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!

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…

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…)

The Third Date Rule

I guess you could say that I’m back in the dating saddle, which is both a good and bad thing. It’s definitely good that I’m moving on from my past relationships – especially the one I posted about – but it’s very overwhelming to me because lupus and rheumatoid arthritis are always lurking in a dark corner, waiting to throw a kink into things.

So when you start dating someone, when is it okay to drop the “sick bomb”?

My first inclination is the sooner the better, so if someone wants to run the other way, they can before either one of us gets too attached. But because so few relationships seem to make it past the first date, maybe it’s best to wait it out. Then I got to thinking that maybe the third date is best. If you’ve gone past one and two, you’re getting somewhere. Definitely time to come clean. So in other words, I don’t know. I’m feeling very conflicted at the moment.

Mainly because this conversation gives me nightmares. I imagine it going something like this (even though I’ve really had it, and this is pretty much how it goes):

ME: There’s something I need to talk to you about, and I’m not sure how you are going to feel about what I have to say.

THE GUY: Trying to be cute, says, “Are you seeing someone else? Did you used to be a man?”

ME: No, nothing like that. (This is potentially worse)

THE GUY: Whew!

ME: I’m sick. I have lupus and rheumatoid arthritis – followed by a very laymen explanation of illnesses – and while these illnesses effect my life to varying degrees at varying times, I thought you should know so that you can make the decision to get out while you can, if you don’t think this is something you can or want to deal with.

In my last three relationships, I blew the third date rule in waiting to have this conversation. The first and third because we were quickly getting to know each other, so I disclosed prior to the first date, and the other because we had known each other for a long time before we got together, and he already knew I was sick when we started seeing each other. And maybe that’s why it was so easy for me to fall into a relationship with this person, because he already knew I was sick.

I think as much as we would all like to have faith in people and give them the benefit of the doubt, we have to be realistic about the fact that illness is a definite deal breaker, or at least it feels that way to me. And I would hate to see illness get in the way of what could otherwise be a good relationship, but I have seen relationships end over much less, so I guess that’s how it goes.

I am convinced now that the third date rule – which I came up with – really doesn’t work, if the relationship gets to that point. Men these days are relentless. Everyone wants to be your facebook friend, and text and tweet you (get your mind out of the gutter…or maybe not…), and get to know you better by not really getting to know you. And because of this “let’s be facebook friends first” mentality, guys are actually getting access to a surprising amount of information very early on (even before the first date). This is the first time that I’ve considered my blog to be a liability…

But the truth is, I’m not going to censor myself. Lupus and rheumatoid arthritis are a fact of my life. And I guess with the right person, these illnesses won’t be all of who I am. They are only a small part of me. And the right person will be able to strike a balance between the two. Or they won’t be the right person, and they’ll walk away. I guess that is a risk I have to take.

Maybe this post sounds rather doom and gloom, but I’m not convinced that this conversation goes well most of the time. In fact, I think this conversation going well is the exception and not the rule. As tough as many guys claim to be, I’m not optimistic that many of them can (or want to) deal with something like this. Although I’m learning that some can, it doesn’t mean the relationship is going to work out.

Because in most cases, the “in sickness and in health” bit is hypothetical. But in a way, too, is the above conversation. I could go into remission tomorrow. My illnesses could stay the way they are for the next 20 years. Or not. But the truth is, I don’t know… And that’s why I have to be honest and upfront, no matter how much it pains me to do so…

One casualty of illness is that I worry that I am too quick to glom on to guys who are willing to wear the illness hat, or at least try it on for size. It’s easy to see that person as being Mr. Right, even when they’re not even Mr. Good Enough, not even close. The problem is, though, that this acceptance is going to be a huge piece of the puzzle. So it’s easy to get seduced by the idea that someone is okay with the “idea” of my baggage. Because no one that I’ve been with has actually experienced a flare first hand, oddly enough.

I have to wonder, in a very Carrie Bradshaw kind of way: Has illness acceptance become a proxy for chemistry? Has “this is who I am, take all of me” literally come to mean “take all of me”?

I’m curious to know from a male perspective: When would you want to know about health issues like this, and how would you best like the conversation to be framed? Or do you trust the person you’re with to know how and when the right way to tell you is?

And from an illness perspective: What are your rules about this type of thing? And do they work or not?

(Oh yeah, and my super, hot pink medical bracelet? Can’t exactly sport that on a first date…)

“The Etiquette Of Illness”

I read this great little book, “The Etiquette of Illness,” by Susan Halpern. This book offers advice, but isn’t preachy. And some books are just written in a way that is soothing to read – this is one of them. (Thanks to the recommendation from Rheumatoid Arthritis Guy)

“It is the role of the ‘well person’ to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties” (3).

Lately I’ve been thinking a lot about what I need from people. I’ve been having a hard time dealing with a lot of things in my life, and have really had to explore the relationships I have with others. I’ve realized that while a lot of people have not done a very good job of dealing with my health issues, I haven’t either, mainly because I haven’t known what to ask for, or even how to ask for help. In order to ask for help, you need to know what you need. And that’s a hard thing to do if you don’t really like having to ask for help.

I’m learning that I have to assert myself more, because if I don’t look after myself and my health, no one else will.

“Find the words that give you comfort and teach your friends to say them […] Given the sensitivity around what to do and say, unless the person who is ill speaks out loud with specificity and care about what pleases him or her, no one will ever know” (30, 223).

For me, there’s always the battle between the person that I am and the person I want to be. If it were up to me, I wouldn’t need help, and I wouldn’t be struggling to cope, and I wouldn’t be sick.
But that’s not reality. So the people that I want in the inner circle are the ones who really want to be there (this is, I think, what Halpern calls “the inner sanctum” (234)). The one thing in my life that I refuse to tolerate is disingenuousness and fakeness. If I put time and effort into a relationship, I want it to be real, and mutual.

“Opening the heart as a receiver of love and care makes exchange equal. It is not all one person giving, one receiving. It is the reciprocity of giving and receiving that gives rise to joy” (234).

