Friendship

Hello, friends!  I had the honor recently of “meeting” a new friend and Bloggyville sister here in cyberspace, named Sandra!

Sandra is an artistic, creative sweetheart, and if you haven’t met her yet, please hop on over to her blog and introduce yourself.

And while you’re there, please take a moment and read the fun questions she asked when she interviewed me.

I’m sure you’ll lover her as much as I do, and please stay on the lookout here, because she’s going to be paying a visit to my little corner of the Blogosphere soon.

Have a great week!

 

Fear of the Unknown

Happy Throwback Thursday, friends.

For today’s throwback, I’m taking a [not so] long walk back to 2018.  The month was October, and one of my Bloggyville sisters, Rhonda Blackhurst, invited me to participate in NaNoWriMo with her.  With all the health issues and pain I had been dealing with, I was taken aback even further when said health issues and pain brought about an entirely different problem – depression.  So, I was truly in a pit of despair when Rhonda’s invitation came, and to be honest, I wasn’t sure if I could physically even commit to writing my name the following month, much less a minimum of 50,000 words.

But Rhonda is a sweetheart, and I wasn’t about to decline her kind invitation.  At the time, while I’d often contemplated joining the ranks of the millions of NaNoWriMo success stories, fear of the unknown, fear of failure, etc., had held me back in the past.  (I had, so far, been able to pen a first draft in a mere month on more than one occasion, but never in a November when life is hectic with thoughts of Thanksgiving, decorating the house, company coming, company staying, etc.  The mere thought of it seemed too stressful to even attempt.)

But now that I had my own personal cheerleader (Thanks, Rhonda!), I knew I just had to make it happen, both for her and for myself.  I had an entire file of story ideas in my arsenal, but as I read through each of them, I feared that if I was unable to complete the challenge, I’d forever ruin a potentially really great book.  My confidence was already waning, and this just shook it more.  I couldn’t risk it.

So, I turned to the recent news headlines that most personally spoke to me and thought What could make a #MeToo story unique?  It was definitely an Aha! Moment when I realized that a Joan of Arc twist would raise eyebrows, and in that moment, I had my story.

During that November, my previously mentioned vitamin deficiency was still undiagnosed, and as the month approached, we got a call from some out-of-towners that they would like to come to Florida and spend the holiday with us.  We were in the middle of a major renovation project that Sister Michelle and I were doing ourselves, and we had to amp things up to be done before the company arrived.  At one point, I became so physically incapacitated that I had to stop the renovation work and literally teach Michelle how to hang and texture drywall from the sidelines while I supervised.

But despite it all, I still managed to write something each and every day of November, and as it turned out, I found that I enjoyed daily writing every bit as much as even more than I ever had!  (As a matter of fact, I don’t foresee a time where I will ever skip another NaNoWriMo again!)  I completed my first NaNoWriMo with 70,900 words under my belt, and by mid-January, wrote “The End” on the first draft which clocked in at 98,000 words.

At any rate, without further ado, I offer you the synopsis of “Under Seraphs’ Wings.”

For years, Rumer has managed to keep the details of her youth a secret from just about everyone except her husband, Cody.  As the #MeToo movement starts then gains momentum, she remains resolute in her silence.

But twenty-nine years after she was brutally gang-raped at a high school party, the Vice President of the United States announces that he has a terminal illness and will be stepping down.  And the President taps one of her attackers to replace the second in command.

Rumer knows she will be risking her career, her family’s safety, and her standing in the community if she comes forward with her story.  After all, it will be difficult enough to admit to the Senate Judicial Committee, not to mention testifying in front of the entire world, that just months prior to her attack, she was institutionalized because she admitted to the wrong person that God talks to her.  But she knows she will lose all credibility if it comes out that God warned her ahead of time that she would be raped – and that she went to the party anyway.

Hold on tight as you travel with Rumer through the twists and turns of this psychological thriller, and watch justice unfold as the assailant becomes the prey in UNDER SERAPHS’ WINGS.

Let’s talk: Have you ever done something for the sole purpose of not letting someone else down, then found that you actually enjoyed it more than you ever imagined you would?   Have you ever let fear of the unknown keep from you doing something that you later found out you enjoyed?  Do you participate in NaNoWriMo?

Honor and the Changeling

Hello again, dear friends.

Over the last couple of weeks, I’ve been recapping some of the crazy-extreme events of my past year, but there were also some really amazing moments.

