Hey... Duct Tape Fixes Everything!

I left Frankston and headed north to Denton.  The summer had quickly passed and it was time for Residence Life Training to begin.  I came back to Kerr Hall, excited to see my friends that were truthfully more like a family to me.
My parents helped me move back in to my dorm room and said good bye (mom ALWAYS cries... so do I though).  And I jumped right in to prepping for the fall semester.  It was the best time to enjoy bonding with my friends before the hoards of residents came back for the school semester.

Oh...  So here's a little bit of background info...

Say hello to Kerr Hall... my home during college.



Kerr houses just under 1,000 college students... wait... let me slightly rephrase that.  Kerr houses just under 1,000 college freshmen.  Now... to put that into perspective, that is pretty darn close to the population of my hometown.  And they all live in ONE BUILDING.
SO.  Just imagine what was running through my mind when I got hired to work as a Resident Assistant at this hall.

Oh. My. God.  (Yep... that basically covers it).

Welp... as you can guess, I pulled through.  I got to Kerr Hall and I LOVED IT!  Like I said already... the people I worked with quickly became friends and then family.  I can't even begin to tell you how blessed I am to have had them in my life then and still. 

Please excuse me as I have a quick trip down memory lane now....

 
 
 
 
 
 
 





Ok.  Thank you.  Back to it...


So I get back to school for my second year as an RA.  Training begins, and we have to walk ALL OVER campus to get to sessions.  UNT's campus is pretty spread out, and our sessions were on the opposite side of campus from Kerr.  I would walk, with the other 22 staff members to sessions.  And man, did that trek wear me out.  I could barely walk and talk at the same time.  I was almost gasping for air, sweating, and panting by the time we arrived at our destination.  Aw... who am I kididng... I would be huffing and puffing just from walking to the next building over!

I thought, "damn... I didn't know I was this out of shape.  This is just embarrassing!"

I felt... so weak.  And on top of it all, I was falling asleep in my training sessions!  I. Was. Exhausted.

Oh, and I still really couldn't breathe because I was STILL SO congested!  I would blow so hard to get the junk out of my head to no avail.  I was in a constant fog.  

And then I started noticing this deep, aching pain deep in my chest.  It was like my chest was bruised... and I felt it more and more with each breath.  I guess that is the best was I could describe it...  The pain was pretty subtle at first... and then basically constant.

Through most of this training time, I was still on the antibiotic that the ENT in Tyler had prescribed.  And I knew I did NOT want to go back to see that man.  He was rude, dismissive... ugh... Why pay the huge cost to see a doctor that didn't even seem to care?  So I cancelled my follow-up appointment and decided to see a doctor at the Health Center on-campus.  After all, I had already been paying for those services in my student fees.  Seemed like the smarter choice to me.

School hadn't begun yet... so I anxiously waited for the day that the Health Center opened.  The moment they did, I was there.

After checking in, a nurse got my weight and vitals and got me into an exam room.  I told her about my symptoms.  She seemed so understanding and concerned and so... nice!  She wrote down each thing I told her.  
Then she went to get the doctor, and I began to think, "Ok!  This might be going somewhere now~"  After a few minutes, an older, squatty woman came in with all completely gray hair that just about touched her shoulders.  I gave her, just like I gave the nurse, a rundown of my symptoms.
The summer-long congestion, the severe ear infection, ALL of the different antibiotics, and the numerous rounds of steroids.... and now this aching in my chest.

And then...
No response really.  Nothing more than a "huh".

After all that...?  the detailed laundry list... the desperation in my voice... all I got was a "huh"?

She had me do a bunch of weird breathing (you've done it before too) while she listened with her cold stethoscope on my chest and back.  
I listened to the silence... and my breathing that seemed so loud in that moment.

Finally she took the buds out of her ears and wrapped the stethoscope back around her neck.

"Well... you should just take some Mucinex for that congestion.  And... I don't know why your chest is hurting... so... take some Tylenol."

