Over the Independence Day holiday weekend, my husband and I took a road trip to Houston. We met up with his sister, Andria, one of my most favorite people, and her fiance', Victor, who has quickly become the newest addition to our crazy-awesome-loud-funny family. We enjoyed two Red Sox-Astros games at Minute Maid park, along with the excellent fireworks shows afterward. They just retract the roof of the dome and set the fireworks to popular music. The best part is that there really isn't a bad seat in the house; anyone in the ballpark can take in the 15-minute show with a nice view. Apparently, this happens after every ballgame on Friday nights - "Friday Night Fireworks" sponsored by Marathon Oil. Oh, to have that much money.
On Saturday we walked around the mall without purchasing very much at all. We frankly don't have the money to spend and have enough bills to think about that we can talk ourselves out of buying almost anything. We ate yummy Mexican food, sat around the hotel room and talked, talked, talked. Sunday was the second ballgame and another win for the Red Sox - there were a significant number of cheers and our fan base must have outnumbered the home team fan base quite a bit. Embarrassing, I know, but what can I say? New Englanders take their baseball more seriously. :D Sunday night's post game fireworks were a special event, unlike the typical Friday night ones. They were set to patriotic music for the one holiday that brings all of America together, Independence Day. These were sponsored by Chesapeake Energy, if you were curious.
Later that day we went to Dave and Busters - a really, really fun place, kind of a grown-ups version of Chuck E Cheese. You can play different arcade-style games, eat at the restaurant, or play billiards. The four of us are definitely just big kids, so it's perfect for us. I even won a stuffed dolphin from one of those big bins with all the stuffed animals in them and the claw that grabs them after you get it positioned just right (no idea if these things have a formal name). Anyway, I NEVER win at those things! The dolphin's name is Astro and he lives in my office now. :D
One of the coolest games at D&B's, however, was the arcade version of "Deal or No Deal?" You've probably seen the game show while flipping through the channels on TV. It's a game of statistics, in which you select and open briefcases with a mysterious amount of cash, hoping to hit the jackpot. As you narrow down the briefcases, you can decide whether to take the offer suggested by "the Banker" - money in your pocket - or risk winning more from the briefcases that are still left. Playing it at an arcade like this is great because you get to gamble without losing any actual money. It's almost like a game of chicken - the game is fun until you walk away with nothing. You have to balance risk with reward, of course, and think sensibly.
I wish I could translate this kind of thinking into the thick heads of our government.
Our weekend was fun and whimsical; we were free from responsibility for a moment. We always have fun just spending time together, and a weekend like this before returning to work after the holiday is always refreshing. It was only for a short while, though. We know that if we were to just stop going to work altogether we would lose our jobs, our paychecks, and the fun would NOT last. Now that our government is mere days away from a financial Doomsday, any fun political bantering and debate is long gone. Someone has to swerve their car in this very dangerous game of chicken, or a huge chuck of America (and many beyond our borders) will suffer. Seriously.
The natural next step, to me and others, is to withhold the pay of our elected officials. If they aren't doing their jobs by attempting to end this stalemate and keep the country running, they really don't deserve their paycheck. They need to work like the rest of America, balancing risk with reward and thinking sensibly. They need to speak with one another as competent adults, with mutual respect and compassion. They need to shut up and listen to one another with a bit of humility, checking their enormous egos at the door.
Is this really too much to ask from the people we charged with the leadership of our nation? I would be willing to bet that many Americans had never heard of a debt ceiling before this whole ridiculous thing began. We have our own problems and responsibilities to juggle without becoming experts on politics. This is why we elect people that (presumably) we feel we can trust - they do their part, we do ours. We work, pay taxes, and know that our government is there to support us. Now they are not holding up their end of the bargain. I love my country and I want to keep faith in my federal government, but this current situation has me feeling exasperated.
Can we make a deal already? Can we compromise, the way that coworkers, family, friends, and spouses compromise everyday? Can we just put aside the part lines and do what needs to be done? We've already gotten a tiny preview of what can happen when governments shut down in our own state of Minnesota. They were shut down for nearly two weeks at the beginning of this month. State workers had nothing to do but wait and the state lost millions in revenue. Of course, political bickering has always been crazy, but it seems to have amped up in intensity. It all seems more childish, with both sides claiming that the other stole the toy out of the sandbox that was meant for them! Feel free to picture me crossing my arms and pouting my lips defiantly at this point.
Let's move beyond the soundbites and the empty promises. Beyond the symbols that politicians love to wave in our faces, like those little American flag pins you always see them wearing on their jackets at a press conference. Let's do away with the tweets that barely scratch the surface of the problem and actually sit down and discuss the issues that deserve discussion. Let's do so with an open mind. We all have life experiences and knowledge to contribute to the discussions of important issues, and we need to be open to these views if we're ever to learn and grow - this applies equally well to federal governments as it does to individuals.
So, let's get to work. If necessary, let's confine all of Congress and President Obama into a bunker somewhere in D.C. As my mom pointed out to me, we can "slip them pizza under the door and not let them out until they come to a compromise!" They could wear pajamas or whatever they're most comfy in, with some coffee provided, too. No cameras or press would be allowed, no stenographer to keep track of who says what. No entertainment, no internet access. Just a room with a locked door, forcing them to all speak with each other.
Quite the fantasy, right? It's kind of funny but also kind of sad to picture such a scenario. Has it really become this challenging for our country's leaders to sit down together and talk? Part of the problem has to be that politician's are always worried about offending their base and getting enough votes for reelection. In fact, how would they behave if there was no possibility of reelection? If they only had one shot, one term in office, from the lowliest mayor to the President himself?
Mayor Michael Nutter, a Democrat from Pennsylvania, was recently a guest on the Rachel Maddow Show. He mentioned the 9% unemployment rate in Philadelphia and said, "When people in Philly talk about the debt limit, that's usually them talking about their own personal debt limit and how much debt they're accumulating in their own lives". It's got to be true elsewhere as well. We have our own lives to manage and we take them seriously. And we expect the government to do the same. Mayor Nutter went on to say, "Folks [in America] are truly suffering...and we don't have time for this kind of gamesmanship".
