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 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?

It finally happened!

Enough talk about my failing health!  I want to share a cool story with you…  A couple of years ago, I shared a story about my close encounter of the presidential kind.

Since it’s an election year, I thought it only fitting to recap that story and give you the more recent follow up…

In 1980, I was ten years old and in the sixth grade.  That year, the presidential election was between Democratic President Jimmy Carter and Republican Candidate Ronald Reagan.  In my Civics class, we had to draw campaign posters for our favorite candidate and write a speech that they might have used in a campaign debate.

I had an instant affinity for Jimmy Carter from the first time I saw him.  I don’t exactly know why, but I loved that he had the warmest, friendliest smile and I liked that he was a former peanut farmer.  (The fact that he was born in a mental hospital also didn’t hurt my affinity for the psychological thriller genre of which I write.)  I think I also liked him because his daughter, Amy, was only a couple of years older than me, and I thought it was so cool that she got to live in the White House.

So, on the campaign trail, President Carter was scheduled to come to my town to speak.  My school was on the corner of two main roads that led to the Civic Center, and back then, the newspaper always published the President’s motorcade route.  Imagine my surprise when, only hours after my grandparents read me the newspaper over breakfast and told me the President was coming to town, all the students of my small private school were called out of class that Halloween morning, and we lined up by the fence to wait so we could wave at him.  I was ecstatic!

At the time, I was a short kid, so the two boys on either side of me told me I should climb up on the fence so I could see better.  As the motorcade rounded the corner, the limo window went down, and the driver slowed.  President Carter grinned and waved as he rode slowly past us, and when he saw me standing on the fence, he pointed at me.  I was thrilled!

When I got home after school, I begged my grandparents to change their votes to Carter, then I sat right down and wrote President Carter a letter and asked for his autograph.

Less than two weeks later, I received a reply from The White House which said that the President was very busy and couldn’t accommodate all the people that personally asked for autographs, but they still sent me an autograph card as well as a booklet about The White House.  It didn’t matter to me that the autograph wasn’t official.  The man just lost an election, yet his office still had time to reply to a little girl.  I was overjoyed!

Looking back thorough an adult’s eyes, I appreciate this pseudo-autograph more than ever.  I mean, between a hectic schedule campaigning for re-election, and dealing with the hostage crisis (among other things), the staff at The White House had to have been crazy busy at the time, yet they still managed to reply to a little kid’s letter, and in such a timely manner, too.

So, the follow-up to my story is this:  I caught a fleeting glance of President and Mrs. Carter (along with the Secret Service) at Epcot on New Year’s Even in 1998.  Between that close encounter and my admiration of their work for Habitat for Humanity, my love for this former President only grew.

Fast forward a few years.  I’d heard that President Carter taught Sunday School classes that were open to the public.  At the time, I had two autistic kids at home, and with no child support, finances were tight, so I put that dream on the back burner.  But having learned more about the work of The Carter Center and how it affects the entire globe, I was even more impressed with this incredible, awesome man.

A few years later, my kids were close to grown, and I mentioned the Sunday School class to a trusted source.  The friend told me that President Carter didn’t do that anymore.  I was crushed that I’d missed my chance.

A couple more years passed.   President Carter was diagnosed with cancer, and, again, I was heartbroken.  But only a short time after that, I was elated to hear that he’d gone into remission.  In fact, I went out of my way to read more than the one news report I would have normally read, and that’s when I found a link to his church’s website along with the information that he never, in fact, stopped teaching his Sunday School class!

That was last December.  I wanted to go immediately, but President Carter didn’t teach every Sunday.  I then planned to go the following month, but then my own surgery was scheduled for the beginning of February, so I had to push things off again.

Jimmy Carter 2016But in March, I finally got to go to Plains, Georgia, and sit four rows from the front while President Jimmy Carter taught Sunday School!  This was the thrill of a lifetime!  You have to get there early (and by early, I mean while it’s still dark outside) to line up.  My sister and I got there around 4:30 AM. (I know I didn’t want to discuss my failing health, but this 6 hour drive and no-sleep weekend, while exciting, was literally a spur of the moment decision as to the timing, and was meant to make me feel better after all my post-surgical woes. Mentally, it did wonders, though physically, those two days set me back about two weeks.)

