A New Set of Bullies

Happy New Year, dear friends.  As many of you know, 2016 was a roller coaster ride for me, both physically and emotionally, because of my health.  I puked nearly every day and absolutely every week, no less than twice a week, with the exception of a very few times when I found intermittent relief with one gimmicky pill or another.

I developed what I thought were more food sensitivities, as I had increased swelling and pain after ingesting certain ingredients.  For nearly all of 2016, I almost exclusively ate grilled cheese sandwiches because that was about all I could hold down.  (I used to say the only thing better than cheese is more cheese.  Do you know how sick I am of cheese now?)  And I got sicker.

I had my intensely infected gallbladder removed which provided temporary relief, only to find out that the surgeon left an extremely calcified and diseased gallstone in me which made me sicker than ever for nearly a month until it worked itself out.    And I got sicker.

I literally ate acid before each meal to help it digest before I vomited it.  And I got sicker.

My energy was ebbing to the point that I barely was able to stay awake for work hours only.  I was losing big clumps of hair everywhere.  Every. Single. Day.  My vision was blurred, and I was dizzy most of the time.  And I got sicker.

I put up with asshole “friends, acquaintances, and family” calling me a hypochondriac, telling me I didn’t “look sick,” doubting that I vomited as often as I claimed because I hadn’t lost much weight, telling me I needed to see a psychiatrist, and advising me to seek mental help.  I became the butt of their jokes, either by claiming, “Oh, we can’t serve that food; we might as well serve cardboard or Rachel might throw it up,” or “Maybe instead of visiting the toilet, you should visit the psychiatrist’s couch.”  I tried to force a smile.  I tried to shrug it off and not be a bad sport.

But I was boiling inside!

Can you imagine how stressful it is to not know what’s wrong with you, to want to eat like normal people, and to select a meal not based on price, availability, or taste, but rather solely on how it might taste when I throw it up later? The simple question, “What’s for dinner?” literally reduced me to tears on more than one occasion.

I feel that most of these so-called “friends” were no less bullies than the jerks on the playground when I was a kid.  I know they thought they were funny or cute, or they didn’t know what to say, or they were the type that needed to “fix something” and because they didn’t know how to “fix me” they had to just say something.  But the sharpness of their words stung just the same.

After over 6 months of tests with no real answers, I was disgusted by doctors, and just fed up with life in general.  And then my hair started falling out even more.  Since I’d already been diagnosed as anemic, I made an appointment at an entirely different clinic, hoping I could just get an iron infusion and not have to wait for the pills to kick in.  As I mentioned in my last post in October, this doctor was awesome!  He’s the epitome of what a doctor should be.  I kept the focus of my issues just on the low iron anemia because I didn’t want to go through the same intense GI tests that I’d already had to no avail.

I accepted that hugging the toilet was a way of life, and I just wanted my energy and hair back.

He kept asking different questions, and I kept my answers vague because I only went there for the infusion prescription.  I got annoyed when he asked if I was “regular” (because that’s none of his business, right?), so I rolled my eyes and dismissed the question with, “No, but I’ve been that way for years because I feel swollen inside after I eat most foods.  It’s just how I react with food sensitivities…”

The word “swollen” caught him, and he started writing so fast, his pen was a blur.  He went from ordering a couple of tests to more like fifteen.  When a couple of those results came back irregular, he repeated them then sent me to a specialist when they came back irregular a second time.

So, apparently, I’ve been wrong for years.  The swelling I get after certain foods is not a sensitivity or allergy.  The pain and swelling I get after eating or upon waking the day after I eat a “no-no ingredient” is also not from a sensitivity or allergy.  My dizziness and exhaustion is not necessarily from having low to no nutritional value to my diet.  And my chronic vomiting is not from a sensitivity or allergy.

I was diagnosed with lupus.

I’ve tried to avoid telling people so far because I wasn’t ready to have to deal with the stupid comments from the same jerks that made me the butt of their jokes.  But there were certain people I had to inform, and, yes, it’s left me just as angry and pissed off as before!

Lupus kills!

