Wednesday, October 28, 2009

Visions Of Babies Dancing In My Head

(This is, in an offhanded way, a follow-up to last week’s post on marriage)

Yes, it’s weird, I’ll admit it.

I find myself thinking about pregnancy and babies often. I even find myself standing at the mirror, staring at my flat stomach, and wishing that it wasn’t.

I know there’s a lot of shit in my life that I need to get together before I let someone in, let alone someone that has to grow and be nourished inside of my body for nine months.

Maybe the obsession stems from the general feeling that there is something missing in my life. But I know this is one thing that I can’t do until I’m good and ready, or at least until my body can handle reasonably well being off of all of the meds I’m currently on that are not safe for a fetus.

Then there’s the question of whether I can get pregnant at all, or if I could do so safely. I’ve never discussed this with my rheum. Sure, I’m in my “childbearing years,” but it’s not as if I have anyone in my life steady enough that I would want to have a child with. To me, these are questions that you raise when you’re ready to “put a ring on it.” And yet I find myself thinking about them, anyway, in the absence of a man, let alone a ring, or a promise of forever.

I guess there’s also the feeling of time ticking down. Like I don’t know how many “good” years I have left. It’s my own summation that I will probably need a hip replacement before I’m 35. And my fear of time, or the absence of it, could be completely unfounded. But the fear is there, in the back of my mind.

I haven’t mentioned this feeling to many people, not even to my good friends, not even the married ones. Because I don’t think they’d really understand. When it comes down to it, they should be able to have children whenever they want. But for me, it’s going to be a cold, calculated, planned event. I can imagine that if I asked a fortune teller who had a crystal ball, the response would be, “The future is cloudy, it isn’t clear.” And maybe in reality, that’s true for everyone. But it feels especially true for me.

And I have to wonder, can a body gone haywire handle the miracle that is life at all? Is my body capable of supporting another human being, if it isn’t always capable of supporting me? These are questions that I will someday actually have to face.

It would be nice to ask them now and have someone who shares the desire to have the answers to them, too. But on the other hand, they could change everything, for better or for worse. And I truly don’t know what the answers will be.

As someone who was severely premature when I was born, and who is still on the small side, I would venture to guess that I’d be a high risk case in the absence of lupus and rheumatoid arthritis, adding insult to injury.

As I say, these questions and ideas aren’t well formulated. I haven’t really done any research into this, as none of this is happening tomorrow. But the thought of having a baby swims inside my head, begging for primacy.

I even find myself having cravings. Anything salty or sweet that comes from a package and is completely unnatural. I feel like my body is nesting (or at least bulking up for the winter?). But maybe it’s just my hormones talking, trying to prepare me for the next stage of my life. Trying to gear me up for the time when there is someone in my life who wants to be with me forever and settle down and have children. Maybe my body is preparing now because of the long haul that it knows is awaiting it; preparing for what most likely will be a one shot deal to get it right.

Maybe I’m hoping for something to look forward to…someday…maybe…

Friday, October 23, 2009

The Things We Do For Health Insurance…Er…I Mean…Love

“[…] A compromise would surely help the situation
Agree to disagree but disagree to part
When after all it’s just a compromise
Of the things we do for love, the things we do for love
The things we do for love […]”

- “The Things We Do For Love,” 10cc

Once upon a time, there was a girl who believed in love, and marriage, and the fairy tale wedding, and the happy ending. But then she got lupus and rheumatoid arthritis, and realized that she had to be realistic about things…And while love might conquer all, health insurance conquers more…

Last year, I saw a story on CNN where a man that had a severe tumor in his neck married one of his female friends so that he could get on her health insurance in order to get treatment, because he didn’t have any and couldn’t afford it otherwise. Quite honestly, at the time, I guffawed. I thought, wow, that’s really sad.

But I never thought that could be me…

And it wasn’t until I read a recent post from Duncan Cross that I actually considered the idea.

(Although there was a point this summer when the school let my insurance lapse that this thought briefly came to mind…)

I’ve been dealing with a lot lately and have been contemplating taking a leave of absence from my PhD program. Currently, the major roadblock is health insurance. If I leave the program, I won’t have any.

I’m 24, but my parents don’t have health insurance (so I can’t take advantage of any of the loopholes in that sense). And even if I qualify for Cobra, it will certainly end up costing me more than I would make in four months working at a job given that I have a bachelor’s degree in English and sociology. And oh yeah, don’t forget about my pesky pre-existing conditions that got me into this whole mess in the first place…

It’s frustrating because I don’t want the reason that I stay locked into a situation I’m unhappy in to be solely because of insurance. But welcome to America in 2009. That seems to be the way it goes these days…

And I don’t want the reason I get married to be because of health insurance. When the time comes, I want it to be for love. And I don’t want the person I’m with to think that I’m only in the relationship for that. But there comes a time when practicality and necessity trump abstract notions of the way life is supposed to be.

