living with lupus, day by day, moment by moment

Somehow we made it to two months of breastfeeding.  At first, it didn’t seem like we would last more than a couple of weeks.  Even after putting my baby on the breast, on demand, for seven days, we found out that she lost more than 10% of her birth weight.  We quickly supplemented and I started pumping.  When I did, I realized I had extremely low milk supply.  I was pumping about 10-15ml, less than half an ounce, every 2-3 hours.  First I thought there was something wrong with the pump, so I rented a hospital grade pump but there was no difference. I spoke to lactation consultants, a medical lactation consultant, my endocrinologist, rheumatologist, gynecologist, and pediatrician to try to understand what was causing such low milk supply.  There were correlations, guesses and maybes but no answer.  My thyroid level could be a little off, my Sjogren could possibly cause low producing milk ducts, all my medications could interfere with a healthy milk production, my baby has a restricted gape, my body is under too much duress due to my multiple illnesses — these could all be contributing factors.

When I relayed my disappointment to my rheumatologist about not being able to nurse exclusively, she pointed out that with all the things that could have gone wrong with the pregnancy, the birth, and postpartum recovery, if low milk is our biggest problem, we are doing well.  She is absolutely right. And I knew I couldn’t push myself like I did with my first baby.  The last time I took a difficult breastfeeding situation too seriously, I ended up on my deathbed. Determined not to make the same mistake, this time, I am pumping and nursing only as much as I can. 

And so why do I keep going?  For all the work I put in, nursing and pumping, I produce only about an ounce every 2-3 hours, not enough to even cover half of her daily needs.  But I have decided to give my baby as much milk as I can and also resort to a lot comfort nursing.  She might not get enough milk from breastfeeding, but she benefits emotionally and I treasure these loving moments together.  I have learned that during comfort nursing, there is a lot of bonding, the baby learns to trust and interact, it is comforting and reassuring to the baby, it decreases baby’s heart rate, which helps her relax and sleep, and it improves mouth and jaw development.

With my body being what it is, I am thankful that I can even do this much and also grateful for my baby, who works hard at suckling despite not getting much milk.  My baby and I are in this together!

When I had my first baby five years ago, getting good post-partum care was the last thing on my mind. My son was a preemie, born at 33 weeks and was in the NICU.  So I spent the first 15 days post-birth commuting daily to the NICU, spending all day by the incubator, and pumping every 2 hours.  I didn’t rest, eat well or take care of my body. Things didn’t change that much when I brought him home. I was running myself ragged taking care of my son, and doing nothing to take care of myself.  This led to flares, which led to hospitalization and eventually led to my being on bedrest for almost a year. 

I was determined not to make the same mistake with my second baby.  With my health being what it is, I didn’t have the luxury to push myself even if I wanted to. So, in preparation for this birth, I did not spend all my time researching the perfect crib or stroller.  Instead, I enlisted a lot of help.  I also decided to listen to my mom and hire a Korean post-partum caregiver. 

Korean culture differ vastly with American culture on what postpartum care should be.  American culture emphasizes care for the baby, while the mom is expected to resume daily activities right away.  Koreans believe, however, that new moms should be carefully cared for, for at least 21 days (ideally 100) before she’s allowed to resume normal activities. This Korean postpartum care is called “samchilil” (means 21 days). 

During these 21 days of care, according to Korean tradition, a mom’s job is to just eat well and rest.  Since labor is tough on the body, it is believed that if the mom doesn’t recover fully, she can have chronic health issues in the future.  While a given in Korea, as a Korean-American, this seemed a bit excessive.  I dismissed this right away with my first baby but this time around, with my body needing much care, I submitted myself to the edicts of samchilil. 

For six weeks, I was under the care of my mom and my postpartum caregiver.  They took care of the baby most of the time, except when I was breastfeeding.  I ate seaweed soup at least 2-3 times a day. High in calcium and iron, this soup is believed to clear your blood, contract your uterus and increase milk supply.  I ate specially prepared healthy meals of lean protein, vegetable and fruit.  I had lots of freshly made juices to keep me hydrated and my system flushed of toxins. 

 I kept my body warm, avoided cold foods and wind (though I cheated a lot).  I was not allowed to expend my energy on chores or cooking.  Instead, I was given massages, including breast massages, almost daily. I did a mugwort foot soak and a sitz bath a few times a week. 

