Wednesday, January 27, 2010

A Slave To Medical Technology?*

A few weeks ago, I took this bag of change I had to a coin counting machine. I’ve had the change for maybe a year, and figured I probably had about $70 worth. Turns out I actually had almost $160 worth of change. Change that I take out of my wallet everyday and save, because I don’t like carrying it around. Basically “found” money.

Anyway, rather than save that money, I decided to buy an IPod Touch. My aunt and a friend’s husband had both recently purchased one, and it looked pretty cool to me. It’s not something that I absolutely needed, but it only ended up costing me about $30 because of the change I had turned in.

I never thought I’d be a slave to technology, but this thing is awesome. Aside from making me more hyper-organized than I already am, the best things are useful and cheap (read $.99 or free) applications that are useful to those of us with chronic illnesses.

(Check out my pictures of screenshots from ITunes on my computer…)

I’ve downloaded a medication tracker, iMedication, which allows you to put in the name of the medication, the dosage and frequency, and the prescription number and when it is due to run out. It keeps all of your medication in a very convenient list right at your fingertips. Much better than my handwritten index card that I keep in my wallet, which has to be re-written every time a dose changes.

I’ve also downloaded MyEmergency, an application that allows you to keep all of your personal information, plus next of a kin, allergies, a list of the names of the medications you take, medical conditions, doctor details, and insurance information.

Another great application is My Pain Diary Lite (Lite as in free). This allows you to rate your pain intensity (on a scale of 1 to 10; no silly smiley faces here), the type, location, and trigger of the pain, and the remedy. I think this is a good way to more accurately keep track of flares, which I haven’t been very good at doing. It’s also good for people who keep a paper pain journal.

On the whole, I haven’t found one application in which I love all of the features, that’s why I have several separate ones. There’s also Medical Records and My Health Records, which are both free. I just downloaded those and am going to play around with them.

Obviously, there are going to be some things that won’t get completely digitized any time soon, like prescriptions and lab requisition forms. But on the whole, I’m really impressed with what’s out there, which seem especially useful for people who have complicated medical histories and health issues.

Although I guess there’s always the question of whether you really want to put all of your information in one place because 1) someone else could easily get their hands on it, 2) what happens if the IPod breaks, and 3) what if you don’t have it with you when you need it? Also, I wonder how doctors these days feel about their patients using such technologies. Do they streamline the doctor-patient encounter or make it more cumbersome?

Along with fancy IPod applications, there are a plethora of Internet sites, some more social network-y and free – like Cure Together and Medpedia - and some more practical and expensive, like Minerva.

If you know of other sites/programs that you particularly like (or don’t), leave them in the comments. I’m interested to know peoples’ experiences with technology as it relates to chronic illness. Do you partake or opt to stay away?

* I have posted about these product out of my own personal experience with them, and not because I have received compensation, financial or otherwise, from these companies.

Monday, January 18, 2010

"Hello, Lupie!"

At a recent support group meeting I went to, the leader asked us at the end of the meeting if any of us were offended that she refers to us as “Lupies” in her e-mails.

Personally, I’ve never been particularly fond of the term. But it doesn’t bother me, per se, that she uses this greeting. But apparently, it bothered someone. Because she received an anonymous complaint that someone found her use of the term to be offensive.

I cringe at how political everything is these days. Take, for instance, the recent Facebook meme that asked women to proclaim their bra color in their status update to raise awareness for breast cancer.

I admit, I did it, too. But then I read this article, and I saw the error of my ways. I hadn’t given much thought to the fact that many women who have had breast cancer can no longer wear bras. So in some ways, it made all of us tit-ified women seem like we were elevating ourselves above women who can’t wear bras or no longer have breasts.

There certainly is a pride that comes with supporting our own causes. But I think we do this, sometimes in detriment to ourselves, because we have limited the scope and range of our support. It is neatly and conveniently tied up in our specific illnesses. But as I have said many times before, regardless of the particular illness, chronically ill people, generally, have a lot in common with each other.

Lupus has been getting more attention lately, but the battle doesn’t start and end with lupus. Like many illnesses that impact mainly women, lupus remains the “bastard child.” And there are many other illnesses out there that get far less attention than they deserve.

When I was first diagnosed with rheumatoid arthritis and possibly mixed connective tissue disease, I remember being very dissatisfied with this. Neither explained the whole story, and I didn’t want to get lumped into a vague disease category. When I received the diagnosis of lupus, in addition to rheumatoid arthritis, it made sense. And it gave me a box to put myself in.