It can cause excruciating pain in any part of your body.  It can destroy your organs, including robbing you of your eyesight, your hearing, and even your brain!  (I now wonder if that’s why my gallbladder was so filled with infection.)  You often have to avoid the sun with lupus because sunlight can cause a flare.  Stress can cause a flare.  Food can cause a flare.  Colds or infections can cause a flare.  Exhaustion or an injury can cause a flare.

If you’re unaware, lupus is an overactive immune system which causes your immune system to attack everything, even healthy cells and tissues, organs, etc., within your own body.  So just being around someone with a simple head cold means I can get their cold, take 3 or 4 times as long to heal, and possibly even get a worse infection from it, and then of course, deal with a flare.

I always thought I had a poor immune system.  I never realized I actually had an overactive immune system (which results in the same thing: slow healing time, easily infected, etc.).  So everything I’ve done to try to boost my immune system has been counter-productive, actually causing my immune system to work even harder and fight against my own body even more.  {I’ve already dealt with this since my diagnosis, having had bronchitis since Thanksgiving weekend, and I’m just now starting to get over it!}

During a flare, you can expect, pain, inflammation, swelling, vomiting, migraines, hair loss, facial rashes, fatigue, dizziness, memory loss, cognitive skill loss, and organ damage.

It’s scary as hell!

Yes, it is true that between 80% to 90% of people diagnosed with lupus can have a normal lifespan with the appropriate medication and monitoring, and I pray to God that I’m one of them.  But so far, the medicine I’m taking also causes hair loss, muscle loss, dizziness, water retention, brain fog, and it can cause a dreadful sounding condition called “moon face” where your face grows and flattens out from fluid (Thank God I haven’t had that yet – and thankfully it is reversible if you stop taking the medicine).  But I have had increased loss of hair, loss of muscle, a lot of forgetfulness, inability to concentrate, and worse yet, the loss of speech!  It is so frightening to be in the middle of a conversation and know what you want to say, yet not be able to make the words leave your lips!  (Oh, and by the way, I’m still puking regularly, but the doctor says once one of these medicines kicks in some six months from when I started taking it, that should level out.)

The Impact of Lupus of the BodyI now feel stupid and ugly!

I’m angry because I’ve already dealt with a world of shit, and despite that, I’ve still tried my best to refrain from complaining, but I don’t deserve this (not that anyone does!).  I’m pissed because the idiot doctors I saw since 2015 never once sent me for any of these tests so I could get a handle on this sooner.  And I’m scared to death!  Because while there are plenty of people with a long lifespan, there are also plenty of people who die from this awful disease long before they should, and their only solace from it is that they’re finally out of their excruciating pain.

I know I probably sound like a wimpy whiner.  I know many of you probably have lupus and are living just fine.  And I’m sure I’ll “settle in” to my diagnosis soon enough.  I just wish I had  a better “support system” in place to help me deal with the scariness of all the unanswered questions I still have.

That being said, do you know how many of the same assholes who played me off as their joke have had the nerve to tell me, “Well, at least you finally got a diagnosis,” or, “Oh,  my aunt died of that,” or, “Oh, that’s nothing.  I knew someone once with that, and she lived a normal life.”  But the absolute worst has been, “What’s lupus? [Then I explain as above…] Oh, I know what you mean!  Once, I took a medicine that made me lose my hair for almost six weeks, and it drove me crazy…”

Reactions such as this make me want to scream! 

So while these friends of mine are probably well-intentioned, their comments throughout my journey have hurt me no less than when my arch nemesis in grade school used to pick at me relentlessly.

I’m stepping down from my soap box now.  I appreciate your allowing me to vent and kick and scream and cry on your shoulder today.  That being said, now that I’ve gotten it all out, I hope to be able to, in true Rachel fashion, pick myself up, dust myself off, and get on with my life and the act of living with this diagnosis only being a little hiccup.  I’ll definitely appreciate each and every encounter much more as I walk my journey.  When I next see my doctor (in February), I’ll get tested to see if it’s one of the medications or the disease itself that’s causing my recent brain problems, so I’d appreciate your prayers and good vibes until that time.  And I’ll keep you posted as I rearrange my bucket list and hope to have some wonderful adventures.