It’s sad, but some people, whether they’d like to be able to or not, are incapable of giving of themselves unselfishly. What I’ve realized is that help has to come from a place of mutual understanding. And it also has to be unselfish on the other person’s part. It doesn’t really count if they are only offering help because they have ulterior motives or expect something in return.

“Compassion occurs when we open our feelings to the feelings of another person, without judgment, pity, or a need to fix” (219).

I’ve realized that whenever anyone asks me how I am, I’ve gotten very used to saying “good” or “fine.” Not that I want everyone knowing exactly how I’m feeling, I also realize that such vague generalities do no one any real good.

For me, a major “path of least resistance” is being a “yes” woman, even when saying yes comes at the expense of my health.

I was supposed to go to Yale at the end of September to present at a conference for a professor I do work for. The way the trip ended up being, I would have been in New Haven for 30 hours, and taken a total of six flights to get there and back. If that doesn’t spell F-L-A-R-E for me, I don’t know what does. Ultimately, I begged out of the trip a month shy of going, which is not something I would normally do. But I knew that it would be bad for me, and had the potential to derail the semester (which has turned out not to be a very good one, as it is). It was an expensive lesson to learn. But it was an important one. (And the world didn’t end because I didn’t go to this conference, shocking, I know)

“A little response to chronic illness goes a long way” (129).

I think what I’ve come to realize is that you have to let those in who want to be. Now, you don’t want to rely on people so much that they become tired and worn out. But you also don’t want to stare a gift horse in the mouth. For me, being there mostly means that I can call and laugh or cry with someone. It doesn’t mean being on guard 24-7, waiting for me to call or e-mail. But it means being there when I’m really having a hard time of it.

I’m the first one to admit that this is a forever thing. And it sucks. But it is what it is. And, for better or for worse, illness doesn’t just impact the sick person. Whether we know it or not, it impacts everyone that we come in contact with.

One day, I was flaring badly. And “a certain person in my life” picked up the phone and called me. Only my parents had really done that. It meant so much, and yet, my first thought was why. Why was this person doing this? And shortly after, I sent this person a message saying something to the effect of I don’t want you to know me like this.

We’re all afraid of something. And to be so open and vulnerable to someone, to let them see you at your worst, isn’t an easy thing to do. And when actions aren’t met with the desired response, at least for me, I immediately retreat and go inward again, opening myself up to others less and less. There seems to me to be a fine balance between what is and isn’t enough and what is too much.

Lately I’ve had several people make offers of help, and follow up by telling me that they really mean it. It’s interesting that these have all been fellow people dealing with illness. And like I said, I think this is the key. The offers have to come from a place of true compassion. And even if I say no, it doesn’t mean I don’t appreciate the gesture. In fact, I may appreciate the offer more than the action itself. It’s nice to know that there are people who truly do care.

And if someone calls and you don’t feel like talking, I think that’s perfectly okay. I know that when I’m in a bad flare, and I feel like I can bend steel with my teeth, I can be kind of cranky. So that is probably a time when I might say, “I really appreciate your calling, but can we talk another time?” I think whoever is on the other end of the line should understand.

I think this may be the book’s best piece of advice to those who are a part of a sick person’s life:

“Don’t let the loving, lusting, adorable side of your friend disappear” (13).

Recently, a friend responded to something I posted on facebook that the “old Leslie” never would have done something like that. And she’s right. And it’s nice to know that certain people know me that well. That’s all I want. No matter how down and depressed (or sick) I get, I hope that those in my life can always help connect me and bring me back to myself; and can bring out other parts of me than the sick persona. Because, you know, on occasion, I can be a pretty fun person. I’d hate for illness to kill all of my good parts.

“Expressing feelings of gratitude does not make us weak; it may make us stronger […] There is something in the saying yes that carries with it a helpless feeling” (28, 47).

I would like to say thank you to those people in my life who have been there, through laughter and tears, those who have let me tell them that I’m having a bad day pain-wise, etc. Sometimes it’s easy to not consider help, help. To let people do things that seem totally appropriate for the relationship you have, it’s easy to pass it off and not say thank you. Some people may respond, “That’s what friends are for,” or “That’s what I’m here for.” But saying thank you shows those people how much you care and appreciate them in return for all they do for you.

And I’m sure, that inevitably, as my illnesses evolve and change, what I need from others will change, as well…

*****
(Halpern, Susan. The Etiquette of Illness. New York: Bloomsbury, 2004).

“A Dream Is A Wish Your Heart Makes”???

“I’m sorry I can’t help you, I cannot keep you safe

I’m sorry I can’t help myself, so don’t look at me that way

we can’t fight gravity on a planet that insists

that love is like falling

and falling is like this”

- “Falling Feels Like This,” Ani DiFranco

If this is what Walt Disney meant, he certainly had a messed up sense of humor…

I had originally intended this post to be about a rather disturbing dream/nightmare that I had come to have quite regularly. The gist of the dream is that I need a kidney transplant and there is a certain person in my life who appears to be the only match in the whole world. The most distressing part of the dream is that it never gets resolved. I never know the choice the person makes. I haven’t had this dream recently, which is good, as unfortunately, the person that the dream centered around is no longer in my life.

This is the mother of all posts. It’s one that I’ve been trying to get down on paper literally for months now. I have struggled, time and again, about how to write about the personal stuff that has been going on in my life. This is one of those posts that I’ve sat and cried while writing, every time I’ve come back to it. At one point, this post was ten pages long. But neither I nor you nor he needed to be subjected to that. (I even have a word document labeled “Director’s Cut,” with all the fodder that didn’t make it here)…

I’ve realized that while I may have briefly alluded to the relationship, I’ve never “officially” talked about it. I think at the time this was because I didn’t want to announce anything to the “world” until I knew it was a sure thing, which in the end, it wasn’t. And I also wanted to respect this other person’s need to keep things relatively quiet. But in an effort to move on, I’m breaking the silence. This is my magnum opus, my Declaration of Independence (or my attempt at it).

