Illness Doesn't Rhyme With Romance

Another failed romance just in time for Valentine’s Day…

If you’re a reader of this blog, you know that one thing I really struggle with is relationships with men.  I really didn’t start dating until after I got sick, which I think has caused the two things to become inseparable for me.  It’s like I can’t look at one without examining the other.

For me, graduate school has been overwrought by my health issues.  Plain and simple.  How could I fully enjoy grad school when my entire time here has involved re-inventing my life?  It has been a constant struggle, but I’ve managed to stay afloat.

I can’t really say that as far as romantic relationships are concerned. 

I met a guy at a friend’s party.  We met within the first five minutes and literally spent the rest of the night talking.  I’ve never had such an instant connection with someone before.  And it was really nice to meet someone in-person first and not online.  And we began what would turn out to be a very short-lived relationship.  He was the first graduate student I’ve ever dated, which I guess is kind of weird.  It was nice to feel like we were in the same place in our lives. 

And I had a moment with this guy.  A moment of absolute truth.  I’ve never felt so vulnerable in my whole life.  And I’ve never voiced these feelings out loud to anyone before.  It was me, completely laid bare, laying it on the line, and having to be okay with the results of my brutal honesty.  “I’m so pissed off right now.  This fucking sucks.  Why can’t one thing just be normal?  Am I really worth all of this effort?”

I said it, and didn’t want to eat my words.  I said it, he listened.  And comforted.  And that’s not why things ended. 

Getting hurt hurts.  It’s not fun to realize that you just entered that conversation.  That things are ending.

A loss is a loss.  You’re brought into someone else’s world, if only for a brief moment, and then that’s it.  And what do you do with the thoughts and feelings that occurred during that time?

Since my ex-boyfriend dumped me a year ago, for me, dating has been a series of missteps after missteps.  What if I’m alone forever?  What if my ex-boyfriend was the best, closest thing to love that I am ever going to get? 

I realized something recently.  At one point, I would be intimate with someone only after they knew about my illnesses.  Maybe I feel this way because I’ve shared something so deep about myself, that it’s okay to bare it all.  But what happens, then, when you want a relationship to move forward, but you don’t feel like disclosing?

That’s not really the issue here because I got a call from my doctor when I was with him.  He could tell that I was distressed by the phone call, which was to tell me about abnormal labs.  So the circumstances required that I be honest with him. 

Again, I’m reminded that just because a guy is okay with the illness baggage, for one, it doesn’t mean he’s the one, and two, the relationship has to last long enough that that treatment turns into behavior and action. 

I think a lot of people look at me and see someone who is fiercely independent, that doesn’t need a man.  And the truth is, I guess I don’t need one.  But I want one. 

But the reality is, I cannot be spontaneous in the way that other 20-somethings can.  I have meds to take and things that I have to think about that take precedence over movies and dinner dates and sex.  I talk more about this in my HealthCentral post this month, on Sex and RA. 

All that said, I celebrated the single girl’s Valentine’s Day, complete with chocolate, strawberries, and the usual side of meds. 

But I am more than this moment.  And I am more than these illnesses.  And someday, I will meet someone who sees me and loves me for me.

(As for the most recent labs, my rheum thinks that it’s because of when I had the labs drawn and when I had taken Methotrexate.  I honestly don’t believe that theory because of how high the liver enzymes were, but if he thinks I’m fine to stay on MTX for now, I’m not going to argue, because it’s working.)

When Chronic Illness Gets In The Way (Or The Third Date Rule Revisited)

My last post was about a recent flare. It hit me pretty hard for a few days, and has seemed to level off a bit. That’s not really what is wearing on my mind, though.

It’s been about two months since my boyfriend dumped me. I say it that way because that’s the way it happened.

It feels like so much longer, but I guess that’s because when you go from spending everyday with someone and they are no longer there, it does make time drag on.

I wish I could say that I’ve stopped thinking about it, but it’s the background music that is always playing in my head. And it’s making me crazy.

We met a few weeks after the breakup happened to talk about things, because I felt I deserved closure. But I got nothing. NOTHING!

Lately I feel starved, but it’s not food I’m craving. It’s answers, understanding, and other things that I may ultimately never obtain.

