Category Archives: Lupus

Lupus & Me: Get Serious

Chronic fatigue.  I was embarrassed at this newest addition to a growing list of diagnosis’.  I liked the ones that made me sound like I might be an off duty nurse.  I’d rattle them off and even spell them if the pharmacist or doctor looked puzzled.  Systemic lupus erythematosus is often reduced down to just lupus. You could have systemic or discoid lupus.  I had both.  Discoid gave you lots of undeniable and very visible symptoms, mostly on the face.  Aside from your skin, your other organs were usually spared from attack.  I’ve always been an over achiever. As a young girl, I denied ever being the competitive type.  It was mostly a protective measure for my ego in  case I lost at whatever it was I had set out to do.  Why should this disease be any different?  I didn’t become infected with this disease.  It didn’t find its way into my kidneys and brain on a Trojan horse.  It was me.  The disease sprang from me.  It was part of my DNA.  It was just following orders, my orders.  Go big or go home.

I came to recognize symptoms in their early stage.  This knowledge, more of sixth sense really, came after several years of ignoring signals that something was wrong.  The problem was that lab results didn’t usually pick up my red alert.  Visits to the  Urgent Care explaining to the doctor that the sores in my nose and mouth or hives that sprang up the size of small grapes were not just uncomfortable.  I could handle discomfort just fine.  I would ask them to call one of the doctors on my list–  the standard treatment was high dose of prednisone tapered down over a period of 2 weeks.  Lab tests would be taken that day and again at the end of the steroid treatment.   The team of specialists I saw knew my case and admitted that mine was especially complex.  I was scared and pleased at the same time.  If I was going to be sick, it better be good.  And by good I meant, good like go big or go home kind of good.  You can understand why chronic fatigue was left off the list on first visits to a new doctor.  The doctor would read through the list.  When he would ask if there was anything he missed, I would mumble “chronic fatigue.”  He’d nod and when I saw that he and so many other doctors wouldn’t even write it down, I eventually stopped mentioning it all together.  It was wishy washy.  It took credibility away from the very legitimate condition that had introduced itself into my world.

Over time, the symptoms of chronic fatigue would begin to demand respect.  I know, chronically fatigued?  I’d joke that I’m also chronically averse to exercise and food that is good for me.  I could go on.  Chronic fatigue knocked me off my feet. It seems like this should take care of itself with a few good nights sleep.  You could sleep for the major part of three days and feel the same.  I continued to work most of the time since being diagnosed with lupus. If I stayed home, I felt tired.  If I worked I felt tired.  At least at work, I would be dressed up and could pretend to be the version of me I so wished to be.  If I stayed home I felt guilty–  lazy, even.

The concept of time took on a different meaning.  I don’t wear a watch or have a clock in my office. Time is relative.  An alarm beeps to let me know I have an appointment or meeting in the next 30 minutes. Aside from being on time for something, I stopped watching the clock.  A good day no longer meant a day.  That was too long.  I measured life and success in even smaller increments of time—I had to.  Instead of getting up and knowing I would have a great day, I accepted that if I could sit up without assistance, I was better than yesterday.  If I could sit up yesterday and today I couldn’t, then I told myself, I was better off than someone was yesterday.  I cried.  I gave up.  I had been defeated by the unserious sounding condition of chronic fatigue.  To be continued…..

❤ Estela

Introductions

aEC Estela Latina Blogger

Later today, the first of what I hope to be a great many years of official introductions to my favorite bloggers and artists.

Seeing the 2 year anniversary mark for this blog took me back to the reason I started blogging…guess what?   It is completely different from the reason I continue to blog.

Starting today, I will choose one fellow blogger or artist to spotlight on my blog.  I was introduced into a supportive and caring world of strangers on that first day on WordPress– not what I expected after hearing all of the horror stories of trolls and bullies that haunt too many pages.

I keep blogging because of you my friends.  I’m captivated by your stories and warmth.

Stay tuned.

Estela

Lupus & Me: Mirror Mirror

Moon face.  It’s an incredible change to your face that seems to happen overnight when you are pumped full of things to suppress your own immune system. My chipmunk cheeks are one of the final reminders that just a few weeks ago I was in the hospital.  When I woke up that day, I felt fine.  It was lupus again with a reminder that fine was only skin deep.  Not even skin deep if I made the mistake of letting the sun rest on any part of my face for too long.

The last several months were peppered with visits to the emergency room and follow up visits–  if I didn’t have a diagnosis of lupus already, it would have been understandable if my family questioned my sanity.  My fingers would turn a scary shade of grape for a while.  My feet began to play dead, well that’s what it felt like.  They were cold which was no problem, right?  I love fuzzy socks.  A few days before being admitted to the hospital I grabbed the brush on the dresser near my bed.  My legs stretched out still on the bed as I sat up and scooted back against the headboard.  I leaned forward and tapped the brush handle against my ankle bone.  I could see it make contact but nothing, I could feel nothing.  One foot playing dead and the other unsure of it’s next move.  This was new but as unwelcome as the old ways lupus usually surfaced.

