living with lupus, day by day, moment by moment

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. 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 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 post 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….!

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!!!