10 years

I remember it like it was yesterday.

Sitting in the doctor’s office, waiting for him to come in and give me the news.  Wanting a diagnosis, but scared of what it would be.  Wondering what my life would be like in the years to come, hoping that I could still achieve my dreams—and at 22, I had a lot of them.  Looking at all the models and diagrams of healthy and not-so-healthy body parts, curious as to what mine looked like.

The door opened, and in he walked.  He sat in the chair, took a quick glance at the folder he was carrying, and then set it aside.  Without inquiries as to how I was feeling or any other preamble, he issued a statement:

“You absolutely, unquestionably, without a doubt, have Lupus.”

I sat there and blinked for a moment, letting the words sink in.

Lupus.  Finally, a name to go along with the symptoms I had been experiencing for the previous 3 months.  Hair loss, such that every time I ran my fingers through it, I ended up with a small handful of hair tangled in my fingers.  Fatigue, to the point where if I had 30 minutes of spare time, I was napping—even though I was already sleeping 10 hours a night.  And above all, PAIN. In my fingers, wrists, and elbows. In my hips, knees, and feet–so much so I was taking 2 Tylenol and 3 Advil every 5 hours just to walk.

The doctor was already describing the treatment protocol. Prednisone (a corticosteroid), to reduce the inflammation.  Plaquenil, to suppress the immune system in overdrive that was causing some of the symptoms. Celebrex, to help with the pain.  Daily doses, it was hoped, would ease the symptoms over a 2 month period.

“And then?” I asked.  “After 2 months, will I be able to go off them and get back to my normal life?” (oh, the naïveté of such a question makes me laugh now)

I could see him holding back a chuckle as he said, “This is your normal life, now.  Lupus is a chronic illness; it won’t go away.  If 2 months on these doses doesn’t result in an improvement, then we’ll have to increase them, and maybe add another medication or two. They should ease your symptoms, but I don’t know for sure.  Only time will tell.”

“What about my job? I’m a Marine, learning Arabic. I have 6 months until I graduate. Will I be able to stay in, or will this get me kicked out?” I’ve finally found a place where I feel like I fit in.  What will I do if I have to leave…

“I don’t know.  But stress is bad for you, as are long hours. You might want to see if they can make accommodations for you.”  Now I was holding in the chuckles; obviously this guy had never served in the military.

“Will I still be able to have kids?”  (Even then, I knew that I wanted to be a mother some day.  Not soon, but some day.)

“I don’t see why not.  It’ll depend on certain factors, and the timing will have to be right, but women with Lupus get pregnant and have children all the time”.  (If only he could see me now, needing a gestational surrogate to become a mother, because of Lupus.  If only he knew that I spent 2 years trying to get stable, then 2 weeks trying to conceive, and then 2 more years trying to recover from the “safe for pregnancy meds” that messed up my system in the 2 weeks I was on them.  If only he saw the Rituxan infusions that didn’t work, the last ditch effort to put me in remission, that I might be able to try again.)

And with that, my time was up.  He handed me the prescriptions, some informational pamphlets, and walked me to the front desk.

10 years have passed since that day.  I generally don’t dwell on it, but since May 10 is both World Lupus Day and my sick-a-versary, I felt that I should recognize it somehow.  Writing it here seemed fitting, as it was the start of my surrogacy journey–even though I didn’t know it at the time.

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3 Comments

  1. Wow. You’ve come a long way. I’m sorry the doctor wasn’t very nice about it though…

    Reply
    • Fortunately, I only had to deal with him for 6 months. Even better, when I was in-patient at the hospital for a week, his manner was much kinder. I’ve been blessed that all the rheumatologists after him (especially those in the Navy and at Stanford) have been awesome.

      Reply

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