Thursday, March 25, 2010

Breaking My Own Rules: The Doctor Is In The House

(This isn't my man. But this is a gift he got me when he was out of town. He said I need to have a doctor in the house when he's not around. Isn't he sweet?)

There has been some good excitement in my life as of late, but it has taken me awhile to sit down and compose my thoughts. Because in some ways, I feel like I’ve become pretty good at dealing with the bad stuff, but not as good as soaking up the bliss.

So I guess I should start at the beginning. Our first date…

When I first started Methotrexate (MTX), I was taking it on Tuesdays. This particular Tuesday was bad. I slept from 12:30 until 3:30 in the afternoon. When I first started MTX, I would feel progressively stronger and better as the week went on. But for awhile, I would get more and more exhausted as the week progressed, and then I’d be staring Tuesday in the face again, wishing that it would go away.

I had a first date set up, which I really wanted to cancel, because I just wasn’t feeling myself. But how can you cancel a first date? If you want to attempt to make things work, you can’t. So I didn’t, and tried to make myself look better than half dead. But what do you wear when you’ve been sleeping all day and get out of your pajamas at 7 o’clock for a date?

I was worried. I’ve never dated a doctor before. Would he be able to read on my face or by the way I carry myself that I’m sick? Would it be obvious to him? And because he’s a doctor, he spends like 100 hours a week with sick people. Why would he want to come home to me? Man, insecurities are a bitch. Clearly, I have issues…

So the first date went well. And there was a second date. And the third date came and went with no disclosure of illness on my part. And I found myself hating myself because I didn’t ever want to have that conversation. Things were going well, and I worried that illness was going to mess it up. This is why I’ve always disclosed so early in the past, so that I didn’t have to worry about getting attached to someone, only to have them run the other way. Never before had breaking the rules felt so bad…

And there’s a part of me that feels this should be easy. There are worse things in the world to have to confess to someone. But then there’s another part of me that feels like there is never a good time to break this news to someone.

I wish it could be done in a “by the way” kind of way. But that doesn’t feel quite right, either. I don’t want it to seem huge, but I don’t want to minimize it, either.

Disclosing illness isn’t a requisite part of patient education, probably because doctors are notoriously bad at delivering news. They make sure you know about procedures you’re going to have, and medications you are going to have to take (when and how to take it), but they don’t prepare you for having to tell the people already in your life about illness. And they certainly don’t prepare you for having to tell the new people in your life.

But the truth is, more than worrying about what to say and how to say it, I worry about what happens after. Does the person take one look at me and run the other way? Do they hug me and tell me that everything is going to be okay? Are they relieved that “that’s all” it was, after being prepared for the worst – “we have to talk,” “there’s something I need to tell you,” etc.

When I finally got around to disclosing, I felt like a deer in headlights. And I felt myself going into shutdown mode. “There’s something I need to tell you about, but I really don’t want to…” I can only imagine what he thought might be coming next, because he honestly sounded relieved when he heard what I had to say.

I’ve found somebody, who, when I finally disclosed, basically said “so what.” He feels bad that I have to go through what I do, but it doesn’t change anything between us. With the right person, this isn’t earth shattering news. The other person says something like “we all have our issues,” and move on. That’s exactly what I was hoping to hear, but didn’t think anyone would ever come close to telling me that.

I’m forced to be reminded that not everyone is like my ex. And that the right person won’t see me as damaged, not whole, and in need of fixing. But it’s that notion that makes me so insecure about sharing this news. I realize now, that my last relationship was not a good one. But I didn’t know any different. I allowed myself to be treated poorly because I agreed with the notion that I was damaged, not whole, in need of fixing, and not worthy of love. It’s hard for me to sit here and admit to this. But now that I know that relationships can actually be good, it’s harder to allow such treatment to happen again.

I’ve realized that in my past relationships, I wasn’t myself. I pretended to be something I wasn’t. It wasn’t intentional. I was trying hard to make things work, thinking that I didn’t deserve more than what was in front of me. I started wondering if it would ever be possible to be the real me, illness and all. But I’ve met a person, who not only accepts that side of me, but embraces it, asks questions, provides answers, and makes me feel like myself is the only thing to be.

And it’s also in that moment, of unqualified acceptance, that for the very first time, I’m glad that things didn’t work out with my ex, because I see all I would have missed if I would have settled for someone who didn’t treat me the way I deserved.