Wednesday, July 27, 2011
Wednesday, June 29, 2011
Treatment to Keep Arthur Subdued
Those of us with RA sometimes like to refer to our disease as "Arthur"...get it? Arthritis sounds like Arthur? :D Okay, so it's not exactly laugh-out-loud funny, but a little sarcasm never hurt anyone. What do you expect from a group of people living with a chronic and painful disease? We need humor. If we don't laugh, we might cry. I think we can all agree that laughter beats tears anytime. So, we personify our disease and refer to it as if it's a living and breathing entity all its own. RA can certainly feel this way at times, because it's always with us. There are a lot of different treatment options, but Arthur doesn't always respond to them or may only respond for a limited time. He's always hanging around, impacting our daily lives to a greater or lesser degree, being kept at bay with medication or raging through our bodies unchecked.
Arthur is a sneaky little devil. He can be subdued for a long time, and just when you start to forget about him "he taps on your shoulder (or any other joint or organ for that matter) and says, 'Hey, I'm still here!' Let's just say it's a little annoying!" (quoted from a friend of mine). Arthur also does the majority of his damage on the inside of us, making ours an Invisible Disease. In other words, it's usually not immediately obvious from looking at us that we have RA. Unless we have massively swollen joints, you might not notice anything unusual about us. You can't see the disease eating away at our joints, or inflaming our lungs to make breathing harder, or inflaming our heart and upping our chance of a heart attack. You can't see the fatigue, the low-grade fever, the full medicine cabinet that allows us to function. It's often invisible but no less real. There is one excellent blog that focuses on this, www.butyoudontlooksick.com. Written by a woman with lupus (similar to RA in a lot of ways), the blog describes what life is like when you don't look as sick as you truly are.
Treatment for Arthur is complicated because there are a lot of factors in play. How effective is the treatment? How costly is it? What are the potential side effects? How does the treatment help with both the short-term and long-term consequences of RA? These must all be considered, there are no easy answers, and RA patients must make decisions about treatment for themselves because it is very personal. What works for one person with RA doesn't work for another. What works at one time for one person with RA doesn't work later on, because drugs lose their effectiveness or our bodies build up a resistance to them. For some, the benefits of a drug outweigh the risks. For others, the high financial cost of a drug may make it an impossibility. Of course, there is a lesson here - when making decisions that impact our health, it's good to be a little selfish. We have to live in our bodies and we have to feel confident about the medications and treatments that we choose. Your neighbor who tells you that a mango drink twice a day will cure you? Pay her no mind. You cousin who thinks it's all in your head and can't understand why you take such expensive and dangerous medication? She doesn't have a disease attacking her body from the inside out, so it's very easy for her to roll her eyes. Even your doctors don't fully understand what you're going through. Some do more than others, of course, and they usually mean well. But don't let them pressure you into the newest drug that promises a miracle - it's your life.
There are the day-to-day struggles to be faced; extreme fatigue and pain are chief among them. Even for those like me who live a relatively normal life with RA, the fatigue is something we constantly battle. There isn't much to do other than take it easy, get plenty of sleep at night, and rely on caffeine. I need at least 9 hours of sleep at night to really wake up feeling refreshed the next day. Some people with RA need even more rest, especially if they're having a flare (that's the term for when RA is really active - it could be a few weeks at a time, a couple months, or for the ones who really hit the jackpot it could be that they live everyday in a flare, never seeming to find treatment that works for them).
Then there is the pain that most people with RA live with, which is usually lessened by medication. Drugs like NSAIDs (pronounced "n-sad") taken at a high dosage can really help. Naproxen is one such NSAID that many of us take; I take 500 milligram tablets once a day. You might recognize Naproxen as the main ingredient of Aleve, except that in Aleve it is only available in 200 mg tablets. Let's look at that name for a second - NSAID stands for "non-steroidal anti-inflammatory", meaning that it works differently from a steroid drug and it works to combat the inflammation the RA causes. This is significant because steroids can also be taken for pain management. Prednisone is a commonly prescribed steroid, and it's usually taken at a high dosage for a short period of time during a flare...*sigh* Ahh, prednisone. We love it and we hate it! It can make you feel like a superhero, but it also makes you eat everything in sight so that you inevitably gain 5-10 pounds. It can affect your mood drastically, so that PMS feels like a peaceful holiday in comparison. My friend, Carol, has a great blog about her experience with RA, and you might like her assessment of prednisone: www.tenn2texas.wordpress.com.
Then there is the depression. Let's be real right now and admit to ourselves that half the country is taking anti-depressants. It isn't something to be ignored or whispered in hushed tones, it's a reality. It's even more prevalent among people with an incurable, lifelong, painful disease such as RA. Most of my friends with RA take Zoloft or some other anti-depressant medication and find that it helps them. I'm extremely fortunate to have a mild case of RA and I can lead a life closer to normal than many of them. But faced with pain every single day that ranges from a throbbing 3 on the pain scale to a gnawing 13.5? That would likely depress me, too. During my last flare in 2010, I had a supportive family and a happy life (and still do!) - these are a huge help! Others aren't as fortunate, and I believe depression finds them quickly when their family is unsupportive and other stress factors are in place.
