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The Ill and the Blameless

When I sat down at the computer this morning, my google reader list was one of the first things I went to look at. As a result, I started my day with this excellent post by @DrSnit over at Dear Thyroid: Chronic Snarkopolist: Blaming the Patient  I suggest everyone go and read that post not only because my response below will make much more sense that way, but also because it’s an excellent piece. I started writing a comment in response, but it got so long that I figured I might as well just write a blog post.

 —

Being told it’s our own fault (either directly or indirectly by way of phrases like “denied using” or “failed treatment” as mentioned in the article) sets us up for the wrong attitude. It makes us scared to get the help we need from doctors or the support we need from family/friends. Who wants to be told over and over again that they are to blame, that they are wrong, that they have failed? By engaging in behaviors that make their patients scared to visit them, let alone be honest about their life (habits, symptoms, pain levels, mood) doctors have already failed their patients before they even start treatment. They have failed to create an environment where we feel safe enough to be honest and destroyed the doctor-patient relationship. Of course, without that information they can never treat us whether it’s treatable or not. I realize that we live in a world where malpractice reins as king over the risks doctors face. How many times have you overheard the phrase “I don’t want to get sued for killing someone?” come out of a doctor’s mouth? Shouldn’t “I don’t want to kill someone.” be the worst that could happen? But I digress.

There are obviously some people who may have ended up with illnesses because of their bad decisions. Ok, fine. Let’s move on shall we? Focusing only on wrongs instead of on how to make things right as best we can moving forward is pointless. Who is that practice benefiting? Certainly not the patient. Certainly not the doctor. Nobody is perfect, but we are doing our best.

Doctors like to hide behind the fact that this is how they were trained to report information. Does that alone make it the right thing to do? I think not, but that’s just me and just me thinking isn’t enough. This is a change that needs to come from the inside. Something that doctors need to start looking at very carefully. Instead of brushing us off as whiny patients who, since we don’t have their level of education on the topic, clearly know less about it than they do. News flash: many times I’ve had doctors prescribe incorrect meds or order incorrect tests. As it turns out, when you have an illness that doctors don’t see every day doctors don’t always remember everything they learned 10-20 years ago in medical school & residency.

I think one of the things that I have found most frustrating about patient blame is that it comes from loved ones too. It isn’t only the doctors that have bought into this denial and blame game. My mother is always crying about how I’m still sick because I’ve accepted that my illnesses are chronic. By agreeing that they’re chronic, she says, I’ve decided I’m never going to get better. According to her, it’s MY fault that I’m not getting better because I don’t want it badly enough.

A friend once informed me that my life as a chronically ill person seemed like a soap opera. “Lifestyles of the Ill and the Blameless” we joked. She couldn’t figure out why there is so much drama going on all the time. Why must I switch doctors, can’t I just insist that they look into a symptom I’m worried about? Why must I switch doctors, can’t I just repeat myself until they listen? Why must I switch doctors, can’t I just put up with a ‘little’ condescension? If I know I’m doing the best I can then why should it matter if the doctor doesn’t think so? Why does it need to be such a big deal?? I told her the only thing I could: because it IS a big deal! It’s a HUGE deal! Blaming the patient for their illness, for the meds not working, for not being a obedient robot is ridiculous. There are some truly FANTASTIC doctors out there who listen to their patients and work with them to create helpful, supportive care plans. They broke away from the mold of traditional patient blame approaches and learned to work with their patients instead – isn’t it time more doctors started to think about doing the same?

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Trick or Treat? The Pranks of Sir Prednisone.

This post was featured in ChronicBabe Blog Carnival #15: Trick or Treat.

 

Yesterday I experienced something new. Not the sort of exciting and new event that you would like to cross of your “bucket list.” Oh no, this was the sort of thing that should be on the list of “embarrassing things that you hope will never happen” to you. Ok, maybe I’m being a little melodramatic. After all, there are many worse things that could happen as the embarrassing stories section of any Cosmo magazine will tell you. (Or, more reliably, probably most people.) So why am I so upset about this particular event? Well, I guess because it is caused by an event that I am so happy about.

