My Story Part Five: The one where I finally got a diagnosis

Are you guys ready for a diagnosis?  So was I!  I think you might get what you’re wishing for in today’s post!  Let’s get to it!

By the way, I unfortunately don’t have a ton of photos from this time in my life. I know that’s been really fun for some of you to see! My family was all about our camcorder, which I would totally love to put clips of home movies in, but I don’t know how! So for the next two posts, there will be significantly less photos, and mostly just me talking about what was going on.

The night that ended with me falling asleep in the recliner turned out to not be quite over.  I woke my mom and dad up around four o’clock in the morning with the beginnings of going alkaloid and I fainted while waking them up.  As you have likely caught on, fainting was something I had done a few times, but everyone always blamed it on overexertion or heat.  My parents called for an ambulance and I was taken Plano Medical Center’s emergency room.  We lived in a quiet neighborhood and the flashing lights from the ambulance and fire truck probably made for quite a sight!

Once there, the doctor decided to do an arterial blood draw.  This is where the blood sample is drawn from an artery rather than from a vein.  After some further research, all I can determine is that they were doing an arterial blood gas sampling.  I don’t really know why the doctor thought this might be helpful.  I do know that it hurt like heck and a half and that it took numerous tries to get it done.  I don’t know for sure if it took so many sticks because they were going through my wrist and my hands were in their crab claw formation, or if it is always this difficult to get this type of blood draw.  I just hope to never ever have to go through it again.

The test results of the terrible arterial blood draw came back normal, just like every other blood test.  Then, I was transferred to Children’s Hospital in Dallas, where I stayed for two days until my alkaloid symptoms subsided. The general pediatrician at Children’s sent me home with a prescription of amitriptyline because she was following through on that “this is all in her head” diagnosis.  I was on this medication for several months before someone switched me over to Zoloft for the same reason.  These medications made absolutely no difference in my symptoms.

This merry-go-round kept going and going.  There were more hospital visits, just like the four I’ve already described.  Every two or three months, I would end up at Children’s Hospital for a few days where I got fluids and was sent on my way.  My weight remained low during this entire time.  Doctors would simply say I wasn’t “prospering.”

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Now for a seemingly random side note – I had always thought I had a silly outie belly button.  It was really weird, I could push it in and it was this whole funny thing among my friends.  As it turns out, it was a hernia.  Whoops!  In the summer of 2005 I had it fixed and the doctor recommended that we have my gall bladder tested to see if it was causing me all of this grief.  Good thought, but nope, the results showed no signs of problems with my gall bladder.

Continue reading “My Story Part Five: The one where I finally got a diagnosis”

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.

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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!

Continue reading “My Story Part Four: The one with the crab claw hands”

My Story Part Three: The one about the spaghetti belly.

It’s been so fun to write these stories and I hope you’re enjoying tracking along with me so far! Here’s part three. P.S. these photos aren’t super relevant, because they aren’t of me at doctor’s offices. They’re just here for fun and to show what I was looking like through the years.

My Story Part Three

When it came to finding the right doctors, we didn’t get off to a great start, but we were always advancing.  We started with a doctor at Medical City in Dallas.  His plan of attack to solve the problem was to eliminate my all-time favorite food in the whole wide planet – cheese and all dairy products.  After that drastic dietary change yielded no improvement in my belly issues, he decided we needed to do an endoscopy to see if there was a physical problem brewing.

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An endoscopy is where they put the patient to sleep and put a little tiny camera down their throat to look around to see what’s going on.  They can take a look at the esophagus, stomach and maybe even a tiny bit into the small intestine – but not very far because that organ is just way too windy and long to get in very far. Continue reading “My Story Part Three: The one about the spaghetti belly.”

My Story Part Two: The one where my family made a big move and I stopped growing.

Hey everyone!  Welcome back for the second part to this story!

My first grade year was when things started showing up that something wasn’t going right with my little seven year old body. There was a marked increase in nausea and vomiting, I spent a lot of time in the bathroom and my weight gain started to slow.

My Story Part Two

This was when my family started seeking answers.  Let’s remember where we lived at the time.  Remember when I told you about Perryton, Texas – the town that didn’t have a Walmart?  Usually, towns of this size don’t retain a large population of specialty doctors.  We started at the local level with the doctor who brought me into this world. This was the same man who used some weird purple glue stuff to glue my ear back together when I smashed into a thing on the playground at school. This was the man, the legend, Dr. Mann – not even kidding.

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He didn’t have much help for us. So, we went to several other general practice doctors around the area.  I remember one in particular that I went to with my mom and my grandma.  He gave us this huge bottle of milky yellow medicine.  I will never be able to tell you what it was, or why he gave it to us.  Believe me you can only retain so many things you’ve tried when you’ve been trying things since you were a tiny child.  But I do remember that it was gross – as all liquid medicine is.  My husband would disagree, but oh well. Continue reading “My Story Part Two: The one where my family made a big move and I stopped growing.”

My Story Part One: The one where I was born and lived on a farm.

Yesterday, I had the opportunity to take my first phone call as an Oley ambassador. The gal and I clicked so well that we ended up talking about the importance of people knowing your story and the fact that people are interested in listening to other people’s stories.  This is basically everything I believe in and stand for, yet here this already built blog has sat for several months, just waiting to be filled with my story.  So here I am today, taking the leap and sharing the story that I’ve always shared in my close circles with the rest of you because I can’t keep trying to make this blog “perfect.”

Even though I don’t know exactly where to begin, the longer I spend thinking, “Oh yes! That definitely needs to be shared with the world, but it can’t be my first post,” the fewer things I’ll ultimately be able to share, which is so sad.  So here we are, I am going to start with a few posts over the next couple of weeks telling the lengthy version of my health story.  It will be the foundation for the rest of the blog and must be included for the blog to even make sense. And this will probably (hopefully) be the posts I have people reading years down the road to welcome them here.  So hey 2025 people, welcome to you, too!

I’ll start this story by saying I don’t really remember a whole lot about being born.  I don’t think a whole lot of humans do.  But from what I’m told, I was born on the nineteenth of November in 1992 as the first born of Roger and Debbie.  I’m also told that I got home from the hospital right before a blizzard in the Panhandle of Texas. The kind of blizzard where legend has it, my uncle Frank’s hat blew right off his head and it wasn’t found until after the snow had melted away much later in spring.  Nuts, I know.

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Continue reading “My Story Part One: The one where I was born and lived on a farm.”