Monday, December 21, 2009

Add Another One To The List

There’s always something, isn’t there?

It’s the holiday season, and lupus and rheumatoid arthritis are the gifts that keep on giving…

I had my six-month rheumatologist appointment on Friday.

The more that I think about it, I’ve had pretty constant disease activity since I was in the hospital, and maybe even before. And this isn’t shocking, considering that the hospital is a pretty horrible place to try and survive in, even if you’re not dying. No sleep, crappy food (if you even feel like eating), and being constantly poked, prodded, and questioned by strangers. The hospital is the ultimate lack of control.

For instance, I can’t quite forget when a hot, male orderly came into my room, asking if I had paged the nurse. I reluctantly told him that I had to use the bathroom. He asked if I could get up and walk to the bathroom or if I preferred a bedside commode. I opted for the bedside commode because I was in no condition to walk anywhere at that point. I remember thinking, nothing makes you feel eighty years old like a bedside commode… (Obviously, my mind must always be on “thinking of good lines for blogging” mode)

Anyway, my doctor was so charming, he squirreled me into getting the H1N1 vaccine. I said I wouldn’t do it. I said I would refuse. But he offered up, unprompted, “I got it. And I made my wife and daughter get it” (I didn’t know he had a wife and daughter - maybe he just made them up to butter me up). I was tempted to say, “Well, they don’t have whacked out immune systems.” But I didn’t. I made the decision to get the shot. And I’m not suggesting that anyone with similar illnesses get it. I think it’s a personal decision. My reporting this is just that. I’m not advocating one way or another, although I know there are many people out there who have very strong opinions on both sides of the issue. I found myself looking and feeling my arm, making sure that it didn’t look weird, or hurt more than I thought it should. I kept the injection site covered with a band-aid for several days. All seems to be fine so far…

So I am officially off of CellCept. But I am starting Methotrexate (MTX) next week. I have avoided MTX and am not thrilled about this change. But…

Based on the symptoms I am having, my rheumatologist and I agreed that the CellCept seems to have plateaued – when I had to be off of the CellCept for two weeks during and after the “pneumovax debacle,” I didn’t know if I’d be able to function without the CellCept, but I was fine – and that the rheumatoid arthritis has taken the “upper hand.” My right hip is a daily pain, and my elbows are painful, swollen, and don’t fully extend anymore, without great pain and effort. This was a symptom I was having when I first started seeing my rheum. Reverting back isn’t a comforting feeling.

I’m starting on oral MTX, which only has to be taken once a week. My doctor seemed jazzed about the shot form. But I protested. This is the one thing I’ve been trying to avoid all along. I just don’t think I can inject myself. And there has to be a point where I put my foot down, and say, “I just won’t do that.” My doctor thought it was kind of funny that the mere thought of giving myself a shot made me nervous, given everything I’ve been through. But ultimately, he conceded. He said that if I don’t do well with the oral form, we will try the shot, and we will try and coordinate with the student health center so I can be given the shot once a week and won’t have to do it myself. Not so sure I really want to trust the student health center with shooting me up with anything, but at least the guy is trying…

Plus, given my more than occasional blue lips and fingernails, my rheum confirmed that it looks like I’ve acquired a secondary condition to both lupus and rheumatoid arthritis: Raynaud’s (phenomenon). Fabulous. Just add another one to the list.

It’s funny because the nurse who met with me to go over MTX said, “If you have a fever of 100 or more, and there is any sign of infection, you have to stop taking the medication and call us immediately.” Then she said, “But you know, a sniffle is not an infection.” And I’m thinking to myself, you just told me to be hyper vigilant, and now you’re telling me not to overreact. Makes total sense.

A lot happened at this appointment. But I feel oddly okay with both of the decisions I made. My doctor was cracking jokes. His demeanor was so much different than my very first appointment with him in January 2008. There was a point in time when I considered switching doctors. But this appointment put me at ease. I asked if MTX was truly the best option at this point. He said yes. And given that we haven’t tried everything yet, I feel like I have to try things at least once. And, in some ways, I’m happy to be trying a new med because we’ve kept things status quo for a while, without seeing any marked improvement. Plus, we I think we’ve been fairly liberal in terms of treatment to this point. My rheum even thinks that some of my recent gastrointestinal issues may be a result of having been on the CellCept for as long as I was. So despite all of the bad things I’ve heard about MTX, I have to be positive and think that it will hopefully work for me and that change is a good thing…

More than anything, I’m amazed at how far the relationship with my doctor has come. And I appreciate that we both took the time and effort to feel each other out and get to know each other, over the last almost two years. I feel at ease with my decisions because I felt comfortable asking the important questions, and my doctor openly and willingly answered them.

