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Every once in a while you just have to VENT your frustration. Exitrix Jenni - and occasionally, other folks - cut loose on sources of frustration.
Just a quick question for y'all, sick America. Why do you think it's so freakin' hard for us to dispose of unused/unwanted medications? The Drug Enforcement Agency (DEA) Office of Diversion Control is sponsoring its Drug Take-Back Day for this Saturday, April 27, from 10am to 2pm. Really, y'all? Four hours?
Posted: 4/24/2013 in Venting
When my pal Kerri posted A Big Ol' Glass of... the other day, I almost snarfed my coffee. Kerri and I chat a lot about misperceptions and misconceptions about chronic illness, and I've been mortified to hear some of the comments people make to her about diabetes.
So I couldn't help but respond to her piece with one of my own. Here's my short list of shit people say to me about fibromyalgia, in no particular order. It's all real. And then my response. Which is the same as Kerri's.
Posted: 4/22/2013 in Venting
People often tell me that I don’t "look" like someone with rheumatoid arthritis. This frustrates me, just as it does when they tell me my son with autism "seems fine." What exactly should someone with rheumatoid arthritis look like, I wonder? Dierdre Smith writes about the little things that bother her about RA...and the big thing that makes it all worthwhile.
Someone I know has just—finally—received a diagnosis of rheumatoid arthritis. When she told me what happened in the appointment, she mentioned her relief that she hadn't lost her mind or made it all up. This despite having spent months experiencing obvious physical symptoms that something was Very Wrong indeed. I'm pretty sure most of you are nodding in recognition, having been in that place of thinking you'd lost your mind.
That's when I started wondering why it is that we doubt ourselves so much. And I think I’ve found a few reasons.
While I was talking in hushed tones with my Mum about how beautifully dressed some of the girls were, it turned out some of those beautifully dressed girls were talking in hushed tones about me too. Carly Findlay talks about life with a skin condition and why people should keep their comments to themselves. (This is one of Editrix Jenni's fave articles in a long time!)
I've been disabled by chronic fatigue syndrome and multiple chemical sensitivity since 1995. However, when I became infected with Lyme disease and two other tick-borne diseases in 2007, I developed several new symptoms.
One of the strangest and most difficult has been intermittent vocal cord apraxia, which means that sometimes I can't make voluntary sounds, most notably speech.
I understand the drastic changes in how I sound can be confusing, especially to new people in my life, but for people who have experienced the vagaries of my communication issues for years? In those cases, I want to scream, "Shut up about my voice! Just ignore it and treat me like a human, not a symptom! Stop guessing what it 'means'!"
Posted: 10/12/2011 in Venting
This morning, I popped over to my fave local coffee shop for an iced coffee and a pastry or two. To my surprise, they were offering new gluten-free cookies, so I asked to try one. Then I noticed the server handled them incorrectly: They were stored in the same basket as the other cookies, and he used the same tongs to pick them up as the other pastries.
I had a quick chat the the server about it, and then was openly mocked by another patron. WTF? I don't know if I handled it well. Read on to see what happened, and give me suggestions for what I might have done differently—and what I may do next time. Thanks!
Posted: 7/3/2011 in Venting
It's National Fibromyalgia Awareness Day, and this morning my close pal Dee reminded me of the fact that some people still embrace the "controversy" surrounding fibromyalgia.
Posted: 5/12/2011 in Venting
It's the 19th day of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, and today it's our choice to write about anything we want. Here's the deal: I just don't have time to be a sick chick today.
Here's a list of the things I'm thinking about and working on today, or at least a partial list:
Posted: 4/19/2011 in Venting
Day 14 of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, offers up another damn poetry prompt. If you've been following along all month, you KNOW I can't stand to write poetry. Write a 5-10 line poem in which each line is lie or misconception about your condition, they ask us. Well, OK. But I'm not promising greatness.
Posted: 4/14/2011 in Venting
It's 11 days into the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, and it's time to edit the Wikipedia page for my condition, fibromyalgia. (Well, OK, admittedly...I'm behind schedule. I've been flaring up so I had to take a couple days off, and today I'm playing catch-up. Just go with it!)
The official Wikipedia page for fibromyalgia isn't bad, actually. But there's a whole paragraph at the bottom called "Controversies" that includes this sentence: "Many members of the medical community do not consider fibromyalgia a disease because of a lack of abnormalities on physical examination, and the absence of objective diagnostic tests." I would add a paragraph after this section called: Indisputable Realities.
Posted: 4/11/2011 in Venting
It's day four of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC), in which they offer a blog prompt per day for a month. Organizers gave us this challenge today: Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it.
What did I find that most upset me? A bunch of internet marketers—bottom-feeders, in my opinion—trying to make money off sick folks by selling them snake oil, in the form of books promising them cures for fibromyalgia.
Posted: 4/4/2011 in Venting
Colleen has bionic legs and a sassy attitude, and she's not going to take any crap off of anyone. If you've ever wanted to tell someone off for not giving up the handicapped seat on the bus, well, Colleen is going to show you how it's done. Starting with saying, "bite my electric ass!"
