Introduction & Early Stages

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February 2001

Tuesday, February 06, 2001

It's 9:32 a.m. and I'm looking outside my window. All I see is snow--and a lot of it. Classes were cancelled today because everyone awoke to close to a foot of snow. To say I was happy would be an understatement. So now for the first time in the two weeks that I've been back, I can have a couple minutes to myself and write down some of what's been going on.

It was a whirlwind trip. Bad weather and traffic didn't let me go up the night before classes began. So in the car I drove at 4:15 in the morning back to school to make it in time for my first 8 a.m. class. I had to lie to my mom and tell her the class was at 8:30, because otherwise she'd make me leave earlier (though I knew that wasn't necessary). It wasn't the smartest thing to do because it wiped me out for the next three days. It was as if I couldn't break the tired-spell I had cast on myself. I blamed it on missing home, but I know that my body just didn't appreciate waking up at 3 in the morning, and driving for 3 plus hours. Something I'll be sure to avoid in the future.

Settling in was relatively easy. Going to all new classes was okay... a good chance to start anew. Getting to classes across campus wasn't the easiest thing, and of course I was late--but by no fault of my own. It was just another one of those "they'll never understand" examples. But the workload is actually a lot this time around.

Speaking of which--I got into a 'discussion' with my parents about school work versus CreakyJoints work. They aren't exactly in favor of me doing the two things at once. I promised them I would focus more on school and that's what I've been trying to do. Another 'not-entirely-true' statement. I figure I just have to find my "groove," and things will be okay. I will be able to do both. So long as I wake up in pain, or so long as it hurts to walk up stairs is as long as I'll work on this. Too many people hurt. This disease affects too many people for me to just 'put it on hold'. Not to mention myself. They'll have to understand that. If I'm not feeling well, the last thing I am motivated to work on is school. If it means staying up an hour later and waking up an hour earlier, then that's what I'll do.

After all--none of us is stronger than all of us.

Friday, February 12, 2001

In this world there are two types of people: those that know how difficult life can be when you have arthritis, and those that don’t. Unfortunately, it feels like with the exception of my family and my close friends, the rest of my universe falls into the latter category. But is it their fault? Not really. I mean, can you blame someone for just not knowing any better? Hardly.

Then I think to myself “Seth, you’re a great communicator. Why doesn’t everybody around you know about your condition?” And the answer is simple: I’m embarrassed. Yes, I’m embarrassed. I’m embarrassed that they won’t understand, and I’m embarrassed and afraid that they’ll think differently of me.

There, I said it. Was that so hard? I mean, can’t a guy who spends 8 hours a day telling the world about his condition and working to build a web site that he help start just crawl into his shell and not tell those closest to him? None of my classmates know. None of my teachers know, and it has dawned on me the fact that it is completely against anything I have ever stood for. Or is it? Times like this I’m nothing more than confused, upset and a little worried that I’m going about this in my own, weird way.

I wish that I didn’t have to deal with people. That I could just wake up and go about my life without having the hassle of explaining to people why I’m limping. Or why I don’t go to the gym like everyone else. That would help a lot.

Monday, February 12, 2001

Today was a big day for my family. My sister gave birth to a new generation – by having a beautiful baby girl. Samantha Lily Sloves. My parents have been on edge for weeks and weeks (really for 9 months, but not seriously until about two months ago), and today was the climax and the day that everybody was praying would be okay. And luckily, it was. The baby girl weighed in at 6 pounds, 15 oz, and is as healthy as can be.

Since I couldn’t be there this afternoon, I watched the video that my dad had filmed. My mom (who was in the delivery room) ran into the waiting room and was in tears, overwhelmed, telling my dad and the in-laws that it was a healthy girl. Then, with a stroke of sheer cinematography brilliance, my dad filmed my sister’s husband come out and tell his parents that everything was okay. It was a moment filled with emotions beyond belief. Everybody was crying, and anybody watching was moved to tears (myself included).

This is the first grand-child of the immediate family. It makes me realize how precious life really is. How important it is to be happy and healthy. Not to be rich. Not to be pretty. Not to be anything else but happy and healthy.

Tonight I learned how precious life is, and how lucky I am to be here and share this happiness. For one day my pain has gone away, and my heart and soul are thankful for being a part of this miracle.

Thursday, February 22, 2001

In this world, if you have arthritis, nobody understands. It’s just as simple as that. No questions asked. I’m not being a pessimist or deliberately trying to be mean when I say that. I am just stating the not-so-obvious fact that I have a disease that makes walking hurt. A disease that makes climbing stairs difficult, and that makes opening up my water bottle a challenge. And nobody gives a ‘good Goddamn’ about it. But you know what? I’m over it. I just move on with my life. After I vent of course.

