living with lupus, day by day, moment by moment

When I was a little girl, my birthday wishes were very unrealistic.  Think unicorns, time travel, x-ray vision, and such.  As I grew up, it became more realistic and wishes became more like goals.  Yet, as I face turning 38 tomorrow, I find myself dreaming once again.  I wish that I will wake up and be magically cured.  To not be sick anymore.  To feel normal once again. 

I became sick four and a half years ago.  Everyday I have been sick, fatigued and in pain.  

Every. Single. Day. 

I no longer know what it feels like to be normal.  What would it be like to shed my disease ridden body and spend a day without being constantly reminded of my limitations? It would be so glorious.  It would feel so free! 

I used to think that such a day might come.  But  now that day seems just as unrealistic as being able to fly. I might one day feel better than I am now, but I will never be whole again.  I’m learning to be ok with that, but on days like these, I can’t help but indulge in my dreams.  What would I do tomorrow if I wasn’t sick?  Perhaps not too much more than what I might end up doing.  But ah, to do them without pain.  To do them without being sick.  To have the energy to enjoy them.  That’s what might be different. 

Imagine, and I no longer can, waking up feeling refreshed! To not feel like my body is radiating with pain.  To not have a pounding headache.  To get out of bed, without feeling nauseous and dizzy. To be present because my pain is not taking most of my brain.  To be able to enjoy my day instead of thinking how nice it would be to rest.  To not feel the pain when I sit or walk because my nerve damage is sending excruciating pain throughout my body.  To be able to eat without feeling nauseous.  To not worry about where the nearest bathroom is.  To run around with my son. To not worry whether I can last it through the day.  To be able to go to sleep at the end of th day. 

That would be my birthday wish this year. 

Story 1:  Sharing coffee with a fellow chronically ill friend, I said that I look forward to growing old in the city.  I can imagine spending the days catching a matinee show at Lincoln Center with my husband, like those old couples I see walking around.  To which my friend responded how optimistic I am.  He could not see himself growing old. 

—- 👩👵 ?

No one can predict how we will die.  Our hope is to live happily, grow old gently and go out peacefully.  But life has many plans for us and we just never know.  We can die of a sudden freak accident, from a terminal illness or, well, from many things.  Of course, being chronically ill, I am not immune from such causes, and in fact can aid some of those causes from visiting me earlier than would be on a normal person’s  timeline.  The high risk that my illnesses put me in (e.g., thanks lupus for the additional heart risk), as well as the added risk from all the potent drugs I must take, mortality no longer becomes an exercise in the hypothetical.   


Story 2: getting ready for my mom’s 70th birthday dinner with my 4 year old son, he asks me “Mom, when you get old, you die, right?” I assume he was talking about his grandma and how sad he will be if she was gone.  I explained that none of us live forever but we are here now, and it matters how we live while we are here.  To not take it for granted.

And while thoughts of my health risk and mortality keeps me awake at night, so equally does thoughts of how my pain will only end when I am no longer living.  I quiet both of these thoughts with a reminder that my end is unknown to me.  And that I will continue to make the most of it.

When I initially became sick, there were many people who supported me.  But when I became ill — and stayed ill for a long time — I suddenly found myself very much alone.  The devastating loneliness crushed me as much as my illness did.

I remember that at the height of my illness, I found myself in so much pain that I had a complete breakdown and cried out wondering where everyone was…?!?!  I was too sick to maintain communications, incapable of reaching out or even give updates.  But I had to wonder what everyone else’s reasons were for not finding out what was going on with me? I was near death, not for a day, or a week, but for months.  MONTHS! During these months, the silence was deafening. 

Life halted for me in 2010 but everyone’s’ life was going on, with my absence being just a minor hiccup.  I spent many days questioning what happened and wondering what went wrong.  I mainly engaged in these painful exercises to try to regain my faith in relationships.  I found that no one answer fits. 

With some, I was just never that close to and our relationship was that of a mere acquaintance.  Not much harm there.  I could not possibly expect anything from such relationships.  And yet, some of the kindest gestures came from those I wasn’t very close to.  I attribute most of that to empathy. 

