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.

3 thoughts on “Lupus & Me: It’s All In Your Head by Estela Caballero”

  1. A very heartening story, Estela. I wanted you to know that I nominated you for A Liebster Blog Award. I was so taken by your stories that I didn’t realize you were not in the up and coming blogger category, that you were a well established blogger with many followers. I missed the number of followers that you had. Well, I still want you to have the award! You can find out what it is and what the rules are here:
    http://cerobinsonauthor.com/2014/11/17/before-sundown-has-been-nominated-for-a-liebster-blog-award/

    Liked by 1 person

  2. Thank you so much! What a wonderful welcome to new bloggers. I’ve seen them on some of my favorite blogs! I am working on my responses and want you to know how appreciative I am of your kind words and encouragement ❤
    Sincerely,
    Estela, Chief Star Gazer at 4utu.wordpress.com

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  3. Estela, thank you so much for accepting the Liebster award and for sending me the answers to the questions. Your answers are great and now I know a lot more about you. In your writing there is always seriousness and a nice balance of humor. I love reading your posts. There is strength and power in your writing, and a good attitude toward life. It’s refreshing! I’m going to copy the answers to your questions here. It would be nice for others to read your answers to know you better and to appreciate your writing. You can copy them and place them anywhere you want to on your blog site. And you can copy the Liebster Blog Award badge from my site and place it on your site. It’s nice to show it. All Best, Christine

    4utu says:
    November 19, 2014 at 8:37 pm (Edit)
    Thank you for nominating me for this award! Here goes 🙂
    1. Where do you live? Why do you live there?
    I live in Oregon state. I was born in central California and lived there until I was 4 years old. My parents worked in the orange and lemon orchards and packing sheds. We started coming to Washington state and ended up staying because there was work year round. I am an HR Manager for a large potato and tortilla chip maker and accepted a job that required relocation so that’s how I made it to the Oregon Trail.
    2. What is your favorite season of the year?
    I used to love summers. Something about it being bright when you wake up and then staying outside until 9 pm because it’s still not too dark is magical. When I was diagnosed with an autoimmune system disease called systemic lupus, I found out that sunlight and even florescent lights can trigger a lupus flare up. It changed my life in so many ways but one of the nice things I discovered is that it’s an adventure to garden in the early morning hours before the sun really comes up or even in the evening. I’ve always been a little different  This just gave me a reason people could understand.
    3. What have you learned about yourself recently?
    I learned that I am an introvert. I had heard the word before but it didn’t seem to fit who I was. Most people I know would call me an extrovert—the life of a party or someone who always gets a conversation going, even if the group involved are strangers. I can do that and on the outside appear to be an extrovert but the truth is that it takes a lot out of me and I need quiet time to think and relax.
    4. Describe a happy memory from your childhood.
    We lived about an hour away from Grand Coulee Dam in Washington state. My father took us to see a laser show that was played against the dam’s running water every Fourth of July. It was a beautiful dark starry night and I felt like I was in a dream. The dam is massive and the roar of the water makes it seem like it’s alive.
    5. What is the best book you’ve read recently?
    These is my words by Nancy Turner. It’s got stuff about settlers going out west, love, tragedy, humor— all the things I love!
    I’m kind of a big nerd. When we lived in Washington state, we lived in an area that got a lot of snow. We didn’t have money for cool moon boots or even good shoes. We did have store bags. We would wrap plastic grocery store bags around our shoes so our feet and socks would get wet on the way to school. I would always walk in the deepest pockets of snow and try to get the other kids walking with us to pretend we were Lewis & Clark exploring the Oregon Trail. It should go without saying but yes….I was that girl!
    6. If someone were to make a movie of your life, what actress would you want to play you? What genre would best characterize your movie? (Of course it’s a repeat favorite question).
    Penelope Cruz would be such an honor! I love her. I’m going to add sparkly vampires, time travel, John Oliver, people in capes, at least one zegraffe (cross between zebra/giraffe), The Bukis and The Tigres Del Norte and such to make up a totally new genre.
    7. If you could live in another time, what time would that be?
    I’m good with the time I’m living in now. There have been a few really amazing days that make me want to invent a Groundhog Day Remote control so I could go back to them whenever I want.
    8. If you could be an animal, what animal would that be and why?
    Tina the Llama from Napoleon Dynamite. Why? Because she’s Tina the Llama from Napoleon Dynamite.
    9. Why did you decide to start blogging?
    I thought I wanted to publish a book. I was so self-conscience and still am a little. I like telling stories but I hate trying to figure out where the commas, and all those other annoying punctuations go. I have systemic lupus and my son has autism. I have found that there isn’t always information from the individual or family that has special needs or serious medical condition. When I first received both of the diagnosis I wanted to hear and see what this looked like and how it impacted other families. I found some books at the library but not what I needed. I also like to make people laugh and smile. I hope my blog makes people do those things! I want people to see that anything is possible.
    10. Where do you find inspiration for what you write?
    Family, friends, walking around, after I experience brain freeze from eating a Tropical Blizzard too fast. Personal experience is in there too 
    11. What is your blog theme (or more than one), stories, photography, books or poems? Why did you choose that blog title?
    My blog is called 4utu (For you too) and my tag line has been: It’s Your Life. Drive! I want people to see their individual power and not be afraid to assert themselves and fight for what they want. I have a few themes: Lupus & Me, Autism Tales and ongoing stories about some pesky cats— the ringleader’s name is Super Fluffles as he insists we call him.

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