MOVING TO WORDPRESS

Dear wonderful readers,

Due to frustrations in dealing with blogger and its constant crashes, I have moved my blog to wordpress. My apologies for the inconvenience this may cause you. Hopefully the new blog will be even better. I write this post because I know some of you use RSS readers and never actually visit the original blogger page. The blogger page will automatically redirect to the new page:

http://gradstudentwithlupus.wordpress.com/

Thank you lovely readers! I hope you all follow me to the new page.

love,
SR (gradstdntwlupus)

Invictus

Even as I write this, I am sitting on an airplane. Sometimes the urge to write overwhelms me, and I just cant resist. So here I am, blogging away on an airplane when I should be resting. (I’ll date this entry by whenever I post it, which might be a few days out as I’m unsure about my internet connection for the next few days.)

Anyway, let me get to the point. I just finished the movie “Invictus,” starring Morgan Freeman and Matt Damon, directed by Clint Eastwood. Now, as far as I’m concerned, you would REALLY have to screw up a movie for it to not be worth watching with those two cast in the leading roles. True to form, I was awed. Bedazzled. Amazed. (wait, are those synonyms?) The story is about how newly elected president, Nelson Mandela, united with the captain of the South African rugby team to use rugby to unify the country (and win the rugby World Cup). The movie was fantastic. You learn about Mandela and his philosophy, you learn about what South Africa was like when he became president, and you watch how rugby brought them together. Of course, that was by no means the end of the struggle, but tell me you didn’t tear up a little as you watched some Afrikaaner police officers go from suspiciously eying a skinny black boy to watching them hug the kid and cheer, and I’ll strongly suspect that you’re lying. If you haven’t seen the movie, definitely get on it immediately. WAIT – I meant AFTER you finish reading this post, goodness!

I am generally a fan of the heart-warming, sports underdogs beat the odds type of movie. I’m especially fond of the ones that talk about underlying social issues like “Glory Road” did.  Still, heart-warming is supposed to be theoretical, but I find that there are certain books and movies that actually manage to warm my heart. I’m sitting here feeling like my soul is glowing or something. Now, HIV debacle aside (the redemption for which I believe he has worked hard to achieve), Nelson Mandela is very, very high on my list of heroes. I had the honor of hearing him speak a couple months ago. Believe me, he has every bit of the presence you think he will. So that is probably part of why I’m feeling so inspired right now, but it isn’t the only reason.

As I watched the movie, I started thinking about heroes. It’s such a common question that we ask. Even little kids have a hero, be it superman, their mothers/fathers or a favorite sport celebrity. Still, I think we often forget that heroes don’t have to be famous. Don’t get me wrong Mandela is definitely one of my heroes, but I think we meet a lot of heroes in our every day lives that generally go unacknowledged. The parent that devotes her time to coaching her kid’s baseball team... The man who gives up his holidays to celebrate with people who don’t have families at the homeless shelters and soup kitchens... The people who devote their lives to the betterment of others – in hospitals, in schools, in neighborhoods... They are all heroes, and so is every person fighting a chronic illness. They are inspirations to everyone else fighting similar battles every day. This is hardly a new sentiment. In fact, I think if you watch the Twitter updates of the chronic disease community, you will see at least one post stating the same thing every few hours or so at the very least.

Now, dear readers, I’m sure you are very anxious for me to wrap up this post so I can free you to search for this movie. So let me get to my point. It’s a pretty interesting circle if you think about it. You tell persons A, B, and C that they are heroes because they find the strength to fight these illnesses. Meanwhile, persons A, B, and C turn around and tell you the same thing, but you don’t really believe them. So why can’t we acknowledge that we are heroes too? Why must hero-worship always be an outward love? You are your own temple, right? Ok, so maybe the problem is that it sounds a little self-centered. How can I sit around thinking about what a big hero I am? After all, if a kid answered “Who’s your hero?” with “I am!” they would probably be subject to a lesson on what a hero is followed by a reiteration of the question until they reported a more “appropriate” answer. But I think it’s a truth worth acknowledging. It’s not enough to help other people get through their days by reminding them how amazing they are. We must also help ourselves by acknowledging that if they are heroes for what they go through then logic dictates that we are heroes too. Everyone is interconnected, one can’t rise up without the other. In order to help me fight my battle, you must be strong enough to fight yours first. (I’m reminded of the airline safety videos: Please put on your own mask before assisting others!) So the next time you are raising someone’s self esteem with compliments like these, take a moment to remind yourself: you are a hero too.