Equally important, there are numerous treatment options for the long term consequences of RA. Even if our day-to-day pain, fatigue, and depression can be managed, that is only the beginning. We have to do all we can to prevent further damage to our joints and organs, or we risk making our situation much worse. Thankfully, there are medications that can suppress our overactive immune system and help slow the inflammatory process. Maybe we can keep the disease from moving onto different parts of our body with these drugs and a little hoping and praying. None of these drugs comes with a guarantee, though. In fact, they come with more side effects and risks than we would like. I'll write more on this important subject later, but for now I'll bring this long post to a close. More on the pricey and dangerous treatments of RA coming up soon! For now, here's wishing everyone a happy fourth of July weekend!! :D
Arthur is a sneaky little devil. He can be subdued for a long time, and just when you start to forget about him "he taps on your shoulder (or any other joint or organ for that matter) and says, 'Hey, I'm still here!' Let's just say it's a little annoying!" (quoted from a friend of mine). Arthur also does the majority of his damage on the inside of us, making ours an Invisible Disease. In other words, it's usually not immediately obvious from looking at us that we have RA. Unless we have massively swollen joints, you might not notice anything unusual about us. You can't see the disease eating away at our joints, or inflaming our lungs to make breathing harder, or inflaming our heart and upping our chance of a heart attack. You can't see the fatigue, the low-grade fever, the full medicine cabinet that allows us to function. It's often invisible but no less real. There is one excellent blog that focuses on this, www.butyoudontlooksick.com. Written by a woman with lupus (similar to RA in a lot of ways), the blog describes what life is like when you don't look as sick as you truly are.
Treatment for Arthur is complicated because there are a lot of factors in play. How effective is the treatment? How costly is it? What are the potential side effects? How does the treatment help with both the short-term and long-term consequences of RA? These must all be considered, there are no easy answers, and RA patients must make decisions about treatment for themselves because it is very personal. What works for one person with RA doesn't work for another. What works at one time for one person with RA doesn't work later on, because drugs lose their effectiveness or our bodies build up a resistance to them. For some, the benefits of a drug outweigh the risks. For others, the high financial cost of a drug may make it an impossibility. Of course, there is a lesson here - when making decisions that impact our health, it's good to be a little selfish. We have to live in our bodies and we have to feel confident about the medications and treatments that we choose. Your neighbor who tells you that a mango drink twice a day will cure you? Pay her no mind. You cousin who thinks it's all in your head and can't understand why you take such expensive and dangerous medication? She doesn't have a disease attacking her body from the inside out, so it's very easy for her to roll her eyes. Even your doctors don't fully understand what you're going through. Some do more than others, of course, and they usually mean well. But don't let them pressure you into the newest drug that promises a miracle - it's your life.
There are the day-to-day struggles to be faced; extreme fatigue and pain are chief among them. Even for those like me who live a relatively normal life with RA, the fatigue is something we constantly battle. There isn't much to do other than take it easy, get plenty of sleep at night, and rely on caffeine. I need at least 9 hours of sleep at night to really wake up feeling refreshed the next day. Some people with RA need even more rest, especially if they're having a flare (that's the term for when RA is really active - it could be a few weeks at a time, a couple months, or for the ones who really hit the jackpot it could be that they live everyday in a flare, never seeming to find treatment that works for them).
Then there is the pain that most people with RA live with, which is usually lessened by medication. Drugs like NSAIDs (pronounced "n-sad") taken at a high dosage can really help. Naproxen is one such NSAID that many of us take; I take 500 milligram tablets once a day. You might recognize Naproxen as the main ingredient of Aleve, except that in Aleve it is only available in 200 mg tablets. Let's look at that name for a second - NSAID stands for "non-steroidal anti-inflammatory", meaning that it works differently from a steroid drug and it works to combat the inflammation the RA causes. This is significant because steroids can also be taken for pain management. Prednisone is a commonly prescribed steroid, and it's usually taken at a high dosage for a short period of time during a flare...*sigh* Ahh, prednisone. We love it and we hate it! It can make you feel like a superhero, but it also makes you eat everything in sight so that you inevitably gain 5-10 pounds. It can affect your mood drastically, so that PMS feels like a peaceful holiday in comparison. My friend, Carol, has a great blog about her experience with RA, and you might like her assessment of prednisone: www.tenn2texas.wordpress.com.
Then there is the depression. Let's be real right now and admit to ourselves that half the country is taking anti-depressants. It isn't something to be ignored or whispered in hushed tones, it's a reality. It's even more prevalent among people with an incurable, lifelong, painful disease such as RA. Most of my friends with RA take Zoloft or some other anti-depressant medication and find that it helps them. I'm extremely fortunate to have a mild case of RA and I can lead a life closer to normal than many of them. But faced with pain every single day that ranges from a throbbing 3 on the pain scale to a gnawing 13.5? That would likely depress me, too. During my last flare in 2010, I had a supportive family and a happy life (and still do!) - these are a huge help! Others aren't as fortunate, and I believe depression finds them quickly when their family is unsupportive and other stress factors are in place.
Equally important, there are numerous treatment options for the long term consequences of RA. Even if our day-to-day pain, fatigue, and depression can be managed, that is only the beginning. We have to do all we can to prevent further damage to our joints and organs, or we risk making our situation much worse. Thankfully, there are medications that can suppress our overactive immune system and help slow the inflammatory process. Maybe we can keep the disease from moving onto different parts of our body with these drugs and a little hoping and praying. None of these drugs comes with a guarantee, though. In fact, they come with more side effects and risks than we would like. I'll write more on this important subject later, but for now I'll bring this long post to a close. More on the pricey and dangerous treatments of RA coming up soon! For now, here's wishing everyone a happy fourth of July weekend!! :D
Monday, June 27, 2011
Bittersweet Diagnosis and Living with "the other Arthritis"
Most diseases progress like this: diagnosis, treatment, cure. In my lifetime I sincerely hope to see that third and final stage happen for me and all the rest of my arthritic friends. Anyhow, getting the diagnosis is a big step for anyone. It's a little bittersweet because it involves feeling enormous relief ("Thank God! This thing has a name and I'm not the only one in the world to have experienced it!") followed by overwhelming helplessness ("There's no cure??...Wow, There's no cure - now what?!).