To start, an essay I wrote won an Honorable Mention in the Writer’s Digest’s 88th Annual Writing Competition.  In the past, while I haven’t entered every year, each year that I did enter, I submitted a fictional short story.  This time, however, I was pre-occupied with other fiction to stop and write a story that would be limited by how many words I could use.  So, I wrote an essay on the families who had been in the news for being separated at the border.  I used the theme of all the Ancestry and 23-and-Me commercials we see so frequently offering to tell us where our family roots were planted, then did a compare and contrast with the border situation.

While I would have, of course, preferred to place in the top ten “place” winners for the essay category, I’m definitely not complaining about being in the top fifty (forty of whom “win” in name only) category, or the Honorable Mention.  After all, being considered “honorable” is nothing to sneeze at.

But my real proud moment accomplishment of 2019 was participating in my second NaNoWriMo and writing “The Changeling of the Third Reich.”  I first had the idea for this story in February, 2014.  At the time, I was wrapped up in so many other projects, I set this one aside.  It was my favorite story idea to date, and I wanted to give it all the research and attention I knew it would take to make the idea really come to life.

As time marched on, life happened, and the day job happened, and then Gastroparesis, and then Lupus happened, and I lost hope that my great idea would ever come to pass.  In September, Sister Michelle’s sister was placed in hospice for her metastatic triple negative breast cancer, and Michelle and I planned a trip up to see her.  As we planned our trip, we tossed around the idea of stopping in D.C. on our way home to unwind.  While there, we would visit the National Holocaust Museum (which I haven’t seen since 2001, and I highly recommend), and I could research some more of the in-depth parts of my story.

That didn’t happen.  We got the call a few days earlier than we had planned our visit and were told to “get here now!”  There were no flights the rest of the day, so we dropped everything and took off driving.  Susan passed away before we got there, while we were only five states away.  (Damn Cancer.)  I did all the driving and my knee, ankle, and foot blew up from being in the car for so long.  (It’s about a 16-hour drive if you can take it all in one day.)  (Damn Lupus.)  Family stuff happened, I felt like crap, Michelle was distraught, yada, yada, yada, and I just wanted to be home.

In October, Sister Michelle and I decided to take a girl’s day, and we visited the much-closer-to-home Florida Holocaust Museum in St. Pete.  It was very negligible in the way of tangible things to see (compared to the National Holocaust Museum), however, it had one amazing employee who made the visit worthwhile.  He was an older gentleman and from Europe, so he had seen so much of the actual concentration camp sites and other such museums in person, plus because of his age, he remembered a lot of stuff first-hand from when he was a boy.  An added bonus was that he had met so many holocaust survivors while he worked there that he then had their stories to share, too.  The tour was supposed to last an hour, but it was more like two and a half, and he answered every question any of us had, and I actually learned a lot that I was surprised that I didn’t already know.

This visit was exactly the push I needed to declare “The Changeling of the Third Reich” as my NaNoWriMo project. I finished with 81,100 words under my belt and finished the first draft a week later with 93,500 words.

The funny thing was, in waiting so long between the time I originally had the idea and when I wrote the first draft, not only has (of course) my writing become exceedingly better, but I’ve also ventured away from the super dark endings I used to envision, and made it a bit lighter, though still as psychologically thrilling.  Meaning – I’m very glad I was forced to wait to write this so I could do it justice.  Anyhoozle, without further ado, I submit for your approval, the following synopsis:

The year is 1968, and the Vietnam War is in full swing.  Dr. Bridget Castle, a neurosurgeon in Boston, handles the victims of anti-war protests, the casualties of war, and being a woman in a man’s profession with ease.  Her husband, her parents, and her patients all love and respect her, but her tight-knit world is in danger of unraveling when someone from her past shows up and threatens to expose her closest-held secret: That she is a Concentration Camp survivor.

For more than twenty-three years, Bridget has walked in the shoes of a girl killed in the Blitz, blurring the line of when her own identity as a German Jew ended and when she assumed the role of changeling.  If not for her childhood diary to remind her of all she endured, she would be completely successful in taking on the memories of the girl she replaced.  But when a patient from Germany is placed in her care, she finds herself unable to deny her past any longer.

Hold on tight as you travel with Bridget through the twists and turns of this psychological thriller, and watch her claim retribution as the former prisoner now holds the key in THE CHANGELING OF THE THIRD REICH.

Let’s talk:  Have you ever planned something so detailed, you had it mapped out to the letter and then life happened and you had to reconfigure everything on a moment’s notice?  Have you ever visited any holocaust museum?  For the writers, how often do you plan a story and set it in stone, then start writing and take it in a completely different direction?

