living with lupus, day by day, moment by moment

“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….!

Since I was diagnosed with lupus six years ago, there hasn’t been a moment when I am not aware of my how sick I am.  Being chronically ill has become a part of who I am.  A big part.

I wear many hats throughout the day, that of a mom, a wife, a daughter, a sister, a friend, and a woman.  But no matter what hat I’m wearing, I seem to always be wearing the chronically ill hat.  I can’t seem to take it off. It’s always there, the pain, the fatigue, and the sickness. 

So sometimes when I read messages like:

“I am not lupus.”


“I am stronger than lupus”


“I have lupus but lupus doesn’t have me.”

I have to simply disagree. I understand that these are messages of encouragement and empowerment but to me, it doesn’t ring true.

I do feel like I am lupus, yes, albeit many other things.  I am not ONLY lupus but it is a big part of who I am everyday. Lupus has taken over parts of my identity, and I am no longer a lawyer, I am not a fully engaged mom, wife, daughter, sister, friend or self.  I cannot do or be anything without having my chronic illness affect it. 

I never feel like I am stronger than lupus.  Most days, I feel like it has me beat.  Everyday feels like a big battle just to live the semblance of a life I have cobbled together, in the wake of my big flares ,that left me severely sick and limited. 

And I definitely feel like lupus has a strong hold over me, my life and those close to me. Its grip is strong and its demands relentless. 

I fight hard against my illnesses but unfortunately, they are just a part of who I am now. 

If an experience is a great teacher, there is no greater teacher than a repeated experience.  It allows us to have a point of comparison between different times in our lives, and edits whatever imaginary views we have in our head. 

Ever since I became sick, I have a hard time adjusting my realities.  I don’t know what my real, versus perceived, limitations are. Time moves slowly, my illness fluctuates from sickness to illness to sickness, and recovery is illusive.  Sometimes I can do more than I think and sometimes I can do a lot less than I think.

A week ago, I was fortunate enough to travel through Costa Rica on a weeklong vacation.  It was my first “real” trip since I was diagnosed with lupus. The last time I was in Costa Rica was almost 13 years ago.  I was younger, yes, but more than that, I was healthy!  Up to that point, I haven’t experienced an illness more serious than a flu.

This trip was a lot different. I could not take long hikes in the cloud forest looking for quetzal birds or howler monkeys.  I didn’t do a night hike looking for night crawlers.  I couldn’t walk through the hanging bridges to view the active volcanos.  I wasn’t able to zipline. I couldn’t go horseback riding on the beach.  I couldn’t bask in the warm Costa Rican sun. 

Yes, it totally made me upset.  On top of not being able to partake in all of these activities, I spent much of each day just resting. It was hard not to compare this trip to the one I took when I was a healthy person. 

But then reality adjusted itself and I was able to be grateful for my vacation.  Four years ago, when I was hospitalized and undergoing chemotherapy, I did not think I’ll live to be able to even walk again.  When I was bedridden and fighting for my life, a trip like this? – it was unimaginable.  So this repeated experience, while it showed me how limited I am now, it also showed me how far I have come within the context of my new health reality.  I leaned to enjoy the beach at sunset, and instead of a hike, exploring the forest on a nice river raft. 

I do not believe food alone can be my medicine.  I have serious life threatening diseases that require life saving drugs like immunosuppressants for my lupus, coreg for my myocarditis and synthroid for my athyroidism.  But medicine alone cannot maintain my well being.  In order to be the best I can be, despite my illnesses, I need to have a healthy and balanced diet. 

There is no single diet that has been proven to work for lupus (unlike a gluten free diet for celiac disease, for example).   And since I have multiple overlapping diseases, what works for one disease might not work for another.  Over the years, what I have found works for me and my body is to eat a healthy balanced diet, incorporating superfoods dense in nutrition as well as antiinflmmatory food, and also making sure to avoid high fat, high salt, high sugar, processed and known inflammatory food (e.g., alfalfa sprouts can lupus flares).  I am also learning to really listen to my body and how it reacts to the food I eat. 