Once they open the doors, you’re searched by Secret Service then escorted to your seat.  (If you’ve never been around the Secret Service, that’s exciting in itself.)  You’re allowed to take photos all during the introduction period, then you have to turn your cameras off during the lesson.  If you sit through the church service following the Sunday School lesson, you can then get a photo taken with Jimmy and Rosalynn Carter.  WOW!  {The photos are very rushed, and you have to be in a group shot with everyone who rode in your vehicle, but, still, it’s so generous of the Carters to donate their time like that.  (As such, my photo is not good [we’re all blurry], and I won’t be sharing it, but I will be returning soon to try again.)}

Rosalynn Carter & Jimmy Carter, 2016As if that’s not enough, there’s a museum just down the road from the church.  In the museum is a bookstore that sells nearly thirty of the books that were written by either Jimmy or Rosalynn Carter.  The most amazing part of this journey is that if you purchase any of their books there (which are no more expensive than if you purchased them on Amazon), they give you a form to mail, along with the book and a SASE, and between four to six weeks later, you get President Carter’s autograph!  Yes, really!  (Have I mentioned yet how much I love Jimmy Carter?)

So, that’s exactly what I did.  I purchased two books and mailed them as soon as I got home, and close to five weeks later, I received them back, autographed by President Carter!  Only thirty-five and a half years after I first requested Jimmy Carter’s autograph, I got two of them!  SQUEEEEEEEEE!!!!!  (For those who don’t know {as my sister didn’t}, squeeeeee is about ten times better than Woo Hoo, and about a hundred times better than YAY!)Jimmy Carter's books

Jimmy Carter's autograph

Let’s talk:  Have you ever seen a President or other world leader up close and live?  What’s the best autograph you’ve ever gotten?

So, here’s what’s going on…

Hello, friends,

I’ve missed you all terribly.  I apologize that my posts and blogging participation has been erratic this year.  As you know, I had surgery then complications following the surgery.  Here’s what I’m dealing with (and I apologize in advance if it’s too long… I’ll try to keep it brief.):

Throughout 2015 – I vomited five or more times a week, my hair was falling out, my tongue was coated all the time, I was exhausted and freezing all the time, my vision was blurry much of the time, and I generally felt like crap.

Late 2015 / Early 2016 – I started undergoing every test imaginable to man.  This included numerous bloodwork, barium swallow studies, an endoscopy, a colonoscopy, a large and small bowel study with barium, multiple x-rays, several ultrasounds, and probably some more stuff I’m forgetting right now.  I was diagnosed with low iron anemia and low B-12 anemia, so I had to start taking supplements twice a day – Not surprising considering how often I vomited and how few foods I could actually eat in the first place.  (The really sucky thing was, with all the puking I was doing ALL YEAR, I only lost 10 pounds!)

The truth is, I was convinced I had either esophageal or stomach cancer.  Cancer runs rampant in my family, and I’ve personally already had cervical pre-cancer twice, so I was prepared for it.  In fact, at one point, I felt my life ebbing, and knew I didn’t have much longer.  I started getting things in order to prepare for the worst.

Late January 2016 – I was diagnosed with an extremely diseased gall bladder and was still waiting on results for most of the other tests.

February 2016 – My gall bladder was removed, and I felt SO much better —  better than I had in YEARS!  I mean seriously, I had actually forgotten how it felt to feel that great!  For the following two weeks, I ate food I hadn’t tasted in months or even years because it had always given me a negative effect in the past.  WOW!  This was amazing!  I didn’t throw up anymore.  My hair stopped falling out.   My vision was perfect.  I had energy.  Life was wonderful!  (If you didn’t read about it already, I detail it more here: https://rachelcarrera.wordpress.com/2016/02/15/things-are-looking-up/)

1 Week Post Surgery – All my other tests came back, and while I had some stuff show up, nothing especially egregious was noted.  Since I was feeling so much better, the doctor said it was likely that everything I had experienced was due to how incredibly diseased and infected my gall bladder was.  Only then did he confirm that I was indeed at death’s door before my surgery.  He said at best, I was only days away from it having ruptured had it stayed in.  He told me I could discontinue the iron and B-12 supplements because my body should be getting back in order.  What great news that I didn’t have cancer!

