Lupieliving

living with lupus, day by day, moment by moment

When you are sick everyday, healing must happen everyday.  As someone with a chronic illness, I do not follow the linear path of sickness, recovery and healing.  Like Groundhog Day, I relive my illness every morning when I get up.  So how can you recover and heal when you are constantly sick? 

I have learned to declutter my daily life to make room for th practice of healing my body and mind.  When you examine your days, you will notice that there is an activity or two that is unnecessary for your well being.  Get rid of them and incorporate some routines that helps you heal.  While medicine is there to heal our disease, we need other tools to heal our mind and body that are being wrought by the disease(s).  Here are a few things I do:

  • Practice gratitude: It is tough when you are always sick to not fall into a place of darkness.  To get yourself out, or even better, to prevent yourself from going there, try to practice gratitude in whatever form works for you.  I have a hard time getting up in the morning because I feel so sick.  It used to make me so angry and sad to start the day like this, so I decided to start the morning calming down and thinking of three things I am grateful for. They can be the same three things, small things, big things…anything! This morning, I was grateful to hear the giggling of my son as he played a game with my husband; I was grateful that I did not vomit last night and I was grateful that I woke up before 11am! 
  • Be mindful: whether you engage in meditation or not, taking a moment to be mindful is great practice to become more centered.  To be in the moment, to understand what is happening around you and to be cognizant.  This practice gives me calmess over the day’s activities.
  • Engage in physical activity: Moving your body has many benefit.  And while it’s hard to move when you are suffering from fatigue, pain and sickness, if you can find a reason to move everyday, it will help you heal.  For me, I like to engage in restorative yoga, to walk and cook when I can.  Even stretching in bed is all I can manage sometimes but I find it helps.
  • Eat well-balanced meals: eating well balanced meals and choosing healthy options helps with your digestion and increases your energy.  Keeping your body as healthy as you can helps to ride out the next flare.
  • Cultivate a hobby: to spend some time doing something you love helps you feel a sense of achievement.  I used to love tennis and photography but I cannot do them anymore.  While I miss them, I now love to garden and cook whenever I can.  It helps take my mind off my illness and brings me lots of joy when I pick a fresh vegetable and make a dish my family and friends can enjoy.
  • Rest: always listen to your body’, when you at on the mend, rest is best! 
  • Laugh: laughter is the best medicine (free and without side effects) releasing all those wonderful endorphins! So try to find something to laugh about everyday.  My toddler son supplies me with endless moments of laughter, but sometimes I turn to an episode of Inside Amy Schumer for my fix.

What are some of the ways you practice healing?



This past weekend, I went to a local fair with my family.  While it was great fun, it was hard for me to keep up.  I was in my usual state of sickness, fatigue and pain.  I was starting to feel a bit down but then I remembered the last time I was at the same fair.  I was barely able to walk and I had to use my son’s stroller for assistance.  Never mind that I barely lasted a few minutes before I had to sit and rest.  Since I am sick all the time, it’s hard to realize that there has been any improvement at all.  You almost need a repeated event to know how your body is changing.  Like realizing your favorite jeans are too snug even though you didn’t know you were gaining weight. 

Taking a minute to appreciate that my body is allowing me to do more than before made my day at the fair much better.  Even though walking was painful, and I still had to rest a lot, it was still better than before and that was something to be grateful for.  

I try hard to listen to my body and be mindful of what it’s saying to me.  When I was first diagnosed with lupus, I ignored the whispers of my body.  This might have been okay when I wasn’t sick, but with a chronic illness, not listening could resukt in life threatening consequences.  I have to admit, I listen out of fear more than anything else.  It was nice, however, that this time, my body was whispering sweet hopeful tunes. 



Every symptom I list is met with new medicine.  If I’m lucky, one is prescribed but usually there are a few suggested, since despite being created in a lab, treatment with medicine is not an exact science.  And of course, there are more medication to treat the side effects of the original medications. 

Thomas Edison once wrote:

Nineteen hundred and three will bring great advances in surgery, in the study of bacteria, in the knowledge of the cause and prevention of disease. Medicine is played out. Every new discovery of bacteria shows us all the more convincingly that we have been wrong and that the million tons of stuff we have taken was all useless. The doctor of the future will give no medicine, but will instruct his patient in the care of the human frame, in diet and in the cause and prevention of disease. They may even discover the germ of old age. I don’t predict it, but it might be by the sacrifice of animal life human life could be prolonged. Surgery, diet, antiseptics — these three are the vital things of the future in preserving the health of humanity. There were never so many able, active minds at work on the problems of diseases as now, and all their discoveries are tending to the simple truth — that you can’t improve on nature. ““Wizard Edison” in The Newark Advocate (2 January 1903), p. 1 

It’s been over a century since Edison made this prediction and we have gone in reverse.  I don’t agree with everything Edison stated.  There has been impressive advancement in medicine and some diseases have been prevented and cured by these advancements.  But medicine now dominates treatment, and doctors are trained to treat the disease and not the patient. 

