Despite all evidence to the contrary, this is not a pregnancy blog.
It’s just that, for a variety of reasons, I actually don’t get to talk about the baby and pregnancy very much in real life and so this blog becomes my space for that. There are only a few people in my life I have been able to just blab and blab to about all my thoughts and fears about pregnancy, or just things that I find downright interesting and am surprised I never learned in sex ed or bio class!
But as much as I will inevitably talk about pregnancy over the next six months, followed by baby updates, I think it’s also time for me to talk more in detail about my past and how exactly I got here.
It’s interesting that despite having kept this blog pretty religiously over the past twelve years of my life, huge chunks of my life are glaringly absent from this space. Things that I never wrote about at all or wrote about in very cryptic ways to avoid people knowing what I was really talking about or going through. A lot of this was due to not really knowing who was reading, being afraid of how it could someday affect my career path, and of feeling judged but not knowing who was judging me.
I’m not completely over any of those fears, and the idea of my parents finding this place still freaks the bejeezus out of me, but now that I am basically “out” at work, I do think it’s time to share more about my experience with lupus and how it has affected every facet of my life.
In a way I feel like I owe it to the 1.5 million fellow Americans who suffer along with me, mostly in silence. There is so little attention given to this disease that affects so many, this largely invisible disease that has only recently started to have any big name advocates to bring the spotlight on those of us who have to live with pain and illness every day. My story probably won’t change much in the grand scheme of things, but I know that every time I come across the blog of someone else writing about their lupus and how it affects them, it is comforting to realize that there are others out there who get it. Others out there who want more research, more answers, and hopefully someday a cure, every bit as badly as I do. Sometimes it’s enough just to know I’m not alone.
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I’m not really sure where the story truly begins, but I guess the best place to start would be my senior year of college, the first time when looking back, I had clear and unmistakable signs of a lupus flare.
My boyfriend at the time, The Marine, had just returned from Iraq and our relationship was falling apart like a band-aid being peeled ever so slowly off raw skin. It’s a post for another day (one I really do plan on writing) but the gist of it is that he wanted to return to the “normal” life of a college sophomore (where he had left off before the war) and I was about to graduate and truly believed he was The One. I think on some level he did really love me and on another level he might have felt guilty that I had waited for him and so he couldn’t bring himself to break-up with me right away when he returned and knew that he didn’t want the responsibility of a long-term girlfriend who had her sights set on marriage.
Anyway, it was a tumultuous year. I was jealous, insufferable and clingy. He was emotionally distant. And we were trying to maintain a long-distance relationship since I was still in LA and he was attending UC Santa Cruz.
On top of relationship stress I was worried about finding a job after graduation. I found myself about to graduate from college and still had very little idea of what I wanted to be when I grew up. Except I was about to be a grown up. Oops.
Obviously my problems were all what you would call “first world problems” but they were my problems nonetheless and they did stress me out. And as I now know, stress can contribute greatly to lupus flares.
It started small. The joint in my right elbow would lock up. I attributed it to too many computer games. I even saw a TCM practitioner about it, as well as a PCP at Ka.iser and was told it was a dislocated thumb (TCM) and tendonitis (PCP). This was during Thanksgiving 2003.
The pain in my elbow would come and go, worse somedays, better others. The ex finally put me out of my misery during Spring Break of my senior year. I was devastated but also determined not to show it. I partied, I worked long hours at my internship, and I finished my last quarter of college.
Edited to add: I forgot to mention the small but, I think, important detail that after the breakup I started tanning. I had always been pale but living in LA the pressure to have at least some color on my pasty body finally got to me when I was back in “attract a man” mode. Given that I was already having signs of mild arthritis, tanning was about the dumbest thing I could have done (UV rays are HORRIBLE for lupus) but I’ll cut myself a break since I had no idea what I was risking beyond skin cancer (which admittedly was already pretty dumb of me. But I was 21 and heartbroken, so again, cutting myself a break).
I noticed after nights of clubbing in heels that I would have a hard time walking the next day. I would get up out of my chair and my ankle or knee would lock in pain out of nowhere. Sometimes it happened so suddenly that I would nearly collapse onto the floor. I didn’t think much of it, except that maybe I should quit wearing heels. It honestly never occurred to me that something could be seriously wrong with me.
I graduated college in June 2004 and met my future husband on the day I graduated. I also started working full-time at the fundraising firm for which I did my internship. The hours were long, the environment was stressful, the pay was for shit. They didn’t offer health insurance when I first started and I didn’t realize that I was still covered by my parent’s insurance (it’s changed with Obamacare but at the time you were covered until the end of the calendar year of the year you graduated from college) – but as it turns out I was very lucky that I thought I didn’t have insurance because I never saw a doctor. I say I was lucky because my company started offering health insurance as of January 2005 but had I been seen by a doctor in the interim my new insurance probably would not have paid for my treatments since they could have classified it as a pre-existing condition.
