living with lupus, day by day, moment by moment

“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.

Before I got sick at the age of 33, I didn’t even have a steady primary doctor. Five years later, I now have a large collection of doctors and specialists that I regularly see.  Yet, I still struggle with the question of whether I am seeing the right one.  Over the years, I have developed a three prong test to help me decide if I should keep the relationship going or just part ways.

1.  First and foremost, I have to to know that the doctor is qualified and know what (s)he is doing.  For this I look to credential, affiliations, reviews and his/her reputation. 

2.  Almost equally important as the high credential is how caring the doctor is to your condition.  They will be dispensing important medical advice to you and if (s)he doesn’t do it with care, it doesn’t matter how highly ranked they are on U.S. New World & Reports.

3. Lastly, this doctor needs to believe you.  (S)he needs to trust you when you describe your symptoms, especially when they cannot look to X-Rays or blood lab results for verification.

The doctors I stay with meets these trifecta of requirements.  I realized that if all three are not met, I am not receiving optimal treatment.  The qualified doctor will administer sound treatment.  The caring doctor will be communicative and go beyond the minimum.  And the doctor who believes you won’t dismiss your “invisible” symptoms and will explore less obvious alternatives. 

I came up with my requirements the hard way.  When I was first diagnosed  with lupus, I found a rheumatologist based on (1) distance from home/work and (2) ranking.  Indeed, he was ranked as the best rheumatologist in Manhattan, and his office was only 5 minutes away from my office.  But he lacked care and ultimately, this resulted in mismanagement of my disease and unchecked gross inflammation of my organs.  

So how do you know if the doctor believes you and care?  You always have a gut reaction to the appointment sessions, but it’s also good to ask for the doctor’s notes and review what (s)he wrote about the appointment.  My former neurologist is very qualified and came highly recommended but she didn’t seem to get my symptoms and also seem skeptical of them.  When I read her report later on, she described my statements as “complaints” and that I was “irrational” and “defensive”.  She also stated that “I described the pain poorly.”   This is not the kind of doctor I want in my corner when I’m fighting lupus!

I’m so over my illnesses.  Unfortunately, they seem to love me and are holding on tight, causing me to stumble through my days, letting me just survive.  It frustrates me so much!  And frustration is evil, often inviting other friends along for the ride.  Hello anger, anxiety and depression!

I usually find that “frustration” is the ringleader of these unpleasant emotions.  So I am trying to deal with not being frustrated, to nip this negative feeling in the bud before things get out of hand.  It’s not easy.  In any given day, my illnesses stop me from doing a lot of things.  This happens when I don’t even have many things on my plate.  For example, I love restorative yoga and meditation.  If I was a healthy person, I would find the time and energy to go almost everyday.  In fact, when I was working, I sought out yoga before or after work, sometimes during the lunch hour!  But now, I am frustrated by how limited I am.  I look forward to my ONE restorative yoga class a week.  It’s Wednesday’s at 12pm, the most optimal time I can find.  Even still, I can’t make it every week.  Today was tough, but I was all ready to push through.  However, even after I changed into my yoga gear and packed my water, I was too sick to actually make it.  I slunked back into bed, texted a lupie friend that I won’t be able to make it and immediately started to feel sorry for myself.

I was frustrated (“I’m missing yoga!”), which made me angry (“why do I have to miss yoga, I was looking forward to this all week”), which made me sad (“why am I always so sick”), which made me anxious (“what if I am too sick to make my doctors appointment later today too”), and so on.  I didn’t want to stay in this negative place.  And the only way out for me was to shift my thinking.

Here is how I do it.  First, I really think about what is making me upset, here, missing my weekly yoga class.  Second, I try not to let this frustration spill over to other areas of my life.  For example, not making yoga does not mean I will fail to do everything today or this week.  Third, I try to meditate and be mindful of how I can compensate for my frustration.  Can I do stretches at home? Lastly, I try to make a hopeful plan.  Can I bring myself to look forward to yoga next week? 

Stopping my frustration from growing helps me to spend precious time and energy to take care of my mind and body, so that even though one opportunity was missed, I can focus on the next thing coming. 

September has been an exceptionally hard month mentally and digging myself out of the dark place I fell into took extraordinary mental agility.  It feels like depression is an inevitable part of my battle.  It is hard not to get depressed about being sick everyday, being in pain everyday, being in fatigue everyday, not being able to do much everyday, and so on.  The weight of my illnesses was pulling me down.  I was starting to feel hopeless.  After all, I knew that the source of my depression is my illness, but since my illness will be with me until I die, so will my depression ? 

