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“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.

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it ain’t over ’til it’s over

Last night, I went to a 16th birthday party. There was cake, a live band, a cash bar for the adults, and lots of food. There was only one thing missing: a birthday girl. The little princess died 8 years ago of cancer. So for what would have been her 16th birthday, her mom threw a benefit. It was a lovely night, and hearing stories about her brought back a lot of suppressed memories. The little girl was like a sister to me, and her death was devastating. This little angelic girl, whose only complaint was that her hair was falling out, who was always ready with a smile and “how are YOU?” was gone.

I think everyone has a moment when they realize that life just isn’t fair.  Then they have a moment when they accept that fact. For some people, that’s the same moment. For me, the realization came when she was diagnosed with leukemia, but the acceptance didn’t come until she died. I guess until that point I kept thinking that something would set the universe right and she’d be cured and grow up to be an amazing person … but nothing did.

The thing is, by 8 years old, she’d already taught me one of the most valuable life lessons I’ve ever learned … life is short. Ok, that was an obvious one given the story, sorry. Here’s the real one: you can’t change some things in life. Some diseases are handed to you without provocation, and you’re stuck wondering “why me?!” Sooner or later you’re going to die. Usually, you cant control when or where or how. What you can control is this: What are you doing now? Who are you making happy? Whose life are you improving? It’s easy to wallow, but it doesn’t help anyone – not even you.

This doesn’t mean that you have to donate thousands of dollars or hours of service. Sometimes, all it takes is a compliment, a hug, an anonymous act of kindness, or even just a heartfelt smile. It ain’t over ‘til it’s over, so what are you doing to make the most of it?

Sunday Breakfast Club: Worst fear? Check.

This post was included in a “Facing Your Fears” edition of the Patients for a Moment Blog Carnival hosted by Selena at Oh My Aches and Pains on Wednesday, October 13, 2010!

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’m writing this post at 2:30am, having just returned from a friend’s birthday celebration. I should be sleeping, but I suddenly felt like writing, so here goes… Please forgive me if it’s not one of my more coherent posts..

One of the things that kept coming up in conversations (most of which I overheard rather than participated in) was the phrase “I’m so scared that…” Generally speaking this was followed by a few key phrases. Notably “that I’ll never get a job” or “that I’ll end up an old spinster.” Which instigated in my mind a recall action of all the other “I’m so scared that …” statements I’ve heard over the years. These often included worries about the death of parents. More to the point, it included worries about the speaker’s own health.

We spend all this time worrying about these things. Dreading the idea that the might happen. Worrying about what we are doing that might make those fears a reality…. How many people spend a lot of time considering what we would do if they actually DO come true? I surely didn’t, but here I am.

For those of us with chronic illnesses, one of those major fears has already come true, though. So what now? I guess there are a few options: we can wallow. we can ignore that this was a fear in the first place. or, I guess, we can embrace it. Ok, yes, I know that sounds utterly ridiculous. I mean, who embraces a worst fear come true? Well I’d be lying if I said that I have, or even if I said that I’ve been really trying to. I guess the real question is .. SHOULD I be trying to? Ignoring it doesn’t help me. Neither does pretending this was never something I was scared might happen. Still, I am determined to try to embrace what I can. Make the best of a bad situation, so to speak. Through all the pain and suffering we do learn things. We learn compassion. We learn acceptance. Many of us could probably treat a number of conditions ourselves at this point.

Here’s the real kicker though: this fear of becoming ill doesn’t stop when you are ill. Instead, the fear continues to course through you: you worry your meds aren’t the right ones, you worry about the side effects of those medications, you worry that your diagnosis is incorrect, you worry about all the impact on your life and relationships your illness will have, and most of all you fear the escalation of your illness.

At the end of the day, our situation sucks – no two ways about it. Nevertheless, we can choose to focus on the fear or we can choose not too. We might not be able to control whether or not we have an illness, but we can control how we react to having it.

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.

it’s supposed to be a “doctor-patient” not “doctor-disease” relationship

This blog post was included in Grand Rounds: Medical Education hosted by Dr. Elaine Schattner at Medical Lessons.”

This post was included in the Patients for a Moment blog carnival: advice for medical students/professionals hosted by Rachael at “Glass of Win.”

 

My last post, “what your doctor couldn’t tell you” was directed towards newly diagnosed patients. In it, I tried to outline some key things – additional “side effects” – about life with a chronic illness that I wish my doctor could have told me about. As I was writing that post, I started thinking about WHY my doctor couldn’t tell me these things. I realize that a lot of it is stuff that you have to experience, but shouldn’t a doctor treating a number of chronic disease patients be aware that many of his/her patients are experiencing those things? I think this comes down to an inherent conceptual question: is my doctor treating ME or is my doctor treating my diagnosis? I guess a question that really plays into that is this: which was my doctor taught to do?