Sunday Breakfast Club: CNN – Can Caring Make You Sick?

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 meant to write about this last weekend when this article was a little more recent, but the “Lady Gaga + lupus (?)” topic overtook it. There was a CNN article on May 20^th called "Can Caring Make You Sick?" 
I think the effect our illnesses have on our loved ones are easy to forget about (I wrote a thank you post a few weeks ago). I’m not saying we’re selfish, by any means. It’s just that it’s easy to get caught up in the daily tedium of it all. I mean, look at all the things we have to think about every day: first we have to remember to rank priorities so we can allocate spoons, then we have to deal with everyday cares, cook (if we can manage) and eat meals, many of us have multiple med times, and all of this is on top of the debilitating fatigue, pain, stiffness, etc. When and how do we fit work/school into this madness? Well, your guess is as good as mine. Still, it’s no wonder that we rely so heavily on the loving friends and family we have in our lives.

Our strongest supporters are often the people most subjected to inadvertent abuse. Our anger and frustration at our disease (and at rude people who don’t understand) often gets misdirected at them just because they’re around when we’re on the warpath. The reward for their efforts to understand what we are going through is often a derisive, indignant “you don't understand!” They take on extra stress and work to make up for the stuff that we can’t do. And, it would be unfair to forget that they worry to no end. I’ve seen my sister cry after spending the night at my place and seeing what my joints are like after I left them to their gelling ways all night long. My mom spends all her free time researching my diseases and learning about treatments. I worry about them when I see these things. I do, of course I do.

Yet, until I read this article, I was worried about my supporters’ emotional health, but never to the extent that this article suggests I should be. I think I always wrote off caregiver health problems as limited to the people who are always lifting or physically supporting their loved ones. I didn’t realize it could have this kind of impact. Or, maybe, it turns out that I am a little selfish after all, and I just didn’t want to think about it because I just don’t have the energy. The fact is, it’s not just their emotional and physical health that takes a direct hit. They often put their lives on hold in order to help us with the things we need help with all the freaking time.

I don’t want to be that person, so this week I’m trying to find ways to help relieve the stress on my caregivers. They don’t have to be big gestures, but maybe little things would really help. So far, I’ve come up with simple things like calling them to tell them I’m having a good day instead of only when I’m having a terrible day and need to cry about it to someone. Also, some tasks aren’t as important as others, but they may not know that. So I think when I call in favours, I can be clearer in terms of what I really need help with ASAP and what can just wait until they have time. Most importantly, I think I’m going to try and give them days off once in awhile. Something along the lines of, “I’m ok today, why don’t you go out shopping with your friends?” I don’t know if they’ll do it, but at least I can try to promote that they have a healthy social life even if often don’t. I don’t know if these things will help, but a girl can hope.

So how about you, readers? What do you currently do to help take some of the stress off of your loved ones? 

Sunday Breakfast Club: Lady Gaga and the Awareness Issue

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

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

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

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

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

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

How can we do this without wishing the disease on anyone in the first place? How do we balance the need for increased awareness (especially of the level which can only be gained with celebrity help) and still respect their right to privacy?

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

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

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

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

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

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

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

One Rough Week

Man, it has been one ROUGH week. I had a great weekend last weekend. I spent it with my cousins – their grandparents and aunt (and her son) were in town, so it was a full house. It was fantastic. Good food, the feeling of family, exceptional.

Then came Monday. I thought Monday would be good  - I had a great weekend with lots of sleep and healthy food. No such luck. Monday was brutal. I could only manage to crawl out of bed to use the bathroom – and that too only when I had to pee so badly I couldn’t hold it in anymore. Tuesday was not much better. The fibromyalgia pain seems to be getting worse and worse, it feels like every muscle is on fire but not on fire.. maybe pins? It’s hard to explain the pain. My joints – even the ones that aren’t very swollen from the lupus flare up – HURT. A lot. It just seems to get worse and worse.