I went to see him on Memorial Day weekend so I’d have place to stay. And I got so much more than that. I never expected to fall in love. It definitely ranks in the top five best weekends of my life. And there was a sea change, and everyone noticed it. But in the end, this certainly wasn’t the fairy tale romance that I’d hoped it would be, though it certainly was something. And it gave me hope, for a time, that things could be better. In fact, that things could be great. I remember that one month, that we were the most connected, both physically and emotionally, no matter what, I couldn’t stop smiling. And I felt like such an idiot. This person even told me that my happiness made me more beautiful. I wanted to be happy for him. And I wanted to be happy for myself.

But all good things must come to an end, and with a crashing halt, they did. And I felt like my world ended for a minute, like it had been made infinitely smaller in a single moment. And it also made me wonder – did I feel this bad when I was diagnosed with lupus and rheumatoid arthritis? But the two aren’t comparable. The world feels different, though, different in ways that maybe only I recognize. Because I whole hog opened myself up to the possibility of something and someone other than myself.

In some ways, the relationship, however short lived, put a lot of questions to rest. Five years of subtext and stolen glances were gone in the blink of an eye. And at the time, it felt right. More than right, it felt good. I guess in some ways, the experience was a gift in that I had only ever viewed this person as a fantasy, but never in a million years would I have imagined we could have gotten together in reality. And I guess we got each other out of our systems. Or at least he got me out of his...

The first night we spent together, we slept together, but we didn’t “sleep” together. It was one of the most intimate moments of my life. I can’t even explain it. I just know that I felt safe and wanted. And for the first time in a long time, I wasn’t worried about the possibility that the world would come crashing down around me in the morning. I felt like the difficulties in my life were worth facing head on because there was someone there who cared about them, too, not because he had to, but because he wanted to (or maybe because I wanted him to).

I know the exact moment that I fell in love with him – and I’ve never even shared this with him. It was when he was sitting on the couch next to me, staring at me like a drunken puppy dog. And despite everything, he was still looking at me that way. In that moment, I felt like he really saw me, got me, in a way that no one else did. And it was in the way that he kissed me goodbye after our first weekend together. It was the kind of kiss that was tender and gentle, but sure and commanding. It could have stopped time, and I think, for a minute, it did. Having to leave and walk away from that was hard, but it wasn’t the end. That has been much more difficult and much less sure. I guess I was supposed to walk away without having felt anything. And he was hoping to fix me in a way that’s simply not possible. I don’t think he had ever thought past the present moment, and what my life would be like without him in it. And as soon as I got visibly attached, he pulled away…

When someone tells you the things they know you need to hear because they know you need to hear them, are they really being sincere?

And I have to ask myself: how many tears can you cry over someone who isn’t crying over you?

There were private jokes, and some of the hard conversations were easy to have. I learned more about him in two days than I had learned in five years. And there was more that I wanted to know. There was a profound feeling of happiness and contentment that I have never felt before. But as good as things were for a time, we also knew exactly what to say to hurt each other. And we both succeeded in doing that, as well. I’m happy that this person is happy, and has found someone that he is happy with. But I also had hoped that we could be happy… together…

I’m grateful to have been shown that happiness and life lurk somewhere deep inside of me, waiting for a chance to escape. But that’s gone now. And I don’t know if I’ll ever get it back.

Maybe the truth is that, that person never existed outside of my own imagination. Maybe I saw what I did because it is what I wanted to see. I don’t want to believe that, but I really don’t know what to believe anymore. It’s hard to move on, even when the other person has in very obvious ways. It doesn’t make it any easier. I think we were both guilty of seeing what we wanted to see, of seeing in the other person a person that didn’t completely exist in reality.

And maybe this is truly the way things are supposed to be. Maybe we are on different pages of the same book. Two people who deeply care about each other, but nothing more… Or perhaps we are two different books from completely different genres, whose stories happened to collide in a verbal stew both beautiful and grotesque.

Illness, and life in general, are like this too. There’s a lot of physical and emotional pain that comes with illness. But there is also a lot of wisdom. And we wouldn’t be people, and we wouldn’t really be living, if there weren’t both good and bad parts. It’s just that some of the bad things take longer to accept than others.

Ultimately, I don’t want a “partner in despair.” And no matter how I was feeling, he managed to make me laugh, and it was the silliest things that brought on these moments of connection, moments that were never had with anyone else. But then there’s the idea that I am permanently flawed in a way that I’m not sure either one of us will ever truly be able to get past. And that’s my fault as much as it is his. I want someone who looks at me and doesn’t think I need fixing.

“I never thought I could love anyone but myself
Now I know I can’t love anyone but you

You make me think that maybe I won’t die alone

Maybe I won’t die alone
What have I become?

Something soft and really quite dumb

’Cuz I’ve fallen, oh, ‘cuz I’ve fall-fallen, oh ‘cuz I’ve fall-fall-fallen

So far away from the place where I started from”

- “Die Alone,” Ingrid Michaelson

*****

“[…] I never thought that I

Had any more to give

You’re pushing me so far
Here I am without you […]”

- “Love Remains The Same,” Gavin Rossdale

And while he was there in spirit, we were never together when I was flaring. And there’s a part of me that wonders if he would have been able to handle that. I have to believe that the relationship didn’t end over illness. And maybe it’s good that it ended when it did so that he never had the opportunity to end it for that reason.

It’s funny because in my relationship prior to him, I found myself flaring all the time. And that was a pretty clear signal to me that, that relationship wasn’t going to work. But I don’t think he ever caused me to flare. And I think that’s something that worried him a lot. If we fought, and I went into an emotional tailspin, would I flare? And if I did, would he be responsible for it?

Maybe the truth is that the first love brings with it the greatest hurt. Because when it’s gone and you know it’s over, there’s no way of getting it back. It’s something that can’t be undone. And it’s especially hard when the other person doesn’t love you back. They say they care about you deeply, but it’s not love. And they don’t think it ever could be…

Why does it feel so bad to want to be a part of someone’s life who will never be who and what you need them to be?

It is in this moment that all of my illness related insecurities come to bare. I don’t think I can handle dealing with this shit by myself forever. And I worry that I’ll have to and I won’t be strong enough to do it. I don’t want to be 40 or 50 years old and have my parents be the ones that are there. I want a person, my person. Someone who thinks I’m worth fighting for, despite the baggage I bring to the table. I can’t look at what my parents and friends have done for me and push it aside. Because they have really come to help and support me. And yet, the one person I most want to be there isn’t, not even in spirit, and I don’t know if he ever was. And this is the part that hurts the most; the want, the longing, the unfulfilled need. The feeling of having been empty and now feeling emptier.

