Wednesday, November 5, 2014

points to hit on 11/??/14

  • at least I know the month and the year, right? ^^^
  • what happened yesterday:  I woke up with no vision in my right eye and an awful headache.  As soon as my neurologist opened (8:30) I was there.  Like, waiting at his door (so stalkerkish).  The nurse sat me down in a back room and I cried and cried because I thought for sure my eye was coming out and my head was just.... are there words for debilitating migraines?  If there are, swing some my way because I have no idea how to describe them.  Anyways he gave me a medication to try-can't remember the name- I tried it.  It zonked me out.  I woke up sometime after my kids were home (obviously Ryan was running the house yesterday) and was super disoriented.  I was thinking it was morning and the kids were at school, blah blah blah..  Long story short, it was like 3 PM and the kids were home, and I was incredibly confused.  I walked out to see what was going on and realized the vision in my RIGHT eye (it's always been my left) was weird- hazy- a little "buzzy" if that makes sense?   And within MINUTES, it went out.  Everyone always asks "whats went out mean?"  Went out to me is where I have to put my hand over whatever eye it is because I can't see.  There's light- not complete darkness- but no shapes- no space orientation whatsoever- just yellowish colors.  Also no peripheral vision.  It's very freaky.  Since this has happened before, I didn't immediately jump up and yell "ER!"  We called my neurologist (whom I had seen that morning) and he said if my headache was too severe to treat at home and my pulses were higher than 90, I needed to go into the ER.  Both were true.  Around 4:30 Ryan dropped me off at the ER (with  I felt like the worst mother.  "Bye kids!  Going to my second home!  Have fun with daddy tonight!  Oh and Ryan?  Pick me up around 7!"  I mean this has just gotten BEYOND ridiculous.  I fixed an ice bag/pouch over my right eye and was feeling around with one hand trying to make it to the window of the ER.  Someone had mercy on me and gave me a wheelchair.  No clue how much time passed, but soon enough I suppose I was in a room.  I was on my side, pressing the ice pack into my eye.  A nurse came in first to ask some questions... and then HE came in.  I know his name because I've filed a complaint, but I won't use it on here.  He'll just be referred to as the a-hole.  Because.... I hit rock bottom last night people.  Rock.  Bottom.  So there I am, no vision in my right eye, already crying because I was upset about where I was.  I wanted to be home with my family.  My head was pounding/exploding.... and then the ahole walked in.  I couldn't see very well (obviously) but he was short.  And had his arms folded across his chest.  He leaned against the wall and without any kind of introduction (or even an, "are you Ashley)?  started peppering questions at me.  In my right state of non-exploding mind, with two good eyes I might have handled the whole thing differently.  But last night, all bets were off.  I could keep up with his smart ass and he continued asking "Why are you here though?  You want me to give you pain medicine?"  I thought I had answered that question 3000 times.  "DOCTOR.  I LOST MY VISION THIS MORNING AND SAW MY NEUROLOGIST.  I JUST TALKED WITH HIM.  HE SAID IF MY PULSES WERE OVER 90 AND MY HEAD WAS TOO MUCH TO TAKE AT HOME TO COME IN.  DO YOU WANT ME TO LEAVE?"  And the ahole without blinking shrugged his shoulders and said "No, you're welcome to be here.  We're open 24/7 for people like you.   You can come whenever you want."  
-que MAJOR waterworks.  To the point of where he left the room...  Oh wait- I called him an ass hole first.  And then he left the room.  It went something like this:
Him:  "So you want strong pain medicine?"
Me:  "NO.  I have pain medicine at HOME.  I can walk out right now and go pop some pills.  That's the problem.  The problem is I can't see and my heart rate is high.  I feel like I'm having a freaking stroke.  Can you check my eye and tell me I'm not having an ocular stroke?"
Him:  "So let me understand this.  This isn't the first time this has happened?"
Me:  "No."
Him:  "And you saw your neurologist today and he said you're fine?"
Me:  "He said I was fine this morning to go home and take a medication.  When I called him back he said if I felt I needed to go into the ER, then that's what I should do."
Him: "But you said you've lost your vision like this before.  And you're being worked up for MS."
Me:  "Yes."
Him:  "So, what exactly do you want me to do?  You know its not a stroke.  You know you have MS.  This isn't an emergency."
Him: "Okay"

And just like that he left the room.  Not an "I'm sorry, I didn't mean to upset you.  I'm sorry that MS comment might have been a bit offensive.  I'm sorry, I see you're scared, let me just look into your eye to make sure there's nothing going on back there.  Nothing.