The only reason I dragged myself out of bed on Wednesday was that it was a really bad day of school to miss. Some things can’t be made up, so I went. I ran into my doctor that day – he didn’t look pleased at the sight of my joints, but said he hoped the Lyrica (pregabalin) kicks in soon… but it ended up being a 12 hour day. And I hadn’t started studying for my test on Thursday. Which meant 3.30am bedtime and only 4 hrs of sleep. Then Thursday was another 12 hour day.

I COLLAPSED into bed. I slept for 8 hours, but then had a 3.5 hour class today – the kind where you’re watching a procedure and there was nowhere to sit down. I’m sure you can just imagine how much fun that was. My poor bed must be wondering why I never get into bed anymore. I just collapse onto it like my knees have buckled. I feel like someone beat me up with a baseball bat. And after 3.5 hours on my feet (plus the 15-20 min walk in the heat each way) I feel like I did before I slept for 8 hours. I feel like I didn’t sleep at all. Ughhhh.

I have lots of studying to do this weekend, but when will I catch up on sleep?! Sigh. I hope next week calms down a little, because this can’t continue…

A Letter to My Loved Ones

Thanks goes to Birdie Nelson at ChronicBabe Forum for sharing this letter.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or call me on the ’phone sometimes I probably don't seem like much fun. But I'm still me - stuck inside a body which doesn’t work as it should.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick continuously for months now. I can't be miserable all the time - In fact, I work hard at not being miserable.

So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal.

Please understand that being able to eat normal food/sit down/walk sometimes doesn't necessarily mean that I can eat normal food/sit down/walk all the time. Just because I managed to eat normal food /sit down/walk yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. The same thing applies to time spent having a social life. Even more so for my ability to concentrate, as my brain gets foggy.

Please understand that a chronic health condition is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying or even thinking; "But you did it before!" or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me a lot worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct - if I was capable of doing some things, any or all of the time, don't you know that I would? I am working with my doctor and I am doing everything I can to manage the situation.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic health conditions can affect the whole body, or as in my case be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense and long. You can't always read it on my face or in my body language. Also, chronic health conditions may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to stand up/sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. A chronic health condition does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. In all likelihood, if you've heard of it or tried it – then so have I! In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic health condition, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic illness. If something worked, we would KNOW. It's definitely not for lack of trying.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. A chronic health condition is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to travel ... You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss although I fully intend to undertake them again, just as soon as I am able.

Thank you for listening. It really does mean a lot.

Sunday Breakfast Club – Happiness is Taking Things as They Are

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.

(image from Tumblr.com)

I wish I could remember where I came across this picture the first time. I saw it somewhere approximately a week ago and over the course of the week it got under my skin. It’s become my theme of the moment, a thought that gets me through the day.

There are things that I can’t change. I can’t change my diagnosis. I can’t change its symptoms or the side effects of its treatments. When I say side effects, I mean all the side effects not just the medical side effects like weight gain. I mean the life side effects too. The results of hours and hours spent in bed: the effects on my grades and my relationships. Hobbies I can no longer really engage in. Experiences I don’t know if/when I’ll ever be able to enjoy again – hikes and so on.

I realized that if I spend all my time wishing things were different, I’d never really be happy. There are a million things that I wish I could change but can’t. Of course, this shift in mindset doesn’t change in a day. So I set the picture on my desktop and phone backgrounds as a constant reminder.

On the flip side, is choosing to just accept these symptoms akin to giving up on fighting them? Maybe railing against the disease’s suppressive effects is a psychological boost that helps my body fight this monstrosity. (see related post)

Thoughts? 

