AS LONG AS WE'RE SHARING THE REAL SHIT: THE TRUTH ABOUT MY LUPUS DIAGNOSIS (THRILLING CONCLUSION)

Thank you all for the support & for reading. This was hard to write but I couldn't think of a more supportive forum in which to do it. I promise my next list will be way more entertaining.
  1. Last time on...:
    Bone marrow taps 1 and 2 both suck. My dad's coming tomorrow, my mom's not, mostly due to my inability to let my parents feel sorry for me. Now - part 3!
  2. My boss and colleagues send over flowers and some trashy magazines.
    Which is kind of odd, because we are the ultimate people who should not be encouraging the paparazzi, but if the veal is already in the kitchen is it SO bad to order it? (I hate the paparazzi and the culture of lookie-loos they create but I can't say I've never read US Weekly, sorry everyone!)
  3. Not to be outdone, first boss calls the room phone. He's in New York and someone he's with wants to talk to me. It's Katie Holmes.
    This is pre-Tom Katie. She was my favorite of all of first boss's clients - we got pretty close, and apparently when first boss told her what happened (at the red carpet for the First Daughter premiere) she freaked out and made him call me. This is not included as a humblebrag, more just to highlight the weirdness of who knew how bad the situation was and who didn't. (And that Katie is a truly kind person and I'm rooting for her.)
  4. In the evening, various people visit. Darren brings me a basket of apples because he hates when I eat them in the office (he doesn't like the crunching), which cracks me up.
    Everyone asks if the doctors know what's wrong with me. I say no, which seems essentially true.
  5. The next morning, I'm proven right on that front. They don't think what I have is cancer, but it's something that presents a heck of a lot like it.
    This is the point where House premiering a few months earlier (it debuted two months after this story and popularized the idea that a disease you can't figure out is probably lupus, although of course on House it's never lupus. I do a really good bit about how I would have been the easiest patient those doctors ever had) would have been REALLY helpful.
  6. They do a billion more tests, none of them as painful or invasive as the bone marrow tap, thank goodness.
    I still feel like shit, but at this point my dad has arrived and there are lots of visitors so I'm trying to hold it together. I can't remember if I was worried about what my actual diagnosis was - I think I still had that completely headstrong idea that this was all a mistake/waste of time and it was going to be so embarrassing when it turned out it was just anemia this whole time.
  7. More people visit that night. Everyone is really nice and chatty and all I want is for them to leave so I can watch Survivor.
    They still don't know what's wrong with me except "some type of blood disease," and have me on a hardcore steroid that is making me uber-grouchy. All I can think about is how much work I am missing and am I going to get fired?
  8. The rest of the hospital stay is uneventful, a blur of delicious hospital food (it was way better than expected, but also I was on a lot of drugs so YMMV), concerned visitors, and various doctors doing various tests.
    When they finally release me, they still don't know exactly what's wrong, but set me up with an appointment to see a blood disease specialist.
  9. My dad drives me home and I ask if we can stop to pick up some frames.
    I have some posters that need hanging and this seems like a good time to check that off the to-do list.
  10. In the art supply store garage, after buying the frames, my dad bumps (bumps may be an understatement) a parked car with his rental.
    The parked car is fine. The rental is less fine. I don't think my dad has had a car accident in his life and realize that he's rattled by what's happening, which is surprising and heart-melting. I spent my entire teens/20s/okay probably I still do trying hard, so hard, not to let my parents know when I'm struggling, and it feels so raw to be this exposed.
  11. As a result, I behave like a brat toward him back at my place, snapping when he asks where I want the pictures hung.
    This was also partially because the steroids made me crabby, but I can't blame it all on the drugs.
  12. The next day (this is probably a week after I went into the hospital), I'm on the way to the blood doctor, when I miss a call from first boss's doctor.
    After the blood doctor appt, where they take more blood yet give no answers, I call him back.
  13. He's positive he's diagnosed me: the hospital was only looking at my blood, not my entire body, and so they missed what was right in front of them: lupus.
    Dr. House and co would never have made such a rookie mistake, but, again, that show was still a few months from premiering.
  14. He explains kind of generally what that means - your immune system is unable to distinguish between healthy tissue and foreign invaders and so goes overboard fighting both.
    I am shocked - shocked, I tell you - to discover that Type A me has a Type A disease. I mean, it's kind of poetic justice that my body overthinks things the same way my brain does.
  15. We make an appointment for me to come in and discuss treatment, etc, and he asks me how I'm feeling about the news.
    "Well, it sounds way better than having cancer, right?" He laughs. I laugh. I hang up and cry - out of exhaustion and relief and a million other feelings that are flooding out of my overworked body at once.
  16. September will be the ten year anniversary of this story, and I'm glad to say that I am doing okay.
    To the outside world I say I'm doing awesome. The real truth is I'm exhausted most of the time, I get joint pain (exercise helps), and I have a neverending stream of doctor's appointments which cut into my precious little free time in a frustrating way.
  17. That said, I believe we all have a choice when we wake up each morning.
    We can decide to bemoan our circumstances or to greet the day with a grin and the determination to crush any shitty feelings with spirit, hard work, and a fucking sense of humor.
  18. No matter how tired I am, I recognize that everyone - EVERYONE - is going through something hard.
    Maybe it's a physical ailment, maybe a mental one. Maybe someone you love is suffering and you're desperately trying to help. Maybe you're lonely or you've gotten your heart broken or you've fought with a dear friend or you're at a crossroads and not sure which way to turn.
  19. I don't really talk about my lupus because I don't want it to define me and I don't want to seem like I think I have it worse than anyone else.
    I don't. I have an amazing life - wonderful family, friends, the best partner ever, a job I would pay my employers to have (um, don't tell them that, I still need to pay my rent), and I am so, so grateful. If dealing with this disease is the worst thing that I have on my plate, I'm still an insanely fortunate person.
  20. That said, it's been really meaningful to me to share this story in this detail with all of you. I realized that in not telling it to anyone ever I was hiding a piece of who I am, and that this forum filled with so much kindness is the right place to finally lay it all down.
    It's still not something I'm interested in being a poster child for, but I'm glad to have had the chance to explain. Thank you for listening. You are all 💯.