The truth is, I’m so glad that I didn’t cancel that first date. I feel so lucky to have met such an amazingly wonderful guy.

The doctor is in the house, and for the first time ever, that’s a good thing!

Thursday, March 18, 2010

“Despite Lupus”

I had taken a break from reading books about lupus or rheumatoid arthritis or chronic illness, mainly, I think, because I have really been entrenched in illness for the past few months. Things have been quite up and down for me, and experiencing lupus flares after months without them has taken both a physical and emotional toll.

“Despite Lupus” has seriously been sitting on my shelf for probably close to a year. But I just haven’t been feeling it…until now…

Sara Gorman’s story sounds like so many young women with lupus, including my own. We’re at the top of our game, never stop kind of people…and boom…lupus changes all that. And for most of us, we were fairly healthy until we weren’t anymore. Although luckily for Sara, diagnosis came quickly after her first symptoms began to show. Mine went unheeded for years.

I think one of the main lessons of this book is a simple one. When it comes to lupus and the challenges that come with it, you have to be real with yourself. As Sara talked about all of the things she can no longer do or has had to accommodate, I’m struck by the thought that lately, more and more often, without even asking, someone is helping me put my coat on. I can get one arm in, but can’t maneuver the other enough to get the other arm in. It’s frustrating. It’s discouraging. It makes me feel like I’m 80 years old. Bras have become a chore for me, too. I’m finding that if I can maneuver my arms enough to swing it on, I’m partial to front closures (sorry if that’s TMI).

But who would have ever thought that at 24 years old, I’d be so concerned, not whether articles of clothing are fashionable, but whether I can get them on myself? I certainly never did.

Sara is the ultimate cheerleader. As I read the book, I imagined running, and having Sara running alongside of me, coaching me on, telling me I could do it. And I haven’t run in years. I also haven’t set foot in a gym since an acquaintance of mine contracted MRSA from the gym a few years ago. “Despite Lupus” makes me want to take back the things that lupus has taken away from me. Of course, there are things that I’ll never be able to get back. But there are others that I could have if only it weren’t for the fear that is standing in my way.

I buy purses based on whether I’ll be able to carry them both in my hand and on my shoulder. Silverware, plates, and cups all get a similar test (minus the shoulder part). So do books. Are they easy to hold? Will my hands and wrists hurt after only a few minutes of holding them?

I no longer wear my hair straight, because of the time and effort it takes to dry and straighten it, unless I’m having it done at a salon. Otherwise, I’ve come to wear it wavy/curly – which is actually what it is naturally – because it hurts my arms too much to style it.

There are many times over the last few years that I’ve wanted to go for a run. I was never a big runner to begin with, but it seems that as soon as I could no longer do it, I wanted to. Go figure!

I wish that I could have Sara on one shoulder, competing with my devilish side of me that seems determined to make many of the mistakes Sara warns against.

Sara talks about lack of control. I, too, cried when told I was being admitted to the hospital. It was the first time that lupus hit hard and I was unable to hit back. There was nothing I could do. It had, simply put, gotten the better of me.

The point of all of this is that “Despite Lupus” has made me look at ways my life has changed because of lupus. It also makes me realize that in some ways, lupus, while making life decidedly more complicated, takes me back to the basics of things. Sara encourages readers to measure life’s moments in new ways, ways that used to seem small and insignificant, but are now so precious and important.

“[…] my future of living well would be my greatest success yet to come” (181).

Yet again, I find myself deciding whether to do the lupus and arthritis walks. My feeling is that as long as I am able to walk and well enough to do them, I should. I couldn’t even touch them the year I got diagnosed. But I did both last year and think it may be a good tradition to start, especially because there are people who are willing to do them with me.

My illness outlook has certainly changed since I was first diagnosed. The year that I was sick and trying get diagnosed, I tried to keep things as normal as possible. I pushed myself way too far, and it was certainly at the expense of my health. I had planned to wage war. When lupus hit, I would hit back harder, being stubborn and headstrong. Not letting the disease get the better of me. But I’ve learned as of late to stop fighting, because it’s not a fair fight. It’s not a fight that I am going to win.

So I have to make difficult choices. I was asked recently if lupus has changed my plans for the future. How could it not? I always thought I wanted to work at a Level One Research university. But I’ve realized that in order for me to be competitive in that kind of environment, I won’t be able to be as healthy as I possibly can be. I do realize now how lucky it was that I really became sick after starting graduate school. While it made my first few years of grad school impossibly difficult, had I gotten sick before, I probably never would have committed myself to a five plus year PhD program.