Pain is a Funny Thing

Pain is a funny thing. It pervades our daily existence more than we might realize. We talk about physical aches and pains like headaches, stubbed toes, and paper cuts. We talk about the emotional pain that comes from unhappy life circumstances. Countless poems, plays, screenplays and books have been written about emotional pain related to love in particular. Make a trip to the self-help section of a bookstore looking for books about having a happy (read: painless or at least pain-minimized) emotional existence and you’re unlikely to come out empty-handed. Society is obsessed with dealing with emotional pain, because most humans understand these types of pain. We know what it feels like and we don’t like it one bit. Chronic pain is whole ‘nother ball game, but we’ll get back to that in a minute.

Overall we consider it a bad thing, right? If you hear someone is eliciting self-inflicted pain, the societally-programmed impulse is to worry – and to judge. We have medical specialities that specifically deal with minimizing pain. But pain has an incredibly important evolutionary role. Pain helps us to learn – especially as children – which things are dangerous and should therefore be avoided. The fact is, while we may all experience pain, science doesn’t really understand it. Sure, we can talk about certain types of nerve fibers and which parts of the brain are active when we’re in pain. From an emotional perspective we have psychology versus psychiatry – and, of course, all different camps of different theories within them.

Still, we know it’s important. Many medical professionals consider it one of the vital signs that should be collected from each patient. I once heard two professors debate whether the pain scale should be 0-10 or 1-10. On mics. In front of the class. (The argument being that doesn’t a score of 1 imply that you have some pain? So people with no pain should be able to rate their pain at 0.) And, yet, how can we understand what other people are going through when different people perceive the same pain-causing stimulus to cause different levels of pain? An 8 on the pain scale for me might be a 4 on the pain scale for you. We all perceive it differently, and then we deal with it differently too. And both perceptions and coping abilities adapt when we keep dealing with pain over and over. There’s no magical formula for it. What works for me probably won’t work for you and vice versa. But I think the key to learning to deal with the pain is to understand that while everyone might not be able to understand what it’s like to be in pain all the time, pain really does pervade our existence. We can’t escape it any more than we can escape ourselves.

So where, in all of this, does chronic pain fit in? Well, chronic pain - perhaps because of its inherent chronic nature – is both physical and emotional. To put up with chronic pain for so long is stressful on the mind. It’s a daily frustration, and most of the time people don’t even realize that you’re in pain. Even if they do realize that you’re in pain, they really can’t fathom what it’s like to always be in pain. Without that perception, they can’t gain full understanding.

So, to recap... First we deal with the constant physical pain. Then we deal with the emotional pain that it causes. Then we deal with the fact that nobody gets it. (Relax, I’ll spare you the what doesn’t kill you makes you stronger speech.) I think what it comes down to is realizing that pain has a purpose. How much pain my joints are in often tells me when I’m heading into a flare up or that I’ve been overdoing it lately. We can resent it all we want, but in a chronic illness it does occasionally have it’s moments of usefulness. Still, in learning to live with the pain, I think it’s the emotional pain that is hardest to deal with. But deal with it we must, because otherwise how would we have the emotional strength to deal with the physical pain?

Nevertheless, chronic pain doesn’t fit into any of those points, does it? It’s not serving an evolutionary purpose, it’s not a warning signal about health status, it’s not anything really useful at all. It’s just, well, PAINFUL.

Lupus, Me and the Fibromyalgia Makes 3.

I just got back from an appointment with my rheumatologist.

He advanced the prednisone taper a little. Yay! The rest of the news wasn’t as much fun to hear. He thinks the methotrexate just hasn’t had time to work yet, so he didn’t mess with that except to split the dosage over two days to try and relieve some of the dizziness I get with it.

Then he added pregabalin. He thought I might be developing fibromyalgia the last couple of appointments and even tested for the fibromyalagia points two weeks ago but only one was mildly tender. This time almost all the points he checked were very tender. He said a lot of people with SLE develop fibromyalgia. Apparently amitriptyline is also very effective for fibromyalgia pain (and much cheaper) but it takes much longer to kick in. Since it's developing so quickly, he said its better to give the pregabalin, because in his experience getting the fibromyalgia under control faster seems to lead to it going away as the flare up fades more often.  (As opposed to still having the fibromyalgia once the flare up clears up.) … so, fingers crossed!