What I realize now, is that I deserve someone to be that person for me, as I will be for them. But I don’t want to mold someone to fit that role because I need them to. They have to want to. When I meet the person that I’m supposed to be with, I’m going to be all in, I’m going to put all of myself into that relationship, because that’s something that not even illness can take away. And I don’t just want this for me. I want to be that person for someone, too, because I know I can be. Because I feel like I have so much love to give. And I would have given it to him, if he would have let me.

Maybe this would all be easier if this was some guy I had met off the street. If there wasn’t the history of knowing him for five years, of doing an on again, off again dance for nearly a year, and for being together for several months. Because what I miss the most is knowing that he’s there, even when he’s not, and not having to be ashamed of calling or e-mailing when I need/want to.

There are a lot of things I miss. I miss his number popping up on my caller ID. But mostly, I miss the feeling that I am not alone in my struggle for survival; the feeling of someone else caring, someone who doesn’t have to care, makes it all seem worth the physical and emotional pain of being sick. It’s ironic because some days, lupus feels easy compared to this. It’s much easier to harbor anger at an invisible foe that you may never truly know than at a real person.

And it truly pains me to say that there is something that has hurt and damaged me more than illness has. Because unintentional hurt can be the worst kind. He thought what he was doing was the right thing to do. My life wasn’t going well and he “felt bad for me.” And I thought that my actions and feelings were right, too. So were we both wrong?

The truth is, the healthy me probably never would have taken a chance on him. I probably never would have opened myself up to the possibility of him and I. But the drawback of risk taking is that when the risks don’t pan out, it hurts worse than before. Because illness magnifies everything. The slights hurt more, but the good feels better than it did before.

He says I can still share things with him without him judging me. But wasn’t rejecting me as a romantic partner the ultimate judgment?

I really thought things could work with him. He is strong in places I’m weak, and I think I’m strong in some places where he is weak. He’s emotionally closed and I’m emotionally expressive. Maybe it never would have been enough for me. I can’t apologize for feeling too much, just as he can’t apologize for feeling too little.

A lot of people said they thought it would be more than it ended up being. And a lot of people said that he was only capable of hurting me. I don’t know if they were able to see beyond the significant age difference between him and I. I guess I was hoping that he would prove everyone wrong.

Do I wish I was still with this person? In some ways, yes. Do I wish I wasn’t sick? Yes. But these “yeses” are non-issues, because they are things that can never be, no matter how much I wish they could be. So, just as I’m never going to be romantically involved with this person again, I’m never going to be “healthy”. And that’s a reality that I have to own up to.

Lately, I feel like I’m undone, coming apart at the seams. I feel like at any minute the final blow will be hurled at me and that will be that. It will all be over. I won’t have the strength to go on. And right now that’s how I feel. I’d like to think that I won’t always feel as bad as I do right now, but there’s no sense that this is going to get easier. And I know it only seeks to negatively impact my future relationships, so if for no other reason than my own sanity, I need to move on. And everyone, including this person, has told me that I do. And it’s easy for him to tell me to move on. He’s the one who dumped me for someone else, not the other way around. So, this post is a large attempt in an effort to do just that.

Just as there are some things that illness can’t kill, there are some things that even failed relationships can’t take away. Like learning that I have the capacity to really love someone else, even if they don’t love me in return. And even when their spurning causes me some of the greatest hurt I have ever known, I am still able to love him as a person…

I’m the kind of person who feels like I need tangible memories for something to be real. But the truth is, what I have is the most tangible thing of all. What I take with me is the person that I am today, a person whose life has been shaped, in some ways, by someone else. I took a flying leap when I decided to let this person into my life as more than a friend. And ultimately, it didn’t work out. But that doesn’t mean I’m left with nothing. What I realize now is that I may have been alone before, but I’m not alone now. Even if this person is out of my life (at least romantically), there are parts of them that I will take with me. If I hadn’t had this experience, I wouldn’t have anything to take with me. And that’s something, no matter how you look at it. For better or for worse, we are impacted by those who are a part of our lives, even if for only a short time. I guess all I want is to know that I meant something in his life, because he knows that in a profound way, he meant something in mine. (And in case you were wondering, this person did read this post prior to my posting it...)

This is both the beginning and the end. Sometimes the cure is worse than the disease…

“Now don’t forget me

Please don’t forget me

Make is easy on me just for a little while

You know I think about you

I hope you’ll think about me too

When we’re older a little slower it doesn’t matter now come on get happy

’cause nothing lasts forever but I will always love you”

- “Don’t Forget Me,” Macy Gray

Can Our Doctors Trust Us?

Many of my posts as of late have been colored by my experience of being hospitalized. So you’re probably thinking, wow, she spent three days in the hospital and is suddenly pro-doctor? Not quite…

But I will say that all of the doctors I encountered in the hospital were very nice, and I do feel as if I received a high quality of care. But it got me thinking about the fact that, in some ways, the doctor is only as good as the patient, and the doctor-patient relationship needs to be a partnership (of equals, in the best case scenario).

As I’ve started to get my medical info organized – my original binder is inches thick full of medical records and is no longer practical – I’ve realized that without having much information with me, I’m not sure that my reports to doctors could have been trusted 100%, or that the story was reported consistently and identically to every doctor I encountered (and there were many of them).

This is not to say that I purposefully lied to doctors, which I didn’t. But coming into the ER with a fever, being alone and nervous, and then being pumped with high doses of antibiotics, was my word really worth the weight it was given?

Now don’t get me wrong. I’m the patient and I know my situation the best, but in the absence of something concrete to give to doctors, how do I, or they, know that they have all of the information they need in order to give me the best care?

As an example, the longer I was in the hospital, the foggier the timeline became from receiving the pneumonia shot on Friday morning to ending up in the ER on Sunday afternoon. And this is reflected in the story that is outlined in the copy of the records I was given of my hospital stay. Reading it now, I think, well, that’s not exactly how it happened…Close enough, maybe, but not perfect…

And accuracy will become increasingly important the more complicated my medical history becomes, which it undoubtedly will.