So I am doing what I can, despite lupus!

(Gorman, Sara. Despite Lupus. Four Legged Press, 2009.)

Wednesday, March 10, 2010

Patient Knows Best

During my last flare, one of the lymph nodes in my left arm became swollen and painful. Nearly two weeks later, more nodes were involved and I was in a great deal of pain. This is the first time that this has ever happened. I had e-mailed my rheum to brief him on the situation, and when it got worse, I made an impromptu appointment to see him.

The more I thought about it, the more it dawned on me that this was the same arm I had cellulitis in, for which I was hospitalized in October (see Adventures In The ER And MPU). And the pain was very similar to the pain I had during that time. Imagine someone wrapping a tourniquet around your arm and it getting tighter and tighter. My arm was in so much pain and so tender that I couldn’t even put deodorant on. But within two days of starting an antibiotic, my arm started to look and feel much better.

I saw my rheum last Wednesday, who told me that cellulitis can often incubate in the lymph nodes, and that this was likely a secondary infection; that Methotrexate (MTX) had knocked my immune system just enough to cause the cellulitis to become active again.

Now wouldn’t it have been nice if one out of the bazillion doctors I saw would have mentioned the fact that just because cellulitis appears to be gone, it can incubate? Maybe they were worried that this information would make me paranoid and hypervigiliant. But I don’t think it would have made me any more than I already am, especially since that October hospitalization.

But this experience, as with the cellulitis the first time, made me realize that I am the main arbiter of my health, and if I don’t look out for myself, no one else will. I have to trust my instincts. I knew that what was happening under my arm was not normal. And the more I connected the dots, the more I worried that this was something serious, more than a cut from shaving or an ingrown hair. And yet, I waited nearly a week to make first contact with my rheum. I tried to convince myself that whatever was going on would resolve on its own, but instead it only got worse.

In America, the land of consumerism, it used to be that the customer was always right. Not so anymore. But if such a maxim still held, I wish the same also held for patients. After all, we keep our doctors (and the pharmaceutical companies) in business. And yet our word is often seen as hearsay. And maybe this is self-fulfilling and causes us to think that our opinions should be taken with a grain of salt. After all, I haven’t gone, and don’t plan on going, to medical school. But while I may not have a degree in medicine, I do have the market cornered on my body…most of the time, anyway…

And I think my rheum knows by now that he only hears from me between scheduled appointments if something is seriously not right, and in need of his attention. He also knows that given the original cellulitis infection, the pneumovax debacle, he is the one I go to first for anything more than routine issues.

Anyway, at my appointment, my rheum had a very “green” medical student come and talk to me first. She was asking all sorts of bizarre questions. Have I been exposed to industrial waste? Do I do monthly self breast examines? I could tell where this line of questioning was going. The “Big C.” It’s not like I hadn’t entertained that idea in my mind already – fever, swollen lymph nodes (But apparently, according to my rheum, issues related directly to lymph nodes aren’t tender to the touch. Who knew?). But given that the original node swelling had been related to a flare, I figured it had to be related to that. And not the fact that I drink radioactive sewage for breakfast…just kidding!

In some ways, I had some vague idea of what was going on. I didn’t need some med student trying to convince me otherwise. And my doctor came in, took a look, asked a few questions, and pretty much knew what was going on, too, based on all of the information I had provided for him via e-mail.

So I’m off MTX, again, and hoping I’ll be able to go back on it in a couple of weeks, once I’m off the antibiotic (Keflex).

More importantly, though, I am also reminded how much medicine is an inexact science. Doctors can only do so much, especially given the resources they have available to them. This whole re-upping of cellulitis is a perfect example. I’m on MTX so it can attempt to reign in my crazy immune system. But the catch is that if it suppresses my immune system too much in the other direction, I’ve opened myself up to a host of other issues, including pesky infections that my body is incapable of fighting off. (And as of this week, the picture for new drugs to treat lupus and rheumatoid arthritis got a bit more dismal)

So what’s the next step for me? I’m not really sure at this point. I’m hoping that I can go back on MTX, at least until my next (scheduled) appointment with my rheum in June. And from there, hopefully finding a drug that I can tolerate, does a pretty good job of reducing my symptoms, and doesn’t try to kill me in the process. But at this point, I’ve resigned myself to the fact that, that may be asking for too much. The thing I do know for sure, though, is that when it comes to my health and the care I receive, I know best!

