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Friday, April 30, 2010

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.

Wednesday, April 28, 2010

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…

Sunday, April 25, 2010

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? 

Monday, April 19, 2010

“ … 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.

Friday, April 9, 2010

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.

    Monday, April 5, 2010

    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. 

    Thursday, April 1, 2010

    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.”