A medical education is largely focused on the obviously important science. This means how the body functions, the pathology of diseases, and how the medications work. Medical knowledge has increased, but the time frame of medical school hasn’t. We just keep cramming more and more information into students in the same amount of time. It stands to reason, then, that other things have been necessarily excluded. As an MPH student, one of my majors was bioethics. I was lucky enough to have an amazing professor – one who also taught the medical school ethics classes. One of his biggest complaints was that the medical students, in his opinion, “just don’t care [about his class], because the material won’t be tested on exams.”

I have asked medical students, and they tell me that they are taught how to communicate with patients. How to empathize (a concept that I will have to table for another post),  which questions to ask in order to elicit the most information from their patients and so on. I’ve been told that some schools bring in patients to talk about their experiences – but that many students skip those sessions. I guess you can try to teach these things, but it doesn’t do much good if the students can’t be bothered to care (or just don’t have the time to). This shift in focus is visible outside of the schools too. We have increased the ability of a doctor to work “reasonable” hours (debateable, of course) and to have a private life. Gone are the days of house calls and midnight phone calls at home. Doctor-patient relationships are now restricted to the walls of medical institutions.

So where does this leave the patients? It can be argued that our treatments are better. Well, unless you have lupus like I do, in which case treatments haven’t really changed in a very long time. Still, given that it’s a complicated illness, I’m glad that my doctor understands all the science behind it. The thing is, my illness extends far beyond the symptoms laid out in the medical textbooks. It extends into every aspect of my life. As do the side effects of the prescriptions used to treat it. I fight this illness every day. It can take away a lot of things in my life: my hobbies, my life goals – and my life possibilities, my friends, my time, my energy … I’ll stop listing now, because I have other points to make. I’m sure you get the picture. In fact, my illness takes away much of what fills most people’s lives. This, I’m sure you can imagine, opens up a distinct road towards depression.

So I ask you: how can a doctor ignore these things? How can a medical student be allowed to skip the patient experience lectures? How can doctors be trained in a system that has them so stressed out about the science exams that they can’t bother with the ethics? I’m sure, if you are part of that field, you are wondering why I feel I am qualified to comment on this issue. I suppose I’m not – from an institutional persespective. Still, let me remind you of this: doctors exist in order to treat patients. Patients. Not diseases. It is, after all, a “doctor-patient” not “doctor-disease” relationship.

I know that doctors are pressed for time. I know that they must feel that they need to focus on the most important part of the illness to tell me about. The problem is, what they consider unimportant and not worth discussing is the part of my illness that is forefront in my experience and in my life. The questions about “impact of illness” are supposed to be part of a routine medical history .. and so they are: they are routinely skipped. By neglecting to discuss the impacts my illness has on my life, my doctor is being negligent as far as I’m concerned. My doctor is failing to inform me about the impacts of my disease. Any doctor that has treated me this way has not treated me again.

Here is what I fear to be at the root of this problem: does my doctor even know that these issues are issues? Has my doctor ever really taken the time to find out what life is like for chronic illness sufferers of diseases like lupus?

The medical education system needs to remember it’s roots – and the role of the professionals it is training. We are patients. We are not just a diagnosis for you to publish articles about and discuss at your next grand rounds. We exist outside of your clinics … your hospitals … your exam rooms. Our illnesses exist outside of them too. Why aren’t there exams to find out if students are learning that? Why isn’t there more focus on the humanitarian side of a doctor’s role?

Patients aren’t delusional. We know that the amount of time the doctors on Scrubs or Grey’s Anatomy have to interact with their patients is completely unrealistic. We aren’t asking you to spend you days off discussing our lives with us. We are just asking doctors to remember that their textbooks don’t cover a major aspect of our illnesses. We are asking professors to remember that they shouldn’t limit their explanation of illness X to it’s pathology. The patient life impact of the disease shouldn’t be relegated to the “if there’s time” slides tacked-on at the end of the PowerPoint file. Don’t make it okay for students to ignore the patient-lecture series. Don’t test only the science. How are doctors treat us today may or may not be alterable, but the next generation of doctors is currently in schools. They are still being trained. The science of medicine may have changed, but the reason doctors exist hasn’t. It’s not a question of can regain the doctor-patient relationship. It’s a question of do we want to.

Sunday Breakfast Club: Toy Story (NO SPOILERS)

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.

Don’t worry. I won’t ruin the movie for you. I WILL say that Toy Story 3 was hilarious. I enjoyed it the most of the 3. Added bonus: compare the improvement in animation from Toy Story 15 years ago to this one. Amazing. The premise of the movie – as determined from the TV ads and previews – is that as our darling Andy is going off to college, the toys are getting donated to a preschool. Here’s the other thing we learn: not all toys are created equal. Well, okay. They’re CREATED equal, but as they endure different lives they become very different. So do we.