Symptoms like arthritis are easy to describe and not too hard to confirm.  Even without tests, you can feel swelling of joints aflame. Weird things like a bulging hot fluid bubble hanging off your elbow are quickly identified. This lady on the bus asked if she could feel it.  She seemed harmless so I agreed.  “Bursitis,” she said, “it’s called bursitis and it hurts like hell doesn’t it?” There is comfort sometimes in having a name, something to call what keeps you up at night.  My sleep wasn’t chased away by the unknown anymore, it stopped needing a reason to escape me a long time ago.  More than 10 years ago I fell into a hole.  It was dark day after dark day, mostly because no one close to me knew what was wrong.  Doctors are just people and sometimes a case becomes too much so they give you a referral and wish you the best.  They don’t want to see you again and it’s nothing personal.  When systemic lupus attacks the brain it can resemble anything from a forgetfulness, demonic attack to straight up insanity .  They are called neuropsychiatric disorders and can leave as quickly as they start.  Most of the time it doesn’t come on full force.  It can progress slowly over weeks and months.  In some cases, like mine, it was a rapid descent that took over in a matter of days.  It would only take a few days to emerge once the steroids and chemotherapy hit my system.  I think we all have at least one experience in life that becomes more than a collection of memories.  You tell your life story and there is a before and after that time– sometimes because it’s easier to reference it but stick to talking about every other thing around it.  It’s not a bad strategy and in my case might have worked–  maybe lupus was offended I had started referring to it as , “….the time I got really sick.”

I’ve never really seen the spot where the needle entered my spine.  The doctors were searching for an answer to explain the sudden onset of behavior that began as peculiar and peaked at frightening.  The spinal tap ruled out certain bacteria and some types of infection.  My fingers twitched and locked in the most unnatural way.  The television in my room crashed to the floor after I disconnected it from the wall, then from the satellite dish and DVD player.  Anything to make things stop, things I knew were only possible if I was crazy.  A commercial that started out harmless fooled me and was the last thing I remember before pulling the tv this way and that way trying to shut it up.  My husband and mother ran to the door and since the doorknob had been removed earlier that week, the chair I put in front of it was no good.  I thought I was protecting them from whatever demons lived in my room and followed me everywhere except to the mailbox.  I took to checking the neighbors mailboxes at all hours to get relief from talking shadows and something I am certain was the devil.  Even though all of this is crammed into, “…the time I got really sick,” talking around it really only made me question if it all really happened.  Everyone gets sick, right? Not everyone ends up in a padded room, literally in a padded room.  It was a hard return to normal last time.  After, I remember being afraid to smile too much or be too happy–  what if people thought I was acting weird.  The little square of emotions I decided were safe and didn’t make me stand out became my normal for a time that lasted much longer than the prescriptions and weekly treatments.  That was last time.

I’m sure if I opened up that yellow envelope holding medical records from the months surrounding what the doctors called a flare, I would find answers.  Answers and reassurances that I wasn’t crazy.  That envelope has sat in the same box for a long time unopened–  I think the part I know is enough about the last time.  Flares are for the road, to warn people.  I always thought they looked like dynamite and marveled at the magic when I saw the light crack through the red papery skin of the dynamite stick.  The time leading up to my flare that changed my life was painful ignorance.  After the days searching a mirror for a glimpse of me, it was still painful.  Losing control is like a falling feeling and I am not the kind of person that likes either.

I can’t get rid of lupus but it can get rid of me.  It’s as much a part of me as the veins and synapses that translate forgotten memory to whisper to sigh.  There is no magic pill to kill lupus.  There is no test except the one that brings you within an inch of death sometimes and unmasks what you wish remained unseen.

I kept the news that I was in the hospital quiet this time. In a few days, it will be the 1 month mark.  The day I woke up and went to quick doctor’s appointment during an early lunch from work and found myself in a hospital. Honestly, I don’t know why I asked the few people who knew to give me space.  Maybe because sometimes I think it’s harder for people I care about.  Maybe because it makes it easier for me to tell myself a nice lie I need once in a while.  There isn’t anything they can do.  Their words and feelings conveyed to me over a lifetime are enough to sustain me through darkest times.  I live each day since the time I got sick in a way I can only hope confirms that for them.  That’s one thing about coming to terms with your own mortality early in life, you lose whatever it is that keeps us from telling people we love them and it changes your entire life. It did mine anyways.  I’m still technically in the flare and my purse sounds like a rattlesnake with all the medicine bottles. I went back to work and each time I look in the mirror, I see a little more of me each day.