2 Weeks Post Surgery – Something went horribly wrong!  I puked black sludge and some hard objects that I hadn’t eaten and were never identified.  I had an x-ray that showed a “mystery object” inside me.  And excuse the language, but I felt like complete shit!  I mean I seriously never felt worse in my life!  (I documented that horror here: https://rachelcarrera.wordpress.com/2016/02/25/things-are-looking-down/)

I appreciate all of you who encouraged me to get myself to the emergency room stat, and that’s exactly what I did.  (Though, the $1,000 E.R. co-pay hurt almost as bad as my belly did!)

You can see the “mystery object” above the hip bone.

The hospital gave me a CAT scan, and the “mystery object” showed up again, though it had moved.  However, the E.R. doctor didn’t seem concerned, and he told me I was probably only having pain from a tiny hernia that was likely caused either by my surgery or by my level of activity following my surgery.  He sent me home with some mild narcotics and told me to take a few days to rest.

(I was highly peeved.  This didn’t feel like $1,000 worth of treatment!  Of course I felt much worse a few days later when I received a bill for an additional $500 because apparently my insurance has a separate copay for imaging!)

Early March 2016 – I had a doctor friend of mine write me a script for another x-ray at a different facility, and the “mystery object” was still there, but it had moved.  This was 12 days after the original x-ray.  He told me it could be a calcified gallstone that dropped during surgery and was floating around in my peritoneal cavity.  Great.

Twelve days later, the “mystery object” is now close to my spine.

Mid-March 2016 – I saw a doctor at a different facility.  For some reason, he got stuck on the part about the small hernia and didn’t hear anything else I said.  I was back to vomiting almost daily and sometimes twice a day, my hair started falling out again, my vision was blurry again, I was exhausted all the time again as well as freezing, and to add to my misery, now not only was I every bit as sick and pukey as before my surgery, but there was this thing in me, and after the awful black sludge and hard things vomit, I was terrified to get sick!

This doctor x-rayed only my lower abdomen and said the object was gone.  Actually, the x-ray tech tried to tell me that I must have – now get this – swallowed buckshot, and it had passed!  Yes, really!  When I told her I don’t eat meat, other than the occasional fishsticks or tuna sandwich, so it would be impossible for me to ingest buckshot, she then tried to tell me I must have swallowed a metal button!  (The fact that I own nothing with metal buttons notwithstanding.)  The fact that they didn’t x-ray the entire peritoneal cavity made me wonder if the object really did pass, or if it’s still floating around in there.

Early April 2016 – Things were really getting old for me as well as others around me.  In fact one “friend” told me to “get over it and move on already.”  (Thanks.)  My “quality of life” (What quality of life?) was non-existent.  I saw a new surgeon referred to me by the Mid-March doctor.  He ordered an MRI (with another $500 copay!) and suggested that if my bile duct still had infected gallstones in it, that could be the reason for all of my misery.  I was hopeful.  He also offered to operate on the hernia.  I declined.

Mid–April 2016 – I got the results back from the MRI.  It seems the bile duct was fine.  Furthermore, they failed to look at any other section of my abdomen for that “mystery object.”  At this point (and with no offense to anyone who has battled cancer), I almost wish cancer would have been my diagnosis – at least then, they’d know what was wrong with me and I could have hope for treatment.

Late April 2016 – I went back to the original facility that did the surgery and saw a GP there.  I told him my symptoms were: daily vomiting, hair loss, exhaustion, coldness, coated tongue, pale face, pain in abdomen, blurry vision, and general malaise.  Plus I fear there could be a thing floating around in my peritoneal cavity.  He told me, and I quote, “No, that’s too much.  Pick your top three symptoms, and we’ll try to deal with those.”  Yes, really!  So I chose vomiting, hair loss, and blurred vision.  He then decided exhaustion needed to trump hair loss, and told me to see an eye doctor for my vision, and he said I didn’t need any more x-rays to see of the mystery object was still present, and that it was a “ridiculous request.”  (Jerk!)  He then ran another thyroid panel, as well as a CBC, and checked my iron.  Later that week, he claimed all the bloodwork came back fine.

So…  I started taking the iron and B-12 supplements twice daily again despite the bloodwork being fine, and guess what?  My vision is back to normal, I am still really tired, though not as much, and my hair loss is still more than normal, though not nearly as bad as it was.