It was as amazing as it sounds! At first,I was  uncomfortable with so much self-care but my body thanked me by healing. I just had my six-week postpartum checkup and everything looked well.  If it wasn’t for the care I was given, this check-up might have been different.  After all, even with all the care, I was still sick and had many flares.  But the important difference was that because of all the help, I didn’t have to push myself through the flares, avoiding a bigger flare. 

Falling into a huge life-threatening flare post-partum was my biggest worry; so I am very relieved that my body is holding up.  Sadly, the post-partum caregiver has left, but I have learned the importance of self-care and I am determined to balance the needs of motherhood with that of my body.  My chronically ill body demands it. 

As hard as it was, there are a few things I miss about being pregnant, one was which was being visibly disabled.  While my symptoms of being pregnant – nausea, heaviness, fatigue – are not as severe as my usual lupus symptoms, I was given much more consideration when I was in a public space.  Strangers gave up their seats, held out doors, offered to carry my bags and let me cut the lines.  Also, no one looked at me funny when I used a wheelchair.  There was also an approving view of my “disability” since being pregnant meant that I was supporting a new life, and my disability is temporary. 

Shortly after my c-section, I found myself stuck on a bus that was surprisingly full.  No one offered up their seats and I couldn’t bring myself to ask someone, and then having to explain exactly why a healthy looking woman needs a seat. I couldn’t stand for long so I just got off and ended up taking a taxi. 

I do not wish to look as sick as I feel, but I wish I can carry a card I can show when needed that says “I have lupus, an invisible debilitating illness, and require special accommodations.”

On August 23, I got two things I have been wishing for a very long time — (1) to give birth to a healthy baby girl; and (2) to have an uneventful birth. 

At midnight, I had my last watermelon bite and readied myself for bed.  I was scheduled for an 11am c-section and was given strict instructions not to eat or drink anything after midnight.  It seemed like a rather arbitrary deadline but I wasn’t going to let anything jeopardize my surgery.  I went to bed full of excitement for the first time since I became pregnant. I couldn’t believe that my baby and I made it this far.  38 weeks in the womb! It felt like a miracle.  After all, the odds were stacked against me. 

All lupus pregnancies are considered high risk, and about 50% of these pregnancies end in premature births due to lupus complications.  Approximately 20-30% of pregnant women with lupus will experience preeclampsia. In fact, with my first baby, I had preeclampsia and gave birth to my son 7 weeks early via an emergency c-section. Add to that my advanced age (39 years old) and my history of organ involving lupus flares; and I was a wreck throughout my pregnancy.  So I was beyond excited that this pregnancy was preceding as scheduled. 

As instructed, I arrived at the hospital at 9am, two hours before the scheduled surgery.  I was checked in, given an IV and was hooked up to a fetal monitor.  I was ready! 

Unfortunately, there was an emergency c-section and my surgery was being bumped.  I took it in stride, what’s another few hours?  My husband and I decided to watch a movie (50 First Dates, because who better than Adam Sandler to keep things jovial?) and make the best of the delay. 4 hours later, no word or updates and I was starting to get worried.  My biggest concern was that my general condition was deteriorating.  I started off the day already fatigued, ill and in pain.  With every passing hour, my symptoms were getting worse.  I was afraid I would have a bad flare and wouldn’t be able to withstand a surgery.  I was getting very upset.  After much repeated inquiry to whoever we could get a hold of, we were finally told that we would be going into surgery.  I have waited 7 hours without food, water or information on why there was a delay. 

By the time they walked me into the OR and had me sit on the edge of the bed for my epidural, I was so upset that I couldn’t talk. I sat with my back arched, waiting for the needle, with tears rolling down my cheeks. I felt so weak and sick, and I was scared about how I was going to survive the surgery.  Emotionally, I was a mess.  I stated the morning with such excitement but the gross delay killed my spirits. Instead of being excited about meeting my daughter, I was just upset. 

Of all people, my anesthesiologist turned things around for me.  I don’t remember his name or what he looked liked but I remembered how upbeat and empathetic he was.  He noticed my tears, asked the right amount of questions and got me excited about the process again.  He also held my hand as the anesthesia started to warm my body. 

Soon, the anesthesiologist blended to the background as my husband took a seat by my head and held onto my hand. A curtain was put up so I couldn’t see the surgery and my OB got started.  Things moved fast. I was laying naked on a cold OR table with my arms and legs spread out. I remember how warm I felt. How bright the lights in the room was.  How busy the room seemed with all the doctors and nurses busy at work. I was fully conscious and followed along with what the OB was saying. 