Sigh. Will it never end?

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

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

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

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

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

An exchange between 2 doctors:

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

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

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

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

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

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

An Apology and a Thank You

You know, I spend a lot of time venting about the people out there who make rude comments out of ignorance (cases in point: rant 1 and rant 2). Still, it seems that the people who suffer from these experiences and my resulting mood swings are the people who support me day to day not the people who elicit the feelings in the first place.

Sometimes my frustration at my symptoms and the world’s treatment of me because of them leads to an outburst at someone I love. Someone who only means well, but inadvertently triggers the suppressed annoyance at a bazillion other things and people.

So today I wanted to tell them that I'm sorry that happens as often as it does and I’m truly thankful for all that they do: the supportive words … the check-ins … the meals cooked … rooms cleaned … loads of laundry done when I just couldn’t muster the energy … outbursts tolerated … and, most importantly in my mind, the time spent just being there – without needing to comfort and console.

Chronic illnesses often lead to lost friendships, but they show you who your real friends are. They are there when you need them. No matter who they are or how old they are. No matter where in the world they are. No matter whether you’ve ever actually met them.

xoxo

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 I 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… 

Sorry, Sir, “Damsel in Distress” Just Isn’t Working for Me Anymore

[This post was featured in ChronicBabe Blog Carnival #3: Learning to Live With Pain.]


If you walk into the hospital room of a child with cancer, I’m sure you’d see all the things you would expect to be there – IVs, medical charts, beloved toys and evidence of amazing caretakers who rarely leave the child’s side. You might breeze over the drawings on the wall – after all, a child living in the hospital doesn’t have a fridge to proudly display them all. You’d be amiss in not taking a closer look. Look for a monster or some other unrecognizable creature amongst the pictures of houses and family and friends and pets. Look for the picture of the cancer.

Children are often taught to visualize their diseases, to draw a picture and stick it on the wall so they have a mental image of the enemy they’re fighting. I don’t know why they don’t tell adults to do this. Maybe they think we’ll be offended that it’s too juvenile. Maybe they assume that we’re old enough to deal with our pain on our own, I don’t know. I, for one, think it’s a very useful tool.

To me, my illness, and my pain, is like a dragon. The kind of irritating one in fairy tales that is always defeated but never killed. The kind that invariably returns to torment the village again another day. The kind that nobody can seem to get rid of. The problem with a chronic illness, I’ve found, is that after you’ve been fighting that dragon over and over and over and over ... it’s the same battle and it’s gotten old. How many times can you fight the same battle? After all, it’s not like you’ve got a new weapons arsenal or some gloriously juicy intel on the dragon’s inner workings to use against it.

It’s so easy to get frustrated with fighting the dragon that we go, "ok fine, I’m just going to sit back and let somebody figure out how to get rid of this monstrous thing and come save me from it’s evil ways." It’s often easy to fall into a damsel in distress type syndrome. I sure did.

... but I’ve come to realize that this doesn’t really make sense. After all, it’s me against my disease. My dragon isn’t attacking from some cave somewhere – it lives inside my own walls, it turns my own best defences against me.  Damsel in distress makes for a good fairy tale (who wouldn’t want to be the beautiful princess without the moon face and weight gain courtesy of our favorite champion of choice, Sir Prednisone himself), but it doesn’t make for a good reality. If we stop fighting, the dragon wins. Because we’ve forgotten that there’s one thing the dragon can’t touch – and that’s our emotional state. We can fight the physical attack with the physical medications, but our mind is our own and therein lies our advantage.

So I’ve decided that I’m not the damsel in distress in my fairy tale. Instead, I get to be the noble, marauding knight in shining armour. Historical clichéd roles be damned, this is MY fantasy! So off I go, mental shield up, sword at the ready (well maybe a plastic one, because I think trying to swing around the heavy metal ones would probably make my joints pretty angry) to fight the dragon that pervades my existence. 

Why did I start blogging? A re-think.

This blog post was inspired by a post by Leslie on her blog, Getting Closer to Myself, called “Time Is A Luxury We Don’t Have.” Thank you for the inspiration!