And I say this even when I have my parents listed under ICE (“in case of an emergency”) in my cell phone, and I have a note in the ICE that says to check for the medication list in my wallet.

We, or at least I, have a tendency to put the responsibility squarely in the lap of my doctors. They are, after all, the “experts.” But I’m realizing more and more that it is increasingly important for the patient to be an expert, too. This can be difficult when you don’t know how your body will react to certain things, but being the arbiter of the most information possible means that there’s less of a likelihood that you will slip on things, and therefore, less of a likelihood that your doctors will (especially in the case of being in the hospital and seeing mainly doctors that you are not familiar with and who are not familiar with you).

So aside from trying to put a manageable binder together of my most relevant medical information, I also took the plunge and purchased a medical alert bracelet. I had been avoiding such a purchase because a) they can be relatively pricey, so it is somewhat of an investment, and b) it actually means admitting for real that I am sick.

But this purchase is an investment in my health and my life. It covers my butt in the event that I cannot speak for myself and need medical treatment. One thing that has been stuck in the back of my mind is what if something happened to me while I was teaching? While I would hope that as college students, my students would at least have the presence of mind to call 911, that’s the most I could expect from them. And in the event that I end up in a situation where there is no one around to speak for me who knows my health issues, I need something that will speak for itself.

The bracelet I purchased is Velcro. It came with a little waterproof strip that you can write your name, medications, doctors, and important phone numbers on. The strip fits into a pocket on the inside of the bracelet, which can easily be pulled out if necessary. Plus, it’s pink. Need I say more?

I purchased the bracelet from Lauren’s Hope*. This website has many different versions of medical alert bracelets, many of which are made to look like everyday jewelry. While these were somewhat tempting, I went for something that was more clearly a medical alert bracelet. The whole point of wearing it is to make sure that there is no question that I get the best care possible, with my medical issues and medication understood, even if I am not physically able to get this information across.

In many ways, the thought of being incapacitated is scary. But it’s even scarier to think of all of the information that would be lost/unavailable in such a situation. But then again, that’s the point: to be prepared for situations that you can’t prepare for.

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

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…

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…)

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…

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.

Worst Case Scenario...Maybe Not...

Yesterday I had an appointment with a new doctor. I believe we are on Dr. H at this point, although I honestly don’t remember anymore… So Dr. H it is…

Dr. H is an uber-specialist. What do I mean by that? She comes highly recommended. I’ve only ever heard good things, and she is nearly impossible to see. It was Dr. C, my rheumatologist, who got me an appointment with her.

Dr. H is a gastroenterologist. I started seeing Dr. D (when I first got sick), also a gastroenterologist, but he was a liver specialist (and it turned out my liver was fine), and Dr. H is known for all things related to the stomach/intestines.

I’ve been having various gastrointestinal issues for a while now. Some that I’ve tried to ignore, some that have gotten progressively worse. It appears that the main concern, as it often seems to be, is that one autoimmune disease tends to bring others with it. So given my history, there is the potential of something autoimmune going on beyond lupus and rheumatoid arthritis, related to the gastrointestinal area.

In the back of my mind, for me, the worst case scenario regarding this appointment would be being sent for a colonoscopy. And, well, that’s exactly what I got.

Now I know, in the grand scheme of things, this is a simple outpatient procedure. Drinking some gross stuff, mild sedation, and two to three hours of my life. That’s it. Easy-peasy.

But I don’t know…

As the woman at the check-out desk attempts to schedule me for the endoscopy and colonoscopy, the power goes out (seriously – I swear, I couldn’t make this stuff up if I tried).

Is that a sign that I should run away with my innards still intact and unexplored?

In the end, I don’t run. I sit there, on pins and needles, thinking how ironic it all is. The nurse is being super nice to me because she knows the procedure she’s about to schedule me for is usually reserved for people at least twice my age.

And it’s ironic that it’s the age factor that bothers me the most, and not the fact that someone’s going to stick a camera up my ass…

The good thing is that Dr. H seems super nice, and she will be the one to do the procedures. In many ways, it seems like this is the most prudent thing to do. But I’d be lying if I said I wasn’t nervous and apprehensive about this, because I am.

The whole lack of control thing definitely comes into play here. As the education nurse reviewed all of the paper work and information about the procedures with me, I laughed to myself at the fact that it says you shouldn’t try to walk home from the hospital after a colonoscopy (go figure!).

But that would be me. I’d probably try to walk home from the hospital just to prove that it can be done. But alas, they won’t start the procedure if your designated driver/responsible adult isn’t present and they won’t let you leave without them, either.

So there it is. This is going to be good. It’s going to be great. Well, maybe it’s just going to be fine…

“Below Zero”

It’s just about two and a half weeks into the semester, and already I’m feeling exhausted and drained. I received a link to the following documentary, by Claude Parker, from the leader of one of the support groups that I am a part of. The documentary is about living with lupus and rheumatoid arthritis*.

One of the women suggests that having lupus and/or rheumatoid arthritis means that you are always starting “below zero”. You are always starting at a “deficit”. And I think this is a very fitting way to describe what it means to be dealing with such illnesses. No matter how much sleep I get, or how much or little I do, I’m always exhausted. I’m always relying on my reserves to get me through. And sometimes my reserves run out before I want them to.

All of this is to say that I am working extra hard to stay rested and not get too run down, so I can avoid getting sick in the midst of what is promising to be a crazy flu season.

And with a new school year (or semester), comes a new group of people to decide whether or not to disclose to. Because of the things I’m hearing about students getting sick already, and the potential of widespread illness, I do plan to disclose to my professors that I am chronically ill, and in the event that I do get sick, it could hit me harder than it might hit other people.

I hate having to operate on “what ifs”. It makes me feel like I’m sealing my fate to get sick by saying it. But on the other hand, I’ll be in worse shape if I don’t say anything, and I do end up getting sick (and have to miss school).