There was some tugging and soon I heard the OB laughing.  My baby girl had grabbed the OB’s tool as she was coming out of the womb. There were delighted laughter by all and it was soon joined by the baby’s strong cry. I remember the excitement as the nurses quickly took the baby, wiped her clean, put on a hat and cut the umbilical cord. I squeezed my husband’s hand and asked if the baby is healthy. He beamed and replied with a resounding yes.  The nurse brought the baby over and told me the baby looked just like me! I was able to put her against my cheeks, touch her for the first time. I couldn’t stop crying. I was so overwhelmed with happiness! And even during that crazy time, the fact that I was able to touch my baby right away was not lost on me.  With my first baby, since he was a preemie, he was wheeled away to the NICU before I even got to see him. 

After a few minutes, my baby and husband were led to a different room while I was being stitched up. I was suddenly experiencing some side affects of the anesthesia. I felt extremely dizzy and nauseous resulting in vomiting multiple times in the OR. After the OB was done, I was wheeled to the recovery room where I spent a few hours in a dizzy haze with vomiting fits.  I was in and out of consciousness with a mix of familiar beeping machine noises and the sound of my husband cooing over the baby. 

The nausea subdued with time and I wa wallowed some ice chips which I greedily ate.  I was then asked if I can wiggle my feet and legs.  This was the test I had to pass before I was allowed to go to my room and meet my baby.  My legs felt heavy but soon, the tingling sensation came back and I was able to move my feet and legs a little.  Enough for me to be moved to my hospital room.  They wheeled me there but I had to move myself to the bed, which proves to be an excruciating exercise with a fresh c-section wound. 

Somehow I got there and when I was settled into my bed, the nurse brought my baby girl Callie, just a few hours old.  She immediately found my breast and latched on.  She fed hungrily and I bawled.  I just couldn’t stop myself from comparing this to my first birth where I had to wait a day to walk down to the NICU to see my son. He was in the incubator for 15 days.  I could not hold him, let alone breastfeed him, for a few days.

If my first baby was a miracle baby, this second felt like my redemption baby.  Each of them have their own story.  I held her tightly as I can and just reveled in how lucky I felt to get a second chance at this.  And I am grateful at how “uneventful” this birth story is.

I woke up Monday morning feeling sicker than usual.  My head was pounding, I was dizzy and nauseous.  My body felt like it was on fire and laying down hurt.  Getting up felt worse.  My stomach was killing me. 

 Ah, another flare but why? Did I do too much on Sunday? Did I eat something I shouldn’t have? I tried to remember what preceded this breakdown of my body but came up with no answers – of course. Lupus flares come without any warning and trying to pinpoint the cause is almost always an exercise in futility. 

Past couple of days were spent in bed suffering from extreme GI issues, accompanied by supercharged symptoms of dizziness, nausea, headache, muscle pain, overactive nerve pain and joint pain. It knocks me off my feet and I am left moaning and whimpering from the sheer torture that my body is going through.  I am drowning in pain, sadness and tears. 

Two days strong and there doesn’t seem to be much improvement.  Sadly, I know that no doctors can help me through the pain.  Experience has taught me that going to the hospital is a waste of time.  There is no relief and I just have to weather the storm. Laying down hurts whatever part of the body I’m lying on.  Sitting up uses energy I don’t have.  Standing up results in dizziness, nausea and shortness of breath.  Multiple trips to the bathroom from my GI issues feels like I climbing Mt. Everest.  I want to sleep but I’m in too much pain to do so.

These unpredictable flares really hits me hard mentally.  Just when I think I have my limitations figured out, seemingly untriggered flares like this remind me how debilitating this disease can be.  It hits you fast and hard. 

The last couple of days, I couldn’t help thinking about how my body will be after birth. I am sick as it is so I am scared that my body will break under a c-section surgery.  Reading how healthy women could expect to take weeks to recover, I shudder to think what my recovery will look like.  How will I ever be able to enjoy and take care of my baby when my body gives out?

I expect not to be able to much after the baby is born but the last couple of days reminded me to prepare for the worst.  I am so disheartened. 

This was a hard movie to watch. 

The story covers about 5 months of James White’s life while he takes care of his mother, dying from stage IV cancer.  It was raw and brutally honest in telling the story of how an illness can take over a person, and become all consuming to the caregiver. 

It reminded me of when I was completely incapacitated a few years ago.  I watched it with my husband, who undoubtedly identified with the son, the caregiver.  