"Mucinex?  But I have been on SO MANY antibiotics so far, and they haven't helped at all!"  

The woman didn't even give me a response.  Had no empathy.  Maybe she was preoccupied.  I don't know... maybe she just didn't care?  

"Why bother?" I thought.  I could tell I wasn't going anywhere with this one.  I left.  And immediately made an appointment with a different doctor at the Health Center.  One that I had seen before and felt comfortable with.  Maybe she would make something happen?









Take a Tylenol?

REALLY?!?!

Is Anybody Listening?

I remember crying a lot as my mom drove me to my ENT appointment in Tyler.  I also remember being really... just... mad.  

"This is it.  NO MORE antibiotics.  I need someone to do more than just prescribe me another antibiotic.  Something is wrong and I know it.  This is NOT just a run of the mill ear infection.  If I have just gotten worse after 3 different antibiotics, it is obvious that another medication is not just going to fix everything."  

I was tired... and it was becoming more and more apparent that this "ear infection" was not just going to go away.  It was apparent that this infection was flat-out stubborn.  

I sat down in the exam room and the doctor came in.  It was obvious that he wasn't much for talking.  I would talk... my mom would talk... but his responses would be short. and. dry.  At times, I didn't even feel like he was listening to us at all.  

I rambled on about everything I had already gone through...  I told him about my study abroad trip, the hearing loss, the three doctor visits before him.  I mentioned I thought I may need some type of surgery to get rid of the infection.  I had already been on three strong antibiotics, and nothing had been helping.  My pain was only getting worse!  

His only replies would come out sounding something like a grunt.

He went right to grabbing that otoscope and looking into my ear.  Without a single second to process a single thought... that man decided that I needed more antibiotic.

I. was. FLOORED!  I was screaming, "ARE YOU KIDDING ME?"  (In my mind, of course).

"But I've already been on three different rounds, and they didn't work at all!  I'm feeling worse, and the pain is getting worse each day!"

He non-empathetically said that I just needed to be on one of the antibiotics I had already taken, but for two weeks instead of one.  Dryly, he told me to come back in two weeks for a follow-up.  He walked out and that was that.

I bawled... I felt so helpless.  But I thought, "hey... he must know what he's talking about, right?  Maybe he is right."  The nurse came in to give me a steroid shot in my butt and a script for the pharmacy.  As I walked out of the office, I passed by my doc in the hall and politely told him thank you.  He didn't even acknowledge me. DIDN'T EVEN LOOK AT ME!

It was obvious that I had inconvenienced him.  
Jerk.

Why didn't I stand up for myself?

"Your request could not be understood. Please hold to speak with the next available representative."

Pain.

It's such a weird... I don't know.  Concept?  Physical pain, I mean.
Our own pain is so real, so tangible, so... dibilitating at times that you just want to SCREAM.
But then nobody can understand the pain that you feel.  It's yours and nobody elses.
How do you prove the pain you are in to someone else?  They don't feel it.  You can't show them.  Nobody can really understand it.
I mean, when you have the flu... the fever, the vomiting... they are all proof of you being sick.  But the pain... how do you get someone to really get that?


I remember like it was yesterday.  Grasping at straws to find just ONE person who would understand... just one person who would believe the amount of pain that I was in.

I called EVERY single Ear, Nose, and Throat Specialist within an hour drive from my house.  By the third call, I was weeping so loudly that the unsuspecting receptionist on the other end couldn't even make out what I was trying to say.

"I'm sorry ma'am, it's just that we don't have any openings for new patients until mid-August."

With each call, I felt so defeated.

"PLEASE. PLEEEEASE.  I just need to see someone, anyone!  I can't bear this pain any longer.  I can't see straight.  I can't function.  I am in so. much. pain.  Please."

The call would end.  and I would hyperventilate.