Right now, I feel like I’m at a double disadvantage. I start out at below zero because of lupus and rheumatoid arthritis. And I’m also at below zero because I’ve hit my limit. Right now, I feel as if I am below zero in every way possible…

I’ve realized, given recent events, that much of my time in grad school has been spent losing sight of what’s really important – me. I matter, and I’m worthy, and there are no letters in the world behind my name that can live up to that. I have to do that for myself. And I’m not sure I can do that here.

I want to live my life with no regrets. I don’t want to make the same mistake twice. And when I do make mistakes, I want to learn, grow, and become stronger as a result. Right now I’m unhappy. I am full of internal conflict, and I feel like my insides have been twisted together in knots.

More than anything, I want to be true to myself. And that means that in the end, I want what I do to improve the world. I want what I do to matter. And I want to be a good person and matter to others. I didn’t come to grad school so that I could get published in the top journals. I came to grad school so I could help heal the world. But in order to make a difference in the world, I have to heal myself first.

I’ve also hit my limit in fighting with myself. I’ve tried really hard over the past few years to strike a balance between my school and personal life. And not only have I failed, but others have failed, as well.

It has come to my attention recently that there are people who think they know what’s going on in my life, who absolutely don’t, even though they think they would like to. And I’ve found out that there are other people who ask my friends how I am doing or if I am okay. It’s funny because I never knew these people had any idea what was going on with me (and I’m not sure they really do). You know, I’m not going to volunteer that I am ill to everyone in the sociology department, in the context of the department. But if anyone ever came to ask how I felt or how I was doing, I surely would have answered them and provided them with any information they wanted. I don’t think I’ve actively tried to conceal being ill. I just haven’t been “out” to everyone because the response I’ve often received has been negative, telling me I shouldn’t aspire to an academic career, or that I’ll be a more “empathetic” sociologist because I am sick. I wonder how differently I would feel about things now if more people had actually made an attempt to care. I wouldn’t feel so alone, and I probably wouldn’t feel as conflicted as I do. But one thing is for sure. I don’t want to be here right now.

I know that the decisions I currently face are difficult ones. But I am confident that I will be a stronger person having asked myself and attempting to answer the tough questions. I have always delighted in proving others wrong when they have doubted me. But I realize now that, that is not a sufficient reason for staying in grad school. Finishing simply to spite those who suggested I couldn’t or shouldn’t do it is not a valid reason for spending at least three more years at a place that I feel does not respect the person that I am or the person I hope to become.

I don’t think leaving permanently is an option. There was obviously something about sociology that spoke to me, my first day of my freshman year of college, and there was something about sociology that I kept coming back to, no matter how crazy or difficult things were as an undergrad. I had hope then, and I felt like what I was doing mattered. So what gives now?

I found out that I passed my preliminary examination. While this is something that I should be celebrating, I’m not. This monumental event is overshadowed by sadness and confusion. Do I belong here? (I mean, I passed my prelim, right? That says something) Did I make the right decision in deciding to go straight to grad school, and not stopping at all through illness? Sure, I’m happy that I passed. (I was so worried about failing, that I was nauseous while preparing to open the envelope) But in the back of my mind, I also think how much easier the decisions I face would be if I hadn’t.

I feel awful voicing this. It makes me sound ungrateful about the opportunities I have been given here. And that is certainly not the case. But in order to feel accepted and approved of, a person shouldn’t have to conceal who they are, or feel that they have to squelch something that is so much a part of their life.

Living a double life has always been exhausting, but these days, it’s more than that. It’s taking energy that I don’t have to give…

And I know that a lot of what is going to come from my friends is that I’m stronger than I give myself credit for. And I’m sure they’re right. But illness has also taught me that sometimes being strong means knowing when to say “I can’t”…

* Even if you don’t have lupus and rheumatoid arthritis, I would recommend taking a look at this documentary. It’s very moving.

Guest Blogger: Maria Pfeifer

I think sometimes other people say things far better than we are able to express them ourselves. Today, I’m happy to share my blog with Maria Pfeifer. Maria is a fellow blogger with lupus. She is the coordinator of “My Life Works Today! A Living, Learning and Lupus Network.” For more information, visit http://mylifeworkstoday.com/. When Maria shared this post with me, I was struck by the sheer honesty of it. And I think she expresses feelings and brings up issues that many of us face, but are unwilling to admit to. Without further adieu, I give you Maria…

*****

I have had a rough couple of days. With last week’s remembrance of those we lost on 9/11/2001, it all seems so trite and embarrassing, really.

I have noticed a change in how I respond to events, circumstances and even people that are in one way or another ‘threatening’. Not the obvious stuff like imminent danger or in-your-face reactions. I’m talking about the uncomfortable, unseen and unnecessary conflicts that I’m feeling less able to avoid these days.

I thought not having control over my immune system’s erratic responses was going to challenge me the most. What has happened, over time mind you, is that I’m feeling more confident in not having health care in case something happens to me, and more vulnerable to forces around me that are as deceiving in their ‘beneficial services’ as my immune system!

For example, the internet. I have been struggling to figure out how I really feel about it. Having the access to information, people and opportunities is very important to me. The problem is, everyone who is out there to make a buck or interfere with what I want to accomplish knows how important it is to me. This isn’t new – I realize that. What concerns me is just how dependent I’ve become on having it and how easily my life comes to a screeching halt at the very hint of viruses, hackers, server failure, or my own operator stupidity. The reliance on Twitter, Facebook and other sites to affirm that what I want to say and do is dependent upon approval, Retweets, friend/follower acceptance and requires constant input. Or does it?

Blogging has become a valuable source to connect, find and discuss issues pertaining to lupus outreach – what I do. Lupus is not just what I have - it is what I do and THAT makes it a part of who I am. While doing the usual maintenance and management work, I noticed the ever-present theme of not being able to write. Why? If it is so important to do and be what I see myself accomplishing, then what makes it so difficult? To not blog doesn’t feel like an option, and I seem to have developed a perverse reliance on Twitter, Facebook and other sites to affirm that what I want to say and do is dependent upon approval, RT’s, friend/follower acceptance and requires constant input. How did that happen? I consciously know better, yet I have allowed this seemingly fun and available medium to communicate become toxic to my very being.