While doctors administer life saving treatment, they fall short in all other areas.  If the symptoms do not correlate to the lab reports, doctors do not know what to do.  There is little they could offer aside from offering you more pills.  Hence, the patient is left doing research on their own.  This is often a daunting task. 

I wish doctors are able to advise you on the whole treatment of your being, with medicine, nutrition and physical manipulation. 



My son is used to going to the beach during sunset.   It makes me sad that he has yet to enjoy a day on the beach with me but my lupus makes such sun exposure highly risky.  It is true, lupus is a family disease! 

I am one of two-third of the people with lupus who suffer from photosensitivity.  We experience an increase in lupus symptoms after being exposed to ultraviolet rays, either from the sun or from artificial light.  This means we develop a skin rash like hives on our body and/or a butterfly like rash on our face. Sunlight may also causes a lupus flare, resulting in fever, joint pain, or even organ inflammation.  

I remember the first summer after my diagnosis.  I wore shorts and a tank top, kind of my usual summer wear.  I broke out with rashes all over my body.  My best friend at the time was horrified at how awful it looked.  I was ashamed! But looks aside, I didn’t realize how much damage it was doing to my energy, joints and my organs.  To me, I learned that the sun is truly my kryptonite. 

In those earlier months, I mourned the loss of my freedom — to bask in the sun, to wear whatever I want and not be conscious of what times I can be out.  I quickly got over these laments when I realized just how much damage the sun can do to me.  Now, I avoid direct sunlight from 10am to 5pm.  I wear sunscreen.  I walk on shaded sidewalks. I wear protective clothing. I wear sunglasses and hats.  I take medications such as plaquenil, which is effective against rashes. 

It’s over 90 degrees in New York this week.  It’s time for me to turn into a vampire! 

Are you photosensitive? How do you protect yourself? 



  • How UV Radiation Affects Lupus

    Ultraviolet (UV) light is invisible radiation and contains three types: UVA, UVB, and UVC. Studies published in Autoimmunity Reviews have shown that UVB rays cause the most problems in lupus patients, but UVA radiation is also partly responsible. Exposure to sunlight may trigger the following symptoms:

    • lupus rash or lesions
    • joint pain
    • fatigue
    • internal organ swelling

My son is used to going to the beach during sunset.   It makes me sad that he has yet to enjoy a day on the beach with me but my lupus makes such sun exposure highly risky.  It is true, lupus is a family disease! 

I am one of two-third of the people with lupus who suffer from photosensitivity.  We experience an increase in lupus symptoms after being exposed to ultraviolet rays, either from the sun or from artificial light.  This means we develop a skin rash like hives on our body and/or a butterfly like rash on our face. Sunlight may also causes a lupus flare, resulting in fever, joint pain, or even organ inflammation.  

I remember the first summer after my diagnosis.  I wore shorts and a tank top, kind of my usual summer wear.  I broke out with rashes all over my body.  My best friend at the time was horrified at how awful it looked.  I was ashamed! But looks aside, I didn’t realize how much damage it was doing to my energy, joints and my organs.  To me, I learned that the sun is truly my kryptonite. 

In those earlier months, I mourned the loss of my freedom — to bask in the sun, to wear whatever I want and not be conscious of what times I can be out.  I quickly got over these laments when I realized just how much damage the sun can do to me.  Now, I avoid direct sunlight from 10am to 5pm.  I wear sunscreen.  I walk on shaded sidewalks. I wear protective clothing. I wear sunglasses and hats.  I take medications such as plaquenil, which is effective against rashes. 

It’s over 90 degrees in New York this week.  It’s time for me to turn into a vampire! 

Are you photosensitive? How do you protect yourself? 



  • How UV Radiation Affects Lupus

    Ultraviolet (UV) light is invisible radiation and contains three types: UVA, UVB, and UVC. Studies published in Autoimmunity Reviews have shown that UVB rays cause the most problems in lupus patients, but UVA radiation is also partly responsible. Exposure to sunlight may trigger the following symptoms:

    • lupus rash or lesions
    • joint pain
    • fatigue
    • internal organ swelling

Living with chronic illnesses means that my body is always in flux.  With the condition of my body never being constant, I am not on stable ground.  I always feel like I am walking on a tightrope, on a line that stretches long before me, with no end in sight.  