I Survived the Medical Medieval Torture Chamber!

Greetings, friends!  Here’s to a (belated) Happy New Year in 2020 and (very belated) hopes that your 2019 was a good one.  I’m afraid I’ve been off the grid a lot longer than I intended.  During my absence from Bloggyville, I’ve been dealing with various aspects of life including more health (Lupus and Gastroparesis) complications, several deaths of various friends and family members, and emergency house repairs (and appliance replacements).  During my time away, besides the day job, I’ve also opened a homemade soap store, written two new manuscripts, created more art for the house, updated some backdoor stuff on my blog, and otherwise kept myself busy with reading and other artsy projects which I’ll elaborate on in a future post.

However, in the interest of not going all over the map in a single post, today I would like to share the details of just one of my recent adventures.  (Those of you who have been with me a while know I have the strangest things happen to me and how I like to “at least get a funny story” out of the ordeal.)  WARNING: If you are reading this in a public area, be on notice that this will likely make you laugh out loud.  (At least it hasn’t failed to make any of my personal audiences snort with amusement, so if you’re not laughing by the time you reach the end, you’re taking it way too seriously.)  [Also, apologies in advance to the men who may find this a little too personal – I know the ladies will completely “get it.”]

Several months ago, I started experiencing a pain under my left arm.  I figured it was a swollen lymph node, and that it would probably go away sooner than later.  By the time I next saw my rheumatologist for my Lupus, it was still sore and had grown in size, so I told my doctor that it felt like a doorknob in my armpit.  (Of course, I meant in reference to size – not an actual doorknob.)  So, you can probably already guess that she sent me for a mammogram.

Meanwhile, my sister, Michelle, was having mammary issues of her own and had to get a breast biopsy.  After my mammogram, they found something suspicious, so I, too, was scheduled for a biopsy.  (It may be a good time to note that Michelle and I go to different medical clinics, so at no time did we have any of the same doctors.)  It was around this same time that I was also dealing with an intense amount of shoulder pain from my Lupus.  I regularly get steroid shots in each shoulder, but I can only get them four times per year, and it was too soon to get new injections.  After Michelle’s biopsy, she came home and told me exactly what to expect:  She said they had her lie on her side with one arm raised over her head.  Then they injected her with a local anesthetic, made a small incision, removed several pieces of tissue, inserted a titanium clip inside to know where the tissue was taken, taped up the incision, then – and here comes the bad part – did another mammogram to make sure the clip was in place.

Ladies, even if you’ve never had a breast biopsy, you’re still probably cringing by now, just imagining the pain of a mammogram following an incision and the digging around inside to collect tissue specimens.  Men, if you don’t believe us, go out to the tool bench, put your junk in a vice, then close it all the way.  Wait!  I forgot the part where before you start, you should raise the vice to about six inches higher than your junk will reach, mount it on the wall, then proceed to insert your junk and close the vice.  That’s how a mammogram works… You have to reach around and hold a handle at the back of the machine that’s about three inches past your fingertips, and then they clamp your puppy in until it’s flatter than a pancake and raise the machine until you’re standing on your tippy-toes, and just when you think it can’t get any worse, they raise the machine once more and tell you to hold your breath while they get the first image.  Then after they get the image, just when you think sweet relief might be in your future, they – while keeping your boob smashed securely – rotate the machine sideways to the point that you think it might just rip your breast from your torso.  And then they do the other side.

So, Michelle’s report that I could look forward to this after the actual procedure didn’t give me much hope that it would be a pleasant experience.  However, the part that actually seemed more excruciating to me was that I would have to lie still with my arm raised over my head for half an hour.  (With my shoulders the way they were, I could barely raise my arms for the time it took to brush my own hair, much less for an extended period like that.)

A few days later, I was all smiles and bravado as I walked into the women’s clinic.  They offered me counselling before-hand, but I declined, feeling fully knowledgeable of what I could expect in my procedure.  I changed into a paper gown and wrapped a sheet around me as I waited to be called to the surgical area.  As I followed the nurse, a door opened and I saw a well-lit room with a comfortable-enough looking bed and a tray of surgical tools.  And then we kept walking.  We passed a couple of more similar rooms and then she escorted me into a large, dark room with a table with a hole in it and some steps leading up to it, that can best be described as some medieval type of torture chamber device.  (Seriously, in retrospect, I would have rather been hit in the head with one of those sticks with the spiky ball at the end of a chain!)  There was a huge scary-looking machine that put out this high-pitched hum, and nothing of comfort in the room except a boring painting of a farm on the wall near the table.