I decided for isolation this time.  It was different than the other times lupus tried to take over.  The first few days, especially that first one, I was in denial.  I felt fine, I had just went to the doctor for a regular visit and somehow mistakes must have been made that landed me in an emergency room with a bag of infusion magic chemo on standby.  I decided to take a picture of the changes– real pictures.  I cropped them here and there but for the most part, they are unedited.  This was a particularly hard day of acceptance.  They are hard to look at and I thought long and hard about posting them with the story.  It captured something my words can’t.  Take what you can from it. This time was different.  Don’t let anything stop you grasshopper.  I’m not.

crybaby

Temporary Insanity

I was convinced someone was listening to all of my phone calls and my hair loss was a result of poisoned water.  I had gone insane, or so it seemed.  When I finally pulled out of it, I burned all my notebooks. I stopped writing. I was worried if people read my notes they would think I was crazy….I kept the ideas in my head where they were safe from any questioning. I had just been through a rare lupus attack.  Lupus cerebritis, a swelling of the brain caused by almost undetectable inflammation. The truth is I was the one more worried than anyone else about seeming crazy at the time. Everyone else who had been with me through that nightmare of a time understood that there was a medical reason I had begun acting strange that had nothing to do with mental health– it was a reaction to my brain being under fierce attack by my own immune system. That’s what lupus is, a disease born of your own immune system that becomes corrupted. It can’t tell the difference between things like your organs and something it really is supposed to fight to keep you healthy.

I never thought lupus would dare mess with my brain. I was wrong.  I began to hear things that were not there. See things no one else could see.  I kept trying to book trips to Disneyland and kept a set of packed bags by the door even though there was no vacation planned.  Some of the memories are so unbelievable I had to reread parts of my medical file over and over.  You see, I had memories from that time but because they were so bad, I convinced myself they had been part of a nightmare or hallucination.  I’ve never experienced anything like it before and hope I never will again. 

After chemo and aggressive treatment pushed my lupus back into a controllable state I bought a new notebook and picked up where I had left off before I temporarily went mad. I was different before then and afterwards, I was still me.

If there ever was a disease that had the folklore behind it that best fit the magical realism I believed was just plain old reality, lupus is it.  The word lupus is Latin for wolf.  In times past, people who suddenly got a distinct red rash across their face were believed to have been bitten by a wolf.  Stories of witches, ghosts and vampire like creatures that would come into your home while you were sleeping and beat you with a broom across your back or leave purplish welts on your body from trying to suck the life out of you were not dark fairy tales to me.  I heard of the stories in the same manner that other children learned which side of the plate the spoon and fork should be placed when they set the table.  If a witch was believed to have entered your home, this was the one exception where it was acceptable for even the saints of the family to use curse words.  First you could try speaking nicely to the witch and ghosts but if they kept coming back, things got serious fast.  Some ghosts or spirits were not harmful, just lost or trying to communicate something important.  Dreams needed to be told to certain people if they were bad dreams and others if they were good dreams.  Every family had several people who you could call to ask them what they thought a dream meant.  You should also make sure to mention if the pets in the home were acting strangely or if there were any birds outside making noise—  especially if it was an owl.  You didn’t want the dogs to howl too much or an owl ever to visit your house. What makes the song of one bird an omen while another carries hope.  I desperately needed hope and welcomed even the owl if there was the smallest of chance he would mistake my home for another and sing a new song.  After all, no bird, not even the owl, can know just one song.2016Latinastowatch

I received a my diagnosis of lupus, systemic lupus erythematosus, shortly after having my last child.  Like most others afflicted with lupus, joint pain was the symptom that had plagued me the most. I had been bitten by the wolf many times and the puffy bite marks were more a nuisance than anything I took seriously.  As a young child, the pain was a constant and resided mostly in my legs and knees back then.  Lupus is an autoimmune disease and while there has been an increase in the amount of information on it, causes and prevention are a mystery.  A cure may be a reality in the future but not likely in my lifetime.  For now, I live with the knowledge that my own body has turned on me.  My immune system attacks the healthy tissue in my body.  In my case, there was a serious attack launched on all of my organs.

In many ways, lupus accelerated a learning and appreciation that come to some after the loss of a loved one or as part of the aging process.  At the time I was angry- alot of the time I was angry.  I lost something I thought was fearlessness and I wanted it back.  It was the kind some of us get when we are young and think we are immortal or that death is something so far off in the future it doesn’t seem real.  There were times when I slipped too far near the border of fatalism.  I felt like it was hopeless and there was no use in trying–  I was going to die.  When you’re in the thick of sickness and haven’t yet developed a strong sense of purpose it’s not a big leap to depression and hopelessness.  Yes, we are all going to die.  I’m going to die.  I’m just not going to live like that’s all there is to it even if today is the day it happens.

An early worry after I received the diagnosis was worrying whether my children could get the disease.  Doctors assured me it was not contagious.  Whether that fear is unreasonable or not, I still worry– especially about my daughter.  We fit the description of people that are likely to develop the disease.  Much like the debated nature versus nurture when it comes to questions long asked about what has more influence on the kind of personality or behaviors we display–  what causes lupus, genetics or environment?  The answer is still largely a guess and my guess is that it’s a combination of the two.

Lupus is more common in women, especially women in what’s referred to as “child bearing years” in almost everything ever written about lupus.  Child bearing years is apparently between the ages of 15 and 35–  I’m guessing that future literature is going to have to rethink that term as we see families getting started later in life each year.  The dangers of lupus to both mother and unborn child are great, especially if one doesn’t know they have lupus.  Women with lupus have a higher chance than other women to miscarry or the child to die in the uterus before 9 months.