Walking on this tightrope, I am constantly striving for balance and am afraid of falling.  But factors small and big can affect my “stability”.  I can get sick, or fall ill, without warning and I rarely know what the causes are.  Did I turn my head the wrong way? Did I drink the water too fast? Did I not sleep enough? Or sleep too much? Did I not move enough? Or move too much? Did I eat too much? Or not eat enough? Is the medicine making me sick? Is the hair band too tight? Is it too hot? Are my clothes too tight? Did I wear my contacts too long?

These reasons seem both trivial and elusive. It’s always a guessing game, and since I don’t know what will endanger me and cause me to fall into a flare, I am always anxious.  I feel as though I am walking blindfolded.  My situation, that is to say my wellbeing, always seems so precarious. 

Unfortunately, without a cure, simply existing means I am never getting off my tightrope.  It is absolutely nerve wrecking and exhausting to try to maintain my balance all the time on this seemingly never ending rope. 



We all have our idiosyncrasies, and over time, we have found ways around it to make us appear more “normal” to others.  When you have a chronic illness (or two), you start to collect a number of mannerisms that might seem idiosyncratic to others.  These “odd” behaviors, however, are really coping mechanisms to help us live with our multitude of symptoms without having to constantly explain our illnesses.

For example, I have difficulty walking due to a number of reasons such as neuropathy causing numbness and prickling in my feet, lupus causing extreme fatigue, fibromyalgia causing widespread muscle pain, steroid induced muscle weakness, difficulty breathing, dizziness and nausea.  When I was able to move on from the bed, to a scooter, to a wheelchair and then to a walker, I tried to walk without aid.  This meant that I held onto my husband for support.  Or I would rest frequently.  I would use traffic lights as an excuse to take a breather.  I would also sit whenever I can. I also ride a lot of cabs or buses, even if it’s a short distance.  I usually avoid subways because the stairs and crowds are too much. The best was when I was able to use my son’s stroller as a walker!  But these are hidden things I do to cope with my difficulty with walking.  Some might seem odd to others.  Like why do I always take cabs? Why do I like to sit all the time? 

I have difficulty standing for a prolonged periods of time.  Sometimes this is more difficult than walking because in addition to all of the above, I also tend to have difficulty with my balance.  Hence, I still need a bench when I shower.  I need handle bars.  I still need help.  This means sleepovers are impossible.  Usually, family members have a hard time with this one.

Other things seem even more abnormal:

  • I need to always be in front or on the left of the person I’m talking to.  Because of my neuropathy, I can only turn my head to the right.  If I turn my head to the left, I immediately get naseaous and dizzy. 
  • I sweat easily (because of my thyroid issues) but my hands and feet are always cold (because of my Raynauds) 
  • I cannot eat a lot but I look 5 months pregnant because of my GI issues
  • I avoid alcohol because of my lupus, meds and GI issues
  • I cannot lie flat because of my neuropathy, I get very dizzy
  • I cannot wear heels because of my neuropathy
  • Som parts of me are numb (because of neuropathy) while other parts are so sensitive (because of fibromyalgia) that I yelp when I’m touched 
  • I’m extremely sensitive to smell, sound and light
  • I always walk on the side of the street that has shade since sunlight causes lupus flares
  • I chew weird because my mouth is usually covered in sores 

A lot of our behaviors, protective mechanisms to help us cope, seem even more odd because we don’t look sick.  We don’t look as though we suffer and need these additional aides, accommodation if you will.  But we do.  Sometimes when I’m caught without a seat on the bus and am hesitant to ask someone for a seat, I cry inside.  I have learned, however, to just try to wait it out or simply get off and try to wait for a less crowded bus or to hail a cab.

What are some of your needs, and how have you learned to cope with them?



No one wants to be a “survivor”.  After all, being a survivor means you have experienced something that really should have killed you, but didn’t.   One can be a survivor of an illness (e.g., cancer survivor), an event (e.g., survivor of building fire), a crime (e.g., survivor of an armed robbery), a massacre (e.g., Cambodian massacre), a war (e.g., soldier or civilian), a relationship (e.g., domestic violence), and so on. 