At the core of a “balanced diet” is to give our body’s organs and tissues the proper nutrition to function effectively.  Basically, this calls for eating mostly fresh fruits and vegetables (eating local means more nutrient dense food since it’s fresher), whole grains, lean proteins (e.g., fish, lean meats, beans, nuts and tofu), healthy oil (e.g., olive, avocado and coconut) and healthy dairy (e.g., lowfat yogurt). It also means cutting out processed food and dramatically reducing your sugar, salt and fat intake. 

Under the umbrella of each food groups I should have daily, I try to incorporate superfood (e.g., spinach), antiinflmmatory food (e.g., salmon) and targeted food (e.g., fiber dense food like oatmeal to help with my constipation).  I also eat small portions but eat more frequently to aid in digestion.  Ultimately, you have to listen to your body and hear what it’s telling you.  And the body and what it needs changes often so it’s a daily journey to figure out how best to achieve a balanced diet fit for my body. 

What works for you?

When my lupus flare progressed so rapidly that I was bedbound for months, I bid my time until I was able to join the living.  There were so many things I wanted to do “once I got better.”  While over the years my conditions improved, my body never fully recovered.  I became a spectator in my own life.  Hence, I would attend dinners but never be fully engaged.  I would take my son to the museum but sit back on the bench, on the floor, anywhere, always sitting and watching rather than actively participating.  In almost all the activities I engaged in, I felt like I was “just there” and no more than that.  It would get me down and the frustration shadowed any enjoyment I might feel.  I always felt like this kind of life wasn’t worth living.  After all, being able to participate in life only 10-30% while giving the best parts of myself to pain and illness seemed a fruitless way to live. 

This was absolutely the wrong outlook.  

I only regained my consciousness after about six months of enduring a psychosomatic flare (where my brain was inflamed) in early 2012.  After that, I had to endure the inflammation that wrecked my entire body (heart, lungs, etc.) for the rest of the year.  So it wasn’t until 2013 that I started to slowly regain my life (and my walk).

The last three years of sickness and recovery has been excriciatingly painful.  And I am still on that journey. 

Living life is just hard.  Getting up every morning is hard. Staying home is hard.  Going away is hard.  I try to live my life despite my illnesses but it is just so fucking hard! 

But as we all do at the end of the year, I was feeling reflective and looked back at all the memories I have created in the last three years.  And I was so happy that I did fight everyday to have some semblance of a life.  I was glad that I took my son to Disney World (even though the back story is that I had to rest a lot, skip some of the activities and some times just stay in bed), I’m glad I was able to pack my son lunch (even though I would feel incredibly sick and rest all morning to recover), I’m glad I met with friends (even though I was feeling sick and had to talk myself out of the anxiety), and I’m glad I had date nights with my husband (even though I would usually be sick during our dinner or on our cab ride home).

At the end of the day, I was there! I can’t be there all the time.  And when I’m there, I might not be fully understand engaged, but dammit, I was there, and I think, that is enough.  And I’m going to be happy with that. Here’s to 2016 and more memory making!!! 

“How are you?”

This is probably my most dreaded question. 

After five years of living with lupus, I really don’t have a good answer.  Not one that is expected of me anyways.  I really just want to say the truth and answer “absolutely shitty” and be done with it.   After all, how does one think a person who is sick 24/7 is doing?  Not better.  Not fine.  Not good.  Never. Good. 

Over the years, I have tried to find a way to answer this innocuous question with some grace.  But with the holidays, it has become a real source of stress.  While I have become quite comfortable with my regular rotation of acquaintances (i.e., medical staff), the holidays bring on more personal social interaction which solicits inquiries about my well being. I really hate it.  I have been able to come up with some story about how sick I was, how I’m doing better, onwards with life….! But it’s all gibberish.  I am sick.  I feel like absolute crap all the time! Can I just say that? 

I wish that people would ask me more concrete questions that I can answer with more sincerity. Such as —

– “How was your day? Week? “

– “How is Harry? How is being a mom?” 

– “What are some of your recent doctor visits?”

– “How do you like staying at home?”

– “Have you found some hobbies you can do?”

– “What have you been writing about on your blog lately?”

These types of  defined questions, I can answer.  Just don’t ask me an open ended question of how I am.  I mean, can anyone really answer that?

(I wrote about my thoughts on greetings here:

Our whole life is guided by expectations.