“Okay, climb on up there, and lie on your stomach.  Place your left breast in the hole and raise both arms over your head,” the nurse instructed.

“Wait, what?”  This was not what I had envisioned.

As I climbed up the steps and got situated on the table with my left puppy in the hole, I was instructed to look to the right and place both arms over my head.  So, there I was, staring at my own shoulder and the dumb farm painting and feeling very much like Ol’ Bessie there in the barn being hooked up to a milking machine, when all of a sudden, this clamp thing closed on my free-hanging boob and tightened.  A lot.  And then it tightened some more.  And some more.  And then, I’m not sure, but I think it twisted the darn thing in a complete circle.  Or two.  And that was before any local anesthetic!

And then the nurse raised the table.  By the sheer force of the clamp, my entire upper body was glued to the table.  Seriously.  If I’d have sneezed, I think I would have literally ripped my nipple off.  As the table rose, I felt very much like the unwilling volunteer of a creepy magician’s act.  The stupid farm sank down below my line of vision, and I could see where the wall met the ceiling.  And out of the corner of my eye, I could make out what looked to be a trapezoidal lighted thing that I could only imagine was some sort of FIRE indicator.

“Okay, you’re doing great.  Now, let me go get the doctor,” the nurse said.

You mean the doctor isn’t even here yet?  I was ready to be done, and the doctor was, as it turned out, busy and would be there in a few minutes!   The nurse left again after she told me of the doctor’s delay, and all I could think was: If the building catches on fire, I’m screwed!  Seriously.  I imagined how many different ways things could play out, and in every scenario, I was dead and the medical examiner and his buddies were laughing at the corpse with one extremely long hooter!  By the time I imagined being taxidermized for a freak show and having people line up to take selfies with the Amazing Long Booby Lady, the doctor came into the room.  Of course, it could have been the janitor for all I knew, because I was pinned in place staring at the wall.

At first, no one said a word, and then I felt the machine tighten around my breast, and I think a little of my intestines got twisted up in there, because at that point, I could feel the clamp pinch all the way down to my toes.  Then someone said something.  But not to me.  Turns out there were several men and a couple of women down there hanging around under my aching breast.  I think they were playing jump rope with it or something because they sounded as if they were having a fine time chatting among themselves; meanwhile no one said a word to me about anything that was going on.  The good news was by this time, my sore shoulders were the last thing on my mind.

About 9 hours later, they finished collecting all the samples they needed, and the nurse was left alone with me.  She said as soon as they checked the samples on an x-ray or some other machine, they would be able to unclamp me and let me down.  I was certain it was a little after midnight when she let me down and released my three-foot long breast from its prison, and that’s when I got to see the clock and only 40 minutes had passed.  She had to tape and bandage my poor stretchy, black and blue booby, and then I got to sling it over my shoulder and go get the afore-dreaded mammogram to check for the titanium clip.  Of course, by this time, that mammogram was nothing compared to what I’d just been through, so I didn’t complain.

To conclude, both Sister Michelle and I ended up with negative test results, so it’ll be another few months before either of us have to endure that kind of procedure torture again.  I’m still attempting to convince my sister to go see my doctor next time [insert wicked laugh track here], but she’s getting even with me by goading me to “tell your stretchy-booby story again” each time we encounter someone else who hasn’t yet heard it. (So much for my own modesty.)  At any rate, I’ve got a lot of other (less personal) stories to share, so I’ll (really) be back soon.

Let’s talk:  Have you ever injured your shoulder so that you couldn’t lift your arm?  Have you ever been pinned in one place for more than a half-hour?  Have you ever seen a modern medieval torture device?  (Wait, maybe I don’t want to know the answer to that one.)  

P.S. Even though I am making light of my experience with a life-saving diagnostic, I am not making light of the diagnostic test itself.  I’m fully aware of the seriousness of breast cancer… One of the people I mentioned who was lost in my absence was Sister Michelle’s sister who, after years of fighting, lost her battle to triple negative metastatic breast cancer, leaving a husband, two children, and a family who loved her in its wake.  

 

#StereotacticBreastBiopsy #LupusComplications #Life

The Storm

Greetings, Friends!