Answering the phone – I just don’t do it anymore. Yes, I screen – otherwise I would be up every ten seconds. I have put myself on lists only to have them hitting my cell phone, too. The constant email spam is easier to deal with, but both phones have become more liabilities and nuisances than they are helpful for me. I resisted a cell phone for years and still cannot justify the cost only to say that at least I can find my kids easier in an emergency.

The healthcare debate. Community Town Halls, media coverage of all forms, my representatives in who I have placed a great amount of trust to know what I need. The insurance and pharmaceutical companies. Just the other day, I received a bill from a physician’s assistant who saw my youngest for a physical to play volleyball. I learned that my daughter received a vaccination I had already refused to have given to her. There were tests ordered for EKG’s and ‘thorough’ lab panels due to concerns about extremely high cholesterol (229 at 14 years old?!) and an irregular heartbeat that has never been detected before. Yet, she was given a clean bill of health to play at that level knowing these concerns. Huh? I went in and questioned the reasoning, was assured I had it all wrong and walked out of there without agreeing to any tests – the P.A. finally conceded that a ‘watch and wait for six months’ would be “fine”. Yeah, I know. Imagine how much money I saved and how little you got kicked back to you. Since when did receiving proper health guidance become a competitive sport?

I firmly believe in the “less is more” approach to living. The problem is that I am finding that I have less ability to choose what I want and don’t want to bring in to my life. I want to decide whether I will pay the bill on the 15th or the 30th...living so close to the edge requires flexibility. Yet, I can no longer go to my dentist of 20+ years with good payment history – I have to pay up front before anything is done. I have had my credit card for about 27 years with the same company – I have been an excellent client, yet I closed it because they decided to ignore my history and make that added option ( if things got rough) into a threat to my financial survival.

There are countless ways in which I am feeling more pressure to see the potential harm that these ‘helpful’ sources can cause me – and I am losing any ground in avoiding them. If banks go 100% online (they are now beginning to charge for using any paper), then I have to have the internet. If I have the internet, I am open to a whole lot of people out there looking at their own needs, not mine. If I go through my days having to watch my back to thwart something coming out of left field, I physically respond causing my lupus to flare. If I flare, I have no healthcare to help me through it. If I loose the health I have, what good is what I do and who I am anyway?

I thought losing control over my health was enough to make me lose sight of the person I wanted to become. Today, I am getting the feeling that having lupus was only the beginning of more to come. Gloom and doom aside, I know there is plenty of joy in this world to be had, but I am getting so tired of having to dig for it as deeply as I seem to be. The remembrance of 9/11, a week ago today, reaches farther than that single day eight years ago – we need to recognize our true vulnerability and how we are not the country we used to be, nor are we truly the top of the food chain…

Just ask any virus you come into contact with…

*****

Thanks, Maria, for sharing your insights with us!

“The Enemy Is Your Body”

This past weekend was a rough one. I did the lupus walk, which I wasn’t really looking forward to, and a few hours later, I found out that a fellow graduate student in the sociology department unexpectedly passed away.

It’s hard to write about both of these topics simultaneously, but they are related…I promise…

First, I will say that I am conflicted about these walks. On the one hand, I am grateful that at the present moment I am healthy enough to take part. However, the whole celebratory atmosphere is a little too much for me to handle.

What exactly is it that we are celebrating?

The woman organizing the walk called me a few weeks ago to introduce herself, see if I needed help fundraising, and to ask if I was “looking forward to the walk.” Now isn’t that an oxymoron? Am I looking forward to a walk that I wouldn’t be doing if it weren’t for having a disease that I don’t want and didn’t ask for?

I’m not asking for pity here. But is this really a serious question? How am I supposed to answer that?

The walk, itself, was good. It was nice to push myself to attain a physical goal – to do the full, three-mile walk. I know for some people that’s nothing, but for me, it’s a lot. We really lucked out, it was a gorgeous day, and the park where the walk was held was absolutely beautiful.

The only problem with the walk was the doctor from U of M who spoke (keep in mind this walk was not sponsored by the University (as far as I know), and was in fact held near where my parents live). The doctor kept digging deeper and deeper into sentiments that I can only describe as anti-patient. One thing said was that if patients are so interested in new drugs specifically to fight lupus, they have to be willing to enroll in clinical trials. Yes, because donating our bodies to science is of course the answer to all of the problems in the world. I think not.

The other thing said, as the title of this post suggests, was that “the enemy is your body.” I have a hard time with this for several reasons. First, if my body is the enemy and the point is to destroy/kill the enemy, well, you know where I’m going with this… Also, environmental factors, among other things, have been implicated in many illnesses. Therefore, the enemy actually lies outside the body.

Honestly, I was really tempted to tell this person to shut the hell up and get back to the lab where they belong. I know, I’m being blunt, but this is the exact sentiment I’ve been trying to get out of my own head for the past two years. I am not to blame for my illnesses. I did not cause them. And I couldn’t have prevented them. And it’s insulting, and a sad reflection on the medical system that this is the way that doctors view their patients.

I actually think that the enemy is a medical system that treats 20, 30, and even 40-something patients as if they are immortal. Serious symptoms are downplayed, diagnoses are made at later stages of illness, that could be dealt with, but are instead found much too late.

The enemy is a medical system that despite its advances, has not advanced far enough. New strains of diseases are found, worse than the last, complex illnesses evade diagnosis, and illnesses that are known but not well understood evade cures.

The enemy is also an insurance industry that is not available to all. HMOs and managed care organizations that require referrals, increase wait times, and create an ambiguous chain of command - that is the enemy. Our bodies are our bodies. Our bodies are not the enemy.

*****

So how does this relate to the devastating events that occurred this past weekend? The person that passed away was an incredibly intelligent, talented, 32-year-old mother of two young children. This is one of those times when all you can say is that life isn’t fair. I was at her dissertation defense at the end of May. And now she’s gone… Apparently, she was diagnosed with inflammatory breast cancer two weeks ago, began chemotherapy on Friday, and died on Saturday.

While I’ve heard stories on primetime news shows about people who are diagnosed with rare, aggressive forms of cancer and die very quickly, I’ve never actually known someone that, that has happened to. And I preferred not knowing anyone.