However, I still vomit at least five times a week, and sometimes twice in a day.  Anxiety courses through me every time someone asks, “What’s for dinner?”  I now judge and select food not by how it tastes going in, but by how it might taste coming back up.   I still have constant pain in my gut.  I often puke so violently, it causes nosebleeds.  And I have tiny broken blood vessels all over my face from throwing up.

As far as the “mystery object,” maybe it’s still floating around in there somewhere.  If so, from what I’ve read, I can expect it to eventually puncture an organ or cause an abscess, and I guess at that point, someone will remove it.  Or, maybe it really did get in my digestive tract and pass.  If that’s the case, I have to think it’s more of whatever the hard things were I puked with the black sludge.  As a few medical friends have said, it could only be metal or an extremely calcified stone to show up the way it did in the x-rays.  I have to wonder if something happened during surgery for stones to slip into my belly somehow, though that seems unlikely.

I don’t know.  But what I do know is, I feel miserable, and no medical professional that I’ve seen seems to care.  Many of my “friends” make jokes about having me committed because I’m “crazy” and “it’s all in my head.”  And that gets old, too.

Anyway, I know I promised to try to be brief, and I already failed at that, so I’ll close now.  Thanks for reading and sticking by me.  I miss you guys!  xoxo

-R.

Things are looking DOWN…

Hello, friends.  Last week when I told you things were looking up after my recent gallbladder surgery, I apparently evaluated my condition prematurely.  Today, I am EXTREMELY ANNOYED to say the least.  The VERY least.

In fact, please pardon the “French,” but I’m fucking pissed!  If you have a weak stomach, you’ll probably want to skip the rest of this paragraph and the next one.*  I was feeling a lot better after my surgery.  They gave me two to three weeks off work instead of just one because of all the pus that was in my gallbladder and the fact that I’m allergic to antibiotics.  So I was working half days and still getting pretty worn out from just four hours of office work, but still, I was hopeful that things were definitely improving.

Then on Tuesday, just two weeks post surgery, I woke up with a “tummy ache,” and my belly was more swollen than it had been at my post surgery check-up the Friday before.  I went to work for the morning, and while I was there, I just felt “off.”  People started telling me I looked grey and not good at all.  When I came home for the day at lunchtime, I ate some broth and crackers soaked in broth (which was my only meal of the day).  About an hour later, I puked broth and crackers.  Then I had three more rounds of puke, which can only be described as black sludge!  And in that black sludge, there were four “hard things” that looked like cat turd and were the size and shape of a tube of Chapstick!  (Keep in mind, I ate nothing solid.)  I won’t even disgust you further by describing the foul stench.  HOW NASTY!

*The weak at heart can continue reading here –>  So I immediately called the surgeon’s office and spoke to his nurse, and said, “I think I just vomited feces.”  She told me the doc was in surgery for the rest of the day, but if I felt it was an emergency, I should go to the hospital.  Otherwise, she’d talk to the doc and call me the next morning.

The next morning, I was even more swollen, and I hadn’t heard from anyone by 9:30 (they open at 8:00), so I called them back.  The nurse told me to go to the lab and get bloodwork and an x-ray.  So I got the bloodwork, then the x-ray.  The x-ray tech had me take off my bra because it had metal wires, but she said I could wear my pants because they were elastic (because I was so swollen) and had no metal.  She ran two x-rays then called in her supervisor.  There was “something metal” showing up near my left ovary.

They checked my pants, my panties, my gown, and the table, and found no metal.  They asked me repeatedly if I was “sure” I never had any other surgeries on the left side.  (Did I forget being sliced open before?   Uh, NO!  Of course I haven’t had more surgeries that I forgot about!)  So they assumed it was on the film, and ran a second set of x-rays.  When the metal showed up again, they ran a third set.  It showed up in all three sets.  It’s about the size of a pinky fingernail.  I asked to see, and they showed me.  It’s definitely something that was NOT there in the x-rays I had three weeks ago before surgery.

So I got home before noon and waited for the doctor to call me with the results.  (I have to wonder if the titanium clip they put on during my gallbladder removal didn’t slip off…  I did NOT see the gallbladder clip on the x-rays, but then again, I only looked briefly, and I was looking at the foreign metal.)  When the doctor hadn’t called by 3:45, I called, and his nurse said they didn’t have the results in yet (even though it’s from the same facility), and she’d call me as soon as they did.  I told her my concern about the metal, and she made a note of it.