There are moments when the son had to fight with the medical professionals at the hospital, who were insensitive to his mom’s predicament.  This was all too familiar to us.  Whenever I was hospitalized and too sick to speak up, my husband had to be a fierce advocate to get the basic help we needed.

There are moments when the mother wanders off, lost, affected by powerful medication. This was me, many times.  Overtaken by prednisone and other powerful meds, I wandered off all the time. My husband had to track me down with the iPhone finder.

There are moments when the mother vomits, drops her cup, can’t get to the bathroom by herself.  Scenes all that are all too familiar to me and my husband.

Then there was a moment that almost gave me a panic attack.  The mother was speaking and then all of a sudden, she lost her voice.  With no readily identifiable reason, she couldn’t control her body.  That has happened to me many times when I was bedridden.  Less so now but it triggered those scary moments when you have absolutely no control over your body.  It brought on anxiety about the upcoming c-section surgery and the postpartum recovery.  What if it happens again and I become uncontrollably sick again.  It’s a place I never want to be again.  I hope that with all th care I’m getting with this pregnancy, I’ll have better control over my lupus. 

It was a hard movie to watch but one that is definitely worth sitting through. 

Being a mom is hard.  Even if you had all possible advantages you could potentially have – physically, mentally, and financially – it’s still a tough job.  Being responsible for the full time care of another life is just a daunting task. 

One of my close friends recently became a first time mom.  As she navigates the difficulties of motherhood, she started to build empathy for her mother friends.  She used to never understand why her friends with kids were not always available or were constantly late to dates.  She now seems to understand and started to make comments like:  “I don’t know how X does it with 2 kids.” ” I don’t know how Y does it alone, as a single mom.” and “I don’t know how Z does with it with a full time job.”

These comments made over several months started to irritate me and it took me some time to realize why.  Glaringly missing from her recent revelations was a comment “I don’t know how you do it being sick all the time.” I don’t doubt that these other moms have it hard with their handicaps but being a mom with chronic illnessed adds another element of hardship that is hard to fathom.

I often hear from moms how hard it was to parent when they got sick, as most people do, suffering from a cold or some other common ailments.  Usually an email, or a Facebook posts lets others know about the fever, aching body, vomiting, fatigue and/or headaches.  Luckily for most, they recover within a few days/week and they resume normal life.  But imagine, if those hard days of being a mom while being sick never ended? For me, there is no end.  There is only worse.

I have to be a mom on days I can’t walk, when I suffer from high fever, when I have pounding headaches, when I am nauseous, when I am vomiting, when my body is aching from pain, and when I am crushed by fatigue.  And I don’t recover. There is no getting better and resuming life. My life IS being a mom suffering from a multitude of illness.  

The first year of any first time mom is difficult, yes.  But I had to go through that first year, raising my son, while being hospitalized, in bed rest and undergoing chemotherapy and fighting for my life. Pregnant with my second after five years of recovery, which just put me out of the life-threatening stage, not the suffering stage, of my illnesses; I am always anxious about what the post-birth days would bring.

So while I don’t undermine any of the hardships other moms go through, it would have been nice if my friend acknowledged how hard it might have been and how hard it is for me still to be a mom with chronic illnesses. 

“So it’s summer break now, what’d you like to do?”

My son just graduated from preschool and has three months off.  I signed him up for a full month of summer camp in July, and August will be crazy with welcoming the new baby; so I promised him that June will be free time for me and him to explore the city.  Just us, before the baby comes. 

“I’d like to go to the Bronx Zoo, Coney Island, the Math Museum, the Freedom Tower, . . ..”

As he prattled on with his wish list, my heart sank. I knew that I won’t be able to do almost all the things he wants to do.  Even with help, I physically could not handle these trips.  It broke my heart. 

“Ok, you know mommy can’t do the Bronx Zoo.”

“Why not? The last time, I sat on your lap on the wheelchair.” He reasoned.

“Yes, but papa was there to push it. It’ll be too much without him.”

My son looked so disappointed. 

“BUT, we can do the Central Park Zoo with grandma.  That’ll be fun, right?” I offered.

“Yeah, I guess that’ll be ok.” He tried to hide his disappointment but at five, he is already understanding that mommy just can’t do a lot of things.

Being sick means constantly having to negotiate what I can or cannot do with my body. It becomes more difficult when you have to add another party to that negotiation, and its your own child’s expectations that has to be managed. I wish that I was a healthy mom that can do things with him.  He has only known me as being someone that cannot do much, always sick, always saying “but mom is too tired, too sick….”  He has never known who I was before I became sick.  I wish I could show him that I could have been like other moms, that I could have been strong, energetic, fun.  Wishes.

