living with lupus, day by day, moment by moment

I first got sick with lupus on January 23, 2010. It was the first night I stayed up bawling out loud in pain. I have never experienced such an intense and prolonged pain before. But in the near 9 years I have been sick with lupus, I have experienced all kinds of pain and continue to live with them all. My pain is all encompassing, relentless and severe.

September is Pain Awareness Month. I have wanted to share my experience with pain for some time, but I have found it a tricky topic to discuss for couple of reasons. First, pain is difficult to describe in plain terms to someone who has not experienced it and second, pain level is subjective and often met with skepticism by most people. But pain awareness is important because people with pain tend to hide their suffering, mostly to their detriment.

So here’s all the pain I experience, some alone, some combined, but always, every minute of every day.

*muscle pain: all throughout my body, my muscles feel like it’s burning, as being thrown into hot flames. Sometimes the burning comes with weight, as if your burning muscles are bring steam rolled by a pavement roller. Other times my muscles feel like it’s being punched and kicked by someone. Sometimes pinched and bruised. I often feel like my body is a heavy armor with inverted spikes built inside making it painful to move or even stay still.

*nerve pain: all throughout my body, my nerves feel like it’s unsettled, like a bunch of unstable atoms or pinballs jumping around. I feel pins and needles in my periphery joints, making walking and using my hands and arms incredibly painful. I used to liken taking steps to walking on broken glass. At the same time, I suffer numbness throughout my body, having virtually no feeling below my waste, but also feeling extreme sensitivity and pain in areas that I could feel.

*joint pain: my joints are stiff, achy and swollen. Any strain on them feels like a sprain, making simple tasks like opening a can a huge risk. Yes, typing entry has been a painstaking ordeal.

*chest pain: my chest feels compressed and sometimes there are sharp pains. Breathing feels labored like I’m breathing out of a straw. Laying down feels like I have a few textbooks on top of me.

*headaches/migraines: I have a constant low grade headache that many times turns into a migraine causing extreme pain and nausea. My whole head feels like it’s being squeezed and pounded, my eyes feel they are gorging out, there’s often ringing in my ear and I often vomit. I also have ocular migraines with flashing lights.

*stomach pain: dull to sharp pain


*facial pain: my face, especially my jaws suffers from dull, throbbing “itchy” pain.

*eye pain: my eyes are always dry and feel strained.

*skin rashes: I break out in rashes which are sensitive.

*mouth/nose sores: I constantly have mouth sores and sometimes, nose sores as well.

*mouth/teeth sensitivities: my whole mouth is very sensitive where the roof of my mouth and my gums feel like a layer of skin is missing. My teeth is also extremely sensitive.

*back pain: I suffer from sciatica and back pain constantly.

*cold sensitivity: my hands and feet have restricted blood flow and are very sensitive to cold. Winters are hard but even handling cold food is extremely painful as it feels like an ice burn.

My pain can be caused by all different types of illnesses that I currently have (e.g., fibromyalgia, sjogrens, raynauds, peripheral neuropathy, etc.) and it is often difficult to pinpoint exactly what is causing what. But at the end of the day, lupus seems to have been the root cause. Mainly because it seems to have caused all my other ills. When I had my big lupus flare in 2011, my heart, lungs and central nervous system were affected. This trauma left my body with nerve, muscle and joint damage and changed the way my brain processes pain.

For two years during and after the flare of 2011, the pain was so intense that I could not walk, sit or lay down. I could not sleep for more than one hour at a time. I could not carry my baby. I could not do anything. With the third year, and every year subsequent, I was able to do more. This was a result of several things working together. A combination of working medical treatments, finding modes of some pain relief, accepting and working around the pain. Even so, nothing I do is without pain, I am never without pain and I haven’t had a single night of good sleep for 9 years. I have forgotten what it’s like to be without intense pain.

I have been asked, well, if you truly are in so much intense pain, all the time, how do you live? I have fumbled with an answer for a long time. But after living with what really is unlivable pain for so long, I have learned the answer is quite simple: I have no choice.

In this I am not brave or especially strong. Like millions who suffer from chronic pain, I have no choice but to live with the pain. I have no way of getting rid of it. It is part of who I am now and the only way I can be pain-free is if I were to die.

And I choose life, despite it all.

Each medication I take is tied to a certain emotion and memory. For example, the prednisone I take everyday has a long history. It was one of the first lupus meds I took. It both cured me and threw me into delirium when I took it in high doses. It left visible scars on my body. I love it but fear it. And the fact that I take a daily low dose now feels almost triumphant.