Today, I woke up even more swollen, and I went to work.  I expected to get a call telling me they need to schedule surgery to remove this thing (and possibly put it back where it belongs).  When I didn’t get a call by 9:45, I called them and was told that the doctor and nurse were both in surgery until the afternoon.  The nurse called me close to 1:00, and said the doctor says my x-ray results are “fine.”  I asked about the metal thing, and she put me on hold then said he again said I’m fine.  I reminded her how swollen I am, and she put me on hold yet again, then said the doctor said he doesn’t believe it’s related to surgery and I should make an appointment with my primary care doctor.  I then got a little postal.  Just a little.  I told her I was rather perturbed, to say the least, that two days ago I called to tell her I’m puking shit, I’m swollen several inches, and the doctor hasn’t even wanted to see me, and two days later he tells me to see someone else!

So I called the GI doctor (from the same facility) who referred me to the surgeon, and his nurse was with patients, so I told my story to the lady who answered.  Only this time, I was a bit more forceful.  I asked if I needed to make an appointment with him, or perhaps if I needed to make an appointment with a different facility altogether to get a second opinion.  She said the doctor was booked, but she referred me to their after-hours annex where I am supposed to be in about an hour.

What’s really frustrating is that with tomorrow being Friday, if this annex doctor also tells me things are fine, I don’t foresee being able to get an appointment anywhere else until next week at earliest, not to mention being able to obtain copies of all my films and records to take.  So I’ll keep swelling over the weekend and hopefully not die before I talk to you all again, not that these turkeys seem to care.  (And people wonder why I have such mistrust for most doctors.)

I’M SOOOOO ANGRY!

Anyway, that’s the update, friends.  Thank you for allowing me to vent.  I hope you all have a much better weekend than I’ll probably have.  I miss you guys!

-R.

Things are looking up…

Hello, friends.  (Or is it now strangers?)  As you know, I’ve been M.I.A. for a few months now, but it seems we’re finally getting to the bottom of why.  As many of you know, 2015 was not my year.  I was sick most of the year, and in fact, there were only three times throughout the entire year that I lasted as many as five days without throwing up!

The odd thing was, I didn’t have pain, per se, but as soon as I ate something (other than waffles and grilled cheese sandwiches – literally ANYTHING other than that), I felt a weird fullness in my belly, and I HAD to get that food out of there ASAP.  The only thing that made it feel better was vomiting.

I was so exhausted, I could hardly stand to stay awake through a full day of work, much less anything extra such as blogging, writing, editing, etc.  Actually, around October, I started coming home from work and immediately taking a nap until 9 or 10 at night, then got up, ate dinner, and went back to sleep.  Even the thought of planning something fun such as going to the fair or taking a road trip seemed daunting because I already knew how much it would wipe me out, and I was afraid I’d be too tired to even enjoy it a little.

Last summer, my hair started falling out.  Luckily, I have really thick hair so other people didn’t really notice.  But I did.  There were always clumps of hair on my pillow each morning and on the bathroom floor each time I combed it.  It was gross.  And scary.

Around the beginning of December, my eyes started hurting all the time, especially behind and underneath them, and everything was getting more and more blurry.

So in November, when my vomiting went from four or five times a week to twice or more a day, I finally started seeing a doctor.  The first doctor diagnosed me with low iron anemia, and she sent me to a specialist.  The specialist diagnosed me with low iron and low B12 anemia.  He said my levels were as low as if I were bleeding internally, though I am not.  (Of course, when the only foods you can keep down are waffles and grilled cheese sandwiches, my guess is you probably lose a lot of nutrients in the process.)

During December and January, I had numerous blood tests, upper, lower, and female ultrasounds, an upper GI barrium swallow study and a small intestine barrium swallow study, an endoscopy, a colonoscopy (boy, were those fun — NOT!), and several biopsies.

After all the cameras, needles, scopes, and probes, I actually received twelve different diagnoses!  (The doctor was frustrated because his computer program only allowed him room to write ten.)  Most of them were nothing major, but he did say I had some gallstones and an inflamed and “thick” gallbladder.  Besides sounding extremely gross, I wasn’t sure what that meant.  He said it was diseased and needed to come out ASAP.