Let’s talk:  Have you ever received scary news from the doctor?  How did you cope?  How would you deal with people who joke at your expense to the point of being cruel or who blow off your ordeal?

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Send In the Clowns

Have you ever met anyone who was afraid of clowns?  If that someone is you, you might want to skip today’s post.  Now don’t be scared. This is only fiction…

“SEND IN THE CLOWNS”
By: Rachel A. Carrera

Marlee giggled as she glanced at her husband.  “I can’t believe you, Steve.  It seems like every time the circus comes to town, you get injured.  You’re not one of those people who are afraid of clowns or something, are you?”

Steve blushed and averted her gaze.  “Just hurry up, would ya?  My back is killing me.”

“I’m driving as fast as I can.  We don’t want to get a ticket.  So, really, what’s up with you and the circus?  This isn’t your way of getting out of going with us, is it?  Three years ago when the kids wanted to go, you broke your ankle.  Two years ago, you came down with strep throat.  Last year, you got in a car accident and sprained your neck.  And today, you fell down the stairs and injured your back.  What gives?”

He sighed and tensed his muscles.  “I’m sorry, Babe.  I don’t feel like talking about it right now.  My back hurts too much.  I’ll tell you someday.  I promise.”

She rested her hand on his knee.  “Alright, Sweetie.  Look, here we are…”

*     *     *

Dr. Haskell helped Steve to the examination table then gently grabbed Marlee’s elbow.  “Mrs. Chambers, why don’t you go have a seat in the waiting room.  I’d like to talk to Steve alone.”

She bit her lip as her eyes darted between Steve and the doctor.  “Oh.  Okay.  Good luck, Honey.”  She kissed her husband’s cheek and reluctantly left.

As the door closed, the doctor turned to Steve.  “So, Steve, every year when the circus comes to town, you end up here in my office.  Marlee seems to think it’s some psychosomatic ploy to get out of going.  Do you want to talk about it?”  He gently manipulated Steve’s back as he spoke.

Steve blushed then winced as the doctor pressed on his spine.  “Promise you won’t laugh?”

“Sure.  I promise.”

“Well, it’s not like I’m getting injured on purpose.  But the reason it keeps happening…  Well, it scares the shit out of me.”  The color drained from his face as he sat up and hung his legs over the edge of the table.

Dr. Haskell took a seat next to him and took a pen from his pocket.  “Okay.  Well, tell me what it is.”

Steve studied the doctor’s eyes then slowly released his breath before he spoke.  “When I was a kid, my folks took my brother and me to the circus.  Shortly after we got there, my parents ran into some friends of theirs and started talking.  So, my brother and I went to go look at the animals.  We snuck around a back gate, and there was this elephant trainer who was beating one of the elephants with a whip.  It made me so angry that I jumped out from where we were hiding, and I shook my fist and yelled at the guy to stop it.  Well, I guess I surprised him, because he spun around.  And when he did, the elephant bucked up on its back legs and came down on the trainer and killed him instantly.  It… it was quite horrific.  He came squirting out of both ends, if you know what I mean.”

“What?  Oh, damn!”

“Yep.  Some men rushed over, and they had to shoot the elephant.  It gave me nightmares for weeks.  After that, I’ve just always had the feeling that I’m gonna die at the circus.  I don’t know why.  In fact, ever since then, I’ve had a recurring dream that I’m at a circus and killed.”

Dr. Haskell furrowed his brow.  “That’s dreadful.  How do you die in the dream?  Maybe if you know what it is, you can go to the circus, then you can face your fear and get past this.”

Steve shook his head.  “That’s just it.  Every time I have the dream, I die a different way.  Sometimes, I fall off the tightrope.  Sometimes, I get eaten by a tiger.  Sometimes, the circus tent comes crashing down on top of me and smothers me.  And sometimes, the sword swallower picks me to be his assistant.  Then before I know it, he jams a sword down my throat, and I die.  I know it sounds stupid.  And I really do want to go with Marlee and the kids.  But every time these accidents happen, they just affirm my fear that the circus really is gonna kill me.  Please don’t tell my wife.  She’d make a big deal out of it and probably send me to see a shrink.”