*****

There’s part of my dating experience that I haven’t shared. Around the time that I met my now ex-boyfriend, I had been dating another guy. Things were going fine with him, but ultimately, I felt more of a connection with the man that I just finished spending over a year with.

This other guy was fine, other than one major flaw. Before Facebook tightened its security, by virtue of his friends having mutual friends with me, he was able to view my profile, found out about my blog, and ultimately, found out about my illnesses.

When the third date came around and I disclosed to him about my illnesses, his response was that he had known I was sick before we went on our first date.

As I told this person, his friend had no right to do that. It wasn’t his news to tell.

Now only MY friends can view my information. By virtue of online dating, I do not share my last name, and will NOT be Facebook friends with someone unless we are actually dating.

By virtue of blogging, I am obviously open about my illness experience. But it’s one thing writing to an audience of other chronically ill people, it’s another thing to be writing for potential suitors (Suitors? Really? Mates?). Each post is a snippet of my life. I do think it’s easier in some ways to read the words that I have written than try to explain the intricacies of life with illness out loud. I guess I’m just better at expressing myself in writing.

*****

In thinking back to my last relationship, maybe I was once again seduced by the fact that this guy was okay with the illness stuff. It was very hard for me to tell him, in the beginning, because I didn’t want to have to go through what I did with my ex-ex, but I was also worried that because he was a doctor, he wouldn’t want to spend his non-work time with someone who was sick.

But he told me that we all have our things. And then he was so amazing when I was in the hospital, like spending the night in the ER with me was the most natural thing in the world.

The most recent flare that I had was the first time I had, had in a long time. And it sucked. My arms and legs ached, my throat hurt, and I had a pounding headache. To boot, one arm hurt so bad that I couldn’t even use it to hold the cold compress on my head. The last time I felt like this, my ex-boyfriend was in the picture.

(Plus it was my Methotrexate day and I got my period.)

You know how people worry when someone dies that they won’t be able to remember the person’s face? Well I can still see his face, but I feel like there’s nothing left for me to hold on to. It’s not that the memories are fading. It just feels like insert any guy here, that the things I loved weren’t qualities that only he has.

I remember sitting on the bed with my boyfriend, we were at his parents’ house, about three or four months into dating. And he was surprised because he at first thought I was too young, not religious enough, and he didn’t want to date another redhead. And I had similar feelings. The last person I wanted to date was a kosher-keeping, redheaded, Jewish doctor. And yet, there we were. And I think we took that as the ultimate reason to be together; because you can fall in love with the person you never thought you would give a second glance to. But maybe we had it totally ass backwards.

I don’t think our relationship was a mistake. It was a happy thirteen months. But it sucks when you’re alone and feeling like crap on a Saturday night and all you want to think about is all the reasons the relationship should have worked, and all you can think about are all the reasons why it shouldn’t.

We moved quickly in terms of emotional intimacy, and slowly in terms of physical intimacy. I took this as a good sign, especially when he was parading me around his family and friends. Not only did I lose him, I lost them, too.

He was totally not a planner, which I think worked to the advantage of my illnesses in some ways. We just took things as they came. But given that he is a doctor, there is a level of emotional detachment that comes with his job, and ultimately, that carried over into our relationship.

I can’t say that I can explain the way the break-up occurred, or why I deserved to be treated the way I was treated in the end. He was out of town for four days, came back, said we had to talk, and ended it. And made me move all of my stuff out of his apartment that night. I didn’t think that anything could have been more hurtful than the guy before him point blank saying that he was with someone else, and yet, he managed to hit that out of the park. We spent over a year cultivating a relationship that it took about five minutes to destroy.

I hate dating. I love dating one person, but I hate being a serial dater. I’m just not good at it. Plus, there is the whole chronic illness thing. And now that I’m back on the “market,” the one thing I’m looking least forward to is having to disclose my illnesses all over again.

I wish I could just say that I have these illnesses, but that they don’t really interfere. But that’s not true. I mean, they ebb and flow, but the reality is, my short term memory sucks, sometimes I lose my words mid-sentence and can’t remember what I want to say. Sometimes my hip freezes up in compromising situations. Sometimes I’m in so much pain or feel too crappy to get off the couch. But mostly, lately, I’m just me.