And the thing is, a lot of people get married simply for the benefits that are acquired. Look at Sandra Bullock and Ryan Reynolds in “The Proposal.” Yes, it’s a movie. But they plan to get married so that Sandra won’t be deported, and in the end, they fall for each other. So there’s nothing to say that love as a business transaction can’t work. And if you are seeing the other person at their worst, their lowest, their most in need, well, it can only get better from there…

So, is it likely that I’ll run off tomorrow and elope with the first stranger I meet? Probably not. But the truth is, this is a somewhat practical solution to a real problem. And when it comes down to it, there are a lot of relationships that have succeeded or failed because of less. Many people head into (or end) relationships for completely selfish reasons. The bottom line these days is that everyone is out for themselves. And if you are a person with a chronic illness, insurance is your bottom line. It’s the one thing you, possibly quite literally, can’t live without.

While this post is only a little more than half serious (seriously, it might come to that because it’s almost the easiest solution. I mean, come on, what are the other options?) – my parents would kill me - and I don’t talk about insurance issues often, the current situation is dismal, at best. The fact that anyone in America has to consider this option, let alone utilize it, is beyond sad. It’s a reflection on the richest country in the world seriously failing its citizens.

But given my dismal romantic life as of late, I’ve kind of given up on the idea of love at the moment, but have warmed up to the idea out of economic necessity.

So, the only question left to ask is…

Any takers?

(It’s too bad that mostly women read this blog…)

Tuesday, October 20, 2009

It's Called Lupus, Stupid!

I learned a very important lesson on my (first ever) trip to NYC… No one talks to the girl wearing a mask on the plane…

My doctors in the hospital said that it was up to my PCP to clear me on Thursday to travel to New York on Friday. She told me that as long as I felt comfortable being away from my doctors and wasn’t feeling ill at ease, she thought I was fine to go, and left the decision up to me.

The one thing she did request is that I definitely wear a mask on the plane. Although I did not love the idea of wearing a mask, and have avoided it thus far, I felt like it was a small price to pay to be able to travel, given everything that I’d been through the past week.

As it turns out, not much to my surprise (but to my disappointment), people are afraid of people wearing masks. The guy sitting next to me on my flight from Detroit to Chicago never said a word to me, and this continued on my flight from Chicago to New York, and then again on the way home. Four flights, no conversation…

I did not wear the N-95 masks that I had bought (but did not wear) on my trip to San Francisco, as I tried it on for about two minutes, and it was ridiculously hot and uncomfortable. I purchased some regular hospital masks, like I had to wear while I was in the hospital. If that type of mask was good enough for the hospital, where germs undoubtedly abound, it’s good enough for being on an airplane. It’s the type of mask that has a flexible band at the top to fit to your nose, but is soft, and not unbearably hot to have on for almost three hours.

In the end, I was glad that I wore the mask because there were a lot of coughers on all four of my flights. I think it would be nice if the people who are acutely sick would wear masks instead of the people who are trying to avoid getting sick. But that’s the way it goes, and as I said, a small price to pay to be able to travel with some piece of mind.

Although this wasn’t a stress free trip by any means. When I got to Chicago on my way to New York, my flight had been cancelled due to rain. I was able to get a flight out two hours later, but it would appear that my bag went on a non-existent flight and arrived in New York when my original flight was scheduled to. If it wasn’t enough that United lost my luggage on my way to New York, when I was getting on the plane back to Detroit, the person scanning tickets (having seen me don the mask a few minutes earlier) said, “Welcome aboard, Dr.” I wanted to punch him in the face. People behind me started laughing. Like it isn’t hard enough to have to wear a mask without people making fun of you? It would be great if these airport personnel could actually stick to doing their jobs, and not make life more difficult for passengers. (Luckily my medication was in my carryon and not in my suitcase, which as of now, seems lost and gone forever)

I was really tempted to write “lupus” on the mask and wear it around, but not enough people know about lupus or understand it, without that being potentially more stigmatizing than wearing the mask itself. So, just to make myself feel better, I did write “It’s called lupus, stupid!” on a mask, but didn’t actually wear it.

I think the message is at least as much to others as it is to myself. As I said in my previous post, lupus isn’t small beans. The illness is real and so are its consequences. I learned this first hand with the vaccine debacle and subsequent hospital experience, my first as a patient with lupus and rheumatoid arthritis (actually, my first “real” hospital experience since I spent four months in the hospital as a premature newborn).