With some, I was very close to and with them, I expected more.  But perhaps, I expected too much.  My illness went beyond bringing flowers; it demanded real care in terms of pushing my wheelchair or feeding me bedside. 

So what happened to the friends, co-workers, relatives with whom I spent many days and many years with? Maybe it was too much.  Maybe they cared too much.  Maybe they felt helpless.  Maybe they didn’t know what to say.  Maybe it made them uncomfortable.  Maybe they just didn’t care enough.  Maybe they were too busy with their life.  Maybe . . . maybe . . . I just don’t know. 

Recovery takes a long time.  For me, I will never be well.  As long as I am, I will always be sick.  Even now, there are many who do not know what to say to me.  Some don’t say anything at all.  I honestly don’t know what I would want to hear.  I know that with the people who are able to break through, it’s rarely what they say but how they say what they say and how they listen to me.  They ask me questions, listen with genuine concern and respond in ways that makes me feel heard. It doesn’t take much I think.  In the end, it’s just love and empathy. 

My son is four years old and while he doesn’t understand that his mom is always sick; he does seem to understand that there are many activities that I cannot do.   Fortunately, he also seems to understand that there are certain things I can engage in and joyfully does them with me.  

If you are a mom with a chronic illness, or if you have been sick as a mom, you know how difficult it is to spend time with a child when the illness is demanding your attention.  The optimal way to handle this is to have help until you are better.  But sometimes is it not always possible to arrange for care, or in the case of a chronically ill mom, there is no getting better.

So what can you do when there are dual demands on your body?  Here are some activities that I have learned are great options for me and my son:

  1. Arts & Crafts: when I’m feeling awful, I put out markers and either a sketch pad or a dry erase board and let him draw whatever he wants.  When he gets a little bored, I will throw some ideas at him and this will usually get him going longer.  Depending on his passion at the time, this could get him going for awhile.  On days when I’m feeling a little better,  we will do more interactive arts and crafts involving play dough or cutting/glueing. I also have a set of craft activities as backup.
  2. Play dates: play dates with friends are great since he will be preoccupied for a few hours.    I would usually have the play date at my or a friend’s house, or in an enclosed play area.  Usually museums or big playgrounds are impossible for me.  I would also set up a play date with a caregiver (friend or nanny) who is aware of my condition and that I feel comfortable with. 
  3. Baking: this involves a bit more energy but it is a great activity if your child likes it (and surprisingly, most kids do).  You can prepare everything sitting down and take it slow with measuring out the ingredients.  There is very little standing time and you can pop it in the oven and rest.  I try sticking with very simple, foolproof recipes.  When done, you can enjoy your creation with your kid — double plus!
  4. Water play: this is a great way to shoot two birds with one stone.  I fill the tub with water and bunch of toys and let him play for as long as he wants.  This gives me time to really rest. Then when he is ready, it’s a quick soap, rinse and dry.  We usually both have some downtime on the couch or on the bed while he dries.  Sometimes when I am in pain but have the energy, I’ll just join him in the water.  Fun for all. 
  5. Movies:  when I absolutely cannot move or feel ill, I turn to movies.  I have a few favorites that he loves and know will keep him occupied.  We pop some popcorn, and cuddle up on the couch.  It’s a special treat for him and a much needed respite for me. 
  6. Interactive electronic games:  in short, IPads. I know screen time should be limited but it’s a life saver for someone like me.  As much as I like to play a game of Sorry with him, I don’t have the energy to do so on most days.  Having him play games on his iPad is a good way to have him engaged when I can’t participate 100%.  For example, his favorite game of Snakes and Ladders moves the characters for me after I roll the electronic dice.  Just that shortcut is enough to save me!
  7. Storytime: I play this game when I need to lie down and rest.  I usually lay down with him in bed and we tell stories, sometimes made up and sometimes a retelling of a book we read. This usually involves minimal thinking and energy on my part.  Ideally, he’ll nap with me but if not, we got some downtime, resting in bed. 