Whether concretely layed out or not, we all have some vague idea of what we want to do, who we want to be with, what our family might look like, what our vacation will turn out to be, and so on.

Our expectations are adjusted on a daily basis by “reality” and depending on how well we do this,our expectations will become a source of contentment (expectations met), happiness (expectations exceeded), discontentment (expectations not met) or sadness (expectations failed). 

Lately, I have been having a hard time adjusting my expectations because I can’t seem to reconcile my two realities.  Actually, there is only one reality for me, that of a sick person, but the former healthy self is having a hard time letting go. So there’s an inner conflict that seems to be undermining any chance I might have at contentment or happiness.  

Acceptance and letting go is apparently a very hard thing to do.  Deep down, I cannot seem to accept my life as a sick person.  Even as I battle illnesses, fatigue and pain on a daily basis, another part of my brain seems to be plotting away at a life much more ambitious than what my health would allow for.   For example, if I am able to take myself to the hospital, one side of me thinks “Hurray! Congratulations! You managed to get out of bed, take your meds, dress yourself and make it to the hospital all on your own.  Bravo!!!” (Here enters contentment and even happiness), but the other side is saying “So big deal, you are going to the hospital again because you are sick, you could be doing something else with your time but you can’t. And didn’t you feel like vomiting the entire trip here?” (Cue discontentment and sadness).

Like a crazy person having conversation with herself, I am constantly negotiating my two different selves.  I know that I will never be healthy again, but I can’t seem to let go of that other life, that other reality, those other expectations.  The sooner I do, however, I can try working on some sort of contentment with my new normal.

I can’t work.  That is not the same as saying I won’t work.  The latter assumes a choice but with my illnesses, I have no choice.

When I was first told that I have a mysterious “autoimmune” disease that is incurable but not necessarily fatal, my only concern was how this illness was going to affect my career.  Truly, I should have ordered some background reading on lupus, on autoimmune diseases, on being chronically ill and what it’s like to live with an invisible illness, but I didn’t do any of that.


The only book I ordered after my lupus diagnosis is “Women, Work and Autoimmune Disease” (Rosalind Joffe and Joan Friedlander), a book encouraging women with chronic autoimmune diseases to “stay employed to preserve their independence and a sense of self.”  I really took the book’s messages to heart.  Indeed, I wasn’t going to let an illness stand in the way of working, of being financially independent and of pursuing a career I loved.  Of course, underlying all this was a huge assumption that I COULD work if I wanted to.  That working was my choice, something within my control.  I learned the hard way that it is not.

My first day at work as a young lawyer, my office mate and I found ourselves filling out a stack of HR forms.  One of the forms asked if we wanted to increase our disability plan, in case we couldn’t practice anymore.  25 years young and healthy, I could not think of anything that could possibly prevent me from practicing law.  In fact, my office mate and I reasoned that at our very own law firm, we had blind lawyers, deaf lawyers and lawyers in wheelchairs; we just couldn’t picture a scenario where practicing law wouldn’t be a possibility!  At that time, it never occurred to me that there are debilitating, chronic illnesses, that can prevent you from working.

So when I found myself fighting for my life a year after my diagnosis, I was so angry at this book. I felt I was misguided.  Instead of just arguing why we should keep working, why didn’t the book tell me that lupus is life threatening?  That sheer willpower alone will not allow you to fight through it.  That it isn’t possible to “just keep working girlfriend.”  This book made it seem like if we tried, we can overcome the obstacle of the illness, and work.  And while the disease activity is different for everyone, this is not the case for me.  I am sick all the time.  I only have two states of being – sick or ill.  I cannot push myself even though I want to.  With my lupus, pushing myself means I will be sick to the point of endangering my life.  If I push past my fatigue, I will get sick.  If I push through my sickness, I will become ill.  Never mind the pain!

There are plenty of people with autoimmune diseases who are able to work, full-time, part-time, with or without accommodations. But I know many others for whom working is not a viable option.  The issue I have with this book is that it sends a message that anyone with an autoimmune disease can work, if they tried.  Trust me, many have tried and many wish that we could work.  Being disabled sucks.  Being limited by your illness? Sucks.

I get asked all the time if I miss working.  The answer is so simple – yes, absolutely.