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?

Waiting Game and Writing

Hello, friends,

Since my last check-in, I had the blood work I mentioned.  I expected my iron to be low and possibly my B-12.  But I never expected what happened instead…  My “sed rate” (short for erythrocyte sedimentation rate, also known as ESR) came back high.  It’s supposed to be between 0 and 20, and mine was 125.  (Zoinks!)

bariumSoooo… needless to say, my doctor ordered a bunch of extra tests, more blood work, a CAT scan (hence the nasty barium you see here!), an x-ray, and other stuff.  The x-ray already came back fine.  The second sed rate test came back elevated again.  And I don’t yet know the ANA and Rheumatoid Factor test results, nor the CAT scan results.  As far as I know, I have to go back again next week for yet another sed rate test.  I don’t know what he’ll order next depending on the other results.  But until I know something, I’m still plugging away trying to make it through the day without puking or needing a nap!  I’ll keep you posted as I learn anything.

In other news… Since I’ve been too exhausted to spend much time at the computer writing anything new, I’ve been taking some of my printed manuscripts to bed and trying to commit to editing at least a few pages each night.  I believe I’ve made it through all the obvious typos, misspellings, bad or missing punctuation, etc.  (Printing it out really makes quite a difference in catching these little blunders as far as not seeing the same thing as my eyes have passed over on the computer screen so many times before.)

I’ve let a few people (including a few of you) read some of these manuscripts before, and many of you had some remarkable suggestions.  But there was one manuscript – The Prison – which I’ve only let a couple of people even see.  It was the first one I wrote, and I wrote it before I learned and became obsessed with “The Rules.”  You may remember my frustrations when my exact-word orientation from my Autism got in the way of “just writing” once I learned there were so many dos and don’ts.  I got so hung up on The Rules, that I wasn’t able to “just write” anymore, and as I’ve been re-reading, I wince as I see how much I held back.

Don’t get me wrong, I (now) think The Rules are a good thing (for the most part), though my Autistic brain still wishes they were called “The Suggestions” instead.  What I realized was that my first manuscript had so much more “feeling” behind it and felt less “mechanical” than the others.  When I asked myself why, I came to a conclusion:  I used a lot more similes and strong descriptions in The Prison than I used in my other works.   The sad thing is, I know exactly why I did this as well…  I got so stuck on “Show Don’t Tell” (of The Rules), that I was afraid I was “telling” too much, so I deleted almost all instances of these types of phrases and sentences in my subsequent work.

Unfortunately, I think a lot of my problem was due to an article I read that instructed me:  “In order to show and not tell, you have to write as if you’re describing what’s happening to a blind person.”  So, I did just that.  And in doing so, I added a lot of stage direction (a LOT of stage direction!) as well as clumsy description that sounded as if I were telling the story of cyborgs rather than people!

For example:  After learning The Rules and allowing myself to become obsessed with adhering to them — or else!–, I wrote:

Neil’s face turned scarlet as he jumped to his feet.  His chair fell to the floor, and he narrowed his eyes.  “What did you do?” 

Rivers grabbed her arm as hot soup splattered on her.  Tears formed in her eyes.  “I’m sorry.”

He grabbed her shoulders tightly and put his face close to hers, then without saying a word, he released her and spun on his heel.

*~*~*~*~*

Ugh!  Isn’t that just awful?  It feels so cold and mechanical.  I’m embarrassed to think I actually allowed people to read my work like that!

Now, I’ve changed a lot of sterile scenes like that to be something more like this:

Neil jumped to his feet.  His face was flaming, and he appeared to be six inches taller than he already was. His eyes penetrated Rivers’ as he glared at her with repugnance.  “What did you do?” 

Rivers’ voice caught in her throat, and she began to tremble. “I’m sorry,” she said under her breath.  Tears streamed like twin rivulets down her cheeks as she tried to ignore the hot soup that splattered on her arm.

He huffed and grabbed her shoulders, digging his fingers into her flesh.  He pulled her so close, she could feel his hot breath on her face. 

She attempted to explain, but her voice caught in her throat like a lump of clay suffocating her.  Before she could speak, he grimaced and released her as if she had the plague.

*~*~*~*~*

Isn’t that much better?  The sad thing is, that’s roughly how I wrote in the first place, (though I admit I had a bad habit of changing points of view as well as making the scenes too short and choppy…  Those are some of The Rules that are actually a good idea to follow.)  So, as I’ve been able, I’ve been slowly making the changes to a lot of these old works and trying to get them in their best possible shape once and for all.

 Anyway, that’s what I’ve up to lately, friends.  What about YOU?

