My Story Part Four: The one with the crab claw hands

Welcome back for part four!  Just a note, these photos are super random from these years in my life and are solely for fun. I’ll jump right in!

About the same time as the barium swallow test, I had a sonogram after visiting my new family doctor.  The radiologist called the doctor in to consult because they could not get a read due to the massive amounts of gas in my gut.  So I guess this was pretty much ruled useless, outside of them being able to say, ‘Well good grief, that girl is full of hot air!’ or something like that.

My Story Part Four 2
I didn’t typically dress like this, it was some kind of Red Ribbon Week dress crazy day!

Several days after these tests, I had my first ever scary ‘episode.’  I had been vomiting several times a day for several days.  This caused my hands and feet to do this weird thing where they sort of draw up.  They called it, “going alkaloid.”  Picture your hands, if you were pretending to be a crab, turned in, and clamped like little claws.  But mine would not move out of this drawn up cramp.  My feet were doing a similar thing, turning inward and I was unable to move them.  They hurt like the dickens when they do this, and it is terribly scary not to be able to move what you can usually move just fine.

Someone decided it was time for me to be taken to the local hospital, so off we went.  Unfortunately for me, the worst part was the first thing they did – they put in a gosh, darn IV.  At this early point, I was so unfamiliar with hospital life and the things they did, that this seemed like a HUGE thing.  I thought that I must be really, really sick!  And I just absolutely despise IVs.  By the time they got fluids running, my speech was starting to slur and I was just a mess.  But after three hours of getting IV fluids, my body began to release the spasms.  I spent the night in the hospital and part of the next day and was released back home to get back to normal life.

My Story Part Four
Playing that eat the donut off the string game, cause my birthday parties were always so much fun!

My GI doctor ordered a new test called a ‘hydrogen breath test.’  This test is used to test the gas in my breath and indicates if there is bacterial overgrowth in the small intestine.  We had to drive from McKinney to Grapevine for me to puff some of my hot air into a breathing tube!  Some say this test is not a great indicator, but it’s what we knew to do at the time.  It did help us at least to learn some important information.  From what my dad remembers, they told us the average number range for this test is 10 to 15 ppm (I am not going to even pretend I know what that unit means even after googling about it) and the number I docked in at was 400 ppm.  I would say that’s a pretty large margin.

I was given a month’s worth of amoxicillin to treat this small intestinal bacterial overgrowth (SIBO).  While I was on this medication, I had an amazing month.  The gas and bloating nearly vanished and I finished out the last three weeks of my fourth grade year without missing any more days!  I’d missed eighteen days of school during the spring semester of fourth grade. That’s 1 out of 5 days.

My Story Part Four 6

The funny thing is, this sounds like a terrible school year.  But it was honestly one of the most fun school years I ever had.  I had a great group of pals and my teachers were AMAZING.  (Hey Leigh and Chris!)  And I was having fun!  As you’ll learn, I really never let any of this health stuff keep me from having fun.  So as you’re reading this, try as hard as you can NOT to picture the saddest ten-year old you’ve ever seen.  Instead, picture a ten-year old with a big ol’ bloated belly with a big smile on her face.  Sometimes she has to lie down while she’s hanging out with her friends because her belly hurts so badly.  And sometimes, she even has to run to the bathroom to throw up, but she comes right back out and keeps going as best as she can.  Of course, there were sad days and tears shed – I’m not some kind of robot.  But I don’t want you to picture little me always just sitting on a hospital bed or in a doctor’s office.  It is true that I was at those places more than most, but I had a fun childhood!

My Story Part Four 5

Early in June of 2003, the amoxicillin ran out and my symptoms returned and worse than they’d ever been.  The gas and bloating were worse.  The vomiting was more frequent and of longer durations.  In mid-July, the vomiting got even more intense and I found myself in the hospital again with another ‘alkaloid’ episode.  This time I was taken to Children’s Hospital in Dallas.  I didn’t end up being admitted this stay, but was re-hydrated and sent home.  This time it took about seven hours of fluids for my body to release the claw-like spasms.

Four days after this trip to Children’s Hospital, my dad, brother and I flew to San Diego, California to visit my Aunt Judy!  We absolutely love going out there to visit her.  She is so fun and knows all the cool places.  So, we were all very excited about this trip!

My Story Part Four 8

The second day we were there, I ate half a taco for lunch (clearly, eating wasn’t going super well for me.)  By 5 o’clock that evening, I had severe stomach pain, bloating and gas.  A couple hours later, I was vomiting, a LOT.  Between 7 o’clock in the evening to 3 o’clock in the morning I had thrown up six times.  I was able to take a tiny nap and then threw up several more times. The claw hands were back and we decided it was time to get me to the hospital once again.

My dad took me to the ER at Scripps in Encinitas.  I remember this visit very vividly.  When we arrived, there was a super drunk guy there yelling very loudly.  Although I felt like complete garbage, my dad and I were giggling about it all and trying to figure out what he was saying.  All the while, waiting for my fluids to get started, my entire body went into a spasm.  I couldn’t move anything for several seconds.  This was one of the scariest things that had ever happened to me thus far. I couldn’t even tell my dad what was happening because I couldn’t talk.  And I don’t even know if I ever did, because I didn’t want to scare him even more.

The IV fluids were started, several hours passed, and my body was still in crab claw mode.  The doctors decided to transfer me to the Children’s Hospital in San Diego (woohoo, I got to go on my first ambulance ride!)  I stayed in-patient there until the following Monday, when I was finally released.  All I remember about this hospital was that it was really cute in my room.  I don’t know how to describe it because it feels really distant in my brain.  But I remember thinking the clock was just the cutest thing.

My Story Part Four 1

This hospital trip, it took nearly twenty-four full hours for my hands to fully release from the crab claw business.  If you will notice, in this three month span, I went from being fine after three hours of IV fluids, to seven hours, all the way to twenty-four full hours with hospital stays going from out-patient to in-patient and getting longer.  What this all means is that things weren’t getting better!

But guess what!  The fun in San Diego was just ready to begin!  We were able to go to Sea World the following day (P.S. I do not stand for whales in captivity.  I was ten years old and just really wanted to be a ‘Shamu Trainer.’  I definitely thought that ‘Shamu’ was a type of animal rather than the name of a specific killer whale.)  I ate a good breakfast and had so much fun at the park getting splashed by killer whales and seeing seals and all kinds of cute animals.  All with no complaints of my stomach hurting!  What a day to be alive!

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The next day, we flew home to Dallas.  I ate a good breakfast once again!  (I know you’re probably wondering how the heck I remember eating specific breakfasts, and I’m here to tell you that my dad has one of the best memories of all time, and he wrote a document that he has updated over the years to remember this history.  I am beyond thankful for this.  This document has become so helpful over the years because I have something to tell the story when I see a new doctor.)  I didn’t complain of any stomach pain up until 4:30 that afternoon.  By seven that evening, I was complaining, then not long after that, I was throwing up again and fell asleep in a recliner.

Does this feel like a merry-go-round to you too?  It did when I was living it too.  I lived for those days of no stomach pain, but they always seemed to be so far away, on the other side of the ride.  I hate to say it, but this doesn’t stop.  The tests keep coming, and the hospital stays keep happening.  But things do change, so stay tuned for the other rides I hop on along the way!

The Pretty Couch Potato

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