There is no end to the frustrations of taking prednisone: increased appetite, osteoporosis, weight gain, moon face, etc, etc, etc. What people often don’t talk about, though, is that prednisone withdrawal is no pretty sight either. To finally get off of a prednisone taper is an exciting event – it’s splendid to be free of it’s side effects. Sir Prednisone, though, is hardly the type to just let you shimmy down the side of his holding tower on your hair like Rapunzel’s prince and scamper off into happy oblivion. Oh no, he makes it brutal. The mood swings are ridiculous – I mean, really, who tears up at the end of NCIS when they get the bad guy? It’s almost comic except that it’s so frustrating. Then let’s add in the debilitating fatigue and the horrible joint pain. My favorite withdrawal symptom, though, is the nausea and vomiting.

Which brings me to my embarrassing moment: forceful, projectile vomiting in a restaurant bathroom. I mean the kind of puking where you don’t even manage to kneel in front of the toilet because a slight bend at the waist and suddenly it begins… and then repeats 5-6x in fast succession. Oh and then I performed that whole routine again when I got home. Except that I had to get out of the shower that time – with the  shampoo still in my hair. That wasn’t my greatest moment. Just in case anyone missed it, I gave a final midnight show. Of course, at that point it was just acid coming up. Beautiful visual isn’t it? To all the empaths out there … are your noses and throats burning yet?? Hey universe, I would like to never do that again, please. Thanks. Curse you, Sir Prednisone. Can’t you just let us go peacefully?

Sunday Breakfast Club: “Where’s the love, y’all?”

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.


A special issue Sunday Breakfast Club entry, one day early, in memory of all those who died on 9/11.


As today is the anniversary of the September 11 (9/11) attacks, I have been giving a lot of thought to how the world has changed since then. In the aftermath of this tragedy, I feel as if the world has become disjointed. Or, perhaps, it’s just that I am more aware of the seams between the world’s puzzle pieces now. Nevertheless, nine years later, we are still very much in mourning not just for the people who wrongfully died that day, but also for the innocence lost. … but what have we learned from this calamity? We have people threatening to burn Korans in a country founded on the beliefs of religious freedoms. … but I digress from a point that I haven’t even made yet: this lack of acceptance may or not have been so pervasive before 9/11, but it surely hasn’t gotten better since then… and it extends far beyond the realm of religion and politics. Many chronic disease sufferers would agree that it seems to be omnipresent in the medical world.

Maybe you remember the “Where is the Love?” song by the Black Eyed Peas and Justin Timberlake that came out a year or two after 9/11. Or maybe you don’t. It was, in contrast to the general merriment-driven attitude of most of their work, a pacifist plea. Debates about political, religious and moral convictions aside, I think their point is valid:

Yo’, whatever happened to the values of humanity

Whatever happened to the fairness in equality

Instead of spreading love we’re spreading animosity

Lack of understanding, leading lives away from unity

(…)

Where’s the love, y’all?

Where is our love for each other? If not love, then why can’t we at least muster up some acceptance and attempts at understanding? Maybe the question in this situation would be more appropriately phrased “Where is the empathy?” or “Why is there so little understanding?” Why are patients with medical histories documenting their years and years of painful existence being turned away as drug-seeking addicts? Why are the doctors who should be taking care to figure out what causes little understood diseases like fibromyalgia instead treating patients like whiny women who are just looking for some attention?

We used to just lock people away when we didn’t understand conditions like depression or bipolar disorder. It seems like an outdated notion, doesn’t it? Now that science has figured out some of the underlying biology, we use counseling and medications to help these people. The thing is, things haven’t changed as much as we like to think they have. Sure, we don’t lock up people with fibromyalgia. Instead we just treat them like societal outcasts. Doctors say the condition doesn’t exist, and without their validation of the disease society rolls its eyes at the people who are suffering.

As the population of people fighting fibromyalgia becomes more vocal and ads for drugs like Lyrica that are aimed at fibromyalgia increase, the topic rises closer to the forefront. We aren’t going to sit back anymore and let our doctors tell us, however indirectly, that we aren’t actually ill. A doctor treating patients with illnesses like fibromyalgia requires both signs (objective, observed by the doctor) and symptoms (subjective, what is experienced by the patient) to properly treat the patient. As in they can’t do it without us. After all, who would they be treating? Fatigue and pain are symptoms – and as far as I know they haven’t figured out how to measure what we perceive without our input. So why are we battling with these people who are supposed to be caring for us? Doctors are supposed to help those in need of medical treatment, but instead we are being blown off. Where is the empathy and understanding in that? Where is the commitment to healing (or at least alleviating suffering) that their profession was founded upon?