But I realize now that the box may not be all it’s cracked up to be. Because so many of us have many other illnesses on top of our primary ones. I now have Raynauds, and the jury is still out on a few other auto-immune issues. So in some ways, the “check a box” mentality is severely limiting.

Lately, I’ve been at odds with various people about the role that illness should play in my life.

When it comes right down to it, I think you have to own it. Sometimes owning it means making it more visible for yourself. And sometimes it means making it more visible to others.

If I don’t do it for myself, then I do it for all those 20-something women, who, in the prime of their lives, find themselves having strange and bizarre symptoms that no doctor can seem to figure out. And for those who start having joint and muscle pain after working out, which eventually never goes away. Because I’ve heard this story all too often from those I have met who have lupus.

I guess my point is, when it comes to support, healthy and sick people play very different roles. I have established that there are certain people in my life who are never going to make an effort to understand my illnesses. And really, the only people that get to hear everything, are my fellow “Lupies,” who can understand every part of this journey.

Believe me, I love the healthy people in my life, but sometimes they really just don’t get it. And there is a huge part of me that is grateful that they don’t, because if they did, it would probably be because they’re sick, too.

When I was in the hospital in October, my room phone never stopped ringing. I think it drove the doctors kind of nuts because every time they’d come in to talk to me, I’d be on the phone. And there was a big part of me that wanted to tell them that, that wasn’t my real life. And I knew that as soon as I was out of the hospital, things would be back to “normal.” The hospitalization made a lot of people take notice, who hadn’t before.

But it’s like when you spend months and months, or even years, planning a big party. And then the party comes, and it is over with in two seconds. There’s a huge letdown afterwards. Getting out of the hospital certainly wasn’t a letdown, but some people going back to the way they had acted pre-hospitalization, was.

This is all to say that we all make mistakes sometimes. Even those of us with illness don’t always say or do the right thing. Sometimes following the crowd supercedes common sense.

There is so much competition, even between groups that deal with the same disease. So who’s being helped in all of this? And who’s being hurt by the lack of cohesion? If it was the organizations that were being hurt, then they certainly wouldn’t be so fervently against each other. When it comes right down to it, it’s the patients that suffer the most, not from disease necessarily, but from a lack of readily available support.

I’ve wondered quite often why none of the doctors I’ve been to have had any resources or literature available. Sure, now my doctor asks me to sign up for research studies, but that’s because his colleagues are doing it, and who knows what he stands to gain.

I think a lot of doctors see this as being a single patient fight. Doctors don’t really care at the end of the day if you want to stand up and speak out about your illness experience, or if you want to find a group to support you. Doctors might support events, such as walks, but again, this is to promote themselves and the newest drugs. They speak about a cure, but to me that’s not much more than a good rhetorical device. If you use the C word, you can command a crowd for sure.

I have often wondered what it would be like if lupus and purple became the “thing” that was plastered on cereal boxes, yogurt containers, and a myriad of other products. What would it look like if lupus was widely available for public consumption? I honestly think it would leave a bad taste in peoples’ mouths. I don’t think they would be comfortable with it, and I don’t think I would be comfortable with it, either. This isn’t about endorsements, even though that’s where the money is.

Clearly, I’m skeptical of the efficacy of these kinds of politics. If a certain group can’t agree on what terms they should be using, there are going to be great rifts between people with the same illness. Like I said, I’m not 100% fond of the term Lupie, but I think if someone with lupus really takes offense to it, it’s because they haven’t owned up to their illness.

In many ways, the beast is not these illnesses. The beast is the ignorance of healthy people. The beast is doctors who don’t listen to what we’re saying. And unfortunately, the beast can sometimes be ourselves, losing what’s really important, in the battle for recognition.

I think all of the politicking proves that we have to stick together. I shouldn’t have to divide my loyalty between lupus and rheumatoid arthritis. My body certainly doesn’t, so why should my mind?

Monday, January 11, 2010

The Ultimate "Coyote Ugly"

A month or so ago, I went to bed with a dull ache in my shoulders, which I assumed was from carrying groceries and other purchases after a shopping trip. When I woke up the next morning, it was clear that I was flaring. I could only extend my elbows half-way – and resigned myself to walking around like Frankenstein’s monster all day long – had a low-grade fever, and felt nauseous.

Lupus and rheumatoid arthritis (RA) are severe examples of coyote ugly. I never know what I’m going to wake up to. And I find that particularly distressing.