I’m not sure whether it was the holiday spirit, eggnog, or something else that put a spring in my doctor’s step, but whatever it was, I liked it.

I’m sure I’ll have plenty of updates once I’ve started MTX, and I’m a bit relieved that I’ll be at my parents’ when I start it. So, for now, I’m off…

Happy holidays, everyone! Catch you in 2010!

Monday, December 14, 2009

Shedding Illness Baggage, One Layer At A Time

“[…] Open me up and you will see
I’m a gallery of broken hearts
I'm beyond repair, let me be
And give me back my broken parts
I just want to know today, know today, know today
I just want to know something today
I just want to know today, know today, know today
Know that maybe I will be ok […]”

- “Be OK,” Ingrid Michaelson

I can’t believe it’s almost 2010. What a crazy year it has been. And in the spirit of the New Year, I’m going to make this post a confessional, well, I guess, more so than usual.

I had anticipated taking a leave of absence winter semester. A lot of this semester has been spent getting advice and making decisions. And ultimately, I won’t be taking leave from my PhD program after all.

There was just no way to secure both money and health insurance, and I can’t really afford to be without either. And the alternative, of having health insurance covered, but having to apply for emergency grants while waiting for my SSDI paperwork to be processed, was not really a viable option. I fear that this situation would have put far more stress on me than staying where I’m at and doing the best with what I’ve got. This decision hasn’t been easy. But the prospect of filing for Disability at the age of 24 makes me cringe.

This is something I wrote, anticipating taking leave, and I thought it was important to share:

I need some time to regroup, (re)evaluate my priorities, and take stock of all that I’ve lost and gained in the last two and a half years. Because right now, most of what I’m seeing is the bad. And a lot has happened in a very short time, but not all of it has been bad.

For the first time in awhile, I’m not making the safe choice. I’m not staying in a situation that makes me unhappy because it’s easier to stay than to go. I’m letting go of everyone’s expectations, including my own, knowing that I will come out stronger, more focused and more determined, on the other side.

A lot of people have said, but you want your PhD, of course you’re going to finish. But at this point, I’m not sure that will happen. If I find that I am so happy being outside of this environment, maybe I won’t continue. I do want to get my PhD, I want to finish what I started, but not if it is both physically and emotionally detrimental…

So I’m not going to sit here and make false promises that I will take a semester off and come back refreshed and renewed. The time away may give me clarity that I have to go in another direction. It’s easy for people on the outside to make suggestions and give advice, but until you’re in a graduate program, you don’t know how much of a life commitment it is.

So, I guess I’ll have to find my clarity elsewhere… Okay, so here goes the confessional:

1. The combination of a friend in the program dying and my own hospitalization made me realize that this is not the life I desire. And this is not an environment I will be able to thrive in, given my health issues. I think that this is something I had known for awhile, but that I wasn’t really ready to admit to myself. But now that I have, I feel much better about my future in the program, a future that will hopefully be constructed on my terms.

2. In my recent posts on marriage and children, I’ve come to realize that these parts of my life are going to be complicated by illness. I don’t need them to be further complicated by a job that doesn’t allow me the flexibility to have a life outside of academia. I don’t think this makes me traditional… or a failure… In fact, such “epiphanies” have taken a lot of the pressure off of me. I no longer desire to compete for the top jobs, fellowships, etc., because I know I can’t. And I’m okay with that. I’ve realized that having a family is more important to me than I may have let on, and that in order to make those things happen, I can’t be in an environment like the one I’m in right now.

3. I have these really disturbing dreams where all my teeth fall out. Or my hair falls out. And I realize that this is symbolic. These are visible signs of illness. I get scared because everyone seems to think that my hair is one of my best features. But hair falls out. Lupus can make your hair fall out. Drugs can make your hair fall out. Hair gets gray and white. Hair is transient. I want to be something more than my hair.

