Tag Archives: lupus

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.

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Beauty Sleep & Growing Pains

I don’t know if dreams really mean anything more than what we want them to mean.  Maybe that’s enough.  It’s possible that somewhere in the years leading up to the earthquake that woke the volcano I had heard someone speak of it and that’s why it came to me in dreams long before it was reported in the news.  The need to fully explain or understand those things was abandoned when I realized there was a good chance I wouldn’t know what to do with the meaning if by some miracle it came to me.

I sat up in the bed to remind myself it was only a dream.  My mom said prayers to try and rid me of the nightmares.  She did a limpia on me and called my grandma in California to see what else might help.  I heard her say that the doctor told her they didn’t know why my legs kept hurting and that I was probably making it up.  After much consultation with aunts, ladies from work and neighbors, it was decided that the nightmares were the result of susto—  I must have been startled so bad the experience was still stuck inside me.

At the last visit my mom asked the doctor if he had any idea where I had learned to convincingly fake a fever so good it required the school nurse to call work so she could pick me up twice that week. The doctor assured my mother it was common for children to get growing pains and it would soon pass.  It would take years of increasing pain and a visit to the place life meets what comes next to find a name for one of my demons, an auto immune disease.  Lupus.  I didn’t know the words you were supposed to use to pray.  The few times we went to church it was in Spanish but I only recognized a few of the words.  At night I would mumble words that sounded like the ones I heard people saying as they knelt in prayer.  It was neither Spanish nor English but I knew God would understand my request.  I wanted him to know I wished to stop growing that instant.

My mom told my aunts about the old lady and old man in my dreams that were always sitting on the inside of the volcano on a ledge.  They both sat with their knees pulled to their chest.  I sat crisscrossed near the old lady.  I wasn’t afraid and it wasn’t hot.  Besides, I knew I would only be in the volcano for a short time.  I would wake up at the same time each night for eight days in a row.  Freedom and sleep were mine for ten days each month.  I always started in the volcano but always made it out.  I could do things in my dreams I couldn’t do in real life.  I swam like a fish and even drove my mom’s car.

It was winter and the temperature of the little space we inhabited varied in temperature. My mom told us that where we used to live it never got this cold and I wished we were there.  The warmest space– a small room used as kitchen and living room Featured Image -- 5622could best be described as cold.  The second warmest room was very cold and the third room, the bathroom, required you to wear your jacket if you wanted to make it out alive without frostbite.  I was six years old and disliked soap and water almost as much as I hated sitting on a cold toilet seat.  I had mastered the art of the fake cough.  I had to use it sparingly and could never directly call attention to it or my mom would figure out it was faked to get out of going to school.  I didn’t have snow boots and on the days the snow was high enough there was no way I would get to school with dry feet.  My mom came up with a solution, plastic bags wrapped around our shoes held into place over the bottom of our pant legs with a rubber band so the bottom of our pants would stay dry too.  She looked tired as she fashioned the last grocery bag leg warmer contraption around the last of us.  She didn’t get put on the list to stay over an extra four hours that shift and got there just as I was herding the cry babies out the door on the march to school.  I was extra happy thinking I had escaped the grocery bag torture.  I didn’t mind wet shoes and pants.  They would dry in no time.  The cry babies didn’t know what was good for them and were happy when my mom whipped out the large ball of grocery bags she saved under the kitchen sink.  They were shorter than I was and the snow reached heights that made it look like they peed themselves.  I wouldn’t let that opportunity go to waste if they didn’t behave on the walk to school.  I would threaten to tell the other kids that would join us on the walk that they had peed if they slowed us down or started fighting with each other.  In the 10 minutes it took for us to get our protective gear on the tattlers told my mom that they asked me to put the “moon boots” on them but I told them they were not moon boots, they were just dumb plastic bags and we didn’t have any.  They asked my mom if dumb was a bad word because they thought it was but I told them it was not.

My first trick or treating night without my mom trailing us came only after weeks of explaining that I was grown up enough to bang on stranger’s doors demanding candy on my own.  If my choice of costume didn’t convey my maturity enough, I don’t amichaeljacksongloveforhalloweenknow what would have.  The only sequins on me that Halloween would be on the old shop glove I used as the base for my Michael Jackson sparkle glove.  I was grown.  I wore her down but only after she and several other moms strictly narrowed down the Halloween candy circuit to radius of a few blocks from home. “Stay close” they said as the small mob of sticky handed ghosts and princesses made their way down the street led by the best looking Michael Jackson the small town of Quincy had ever seen.Peppy pepinos

I could never resist the tangy sourness of cucumbers drowned in lemon juice, Tapatio sauce and salt.  Those three ingredients can go on almost anything– popcorn, mango, watermelon, oranges, slices of lemons (yes, lemon juice on lemons), like I said almost anything.