As 2004 passed, my symptoms began to ramp up. When I woke up in the morning, I never knew what joint would be aching or swelling. I remember being home for the holidays (I think it was Thanksgiving again) and my knees swelled up out of nowhere. My family wanted me to see a doctor but I was convinced I didn’t have health insurance and so I didn’t. I honestly wasn’t all that concerned, I still didn’t believe there was anything seriously wrong.
My parents bought me a new Sleep Number mattress for Christmas that year (I thought maybe it was my crappy futon causing all my morning aches and pains) and I didn’t have a frame for it so I put it directly on the ground and I remember somedays it was such a struggle to get up out of bed because various joints hurt so badly I couldn’t push myself up. I was like an arthritic grandma at the age of 22.
And then finally, on a Thursday night in early January 2005, a mere handful of days after my new health insurance kicked in, I woke up in the middle of the night with searing pain shooting across my upper back and both shoulders. That was the first time I had ever had pain there and it was completely unbearable. I couldn’t move without pain, I had to use the bathroom but I just literally could not move. I started crying and Paul woke up. I told him I couldn’t move, that my whole body felt like it was on fire and I finally admitted to myself that something was seriously wrong with me.
The next morning, Friday, I called in sick to work and Paul and I immediately set out looking for a doctor for me to see. I called my cousin who was a family medicine resident at UCLA and told him what had happened. Since I had a PPO he advised that I go directly to see a rheumatologist. Paul looked up rheumatologists that took my insurance and decided that I should call someone named Dr. Bruce Miller. Why? Because he had a strong sounding name and an office in Beverly Hills. Yes, that is seriously how Paul picked the best doctor I have ever met.
So I called Dr. Miller’s office and his assistant Delia answered the call. She told me that unfortunately he was completely booked but I guess she heard the desperation in my voice and she said she would take my information down and see if the doctor would call me on his lunch break. I firmly believe she was one of the angels God sent down to help me when I needed it the most.
Dr. Miller? He was undoubtedly an angel in my life. In fact, if our little one is indeed a boy, his middle name will be Bruce.
He did in fact call me back during his lunch break that day. He spoke with me for awhile, listened to my story while he could have been having a nice sandwich. And then he said that he was completely booked for the day but he did think I needed to be seen right away. He asked if I could come at the end of the day, his nurse could draw my blood and take a urine sample before she left and he would see me after his last appointment. Keep in mind this was all taking place on a Friday, when most doctors want nothing more than to get home and enjoy their weekend.
Months later as I sat in his waiting room (he was almost always running behind but I never minded because I knew it was because he never rushed an appointment and wanted to give each patient personalized and thorough care) another patient began to chat with me. I always got a lot of stares in the waiting room because I was usually the youngest one there by a good 40-50 years. People wondered what I was doing there. The woman asked how I had found Dr. Miller (clearly prying but I didn’t mind, she was very nice) and I told her that I had just called out of the blue one day. She was shocked. She told me that there was a four-month waiting list for new patients, that she had been trying to get a friend in to see him for awhile without success. She told me that he was considered one of the best in LA and that she knew of quite a few other doctors who came to him for their own care.
It was my own Footprints in the Sand moment, realizing that the only thing that made any sense was that God had led me step by step to this very doctor, the one who would diagnose my lupus within two weeks of my first visit with him. A disease that often takes years to diagnose. I guess I was “lucky” in the sense that a) I presented quite clearly with lupus nephritis (arthritis, protein/blood in urine, positive dsDNA, low C3 and C4, anemia, etc.) and b) I had an incredibly thorough doctor who knew exactly what to look for and which tests to run.
I’ll never forget the day he called me to come into his office after he’d gotten all my tests back. I couldn’t even drive myself at that point and Paul was in class over an hour away so I had to ask a friend to take me the office. I was terrified, I couldn’t deny it anymore, something was really wrong with me but I had no idea what he was going to say it was. I was sitting on the exam table and he told me he was pretty sure I had lupus.
I remember him telling me that I wasn’t going to die, that the treatments had improved a lot and that death was quite rare nowadays. I know he thought he was being comforting but the fact was I had no clue what lupus was and it never even crossed my mind that I could die from it until he said I wasn’t going to die from it. He told me I needed to see a nephrologist because it was attacking my kidneys, and I realized that’s why his nurse kept asking me if I had a UTI everytime I gave urine – because there was blood in my samples. He was incredibly compassionate and gentle, and other than the death comment quite comforting about the fact that I was going to be okay.
Still, I left the appointment in shock.
I called Paul and told him what the doctor had said. He had class the next day but an hour later he was knocking on my door. He had gotten in the car immediately and stayed on the phone with me without telling me he was coming because he knew I would tell him not to. I already knew I wanted to marry him before that, but after that I was a little more sure.
I don’t remember at what point the shock broke and the tears started, but it happened sometime that night. I don’t remember telling my parents. I don’t really remember much else about that night besides what I just wrote.
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And….now it’s late so I think I’m going to have to finish this another time. Up next…meeting the nephrologist and my kidney biopsy.