Well, it could be worse, you could be hit by a bus. Katherine has a plan for an alternate breast cancer walk that involves lots and lots of big pink buses...hmm...
Can I be completely honest with you? I can? Good.
I wish you could make my pain go away.
I had a major revelation today, poolside, sun on my back, my headphones playing a favorite tune: I have lived much of my life according to someone else's rules. And I'm sick to death of living like that. But I'm making a pledge to myself right now, and you're my witness: I'm making a big change.
I've been a reporter for 20 years. I've probably interviewed at least 400 people, maybe 500, possibly many more; I've been known to write 1,000-word pieces for which I interviewed more than 20 people, and I've written countless pieces.
Never more in my life have I understood what it feels like to be interviewed for a piece and then not be quoted.
Posted: 9/1/2009 in Venting
The fibromyalgia community has fought for years to be taken seriously. And in a stupid twist that could only come from insurance companies, at least one woman with fibro IS being taken seriously—in the form of a rejection letter. Really? With all the advances in treatment, this is where we are today? Read on to hear what Editrix Jenni has to say about being turned down, and chime in with your own thoughts.
Posted: 10/3/2008 in Venting
Apparently I touched a nerve the other day with my piece on wishing I didn't care so much about what others think. Turns out I'm not the only Babe who spends too much time worrying about what others think think of me. In fact, besides the get over it piece, this one brought out tons of reader comments. So many, in fact, that I thought I'd share them with you. Sometimes it just feels good to commiserate.
I want to live my life and not imagine what other people are thinking of me. If I released all that wasted thought, I could do so much more. I could cancel dinner plans when I'm feeling fatigued and not spend time I should be relaxing thinking that my friends feel disappointed. I could wear sweatpants when I don't have the energy to pick out a cute outfit, instead of trying on a bunch of things when I could be getting my errands finished quickly and then relaxing. I could be moving on from an awkward conversation and relaxing instead of replaying it over and over in my mind. Do you see a trend here? For a Babe with anxiety and fibromyalgia, I sure spend a lot of time thinking about meaningless crap and using up all my valuable time and energy.
If you have fibromyalgia, you've probably read Alex Berenson's article on fibromyalgia, which appeared in the New York Times on January 14, 2008. If you're like me, it made you mad. Real mad. Here's my unpublished letter to the editor, plus responses from Paula Kamen, Lynne Matallana, and others. Join the fight to be heard!
Posted: 1/20/2008 in Venting
From Editrix Jenni: Let's pretend it's 2009, and our next prez has just been sworn in. Here's the letter I will write. Will you write one, too?
Posted: 1/13/2008 in Venting
Regular readers of the site know that ChronicBabe is not all about me. Yes, I created (and run) the site. Yes, I write personal stories to share my experiences as a ChronicBabe. But it's not a conventional blog, focusing on just me me me. It's more about sharing ideas to help YOU, dear readers, and building a collective of many voices.
But this recovery period I've been in since our house was nearly destroyed in THE STORM in August has just about had me whipped, and I haven't felt the kind of energy I usually do, the energy that feeds me helpful ideas to share with you all. I've been drained.
So tonight, I decided to write to you about how living through a trauma like this is SO MUCH like living with chronic illness, so much like coping with a diagnosis and dealing with the aftermath. I think that if I get some of this off my chest, I'll be clear and ready to write productively again for you. And I want that very, very badly right now. So here goes...my laundry list.*
*P.S. For evidence that I am not always so negative, please see the rest of this site. :)
Is it possible to re-claim a word that has negative connotations and make it our own, turn it into something positive? We think so. Jenni Prokopy wrote this article for Young People For (she's been a guest blogger there during the month of May, so check out some of her other posts at the site!), and they've given us permission to reprint a slightly modified version of it here.
I've written about this before. There's a very simple question people should ask before they touch you in any way: "May I touch you?" It's that easy. In my case, the answer usually is no. (Of course, we make allowances for family and love interests and such.) Unfortunately, some people just don't get it. And for those of us who seem to have a "please, go ahead and grope me awkwardly" sign on our backs, I'm offering another reminder of how to respond when unwanted touch happens.
Progress is not linear. I've heard that at least a half dozen times from various health care professionals, but I'm always shocked when the truth of that simple statement is played out in my life.
Posted: 9/18/2006 in Venting
When we wrote recently about talking to naysayers, we had no idea how strongly it would impact our readers. We were flooded with e-mails! Clearly, learning how to respond to negative people is a hot issue for ChronicBabes. We've gathered a collection of responses, to give you some ideas to use in your own life. You may not agree with everyone's perspective but they are worth considering.
What happens when you encounter a naysayer, someone who doubts the validity of who you are or what you do - or even asks why you can't just "fix" your illness and "get on with your life"? Do you take their opinions personally and argue your point, or do you give them up as a lost cause? Editrix Jenni Prokopy encountered a serious naysayer this weekend and decided she needs a new plan for dealing with negative folks.
Sometimes, no matter what anyone says or what's going on, you just need to yell. You need to scream, you need to cry, you need to howl. Because sometimes, being a ChronicBabe sucks. Now, I know this is not what you're used to hearing from me. It's not a sentiment I express often. But I have to just throw this out there: every once in a while, no matter how good you are at managing your chronic, something is going to happen that is just a little too much.