I’m no stranger to hard times.  I’m usually a great source of optimism and encourage others to seek out the bright side. You know those overly positive people that drive you nuts sometimes– that’s me.   Lupus changed that for a while.  Some days I woke up and felt like I was better off staying in bed.  If any of those full of hope optimists happened to show up that day to check on me, they’d be sorry.  My doctor picked up on the change and after a few of my responses, he jokingly said it sounded like I wanted to be an ostrich and bury my head in the sand.  I looked up at him and said, “Finally, someone who understands me!”  I wasn’t kidding or being sarcastic.  I told the doctor I needed him to speak to my family and confirm that we were all dying so they would stop worrying about me.  He asked what I meant.  I told him that we are all dying everyday– skin cells slough off and make their way to skin cell heaven down the drain and wasn’t it true that even most of our hair was really just dead cells.  We were dying and I was dying…they just needed to accept it.  Dr. Newton continued his exam and I caught him glancing over to my husband and mother who were sitting in the chairs near the exam table.  They both lowered their heads.  My words hurt them and they sat there in silence.  They were not embarrassed at my odd behavior and negative attitude.  They were worried.  None of us knew at the time that my brain was swelling.  It was inflamed and causing me to twitch my fingers at people, say things I would never normally say and most of all, it made me callous and mean.  I had long stretches of memory loss.  I often wonder how much of it was really due to the lupus and how much of it was of my own doing out of selfishness so I didn’t have to acknowledge how much pain those around me were in too.

Thankfully, I pulled out of it.  The physical changes I went through during bad lupus flares were the most obvious part of my experience.  Even though there has been an increase in awareness regarding the importance of mental health, there is still such a stigma attached to it.  Many people steer clear of discussing it for fear of being labeled weak or crazy. I’m not a doctor or psychologist.  I was born into a Mexican family. I don’t speak for all Latinos, Mexicans or people with lupus.  I believe staying mentally healthy is just as important as staying physically healthy.  Part of that requires it to be part of the discussion.  If you or someone you care about has lupus, don’t minimize the importance of mental health.  The experience of living with a chronic disease alone is enough to negatively impact how a person feels.  Just because something can’t be detected in blood work or an MRI doesn’t mean it doesn’t exist.  Keep in mind that some side effects of medical treatment can result in changes in behavior and sense of well being.  Prednisone is a common treatment for lupus.  It is an effective anti inflammatory and large doses can beat down a lupus flare quickly.  The down side is that it can also cause mood swings and difficulty concentrating.  The disease itself can also cause symptoms like fatigue, depression, and even neurological problems including psychosis.  The brain after all is an organ. Lupus by definition is a disease that causes periodic inflammation of and damage to the joints, tendons, other connective tissues, and organs, including the heart, lungs, blood vessels, brain, kidneys, and skin.

After I received the diagnosis of lupus, a floodgate opened and I suddenly had names for all the things I had been feeling for so long. Osteoporosis, Raynaud’s, hyperthyroidism, Grave’s disease, Sjogren’s, and on and on.  The thing is that while the names of what ailed me were new, none of the symptoms were.  They were things I had been living with all along.  Some had treatments available, some did not.  The common denominator was that all of the issues were autoimmune.  Knowing what had caused how I felt did give me a sense of relief and control.  Prior to the first massive flare I had, I had often wondered if it really was all in my head.

After I found out I had hyperthyroidism, I was scheduled to meet with an endocrinologist.  Your thyroid is a small gland found at the base on the front of your neck.  It produces hormones that regulate many of your body functions, including metabolism and heart rate. Mine was producing way too much.  My endocrinologist was one of the many specialists I would need to see several times a month that year. I received a treatment of radioactive iodine to slow my thyroid down before it caused permanent damage.  My body was not playing nice with each other.  Parts that needed to be working as a team had went on strike and were taking direction from corrupted signals.

The town I lived in had a population of about 17,000 at the time and was home to some great medical facilities. The specialists I needed to see were about a two hour drive from home.  In many ways, the economic toll on a family is parallel to the mental health aspect of lupus– hidden and not discussed.  We didn’t have especially reliable cars and had to borrow gas money on many occasions.  One of my biggest frustrations was feeling forced to stop. Until  I could figure out what was wrong with me and how I could get better, I didn’t work.  My dream of graduating from college was also put on hold.  There were days I felt like I was a burden on my family.  It killed me to see my husband sorting through the piles of bills when he thought I was sleeping.  I was going through the cycle of grief– emotional responses and stages that range from denial to acceptance.  It’s a cycle so even after reaching the acceptance stages, there is always the  chance that something can trigger a visit around the bend.  I was mourning the life I felt I had lost.