I imagine that some of those close to me who read this will be surprised because they thought I was coping better with things. But the reality is, I’m sick of coping. I’m sick of having something to deal with. I’m sick of having to overanalyze everything I’ve done and everything I do because I feel like a failure.

I’m not the one who gave up on the relationship. I’m not like that. I never would have done that. I don’t give up easily. And maybe that’s part of the problem. But I hate having to count losses. I hate having to measures days, months, and years on what has been lost rather than on what has been gained.

When Love Isn’t Enough

Above is my “love note” that was printed in the latest issue of Lupus Now magazine.

Why the public declaration of love? Because in the dictionary, love comes before lupus. Coincidentally, it also comes before rheumatoid arthritis, too. (Lucky me!) Because I’m in love; every hour of the day, every day of the week.

But I guess that doesn’t matter now. What I intended to write here isn’t what I’m going to write, because what I was going to write about doesn’t exist anymore.

My relationship of over a year is over. And honestly, I’m as shocked as you are.

Devastated doesn’t begin to sum up the way I feel right now.

Relationships are hard. They take work. And you don’t just take what we had and throw it away, especially without so little of a coherent explanation. It just doesn’t make sense.

I remember our first date like it was yesterday, and our second, and our third, and our fourth. I remember how my head fit perfectly into the crook of his arm as we slept. I remember the way that he took care of me when I was in the hospital, how he stayed with me all night in the ER after working for 24 hours the night before.

But I’ll also never forget the look on his face when he said, “I need to talk to you.” And I’ll never forget the pain of having to pack up my stuff from his place, to exchange keys, and say goodbye. I’m nauseous just thinking about it.

Or the way he cried, too. But if doing this is so upsetting to you, why did you do it?

Right now there are too many memories. Too many unanswered questions. Just too much.

Does love conquer all?

I don’t know.

Does love heal?

I don’t know.

But I am certain that love helps, especially when you find the person who is the missing piece to your puzzle.

The thing is, I really thought that I had found that person. What’s more, I wasn’t scared anymore. Well, that’s not quite true. I did worry that at some point, sooner or later, this would all become too much for him, and he’d realize he signed on to a nightmare.

But now I’m the one in a nightmare that I wish I could wake up from. I saw myself marrying this man, and having children with him, and coping with the ups and downs of illness together. No matter what, we would get through it together, as long as we had each other.

I loved, and still do, love this man with all my heart. Together we made sense, or so I thought.

I’m scared, first, of living a life alone that was once so entwined with someone else’s. How to be single again? How not to go to his place or call him on the phone to share the events of my day? How to live with the specter of illness, as a never-ending cycle, without it mattering in intimate ways to another person? And I worry that my health, which in some ways was relatively stable while I was in this relationship, won’t stay that way.

I know that ultimately, I will survive this. That’s what I do. I survive and I soldier on. Writing helps me cope, so I’m sure I will be sharing more with you as things become clearer, although I’m not so sure they ever really will.

In, reality, illness took a backseat to love. So now I’m left with me and these illnesses, in a world that makes no sense at all. And for right now, that has to be enough.

When you look in the dictionary, love comes before lupus and rheumatoid arthritis. But there’s a single letter that comes before all three of those things: I. No matter what, I have to love myself.

It Just...Kind Of...Happened...

“I finally found someone

That knocks me off my feet

I finally found the one

That makes me feel complete

It started over coffee

We started out as friends

It’s funny how from simple things

The best things begin”

- “I Finally Found Someone” by Bryan Adams and Barbara Streisand

My BF and I have been dating for a year today. So I guess this makes it our “one-year-dating-anniversary.”

I think that my previous relationships didn’t work because the other person was so set in their ways that they didn’t have room in their life for me. And that’s okay. I’m better for it. Because without those experiences, I wouldn’t have been willing to throw caution to the wind and go out with someone who I wouldn’t have normally gone out with.

What does that mean? A red-headed, Jewish doctor (as if that is the worst thing to be, right?). All of the qualities I didn’t want in a man. This is funny in and of itself, but it is all the more funny because my Bubbie – that’s a Jewish grandmother – didn’t want to marry a man name Manuel who was in the grocery business.

