Category Archives: in the media

painkillers can’t relieve the pain of painkiller stigma

Painkillers have been all over the news lately. It seems like report after report talks about deaths from overdose, how many teens abuse them, or how they’re over-prescribed. What those articles seem to gloss over (if they bother to acknowledge it at all) is how many people actually do need those painkillers. People are different. People feel pain differently. After all – when doctors us to rate our pain on a scale from 1 to 10, your 10 could be a 2 on my scale. Or it could be a 20 – far beyond my comprehension. Does needing a medication make us inherently drug-seeking fiends? I think not.

People don’t like to acknowledge the ill. It’s like it goes against nature, and society wants nothing to do with it. Evolutionarily, we’re weak – and only the fittest survive right? But does that really mean that we’re to blame for our illnesses? No, but it does mean that we have to battle with insurance companies to make them believe we need and deserve the coverage we require. We must battle with government agencies for disability coverage – which means that we then have to battle with the people who think that coverage like that supports lazy people who refuse to do a decent day’s work. Suddenly, it becomes a big political issue and the suffering people who sparked it are forgotten by the side of the road.

The idea that ALL ill people who request painkillers are drug-seeking addicts is preposterous. Unfortunately, worries about malpractice suits or ruined professional reputations mean that many doctors are too scared to prescribe painkillers. Which means that suddenly we are even battling with our doctors for the care that we need. I have friends who have been told by their doctors that although the doctors recognize that the patient needs the painkillers, they are unwilling to prescribe them. Doesn’t this sort of defeat the purpose of the entire medical industry?

All of this often leads to issues of people being unwilling to admit that they take them at all. And, so, I must admit that I have also been needing painkillers lately. By lately I mean since last Spring, and I must admit that a blog post about that change has been half-finished since then. I’m somewhat ashamed to admit that even knowing that the stigma is wrong, I still fell prey to its force. Who wants to be judged by friends, family and doctors alike? Who wants to see pity on their faces? Be told that they’re weak? I sure as hell don’t know anyone like that.

People see us as weak. As if by taking the pills, we have given up. We aren’t fighting for what we want. To that I can only say that if you are a person who can survive such excruciating pain 24hours a day without needing pain killers, then all the more power to you. Unfortunately, my body doesn’t work that way. Other people say that we rely to much on medication and not enough on natural methods. I can’t speak for anyone else, but I can say that I meditate, I do yoga, weight training and aerobic exercise. My mother performs reiki and massage for me. It’s just not always enough.

Painkillers are about more than pain. They’re about quality of life. I can’t say that I take the med every single day – or even every single week, but I can say that it makes a tremendous difference when I do take it. Some days, it just isn’t possible to manage without the help, unless I aim to spend my life whimpering in a ball on my bed. Believe me, I don’t. If the only way to prevent that, and to keep some purpose and direction in my life is to take a painkiller sometimes, then I’m ok. Because here’s the rub: it’s not like we want to take the painkillers. It’s not like we say “Oh, hey, let me go talk my doctor into prescribing a painkiller for me. that sounds fun!” We discuss our pain with a doctor because we were miserable and unable to live our lives due to the excruciating pain. Nobody wants to live like that, and so far this is the only way that society has found to help us.

Of course, the one pain the painkillers can’t relieve is the pain caused as a result of the stigma they carry.

4 Comments

Filed under "...said WHAT?", community education, coping, in the media, insensitivity/ignorance, rant

“Love and Other Drugs”

image from wikipedia

I just watched this movie. It’s about a girl who has been diagnosed with early-onset Parkinsons disease, and is learning to deal with the implications of a life of debilitating chronic illness ahead.

She’s only a year older than me in the movie, so that was something that really hit close to home. Granted, she’s dealing with a different illness, but a lot of the underlying adjustment issues are similar. Most notable, in the movie, was the question of relationships and marriage.

Throughout the movie, Maggie is fighting to not only come to terms with her illness but also the implications it has on her life plans. This means figuring out how to deal with the illness and also how to deal with any future romantic relationships. This struck home for me. It’s something that I’ve personally been dealing with a lot lately. (I’m sure my poor friends @fragileannie and @kimbellybull could testify to this, as they are the ones who usually have to listen to me.)

All the symptoms, so many meds at so many times during the day, plus the doctors appointments and lab draws. Then there are the cancellations on previously made social commitments and the major changes to life plans post diagnosis. I mean, I can barely even manage to deal with my illness myself. My parents are clearly still coming to terms with my new life too.

With that in mind, how can I ask someone to sign up to deal with something that I can barely deal with myself? Aren’t relationships hard enough without all these extra burdens? It isn’t easy to watch someone live with pain and suffering. Is it really fair for me to ask someone to put up with all this extra pain?