Depending on your level of energy and illness, you can engage in a more involved or a less involved versions of these activities.  I have yet to have had a full day that I can spend fully engaged with my son.  But I am glad to have found some ways to meaningly spend time with him! 

What are some things you like to do with your kid(s)?

“But he said you looked fine.” 

 May is lupus month and I strongly feel that awareness of this disease is needed. Until I was diagnosed, I have never heard of lupus or what an autoimmune disease was. Until I was hospitalized I did not really understand lupus. And it was not until lupus took away the life I knew, the friends and family I knew, and threatened to take me away, that I finally sat down and started to learn about the disease. Even so, it is one hard disease to understand. I mean, what does “Lupus attacked your central nervous system” translate to in one’s everyday life? How can one bring awareness to all the physically debilitating effects of the disease? And what will awareness do, anyways? For me, it will prevent people from saying “You look great, hang in there.” Innocuous statements like these anger lupies because it is laden with ignorance that only awareness could shine light on. 

 In 2011, I was hospitalized after being very sick for a very long time. Concerned friends visited with their well wishes. One of my friends could not come because she was sick herself and instead, sent her boyfriend, who happened to be in the medical field and knew “all about lupus.” Apparently, he reported to her that I looked fine. I still think about that.

I think about how when he visited, I must have looked fine. I was, however, not fine. I was not fine because before his visit, I had been deliriously ill and comatose for a few days during the hospitalization. I was not fine because during his visit, at the time that I was conversing and even laughing, I was feeling such intense chest pain that I could not even lie down for any relief. I was suffering both from high fever and chills that I felt like I was burning naked on top of a freezing iceberg in Antartica. The headache was so intense that I started to think a drill through my head might relieve the pressure. I was feeling so dizzy and lightheaded that any movement would make me feel faint. The nausea was so bad that I felt like vomiting the entire time. My eyes were bulging and the lights felt too bright. My ears were ringing so hard that the conversations felt like people were yelling. I was hungry because I have been unable to eat since my entire mouth was covered with sores, my taste buds were shot, my teeth and gums were sensitive and the skin inside my mouth felt like it was missing a layer. My entire body felt like a bunch of guys were continuously beating me up and the painkiller I took 10 minutes ago seemed like it was already wearing off. My stomach was hurting, my digestive system was out of whack and I was suffering from heartburn, gas and diarrhea. I was numb from the waist down and the only feeling I had down there were feelings of pain.

But I looked just fine. 

 I hope that with awareness, people will understand that a lupie could be sitting across from you, looking fine but feeling sicker than one could imagine. If you have a lupie in your life, the next time you see him/her, instead of saying “You look so great!” try asking “How is the pain today?”

What is wrong with doctors that they think it is ok to just throw out a diagnoses, without so much as an explanation?

When I was first diagnosed with lupus five years ago, my rheumatologist was scant on detail and my primary doctor only added to the confusion by impatiently assuring me “you won’t die!” (Of course this is not true. In fact, you CAN die from lupus).

So when I eagerly awaited an analyses of my many symptoms from my GI doctor on Wednesday, and was summarily told “it’s functional” — I was left with more questions than answers.  Many questions that went unanswered, such as:

“What does it mean functional?”

“Why do I always look 5 month pregnant?”

“Why am I vomiting all the time?”

“Why am I full all the time?”

“What’s causing all the nausea?”

“What should I do?”

“Should I avoid certain foods?”

“Will exercise help?”

“What causes it?”

And so on.  I was told, with much exasperation — “you are asking me to explain the unexplainable…!”

What? Why don’t you freakin try?!?! You are a doctor?

So after leaving his office, much befuddled, I turned to the Internet and googled “functional GI dis order” as it was told to me.  I found out that there was such a thing known as “FGID” and that it was not THAT difficult to define after all.

According to the International Foundation for Functional Gastrointestinal Disorder  (www. 

Gastrointestinal (GI) functional and motility disorders


How a functional and motility disorders are defined

Functional disorder or disease occurs when the main abnormality is the way the body works. In the doctor’s office, no structural or biochemical cause is seen.