I wasn’t so sure I wanted that kind of surgery, but I was so relieved that I didn’t have esophageal or stomach cancer as I feared, that I was at least willing to listen.  (I was so sure that I had something fatal, I even went as far as making out a list of “what to do in the case of my untimely death.”  Thankfully, no one needed to use it.)

I went home and Googled “diseased gallbladder,” and once I saw what one looked like, I agreed that I didn’t want that nasty thing inside me any longer.  So I had the surgery, and as it turned out, my gallbladder was not only “quite diseased,” it had an “acute infection.”  It was actually “filled with pus and ready to rupture” according to the doctor, the nurse, the anesthetist, and a surgical assistant.  Apparently, I was quite lucky indeed, because being allergic to so many antibiotics, it could have easily killed me in only a few more days!

I’m definitely thankful to God for sparing my life, and I’m quite cognizant of how close I came to  meeting my Maker face to face.

Most people who get a laparoscopic cholecystectomy are encouraged to move about and go about their daily lives other than lifting anything, and they return to work in about a week.  Because of the level of my infection, I was told “bedroom, bathroom, and kitchen only, and no work for two to three weeks.”

Tomorrow will be a week since my surgery.  I feel SO much more energetic than I have in months, yet when I do anything for more than twenty or thirty minutes (such as sit on the computer or even just stand to wash dishes), it wipes me out.  For the first time in a long time, I feel invincible, then I attempt a minor project to alleviate my boredom, and learn just how weak I really still am!

I’ll still be treating for my anemia, and I actually threw up last night, so I at least lasted a full five days this time.  But I’m hopeful that the vomiting will stop once I’m fully healed, and then the iron and B12 will regenerate.

So I hope to get all this under control soon, and get back to my regularly scheduled blog… and to you, my friends and blogging family.  I miss you guys!

xoxo

~Rachel

[UPDATE:  I just reread this, and it seems I still have a bit of brain fog… The reason I wrote all the detail that I did above was to tell you how miraculous it is that less than one week post-surgery, my hair hasn’t fallen out, my eyes don’t hurt anymore, and the vision blurriness is completely gone!  Isn’t it incredible that an unnecessary organ can wreak such havoc on so many unrelated body parts?  The best part is, so far, I’ve not had one bit of refux or acid.  I can’t tell you the last time — more than 20 years — I’ve not been awakened in the middle of the night by barf juice gagging me.  This is amazing!  I’m used to drinking 2 TBSP. of baking soda with a bit of water SEVERAL times every day and night.  I keep a box of baking soda in my work desk, my car, and even my purse!  Since my surgery, I’ve had the tiniest bit of heartburn that lasted no more than 5 or 10 minutes just a couple of times.  It was so mild, I didn’t even do anything to make it go away.  Compared to what I’ve been living with for so long — imagine swallowing 8 ounces of battery acid 3 or 4 times a day — I now feel so liberated!]

Just Because…

Last week, I was watching a DVD episode of the old TV show “Little House on the Prairie.”  It was the episode entitled “Wave of the Future” where a company tries to turn the town restaurant into a franchise.  Needless to say, it doesn’t work, and after a bit of chaos, everything returns to normal.  The end shows Colonel Sanders riding up in his horse and buggy, and suggesting to Mrs. Olson that he would like to turn her restaurant into a one that exclusively sells chicken meals.

As the audience, we are probably supposed to chuckle, and then go on with our lives.  In my case, that didn’t happen.  I immediately thought back to when I was little and the real Colonel Sanders (not the bozo they use now since the real Colonel is dead) was in all his own commercials. I particularly loved the one where he flew away in a hot air balloon that looked like a big bucket of chicken.  I just knew there was no way possible for Colonel Sanders to be alive, much less entering into the chicken business in the 1880s when that episode of “Little House” took place, and still be alive when I was a kid.  (I know it’s only fiction, but I’ve read before that Michael Landon usually insisted on being historically accurate when possible.)

So I’m finally getting around to the point of my post.  I looked up Colonel Sanders’ birth date, and in doing so, found that not only was I correct that he wasn’t that old, but I found THE COOLEST WEBSITE I’VE EVER SEEN!  (And keep in mind that I don’t even eat chicken!)  If you don’t believe me, just go to http://www.colonelsanders.com/ and let the fun begin.  Be sure to click on every Colonel, and turn your sound on!  Have fun!