Last night, for instance, I went to see Penn and Teller in Boston. Love those guys. They’re two hysterical magicians on crack, basically. Since lately I’ve come to realize how expensive college, a car, and living in the USA really is, I’ve been cheap. So I sport the cheap seats…balcony, 3rd row from the top. We’re talking the really cheap seats. But it’s okay, I just wanted to go, and as long as I could hear them, I’d be fine. It wasn’t until I was climbing the stairs mid-way (about the mezzanine, or less-expensive-but-still-overpriced-section) did I realize how bad an idea it was to be so cheap. I had such a difficult time going up what seemed like an endless flight of stairs. I knew it was bad when an 80 year-old passed me to my left. My first reaction was “that bitch”. My second reaction was “what the hell is she doing at a Penn and Teller show?” As I labored up and up some more, I started dreaming up ways to beat her. Perhaps if I pulled her down or threw my coat on her to trip her she’d fall and I’d prevail. But alas, I just looked down and kept on trucking.

At the top of the stairs I was not out of breath. I did, however, have a nosebleed and felt a little light-headed. But most importantly, I was so sore and achy that I dreaded taking even another step. And there went the old lady, to her seat, as though nothing had happened. I looked down the flight of stairs, and then into the doorway to the theater when I realized how difficult that really was for me. Five minutes later I made my way to my seat where of course I discovered the old lady sitting next to me. She looked up as if to say “you finally made it?” which didn’t exactly help.

That’s when I realized (this week at least) that nobody understands. Nobody. What’s a college boy with Spondyloarthropathy to do?

Saturday, February 24, 2001

Boy oh boy did I have a real scare that taught me a really valuable lesson. I’m an idiot times ten, but I think today marks the start of my smarter life. The first time I “chose” not to take a pill that I probably should have…Prilosec. And as a result I developed what they thought was a peptic ulcer. This also came about because I didn’t drink enough water with my other medicine. Stupidity squared. Yesterday was the defining reason why I should start to take my other pill – this one isn’t arthritis related, but I think it’s the other 10 pills I take for arthritis that caused me not to want to take the 11th. Stupidity cubed.

I have a minor heart condition called SVT. In layman’s terms, it’s a rapid heart beat (average pulse is like 70 beats per minute, from time to time I get 170 beats per minute) that lasts for approx. 30 seconds at a time, on a fairly regular basis. I’m supposed to take this stupid pill to make it stop, and when I take it, sure enough it goes away. But without fail I always say to myself “I don’t want to take another freakin’ pill”, and that’s the one that gets tossed. I deal with the symptoms and life goes on. Until yesterday.

I started to feel a weird sensation in my chest around 1:30 or so. I brushed it off as I had stuff to do (homework and CreakyJoints stuff), so I went about my business in the afternoon. As I was on the phone with Shayne (let’s face it, what’s homework without talking to the girlfriend?) I started to feel shortness of breath. But something I could live with. A couple minutes later, at her urging and her concern, I went to the health services (only after checking my mail and saying hi to some more friends). When I walked in, the person on duty took one look at me and started freaking out. Saying I felt pressure in my chest and had shortness of breath (which I did, as luck would have it) was the WRONG thing to mention to a school health staff. Virtually seconds later (and this bugged me out) NINE guys were there. Three police officers, two firefighters, three EMT’s and an EMT supervisor! They brought in all the good stuff, and I’m pretty sure I even saw the paddles. At this point I’m buggin’ because I figured the best thing would be to go to the hospital, but I could have been there already had it not been for the fanfare. But caution is always a good thing.

Next thing I know, I turn around and I’m on the goddamned stretcher getting into the ambulance. All I kept thinking was “how much is this going to cost?” but also in the back of my mind I didn’t know what was going on and yes…macho man Seth Ginsberg started getting a little nervous. We flew to the hospital where the ER was apparently waiting for us as we by-passed some pretty bloody people (apparently cardiac gets priority, I later learned). In went the IV, up the nose went the oxygen, and off came the clothes and on went the matching gown. I kept saying to myself “I’m F***ed” and “my mom is going to be the one in cardiac arrest, not me” over and over again. They asked how severe the pain was, and I kept telling them it wasn’t terrible but it was uncomfortable and irritating enough to get me to the health services instead of watching Oprah. They said that my medical background is sketchy, and that one should never screw around with the heart. I later agreed. They began running tests and drawing blood and hooking me up to every machine made. The panic and fury lasted about 30 minutes, and we all concluded that it was an extended SVT and though the EKG proved to be okay, there was some kind of irregular heartbeat. Perhaps the line of the day was “we’ll see what we can do so that we don’t need to keep you overnight”. That’s when I put the breaks on what was going on and tried to take control.

The end of the story is four hours later I was released, and warned that if I don’t take my heart medicine I would face another trip to the ER and perhaps something worse. They were all right. I was an idiot 19-year-old and I learned my lesson…the scary way. If I could describe the nightmares I had last night I think anyone would agree with me that I was stupid, learned a lesson, and am so incredibly thankful that I’m okay. For now.