Gastrointestinal motility is defined by the movements of the digestive system, and the transit of the contents within it.

Functional GI and motility disorders generally cannot be diagnosed in a traditional way. No inflammatory, infectious, or structural abnormality can be seen by commonly used examination, x-ray, or laboratory test.

Problems occur when nerves or muscles in any portion of the digestive tract do not function in a  coordinated fashion, or when the sensitivity of the nerves of the intestines or the way in which the brain controls some of these functions is impaired. Symptoms commonly include…

  • pain
  • heartburn
  • abdominal distension
  • nausea
  • vomiting
  • bloating
  • constipation
  • diarrhea

It’s good to have some sort of “diagnosis” – I guess.  At least there is research I can do but I am not very hopeful.  Here is another amorphous illness that has no definable cause or cure.  Relief to all these symptoms that I have been suffering from the last five years do not seem apparent. 

Hope is not something I have at the moment. 

A Useful Modality for Treating Muscle Pain

My husband asks me from time to time, what is it like, the muscle pain? And every time he asks, I try to use a new metaphor.  Plain words never seem descriptive enough to explain what my widespread muscle pain feels like.  So I have said stuff like —

“It’s as if my body is burning, just below the skin, all over.”

“I feel like a bunch of people are kicking and punching me.”

“Kind of like there is a hot roller cementing me.”

“A permanent shin splint.”

“Every step feels like I’m walking on broken glass.”

“My leg feels like wood with fire ants crawling all over it.”

“Charly horse! All over my body.”

And so on and so forth.

So what do we do with these types of debilitating, widespread muscle pain?

I do take medication such as Cymbalta and gabapentin, but they have limited effectiveness.  I found painkillers really do not help me since it’s not localized pain, also, I would be taking it 24/7, which would not be good.  So I do other things to help with my muscle pain.  I take very hot showers every morning.  I go for massages.  I use heating pads.

And when I was no longer bed bound, I tried to do some physical therapy but it did not help my pain.  But last fall, I tried restorative yoga and I found it helped relieve my pain immensely.  I go once a week to my local studio, where I have learned a great deal from my favorite yogini there.  I am able to use some of these poses at home during the rest of the week to ease the pain.

in restorative yoga, props are used to support the body which allows you to hold the pose longer, and help open the body through passive stretching.  The props generally used are blocks, bolsters and blankets.  These help eliminate straining when doing prolonged seated and laying positions (often 10-15 minutes for each pose).  Even while supported, you will definitely feel the gentle stretch and that is what quiets the muscle pain.  These classes are also very relaxing and meditative.  After each session, I come out feeling completely restored in mind and body.

Long gone are days when I can do a downward dog or hold the plank position with ease.  But I am glad I was able to find a way to continue practicing yoga that helps me physically and mentally.  If you suffer from muscle pain, whether from lupus, fibromyalgia, neuropathy, or from other illnesses, I highly recommend looking into restorative yoga, either at your favorite yoga studio or at home.

My favorite yogini teaching me the lizard on the rock pose, and showing me how to relax

Feeling “restored” after learning to relax from my favorite yogini — here she’s teaching me the lizard on the rock pose.

Without a proper diagnosis, it is impossible to get on the right road to recovery.  But when you have an autoimmune disease, or multiple overlapping diseases like me, it becomes very tricky.  I have, among others, lupus, thyroidism and fibromyalgia.  All three diseases say I will experience debilitating fatigue.  So can I alleviate the fatigue by taking more immunosuppressants or steroids (to treat lupus), or more cymbalta or gabapentin (to treat fibromyalgia) or more thyroid medicine? Or could it be that the coreg, taken for my heart, is zapping my energy? The answer from my doctors? — “Well, it’s hard to say. It could be one or all.  It’s not an exact science but more of a trial an error….”


But isn’t medicine, a science? Shouldn’t it be exact? Shouldn’t all the tests result in some telling news? Aren’t there research papers and clinical trials to extract useful information from? Don’t the milligram measurements of the drug dosage mean something?

“But everyone is different.”