And speaking of patients, check out the latest edition of Patients For A Moment, courtesy of Duncan Cross.

Wednesday, March 3, 2010

Always Something There To Remind Me

After hosting Patients For A Moment #18 and asking other patient bloggers about their relationship with illness, I decided that I should explore my own. I was a bit forestalled in this because I was hit with several lupus flares in February, which quite honestly, took me very much by surprise. Because these flares brought with them symptoms that I haven’t experienced in months, maybe even years, and also came with symptoms that I have never had before.

Flares are the direct hits, the most extreme example of my body in turmoil. My latest flare began with my right rib hurting. I guess you could call that my “universal sign” for a flare. That’s one of the very first symptoms I had way back when I first got sick. Then comes the headache, which seems to prefer only one side of my head – actually, the flare seemed to favor one side of my body – only to be followed up in the morning by the “lupus hangover.” And as I was sitting battling a headache and nausea, I realized that I did not miss these kinds of things.

I had a day. The signs were there. I had a freaking day to stop my speeding freight train of a body from derailing off the track. But I didn’t.

You know how else I knew I was flaring? I brushed my teeth and the toothpaste gave me heartburn…

I never realized before how my breathing changes when I’m in a flare and in pain. Somehow I’ve adapted to a kind of deep breathing – slow deep breaths – that seem to be one of the only things that keeps me at all calm and prevents me from freaking out when my body is going crazy.

And for the first time in two and a half years, I cancelled an appointment I had. I tried to gear myself up, telling myself that if I just threw some clothes on and headed into the frigid Michigan winter, I would make it. But then my head started pounding and the nausea came on strong, and I really thought that if I went somewhere I would either puke or pass out, neither of which sounded appealing. So I didn’t do it. And I knew that I was doing myself a favor.

In these moments, when every single movement is painful, and I can’t believe it’s possible to feel as bad as I do, I catch myself wondering what I did to cause my body to punish me so relentlessly.

Almost in the same instant that such thoughts enter my consciousness, I tell myself that I need to push such thoughts to the furthest corner of my mind.

It’s easy to want to find a trigger for a flare. Maybe I stayed up too late, or didn’t eat well enough, or worked out too hard. The list of what I could have potentially done wrong is endless.

But such self-blame is counterproductive, especially given the fact that I am no longer on meds specifically to treat lupus. My rheumatologist and I agreed at my last appointment that the RA was the bigger problem. But now I’m not so sure. Even though it seemed like Cellcept wasn’t doing anything, is it possible that it was and I just didn’t realize it?

The truth is, I will never know what triggers these flares, and the fact is, it is most likely a very complex combination of things. And as bad as flares are, there are other things, too – small reminders…

No matter what I’m doing, I can be feeling great, and then boom, just for good measure, I get reminded that no matter how healthy I may feel, if even for a second, I’m not.

There are certain things I do, which no matter how I feel going in, cause me pain. For instance, I can feel fine, have very little pain, and as soon as I start doing my workout video, it feels like someone is trying to pull off my arms and legs. Yes, it feels like someone is trying to dismember me (or at least it feels like what I imagine it would feel like to be dismembered). Nice, huh?

Every time there looks like there will be a reprieve, some other system gets f***ed up or something goes wrong. The past two and a half years have been a nearly constant onslaught of ridiculousness.

Even my insurance company insists on reminding me that I’m sick (see picture at beginning of post). Talk about Big Brother. I think it’s their way of making sure I realize how much more I cost than “normal” people my age.

And I keep having to be reminded that I haven’t been at this for that long. Next month will mark just two years since I received the diagnosis of both lupus AND rheumatoid arthritis. But honestly, it feels like 10 years. It feels like so much time has passed, and really, not very much time has passed at all.

As much as there is physical pain, there is so much emotional work and upheaval that come with flares and other signs of a body that is battling itself. And it’s exhausting.

I’ve been dealing with some other health issues, which I will hopefully post about soon. But the truth is, I feel like I’ve hit my limit. We all have a breaking point and I feel like I’ve hit mine. I am so ready to be taken off all the meds, as lately, they seem to be doing more harm than good. Sometimes I feel like illness has made me a stronger person than I was when I was healthy. But right now that seems like a pretty big price to pay from always having to be on guard about my health.

I am once again left to wonder:

Does this ever get any easier?

Is there ever a day off?

Because it seems to me that no matter how I feel, there’s always something there to remind me…