Posted: 3/28/2006 in Venting
Yup. He said, in regard to my pain, "get over it." Let's call this person Fred. Fred has never been all that understanding of my chronic pain issues. Oh, it's not that he can't relate -- he has chronic issues of his own, plenty. He just takes a wildly divergent approach to managing them. Fred's always tried his best to offer sage advice, and I know that he believes he's comforting me when he says certain things. But so often, he misses the mark. I've tried for years to make him understand how it makes me feel, tried to explain my situation to him in a way that would provide a new perspective. I want Fred to get it. I want him to know that I'm no wimp, that I'm not lazy -- that I am doing everything I can do to take care of myself in a healthy, balanced way. All my other pals seem to get it, but not Fred.
The answer today is: no, you may not. But unfortunately, you probably won't bother asking anyway. Sounds like a bad date, right? Wrong. This is a regular occurence for me. People touch me. People I don't know at all, and people I've known forever. In public places, in private gatherings. They just feel the need to touch me without provocation. If they would just ask that simple question, so many negative experiences could be averted.
The National Women's Health Network announced to news subscribers today that the Food and Drug Adminstration has told Mentor Corporation that its silicone gel breast implant is "approvable" -- meaning that they could soon be allowed back into the market. Wow. We at ChronicBabe can't believe ladies are still considering these, with all the anecdotal evidence pointing to the negative impact they can have on health.
From the NWHN announcement: "The National Women's Health Network opposed approval of Mentor's breast implants because the company did not provide enough data to show that it would be safe for a woman to use them over the many years that the breast implants will remain inside her body. In fact, the FDA's own scientists who reviewed the application concluded that the company had not adequately answered the safety questions that the agency had asked it to address."
Read the FDA announcement here.
Posted: 7/29/2005 in Venting
Except for a few of them. I luv Bust and Bitch, and Venus is rad, and Ms. has it nice moments. But seriously, y'all, why does anyone spend any dough on these rags?
Posted: 7/23/2005 in Venting
So here I am, venting. Just getting started. I wasn't sure about including a personal blog on Chronicbabe.com, but the arrival of the damn Bliss catalog made the decision for me.
Posted: 6/7/2005 in Venting
Articles that use Venting as a secondary category:
Editrix Jenni got screamed at for using an accessible door by someone in a wheelchair. She reacted strongly. Was she right? How do we deal with scenarios like this? Chime in!
That woman? That's me. Not some hypothetical. Tina Beychok takes on Ron Paul, Wolf Blitzer, and the rest of the folks who want to keep ChronicBabes from being insured.
"I really admire the way you manage everything so well."
I've heard that kind of thing so many times over the years. Ok, I admit that it's usually coming from my mother, but I do hear it (maybe a bit toned down) coming from others, too. It's an awkward thing. I appreciate that they are aware, to some extent, of what I'm dealing with, but they make these comments like I'm some sort of superhero. While I'd love to be able to fly, and invisibility would be great, I definitely don't want superhero status just because I make it through each day with a bunch of illnesses.
Chronic pain impacts 116 million Americans, costing us somewhere in the neighborhood of $600 billion a year. That's more people than those who have cancer, diabetes and heart disease combined, according to the New York Times.
This news comes to us from a new report released by the National Academy of Sciences, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. (You can download and read it for free by creating a login.) I hope everyone reading this—and anyone who knows someone in pain—will at least read the executive summary, because this is some incredibly serious and incredibly validating news.
People can be idiots. They just have no clue what we ChronicBabes go through when we live with chronic illness and invisible (or even visible) disibility. Some folks are well-meaning but ignorant, and I can give those folks some leeway; they often see the error of their ways if you explain your situation, and go on to be awesomely understanding. But there are other folks who are just plain blind to the experience of others. So for this carnival, we offer up a few examples of their idiotic comments and resulting ridiculous situations, and some snappy comebacks (and a few thoughtful analyses thrown in for good measure).
Yup, Crud. With a capital C. Mega-cruddy. Crap-a-doodle. Yucky. So I'm taking a day off of work. That's right, no work. No work emails, no work phone calls, no filing, no sending of invoices. No writing about concrete. But I am taking a short break from the couch and bad daytime TV to remind you that there will always be days when you just feel like crud and there's no getting around it - even the busiest, most well-balanced Babes need to take a day off. Here's how I'm taking care of myself today.
I am so pissed at the Gap. Used to be, a girl with a booty could buy jeans there, jeans that would make her heart-shaped badonkadonk look superfly. But for the past few years, all their jeans have seemed engineered for stick figures only.
How come when I go on vacation, my chronic has to come with me? Wah. Wannnnnhhh. Venting. Whining. Wannhh.
Someone I'm very close to (let's call her Betty) recently said some things that really hurt me to the core, particularly regarding how I handle my Chronic. After many, many years of putting up with Betty's not-so-subtle digs, I decided that it's time for some distance. It's a tough decision, but one I had to make in order to take good care of myself.