Tag Archives: Autoimmune

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

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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About the time I went crazy by Estela Caballero

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.

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.

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.

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: It’s All In Your Head by Estela Caballero

Lupus & Me:  Dying to Know

Please help increase awareness of this disease.  Someone is dying to know what’s wrong with them.  People with lupus don’t always look sick.  Hispanas and African American women are two of the largest groups diagnosed with lupus.

“Can you just test to make sure I’m getting enough oxygen?” I asked my doctor.  It helped we had a history.  She had been our family doctor for the last two years.  I had sat in the very same exam room several times, just never as a patient.  She was good with the kids but maybe I needed a specialist.  She stepped out for a few minutes and I could hear a cart rolling in.  On the silver tray were four empty vials.  Another nurse came in and had me breathe into a tube several times.  The test confirmed what the doctor told me, there wasn’t anything wrong with my lungs– well at least the levels of oxygen was within normal range.  I had been sitting in the exam room for more than an hour and if my worries had been right, I should have passed out on the way to the clinic.  Why did I feel like I wasn’t getting enough air?  I was going through the motion of breathing in and out but my chest tightened and I felt like I was dying.  I was scared.  I would return to the clinic two more times that week and by the end of the month the emergency room.  I wasn’t making this up.

I got a call from the doctor’s office.  They needed to see me in person about some results.  Earlier that month, I had seen a doctor at the walk in clinic.  I was in her office today for something unrelated.

I had started taking walks at lunch time with a friend at work.  I had friends before but with this new friendship, I came to understand that I can be a difficult person to befriend.  I was great at superficial chatting.  I was not comfortable with real discussion.  I didn’t have anything to hide but had just grown up with the understanding that you never get too close or open up too much.  There was always enough drama and opening my world up required more effort than my already exhausted spirit could sustain.  This friend didn’t give up and for that I am ever grateful.  Her persistence annoyed me.  Why did she care so much about me and why wasn’t she satisfied with the spurts of quick witty banter that seemed to tide most over.  I could always make a group bust up with laughter.

On one of those walks, she kept looking over at me.  She asked how I was feeling.  I gave her the default response but threw in a little reality because I knew she wouldn’t be satisfied with my half hearted truth.  “Something’s wrong,” she said.  I stopped walking.  She turned around a few steps later when she noticed I wasn’t at her side.  “I know something’s wrong!  Don’t you think I know that!  I just don’t know what it is and I just don’t want to talk about it,” I snapped back.  “No, something is really wrong.  Your face..your lip.”

All morning my upper lip alternated between tingling and numbness.  I stopped drinking my coffee because the lack of sensation in my lip amplified my natural clumsiness.  Brown droplets sprinkled on my shirt collar and a few down the front.  As we were walking, something to the left of my nose kept catching my eye.  It was like the patch of skin you can see of your own face if you cross your eyes except I wasn’t crossing my eyes.  I lifted my hand to my face.  It was 10:30 am and I know what my face looked like when I drove to work.  I looked normal.  The corner of my eye was catching the left side of my lip that had now swollen so much I’m sure people would have thought I got decked if they hadn’t seen the change happen with their own eyes.

My elbow had been swollen, hot and painful for several days.  I would get home from work and hold my arm out straight to inspect the tender fluid pocket that dangled below the joint.  That year I had countless random rashes, hives and painful skin conditions.  Aside from the occasional red thick darkening that blanketed my cheeks and the bridge of my nose, my face hadn’t betrayed me much.  I wasn’t having any trouble breathing but the swelling wouldn’t go down.  At the walk in clinic the doctor told me I had edema.  I was given large doses of allergy medication and went home for the rest of the day.  That’s it.  The doctor wasn’t overly concerned because I wasn’t having difficulty breathing.  He said I could get some tests done with my family doctor or come back to the walk in if the swelling didn’t go away in a few days.  I took over the counter anti-inflammation medicine for the painful elbow.  “Sometimes our bodies do strange things,” the doctor told me.  He told me to ice it and follow up with my doctor if it got worse.

I would leave my family doctor’s office questioning my sanity.  There wasn’t anything wrong with my lungs even though I felt like an elephant was sitting on top of my chest.  My oxygen levels were fine.  The swelling in my elbow went away and I just felt achy.  I was probably just getting the flu.  Both doctors asked if I had been under a lot of stress recently.  They were grateful for the answer my friend would not accept.  I was fine.  My lab results were fine.  I would be on a cycle of fine and sick a bit longer until the day my body announced in no uncertain terms that I was anything but fine.  Several months later a doctor would use a small plastic cup to show me the amount of fluid he estimated was trapped in the lining of my lung.  Yes, I was stressed.  Of course I was stressed.  A patchwork of different doctors and disconnected medical records resulted in treatment of the different symptoms I experienced over the years.  It truly takes a detective to connect the dots and my spotty history was just on the verge of becoming a Van Gogh.

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

All In Time by Estela Caballero

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It would become clear to her

All in good time

The answer

The secret

Drunk upon wine

Something awoke her

Now in her mind

Was it laying in wait for her

Eyes open

No cries

At the time of her launch

From the heavens

From sky

Take the scene in the future

They’d all question why

Now the departed will answer

All in good time

Don’t ask for answers

Your mind will resist

All that will come of it

Relentless pain and guilt

If by chance it’s revealed to you

After all it was hidden in plain sight

Deep breath

Then I’ll pray for you

A sweet little lie

When this one starts

That other met end

When this one begged

The other with crown upon head

All in time he said

You’re just a girl

Stand back where it’s safe

You see

You might get hurt

All in time

It was painfully clear

She was the strong one

He the sweet little dear