Of course, being stuck at home doesn’t make it easy to find someone worth dating. As @fragileannie pointed out the other day, what I need is someone who likes to stay home a lot so he won’t be fussed that I need to be home a lot. Too bad both of us being home a lot makes it really hard for us to meet. Heh. The point is, though, I’m not really sure I’m even actively looking anymore. I’m not convinced it’s fair to the other person. I know enough people who struggle with their spouses/life partners/boyfriends/girlfriends/etc acceptance of their illnesses and limitations. That being said, I know enough people with chronic illnesses who do have happy, supportive relationships. So it’s possible. I guess this is something I’m still struggling with myself, but it was really interesting to watch this movie and watch how Maggie dealt with this issue.

5 Comments

Filed under coping, in the media, introspection

Sunday Breakfast Club: Snoop Dogg talks about his daughter Cori having lupus

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

It seems like the celebrity coverage of lupus has been abnormally high these days… first there was the discussion of Michael Jackson’s discoid lupus in the aftermath of his death… then there was all the “does Lady Gaga have lupus?!?!” debating… and now we are hearing from Snoop Dogg about his daughter Cori’s lupus diagnosis.

In the midst of the Lady Gaga business was the discontent about what information was being gleaned from her comments – “is it accurate?” “Is it what we want someone to be saying?” “Well, at least we can use the awareness, right?”

Well, it seems that Snoop Dogg has that whole awareness thing well within his sights. He’s been all over the airwaves raising awareness these days. People ran an article. Then he was interviewed on The View (see YouTube clip). His wife, Shante, has joined Lupus LA.

In the midst of the discussion of Cori’s symptoms and the battle to find the right medication regimen for her (sound familiar, anyone?) … we hear about how Chante thinks they never could have made it through the battle without each other (having receonciled just before the diagnosis) … but this quote hit me hardest:

“That’s what’s making her get better: that we have love in the house.” -Snoop Dogg, on “The View”

Now theories of the best cures abound… and I don’t want this post to turn into a discussion of alternative medicines. So let’s just focus on the love part, shall we?

I know that not everyone has a very understanding family. Still, understanding and supportive are different things. You can be supportive of someone’s needs without understanding why they need those things or what they are experiencing.

For me, a little love goes a long way. Love from my sister and my parents, yes, but also love from my friends (even if they aren’t in the house). I couldn’t manage without it. So here is my question, readers: whose love do YOU rely on?

5 Comments

Filed under breakfast club, community education, in the media

Sunday Breakfast Club: Lady Gaga and the Awareness Issue

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

So the Twitterverse, Bloggerverse, Facebookverse and probably any other major social network are in a frenzy with the news that Lady Gaga has been tested for lupus. Tested, mind you, not diagnosed with. There was an article on CNN which quoted this original article … here is what the Lupus Alliance released in response to the rumors.

I think the Lupus Alliance makes a good point about the issue of what information about lupus ends up being disseminated in such situations. It is definitely a significant problem. However, that isn’t the issue I would to discuss today. Instead I would like to focus on the tone of the chatter.

Obviously, when any major celebrity mentions lupus we are going to get all riled up. We all know that the more awareness there is in the community, the easier our lives will be. Besides, existed support and understanding aside, it’s a major illness that we suffer from, and it would just generally be nice if people knew it. Still, as I read these tweets I started getting a little worried about their implications. I mean, are we so excited that someone famous might be able to get the word out that we have forgotten how trying this illness is?

I, for one, hope Lady Gaga DOESN’T have lupus, regardless of how much awareness she can bring to the disease… and, I’m sure, many authors of said tweets would agree given a chance to explain themselves. It’s not like lupus doesn’t have a set of celebrities attached to it, but nobody on the lines of Lady Gaga. Still, the point that these days celebrities are one of the best ways to get awareness out for a disease is valid. Lou Gehrig for ALS and Michael J Fox for Parkinson’s are prime examples.

All the same, I’m not sure we’re being fair here. I know celebrities have a limited amount of privacy, but does that mean they’ve totally given up their right to it? Is it fair to demand that they release protected medical information in the name of the cause? I mean, I’m not even willing to provide my name out here in the community for fear of repercussions, so I can see why they wouldn’t want the entire world to know.

How can we do this without wishing the disease on anyone in the first place?

How do we balance the need for increased awareness (especially of the level which can only be gained with celebrity help) and still respect their right to privacy?

3 Comments

Filed under breakfast club, in the media

Sunday Breakfast Club: Bones, S5E18, “The Predator in the Pool”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I usually enjoy Bones, but this episode had me all riled up. (Yes, I realize that it was a few episodes ago, but I don’t find much time to keep up with my shows…) The premise of this episode was that a woman killed a self-help guru who promised he could take away pain (and effectively cure her fibromyaligia) when his methods didn’t work. The worst part? She claims her pain [miraculously] disappeared now that she had killed him, thereby justifying her actions. The implication was that her fibromyalgia was cured after she had exacted her revenge/frustration.