You cannot endure such hardships without much pain, and it is hard to come out of such experiences unscathed.  I have been a survivor of illnesses twice over, once when my lupus attacked my vital organs, and once when I was  diagnosed with thyroid cancer.  I survived.  And to a smaller scale, I fight to survive everyday dealing with my chronic illnesses. But I wish I wasn’t put in a situation where survival is my ceiling.  I wish I could just live.

I remember reading stories of survival and being in awe.  I was inspired.  But now, I can’t stand to read them because I just feel really sad for the person who had to endure such hardships.  I now understand.  They survived because they had to, and the cost of survival is usually very high.  

It’s still hard for me to discuss all the ways I had to learn to fight and survive.  How brutal those days were and how much I have lost, of myself and of my life.  There were many days when I lost hope.  I’m still standing, however, and that means something, I think.  

I don’t claim to be living well with my chronic illnesses.  In fact, I always seem two steps behind getting a handle on my disease activity.  I do, however, try to live a life, the best I can, despite my chronic illnesses.  After all, my illnesses will be with me my entire life, and I might as well learn to live with them.  Simply because, a life in bed is truly boring.  I should know, I was bed bound for over a year.  So how do we live a life despite our constant battle with debilitating symptoms, fatigue and pain?  Some days are not well, some days are bad and well, some days are just plain awful.  But to move forward, there are several things that I focus on:

  • Not getting sicker and losing my semi-independence: I don’t feel like I’m always getting better.  I think this is because even if I am getting better, I am certainly not well.  This could be frustrating and feel hopeless.  These are the moments when I console myself for not being sick as my sickest days.  It could always be worse! I try to find joy in not being so sick that I am completely dependent on a caregiver. I don’t take it for granted that I can shower on my own, no matter how long it takes.
  • Finding new ways to experience joy: my life was very different pre-lupus.  Not surprisingly, I led a very active and independent  life. I found joy in my work, partying, photography, playing sports, and vacationing.  When I became ill, I lamented over the loss of these enjoyments.  I am mostly homebound, limited in mobility and rely on others.  Overtime, however, I found joy in cooking, gardening, writing and the quiet company of others. 
  • Improving when I can: I don’t have the energy to live my life and spend all of my time thinking about my illness.  I mean, I would if I thought there was a cure, but as of now, there isn’t.  I do, however, try to improve myself physically and mentally daily by eating as well as I can, taking my medications, keeping up with my doctor appointments, moving when I can and being mindful. 
  • Be kind to yourself: I used to really beat myself over for being sick all the time.  I hated feeling like an inadequate mom, wife, daughter, sister, cousin, and friend.  But I stopped doing this, and it made a world of difference.  I do what I can, when I can.  I realized I am doing the best I can, even when I am resting in bed.  I am resting so that I can prevent my flares from becoming so bad that I become a big burden on my family.  And that might be more important than my participating in a social event.

I would love to see and know how you live your life with your chronic illness.  Tell me and when you can, tag #lifedeapitechronicillness so you can share with others. 



So my evening project was to break down this whole watermelon.  It’s a project because I haven’t tackled such an activity since I got sick.  It seems like such a simple thing but to me, it was a big undertaking.  First, there is the fatigue.  I have been thinking about cutting this watermelon for about two weeks now.  Most of the time, I think about things I want to do but don’t have the energy to act on it.  Secondly, there are a slew of symptoms that I must make sure doesn’t take precedence.  It’s usually a small window.  Lastly, the muscle and joint pains make it hard for me to undertake tasks such as cutting up this watermelon.  Many times, even a mango is a challenge! 

I thought it was about time that I did it.  It took me a long time and I only got through half of the melon but I did it!!! I was so proud.  Another hurdle crossed. First whole watermelon is four years!

The problem, however, is always assessing the damage.  It’s like I can start putting a grade on activities based on the cost benefit ratio of illness to joy.  The cost to me was that I was incredibly tired and my fingers and wrist still aches (after a few hours) from the “strenuous” activity.  As much as I had fun, I will probably chalk this up to something I must ask others to do for me, or buy pre-cut. 

I constantly have to play this kind of prioritization game, from something as mundane as fruit cutting to making life choices.

The big question I have been grappling with is whether I should have a second child.  Whether I can is something I can find out only after I try it.  But whether I should….? I’m doing a cost-benefit analysis all the time.  Everyone I know – friends, family and doctors – advises me that it a bad idea.  And I know the risk to my health and to my existing family.  The cost would be very high.  The benefits, unknown.  I do know that if it wasn’t for my health, I certainly would have another child.  Of course, health is a huge factor.  I have all but given up on the idea but I can’t stop thinking about it. It seems to be the one thing I can’t get over.