UV light, from the sun or artificial light can aggravate lupus.  In my case it does and this was hard to adjust to.  I had never considered the need for sunscreen.  We were a family of migrant workers.  My father and mother picked oranges and lemons in the fields of California before we settled in the Pacific Northwest for year round work related to all things apple.  In the fields, beautiful women would protect their faces from the sun with a handkerchief so only their eyes shown.  Our play pen, like many other children in the fields with their parents, was a wooden bin.  As my parents finished a row, the field forklift driver would load the bin me and my siblings were in onto his forks and move us to a shaded spot closer to our parents.  I can’t even imagine the bewildered look my father would have given me had I ever asked for sunscreen as a child.  Being outdoors was a huge part of who I was.  I worked outside as much as possible and loved to garden. Early on, in defiance, I would go outside sans protection.  My mindset was “I’ll show you!”.  I soon accepted that the only thing I was accomplishing was a short lived sense of illogical satisfaction.  That feeling was soon replaced by the realization that I was only harming myself and my family– I wanted to get better and they didn’t want to see me sick either.   I started wearing large hats and bought more than I ever would need.  I proposed moving to England so my new fashion pieces would fit in but couldn’t convince my husband.  He supported the hat buying and the bad fake English accent I spoke in when wearing my hats but felt moving to another country was a little extreme.  He didn’t get my “I’m the Queen” jokes but laughed anyways.

Life went on.  We celebrated birthdays and holidays.  We celebrated life.  Woe is me was tucked into a corner of my heart.  It was an important and necessary part of my journey.  I am blessed and have purpose.  I’m singing my song and woe isn’t part of the chorus.

How To Cure Evil Eye

She would tell me that some people just can’t help it.  Everyone needed to know about the evil eye and how to cure it if you fell under the spell.  It was a mother’s duty to tell her children about these things early.  The evil eye wasn’t the only thing mothers needed to prepare their children for.  The boys were at risk of being netted by more tactics than I can remember.  All traced back to a woman– one of those bad women.  Mothers would start the conversation with them as soon as they noticed the boys beginning to gaze longer at the girls they once tormented and chased away.  It wasn’t really a conversation–  it was a lesson.  Any questions would be met with a warning that the information was critical to their survival and a reminder that she would be dead soon and they would be sorry if they didn’t take her words seriously.  A mother could be in her 20s and healthy as a horse and still throw out the reminder that she could die at any moment– you know for guilt.

These things were told so they knew about the dangers that a beautiful woman with bad intent could mean.  All the women seemed to know of an instance where one of the wicked women back home had given a man “calzon hervido” or boiled underwear.  No one actually ate the pair of boiled underwear.  It was used to cover the top of a pot so that the vapors would transfer dark magic that would result in a man becoming obsessed with the woman who gave him calzon hervido.  A kind of bewitching sauna for a pair of calzones was more common than you would think.  It might be a last ditch effort to save a failing marriage or a one sided romance tired of waiting for him to notice her.  Either way it sounded gross.

The man would never know if he had been given the feared potion. The underwear are long gone at the point the man will be sitting down waiting to be served his favorite meal.  For something like this, a meal would have to be special.  After all, she has to be sure he is going to eat it if it’s going to take effect.  She makes something good to eat and he eats like a king.  Featured Image -- 6018

The food most often used with the calzon hervido water is white rice with meat in salsa piled on top, otherwise known as moriscetta.  They all say that everyone else can tell when a man has eaten food made with “calzon hervido” except the man himself.  At that point, he is bewitched and not even a mother can break that spell.

The girls needed to know they should never make food with “calzon hervido” because those tricks were only for women who were so bad and ugly inside that only God could save them.  The women who used these shameful bewitching tactics were not always ugly on the outside. Some were quite beautiful. The women would say that the beauty may be the result of an almost unspeakable pact with the devil..almost unspeakable.  They could go on for more than an hour picking apart the person and her family commenting on how some never seem to age and questioning how this could be.  Sometimes in addition to being beautiful, the group would add that “a veces las que parecen mosquita muerte son las peores”— the one’s that look like a little dead fly are the worst.  I think they meant because a dead fly doesn’t seem like it can do any harm, it’s dead right?  Wrong.  Dead flies can ruin a whole pot of food or a cup of your last soda with in it.  They all echoed the same phrase when giving advice to recently married women or women that started having trouble in their marriage.  Be careful of those innocent looking home wreckers they warned.  Those are the worst.

In my younger years, even after I started living with my husband, I wasn’t a great cook, not even a good cook.  I wanted to be. Food was more than just food.  It could be seen as a laziness or that one didn’t learn how to cook.  When my husband would not eat all his food, I would read too much into it.  We were young, too young but there we were.  It was a real family and a reality for us regardless our age.  One of the things I owned was dinner.  I was not used to failing and I wanted him to like my food better than his own mother’s food.  It was a huge compliment to be told you cook better than your husband’s mother.  I wanted that.

Teach me to cook,” I pleaded and she could see it was serious. “You love him don’t you?” “Yes, I do.” “Then you know how to cook.” Obviously she didn’t remember hot dog and egg experiment.  Maybe she had fed it to the cat under the table. She was kind and would have eaten failed experiments every day.  Her beautiful face could convince the worst cook in the world she was a culinary genius.  The flavors secondary.  To be a good cook you must always do it with love in your heart.  The flavors would catch up to the expression she believed cooking for a loved one was.  A meal was a message.  It needn’t be expensive or complicated.  In fact, simple food let the main ingredient shine.  Whenever she emerged into the room to announce the food was ready, her children saw her as nothing short of a magical being that could make a small feast from a bare cupboard.