---I don't understand!  How can they hear me on the phone, how could they listen to me bawling in their ear!?  WHY AM I IN SO MUCH PAIN!---

Then I got pissed. 
---This isn't right.  Why the does it matter if I'm a "new patient"?---

I randomly chose a place to call (as I had called all of them about 3 or 4 times).  The receptionist answered, and I put on my big girl pants and demanded an appointment.

"I'm sorry ma'am, but I told you alr..."

"No.  I know what you told me, and it's not acceptable.  I am in pain, and I need to see a specialist.  now.  So... If you can't make that happen, I need to speak with the doctor myself.  So.  Do you have an appointment for me or not?"

"Well ma'am, my hands are tied."

Every emotion was boiling.  My stomach had butterflies... my ears were ringing... my face was burning...  I thought I was about to have a nervous breakdown.



And then I did.

It all came pouring out... I cried and cried.  Snot pouring out of my nose the same rate that tears were coming out of my eyes.  Everything I was feeling had surfaced, and I felt like I was outside of my body looking down on myself.  
--Who is this person?  She looks so helpless.  How had it come to this so quickly?  What had I missed?  
WHY WOULDN'T ANYBODY HELP ME?!?!---

If the woman on the line was talking, I hadn't heard a single word of it.  
At one point, I realized I was hearing music on the other line.  She had put me on hold.  

My heart rate slowed and the wailing stopped.  Quiet sobs escaped me, trying to catch my breath... I made disjointed hiccuping sounds.  
The woman came back on the line and cautiously she spoke.  

"Ma'am, you can come in tomorrow afternoon.  We will find a place for you."  

And all I could say was "ok".  

I was so mentally and physically exhausted.  I was numb.  

One thing is for sure though, nothing could numb the pain I was feeling.  

Maybe There's a Scratch in the Vinyl

I was just a day or two back from China in early June and back at work.  It had to have been within days that I started to notice that my hearing was diminishing in my left ear.  No pain... I just couldn't HEAR!  While checking people in, I would have to lean FAR over the front desk, offering my right ear just so I could hear the person speaking across from me!

Also, like usual, my allergies were acting up, and I was SO congested.  I was a total mouth breather!  Ewwww... haha.  But it's true.  I couldn't breathe out of my nose at all.  

Honestly, I thought I just had water on my ear drum?  Or maybe I was having some problems acclimating after the long plane trip from China?  

But when I began to feel an aching pain deep within my ear and the hearing in my right ear started to diminish as well, I knew it was time to see a doctor.  This was kind of a tough decision for me to make because I didn't have insurance.  And as a college student, that $50 charge took a big hit!  But my parents really convinced me that it was time to go.  So I quickly made an appointment with the doctor in town.  

A little more background info:
I am from the VERY small East Texas town of Frankston.  Population = just over 1,200 (but that may include livestock).  One doctor, one pharmacy, a tiny town square, and a Dairy Queen.  You're not a real ETX town unless you have a Dairy Queen!  Haha...  

So I get taken back to the exam room and see the doc.  I give her a rundown of my symptoms.  Some of them were pretty usual with the allergy problems I had seemed to have been plagued with.  Growing up, I was in her office a couple times a year with my usual severe case of strep throat.  My tonsils are the ugliest pair I have ever seen!  Every time a doc looks in my throat now, they tell me how strange my tonsils look.  
She grabs the otoscope and takes one peek in my left ear, and whaddaya know!  "Lauren! This ear is totally infected!"  
What?!?!  My ear is infected?  Well, crap.  That sucks.  Turns out my right one was also pretty infected.  

"Ok doc, what are you going to prescribe?"  And I leave with a prescription for an antibiotic called Amoxicillin and a low dose of a corticosteroid called Prednisone.  I go about my business and return to work and hope that this antibiotic kicks in fast!

And guess what!  I was feeling great!  Through the 10 days of taking my prescriptions, the pain was gone!  Still couldn't hear though.  I figured I could address that later though, as long as I could function at work with no pain.  