So here’s my topic for today: Do you ever feel like the toys?

I do. I feel like my friends have moved on to the next phase of their lives and I’ve been left behind … and the most irritating part is that I feel like I should be waiting around for them to come to their senses and need me again… and I hate it. It makes me feel pathetic. That being said, does anybody blame the toys for waiting around? No. … but we don’t blame Andy for moving on to college either.

The concept of a disappearing friend syndrome (anyone know who came up with that phrase?) is not a new one. You will find mention of it all over the blogs, discussion boards, chat rooms and Twitter feeds.

The reasons for it are many fold, but when you really think about it they come down to 2 key points.

  1. We don’t make for the most reliable friends. We often end up cancelling last minute – and that’s just the events we think we MIGHT be able to manage in the first place. Of course, we are not fully to blame. We obviously can’t help that we are ill. We should be able to rely on our friends. Isn’t that the whole point of friends?
  2. Our friends don’t understand. So how do we fix this one? Well, we can’t fix it any more than we can fixt point one. There is only so much educating we can do. Even the amazing Spoon Theory can only go so far if people aren’t willing to listen.

Where does this leave us, you ask? Well, it leaves us exactly where we started. Except for one key fact – we, like the toys, have each other. As much as it often feels like are alone in the world having been abandoned by most of the people we hold near and dear, it’s easy to feel lost. I do. Even knowing that I have all of you, I still feel alone sometimes. Let’s face it, sometimes you want a flesh and blood friend… because I do honestly feel that not everyone has abandoned me because they can’t or won’t deal with the trials of an ill friend. I think some of them really just don’t get it.

So I ask you – what, if anything, has worked to help your friends to understand?

Sunday Breakfast Club: we change the future

“If you wonder what you were doing in the past, look at your body; to know what will happen to you in the future, look at your mind.” – HHDL

As I do believe in reincarnation I was a little put off by this statement. Not that I’m doubting the wisdom of His Holiness the Dalai Lama or anything, but I guess it struck a cord. I don’t blame myself for my illness. Well, I don’t blame my illness on anything I’ve done in this lifetime. Or, at least, I try not to. Still, it’s hard to know what I may have done in a previous lifetime… Anyway, I know that I have readers with many different religious beliefs so I won’t belabor the reincarnation point. The past is the past, so let’s move on to the second part of the quote: what will happen to us in the future?

As I am not averse to admitting to my guilty pleasures on this blog, let me admit to another: the Twilight series. I was watching Twilight just the other night with my cousin and my sister. At least, I was watching it until I heard the quote:

“Alice’s visions are subjective, the future can always change.”

Well, you all know how I am by now. I obviously zoned out and disappeared into that place in my mind where I fixate on a quote or saying until I figure out what I think about it. I mean no disrespect by joining this Twilight quote to one by HHDL, but I think the concepts are connected. The future can always change, because we can change it by how we interact with the world … and how we interact with the world is largely determined by our own mindsets.

The problem with a chronic illness, is that it often limits how well we manage to interact with the world. Our illnesses keep us at home – often in bed – day after droll day. I never thought I could be so tired of the inside of my room, but then again I never thought I could be so tired either. The days when I would fake sick to stay in bed seem a distant memory now that I get so excited to actually NOT be so sick I must stay in bed. It’s so easy to get depressed – and therein lies an even bigger toll we pay to our illnesses. When we’re depressed we don’t want to do anything. We don’t want to interact with the world or anyone in it. We need to beat that, but it’s very, very hard. We must find ways to interact with the world because I get the most depressed when I feel alone and isolated. A feeling that can be at least partly alleviated.

In today’s technology-centered world, we are hardly as restricted as we would have been 100 years ago. After all, we can blog, we can tweet, we can email. We can send text messages and make phone calls. We must do what we can not only to interact with the world, but to keep our spirits up. We support each other and we rally each other to achieve what we want to achieve in our lives. Be it getting out of bed that day or walking to raise money for lupus research. I find, however, that it is actually an upward spiral. Your support helps me to get myself to school and to study, so I do better in my classes, and that makes me feel better about myself … which leads to more interactions with all of you wonderful people. And so on. Even more importantly, you all are there to boost me when I slide back down that spiral again, too keep me from sliding all the way down to where that spiral lands me: smack dab in the middle of my bed, under my covers, refusing to get up. This connection with the community has been my lifeline lately. It’s what keeps me from crawling up in the fetal position under my covers and never coming out. I don’t know how I got by day-to-day before I joined the online community, I cant imagine getting by without all of you wonderful people!

So this week… I ask you, my beloved readers, what do you do to keep your spirits up?