My usual tricks of cheering myself up and giving myself pep talks were not working.  So I had to dig deep.  I am a very visual person so I made myself a “happy board” to remind myself of why I am fighting this battle daily, what keeps me afloat and what makes it all worth it.  

Here is what I found out:

1. My family who gives me all the cuddles I need.

2. My time at the shore finding my center.

3. My incredible love for and from my son.

4. My beau and I, when we were hopelessly in love.

5. My love of cooking.

6. My beau and I, working on “in sickness and in health”

7. My family, who stands by me and give me strength.

8. My love of gardening.

9. Precious time spent with friends.

10.  Being able to be a mom, even if it’s just packing lunch.

11. Sharing my interests with my son.

12. My love for and from my wonderful “adopted” family. 

13. My love of restorative yoga.

14. My love of entertainment!

15. My happiness in being able to connect with support on social media.

16. My hope that I will regain the old me, to some degree, pre-illnesses. 

What will be on your happy board? 

It is too hard to get up from bed because I have been tossing and turning all night from the pain, but I do.

It is too hard to walk because my muscles and joints are very stiff, but I do.

It is too hard to sit down on the toilet because I feel dizzy, but I do.

It is too hard to brush my teeth because my mouth hurts too much from multiple open canker sores, but I do. 

It is too hard to bend my head down to wash my face because of the pounding headache, but I do.

It is too hard to make myself coffee because I am too weak, but I do.

It is too hard to eat my toast because I am too nauseous, but I do.

It is too hard to take all my pills because my stomach hurts, but I do.

It is too hard to get dressed because my muscles ache, but I do.

It is too hard to wear my shoes because the nerves causes too much pain, but I do. 

It is too hard to go to my doctor’s appointment because walking is hard, but I do.

It is too hard to fill out all ththe medical forms because concentrating takes ten times the effort than it used to, but I do.

It is too hard to sit and wait for my appointment because of the numbness and tingling in my butt l, but I do.

It is too hard to explain and consult with the doctor because I cannot seem to convey all my symptoms, but I do.

It is too hard to stand and wait for the elevator and car back home because it feels like my head is spinning, but I do.

It is too hard to pick my son up after school because I feel like I have already climbed Mt. Everest, twice, but I do.

It is too hard to wait for my son outside his class because my legs feel like they are going to give out, but I do.

It is too hard to converse with other parents waiting for their kids because I feel like I’m so very sad inside, but I do.

It is too hard to carry my sons backpack because the joints in my fingers are in pain, but I do.

It is too hard for me to ask my son for some time to rest because he hasn’t seen me all day, but I do.

It is too hard for me to make dinner because my body feels like I’m carrying an extra 100 lbs, but I do.

It is too hard for me to hide how hard the day has been for me from my husband, but I do.

It is too hard for me to ask my husband to put our son to bed because I know he had a long day too, but I do.

It is too hard for me to change into my pajamas because my body has difficulty bending, but I do.

It is too hard for me to lie down to sleep because when the room gets silent and the light goes out, my pain gets louder, but I do. 

It is too hard for me to fall asleep because my muscles and bones feel like they are being kicked, punched, raked over, pinched, burned, electrocuted and pricked, but I do.

Then I wake up, even when it is too hard, and repeat the day, over and over again.  And this is a typically “good” day.  Many days, I have extreme fatigue, extreme pain or extreme illnesses thrown into the mix where I cannot even do the little things I set out to do.  When I have vomiting fits, or when I cannot even lift my head from fatigue, or where the pain is so intense that I’ll be coiled on the floor crying in pain. 

And I cry a lot, almost everyday.  Mostly alone.  I fight through each day, but sometimes, it all becomes too much.  This last week, I fell deep into depression and I felt too hopeless to even try to fight it out.  I don’t like staying in this unhappy place but my usual tricks to fuel me isn’t working.  Maybe a little more time…?!?! 

While lupus is an invisible illness, sometimes the treatment of it can cause visible marks on my body.  One of the go-to drugs for treatment of lupus is a glucocorticoid named prednisone, which is a powerful anti inflammatory drug.  It’s a double edged sword, however, fighting against lupus but also harming my body.  While cortisol is naturally produced in our body by the adrenal gland, the prednisone elevates it to an unnaturally high level.  Therefore, taking too much for too long can cause what is known as the Cushing’s syndrome. 