Dr. Haskell chuckled as he wrote on a prescription pad.  “Alright.  Consider it forgotten.  Right now, I’d like to get some film on this back of yours…”

*     *     *

Two days later, Marlee sat beside Steve’s hospital bed.  “I’m sorry you couldn’t go to the circus with us, Hon.  The kids had a blast.  Does your back still hurt just as much?”

Steve winced and forced a smile.  “No, it’s feeling a little better.  The doctor saw me this morning and said I can probably get out of here tomorrow.  Thankfully, there was no permanent damage to the discs.  He said that you should plan on waiting on me hand and foot while I lie in bed and tell you what I want for at least a month while I recuperate.”

Her eyes lit up, and her jaw playfully dropped open.  “Oh, he did, did he?”  She laughed.

He chuckled.  “No, seriously he said I need to take it easy for a couple more days, but that I should be as good as new by the weekend.”

She stood and ran her hand up his chest as she kissed him passionately.  “Well, I don’t mind waiting on you for that long.  How about if I go get you some lunch?  This hospital food looks disgusting.”

He smiled adoringly and grabbed her hand.  “Thanks, Baby.  You’re the best.”

She ran her fingers through her hair.  “I love you, Honey.”

“I love you, too, Babe.  To the moon and back.”

*     *     *

Friday night, Marlee carried dinner to the dining room table.  “Alright, kids.  Your daddy’s finally going to be able to get out of bed and eat dinner with us tonight.  I want you all on your best behavior.  Mikey, you go turn off the television.  Jason, you put the dog on the back porch.  And, Ashley, you go tell Daddy that dinner is ready.  Then I want you all to wash your hands and come sit down quietly.”

A few minutes later, everyone was seated around the table.  Steve smoothed Ashley’s long hair then winked at Marlee.  “Smells good, Babe.  I’m starved.”

Ashley beamed.  “Daddy, after dinner, we’re gonna put on a show for you!”

Steve raised his eyebrows and grinned.  “You are?  Awesome!  I haven’t seen a good show in a long time.”

*     *     *

A couple of hours later, Marlee hugged herself and sobbed as the paramedics rolled Steve out of the house on a stretcher.

In the background, a faint recording of calliope music playing “Entrance of the Gladiators” looped over and over.  A dog with a multi-colored, ruffled collar sat in a hula-hoop and growled at the door.

Ashley wore pink tights and a leotard, and tears streaked her cheeks.

Jason’s face was painted like a clown, and he wore his daddy’s shoes and a pointed paper hat made of newspaper.  His makeup ran as he cried.

Mikey hugged a stuffed monkey, and the paper mustache on his face went crooked as he wiped his nose with his arm.

Marlee’s hands trembled as they covered her mouth.  She blinked her red rimmed eyes at the medic and shook her head.  “I just don’t understand.  Steve just got out of the hospital on Wednesday, and his doctor said he was fine.  He only had a sprained back.  He was feeling better.”

The medic nodded sympathetically and rested his hand on her shoulder.  “I’m very sorry, ma’am.  You’ll have to wait for the autopsy for the official diagnosis.  But your husband appears to have suffered a massive coronary heart attack.  I don’t know what he saw, but from the look on his face, it looks like he was literally scared to death.”

THE END

Time to talk:  Is that the ending you expected?  Are you afraid of clowns?  Would you boycott a circus because of the way they treat animals?  Have you ever had a recurring dream?

The Intruder

The following Throwback Thursday is a true story that happened to my son and me a couple of years ago.

*~*~*~*~*

We were all alone.  Jeremy, our cats, and I were home one afternoon in the heat of the summer.  We hadn’t had rain in weeks, and temperatures were soaring.  The heat here in Florida makes people do crazy things.  No, really; it’s true.  There are numerous scientific studies linking hot temperatures to hot tempers.