I hope you’re all doing well! According to my most recent blood tests a couple of weeks ago, I’m still in an active flare that has been going on since “at least September” according to my rheumatologist. She’s had me on a couple of rounds of major steroids on top of the daily steroids I already take, and they seem to be helping somewhat. At least my sed rate number is getting lower and closer to “normal” (which means less inflammation).

Since May is Lupus Awareness Month, I wanted to share a quick bit of info as well as a poem I wrote which will explain what I’ve been up to behind the scenes (besides completely overhauling my blog — Please feel free to take a look around and tell me what you think of all the changes and new stuff.)…

Lupus Awareness Wolf

Lupus is Latin for wolf. In the 18th century when lupus was just starting to be recognized as a disease, it was thought that it was caused by the bite of a wolf because of the distinctive rash characteristic of lupus. (Once full-blown, the butterfly-shaped rash heals from the inside out, leaving a bite-like mark.)

“THE STORM”
By: Rachel Carrera

Streaks of light stagger across ebony space,
Jagged lightning followed by the crash of thunder,
The roaring, rolling, rumbling sounds race;
In their wake, remnants of life split asunder.

The storm that rages often spins out of control,
It’s a fiery, ferocious, fierce beast,
A tsunami that crashes and crushes the shore
And demands to be free and unleashed.

All signs of life seem to be gone from within
As the cyclone swirls showing no mercy,
Causing an emotional collapse and tailspin,
The result of internal controversy.

This storm that I speak of is not in the sky
But within the confines of my person;
The disease that ravages me can’t justify
Why it causes my symptoms to worsen.

Whoever said once that life is unfair
Really did quite a disservice
To all who suffer this hellish nightmare;
I can’t think of one soul who deserves this.

Just getting through a day is so stressful
And feels like I’ve been fighting a war,
And looking in the mirror has now become dreadful;
I don’t recognize my own face anymore!

The pain with each step shoots fire through my limbs
As I place one foot in front of the other;
And the throbbing that causes my head to spin
Leaves little hope that I’ll ever recover.

But the pain is nothing compared to the dread
Of the horror that could be in my future,
Of organ failure causing my life to ebb,
And disfigurement from my abuser.

I throw up each day, though I never lose weight,
And my hair falls out by the handful;
I just want this storm to not be my cruel fate
And not extinguish my hope’s flickering candle.

This beast steals my sleep so I can’t even rest
While this battle continues inside;
My immune system is now in a state of protest,
Like an avalanche causing a landslide.

Even the slightest cold now kicks my tail
As germs stay with me like a cloud cover;
A sniffle, a cough causes a vicious gale
And I take weeks, sometimes months to recover.

I haven’t even mentioned the rash that I get
From where my disease gets its name;
It resembles a wolf’s bite, not letting me forget
To add something else to my shame.

But the thing that propels me through each passing day
Is knowing so many more have it worse,
And the lost prospect of their illnesses going away
Makes them feel like victims of a curse.

Their neuroblastoma, their Alzheimer’s, and
Their Amyotrophic Lateral Sclerosis,
Their aortic aneurysms, swollen lymph glands,
Their Huntington’s and cystic fibrosis,

Their cancers, their famine, their anguish and sorrow
Make my lupus feel suddenly diminished;
If they can dare dream of waking up tomorrow,
Then maybe my life’s not yet finished.

So I hold tight to my flickering hope’s candle in the wind
As I seek out a ray of bright sunshine;
And far in the distance and around the bend,
I can almost make out a dark coastline,

Where the waves come crashing as they roll on the beach
As they beat on the shore with their fury;
Suddenly, the horizon feels almost within reach,
So I force my broken body to hurry.

When I get to the dark shore, the sun starts to rise,
And the waves relax some of their mad thunder;
The faint glint of sunlight that now shines in my eyes
Gives me hope that I won’t be pulled under.

A slight brightness follows the gloomy eclipse
As the downpour now wanes to a drizzle;
No longer does life seem like an Apocalypse;
It renews hope that my symptoms might fizzle.

Despite my sore muscles and pain in my bones,
My frequent fevers and inflammation,
And the many medicines that mess up my hormones
Yet promise to be my salvation,

I am told by my doctor when this flare goes away
That I’ll soon have more good days than dreadful;
And blue skies will at that time replace all the grey,
And I can finally slay this cruel devil.

So I’ll take cover now as I wait out this monsoon,
Keep my vigil even if I collapse,
Keep my eye on the sunlight instead of the moon
And have faith that the squall will elapse.

