Unspeakable: Lupus & Me

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.

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.


5 thoughts on “Unspeakable: Lupus & Me”

  1. Estela, this is an amazing story, but even more, you have provided additional information to all readers – it appears this can be misdiagnosed quite often, and not that I or anyone I know has lupus, but I did not know the sun and UV rays had an effect. The fact that you have had to learn to live with this by what seems like “trial and error” must be so upsetting at times. But, you have and will persevere! Take good care of yourself!

    Liked by 1 person

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