Since I read that post, I have been thinking a lot about why I started this blog. I think one of the main reasons was to help inform the families and friends of people suffering through lupus and similar illnesses what it's really like.

In a sense, I guess I'm not worried that people will forget me so much as they will forget my experiences - and that includes me. Between the lupus fog and the fact that memories fade or change with time, I would never be able to give as accurate an account of what today was like as I can today itself.

What we experience is important. The day to day struggles are as key a part of our illnesses as the lab tests and medications and so on. If we let people forget our experiences, it's almost like they forgot us - because without an understanding of what we're going through, they can't completely understand who we are.

That being said, I do wonder if people will remember me… and if they do, how will they describe what they remember? Will they remember me as the girl that was sick all the time? (Or, as was implied by a rather rude classmate the other day, “say I’m sick [because I don’t look sick].”) Will they remember me as someone who started a program with them – but was gone so much they can’t remember if I finished it with them too? So many people don’t even know that I’m ill – I wonder what their opinions would be – and how they would change if they knew how ill I actually am.

I guess there’s really no way to know these things. In general, I’ve found that people react in three main ways.

1. they freak out and disappear
2. they freak out about how they had no idea and try to become as helpful as possible (sometimes almost overly so)
3. they pretend like they never gained this knowledge and nothing has actually changed

I’ve just slowly started sharing this blog with people that actually know me personally in the old-school, non-internet sense of the word. I guess I’m a little scared to see their reactions, because so few people have actually heard about my illness with the kind of frank honesty that I’m more willing to put down in words here. In opening myself up to them that way, I’m changing their opinions of me and only time will tell how that will affect our friendships – and, ultimately, how  they remember me.

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…

Another Appointment Coming Up

Now, as much as I know that my doctor is my ally, I have to say I’m dreading my appointment on Tuesday. The methotrexate hasn’t kicked in so far, and the increased prednisone may be helping the joints but it hasn’t made an impact at all on the fatigue.

Sigh. Do you ever feel like going to the doctor never brings anything but bad news your way? It feels like each time I go all that happens is that my med dosages go up or new meds get added on.

I think at this point I guess I’m getting scared that my doctor will tell me I need to take a leave of absence from my program, and I’m really not ready to do that yet… but then, how often does lupus leave decisions like that up to me, right? 

“ … all you can do is try to know who your friends are before you head off to the war … ” - Regina Spektor, “The Call”

In theory, it’s a nice sentiment, right? But if you’re fighting a chronic disease, it really doesn’t work that way. It seems to me that you find out who your friends are when you’re about six months into a bad flare up. This may seem counterintuitive, but bear with me for a minute. When a flare up first hits, people can often tell that you are distinctly ill. There is a significant difference between remission (or, at least, under control lupus) and the onset of a flare up… people worry. They ask after your heath, if they can help with anything, and so on and so forth everyone is very understanding and sweet. They understand that you’re ill – if you haven’t been too ill for too long, it’s not different from a bad bout of the flu or something that they can at least vaguely relate to.

But then you never seem to get any better. As the doctors mess with your medications. As you battle daily with the flare up symptoms, the side effects of the increased medications, and the frustration and depression that inevitably come hand-in-hand with such debilitation ad nauseum (from the duration not the meds!) ad infinitum. After awhile people just don’t understand anymore, try as they might. They don’t know what it’s like to suffer through that. They can try to imagine, but let’s face it – is it anything like what you would have guessed before you were diagnosed? You probably wouldn’t have even come close. Plus, as you get further into a flare up, some of the symptoms decrease a little, and you ramp up your tolerance so you can get through each day. The problem is, you’re often back into the dreaded “but you don’t look sick!!” zone. Don’t get me wrong. I don’t mean to say that people lose interest, or that they choose to be less supportive or anything of the sort. I think they run out of things to say. They don’t know what they can do to be helpful anymore, so they back off. It doesn’t help that you have good days and bad days – how can they even tell if you’re ill or not or what the heck is going on?