Today I start a new medication #Myfortic a.k.a. #mycophenalateacid, and I am feeling a bit devastated. This is a strong type of #immunosuppressant, a heavy hitter lupus medication. It is a slow release version of #Cellcept, which I was on before.

When I got my first big flare 6 years ago, I went through several rounds of #chemotherapy and was put on Cellcept for years. When I decided to try for baby #2, and my labs were stable, I switched to a less potent (and arguably less toxic) immunosuppressant #Imuran. It felt like a small victory. But lately, my lab numbers haven’t been looking good and my rheumatologist recommended a switch back. It crushed me to think of going back to this med. After spending the last six years eliminating non-essential drugs, I thought I was on my way to eliminating some of these big guys. This feels like such a step back for me. And I am both sadden and reminded of the fact that lupus is a chronic illness. Management always ongoing.

My doctor tried to cheer me up by saying that this is a lateral, not a backward move. I hope so.

Today, as per my usual visit to the doctor, I filled out a wellness form. I checked off nearly all the listed the symptoms. And as I was checking them off, I can only think, no wonder I am so freaking miserable! I live feeling All these symptoms, All the time!

I am now approaching my eighth year since lupus became my constant, unwanted companion. My relationship with lupus is complicated. In the beginning, I ignored it and it became angry. Lupus doesn’t like being ignored. I became incredibly ill. Then I spent some time being in fear of it, as I lost my health and my life as I knew it. Then I tried to appease it, fight it, negotiate with it, and manage it. No one path seemed to work. Like I said, it’s complicated.

So where am I with it now?

I don’t ignore it, but I try not to let it in too much.

I take my meds. I go to my doctor’s visits. I rest. I listen to my body. I watch what I eat. I am mindful. But I have given extra doctor visits, extra procedures, extra meds, extra diets a rest. For now. I am somewhere between wanting to ignore it but only managing to distract myself from it. It is just enough to keep my sanity because reminding myself that I will never be rid of lupus feels like being buried alive. I can’t breathe when I think about it.

If that makes any sense.

Being sick is lonely. And only the sick really knows what it’s like to be sick. Don’t get me wrong. Over the years, I have kept and made friends who have tried to understand and empathize with the struggles I go through everyday. And their support is absolutely invaluable to me. Period.

But unless you are chronically ill, it is hard to really understand what the minute-to-minute hardships are, how hard it is to find reasons to keep fighting, what it takes to “do life” daily, how much you want to work, why you are jealous of simple things like running, how devastating it is not to be able to care for your children, what it’s like to be disabled, how anxious one feels living with a time bomb body, how sad it is to be severely limited, why you can’t plan your day with an unreliable body, how one learns to live through pain, why it’s easier to have a “healthy person” persona, how hard it is to not have a single night of restorative sleep, what it feels like to know there is no relief, how it feels to know that you will be sick for as long as you are alive. 

And what it’s like to long for a day of feeling well. Just one day.

So on especially difficult days, when I share these thoughts with in-person and online fellow spoonies, the “me too”s I hear makes me feel understood, validated and less lonely. And for this, I am grateful. 

It happened shortly after my son Harry turned six.  After a (not unusual) episode of witnessing my irritability, he whispered “I’m sorry you are so tired mom. I know it’s Lupus.”

It absolutely broke my heart to hear him say that. 

While I am glad that he is able to sympathize, I hate the fact that he is exposed to this side of me — sick, irritable, forgetful, anxious, pained, fatigued, sad and zoned out.  I hate it because while I am able to put on acts of normalcy for the rest of the world, they are in short spurts and I cannot do it long term for my son. I hate it because the kind of empathy my son gained at such a young age (only six!) comes at a hefty price of growing up with a mom with many limitations. 

Most of all, I hate that my son is growing up thinking that living with someone like me is normal. I try hard everyday to limit how much my illnesses poison our days but it’s so hard. And the guilt, it’s always there. 

It was a dark day for many Hillary supporters today. And some nonchalantly dismissed the potential harm of having Trump as our president-elect with a “how much damage can he possibly do.?” It remains to be seen if he follows through with his promise of racist and misogynistic policies. I hope not. 
More concretely, I do fear that in his first 100 days in office, he will be assembling a cabinet of somewhat questionable morals, appointing extremely conservative judges, including our ninth Supreme Court Justice, and he might successfully repeal the Affordable Care Act.

The Act, among many other benefits, provided protection for patients with preexisting conditions, like me and other chronically ill Americans. Under the Act, health insurance companies can’t refuse to cover you or charge you more just because you have a “pre-existing condition” — that is, a health problem you had before the date that new health coverage starts. 

I fear that if Trump succeeds in repealing the Act, many chronically ill Americans will lose this much needed protection. Please take action however you can so that this does not happen. 

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.