4. Along similar lines, I confess that I’ve saved every prescription bottle for the last two years. My therapist, who I admitted this to recently, assured me that this is a “normal” coping mechanism for me. And that he’s not concerned. He says I’ll get rid of the bottles when I don’t need them anymore, when I have the recognition that I’m seeking. I guess when my illnesses mean something to more than just me. But I’m really scared that I’m never going to get it… The bottles are the tangible embodiment of my illnesses. Because most of the time, I look fine. They are the only reminder that anything is amiss. Of course my friends and my family acknowledge what is going on. But I worry that none of them really get it. Yes, I am more than my illnesses. But I am also a different person because of them.

5. I hate to remember the look on my parents’ faces, when they saw me in the hospital for the first time. Or the sound of my friend’s voice on the phone, when she finally got to talk to me. There was fear, but there was also a sense of helplessness, that even I as the patient, did not have. I’m sure I looked and sounded half dead. I certainly felt like I had been put through the ringer. And what I fear the most is that this is only the first in a long line of hospital stays in the name of “complications from lupus.”

6. I’ve become so hell-bent on giving people second chances that don’t deserve them. I’ve convinced myself that I shouldn’t begrudge other people their baggage when I have so much of my own. But in the end, I’m the one who ends up getting hurt. And all I’m left with are lame platitudes that don’t mean shit. How’s that for honesty and openness?

7. I can’t listen to the song “I’ll Be,” by Edwin McCain, without crying. Literally, every time. And I haven’t listened to Eric Clapton since, well, you know…

In the past few months, I have experienced some of my lowest points ever. I have cried more than I think I have in the last 23 years of my life combined. And at this point, I don’t think there’s a place I haven’t cried (coffee shops, the grocery store, etc.). I’m okay with this, but I think that for some people in my life, it is cause for concern. I’d be more worried if I couldn’t cry, if I hadn’t shown emotion towards all that has happened. People have died, people have walked out of my life, I survived my first lupus hospitalization. And when I think of all that has happened, I cry, because I’m not quite sure how I’m still standing.

More than remembering the things that have happened, I have accumulated an immense amount of baggage. And I think it is all illness-related baggage because everything in my life is intertwined with it. Along with the baggage, there are also holes. Holes in my heart, holes in my life that I’m desperately trying to fill. It’s a strange combination to be trying to shed layers and fill holes. And to think that every time I get hurt, I can’t get more hurt. And then I do…

Wednesday, December 2, 2009

Chronic Illness Is A Marathon, Not A Sprint

Recently, one of my good friends got a tattoo to commemorate running her first marathon.

I’ve been thinking about getting a tattoo for awhile, one that symbolically represents lupus and my illness journey. And my friend’s explanation got me to thinking about the fact that having lupus is like running a marathon…every day…for the rest of my life. Or living with any chronic illness really.

Acute illness is a sprint. You run hard and fast for a short period of time. You lose stamina, but you gain it back.

But chronic illness is a marathon. It’s a long haul. You need to learn how to pace yourself so that you’ll survive to the finish line.

Running a marathon takes discipline and training. It takes as much mental, as it does physical, agility.

While I may never actually take part in a “real” marathon – although I would like to try to walk a half-marathon at some point – I think the analogy of chronic illness as a marathon is a fitting one.

And some of the advice for marathon runners is fitting for “sick” people, too: get plenty of rest, drink plenty of water, practice self-care, and always wear comfortable shoes.

It’s hard to imagine that people who want and put their minds to running a marathon get tired of training. But they do. So just imagine how chronically ill people feel. They’re training for something they didn’t ask and weren’t prepared for.

So if we think about the courage and strength it takes runners to undertake such a feat, it should give us hope (and pause) about the courage and strength that we, as chronically ill people, have to get through each and every day.

We don’t always make it through on the top of the leader board. Sometimes our illnesses get the better of us. But ultimately, we push through and move on. And if we think of each day as a leg of the journey, we always have our eye on the prize and are focused on the end goal, whatever that may be.

(And in case you’re wondering, the jury is still out on my tattoo. I know what I want to get, and where on my body I want to get it, but there’s something that’s holding me back. I’m not sure what it is, really. A tattoo is so permanent. But then again, so is lupus. And lupus wasn’t a choice. So stay tuned…)