Here’s the real kicker, though. It’s not just that they wander away. You tend to disappear from their lives. No longer do you have the energy or the ability to make it out dancing and partying every weekend. And with all the time you need to spend in bed and nursing your joints, etc, etc, etc, you really need all your awake time (even more, let’s face it) to get the work done that needs to get done every day. So there go the brunches, the after work drinks, the long coffee shop chats. How many times can you decline an invitation before people stop inviting you?

Well, maybe there isn’t a very good answer for that… but at the end of the day it depends on your friends. The friends that are worth keeping around haven’t disappeared when you start to transition back into the outside world. They’re the ones that checked in on you from time to time, or, at least, welcomed you back with open arms - even if you seemed to appear and then vanish again as the flare up roller-coaster-ed around. A true friend is still a friend be it 6 days or 6 months later.

As I make my own way slowly back into the real world, I’m discovering that many of my friends have kind of phased me out. Now I realize that they wouldn’t do this on purpose, but the fact remains that conversations are now awkward. And if I want to join the fun, I have to invite myself along. It’s really frustrating to finally reach a point when you have time and energy again only to discover that nobody seems to remember you exist anymore… With my family far away, my friends were all I had. Turns out that wasn’t really the case. It’s undeniably a pretty crappy situation. Not having any friends definitely does not make this disease easier. You need supportive people. So thanks to my readers, because it helps more than I can tell you to know you are out there! … but it doesn’t change the fact that I’m sitting home alone on a Friday night.

But let me clarify, the point of this entry wasn’t (entirely) to gripe about that fact, it was to point out that it’s easy to dwell on the many, many negative aspects of a chronic disease. But there is an elusive benefit that you might not realize. I certainly didn’t. There’s no better way to know who truly cares about you than to actually need them to care. A good friend won’t let your disease come between you. You may not know who your friends are going into the battle, but definitely will by the time you come back out.

More Meds. Joyous.

I had a rheumatologist appointment yesterday. Things were not going well. My prednisone taper had me feeling great in February, but then when the dosage dropped in March, my symptoms started coming back. The fatigue. The swollen and painful joints. Etc. Etc. Etc. It was terrible. This week was just brutal. I learned my lesson on Monday and stayed in bed except for my appointment.

My rheumatologist was worried. Now I love that man, he’s such a darling, and I’ve never seen him visibly worried. This was something new. He said this meant that the hydroxychloroquine hadn’t kicked in yet. That February was good because the prednisone was masking the symptoms not because my flare up was dying down. So he raised the prednisone back up to February dosage. He said there were a few options we could try in addition:

1. wait for hydroxychloroquine to work – not feasible because I can’t manage school with these symptoms and he doesn’t want to put me on anti-inflammatory meds like naproxen because apparently lupus has a tendency to take a sudden turn for the worse here in the tropics compared to America and they mask the symptoms so I might not realize it
2.  switch to chloroquine – it’s stronger than hydroxychloroquine, but this increases the risk of eye damage and leaves the issue of switching back to the hydroxychloroquine at some point
3. so he settled on the last option. Methotrexate. (and the accompanying folic acid)

I have to go back in three weeks so he can re-evaluate. It’s just so frustrating. Just when it seemed I was on the road to kicking this flare up, it turns out I’m nowhere close. Plus now I have additional side effects. I was so nauseous and dizzy all day today (first weekly dose of methotrexate this morning). I was scared that he was going to do something like this, and I was so tempted to lie and say all was well. I’m so tired of the weight gain and the restless legs and the moon face. But in the end I did the right thing and told the truth. I had to remind myself that my health is more important than my body weight.

The Little Engine that Could (but should it?)

Today was one of those days. You know the kind. Those days when you know the smart thing to do is to stay in bed, but you have important stuff to do, and you just can’t be wasting your day in bed. Those are days when you are miserable from the pain all day long, and spend it cursing yourself for your stubbornness. I had one of those days today.

I woke up this morning with my knuckles looking like walnuts and my knees looking like melons. Everything hurt, and it wouldn’t have been the end of the world if I had missed class today. Yet, I insisted on getting myself out of bed. I told myself that I was forcing myself to go because I really needed to learn from class discussions and because I didn’t want to add yet another test to the growing list of exams I needed to make up. Well, mind over matter, I ended up at school.