9/11 was a horrific tragedy. We are right to be mourning the loss of these people. … but why can’t we remember these people by trying to change the mentality that leads to events like these. A focus on an “us” vs “them” mentality, doesn’t really get us anywhere. I’m not delusional. I’m aware that reaching that kind of understanding on that kind of scale is a remote possibility, but we have to start somewhere. Why can’t that somewhere be in the doctor-patient relationship? As we fight wars overseas, let’s not forget that there are people battling for their lives at home too.


Sometimes a Whine is a Good Thing

There is a lot of chatter that goes on in the Twitterverse in which the many chronic disease sufferers live online. People use it as a forum for different reasons. Some use it to hear from people who are suffering from similar situations – common circumstances, advice, etc. Others take that one step further and look to interact with those people, to make friends and speak with people who can say “I understand” and actually do.

There is, as is understandably the case, a large amount of what some may term “whining” that goes on in such conversations. I beg to differ. These are trying illnesses that we deal with daily. Incessantly. From the time we wake up until the time we fall asleep – well, if we even manage to fall asleep at all, that is. It’s frustrating. It’s exhausting. We post these tweets because they help us get through the day. To function as best we can in the “real” world of people who don’t understand. Which is why we turn to the people who know what we mean when we post those tweets: the people who are posting similar tweets.

Now, as best as I can tell, much of the argument (often expressed by way of the private “direct message” feature) against such tweets is a complaint that we don’t get very far by posting them. Perhaps people think we take too much refuge in these tweets, too much solace in something that might not affect the “real world” interactions we are invariably forced to take part it. Again, I beg to differ. Sometimes venting our frustrations on blogs and twitter keep us from frustrating people in the “real world” with complaints that they don’t understand. It’s not just about their understanding, it’s also about being a burden. Many of us feel a lot of guilt about the constant demands we put on our loved ones: doctors visits, chores we can’t do, money, and so on. Constant whining seems like one more thing for them to bear, and another reason for them to feel bad for us. Or, as is more prone to upset and induce guilt in my case, to worry about us.

Still, I do think that there should be some efforts made to help those in our “real world” lives understand what we are going through. After all, it seems rather self indulgent to go on in a woe is me nobody understands me vein of thought without at least trying to fix that situation. … but that is rather more easily said than done. Some people fail to understand no matter how many times we try to tell them about it. I’m not ashamed to admit that sometimes I just don’t feel that it’s worth depleting my limited energy stores to educate them.

Frankly, I don’t think anyone has a right to tell me that I’m whining too much – or to tell anyone else that. After all, that is the joy of the internet, is it not? We can choose who we want to interact with. Some people support others by joining in the necessary venting of frustrations, others support with reminders of strength and “I’ve got your back” attitude, still others provide jokes, quotes, or anecdotes. At the end of the day, we interact with the people who provide us with the right mixture of those things – and we try to do the same for them. That is the point of these interactions. Sure, sometimes it might be more helpful to remind ourselves of our strength, but a lot of times I just need to vent my frustrations and talk to people who won’t judge me for doing so.

I do the best I can to be supportive and (dare I say it?) inspirational … but I’m just one girl, who is fighting hard to stay afloat in a sea of constant pain, fatigue, and disappointment. I can’t be upbeat all the time, nor should I be forced to be. I have enough stress and pressure and pain and so on to deal with without adding this layer of judgment. Of course, it may well be that those whining about the whining (*cough*) are annoyed by those tweets because they are just having a bad day themselves. So I’m choosing to shrug off these comments and criticisms that I have received. Take the whines for what they are – a necessary interaction for some. Or choose not to interact with those Twitter users. The choice is yours, fellow whiners, the choice is yours.

go for the threading, stay for the insults?

So I went to the salon yesterday. I wanted to get my eyebrows threaded. No big deal. <15 minutes in and out. I was excited. It was the first day in over a month that I had the energy – and the time – to go take care of it. I may not be able to control the weight gain, but at least I can keep up with these little things that keep me from feeling completely un-presentable. I know, I know, I need to get over the weight issues. I’m working on it, I promise.