The call to dinner was unnecessary.  Wafts of vaporized love, the love of  mother, had found their way to us long before the call.  On those days, the call was lost on me because I never left the kitchen.  That’s where all the women were and that’s where the stories where.  News of who was a bad husband, a bad wife, and possibly not the biological child of this one or that one.  I sat quietly and it was the only time I would help in the kitchen without being told to.  I usually made myself scarce because I hated cooking.  I’d pick up the babies and keep them quiet so the ladies could keep talking without interruption.  My mother’s silence was her approval of me staying.  She knew I usually ran the other way when it was time to start cooking on regular days.  She knew where I would hide.  She just pretended not to.  Her silence was her approval of me being a child longer than she was able to.

She had heard the stories from her mother and she told them to her children and that’s how it went with everything.  She would caution against eating anything from certain people.  Every time she would tell me this I would ask how I would know which people.  There was not a clear answer and I didn’t like that.  Vigilance was important but I wasn’t sure what to look for.  I was stuck.  I couldn’t refuse food when we visited family or friends, that was just rude and I would hear about my poor manners on the way home.

The signs were subtle at times and glaring others..sometimes things like children becoming fussy around a certain person or houseplants dying after that person visited your home was a good sign you should be polite and accept the food, just don’t eat it.  You could get ojo.  The person may not be intentionally causing these things to happen but some people just had the “mirada pesada” or a heavy look—  the evil eye could exist within them even if unwelcome or uninvited. Then there were the one’s who had the “mirada pesada” or even “sangre pesado”, heavy blood and heavy look but they knew it.  They might have even pursued it, invitation and all.  I looked around my home.  I had always had a way with plants and people often admired them when they came over.  A little red thread, almost invisible, was tied to a stem low on the plant.  This was how my mother and suegra saved my plants since they couldn’t just come right out and tell the person with the heavy look to not “chulear” my plants.  It was ok to tell them to touch the plant– it is believed to be a way to minimize the negative impact of ojo.  Babies, especially newborns, are often seen with a red ribbon pinned to them or tied around their little wrist or ankle for the same reason– it repels ojo or at the very least lessens the effect.

The evil eye wasn’t something we read about–  it would come up in regular conversation.  It wasn’t a question of whether you believed in it or not.  It just was.  One of the ways we would be cured of ojo was with a raw egg.  My mother and most of the older women in our family know how it goes.  They say prayers while rubbing a raw egg over different parts of you, they make little crosses on you with the egg.  My sister in law also gets a clean white cloth and does something that feels like she is dusting you.  My mother in law has her own twists to that involve holy water mixed with lavender that she mists you with.  Then they crack the egg and depending on how it looks, they tell you just how bad you were.  If the egg yolk has red or a large white spot, it was bad.  If the egg looks a little cooked, it was bad.  The broken egg is placed in a clear cup of water under your bed for specified time with two toothpicks forming a cross that float over the top.  It is better to not tell your family that eggs sometimes look that way even when they haven’t been used in a limpia.  If they suspect you have doubted the egg reading they will do it all over again.

I was diagnosed with an autoimmune disease almost 16 years ago.  My kidneys stopped functioning one day.  If you are like me, especially when we are young, we think that kind of stuff doesn’t happen to me, right?  Well it did and I worked through it.  When I was very sick with different things brought on by lupus, many of my family thought it was brujeria and ojo.  They held conversations to try and figure out how to stop bad spirits from entering the house and I would frequently wake up because I thought the roof was leaking.  Family would mist me with holy water as I slept or they would perform cleanings of the house.  They knew I went to the doctors and had a cabinet full of medicine prescribed by specialists.  That was all good and fine.  Hard science and medicine was necessary, almost as necessary as the work they were doing to keep me safe.  It wasn’t a question of whether you believed it or not, it just was.

This is me after more than a year with my hair grown out after chemo and other treatments for lupus.

Lupus and Me: A Hard Story To Tell by Estela Caballero

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If there ever was a disease that had the folklore behind it that best fit the magical realism I believed was just plain old reality, lupus is it.  The word lupus is Latin for wolf.  In times past, people who suddenly got a distinct red rash across their face were believed to have been bitten by a wolf.  Stories of witches,ghosts and vampire like creatures that would come into your home and beat you with a broom across your back or leave purplish welts on your body from trying to suck the life out of you were not dark fairy tales to me.  I heard of the stories in the same manner that other children learned which side of the plate the spoon and fork should be placed when they set the table.  If a witch was believed to have entered your home, this was the one exception where it…

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Lupus & Me: A Chronicle Of My Life With Lupus, An Autoimmune Disease

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Music & Feathers:

Here’s what fatigue means to me, how I experienced it. My hands felt light as a feather and heavy as granite at the same time.  I wanted to live and experience life but the shell of my organic being would not cooperate.  I discovered radio and books you could listen to and I held on to that vein of connecting with all the ferocity my feathers would muster.  I would listen to music, stories, news …as the days passed.  I would pause the sounds to hear who was in the house on watch.  They respected my wishes of not asking me how I felt.  This was during the great brain swelling that was really ever so slight.  But that’s all it took to throw my world into a lupus loop (I had to use that…I’ve been dying to use the lupus loop–it’s cheesy but just let me…

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Lupus and Me: A Hard Story To Tell by Estela Caballero

If there ever was a disease that had the folklore behind it that best fit the magical realism I believed was just plain old reality, lupus is it.  The word lupus is Latin for wolf.  In times past, people who suddenly got a distinct red rash across their face were believed to have been bitten by a wolf.  Stories of witches, ghosts and vampire like creatures that would come into your home while you were sleeping and beat you with a broom across your back or leave purplish welts on your body from trying to suck the life out of you were not dark fairy tales to me.  I heard of the stories in the same manner that other children learned which side of the plate the spoon and fork should be placed when they set the table.  If a witch was believed to have entered your home, this was the one exception where it was acceptable for even the saints of the family to use curse words.  First you could try speaking nicely to the witch and ghosts but if they kept coming back, things got serious fast.  Some ghosts or spirits were not harmful, just lost or trying to communicate something important.  Dreams needed to be told to certain people if they were bad dreams and others if they were good dreams.  Every family had several people who you could call to ask them what they thought a dream meant.  You should also make sure to mention if the pets in the home were acting strangely or if there were any birds outside making noise—  especially if it was an owl.  You didn’t want the dogs to howl too much or an owl ever to visit your house.

By Gustavo Caballero of Autism Tales
By Gustavo Caballero of Autism Tales

I received a my diagnosis of lupus, systemic lupus erythematosus, shortly after having my last child.  Like most others afflicted with lupus, joint pain was the symptom that had plagued me the most. I had been bitten by the wolf many times and the puffy bite marks were more a nuisance than anything I took seriously.  As a young child, the pain was a constant and resided mostly in my legs and knees back then.  Lupus is an autoimmune disease and while there has been an increase in the amount of information on it, causes and prevention are a mystery.  A cure may be a reality in the future but not likely in my lifetime.  For now, I live with the knowledge that my own body has turned on me.  My immune system attacks the healthy tissue in my body.  In my case, there was a serious attack launched on all of my organs.

In many ways, lupus accelerated a learning and appreciation that come to some after the loss of a loved one or as part of the aging process.  At the time I was angry- alot of the time I was angry.  I lost something I thought was fearlessness and I wanted it back.  It was the kind some of us get when we are young and think we are immortal or that death is something so far off in the future it doesn’t seem real.  There were times when I slipped too far near the border of fatalism.  I felt like it was hopeless and there was no use in trying–  I was going to die.  When you’re in the thick of sickness and haven’t yet developed a strong sense of purpose it’s not a big leap to depression and hopelessness.  Yes, we are all going to die.  I’m going to die.  I’m just not going to live like that’s all there is to it even if today is the day it happens.

An early worry after I received the diagnosis was worrying whether my children could get the disease.  Doctors assured me it was not contagious.  Whether that fear is unreasonable or not, I still worry– especially about my daughter.  We fit the description of people that are likely to develop the disease.  Much like the debated nature versus nurture when it comes to questions long asked about what has more influence on the kind of personality or behaviors we display–  what causes lupus, genetics or environment?  The answer is still largely a guess and my guess is that it’s a combination of the two.

Lupus is more common in women, especially women in what’s referred to as “child bearing years” in almost everything ever written about lupus.  Child bearing years is apparently between the ages of 15 and 35–  I’m guessing that future literature is going to have to rethink that term as we see families getting started later in life each year.  The dangers of lupus to both mother and unborn child are great, especially if one doesn’t know they have lupus.  Women with lupus have a higher chance than other women to miscarry or the child to die in the uterus before 9 months.

I’m no stranger to hard times.  I’m usually a great source of optimism and encourage others to seek out the bright side. You know those overly positive people that drive you nuts sometimes– that’s me.   Lupus changed that for a while.  Some days I woke up and felt like I was better off staying in bed.  If any of those full of hope optimists happened to show up that day to check on me, they’d be sorry.  My doctor picked up on the change and after a few of my responses, he jokingly said it sounded like I wanted to be an ostrich and bury my head in the sand.  I looked up at him and said, “Finally, someone who understands me!”  I wasn’t kidding or being sarcastic.  I told the doctor I needed him to speak to my family and confirm that we were all dying so they would stop worrying about me.  He asked what I meant.  I told him that we are all dying everyday– skin cells slough off and make their way to skin cell heaven down the drain and wasn’t it true that even most of our hair was really just dead cells.  We were dying and I was dying…they just needed to accept it.  Dr. Newton continued his exam and I caught him glancing over to my husband and mother who were sitting in the chairs near the exam table.  They both lowered their heads.  My words hurt them and they sat there in silence.  They were not embarrassed at my odd behavior and negative attitude.  They were worried.  None of us knew at the time that my brain was swelling.  It was inflamed and causing me to twitch my fingers at people, say things I would never normally say and most of all, it made me callous and mean.  I had long stretches of memory loss.  I often wonder how much of it was really due to the lupus and how much of it was of my own doing out of selfishness so I didn’t have to acknowledge how much pain those around me were in too.