I once tried something I saw one of my aunts do–  sprinkle the contents of a packet of lemon Kool-Aid on anything you would add lemon juice and salt to.  I had a near death experience and figured I hadn’t been introduced to this potent mix early enough in life to live through another attempt.  There would be no more powdered Kool-Aid on my snacks.

It was May and my little brother was recovering from having his appendix removed.  The same doctor that told my mom the leg pains and fever that never seemed to leave me that year were a product of my imagination also told my mom that my baby brother kept crying and was inconsolable because he was spoiled.  My mom’s reaction was not surprising to me. If I had been allowed to speak while my mom was talking, I would have told him to run. The doctor could not have known that the defeated and tired looking woman who smelled of greasy fries and smoke from the french fry plant she just finished working her fifth 12 hour shift in a row had more fight in her on her worst day than he could ever scrape together in his lifetime.  She finished high school and worked as a nursing assistant in California and again in Washington at a place they said crazy people lived.  Our school bus would drive by there and kids would whisper that the mean bus driver probably escaped from there. The job didn’t pay enough so she abandoned her dream of going to school and being a nurse like the ones who never had to figure out how they were going to change the diaper of a confused old man who would pull her hair and spit at her because he thought she killed his wife.  A real nurse that could sit at a desk even if she wasn’t on break and no one would yell at her and ask if she didn’t have anything better to do.  Just as my mom finished telling the doctor what he could do with his professional opinion of my made up swollen joints and fever and her baby’s cries that were now accompanied by fits of wretching, one of those real nurses came rushing in to make sure everyone was ok.  In less than 24 hours we would be in California and as my brother lay in the intensive care unit of the same hospital he had been born in, my father was facing the end of the world on his own.

The sky turned black and adults not at church that Sunday morning fell to their knees. It was May 18, 1980.  At 8:32 am, Mt. St. Helens, a volcano nearly 300 miles away from our home in Washington had awoken and was at once released from my dreams.  “What does it mean?” my mom asked my grandma and other ladies as they quickly changed the channel showing reports of the eruption as me and my cousins came to see if the food was ready.  They had no answer and knew it was best to say nothing of the dreams of a little girl that resembled dreams less and less.  On that first visit back to California after we moved to Washington I was introduced to these unnaturally large pickles they sold at every corner store. I knew we couldn’t stay there forever and would soon return to my father and the small giant pickleless town. They sat floating in a glass jar that could have easily fit one of the small pigs we used to butcher to celebrate birthdays, baptisms or for the pure love of chicharrones.  The lady behind the counter would grab the pickle with tongs and hand the beast to you in a triangle of flimsy wax paper.  It was not meant to be a long term storage or transport container–  you had better eat that pickle before you made it home.  They weren’t the prettiest things around and the longer they were exposed to the open air, the more questionable your choice of the pickle over Boston Baked Beans and Lemon Heads became.  Years of unsweetened lemon Kool-Aid sprinkled on almost anything had dulled the senses of my aunt, who was only a few years older than me along with the gang of cousins that joined me in trailing her to the store.  I believed her when she said the pickles were the best.  They must be, she always got one whenever my grandma gave her spare change.  She was tall and beautiful and I wanted to be just like her.  My mom loved her youngest sister so much she gave me her name, my middle name.  With my quarter on the counter I pointed to the pickles and readied myself for the magical experience I was hoping not only tasted great but also made me grow a few inches over night and straighten out my two front teeth.  My aunt had perfect teeth.

I finished that first monster pickle before clearing the front door of the house.  “What’s wrong?” my mom asked as I rushed by her to the bathroom with the sourness of 10 packs of bitter Kool-Aid burning everything from my nostril hairs to my tonsils.  “Growing pains” I shouted between hurls and a grin over the  surprise they would all be marveling over tomorrow when I arose from my beauty sleep surely transformed.  When we returned from California all the yards in the trailer park still had a dusty veil of the silky ash. My baby brother alive and dreams of the volcano replaced with a new puzzle.  Every two weeks the little ball of plastic bags grew.  My dad said winter would come early that year.