And then... my antibiotics ran out and BAM!  WHERE IN THE HELL DID THIS PAIN COME FROM?!?  I mean, I was feeling better.  What happened?!?  This deep aching pain returned, now in both ears, and worse.  

I scheduled another appointment and whimpered when another $50 left my account.  She grabs the otoscope again and almost jumps back the moment she sees the inside of my ear.  "Lauren!  This has to be the WORST ear infection I have EVER seen!"  Ok, I'm concerned.  But hey, I've always had severe strep.  I was used to shocking the doctor.  And I knew that z-packs didn't work on me anymore after the many years of strep.  Maybe I just needed a stronger drug?  So I picked up my prescription for Augmentin, and again, Prednisone.  

So I'm feeling better again.  Ok!  This regimen is working!  Woohoo!  
Guess again.  
As soon as my meds run out, the pain returns.  Worse than last time!  
The pain is too bad and now interfering with my performance at work.  I call the doc to find out what I should do.  There was quite a bit of concern in her voice now as she told me that this had gotten too far out of her range.  I would need to see an ENT.  

Do you know how much it costs for just an initial consultation with an ENT if you don't have insurance?  Well, if not, let me tell you.  

About $300!
And that's not including any tests or meds.  That is simply the fee to TALK to someone.
AND... good luck getting an appointment if you are a "new patient".  Every ENT office in a 50 mile radius told me the earliest opening was AUGUST.  C'mon!  It was still the beginning of JUNE!     

So I decided to see another primary care doctor instead.  Hey, maybe I just needed a different prescription?  I made an appointment with a doctor in a town about 15 minutes away.  I walked out with a prescription for Levaquin and (you guessed it!) more Prednisone!  

I got to Sam's Club to fill my prescriptions, and the Levaquin was going to cost a couple hundred dollars because I had no insurance!  At this point, I was so overwhelmed an emotional.  The pharmacy called the doc to find out if there was a generic he could recommend.  The doctor ended up calling me directly.  I explained that I didn't have insurance.  But Levaquin was the only option, there was no generic.  What was I going to do?  After a few moments of silence, the doctor told me to come back to the clinic and that he would take care of it.  Confused, I obeyed and returned to the clinic.  I walked in to the clinic, and he met me at the door with a brown paper sack.  Inside, there were enough individual samples of Levaquin to make an entire prescription's worth.  I realize now, that the medical field needs more people with compassion just like this.  It makes all the difference.  

Maybe by now you are catching on to a trend?  If so, you could also probably guess that I felt just fine during this medication regimen.  And immediately when I was finished, I FELT AWFUL!  Again.  

Would this ever end?   

Is brevity really the soul of wit?

This is me. 
Spring 2010.



Wrapping up my second year at The University of North Texas,  I was on the fast track to graduate college in 3 years with my Bachelor's in Hospitality Management. 

I was a resident assistant in the largest dorm on campus and involved in many different organizations between UNT Housing and The School of Merchandising and Hospitality Management. 

Here is a photo of one of the RA staffs that I worked on!


Our staff was crazy, fun... My boss said we spent so much time together that it was sickening!  Haha. 
But I couldn't get enough of this group (some are not pictured here).  I love them all so much!

Anyway, I spent my undergrad days (basically all of them) with these people.  We put on programs for students in the hall, we led fundraisers, and we encouraged students to get involved in campus life.  These are the student leaders on our campus! 

Of course, it wasn't all fun.  We worked on-call shifts.  Some of us got the pleasant experience of dealing with drunk, underage residents.  Some cleaned up vomit in the lobby or poop in the elevator.  I'm pretty sure we all have had to supervise a roommate mediation because a resident didn't like what time her roommate came home, or a resident didn't like the music his roommate played.  Then there were those memorable times when we had to tell some of our residents that their sexual activities were too loud and disturbing the rest of the hallway.  Our residents kept us so engaged and in the dorm so much that it was no wonder we spent all of our time together! 