And guess what? She married a man named Manuel, who owned a grocery store, and they’ve been married for 64 years (I definitely like those odds!)! And I’m so glad that I went out on a limb, because I would have made a huge mistake if I hadn’t.

When I first started dating, I didn’t feel like I had the right to be too choosy because I am sick. I thought I had to take what I could get because, who, after all, wants a sick girl? This line of reasoning is incredibly negative and did not serve me well at all. I made a lot of mistakes along the way. But these mistakes made me realize that I deserved so much better than what I was getting.

Insert BF here…

I can’t really believe a year has gone by so fast. But to be honest, it has been one of the best years of my life. I never expected that going for coffee on a day that I wasn’t feeling well, and got out of my pajamas at 7:00 p.m. to go on the date, would turn into something that has lasted a year (and will hopefully last a lifetime).

I feel so lucky to have found someone who truly loves me for me, who has embraced my shortcomings, has celebrated the positive things with me, and has supported and encouraged me through the negative.

The reason I titled this post “It Just…Kind Of…Happened…” is because I can’t quite believe this is happening to me. I can’t believe that this amazing man is a part of my life. We survived the disclosure of illness, we survived past the third date, we survived meeting the parents, we survived a hospitalization, we survived losing a grandparent.

The point is, we’ve survived a lot of heavy stuff in a fairly short period of time, and we are still together, and I think, loving nearly every minute that we get to spend together.

He’s my B-F (boyfriend), my S-O (significant other), my P-I-C (partner in crime), and really, more than anything, he’s my everything.

Rich, I truly hope you know how much I love you and how lucky I am to have you in my life. Thank you for making every kiss feel like it’s the first. Thank you for making love song lyrics that I used to fantasize about become my reality. And thank you for never making me feel like a “sick girl,” even when I was in the hospital. You might be a red-headed, Jewish doctor, but you’re my red-headed, Jewish doctor. And I love, love, love, love you!

Forgive me for being so schmaltzy. But healthy or sick, there are some things you just have to celebrate.

“I Love You, Don’t Touch Me”

“Oh what the hell she says

I just can’t win for losing

And she lays back down

Man there’s so many times
I don’t know what I’m doin’

Like I don't know now […]

And I don’t know what I’m supposed to do

But if she feels bad then I do too

So I let her be […]

And she says oooh

I can’t take no more

Her tears like diamonds on the floor

And her diamonds bring me down

Cuz I can’t help her now[…]”

- “Her Diamonds”, Rob Thomas

He wakes me up gently. I roll over so my face is buried in the pillow. He lifts up my shirt and gently rubs the ointment on my back. He pulls my shirt down and I turn back over. He wishes me “Happy Birthday” and kisses me.

Such tender moments in my relationship with my boyfriend make me think that there will never be misunderstandings, that such minor maintenance will prepare us for the potentially tough times that could lay ahead. But I know the fatigue – one of the peskiest and least understood symptoms – is something that baffles him as much as it baffles me.

Why, after working 30 hours straight to my four or six or eight, am I totally exhausted and he’s not?

But there are also things I don’t understand about him. I can’t imagine how it feels to be a doctor and lose a patient. And I want to be there for him, but I don’t know how.

So in some ways, we are even. It’s hard to watch someone you love suffer. But sometimes there is no choice, because there’s nothing in your power you can do to help the other person but be present.

You can empathize 98%, but there are some things that can’t be taught or learned. I can explain symptoms in ways to try and make him, or anyone else, understand, but at the end of the day, I’m the one who has lupus and rheumatoid arthritis, and only I know 100% how that feels; just as only he knows how it feels to take care of a patient, only to have them die.

Life is a funny thing, as it only prepares us so much for our own hand, so to try to begin to understand someone else’s is a feat in and of itself.

My boyfriend told me several months ago that he had read my blog. He told me that he cried, had to walk away a few times, and that there were so many times he wanted to call me in the middle of the night to talk about things I had written. He said that because he’s a doctor, he knew what lupus was, but he could never have imagined what it meant for my life. He told me that I’m one of the strongest people he knows, and stronger than anyone should ever have to be.