This helplessness is exacerbated by the fact that JRA is somewhat rare. Everyone has at least heard of diabetes and cancer, and even other diseases that are less common than JRA get a lot of publicity (Lupus, Parkinson's, etc.). With JRA and other lesser-known diseases, we have to explain ourselves to family and friends who want to know what's wrong with us. Explaining our condition is not so bad - I do like to spread awareness and generally respond to people with "I'm glad you asked!", followed by my launching into an explanation.
Complications arise when people have misconceptions about the disease, however. JRA and (the adult form) RA are NOT the same as the arthritis your 90-year-old grandmother has. No offense to grandma. I'm not knocking her condition. But what she has (more than likely) is osteoarthritis (OA), brought on by the wear-and-tear of joints from many years of use. OA is the most common form of arthritis and when elderly people suffer from stiff and painful joints, OA is usually what is behind it. Many medications, like Tylenol and Aleve, are a big help to these folks. Their pain is very real, but at the risk of repeating myself I have to emphasize that it is not the same as Rheumatoid Arthritis.
Actually, the word "arthritis" in the name is truly a misnomer, and many are calling for a name change that will reflect the disease's true characteristics. A friend of mine has suggested "RAID", to stand for "Rheumatoid Autoimmune Disease". I like it and I kinda hope it catches on! :D As long as "arthritis" is in the name, many people will confuse it with osteoarthritis. I can't tell you how many times I've heard people say "Oh, my grandma has that! You're way too young to have that!". I smile sweetly while in my mind I'm frustrated. I explain that autoimmune diseases do not discriminate - they attack people of all ages, genders and ethnicities. They attack organs, tissues, joints, blood vessels. They require lifelong treatments that can be very dangerous in and of themselves (more on that later).
Now for a real definition, finally: JRA and its adult cohort RA are autoimmune diseases characterized by inflammation of the synovial lining of multiple joints. Inflammation is the cause of those red and swollen joints I was describing in the previous post. What happens is that the body's immune system goes haywire. The same immune system that helps us fight off colds and infections gets confused. It starts attacking the lining of the joints, in this case, and sees it as a foreign object. Yep, you read that right: the body attacks itself! A very similar process occurs in other autoimmune diseases, in which an overactive immune system turns on the body and attacks healthy tissue and bodily organs. Heart, lungs, kidneys, you name it - there is an autoimmune disease for them all. One example is Type 1 diabetes, also known as autoimmune diabetes, which attacks healthy pancreas cells in children (so, so heartbreaking!!).
This is probably a good time for some perspective, and numbers help with that. RA affects approximately 1.3 million Americans (that's about 1% of the U.S. population), and I've already mentioned the 300,000 children with JRA (under the age of 18). The cause is unknown, but scientists have isolated genetic markers that are associated with RA. With this genetic predisposition, all that is needed is something to trigger the disease. Physical or emotional trauma can set the disease in motion, as well as a virus or bacteria. Even smoking can be a trigger (one more reason to quit, readers!). The idea is that the body's immune system starts to attack the virus, or the carcinogens from the cigarettes, or the body moves to correct an injury after a car accident...and after it's attacked the bad "stuff" (enough technical terminology going on here!) it just doesn't know when to stop. It turns on healthy "stuff" and the rest as they say is history. The Arthritis Foundation has a nice description on their website, if you're interested. Visit arthritis.org and click on 'who gets RA?".
What triggered my JRA at such a young age? I had choked on some carrots a few weeks before I first woke up with swollen knees. The doctors had to do an emergency broncoscopy on me - basically sucking all the little carrot pieces out of my throat and lungs - and we believe that this surgery was the physical trauma that set off the disease. Crazy, huh? To this day, whenever I feel myself start to choke on carrots, I can't help but smile. What's even crazier is that many with the genetic markers for RA never get it, and and not all people with RA have those genetic markers. Like I said, the cause is unknown and much more research needs to be done.
This helplessness is exacerbated by the fact that JRA is somewhat rare. Everyone has at least heard of diabetes and cancer, and even other diseases that are less common than JRA get a lot of publicity (Lupus, Parkinson's, etc.). With JRA and other lesser-known diseases, we have to explain ourselves to family and friends who want to know what's wrong with us. Explaining our condition is not so bad - I do like to spread awareness and generally respond to people with "I'm glad you asked!", followed by my launching into an explanation.
Complications arise when people have misconceptions about the disease, however. JRA and (the adult form) RA are NOT the same as the arthritis your 90-year-old grandmother has. No offense to grandma. I'm not knocking her condition. But what she has (more than likely) is osteoarthritis (OA), brought on by the wear-and-tear of joints from many years of use. OA is the most common form of arthritis and when elderly people suffer from stiff and painful joints, OA is usually what is behind it. Many medications, like Tylenol and Aleve, are a big help to these folks. Their pain is very real, but at the risk of repeating myself I have to emphasize that it is not the same as Rheumatoid Arthritis.
Actually, the word "arthritis" in the name is truly a misnomer, and many are calling for a name change that will reflect the disease's true characteristics. A friend of mine has suggested "RAID", to stand for "Rheumatoid Autoimmune Disease". I like it and I kinda hope it catches on! :D As long as "arthritis" is in the name, many people will confuse it with osteoarthritis. I can't tell you how many times I've heard people say "Oh, my grandma has that! You're way too young to have that!". I smile sweetly while in my mind I'm frustrated. I explain that autoimmune diseases do not discriminate - they attack people of all ages, genders and ethnicities. They attack organs, tissues, joints, blood vessels. They require lifelong treatments that can be very dangerous in and of themselves (more on that later).
Now for a real definition, finally: JRA and its adult cohort RA are autoimmune diseases characterized by inflammation of the synovial lining of multiple joints. Inflammation is the cause of those red and swollen joints I was describing in the previous post. What happens is that the body's immune system goes haywire. The same immune system that helps us fight off colds and infections gets confused. It starts attacking the lining of the joints, in this case, and sees it as a foreign object. Yep, you read that right: the body attacks itself! A very similar process occurs in other autoimmune diseases, in which an overactive immune system turns on the body and attacks healthy tissue and bodily organs. Heart, lungs, kidneys, you name it - there is an autoimmune disease for them all. One example is Type 1 diabetes, also known as autoimmune diabetes, which attacks healthy pancreas cells in children (so, so heartbreaking!!).
