living with lupus, day by day, moment by moment

It wasn’t until I couldn’t hide it anymore that I started to share news of my pregnancy with family and friends.  I was about 20-22 weeks in, already into my third trimester.  If I could have given birth without telling anyone, that is the way I would have preferred it.

It was not that I was ashamed of the pregnancy.  My husband and I were newlyweds and this was welcomed news.

I am also not an introverted or a shy person, in fact, at the time, I was a social person who enjoyed celebrating life events with loved ones.

I was not particularly worried about the news affecting my career.

So then why wait so long?

It was the anxiety and fear that accompanied my high-risk lupus pregnancy.

I was diagnosed in May of 2010.  At the time, I had been married just under a year.  We have given some thought to starting a family but we were going to table it for a few more years.  But with the diagnosis of lupus came the urgency to start a family.  The general consensus amongst my doctors was that IF I was thinking of having children, I should start right away.  As a woman with lupus, you cannot get pregnant if your lupus is active so there is a small window.  And even after pregnancy, there’s a high chance of not being able to carry the child to term and/or losing the baby.  All that being said, with me being 33 at the time, the doctors reasoned that this could easily lead me to 40 and at that point, it would be near impossible for me to have a baby.  On this logic, I was referred to a high-risk gynecologist and even a fertility doctor.

So that’s how lupus pushed me into jump starting my pregnancy.

Fortunately for us, we became pregnant right away.  No problem there but then the fear started.

Of course, all new moms-to-be are overwhelmed with anxiety — but in addition to worrying about the type of baby carrier I was going to get, there were the more serious, and less pleasant worries of how the lupus was going to effect my health and that of my baby.

About 1/5 lupus pregnancies end in a miscarriage and 1/3 result in preterm deliveries.

To me, those were scary statistics that kept me in an heightened state of agitation.  Hence, instead of announcing the news at about 12 weeks, when it is traditionally done since that is when the risk of miscarriage reduces dramatically, I waited until a few weeks after my amniocentesis.  Emotionally, the whole pregnancy took a real toll on me as i was constantly at guards about the life growing inside me.  I even tried to distance myself from the fetus just in case something goes wrong and I lose the baby.  This made it really hard for me to envision a “happy post-birth life with an adorable baby”, which is what many pregnant moms seem to daydream about.

Physically, I was fighting another battle, as I was rather sick during the entire time of my pregnancy.  I suffered from extreme fatigue, muscle and joint pain, nausea, dizziness, headaches, loss of appetite and heartburn.  In hindsight, while many of my symptoms mimicked those of a pregnant woman, the severity in which I suffered from them was definitely the influence of lupus.  Getting pregnant so soon after my diagnosis, I could not tell the difference between lupus and pregnancy symptoms.  I just did not know my body well enough at the time.

Lupus affected every aspect of how I experienced my pregnancy, from inception to birth.  While I am grateful that I have a healthy and wonderful son, I cannot help but look back and wish I had a pregnancy, unaffected by my lupus.  I am left wondering how different my pregnancy experience would have been, and cannot help feeling a bit robbed.

Announcing my pregnancy to friends and family -- 22 weeks

Announcing my pregnancy to friends and family — 22 weeks

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