So mostly, there is just love. And the act of being in the same room together is enough. Because there are times when I just want to say, “I love you, Don’t touch me.” Even though that kind of feels akin to “It’s not you, it’s me,” it’s true. There are times when I’m in pain, and the slightest touch will make me wince, or I’m so exhausted that the thought of expending any kind of energy at all is unfathomable. There are times when love has to be enough because that’s all either of us can provide in that moment, because we are ill-equipped to deal with the other person’s suffering.

Never, in my darkest moments over the past few years, could I have ever imagined that I would meet someone like this, someone who sees me for me, beyond illness, and who is willing to stand by me, no matter what.

Because when you get sick, you think that you’re never going to find anyone to love you. And then you meet that guy. And you love him, and he loves you. And honestly, every time I think really hard about this, I cry. Because I’m so happy, and I can’t imagine what my life would be like without him. Because even the worst days are made just a little bit easier because he’s there.

When Your Body Calls, Who Responds?

“[…] And if you call, I will answer

and if you fall, I’ll pick you up

and if you court this disaster

I’ll point you home […]”

- “Call and Answer,” Barenaked Ladies

One of my worst fears was recently realized. I was “sick” with my boyfriend (the doctor). I got a lupus headache that totally ambushed me. It was a bad combination; my methotrexate day, time of the month, rain, and no coffee (TMI? Sorry!). I thought I had caught it in time, but before I knew it, I was laid-up on the couch, rolling around with nausea and dizziness, wishing someone would stop the incessant pounding that was pervading the right side of my head and my brain stem (or kill me).

In my past relationships, for whatever reason, I was never in the presence of the person I was seeing when I was flaring or not feeling well. And I dreaded the day when this actually happened.

But he didn’t run away. He didn’t coddle me to death, either. He was the perfect balance of caring and supportive, and hands-off. I felt terrible because he was leaving town for a week the next morning, so needless to say, the romantic night I had planned for did not go the way that I’d hoped.

But I guess that’s the way these illnesses work. If they were predictable, they wouldn’t be so damn frustrating and annoying. If they weren’t so pervasive, I would never have to cancel plans, plan like crazy, or totally kill a romantic evening.

I had tried not to open myself up to the possibility of him ever seeing me this way, but that’s not quite realistic, is it (especially when we are seeing so much of each other these days)? And the fact of the matter is, when it happened, there was nothing I could do but be a sitting…er, laying…duck. I didn’t have a choice in the matter. I was down and out.

I apologized a million times for the way the night had gone. But he was just glad that I eventually felt better. Better enough, in fact, to finish the three-quarters worth of uneaten dinner that he saran-wrapped and kept waiting for me at the table.

A few days later, on the phone, I could feel him going into “doctor mode”, asking me how often I get headaches like that. But he can’t help it, and I’m better for it. It may make me take some of my symptoms more seriously, and view them as less fluke-y than I have done previously.

And I do feel like there is a lesson to me in all this. And it’s a lesson I feel I should have learned already. When my body calls, I need to respond. Truth be told, I had rib pain a few days before, I had been feeling a bit run down, but I kept plugging away. I am a bit frustrated with myself because I feel I keep saying that I’m totally blindsided by symptoms when the reality is that there are signs there, signs that I opt not to notice, for whatever reason, until after the fact.

But just as it was hard to get diagnosed until I was dealing with a whole constellation of symptoms, it’s hard to be proactive when I’m not sure exactly what only one symptom means. One symptom does not a flare make. At least I don’t think it does.

And with the right person, anything is possible. Worst fears are no longer worst fears. And bumps in the road are just that. They’re no longer insurmountable if we can get through them together.

So for now, we’ve survived round one. We made it through the first incident of me needing to be scraped off the couch. It wasn’t fun, glamorous, or sexy, but in some ways, it felt totally natural, like we’ve been dealing with this stuff as a couple forever. It made me realize, for the first time, that I can really get through this, especially if I have someone by my side who is willing to stay the course with me.

And realistically, this kind of care and concern will be reciprocated. While he probably won’t feel good far less often than I will, I’ll be there for him, even if it is just to tuck him into bed.

The truth is, it’s definitely nice to have someone around in moments when I’m not feeling my best. But ultimately, first and foremost, when my body makes the call, I need to be the first to respond.