This is what’s so frustrating.  To experience so many debilitating symptoms and to travel down so many paths with various specialists, only to end up with murky diagnosis and even a more hopeless plan of attack. 

I have worked with a neurologist for my dizziness, vertigo, numbness, tingling, pins and needles.  I feel like I am walking on glass, like my leg is wood and I have fire ants crawling all over it. I lost sensation throughout my body, especially below the waist.  My tastebuds are shot.  So I had various tests, including MRIs, only to find out there really wasn’t much to be done.  So I suffer.

I went through similar journeys with my cardiologist, pulmonologist, and physiatrist.  Currently, I am meeting with a gastroenterologist to find out why I have so many GI issues — vomiting, nausea, dizziness, headache, diarrhea, constipation, abdominal pain, indigestion, gas, heartburn, bloating, and urgency.  So far, I have gone through an endoscopy and a colonoscopy, and no answers.  While we will keep exploring, the answers could be that these symptoms could be caused by lupus; another illness such as gastroparesis; as a side effect of a medication I’m taking or all of the above.  None of these answers seem to point me towards relief. 

When I was diagnosed with thyroid cancer, I went to my ENT surgeon and got a thyroidectomy.  When there were some lingering cancer cells, I got radiation.  Problem detected.  Problem solved. Done.  Even though it was a hard time for me, it was also nice to have an illness that could be identified and dealt with.  With lupus and other chronic illnesses, I have it forever and it’s almost to impossible to manage. 

I love traveling.  Spending time away from the stresses of life, immersing in another culture and experiencing new things — what’s not to love? Traveling, however, became nearly impossible for awhile because my lupus was very active.  I was also a new mom with a newborn.  These two factors worked against indulging in travels.  But as my son became older and as I learned to “live” with all of my illnesses, I slowly started getting back into traveling.  It is still extremely challenging and here are a few things I have learned along the way: 

  1. You must choose a traveling companion who understands your illness: It used to not matter if I traveled alone, with a friend or with family.  For business, for a girls trip or for a family gathering, depending on the reason for the travel, my companions changed.  And that was a great thing.  It offered me a variety of travel opportunities and I loved them all.  With lupus, however, it became very important that I travel with someone who could potentially become a caregiver.  Because of my limitations and the unpredictability of my disease, I cannot afford to travel with anyone who doesn’t understand my illness.  I cannot be that carefree, and I dare not travel alone.  While I can be fine one minute, I can be hurled over a toilet without any triggers, another minut.  I need someone there who will know what to do when that happens.
  2. You need to choose an appropriate travel location: Based on how active your lupus is, you are the best one to judge what level of activity you can undertake.  Some lupies can go skiing, while others need a place where motorized scooter can easily be utilized.  In the earlier days of my illnesses, I was completely bedridden and I could only travel via car and a motorized scooter.  Now, I have tried flying but I still need assistance and cannot engage in active vacations.  While I would love to go on ski trips, hiking trips or even trips to other cities, it would just be impossible for me. 
  3. It is beneficial to discuss your travel plans with you doctor: Hopefully you have a close relationship with a doctor.  Mine is with my rheumatologist and I would not feel comfortable traveling unless I discussed my plans with her, especially if I was thinking of going abroad.  Talking with your doctor wil ensure that you will take any precautions necessary (e.g., vaccinations?) and it might also help you locate a local hospital, just in case.
  4. You should pack all your essentials: Before all else, make sure you have packed all your medication.  It’s no fun trying to secure your meds in another state or country, and sometimes, it might not even be possible.  Try to keep a list of your medication with you at all times if you can.  Other things you should pack are things that help you through the day.  For example, I always pack Ricola cough drops. They help me through nausea and I am never without them.  If you are flying, it’s also a good idea to make sure you carry these essentials with you on board. 
  5. Do not hesitate to take advantage of the necessary assistance:  Just because you don’t look sick, doesn’t mean that you don’t deserve some of the assistance provided to those who do look visibly in need.  If you are taking a road trip and need to park at a handicapped station, you should get a pass before hitting the road.  For me, flying for the first time was a real challenge, and it still is.  The airport is very big and I would not be able to navigate it on foot.  Almost all airlines provide for wheelchair assistance.  I was a little embarrassed at first but I really needed it.  Also, most allow you access to priority boarding, which helps immensely. 
  6. It is essential to schedule in breaks: It’s hard to stop to rest when you are on vacation and your travel companion(s) are counting on you.  But before you get really sick, it is necessary to schedule in as many breaks as you can.  You don’t want to miss out on a bulk of your vacation because you did too much the first day. 
  7. You need to allot enough time for your activities: It takes me 3 times longer to do something that a healthy person can do.  When my family went to Disney World, I was in my 2 year olds schedule.  Between all the naps/rest and slow walking, it took us 3 days to do one Magic Kingdom.  The pace worked for us. 
  8. Try to enjoy your vacation: When you are in pain, fatigued and sick, it’s really hard to enjoy anything.  Let alone a fun and packed vacation.  This gets me down but I try to be in a place of gratitude and enjoy my vacation as much as I can.  This might mean restraining from more active parts of the day, resting more and avoiding certain times of the day.  Nevertheless, I try my hardest to find enjoyment in it.  Otherwise, what’s the point? 
  9. Give yourself enough time to rest before and after your trip: It used to be that I could work before and after my trip.  This is no longer the case.  Notwithstanding the fact that I am no longer able to work, I have learned to really take it easy before and after my trips.  While this does not ensure me a better outcome, not resting definitely means I will be really sick. 
  10. At the end, assess your vacation:  Everytime I travel, I learn something new about me and my condition.  I learn what I can endure, what’s enjoyable and what I will want to experience again.  I also take note of what helped and what didn’t help me. I cannot take any experiences for granted since my body does not give me much room for failure.  It cannot cushion mistakes as a healthy body can.  And since my body is my best teacher, I try to listen and learn. 