10 hours later I returned home and collapsed into bed. As I slowly woke up a few hours later and lay in bed stretching and trying to get my joints loosened enough to get up and eat dinner, I started thinking about this morning’s decision. Why did I REALLY get out of bed beyond my better judgment? Why do we do this to ourselves when we know we’re stretching beyond our limits and we know the consequences? I didn’t want to be the unreliable student who was out sick AGAIN. I was worried that they would think I’m crying wolf. I was sick and tired of needing to stay in bed in the first place.

My whole life, every time I was discouraged, my parents would remind me of the children’s story of the Little Engine that Could. It’s been so ingrained in me to force myself to get where I need to go that I just force myself to get there. There are days like today that I dig down and remember that story and my parents encouragement and get myself where I need to go. Or, at least, where I think I need to go. The question is: should I be going there? Just because I can force myself to do it, is it really the best decision? Maybe sometimes the Little Engine that Could should choose not to. 

Whatever Happened to "just the flu" ??

[Disclaimer: Anyone in the public health world would point out that there is no such thing as “just the flu,” and that the next major flu pandemic could happen at any time. Duly noted.]

The flu has been going around my class. Now, most people who caught it were out for a day or two. They hydrated. They slept. They came back renewed and ready to face the world. Meanwhile, I was out sick for a week. And I’m still sick. And all I’ve done is sleep. And sleep. And sleep. My joints have been so swollen this was the first time I managed to so much as type.

I know this post is going to sound like I’m whining, but it I am just so frustrated with (and since I promised honesty – jealous about) how unbelievably ill I am when everyone else quickly recovered. The virus just amplified the flare up symptoms. I made it to school today because I hate missing out but by the end of the day I had to collapse into bed. I didn’t manage to change or get under the covers. And to top it off, my professor tracked me down and asked why I did so badly on the quiz today. I told him that I was out with the flu, and his response was an arched eyebrow followed by, “Ah, yes. Quite. ... I thought that was going around LAST week.”

Honesty at the Outset

I want to begin by stating that I will try to be as honest as possible as I write this blog. I am starting it with the hopes that it will not only help me connect with other people in my situation, but will also help the family and friends of people with lupus understand what their loved ones are going through. That being said, I'm sorry to say that I will do my best to keep my identity under wraps. The sad truth is that lupus isn't a disease I want all my classmates and future co-workers, bosses, etc to know I have. I know this makes it sound like I am ashamed of my diagnosis, but that isn't the case at all. Rather, I worry about the judgment they might make of my capabilities. Unfortunately, they may be right at times. Lupus isn't a disease that allows for consistent work ethic, let alone late hours and early mornings. It doesn't mean that I won't be a diligent worker, but I don't want them making assumptions about my capabilities before they even meet me. More over, I would like to retain my right to privacy about the state of my health.

I was first diagnosed at 16, when I was a university student. It was a long process to diagnosis. I was passed around from doctor to doctor. Through many tests, possible diagnoses, and prescriptions - some of which badly reacted with each other. I was in and out of the hospital throughout it and the trial is pretty clearly depicted on my grade transcripts. Professors weren't very understanding and it never occurred to me to take some time off. I haven't had a flare up in over 5 years, and was generally considered in remission by my doctor. This meant no meds, rare check ins, and generally I was almost able to forget I had lupus at all were it not for the residual joint pain and swelling I still experienced.  

I am now a graduate student, who is finding that it is quite a struggle to fight a lupus flare up and stay in school. I can't afford to take time off, but staying in school (i.e. not failing out) is not an easy task on its own let alone with an active flare.  I'm lucky that its not hitting my kidneys, but that doesn't make it any harder to live with. To be honest, sometimes I think my friends actually have a harder time understanding it precisely because of that though. I just don't seem ill to them. When the doctor told me that I was, indeed, having a flare, he told me that I would have to relearn my limits. He said that while I might think that I remember how bad it can get, I probably don't. He was right.