by the time a treatment is finally approved (IF it is approved,) the patient may have died or no longer be a good candidate because of the delay.
Medicare and Medicaid aren’t any better, either. Even though neither program is set up to make a profit, their resources are extremely limited. With the current lack of jobs that pay a living wage, even more people are being forced to fall back on government programs for healthcare, straining those resources even more. Throw in Congressional attempts to cut funding for both programs, and the situation becomes even more desperate, leaving even more people to die.
There is a solution, but it’s not likely to happen. The solution is to make people more important than profit margins and six figure bonuses for CEOs. It’s making people more important than cutting costs by cutting hours, reducing benefits and wages, and laying off employees or moving production to countries where you can pay 25 cents an hour. It’s making insurance a non-profit industry, where decisions are based on how likely a treatment is to work, not on how much it will cut into the company’s profits or the committee’s bonus package. It’s also eliminating tax loopholes that allow companies to make billions in profit while paying nothing in taxes, reducing military spending (we spend about 33% more than the next 9 highest spending countries in the world COMBINED) and making congress live with the same healthcare options as the rest of us.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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Source for the military spending comment: http://blog.heritage.org/2010/04/05/how-does-u-s-defense-spending-compare-with-other-countries/
By wendy, on November 22nd, 2011%
 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, on November 19th, 2011%
 Pain Flares Image via Wikipedia
By Wendy Burnett
Day 10 – The Health Activist Writer’s Month Challenge Prompt (#HAWMC) for today: “The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?”
The face of online activism changes constantly, with new causes and people appearing and disappearing like the flicker of lightning bugs on a warm summer evening. I think that health activism is even more fluid, because many of us became activists because of our own heath issues, and when those issues flare we sometimes have to take a break to deal with them.
I actually haven’t been able to write for 10 days or so because of a major flare of my own, caused by a horrible confluence of triggers all happening at the same time. Changeable weather, the two busiest weeks of the month at work, and running out of a couple of the things I use to keep my symptoms under control several days before my check came so I could replace them, all sent my pain levels through the roof. Throw in even higher stress levels than usual and painsomnia keeping me from sleeping more than 5 or 6 hours a night, and I’ve been pretty much screwed for the last couple of weeks. (And let’s not forget the cranky husband who isn’t getting what he needs. He doesn’t complain, but it does make him a lot more irritable.)
Okay, back to the point of this whole evolution, how fluid health activism can be. People appear, disappear, and reappear on a regular basis because of these personal issues; unlike activists that focus on other areas, who (usually) don’t have to deal with random flares of illnesses that can put them in bed for days.
Although it makes it more difficult to plan, I think having an illness is actually a big advantage for a health activist. (Don’t shoot me yet, this is actually going to make sense . . .) Continue reading Online Activism – Learning, Growing, & Evolving »
By wendy, on November 14th, 2011%
By Wendy Burnett
Day 9 – Oh dear, the Health Activist Writer’s Month Challenge Prompt (#HAWMC) is “My personal brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess? It’s ok to toot your own horn today – you have full permission to indulge. And don’t hold back.”
This is actually the hardest thing for me to do, as it is for most of us, I think. I can talk for hours about all the things I do “wrong” or that I need to change; but coming up with “tooting my own horn” material? Now THAT’S hard. (But then, I can also go on for hours about all the things I think I’m not very good at, that other people seem to think I do well, so there ya go.)
I guess, when you boil it all down to the essentials, what I really advocate more than anything else is taking control of (and responsibility for) your health. Whether that control involves being more proactive when dealing with your healthcare providers and making your own treatment decisions, refusing to participate in activities that make you sicker, Continue reading Personal Brand? Who, Me? »
By wendy, on November 9th, 2011%
 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 »
By wendy, on November 7th, 2011%
 Image by ParkerSav via Flickr
By Wendy Burnett
The Health Activist Writer’s Month Challenge (#HAWMC) continues with the day 7 prompt: “Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.”
Mondays for me come more than once a week. Actually, I have a “Monday” anywhere from 3 to 6 days a week, because every day I have to go to work at the “awful place” is Monday.
If you haven’t already figured it out, I hate my job. I would literally prefer that someone shoot me than have to go into that place, but I’ve missed a grand total of one day in the last 18 months. I don’t have a choice, I have to work, or we don’t eat . . .
I work retail, part-time, because retail stores won’t hire full-time workers any more (and I couldn’t survive working full-time at the awful place anyway.) I spend my evenings standing on my feet slicing meat in a deli for anywhere from 4 to 8 hours at a stretch (usually after walking about a half mile to get there,) then walk home. 
I actually don’t mind waiting on customers and doing the cleaning when I close. Honestly, on the nights I actually have time to get all the stuff I’m supposed to do done, I enjoy the job. My customers are mostly nice, the regulars will come by and just kind of “hang out” for a few if I’m not busy; and the people I work with are pretty cool, too. Even my department manager is a sweetheart, and does all he can to not give me a schedule I can’t handle.
The issue is corporate, as usual. They demand more work than any THREE people could do in the amount of time they give us to do it in, then raise hell if it doesn’t get done. (I swear, I think it must be a requirement to get a lobotomy to be promoted to corporate. If it wasn’t, those people would have to know it’s not physically possible for one person to do what they expect.)
Let me give you an example. We’re allowed one person on duty at a time, and are expected to put out stock, wait on customers, make party trays, slice meat for the sub sandwiches another part of the department makes (on busy days, we go through about 40 pounds of ham and 60+ pounds of turkey, which all has to be sliced and weighed out into individual half-pound packets,) help out in bakery and making prepared food, put away deliveries and rotate stock, mark down things that are approaching the last day of sale, scan out outdated food, keep everything cleaned, set up new displays and reset all the stock every time they decide to move things around, and make sure we always have samples out.
We’re open 13 hours a day, and we’re allowed a total of 13 hours a day labor, so they expect us to also do all of the “closing” cleaning while we’re actually open. Now I don’t know about you, but I haven’t figured out how to be in two different places at the same time. Continue reading Moody Mondays – The Worst of It . . . »
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