The salonist (?), however, felt a need to comment not only on the fact that I’d let my eyebrows get unruly, but also on the fact that I should really be taking care of myself better,

“[I mean] look how much weight you’ve gained. A girl your age shouldn’t be your size. You need a good figure to get around in this world […(I tuned her out here as I tried to count backwards from 10)].”

Counting backwards from 10 didn’t work. I was livid. I couldn’t figure out if I should cry or scream at her. Had I a more violent disposition, I probably would have been inclined to slap her. It was just so RUDE! I was well aware of how my eyebrows looked, and that comment was directly related to why I was there. To her, I’m sure it seemed like I couldn’t take a quick 15 minute trip, so OK, fine, make a comment. After all, her money comes from how often people visit right?

Still, there was really no excuse for the weight comment. It was not directly related to any services they provide. Moreover, it was unnecessary. I didn’t come in for a weight consult or a beauty consult of any kind. It’s not like I don’t know that I’ve gained weight, or how our society views fit people versus out-of-shape people, after all. I realize that perhaps it’s my own fault for thinking I could separate the concept of vain beauty in terms of things like eyebrows from body image issues … but she could have kept her opinion to herself, right?

Finally, I let loose with a (tone-controlled) ear-lashing. I informed her in no unclear words that I am, in fact, quite ill and I come here as often as I can work up the energy to do so, but frankly my health is more important than my eyebrows. I told her that she should try being so ill that she can’t get out of bed some days, then add on a boatload of meds that all cause her to gain weight and see how what kind of shape she’s in. She looked confused, but apologized profusely.

I left the salon with the realization that while I could elicit an apology, and, perhaps, some more polite behaviour in the future, I couldn’t really make her understand why I was so upset because it was so far outside the realm of her own experiences. On the other hand, would it have been better to leave well enough alone and just assume she wouldn’t get it anyway?

“Home Sick” is NOT the Same As “Vacation Day” !!!! (gack.)

So it’s spring break week. The entire point of spring break is to go out and have fun and relax right? Not for me. I get to spend my spring break making up all the exams that I missed. It sucks. I mean, what could I possibly need more than a week of rest and recuperation? (Well, other than a cure, of course.) Still, it makes sense to take them spread out over this break, since this way I can focus on just one exam at a time instead of trying to review the material for the makeup exam and learn the new information for the next one at the same time…

I’ve been working hard to try and keep people’s insensitive comments from getting to me. I really have. Sometimes I just can’t manage it though. This is a chat convo with a classmate from earlier today. The only thing I edited was to take out the names:

Classmate: hey! hows your break going?

Me: not too bad. trying to catch up on sleep – and exams i missed… hows yours been?

Classmate: ohhh, youre making up exams?

Me: yeah. missed a few when i was out sick, so im taking them over break. kinda sucks to be studying over break, but oh well…

Classmate: but you already got the days off that you were sick! so those were vacation days and these are class days! LOL!

Me: ummm, actually, i was home *sick* so those weren’t vacation days

Classmate: but vacation is for sleeping. and you slept on days you were home sick right? so that’s vacation.

Me: so you would say sleeping in on spring break day is the same as being sick with the flu?

Classmate: well, no, not for ME.. but you spend so many days in bed it’s the same thing right?

At that point I sent my classmate the link to the Spoon Theory, and said that hoped it would help explain better. Who knows if my classmate will read it, but hey it was worth a try.  I feel like it was kind of a cop out versus explaining, but I was seeing red rage and I didn’t want to say something offensive that I’d regret. I guess maybe ill try to follow up on it again after break and try to explain myself. It’s hard enough to miss class without people thinking that I’m not here because I’m on vacation…

You Can’t Always Get What You Want

If there’s one thing that lupus teaches you, it’s that. It stops you from doing the exercise you want, it keeps you from the Peace Corps, it limits your career choices, your hobby choices, your (usable/enjoyable) free-time, and, sometimes, your friend choices. Lately, I’ve come to consider these limitations just more symptoms of the disease.

I went back to the doctor yesterday. He raised the methotrexate dose AND reset the prednisone taper back to 30mg. I had worked my way all the way back down to 9mg, so that was quite a blow. I get so jittery at 30mg! Sigh. On the plus side, at least he doesn’t think I need to take a break from school…