At the end of spring 2010, I decided to go on a summer study abroad trip to Hong Kong, China, and Macau.  This was the first study abroad trip for the Hospitality Management program and we had a whopping total of nine students. 

This is our group right after we landed in Hong Kong.



I ate some crazy things



Saw some... unusual things



Did A LOT of walking



almost there!



finally made it!



and... we BROKE DOWN IN THE MIDDLE OF NOWHERE!


This guy came to the rescue.. kinda.  Haha.




Anywhoooo.... moving on.

When I got back from China, I spent the summer working... A LOT!
You see, I have been working since I was 15 years old.  My first job was at a timeshare resort in the activity center.  Starting at the age of 15, I worked full-time, sometimes pulling 56-hour weeks.  I was there morning to night.  

It was then I discovered one of my many truths.

Hello... My name is Lauren.  And I am a workaholic.

However funny or silly that sounds, it's the truth.

I worked here throughout my high school career and, twice throughout high school, I kept two jobs (in addition to taking college classes)!  Can you say posterchild for overachiever???  That was me.  In college, I would come home every break to work at that timeshare resort and save up some money for school.  I never just came home and enjoyed my break or took trips.  It was all work, no play.  Man... did I have my priorities wrong!  

Sorry, I tend to go on tangents.  Where was I?  Oh yes... that summer.

So the summer after getting back from China, of course, I went straight to working full-time at the resort.  Now, I was the Assistant Front Desk Manager... checking members in to the resort, hearing out each dramatic complaint, and supervising the staff in the chaos of the summertime crowd.

This is where things start to probably seem more relevant to you, since this is supposed to be about me having Wegener's.  I know Ms. Casey, "brevity is the soul of wit!"  The dreaded quote from Shakespeare's Hamlet that would always managed to end up at the top of my papers in bright red ink. 

But now that you know some background stuff, maybe we can move on?

Let's Be Honest Here

Telling my story.  It seems so overwhelming, so ongoing, so... long.  For the longest time, I have had the idea in my head (and so many people have told me) that I need to write a book.  People would read my story, and it would change their lives.  

Often, I ask God why this happened to me.  Not so much of "why, oh why me?  Woe is me."  More like, "what purpose does this have?  what do you want me to do?  how do I bring you glory in this?"  (I won't lie to you though.  That whole "why, oh why me" bit happens... from time to time). 

Most of my life, I have been a planner.  I write lists, I keep a tight schedule (most of the time), and in fact, one of my top "StrengthsQuest" strengths is Strategic (I believe it is actually my number 1).  It drives me crazy that I cannot just know what I'm supposed to be doing to be fulfilling God's plan for this whole thing.  I know, it's so silly that I would let that stress me out when The Almighty has it under control.  He knows the plan.  I will understand when He wants me to, and His timing is perfect. 

But...

One of my many flaws is that I struggle with just letting go.  You know, "Let go, and let God."
You see, what has happened to me didn't just happen and that was that.  It is happening.  It's constant.  Daily, I have this unsettling feeling.  It's like He's reminding me over and over again that He's not finished... That I'm not finished.  This story, this journey is far from over.  And He will receive the glory. 

I want to know HOW to do that!

I'll be honest.  This story isn't all sunshine and daisies and "they all lived happily ever after."  It's intense, ugly at times, and man did I go through (and still going through) some really low points.  I was and am still scared ALOT, I also had and still have a bad attitude ALOT.  But I'm working on it.  That is what partially fueled this blog. 

A book is so overwhelming to me.  "Baby steps" (words I have learned to live with) seemed to be the best way for me to start.  And cue the beginning of Lauren's Blog.  Hey... maybe a book is in my future (hopefully near future!).  For right now, blogging will be my outlet.  Whether or not I have any readers at all, I'm shedding my insecurities and I'm telling this story.  Raw and real.  The good, the bad, and the really (and I mean really) ugly.