I think the immortality complex that plagues the medical system is something derived from society-at-large. In grad school, for instance, we are made to push ourselves through an academically rigorous program, sometimes comprising ourselves and our health because we are young, we are supposed to push ourselves to the bone and never look back. So symptoms are attributed to stress and ignored until they reveal themselves to be much more than we bargain for. The main point here is that there is too much needless and senseless death and destruction of life happening. Young people are not supposed to die from horrible diseases.

*****

And as I’ve been reading in the disability literature about “poster children” and “super crips,” I get the sense that the people who are ill who take part in these walks are those who are either exceptionally high functioning, or exceptionally low functioning. I think the majority of people in the middle, who fit the “norms” of the illness, are left out.

The human element, which walks and telethons so much attempt to capture, is, I think, lost in the shuffle. The body is reduced to being seen as the enemy, as a set of symptoms that make up an illness, not as inhabited by a person who has thoughts, feelings, hopes, and dreams.

I don’t want to say that I lost sight of the big picture, but I think we all tend, at times, to crawl into our own little, insulated world, and this person’s passing made me climb out of mine. I don’t know how else to say this, but lupus isn’t looking so bad at the moment. I know that it is impossible to compare suffering, and that’s not what I’m trying to do, but I think the fight is bigger than you and I. I think it transcends illness type. It is about a system that is broken and is in desperate need of fixing.

More than anything, it’s scary to be a chronically ill person, and to see young people die, people too young and too wonderful, taken before their time.

My heart goes out to the family and close friends of this person. This is a great loss to our department, and I have a feeling it is going to take quite some time for the department, as a collective, to overcome this loss.

Patients For A Moment, Vol. 1, No. 7

Don’t hate me, but I’ve decided to have a little fun with this edition of Patients For A Moment and pay homage to Michael Jackson. I’ve organized the submitted posts around several popular MJ songs.

Why? Well, aside from the fact that MJ can be considered a musical genius, amidst other questions about his character and past, the most interesting thing to me is whether or not Michael Jackson had lupus. So I’m not making any judgments here for or against MJ as a person, but the idea that he may have had lupus makes a lot of sense and resonates with me, a fellow lupus sufferer.

So all that aside, on with the show…

*****

“ABC”

“[…] ABC

Easy as...

123 […]”

Since it’s back-to-school time, I figured I would open this edition of PFAM with a back-to-school themed section.

Chronic illness is, above all, a learning curve. There are lessons that undoubtedly come out of, and are learned from, the chronic illness experience. Some of this knowledge is about ourselves, some is about others, and some is a combination of the two.

Jenn from Fibrologie tackles a topic that is important to myself and other students, as she addresses the pro’s and con’s of utilizing the “Disability Office On College Campuses.”

Helen at Pens And Needles takes heed of her own experience with juvenile arthritis and offers “5 Pieces Of Advice For Parents Of Children With JRA.”

Jenni Prokopy at ChronicBabe offers up “30 Things You May Not Know About My Illness: Fibromyalgia,” in honor of National Invisible Chronic Illness Awareness Week (which is September 14 to 20, 2009).

Lauren at Novel Patient explores the positives of Art Therapy, even when she’s not feeling her best.

“Don’t Stop ‘Til You Get Enough”

“[…] Keep On With The Force Don’t Stop

Don’t Stop ‘Til You Get Enough […]”

While illness might stand in the way, these patient bloggers suggest ways of moving beyond.

Barbara Olson at Florence Dot Com laments the time “Before There Were Rapid Response Teams,” when her involvement in her son’s care was not seen as being an asset to his medical team. But she was undeterred, and suggests that others should remain steadfast in their convictions, as well.

Stephanie over at Head Wise discusses the difficulties of admitting weakness and asking for help in the post “The Falling Of Pride.”

Kate Burton from the blog After Cancer, Now What, looks at how insurance companies try to charge patients above and beyond what is their responsibility to pay, in the post “Billing In The Balance.”

“Heal The World”

“[…] Heal The World

Make It A Better Place

For You And For Me

And The Entire Human Race

There Are People Dying

If You Care Enough

For The Living

Make A Better Place

For You And For Me […]”

Simply put, where there are patients, there are also doctors… (and unfortunately, that’s not always a good thing)…

Kairol Rosenthal at Everything Changes asks an important question of patients: Have You Ever Fired A Doctor? She suggests that there are different rules when it comes to making the decision to fire a primary care physician (PCPs) as opposed to a specialist.

In the post, The Right Stuff, Rachel B at Tales Of My Thirties talks about the importance of achieving balance between everyday life and illness.

Lisa over at New Knees For Lisa asks the question, “Who’s Between You And Your Doctor?” in her post about the power of insurance companies and the perils of the medical marketplace.

Lisa, the Queen of Optimism, praises her primary care doctor, while she laments the poor treatment of a specialist, in the post “Exam Report By Patient Q.”

“I’ll Be There”

“You and I must make a pact

We must bring salvation back

Where there is love, I’ll be there

I’ll reach out my hand to you,

I’ll have faith in all you do

Just call my name and I’ll be there

And oh – I’ll be there to comfort you […]”

Several of the posts address the importance of other people in the chronic illness experience.

Laurie Edwards of A Chronic Dose explores the uniqueness of the online chronic illness community, and suggests how much sweeter in-person understanding can be as a result, in the post entitled “Beyond Memes: Public Versus Private.”

Aviva over at Sick Momma writes poignantly about how difficult marriage can be, and what it takes to keep a marriage together despite chronic illness in the post “On Marriage & Chronic Illness.”

Maureen Hayes from Being Chronically Ill Is A Pill reminds us to keep our caregivers in mind and to appreciate all they do, in the post “The Caregiver Role.”

Barbara Kivowitz, In Sickness And In Health, shares one reader’s story of the frustration and pain that can ensue in being a caregiver, in the post “Well Spouse Caregivers: Do You Ever Say, ‘Enough!’.”

*****

Hope you enjoyed this edition of Patients For A Moment.

And since the show must go on, the next edition will be hosted by Kerri at Six Until Me.