This is probably a good time for some perspective, and numbers help with that. RA affects approximately 1.3 million Americans (that's about 1% of the U.S. population), and I've already mentioned the 300,000 children with JRA (under the age of 18). The cause is unknown, but scientists have isolated genetic markers that are associated with RA. With this genetic predisposition, all that is needed is something to trigger the disease. Physical or emotional trauma can set the disease in motion, as well as a virus or bacteria. Even smoking can be a trigger (one more reason to quit, readers!). The idea is that the body's immune system starts to attack the virus, or the carcinogens from the cigarettes, or the body moves to correct an injury after a car accident...and after it's attacked the bad "stuff" (enough technical terminology going on here!) it just doesn't know when to stop. It turns on healthy "stuff" and the rest as they say is history. The Arthritis Foundation has a nice description on their website, if you're interested. Visit arthritis.org and click on 'who gets RA?".
What triggered my JRA at such a young age? I had choked on some carrots a few weeks before I first woke up with swollen knees. The doctors had to do an emergency broncoscopy on me - basically sucking all the little carrot pieces out of my throat and lungs - and we believe that this surgery was the physical trauma that set off the disease. Crazy, huh? To this day, whenever I feel myself start to choke on carrots, I can't help but smile. What's even crazier is that many with the genetic markers for RA never get it, and and not all people with RA have those genetic markers. Like I said, the cause is unknown and much more research needs to be done.
Sunday, June 26, 2011
JRA: Juggling Radical Ailments
I'm not sure what a "normal" childhood is supposed to be, but I'm certain I didn't have one. And so much the better! Juggling radical ailments in addition to the minefields of a typical childhood made things interesting. I not only grew up much faster than my peers but also learned to appreciate the blessings in my life very early on - two wonderful parents, a happy home, a loyal dog, and an excellent education, among others.
My journey with JRA began when I was 18 months old and will follow me forever. I had been walking just fine at that age, when one morning I woke up with knees that were swollen, red, and painful. My mom tells me that I crawled into the kitchen, mostly using my arms, sobbing in pain. My knees were more than twice their normal size and it was clear that something was very wrong. You can imagine how this would make any mother feel, of course. Here was her only child, healthy and happy just yesterday, in agonizing pain that she couldn't eradicate.
Pediatricians weren't much help. They suspected that I had been abused, or was having a bizarre allergic reaction to something (even after negative allergy tests disproved this theory). My parents were determined to get a diagnosis for me, however, and would stop at nothing. It helped that both of them were in the medical field - my dad was a cardiologist and my mom an EKG technician - and so they knew the sooner I got care, the better.
The orthopedist did x-rays, an MRI, all that fun stuff, and quickly realized that I needed to see a rheumatologist...which was much easier said than done. There is a terrible shortage of pediatric rheumatologists in the U.S., and the waiting lists to see these specialists are ridiculously long. We waited a couple months, and that was a short time. In fact I think it would be easier to get 5 minutes with the President than with a pediatric rheumy as a new patient. (From here on out, by the way, I'll refer to my doctor as a rheumy. Makes for a nice abbreviation.)
By the time I saw this rheumy, my symptoms had gotten worse. Now the joints in my fingers and toes were red and swollen as well as my knees. Looking back, I realize it was a blessing in disguise - my symptoms looked very "textbook", and my blood tests matched them. Diagnosis: Juvenile Rheumatoid Arthritis, also known as JRA. The more specific diagnosis was Polyarticular Juvenile Rheumatoid Arthritis, to give you a real mouthful. This name was just fancy doctor-speak for "more than 5 joints affected".
Today, the disease is known as Juvenile Idiopathic Arthritis, or JIA. The distinction isn't all that significant, but it does make one aspect of the disease quite clear: there is no known cause. Lots of studies have been done to look for a definite cause, but the word "idiopathic" means that a cause cannot be pinned down. Some studies emphasize a genetic component, others an environmental one, and still others some combination of both. At any rate there is no definite cause and, more importantly, no cure for the 300,000 children in the country with JRA.
My journey with JRA began when I was 18 months old and will follow me forever. I had been walking just fine at that age, when one morning I woke up with knees that were swollen, red, and painful. My mom tells me that I crawled into the kitchen, mostly using my arms, sobbing in pain. My knees were more than twice their normal size and it was clear that something was very wrong. You can imagine how this would make any mother feel, of course. Here was her only child, healthy and happy just yesterday, in agonizing pain that she couldn't eradicate.
Pediatricians weren't much help. They suspected that I had been abused, or was having a bizarre allergic reaction to something (even after negative allergy tests disproved this theory). My parents were determined to get a diagnosis for me, however, and would stop at nothing. It helped that both of them were in the medical field - my dad was a cardiologist and my mom an EKG technician - and so they knew the sooner I got care, the better.
The orthopedist did x-rays, an MRI, all that fun stuff, and quickly realized that I needed to see a rheumatologist...which was much easier said than done. There is a terrible shortage of pediatric rheumatologists in the U.S., and the waiting lists to see these specialists are ridiculously long. We waited a couple months, and that was a short time. In fact I think it would be easier to get 5 minutes with the President than with a pediatric rheumy as a new patient. (From here on out, by the way, I'll refer to my doctor as a rheumy. Makes for a nice abbreviation.)
By the time I saw this rheumy, my symptoms had gotten worse. Now the joints in my fingers and toes were red and swollen as well as my knees. Looking back, I realize it was a blessing in disguise - my symptoms looked very "textbook", and my blood tests matched them. Diagnosis: Juvenile Rheumatoid Arthritis, also known as JRA. The more specific diagnosis was Polyarticular Juvenile Rheumatoid Arthritis, to give you a real mouthful. This name was just fancy doctor-speak for "more than 5 joints affected".
