Tuesday, April 12, 2011

Destination: Diagnosis

"Pray for lupus." - Dr. Repice

After it was established that I would jump through whatever hoops he told me to in order to get well, my first visit with Dr. Repice got much less tense, but no less intense. Not only did he ask me questions NOBODY had asked me before, he listened, really listened to what I had to say. It was amazing. I was in the office of a well respected rheumatologist with a flourishing fifteen year practice - AFTER hours -and never once felt rushed or like an inconvenience. Surely this was a dream... OR,  I was about to get some really shitty news, so God threw me a bone and gave me the best possible messenger. I wasn't dreaming.

About an hour into the exam and Q&A, the visit was winding down. I could feel that he was going to tell me something and it wasn't going to be good. The signs were there and they weren't subtle. "Are you stiff in the mornings?" Yes. (serious look as he makes a note) "Do you get headaches?" Yes. (heavy sigh as he makes a note) It went on and on and the "yes" answers outnumbered the "no" answers by a landslide. He finally put his pen down, took a deep breath and started walking around the room as if maybe movement would make the words come out gentler. He turned to me and said "we'll need to do lab work, but based on what you've told me and what I see, it's one of three things." Time seemed to stop somewhere between that statement and the next. My heart began pounding and I felt a little light headed. Here was the moment of truth. I remember half expecting one of those three things to be lyme disease. Oh, but it wasn't on THIS list. "Rheumatoid arthritis, multiple sclerosis or lupus. Pray for lupus." Whoa. 

How do I explain how that feels? To hear that no matter what is wrong with you, it's been confirmed that it will be awful. Normal people would like to have some kind of emotional support with them when hearing such news. I was glad I was alone. I needed to process this, come to terms with it, before I could burden anyone else with my nightmare and cause subsequent worry. If I had to describe how I felt at that moment in one word, it would probably be damaged. Yeah, that pretty much covers it.

Explaining that rheumatoid arthritis was degenerative to the joints and multiple sclerosis was very hard to manage, the doctor made a very good case for praying for lupus. So I did... and the prayer was answered. Funny how of all the things I prayed for in my 23 years as a Roman Catholic, THIS is the one that gets answered. Not the pony, not the treehouse, not the passing grade on my science regents exam. I get granted lupus.  Oh how "the luck of the Irish" is deeply rooted in sarcasm.

I'm so old now, that when this was happening the internet did not exist in my world. It was the sort of thing where ONE computer in huge NYC agency had it and AOL hadn't yet been launched. If you can imagine, I had to got to an actual library to get information. I dismissed the notion that I had anything else but lupus, because I didn't want either of the other two. There weren't many books on the subject and the ones I found scared the hell out of me. Informing anyone who read them that life as they knew it was over. How encouraging. I read an interesting chapter on the signs of lupus and learned about something called a butterfly rash. Being of all Irish decent, my skin is either white or red, no in between. So uneven skin tone was nothing I ever really took notice of.

That night, after washing the make up off my face, I looked closely in the mirror to see if I saw anything remotely resembling a butterfly shape across my nose and cheeks. What do you know... I had a little lupus on my face. There it was, the notorious brand mark, plain as (and spanning over) the nose on my face.  That my friends is the exact moment I knew, with absolute certainty I had lupus. Not lyme, not fybromyalgia, a nasty drug habit or clinical insanity. Dear Dr. Numbnuts, you're an asshole.

Obviously lab work, along with meeting most of the lupus criteria, confirmed a diagnosis of SLE and antiphospholipid antibody syndrome-a blood clotting disorder. I was told this in person at my second visit with Dr. Repice,  along with a string of things I could no longer do. No birth control pills, no smoking, no stress, no sun, no junk food. I think they have more fun in a nunnery. I found myself asking "can I drink?" Which is absolutely hysterical, because I really didn't drink alcohol at all. His answer: "well, don't lock yourself in a closet with a bottle of Jack, but yeah, you can have a drink...(stern fatherly look) occasionally.

The toughest thing to hear that day and eventually relay to my family, was that I would likely not be able to have children. Getting pregnant wouldn't be the problem, staying pregnant would. The antiphospholipid antibody syndrome would probably make it impossible. I was now not only damaged, I was crushed. But don't be sad, I did have a beautiful baby girl almost 8 years ago. Of course it almost killed me, but then, isn't that the effect all children have on their parents at some point?

Dr. Repice left me that day with the notion that because it was caught early and I was getting proper treatment, I could live a long and happy life. Long maybe, but happy? I was not so sure. I left his office with a prescription for Plaquenil and one for Tolectin and immensely thankful that this chapter was coming to a close...and I lived to tell about it. I was now prepared to tell my parents with confidence that the news wasn't as bad as it could have been and would just regurgitate "a long and happy life". Though despite my best efforts I could not hold back the tears when I spoke of not having children and I regretted even mentioning it.

For the next couple of years I took my meds, had an occasional flare-nothing too serious, but something entirely different was happening to me. I was changing. An experience like this changes a person. I suppose I never really came to terms with what had transpired and ultimately,  I did NOT accept this. I had lupus, but lupus did not have me. I was going to fight tooth and nail to be normal and live the way I saw fit, not the way IT dictated.  My opponent now had a name, a face and somewhere, like all beasts do, it had a weak spot and I was going to kick it in the balls.

You can call this denial, because it was... in the beginning. But it worked for a long while and taught me the power of positive thinking. I learned that "whether you think you can or can't, you're right" (thanks Henry Ford). No longer was I the push over, the pleaser, the textbook middle child. I couldn't afford to be. This was a fight for my life, MY life...and what a bout it's been!


  1. More More More!!! :) Wonderfully written!

  2. So well written! I'm glad someone can put words to what those of us diagnosed with Lupus are living!

  3. Thank you Janelle, it's nice for me to hear that there are people out there that can relate to ME! :)

  4. I can't wait to read more !! When is the book due out? hehehe....I have so many questions for you!!! Have a great day !!! :-)

  5. Thanks Jen, please feel free to ask me anything and I will try to answer in the next few posts. :) Thanks so much for reading!