–fin–

Estela, The Dreamer

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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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Abuelitas by Estela Caballero

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If I could have a conversation with the little Estela in the picture, I’d tell her to stop cutting her own bangs.  The rest of it, well, it might go something like this:

You will be a mother one day, sooner than you should be.  The experience will humble you like no other.  You will gain an appreciation for your parents that cannot be learned any other way.12822021_962929343744562_1119923883_n

You will spend many nights praying for your children.  You will worry.  There is no way around this.  You will love them more than you know you are capable of and they will love you back just as hard.  For several weeks after each beautiful baby is born, you will wake many times at night to make sure their sweet breath keeps the same steady rhythm that was set before they met the larger world.  You will tickle their bellies and never tire of that wonderful scent that is the strongest at the top of the head near the soft spot.

I would try to convince you not to do all the things you shouldn’t but know that while it’s not a must, you will.  All the twists and bends will bring you to a good place.  I can’t tell you too much for fear you will change something that could make you miss the great things you have come to believe in and fight for.  And boy, do you love to fight!

Little Estela, embrace the picture.  Take our photo from the place your shame and embarrassment led you to stash it.  We never get braces and it works–  you develop quite a character in your desperate attempt to draw attention away from those teeth that bring you daily terror during their occupation of the place that once held beautiful straight baby teeth. It’s easy to find fault and point out all that is wrong with you and the world.  The easy road is crowded and noisy and the walk a part of life.  The noise and the walk make us stronger.Go Tell It

There is great love, great kindness, and a world waiting for you to discover it.  No one can stop you from doing anything you set your mind to.  In fact, every time someone makes the mistake of telling you your idea is crazy, impractical and impossible, it just makes you want to do it all the more.  And you do it.abuela estela caballero bloguera 4utu wordpress latina rising star

The day you hold your first grandchild, six generations of your family are alive and well.  Your mother, grandmother and great grandmother, they are kind with their teachings about life and do it in a way that lets you preserve your youthful ego.  When you finally pull together a thimble of their wisdom, too many of them are long gone. It will pain you to think you’ve missed the opportunity to thank them and let them know you see what they meant.  After many more years, the thimble holds a few more drops and you come to understand words were not necessary with them and never were.

Dear Tegua, listen more than you speak.  When someone is speaking, really listen to what they are saying.  Being quiet doesn’t equal listening.  Thinking up witty replies or how you will counter a statement you disagree with while the other person is talking doesn’t equal listening either. Learning how to listen changes our life.

My great grandmother in the white surrounded by my great aunts.  This is the only group picture where we are the tall one.  That’s us on the far right.

Here we are with mom and grandma and below it’s us with grandma and Mary.  When the world thought you were crazy, they were among those who stood strong by our side. They retold the story of the whole thing to you in a way that kept you from fearing the future.  Your recovery and subsequent success came from the blood that flows through your veins, your daughters veins and flowed into the essence of what we are and will be long before the abuelitas.

There will come a dark and heavy day, sometimes so many in a row you will be sure they happened after our talk.  You will go over the talk in your head reconstructing a timeline.  After you are certain I would have known about these days at the time we talked today, you will wonder if I left it out because I didn’t want to dishearten you.  I know about it.  We were never alone and we make it out just fine.

These beautiful rays of light that have walked in front, beside but mostly behind you will remain even when the eyes cease to see what the heart knows is there.  One day you will take your place with them as well.  That knowledge will not bring you comfort at the time.  It prepares you for little you will be able to understand for some time– a seeming eternity.  Until it is your time and you realize it’s your turn to prepare your own babies now grown, for the walk.

Little Estela and I would like to thank you for taking time to visit today.  I’d love to hear from you and see pictures of the little you– what would your talk be like?

Sincerely,

Estela

Lupus & Me: Crickets and Hoppers by Estela Caballero

We really didn’t go to the doctor as children.  Sick or not, I hated sitting still. There appeared to be a whole lot of sitting going on the few times my mom made it clear going wasn’t a choice.

As I became an adult, I avoided doctor’s visits as much as possible.  Partly because of the cost and partly because anything aside from prenatal visits usually didn’t make the top of the list when I had free time.

The signs that I was sick, more than just regular sick, were present even as a child.  I grew up mostly in the country and spent time outside digging in the mud or trying to catch grasshoppers.  I would get terrible leg, joint and bone pains. I was never diagnosed with anything back then but it’s clear now that I had juvenile arthritis, an autoimmune disease.