I am always learning and would love to know what tips you have for making successful travels with lupus, and/or other chronic illnesses.

It felt like I was thrown into an episode of the Twilight Zone.  The story would have been about long, endless, sleepless nights.  My 24 hours were broken into 2 hour sets.  There were no mornings, afternoons or nights.  There were no days.  There were only feeding, changing, bathing, and soothing our newborn.

Our son was less than 36 weeks when we brought him home.  Harry was still 0 years old!  Taking care of a newborn is an incredibly difficult task.  Taking care of a preemie took extra measures – because premature baby bodies are not fully mature, many systems such as heat regulatory, respiratory and digestive aren’t fully operative.  Not surprisingly, they are susceptible to more complications than a full term baby.  The worrying did not stop when we left the NICU.  Our chief concern was maintaining Harry’s body temperature and weight.  Because of his small size and greater skin surface in relation to fat, he had difficulty keeping comfortable without help.  Harry also had  to expend many calories to keep warm, interfering with his weight gain.  

We stressed about keeping Harry warm, while being careful not to overheat the room.  We were also careful about sterilization since  preterm babies are more susceptible to infection.  Harry needed to be fed frequently, even if it meant spending most of the time nursing and bottle feeding.  Preemies have very small stomachs so Harry needed to be fed every two hours.  He was also not able to suckle sufficiently or effectively so he took longer, as long as an hour to drink his fill.  He needed multivitamins.  He needed to be weighed frequently.  It was a busy time and aside from doctor visits, we hardly left the apartment. 

People told us what it might be like, and we did our reading of course, but as with anything, you don’t know what it’s really like until you experience it.  While we had some help, because my husband was still on paternity leave, we decided do most of it ourselves the first month.  It was really hard but after being in the NICU for so long, surrounded by so many people, we just wanted to be alone with our baby.  Despite being incredibly sleep deprived and exhausted, we really relished this time.

All this caregiving was inevitably taking a heavy toll on my body and lighting the lupus inside me, but I was rather oblivious to the symptoms. If I was more familiar with lupus and knew my body more, I would have been more vigilant about taking care of my body as well as that of my baby.  Unfortunately, I was a new mom, as well as a new lupie.

O months


Back Camera


O monthes