*~*~*~*~*

So let’s talk: Did you know where lupus got its name? Did you notice I’ve been working behind the scenes to revamp my blog? What have you been doing?

#LupusAwareness

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?

East Meets West

Greetings, Friends,

As you know, I’ve had more than my fair share of health issues for the last several months.  I vomited daily for almost a year.  I had a severely infected gallbladder that had to be removed.  I had a calcified gallstone dropped inside me during surgery which caused some horrific aftermath.  I had every test known to man to find the root cause of my digestive issues.  And I had some of the rudest, most unhelpful doctors I’ve ever had the displeasure of treating with in my life.

I’m now happy to report that I finally have some answers.  I was diagnosed with idiopathic gastroparesis.  Of course idiopathic means there’s no known cause.  For those of you who don’t know what gastroparesis is, it mostly occurs in people with diabetes, which I do not have.  (Hence, why it’s idiopathic in me.)  Basically, it’s when a nerve in your gut is damaged and your digestive system is sort of “paralyzed.”  (It’s actually more complicated than that, but essentially, that’s the short version of what’s going on.)  (Also, although it’s technically idiopathic – or of unknown origin — my personal observance tells me it’s stress induced.  My whole life, I’ve tended to get physically ill when under extreme stress.)

(WARNING: If you have a weak stomach, skip this paragraph.)  So essentially for the past year, when I’d eat, I would not get that queasy, nauseous feeling like when you have a stomach bug.  Rather, the food would sit like a hard lump in my stomach for hours, causing a lot of pain unless I made myself throw it up.  So, since vomiting was the only thing that felt better, I had to make myself puke after most meals.  And it would come back in “layers.”  i.e., if I ate, for example, a grilled cheese sandwich, French fries with ketchup, and chocolate pudding, I’d first throw up the pudding, then the ketchup, then the bread, then the cheese, then the potatoes.  And no matter how long after the meal, the food was always recognizable as whatever I’d eaten, even if it was the next day.

(The weak stomached can continue reading now.)  The doctor who diagnosed me really gave me no advice other than to eat several small meals rather than three big meals, puree my food or eat baby food or have liquid shake meals when possible, and avoid fat and fiber.  However, because I have so many “idiopathic food allergy symptoms” (meaning I have food allergy symptoms even though the blood tests say I’m not technically allergic) likely because food was sitting undigested in my gut for so long, I can’t even have much of a variety in the first place.

So, I was left to research my condition on my own.  Now normally, I’m a believer in Western medicine.  But there was no known Western help for me that I could find in my research.  However, what I did find was in the Eastern medicine world.  Basically, I deduced that I have a condition only known in the Eastern medicine world known as hypochlorhydria, which means that my body doesn’t produce (enough if any) stomach acid.  (Quite coincidentally, the symptoms for too little stomach acid are almost identical to those of too much stomach acid.)  Having little to no stomach acid means that my food can’t digest, and therefore, it literally sits in my gut until it rots or until I vomit.  (I still have no idea if the hypochlorhydria caused the gastroparesis or the other way around, but there’s definitely a connection, at least in me.)

gastroparesis cureSo the Eastern “cure” for this condition is this magic pill called Betaine Hydrochloride with Pepsin, which is basically artificial stomach acid coupled with a digestive enzyme (the Pepsin).  A person should start off taking one with each meal.  If, after the meal, your gut burns like hell, then you don’t have that condition, and you should not take any more pills.  But in my case, I was to then work up to increasing the pills by one per meal each week until I’m digesting well.  I’m now up to eight pills per meal.  But even though that’s a lot of pills (and I HATE swallowing pills!), I’m so happy to not be hugging the toilet every night.  I still have to puke roughly two or three times a month, but being as I was at that much per day, I’m not complaining in the least.  (And the few times a month this has happened lately, it’s been when I’ve been at the end of my rope with stress.)  Because I’m at least for the most part able to eat and digest food again, my B12 and iron deficiency anemia has gone away, my color is back, my hair isn’t falling out like it was, my vision has improved, and I’m not nearly as tired as I was.  I still don’t feel one hundred percent yet, and there are still a ton of foods I still have to avoid or else I swell, but I feel incredible compared to how I felt earlier this year when I was at death’s door.

I also want to thank you all for all your sweet emails to me checking on me and for your prayers, kind thoughts, and warm wishes.  Your concern means so much to me.  I love and miss you guys, my blogging family, and I hope to be able to return to blogging regularly soon!

So, that’s what’s been going on with me… Now tell me, what’s new with YOU?