Tag Archives: lupus blog

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 meeting.  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

Final Victor

Steps just like a whisper

This thing

This one

Sinking even quicker

Singing

Wisdom, what have you done

Cry out I am your victor

They said this day would come

Standing here before me

Fear masked but fool no one

— fin–

❤ Estela

 

Photography, Riddle Of The Victor and original artwork by Estela Caballero

 

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.

True Love: Don’t get me wrong by Estela Caballero

“It’s not a fairy tale but I fall in love with him more and more everyday.  The secret is that we are kind to each other.  We love each other but we like each other too– and we tell each other often through words and actions.”

–Estela Caballero