At some point during the early months of my illness, all my feelings turned into anger (so much anger!), and it lives in me still.

In the winter of 2011, after the birth of my son, I started to get really sick.  My symptoms progressively worsened with each passing day.  By spring, I had lost weight and was suffering from immense pain.  By summer, I was barely able to walk.  I was wheelchair bound by the end of August and in September, I was hospitalized multiple times for inflammation in my central nervous system, heart and lungs.  I was released after chemo and with a treatment plan for outpatient infusions in place, I was brought home.  

Throughout this period, I experienced lots of feelings – sadness, frustration, confusion, loneliness, guilt, and fear.  But most of all, I was embalmed in a cocoon of denial – I always felt this was just a phase.  I was certain I was going to get better and I was going to “resume my normal life.”  I was out of the hospital and that must have meant that I was better.  But this was not the end. In fact, it was just the beginning of my suffering.  

 After I came home, I got even sicker.  There wasn’t more that the hospital could do so I was home but I was in pain 24/7.  I couldn’t sleep. I couldn’t eat. I couldn’t walk. I couldn’t talk. I was in and out of consciousness. and after a month of getting worse, something snapped in me.  Suddenly, all I could feel was anger.  I was so sick, so continuously for so long! I didn’t even know someone could be so sick for so long. Didn’t people recover? Isn’t that the normal way of things?

This anger grew, fueled by my worsening symptoms, by the loss of relationships, loss of career, and loss of self.  Five years later, I am still dealing with anger on a daily basis.  It’s as if my chronic illnesses and anger have become best friends and travel together. 

It is common for individuals suffering from chronic illnesses to feel angry about their disease. Many are familiar with the Kubler-Ross model, commonly known as the five stages of grief – denial, anger, bargaining, depression, and acceptance.  I think I am still at the anger stage.  Even though I have learned to keep it in check, it’s always bubbling underneath, biding its time to unleash its poison in me.  I feel like I’m always walking on a tightrope.  It is absolutely exhausting and many time, I cry out in anger.  And the worst thing is, both my anger and my physical symptoms can be triggered by unknown things.  I seem to have little clue as to why something angers me just as I don’t know why something sends me into a flare. Many days, I have learned to “manage” my anger but most days, I just want to lash out and throw things against the wall!!!  

It sounds crazy.  A second pregnancy? After all the health crisis that I went through?  With all the health problems I am still dealing with? Yes, it is crazy, or as one friend commented “I hope you are not pulling a Steel Magnolias!” 

It’s a real gamble but ever since I became pregnant with my son six years ago, the question of whether I was going to have another child was always there.  It was there throughout the pregnancy.  It was there when I gave birth at 33 weeks.  It was there when I was undergoing chemotherapy for my lupus flare that was attacking all my vital organs.  It was there when my son turned one and I couldn’t walk from the effects of my illnesses.  It was there when my son turned two and I was still suffering from myocarditis, with difficulty breathing from the fluids in my heart.  It was there when my son turned three and I was on toxic immunosuppressants to keep my flares from attacking my organs. It was there when my son turned four and I was recovering from a total thryoidectomy to remove my thyroid cancer. 

All the while, the answer was always a resounding “no”.  I have had many doctors warn me against having another child. And over and over again, I tried to convince myself that having another baby would be a risk that my family and I could not afford to take.

But of all the many losses I suffered from accepting my illnesses, giving up the chance to have another child was a theory I had to test.  I felt I had to go all in and see if it could be done.  I had a small window where I was able to lower all my toxic drugs and even though I suffered greatly, it wasn’t affecting my vital organs.  That doesn’t sound like much, but it was my best chance.

My son is now five and I am 18 weeks pregnant.  I feel nervous and anxious about this pregnancy every day. I worry about the the high risk nature of my pregnancy. I bemoan the fact that my body seems to be an unhealthy host.  I suffer from the added symptoms of pregnancy which exacerbates my existing symptoms.  I lose sleep over how I wil be able to take care of a baby when I can’t even take care of myself right now.

All through it all, however, I never forget how grateful I am that my body is giving me another chance at bringing a life into this world.  I feel truly blessed.  And the only thing I hope for is a healthy outcome for my baby and a good recovery for me.  Please send good thoughts our way….!