This ‘n That ‘n Spoke Too Soon…

Greetings, my friends,

My, what a busy September it’s been…

I guess my first news to report is that when I reported last month that I’d discovered a “magic pill” that helped so much with my gastroparesis, I apparently rejoiced prematurely.  For the last few weeks, despite taking the HCL, I’ve been back to vomiting almost daily.  I also found that even though the HCL is supposed to help digest food and move it along out of the stomach, I’m back to being able to eat just about nothing except grilled cheese sandwiches without feeling incredibly sick.  I have noticed that over the past few weeks, I’ve also been under a more-than-usual amount of stress, so as I reported before, I definitely believe there’s a direct correlation between stress and the gastroparesis.

So, in addition to toilet hugging being my pastime these past few weeks, I’ve been freezing despite the upper 90+ degree weather, I’ve been exhausted, and my hair’s been falling out again.  However, despite these annoying little things, it didn’t occur to me until last week that they are actually “symptoms” and put together, they likely mean I’m anemic again.  So, I started back on the iron and B-12, and I have an appointment for bloodwork coming soon.  My hope is that once the stress goes, the gastroparesis will flee, I’ll stop puking, and I’ll be able to eat a better variety of foods and get nutrients so these things will stop happening.

In other news, I entered a caption contest for The New Yorker, but I was not selected as a finalist.  However, the finalists that were selected were all really good, so I don’t mind losing to them.

I ran across a Halloween decoration a couple of weeks ago that was similar to a Christmas village… Only this wasn’t a village, per se, but more like an interactive creepy carnival.  Well, needless to say, the carnival theme reminded me a lot of the “Zombiefest” setting for my book Thou Shalt Not, so between my sister and a couple of friends at work, I was persuaded to buy this carnival and make it my own.  I can’t find a great video that shows everything, but this one isn’t too bad:

To tell the truth, I didn’t actually plan on spending that much, or on even owning so many Halloween decorations in the first place, but once I went to the store to price them, it turned out they were already picked over since I visited the store the week before, so I had to have them at that point.  Then, when I realized the store I was in didn’t have everything anymore, I then made it my mission to drive all over Central Florida until I had successfully collected every available piece.  And now, to justify spending WAY too much money on a decoration I’ll likely only be able to display a couple of days because if left up any longer, my cats will surely destroy it, I’m afraid I’m going to have to host a Halloween party so that people can see it.  If you think you’ll be in Florida near the end of October, shoot me an email, and I’ll send you an invitation. (I’ll post photos once I have it all set up.)  If anyone has any favorite Halloween recipes to share with me, I’d sure appreciate it.

I entered four short stories in a Writer’s Digest contest earlier this year, and I was notified that one of them received an Honorable Mention.  Woo Hoo!  No, I wasn’t a finalist, but that was still pretty cool news.  Yay, Team Rachel!

Since my last post entitled “The Raven,” I’ve actually taken on the project of trying to memorize Edgar Allan Poe’s The Raven.  So far, I’ve learned 11 out of 18 stanzas.  I’ll keep you posted on my progress.

And finally, I wrote an opening sentence in a Writer’s Digest contest where you are to write one opening sentence only based on a photo that they give, and my sentence was selected as a finalist in that contest.  Squeeeeeee!  And THIS is where I could use YOUR help…

If you’re registered at the Writer’s Digest site, would you please vote for me in the comments section?  (Mine is Sentence “B”:  b. Paralyzed with fear, Cole didn’t even have to look over his shoulder to know the kayak that’d been following him for miles was empty.)  The link to the contest is here: http://www.writersdigest.com/your-story-competition/your-story-76-submit-now

If you’re not registered at the Writer’s Digest site, would you please send an email to: YourStoryContest@fwcommunity.com with “Your Story 76 Vote” in the subject line and write SENTENCE B in the body of the email?

Thank you so much!  I’m forever grateful to those of you who vote.

So tell me… How do YOU celebrate Halloween?

The Raven

While I was dealing with all the health issues I had this year, I was so exhausted at times that it was all I could do to make it to work.  Even reading was too much for me to handle.  Needless to say, I haven’t been as productive as I’d have liked, at least until the past couple of weeks.  However, to try to keep my writing mojo going, and at least stay in the mindset of writing, editing, reading, creating, etc., I redecorated my writing desk area with a writerly theme in mind.  (Actually, I overhauled my entire living room / dining room with the writerly theme, but I’ll save the rest to show you another time.)

desk

As I’ve shared before, my décor is a late 1950s / early 1960s motif, so I tried to keep that going while adding literary touches.  You’ll note the books on the top shelf include an old school dictionary, thesaurus, and volume library.  (Of course, they also include the “Chicago Manual of Style,” Stephen King’s “On Writing,” and Chuck Sambuchino’s “Guide to Literary Agents.” Though those aren’t vintage, they are good to have around.)

books

My mouse pad as well as my little statuette features The Raven from my favorite guy, Edgar Allan Poe.