Thankfully, I pulled out of it.  The physical changes I went through during bad lupus flares were the most obvious part of my experience.  Even though there has been an increase in awareness regarding the importance of mental health, there is still such a stigma attached to it.  Many people steer clear of discussing it for fear of being labeled weak or crazy. I’m not a doctor or psychologist.  I was born into a Mexican family. I don’t speak for all Latinos, Mexicans or people with lupus.  I believe staying mentally healthy is just as important as staying physically healthy.  Part of that requires it to be part of the discussion.  If you or someone you care about has lupus, don’t minimize the importance of mental health.  The experience of living with a chronic disease alone is enough to negatively impact how a person feels.  Just because something can’t be detected in blood work or an MRI doesn’t mean it doesn’t exist.  Keep in mind that some side effects of medical treatment can result in changes in behavior and sense of well being.  Prednisone is a common treatment for lupus.  It is an effective anti inflammatory and large doses can beat down a lupus flare quickly.  The down side is that it can also cause mood swings and difficulty concentrating.  The disease itself can also cause symptoms like fatigue, depression, and even neurological problems including psychosis.  The brain after all is an organ. Lupus by definition is a disease that causes periodic inflammation of and damage to the joints, tendons, other connective tissues, and organs, including the heart, lungs, blood vessels, brain, kidneys, and skin.

After I received the diagnosis of lupus, a floodgate opened and I suddenly had names for all the things I had been feeling for so long. Osteoporosis, Raynaud’s, hyperthyroidism, Grave’s disease, Sjogren’s, and on and on.  The thing is that while the names of what ailed me were new, none of the symptoms were.  They were things I had been living with all along.  Some had treatments available, some did not.  The common denominator was that all of the issues were autoimmune.  Knowing what had caused how I felt did give me a sense of relief and control.  Prior to the first massive flare I had, I had often wondered if it really was all in my head.

After I found out I had hyperthyroidism, I was scheduled to meet with an endocrinologist.  Your thyroid is a small gland found at the base on the front of your neck.  It produces hormones that regulate many of your body functions, including metabolism and heart rate. Mine was producing way too much.  My endocrinologist was one of the many specialists I would need to see several times a month that year. I received a treatment of radioactive iodine to slow my thyroid down before it caused permanent damage.  My body was not playing nice with each other.  Parts that needed to be working as a team had went on strike and were taking direction from corrupted signals.

The town I lived in had a population of about 17,000 at the time and was home to some great medical facilities. The specialists I needed to see were about a two hour drive from home.  In many ways, the economic toll on a family is parallel to the mental health aspect of lupus– hidden and not discussed.  We didn’t have especially reliable cars and had to borrow gas money on many occasions.  One of my biggest frustrations was feeling forced to stop. Until  I could figure out what was wrong with me and how I could get better, I didn’t work.  My dream of graduating from college was also put on hold.  There were days I felt like I was a burden on my family.  It killed me to see my husband sorting through the piles of bills when he thought I was sleeping.  I was going through the cycle of grief– emotional responses and stages that range from denial to acceptance.  It’s a cycle so even after reaching the acceptance stages, there is always the  chance that something can trigger a visit around the bend.  I was mourning the life I felt I had lost.

UV light, from the sun or artificial light can aggravate lupus.  In my case it does and this was hard to adjust to.  I had never considered the need for sunscreen.  We were a family of migrant workers.  My father and mother picked oranges and lemons in the fields of California before we settled in the Pacific Northwest for year round work related to all things apple.  In the fields, beautiful women would protect their faces from the sun with a handkerchief so only their eyes shown.  Our play pen, like many other children in the fields with their parents, was a wooden bin.  As my parents finished a row, the field forklift driver would load the bin me and my siblings were in onto his forks and move us to a shaded spot closer to our parents.  I can’t even imagine the bewildered look my father would have given me had I ever asked for sunscreen as a child.  Being outdoors was a huge part of who I was.  I worked outside as much as possible and loved to garden. Early on, in defiance, I would go outside sans protection.  My mindset was “I’ll show you!”.  I soon accepted that the only thing I was accomplishing was a short lived sense of illogical satisfaction.  That feeling was soon replaced by the realization that I was only harming myself and my family– I wanted to get better and they didn’t want to see me sick either.   I started wearing large hats and bought more than I ever would need.  I proposed moving to England so my new fashion pieces would fit in but couldn’t convince my husband.  He supported the hat buying and the bad fake English accent I spoke in when wearing my hats but felt moving to another country was a little extreme.  He didn’t get my “I’m the Queen” jokes but laughed anyways.

Life went on.  We celebrated birthdays and holidays.  We celebrated life.  Woe is me was tucked into a corner of my heart.  It was an important and necessary part of my journey.  I am blessed and have purpose.  I’m singing my song and woe isn’t part of the chorus.

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