On the bad days, I would think about those grasshoppers as I lay in bed rubbing my legs together for relief.  I had once heard that crickets made noises when their legs rubbed together.  With a symphony of cricket music playing in my head, time would bring temporary relief from the episode.  The fever would subside.  My shaky legs, weak and achy would threaten to buckle as I climbed out of the bed.  I’d remind my skinny limbs that I was their master and it was time to go.  I had work to do.  I would return back to my job of chasing grasshoppers and bossing my brothers and sister around while our parents worked.

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Lupus is an autoimmune disease that turns your body on itself.  Your own immune system attacks really important things.  In my case, my organs and all other innards were a buffet for lupus.  My lupus was a pig back then and didn’t stop on the inside.  I had never thought of skin as an organ.  I found out that it’s actually the largest organ in the body– well technically it would be outside the body but that doesn’t sound right.  Tomatoes are technically fruit.  Skin is technically an organ.

Can you catch lupus?  No.  It’s not contagious and even though I was treated with chemotherapy, it’s different than cancer.  Chemotherapy is usually reserved for lupus that begins to invade and severely damage your organs– even if you start treatment.  Untreated it can lead to death.  This is why lupus and many other autoimmune diseases are scary–  I was sick and had lupus all of my life.  I was well into my adult life when I was diagnosed.  Even though I didn’t like going to the doctor, I had been seen for everything from having a baby to bronchitis to strange hives that would cover my body in a matter of minutes and then disappear as fast as they came.  Lupus can seem like so many other illnesses or come and go so quickly, many people (and their doctors) might think they are going crazy.  It was not all in my head.  There are hundreds of thousands of women and men, but mostly women, who have been sick all their lives and may even be dying before their time and have no idea they have lupus.

Getting diagnosed is a start– for me, the diagnosis came the day I had to make a choice.  Plasmapheresis, or plasma exchange is another uncommon treatment.  I had a choice between the chemotherapy and what was in essence a entire body blood filtering process.  A physician I trusted recommended the chemo.  It worked in my case.  After the chemo treatments, which are much lower doses than what cancer patients receive, hope and prayers came true.  I got better.

I had never heard of lupus before the major flare that landed me in an ER room.  I researched information about the disease.  I once declared that I had a 50% chance of dying of lupus after incorrectly quoting statistics about mortality in systemic lupus.  At my next doctor’s  visit I asked him how long he thought I had to live.  Dear Dr. Newton, a now retired rheumatologist helped me understand what the study was measuring.  I have a severe form of lupus.  I still do.  I understand how to manage it now.  There are countless studies on lupus and life expectancy.  It’s better odds than I thought.  80% – 90% of people with lupus have a normal life expectancy.

I had a choice then and I have a choice now.  I can dwell on all the things I need to do in order to be healthy and see it as a negative.  I can chose to be thankful that I have access to medical care and have been able to learn how to manage this disease.  I chose the latter.  I know what it is and it knows me.

The large expanse of conditions and how they present is a challenge for people with lupus. It doesn’t look the same in everyone.  I know there are others not as fortunate as I am.  It’s a rough and tough disease.  Not everyone has support or access to care.  Some of my medications would run in the hundreds of dollars.  When it was tight, I remember having to choose groceries over medication.

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Here I am after treatment starting to get back to normal.  This was one of my favorite wigs.  I was tapering off of high doses of a steroid called prednisone and I became less swollen. My outside was starting to match how I felt on the inside.

“But you don’t look sick” was bound to come up in conversations after the flares settled down.  Sometimes I do look sick.  Sometimes I look great.  One of the challenges with lupus is that your physical appearance doesn’t always match what the inside feels like.  “It’s not a real disease, it’s all in your head” was a less frequent comment but I suspect it was a statement not always said out loud.  I choose life.  I choose to love and allow myself to be loved.  I choose be grateful.  I choose to live like today was my last day.  I still sing the song of the crickets on bad days.  It’s a melody that rises and falls like the moon.  Sing your song and get back to chasing grasshoppers as soon as possible.

Thank you for visiting my site.  I appreciate all of the encouragement and never expected I would meet so many beautiful souls all across this world.  The picture below sums it up.  Make the best of a bad hair day or no hair day or growing back hair day.  I had several mullet like days.  It grew back.

Truly, gracias.

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There are numerous sites about lupus.  Here’s a link to one of them if you are interested in learning more about lupus.

http://www.nlm.nih.gov/medlineplus/tutorials/lupus/id209105.pdf