Today, the disease is known as Juvenile Idiopathic Arthritis, or JIA. The distinction isn't all that significant, but it does make one aspect of the disease quite clear: there is no known cause. Lots of studies have been done to look for a definite cause, but the word "idiopathic" means that a cause cannot be pinned down. Some studies emphasize a genetic component, others an environmental one, and still others some combination of both. At any rate there is no definite cause and, more importantly, no cure for the 300,000 children in the country with JRA.
Thursday, June 23, 2011
I promise I haven't fallen off the face of the Earth...
...I've just been very busy! :D I apologize for being such a terrible blogger to the point that it's been months since I've posted anything. I do have lots of ideas for upcoming posts, so not to worry. Check back in the coming days! :D
Friday, January 7, 2011
Taking a Red Pen to History
I’ve just learned from a recent Entertainment Weekly article that a new edition of ‘Huckleberry Finn’ is being published in which all usages of the “n” word are removed. They’re being replaced with the word “slave”, if you’re curious. Many people have already jumped to call this an act of censorship and/or have rolled their eyes at this obvious attempt to cater to those who value “political correctness”. I have to say that I wholeheartedly agree with both of these assessments. This is an act of censorship because I would be willing to bet that Mark Twain is rolling over in his grave at this version of his classic. The fact is that if he wanted to call black people slaves, he would’ve done so in the book’s original publication. Changing his language in the name of “updating” the book is not in keeping with the author’s wishes, and I don’t care if that author is alive or dead. In truth, he called black people “niggers” because that was the language used in that time period.
Yes, I did just type that. I almost can’t believe it myself, because I hate the “n” word. It is just as degrading, downright awful and simply unacceptable as any other racial slur. One of the worst things in high school was going around the room and reading passages of Huck Finn out loud, so that we were all forced to actually verbalize the word. It was offensive and it kind of burned your throat to say it, and of course this is still true today. Now, in the name of being politically correct, this edition of the book is being published so that the offensive word can be avoided, and I believe that nothing good can come of this. As terrible as it is, the word has to stay in the book and its meaning must be addressed.
How else will students learn about life in the South long before the civil rights movement? How else will students be able to fully realize the asinine point of view of the white slave owners who considered themselves far superior to any other race? Furthermore, once we start editing books in this way, aren’t we looking at a slippery slope? What would be next – editing Hitler’s speeches to Nazi Germany in which he called the Jews “vermin”, among other things?
This hateful speech has to remain in its original format and its historical context must be fully explained to modern readers. To me, history must be portrayed truthfully and realistically if it is to be meaningful. How are students to understand women fighting for suffrage and factory workers fighting for their rights and any other movement for change unless they know the conditions that led to that movement? Otherwise, we risk students memorizing a date and a few key terms in a textbook and forgetting it a week after the exam, bereft of any meaning.
Also, I would be remiss if I didn’t acknowledge the relevance that this novel still holds today. A friend of a friend had some wonderfully-phrased thoughts on this: “…All because some privileged people think their kids shouldn't be subjected to the word "nigger" when in reality the parents should not only be making sure the book stays around (it's considered one of the principle works of American literature for crying out loud), but making their kids get out in the world and see how that word is used today. The idea behind the word, the sentiment it carries forth, is still very alive today. This edited book shouldn't exist because it eliminates the learning about that sentiment and how it still affects America and the world - that's the point of the book that hasn't lost an iota of meaning since Twain put it to paper….We're nutering this book - it will no longer give birth to an understanding of American racism.” Indeed, I couldn’t have said it better myself, and I thank Daniel Edward Onley for articulating this thinking so well.
Here’s a related example based on my experience: In my sophomore year of high school, in a very small North Carolina town, we spent about 5 minutes discussing the Holocaust in my history class. (Not exaggerating, I timed the teacher). Then we simply moved on to the next event, as we were behind schedule and had to get through the Second World War before the next test…Now I ask, isn’t that ridiculous? Doesn’t that make you angry? “Oh by the way, millions of people were brutally killed and tortured because they were viewed as sub-human. Now on to the next item on the agenda!” Anyway, it sure angers me. The only way that any of my peers truly understood the Holocaust was through my English teacher in that same year. For her class, one of the assigned books was Elie Weisel’s ‘Night’, still one of those that I count as amazingly influential to me. By reading and analyzing this book, along with its historical context, the full meaning of the Holocaust and its relevance in the past and present became clear.
As soon as we start taking a red pen to history, eliminating those words and photos and events that make us squirm, we drain it of its meaning. How are we to learn from our mistakes and avoid repeating them in the future if we don’t truly know and understand our history? Let me end by quoting Mark Twain himself, “A person who won’t read has no advantage over one who can’t”. It’s so true – if we won’t read the stark truth of our history, we have no advantage whatsoever over an illiterate person.
Yes, I did just type that. I almost can’t believe it myself, because I hate the “n” word. It is just as degrading, downright awful and simply unacceptable as any other racial slur. One of the worst things in high school was going around the room and reading passages of Huck Finn out loud, so that we were all forced to actually verbalize the word. It was offensive and it kind of burned your throat to say it, and of course this is still true today. Now, in the name of being politically correct, this edition of the book is being published so that the offensive word can be avoided, and I believe that nothing good can come of this. As terrible as it is, the word has to stay in the book and its meaning must be addressed.
How else will students learn about life in the South long before the civil rights movement? How else will students be able to fully realize the asinine point of view of the white slave owners who considered themselves far superior to any other race? Furthermore, once we start editing books in this way, aren’t we looking at a slippery slope? What would be next – editing Hitler’s speeches to Nazi Germany in which he called the Jews “vermin”, among other things?