Lupus causes you to do things that you wouldn’t normally do, or other people don’t have to do, like wear a mask on a plane. I went to the NBC store, hoping they had a House t-shirt that said “It’s Never Lupus,” but they didn’t. I totally would have worn that on the plane.

Despite having to wear the mask and the fact that United lost my stuff, I had a fun time in NYC with one of my really good friends. I got to see Rockefeller Center, Times Square, MoMA, Fifth Avenue, and many other sights that I had only ever seen on TV, which was pretty cool. We also got to catch up and fill each other in on the last few months of our lives. It was definitely nice to get away, although I may have to pick a warmer destination next time…

I guess this trip made me realize how unprepared and in denial I have been about my illnesses. I purchased a small binder-type system (while I was in New York) that I can put all relevant medical information in, that I plan to have with me at all times – this includes doctor names and contact info, medication list, people to call in the event of an emergency, etc. Because I felt awful that some of my good friends got their information about what was happening to me via Facebook, rather than directly from me or my family. But I think that no matter how prepared you are, you’re never really prepared enough, whether physically, emotionally, or both. And lupus will do that to you…

Thursday, October 15, 2009

Adventures In The ER And The MPU (Medical Procedures Unit)

Wow, time has really gotten away from me. I can’t believe that it has been over two weeks since I last posted. There has been a lot of personal stuff going on, plus some unexpected health issues.

On Friday, I played the role of the dutiful patient and got a pneumonia shot as my rheumatologist suggested. When the nurse swabbed my arm, I noted that she had swabbed in a weird place, and she responded by telling me that the pneumonia vaccine is NOT injected into the muscle. Okay, I’m supposed to trust these people, right?

I started feeling a bit off Friday night, having chills and feeling achy. Saturday morning I woke up with a silver dollar sized welt on my arm around the site of the shot. My arm was really hurting, but I figured it would get better.

I called the doctor on call at the student health center Sunday morning after I woke up to a fist sized welt, rather than a silver dollar sized welt. I was told that this was probably a normal reaction, but I could come in Monday morning if I was still concerned.

Thanks to my good friend, Maria, for the suggestion, I called the rheumatologist on call at the hospital where my rheum is. I received a call back telling me that it sounded like I had an infection and I needed to get myself to the ER.

I went to the ER with the assumption that I would be given some oral antibiotics and be sent home. Unfortunately, this did not happen. My arm worsened, so after spending 24 hours in the ER, I was admitted to the hospital. The doctors suspect cellulitis, an infection of the tissue, possibly combined with a possible allergic/autoimmune reaction.

It’s difficult to determine if someone who doesn’t have my health issues and isn’t immunosuppressed would have had the same reaction. But regardless of this, it is clear that the vaccine was administered incorrectly – it was not injected into the muscle - and landed me in the hospital for three days.

I had to be taken off the CellCept, and have to stay off of it until I’m through with the 10-day course of oral antibiotics I was sent home with. I am a bit concerned about the side effects I might have once I start back on it again, but there was some concern that the CellCept was worsening the infection.


Despite all of the craziness, I was told to go ahead with the previously scheduled endoscopy and colonoscopy. So after getting out of the hospital Tuesday night, I was back in as an outpatient on Wednesday.

I was pretty nervous about this. I did have some discomfort during the colonoscopy, but slept right through the endoscopy. The doctor did a bunch of biopsies, so hopefully I will know the results next week.

Definitely the worst part of this adventure, in the Medical Procedures Unit, was the preparation. You know, there is some shit in my life that needs to be liquefied, but my literal shit, not so much. I think a great Saturday Night Live skit would be a boy band singing a song called “Liquefy my shit”…Okay, you get the point…


Amazingly after all of this, I saw my PCP for the first time this morning and have been cleared to go on my trip to New York tomorrow. I’m really happy about this as I am in much need of a vacation.

Mainly I’m recounting all of this so that you all know where I’ve been. I know there are a lot of curious people. I left the personal stuff out of here and focused on the health stuff. But suffice it to say that the last few weeks have been crazy.

Lessons learned over the past few days:

- Follow my instincts. If I think something is wrong, it probably is.

- During the bad times, your “people” are weeded out. It came through loud and clear who my people are. And I am so grateful to them.

- Lupus isn’t small beans. Neither is being immunosuppressed.

- The body needs rest. I guess my body needed to freak out and I needed to land in the hospital and do absolutely nothing for three days to realize this.

In the end, I think that my sense of humor is intact, although my appreciation for vaccines has decreased significantly. While, I’d like to say that I’m no worse for the wear, I kind of am…

This is a picture of my arm on Sunday morning. It got about twice as bad by the time I dragged myself to the ER.

This is a picture of my right arm – the left arm was the infected one – post blood draws and IVs.