For those who don’t know, coyote ugly is an “urban” term that suggests that after a drunken night, you wake up next to someone in your bed who is so ugly that you’d rather chew off your arm to escape than wake the person.

And that’s kind of how I feel. Even though illness is not a person, I feel as though I’m at the mercy of something I don’t have total control over. And I guess a big part of illness acceptance is the lack of control aspect.

Lately, especially, I really feel like I don’t have very much control. I wonder: Do we control the medication or does the medication control us? Or is it a combination of the two?

We were at family dinner for the holidays, and my elbows were in such pain and of little use, I asked my sister, who was sitting next to me, if she could cut my food for me. Seriously. It was a new low for me. Being that I was off Cellcept and Methotrexate was not working yet, I guess I shouldn’t have been surprised that I couldn’t function up to what I feel is, or should be, my potential. But my “highest level of functioning” keeps changing, and it’s pretty hard for me to deal with.

Cellcept clearly did not work for me, and it may have even caused more harm than good. And Methotrexate seems to be a mixed bag so far. The day I take it, I get dizzy and nauseous. And lately, I’m exhausted a lot of the time. The thing is, the dizziness and nausea aren’t so terrible, but they’re just enough to make me wonder why I’m doing this to myself. And my rheumatologist mentioned increasing my dose, but I’m not eager to remind him of that fact.

Honestly, I think I was doing better when lupus was the bigger issue. As much as I thought that lupus was a problem, and it was (and still is to some extent), the symptoms were more consistent than my RA symptoms are. With lupus mainly came dizziness, nausea, headaches, and muscle aches, mainly in my thighs and upper arms. But I can go to bed fine, and wake up with swelling and stiffness in my knees, elbows, hips, wrists, fingers and hands, and shoulders, to the point where those appendages become pretty much useless. Clearly RA has the upper hand right now.

It’s not so much that I worry about waking up and looking at myself in the mirror, and seeing a stranger. I think I’m past that phase now. It’s more that I’m worried about what new symptom I’ll wake up to, or what part of me will have decreased functioning. I guess if we all lived life this way, we’d have no reason to get up in the morning. But I guess I’m still at a point where I don’t know I’ve pushed too hard until I find myself in so much pain that I can’t move.

I try to be optimistic that Methotrexate is going to make a real difference, that my arthritis won’t get worse before my very eyes. But right now, I’m not really sure what to think.

I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…

Saturday, January 2, 2010

2009: The Year For Lupus

For all intents and purposes, 2009 seems to have been the year for lupus. There have been a lot of happenings surrounding the disease.

MJ – With the sudden and tragic passing of Michael Jackson, the King of Pop, questions surfaced about whether the singer suffered from lupus. I’m no medical expert, but based on what I’ve heard, I think that there’s a good possibility that he did have the disease. Keeping with this theme, I channeled my inner Michael, and went as him for Halloween (see pictures at beginning and end of this post).

“Lucy” – Julian Lennon and James Cook introduced the song, “Lucy,” which paid homage to the Lucy from the song, “Lucy in the Sky With Diamonds.” Lucy Vodden died of complications from lupus in September, at the age of 46.

What strikes me about this song is the fact that it’s about Lucy and her girlfriends. I think that, especially for women with lupus, this is empowering. It’s like, despite her illness, she was stilled loved.

I think that’s something that I forget sometimes. Sometimes I feel incredibly alone, like I have no one. But in reality, that’s not true. It’s really easy to focus on the places where support isn’t coming from; my program/department, men, the world in general, sometimes those closest to me. And it sucks! But this upbeat song puts things in a different perspective, even though it doesn’t explicitly talk about the disease.

In the music video, both Lennon and Cook are wearing the purple “Someone you know has lupus” bracelet.

You can find out more about the song here.

Benlysta – The first lupus drug in over fifty years made it into the news, suggesting that it may just be the next best thing. Here were my thoughts on it.

Me – For me, 2009 was more down than up. It began early on with the tragic death of my cousin, which sent me reeling. It continued with a search for answers about myself and others. There have been posts about love, dating, relationships, and babies. There was my first lupus hospitalization. There was the opportunity to travel, to talk about my illness experience, and to meet blogger friends.

Once again, my readers have come to my rescue. I’ve been overwhelmed by the comments that were left while I was away, and even though I may no longer get a chance to comment back to everyone, I want you all to know that I read your comments and they mean a lot to me.

Here’s to hoping that 2010 will be full of good things!