The most common symptoms of Cushing’s involve progressive obesity, such as weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face), and between the shoulders (buffalo hump).  Another common symptom is changing of the skin, such as pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms; thinning fragile skin that bruises easily and slow healing cuts, insect bites and infections. 

Many also experience a number of other symptoms such as muscle weakness, fatigue, depression, anxiety, irritability, cognitive difficulties, headache, bone loss and loss of libido. 

I have been on prednisone for over five years and have gone up as high as 80 mg per day (I’m on 2 mg/day now, which is on the vey low end).  I have experienced all of these symptoms and continue to experience many of them to this day.  At the height of my prednisone high, I gained 60 lbs, was hallucinating, had striae marks all over my body, and couldn’t walk because of the muscle weakness. 

Cushing’s syndrome caused by steroids can be reversed if you stop taking the drug, which is not an option for me.  It took me four years to taper the dose down from 80mg to 2mg.  I am hoping that many of the syndromes will go away but the visible manifestations of the moon face, buffalo hump, pendulous abdomen and stretch marks continues to bring my spirits down.  Especially since these symptoms don’t make you look sick, just overweight.  In this case, the rule that you are what you eat doesn’t apply…..!

I started my day at the U.S.Open having my spirits deflated by an ignorant employee who was waiting for the elevator.  These elevators are reserved for employees and handicapped visitors to the stadium, and upon seeing me, he told me that I can’t ride this elevator because I am not handicapped.  This is how this conversation went down in the elevator:

“You can’t be riding this.”

“I have lupus.”

“But you are not handicapped.” He scoffed.

At this point, my husband interjected and said “You are not a doctor, she has lupus and has limited mobility.”

“That doesn’t mean she’s handicapped.  My mother-in-law has lupus and she moves just fine.  Who made you the boss. You have some nerve.”

At this point, we all got off the elevator.  I was seething.  It was unbelievable that even after hearing that I have an illness, he refused to believe me.  So I followed him and confronted him.

“On what basis do you think I am not handicapped? Lupus affects everyone differently.”

“Well, you have no access.  Usually a handicapped person has a wheelchair or a broken leg.”

“But you don’t know what disabilities I have that are invisible.  I have lupus, a heart condition, nerve damage and surviving cancer…”

“You didn’t tell me you had cancer.”

“That’s not my disability, my disability is lupus, not cancer.”

“Do you have certification? Am I just suppose to take your word for it? You look fine.  You could be lying.”

“Why would anyone lie about being disabled? If I could walk up, I would!”

“Well, it’s not like I stopped you.  If I was doing my job, I would have not let you ride at all.”

“That is not your job.  And you are discriminating against everyone with an invisible illness.!”

I was still angry but I was getting nowhere with him and decided to walk away so I can enjoy the day.  I am hoping to reach out to the USTA soon so that I can help limit these kinds of interactions in the future.  I was very upset that I had to defend my disabilities.  It’s hard enough to have limits without having them be questioned. Interactions like these shuts people down and make them shy about using the special accommodations that they need, leading to isolation.  This shouldn’t happen. 

I take 9 different types of medication daily.  Of the nine, I consider one of them to be a lifesaving drug, a heavy hitter, both in efficacy and side effects.  It is azathiopren (Imuran), an immunosuppressant.   

Immunosuppressants are a type of medicine that suppress your immune system.  In the last four years, I have taken three different types of immunosuppressant drugs.  My first was a few rounds of chemotherapy, cyclophosphamide (cytoxan).  Next, I took a few years of mycophenolate mofetil (cellcept), until I switched to Imuran last year. 

Immunosuppressant drugs are used when lupus becomes life-threatening and causes kidney inflammation, lung or heart problems, and central nervous system symptoms.  Hence, they are usually only prescribed if you have severe lupus.  This is because this type of medication is powerful and can cause side effects including, but not limited to, vomiting, bruising or bleeding more easily, headache, liver damage, an increased risk of infection and cancer.  Some of them can also cause birth defects.

I certainly live with many of these damaging side effects everyday.  But without the immunosuppressant, there is a fear that my lupus will cause my immune system to attack my vital organs again.  My hope is that at the end of the day, I am weaned off this and my many other drugs.  But until then, I am thankful that immunosuppressant drugs are keeping me alive.