This hateful speech has to remain in its original format and its historical context must be fully explained to modern readers. To me, history must be portrayed truthfully and realistically if it is to be meaningful. How are students to understand women fighting for suffrage and factory workers fighting for their rights and any other movement for change unless they know the conditions that led to that movement? Otherwise, we risk students memorizing a date and a few key terms in a textbook and forgetting it a week after the exam, bereft of any meaning.
Also, I would be remiss if I didn’t acknowledge the relevance that this novel still holds today. A friend of a friend had some wonderfully-phrased thoughts on this: “…All because some privileged people think their kids shouldn't be subjected to the word "nigger" when in reality the parents should not only be making sure the book stays around (it's considered one of the principle works of American literature for crying out loud), but making their kids get out in the world and see how that word is used today. The idea behind the word, the sentiment it carries forth, is still very alive today. This edited book shouldn't exist because it eliminates the learning about that sentiment and how it still affects America and the world - that's the point of the book that hasn't lost an iota of meaning since Twain put it to paper….We're nutering this book - it will no longer give birth to an understanding of American racism.” Indeed, I couldn’t have said it better myself, and I thank Daniel Edward Onley for articulating this thinking so well.
Here’s a related example based on my experience: In my sophomore year of high school, in a very small North Carolina town, we spent about 5 minutes discussing the Holocaust in my history class. (Not exaggerating, I timed the teacher). Then we simply moved on to the next event, as we were behind schedule and had to get through the Second World War before the next test…Now I ask, isn’t that ridiculous? Doesn’t that make you angry? “Oh by the way, millions of people were brutally killed and tortured because they were viewed as sub-human. Now on to the next item on the agenda!” Anyway, it sure angers me. The only way that any of my peers truly understood the Holocaust was through my English teacher in that same year. For her class, one of the assigned books was Elie Weisel’s ‘Night’, still one of those that I count as amazingly influential to me. By reading and analyzing this book, along with its historical context, the full meaning of the Holocaust and its relevance in the past and present became clear.
As soon as we start taking a red pen to history, eliminating those words and photos and events that make us squirm, we drain it of its meaning. How are we to learn from our mistakes and avoid repeating them in the future if we don’t truly know and understand our history? Let me end by quoting Mark Twain himself, “A person who won’t read has no advantage over one who can’t”. It’s so true – if we won’t read the stark truth of our history, we have no advantage whatsoever over an illiterate person.
Saturday, January 1, 2011
Review of 'Tunneling to the Center of the Earth'
New year, new books to read! :D Here’s a review I did for my Young Adult Literature class on a book of short stories, 'Tunneling to the Center of the Earth'. Since there are so many stories, I’ve decided to just discuss on here the stories I found most compelling. I will issue the disclaimer that this book isn’t for the faint of heart. All sorts of real-life issues are brought up and (as in real-life) not usually resolved. On the whole, the book has a very “Southern gothic” flair a la Flannery O’Conner. Hope you enjoy, and I know you’ll be interested. :)
1. Title: Tunneling to the Center of the Earth by Kevin Wilson, ISBN: 9780061579028, New York, New York, 2009, $13.99, 208 pp.
2. Genre: Short Story/Fiction Grades 10-12.
3. Characters: The characters in each of these short stories are such that they stick in the reader’s memory, unlikely to be forgotten anytime soon. They are all unique and disturbingly true-to-life characters. Since they are impossible to describe separate from each story’s plot, I will discuss them in tandem.
4. Plot: First, we meet an older woman who is hired by families seeking a grandmother figure for their children. In many cases, the real grandmother is dead, dying, sickly, or just not a nice person. Our protagonist pretends to be the biological grandmother of the children, and puts on the act very well, complete with stories to tell the kids, photos of them on display in her house, and favorite foods to cook for them. After some fond memories are made her job is done, and she is “killed off”, in an effort to teach the children about death. At first she finds it easy to “disconnect” from each of her “grandchildren”, but when a unique family situation presents itself, she soon decides to quit the business. Next, we meet a young man who works at a Scrabble factory, sorting letters all day long in search of the elusive letter “Q”. He lives with his suicidal brother, he is in love with his neighbor’s daughter, Joan, and he is obsessed with the prospect of dying as his parents did, by spontaneous combustion. He quits his job in the end as well, determined to make a change in his life. In “birds in the house”, we meet a young boy who’s helping to carry out his dead grandmother’s last wishes. His father and three uncles are folding paper birds (a family tradition) as part of a contest to win the family mansion, and the boy watches as they all continue to fight with each other as they’ve always done. We never learn the winner of the contest, but the boy hopes that his grandmother is happy and at peace; we feel that this boy will break the pattern of his previous generations. Next, we meet three recent college graduates who are trying to delay entering the real world. They dig intricate tunnels underground and live there for months before finally surfacing and getting jobs. They always think fondly of their summer of digging, though, and feeling the soil makes them happy. In “the shooting man”, we meet a man who works at a noise factory and goes to see a magic show in which one man shoots himself in the forehead and supposedly lives. He is forced to sign up for the act himself, but wonders if he’ll make it out alive. Next, we meet a married man and woman who’ve just had a baby, born with a full set of teeth. The man is having an affair with another woman and finally leaves his family to travel to Europe with the mistress. Interestingly, this story is written in second-person, and it’s unclear if the “you” is meant to be a man or a woman. Next, we meet a sixteen year old cheerleader who feels very uncomfortable in her own skin. She starts a relationship with a boy four years younger then her who has obsessions with flying, fire, and this girl. After an accidental fire in which they both get burned, Penny discovers more about herself and learns to accept her uniqueness. In “the museum of whatnot”, we meet a woman who lives alone as curator of a museum filled with other people’s curious collections of junk. She doesn’t seem to want anything or anyone in her life, but by the end she has met a man who helps her realize that it’s okay to hang onto some things. Finally, we meet an insecure and slightly paranoid man who helps people determine the worst-case scenarios for their particular businesses or family lives. He is always the bearer of bad news with his job, but by the end he is willing to accept that other equally good outcomes are just as possible as the horrible ones. In sum, each story is tremendously unique and leaves the reader wanting more from this author.