We’d already had some strange happenings since we’d moved into this neighborhood.  We’d had a couple of neighbors whose homes were burglarized during their sleep and one that woke up in the middle of the night to come face to face with a criminal in their living room.

I also wasn’t foreign to scary situations myself.  Once, while I was in the midst of moving, I walked into my home just as a burglar was going out the back door.  I thought it was my then-husband until I realized a lot of our stuff was missing and they’d emptied the waterbed into a floor vent and stole the bed!

A different time, I was robbed while I worked at a convenience store, and I ended up stabbing the crook with a steak knife which was how the police ended up catching him when he reported to the hospital.

Another time, I had a window peeper, who again, I thought was the boyfriend I would later marry, until he left a very lewd note and I had to call the police and go to court over the creepy stranger who’d apparently been stalking me!

Even since I lived in this house, I went to take out the garbage and rounded the corner only to come face-to-face with a man who was siphoning the gas from my car.

And a different time in this house, I was taking a shower late at night when I was startled by a camera flash against the window going off and saw someone taking photos of me!

But just because I had experienced scary situations, didn’t prepare me physically or mentally to encounter another one.  In fact, each time something like that happens, I kind of figure that I’ve reached my quota, and the law of averages dictates that it shouldn’t happen again.

No such luck.  As I said, my son and I were home alone with our cats that scalding afternoon.  I was stationed at my computer which is located on my desk in the living room next to the west-facing sliding glass doors.  We have a couch in front of those doors and even if we didn’t, we couldn’t use them anyway because the doors don’t align properly so they’re difficult to open.  And because the sun beats in from the west and makes it at least ten degrees hotter in the living room as well as blindingly bright, we have dark paper over the glass and behind the blinds so the sun can’t get in… and we can’t see out!

Jeremy brought in the mail then decided to take a nap.  As he slept, I sorted through the bills and junk mail, then read the neighborhood association flyer that warned us to be on the lookout for prowlers as another house had been recently robbed.

After reading the mail, I went back to work and was diligently Photoshopping a wedding I’d recently shot.  The television was down low, and I was focused on my work.  I ran into a problem and had to significantly enlarge the photo so I could hand draw a correction to a wardrobe malfunction.  My mind was focused only on my work when I heard the first THUMP!

I bristled.  Someone was trying to get in my back door!  THUMP!  There it was again.  My heart started racing.  THUMP!  Oh, my gosh!  He was trying to get in!  Worse yet, the cats were getting curious and all ran over to the glass door and started making noise.  I willed them to be quiet, but my appeal was moot.

I held my breath and ran to Jeremy’s room and woke him up.  In an urgent whisper, I said, “Someone’s trying to get in!”

He gasped and sat straight up, groggy and disoriented.  “What?”

“SHH!  Someone’s at the back door!  They’re trying to break in here!”

He narrowed his eyes and jumped out of bed.  “I’m gonna kill them!”  He ran past me toward the garage door.

(On a side note, because of my son’s Asperger’s Syndrome, he seldom feels pain.  Because of this, he thinks he’s invincible and never hesitates to stand up to anyone who may be a threat.  He also has no fear that they may have a gun or knife.  And worse yet, he has no fear of consequence of the law if he does something foolish.)

He came back in from the garage carrying a shovel and asked, “Where is he?  I’ll kill him!”

THUMP!  THUMP!

The color drained from my face.

Now he heard it, too.  He spun on his heel and said, “Don’t worry.  I’ll be right back.”  And before I could stop him, he raced out the front door.

My hands flew to my mouth.  I tried to stop him, but he didn’t listen.  I picked up the phone and prepared to dial 911 when all of a sudden I heard Jeremy yell, “Get back here!”

I rushed out the front door to the backyard, and that’s when I saw him.  The intruder was none other than a huge turtle who had apparently crawled out of the dried up pond in our back yard in search for water and kept walking into the glass door and hitting it with his shell!

(Yes, really.)

Talk to me:  Have you ever been scared by something other than what you thought it was?  Would you ever hit an intruder with a shovel?  Would you be more embarrassed to admit to this story on a blog or if you’d have actually called the sheriff out and they found the turtle?