Now, to be fair, Bones is not a show that’s known for being incredibly politically correct, they often pick cases based on people who do not live within the realm of society’s norms. Recent episodes included witches and hoarders. Still, this one (quite likely due to my own personal interest in the topic) was particularly offensive and, I thought, in bad taste. Living with an illness that people don’t understand is hard enough without major TV shows portraying it so ridiculously!

While, as far as I know, a complete definition for fibromyalgia is still pending, I think enough is known about it to negate the premise of the show. There was an article about it in the Journal of the American Medical Association (JAMA) as long ago as 1987 – over 20 years ago! Yet fibromyalgia continues to be a misunderstood (or hardly understood) disease.  Sufferers of fibromyalgia, their friends, families, and the doctors who believe them are constantly fighting to convince people that they are truly fighting a painful, debilitating illness not a psychological problem. Now I know that asking for an apology is too much effort for very unlikely return. Still, I wish someone would inform Bones’ viewers of how out of line this ending was.

Nevertheless, my dear readers, here is the question that I put forth this week. What do you think would be an informative way for fibromyalgia to be portrayed by the entertainment industry? I mean, I’m not sure that anyone would make it all the way through a portrayal of the daily aches and pains without getting bored. (Let’s face it – it would be a pretty uneventful show, right? I sure get bored with the tedium of it all.)

Also, if any of you have seen noted other references to fibromyalgia in the entertainment media please let me know. (I’m asking about both accurate or inaccurate – I’m just curious.)

3 Comments

Filed under breakfast club, in the media, insensitivity/ignorance

Sunday Breakfast Club: Grey’s Anatomy, S6E21, “How Insensitive”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

Grey’s Anatomy has been a favorite guilty pleasure of mine since the show first aired, but lately I’ve been getting more and more bored with the show. So when I was told the latest episode was really worth watching, I obeyed but took the comments with a grain of salt. Turns out, my friends know me quite well.  The episode is about a bariatric patient who comes into the hospital, and they worked it around an underlying theme of patient sensitivity. There were some interesting comments made by the patient, his (thin) wife, and the doctors that are caring for him that got me thinking about perceptions…

The patient is always joking about his weight (calling himself a mountain and so on) and the implications it has for his care. Meanwhile, his wife is forever fighting by his side, insisting that he is just like everyone else. I loved the wife character – she was bold and quirky. Totally willing to put people in their place for being obviously inappropriate, rude, nosy and just plain mean: “It’s easy to make jokes about him. You didn’t know him before. You don’t know that inside all that is the man I’ve always known.”  “Joke with him. Make him feel like a person.”

How often do I try to tell people that while I might look different and no longer be able to do things I could before, I am still me somewhere inside a very sick body? I hate when people treat me like an invalid or act like I’m exaggerating how ill I am. This is me… it’s still the me that was in here before… I just don’t have the energy to show you that all the time …

An exchange between 2 doctors:

Dr. Shephard: [after saying they should send the patient a specialist center that’s set up for this type of patient] – instead of “spending our time and resources caring for someone who obviously doesn’t care for himself.”

Chief Webber: He has an illness that he can’t control… he needs help.

I mention this quote, because I think it’s a really key point that many of us have faced. People don’t always think we’re “trying” to get past our illness. They suggest that we pray more or differently, tell us about some remedy or another, or worst of all tell us to “just get past it already, forget and move on already.”

Dr. Karev “selfish […] I’m sorry that we’ve been tiptoeing around you all day trying not to make jokes. But you’re the one that’s gotta stop. Stop calling yourself the fat guy. […] I know what it’s like to have life hand you so much crap that you just wanna sit on the couch and die. But you gotta look at what’s in front of you.  [reminds him that he has a wife that loves him and a baby on the way]”

This is the quote that I really wanted to fixate on. He tells the patient not to joke, but I don’t think moving past this stage into a healthier life should mean that he shouldn’t be able to joke around about his illnesses. Having a chronic illness isn’t an easy place to be, and sometimes you just have to laugh at yourself to get through it because there’s nothing else left to do.  That being said, I think the end of the quote made a point. There are definitely days when I think I just want to be done with it all, and that nothing is worth this… but there is always something in the future that reminds me that there are still things worth living for in this world. For me, it’s my family and the friends I rely on all over the world. And the reminder that I’m working towards a degree I’ve wanted since childhood – a central life goal. A lot has stood in my way, but I’m not going to let this illness stop me from something so near and dear to my heart.

So, readers, what think you? What keeps you going when life has you wanting to sit on the couch and die?

1 Comment

Filed under breakfast club, in the media, insensitivity/ignorance, introspection, shout outs & thank you's