5. Touchy Areas: There are so many different touchy areas in these stories that I wonder if I could get away with teaching this in a public school without lots of parents becoming very angry with me. Everything from suicide to drug use to homosexual scenes to extremely depressing family situations are all included. To avoid getting fired and/or scarring kids for life, I would only select a few of the more tame stories, such as “grand stand-in” (the story of the fake grandmother), to use in a classroom.
8. Evaluation: I greatly enjoyed this collection of short stories, and I would recommend it to anyone interested in some disturbing stories with a “Southern gothic” flair. The characters and their transformations are haunting, and leave you creeped out but wanting more. I see this as appropriate for people of all ages and backgrounds, and in a high school setting I believe that juniors and seniors would enjoy it the most.
As I said, in order to teach this book I would only select a few of the short stories, such as “grand stand-in” and “birds in the house”, to use in the classroom. I would teach them alongside other absurdist literature such as Flannery O’Connor’s A Good Man is Hard to Find (1955). I might also incorporate poems that go along with central themes in the stories, such as A Dream Deferred (1951) by Langston Hughes. Other works, such as absurdist artwork like The Fountain (1917) by Marcel Duchamp, would be perfectly applicable as well.
I would rate this book a 10 out of 10, and will be one of the first people to buy Kevin Wilson’s novel next summer.
1. Title: Tunneling to the Center of the Earth by Kevin Wilson, ISBN: 9780061579028, New York, New York, 2009, $13.99, 208 pp.
2. Genre: Short Story/Fiction Grades 10-12.
3. Characters: The characters in each of these short stories are such that they stick in the reader’s memory, unlikely to be forgotten anytime soon. They are all unique and disturbingly true-to-life characters. Since they are impossible to describe separate from each story’s plot, I will discuss them in tandem.
4. Plot: First, we meet an older woman who is hired by families seeking a grandmother figure for their children. In many cases, the real grandmother is dead, dying, sickly, or just not a nice person. Our protagonist pretends to be the biological grandmother of the children, and puts on the act very well, complete with stories to tell the kids, photos of them on display in her house, and favorite foods to cook for them. After some fond memories are made her job is done, and she is “killed off”, in an effort to teach the children about death. At first she finds it easy to “disconnect” from each of her “grandchildren”, but when a unique family situation presents itself, she soon decides to quit the business. Next, we meet a young man who works at a Scrabble factory, sorting letters all day long in search of the elusive letter “Q”. He lives with his suicidal brother, he is in love with his neighbor’s daughter, Joan, and he is obsessed with the prospect of dying as his parents did, by spontaneous combustion. He quits his job in the end as well, determined to make a change in his life. In “birds in the house”, we meet a young boy who’s helping to carry out his dead grandmother’s last wishes. His father and three uncles are folding paper birds (a family tradition) as part of a contest to win the family mansion, and the boy watches as they all continue to fight with each other as they’ve always done. We never learn the winner of the contest, but the boy hopes that his grandmother is happy and at peace; we feel that this boy will break the pattern of his previous generations. Next, we meet three recent college graduates who are trying to delay entering the real world. They dig intricate tunnels underground and live there for months before finally surfacing and getting jobs. They always think fondly of their summer of digging, though, and feeling the soil makes them happy. In “the shooting man”, we meet a man who works at a noise factory and goes to see a magic show in which one man shoots himself in the forehead and supposedly lives. He is forced to sign up for the act himself, but wonders if he’ll make it out alive. Next, we meet a married man and woman who’ve just had a baby, born with a full set of teeth. The man is having an affair with another woman and finally leaves his family to travel to Europe with the mistress. Interestingly, this story is written in second-person, and it’s unclear if the “you” is meant to be a man or a woman. Next, we meet a sixteen year old cheerleader who feels very uncomfortable in her own skin. She starts a relationship with a boy four years younger then her who has obsessions with flying, fire, and this girl. After an accidental fire in which they both get burned, Penny discovers more about herself and learns to accept her uniqueness. In “the museum of whatnot”, we meet a woman who lives alone as curator of a museum filled with other people’s curious collections of junk. She doesn’t seem to want anything or anyone in her life, but by the end she has met a man who helps her realize that it’s okay to hang onto some things. Finally, we meet an insecure and slightly paranoid man who helps people determine the worst-case scenarios for their particular businesses or family lives. He is always the bearer of bad news with his job, but by the end he is willing to accept that other equally good outcomes are just as possible as the horrible ones. In sum, each story is tremendously unique and leaves the reader wanting more from this author.
5. Touchy Areas: There are so many different touchy areas in these stories that I wonder if I could get away with teaching this in a public school without lots of parents becoming very angry with me. Everything from suicide to drug use to homosexual scenes to extremely depressing family situations are all included. To avoid getting fired and/or scarring kids for life, I would only select a few of the more tame stories, such as “grand stand-in” (the story of the fake grandmother), to use in a classroom.
8. Evaluation: I greatly enjoyed this collection of short stories, and I would recommend it to anyone interested in some disturbing stories with a “Southern gothic” flair. The characters and their transformations are haunting, and leave you creeped out but wanting more. I see this as appropriate for people of all ages and backgrounds, and in a high school setting I believe that juniors and seniors would enjoy it the most.
As I said, in order to teach this book I would only select a few of the short stories, such as “grand stand-in” and “birds in the house”, to use in the classroom. I would teach them alongside other absurdist literature such as Flannery O’Connor’s A Good Man is Hard to Find (1955). I might also incorporate poems that go along with central themes in the stories, such as A Dream Deferred (1951) by Langston Hughes. Other works, such as absurdist artwork like The Fountain (1917) by Marcel Duchamp, would be perfectly applicable as well.
I would rate this book a 10 out of 10, and will be one of the first people to buy Kevin Wilson’s novel next summer.
Subscribe to:
Posts (Atom)