nevermore

IMG_0433

My printer is just the best investment ever!  I’ve definitely made use of printing my manuscripts in a different font than I type in then editing the hard copy.  It makes a huge difference seeing your work on paper as opposed to digitally.   This model is reasonably priced on Amazon (more reasonable than I’d have ever imagined), and the laser cartridges are under $30 which is less than I used to pay for ink in my old inkjet!  Better yet, a single cartridge prints around ten reams of paper with no quality problems whatsoever.

laser printer

I found these cool plastic envelopes at The Container Store to hold the manuscripts I print while I’m editing them.  (They’re great for carrying them back and forth to work to peruse during my lunch hour.)

editing envelopes

And finally, my awesome sister Michelle got me a subscription to Writer’s Digest as well as Poets & Writers.  Both are very cool (though I favor WD by far), and they both have lots of useful information that make them worth keeping after I read them.  (Those actually go in another one of those cool plastic envelopes once I’m done with them.)

Writers Digest, Poets & Writers

Anyway, thanks for visiting me at my house today.  As I’m starting to get my energy back, I hope my creativity will start flowing again and I can think of more interesting things to blog about.

So tell me, what do you have in your writing nook, and what keeps you inspired?

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 the vagus nerve 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?

What’s Happening…

Hello, Friends,

I apologize for my long absence.  To say I’ve had a lot going on in my life would be an understatement.  I’m still dealing with health issues and stuff at work, but most importantly, I lost my grandmother last month.  As you know, my grandparents raised me, so Grandma was really my mom.

Toby & Her Grandchildren & Great Grandchildren 04 - 029She would have been 97 next month.   She died the morning of June 29th, and her memorial service was July 7th.  She outlived (by years) every one of her nine siblings, as well as her husband and one of her children.  (The rate my health has been this year, I was sure she’d outlive me as well.)  She was sweet, smiley, silly, stubborn, smart, sometimes slow, secretive, and most of all, strong.  That was the theme of her eulogy that I gave.  (I think the alliteration got a few extra chuckles .)  I wanted a service that celebrated her life rather than focused on mourning her passing, and I think we achieved that.  I think she would have been happy with everything.

Toby & Her Grandchildren & Great Grandchildren 04 - 003-She pulled her feeding tube out again.  I got the call while I was in the midst of preparing for a huge golf tournament for work that I’d been organizing since January.  It was the night before the tournament, and the nursing home called and asked if they should send her to the hospital to have it put back in.

She hadn’t had any quality of life for quite a while.  The Alzheimer’s was so severe, she hadn’t spoken in over a year.  The last few times I went to see her, I could tell she thought she should know me, but she just couldn’t connect the dots.  Her blue eyes which smiled her whole life didn’t sparkle anymore, and you could tell the life was gone from her spirit.

Toby & Her Grandchildren & Great Grandchildren 04 - 008It never occurred to me in past times that she’d pulled out the tube that perhaps she was doing it on purpose – as if she was telling me she was ready to leave this life.  But it came to me this time, and I knew it was time to let her go.

Some people assumed because in the past when they asked how I would handle her passing, I said it was like she was already gone, that this meant I wouldn’t grieve or mourn her death.  There couldn’t be anything farther from the truth.

Alzheimer’s is a cruel disease.  It rips away the memories of a lifetime and leaves but a shell of a person.  It eventually takes away the ability to eat, to swallow, and even to breathe. Anyone who’s experienced this with a loved one knows you have to put emotional distance between yourself and the person with this diagnosis because you’re both victims.  The loved ones that are left are as affected as the person with the diagnosis.  How must it feel to love someone so deeply for your entire life and know they don’t even recognize you?

I asked the nursing home to keep her on morphine and move her to hospice so she didn’t have to die in that nasty place.  But the only hospice that took her insurance was over an hour away, so she stayed there.  I knew it would take about a week and it would be an agonizing procedure – – You’re literally starving and dehydrating the person to death.   The organs dry up and stick together until everything slows down and then stops.

I couldn’t get out to see her until the day after the tournament, so 36 hours after the call, and I saw her several times a day, every day after that. She had eye movement for everyone else that went to see her – my kids, my birth mom, my uncle – but never for me.  I felt she was actually giving me the stink eye a few times.  It’s like she knew I was the deciding factor that allowed them to let her go.  She was afraid of death her whole life, and she knew I knew it.  And I sent her there to see Old Man Death, scared and alone.  I’ll have to live with that the rest of my life.  Such is the price of being “the strong one.”

Anyway, enough feeling sorry for myself.  I hope you’re all doing well, and I especially thank those of you who sent me such sweet messages.  I hope to be back more often that I’ve been this year thus far.

Keep smiling, and stay healthy!  (Yes, all photos are of Grandma and me.)

-R.