I got on the phone with my dad ( because dads fix everything) and he said he was on his way.

Then the patient coordinator (???Not sure of her title) came in and asked what the problem was.  She took it very seriously.  I filled out a form to the best of my ability, although I couldn't see much so in the end she gave me the email I'd need to send a formal complaint. She also gave me the option to switch doctors- which I said HELLLLLLLLLLLLLLLYES.  So she sent a nurse in to start all of that.

And then the ER blew up.  And I got lost in the shuffle- and that's okay- I realize there are people there with heart attacks, REAL strokes, etc and Ashley McKenney is not first on the list.  So when ahole walked back in the room an hour later, I wasn't super surprised I had slipped through the cracks.  BUT- my dad was there.  And I felt like this "doctor" could do or say anything... I had Goliath behind me :)

So as ahole ran down the list of things with my dad, I started to say something- I can't remember what it was- something like "I told you..." And then my dad cut me off. 

"Sweetie?  I'm going to talk for you now.  (instant flashback to like 2nd grade)....  but as I laid on the bed bawling, in pain, I surrendered.  And my dad rubbed my head and said, "Listen.  I see you're wearing a wedding ring.  You have a wife, I'm assuming?  Maybe kids?  Would you want your loved ones treated like this?  Are you giving her the kind of care you'd give your wife?  This girl, my daughter, (and here I am crying even harder now), has been through hell in the past 8 months.  She's learned to catheterize herself.  She's had painful tests, numerous hospital stays.  She's passed over 15 kidney stones just this summer.  She is exhausted.  We're all exhausted.  And all I want from you is to treat her like you'd treat your wife or daughter.  So give me that, doctor."

Ahole took a minute and sighed, then said, "I'd start her on steroids for her vision loss.  And monitor her overnight."

Okay- we were getting somewhere. 

They started an IV and I just couldn't stop the tears.  My dad asked if I wanted a colder wash cloth to put on my eye- I said yes.  As soon as I took the wash cloth down from my eye I noticed blood.  "Dad??  Is my eye bleeding?"

He came over and looked in, and said, "Yeah.  I'll grab the doctor."

Nothing panics my dad.  Nothing.  It was incredibly odd to see him out the door in a flash and back in with the doctor, flipping on lights to look into my eye.

Sure enough it was bleeding.  Ahole said it was coming from the bottom lid because I had scratched at it too much.  Again, my dad said "I'd like her to see an ophthalmologist.  Or get some kind of imaging so we know something isn't happening with her retina."

Ahole decided to put his two cents in, "You know, this is classic MS.  CLASSIC MS"

I continued to cry (if you've ever wondered how many tears you have... its a lot)

My dad told him that nothing has been ruled in or out yet and if need be, he'd drive me up to Jacksonville to get the proper imaging.  And then "miraculously" there was an ophthalmologist on call!  Imagine that.

I was admitted, and was seen by the kindest, most gentle ophthalmologist on the planet.  He understood the pain of shining lights into the "bad eye" and he took so much time with me, patient to get everything he needed.  Indeed, my retina was swollen and inflamed which he said PROBABLY produced the bleeding.  BUT there was nothing anatomically wrong with my eye- meaning the eye itself was healthy, Retina attached, no disease, etc.  Just swollen and inflamed which can be signs of MS OR a very sever ocular migraine.  Can I tell you how confusing this medical stuff is?!?! 

Anyways, I was given sweet, sweet pain relief all night but an angel of a nurse.  My mom and and sister came and sat with me until I fell asleep.

This morning, Ryan was there and we ate breakfast together.  We saw the same gentle, sweet, ophthalmologist again and this time he had great news for us:  The retina was fine- super healthy and he was pretty confident with ruling the entire thing as super bad migraine episode.    He gave us the all clear to go.

But as we all know too very well now, being released from the hospital requires 30 signatures.  Ryan left to pick the kids up from school and get dinner stuff.  And I had yet to see "THEE doctor"- the floor- doc who has control over who leaves and stays.  Around 2 or something she came in and said I could leave (HALLELUJAH!) and she'd get my discharge papers going.  And then my phone rang- the hospital phone.  It was Dr. Soto (the floor doctor).  She had just reviewed my blood work and noticed my liver panel was incredibly off. 

I told her "Yeah, I've got a really large legion on my right lobe.  I'm actually getting it biopsied this Friday at Baptist."  She wanted to draw more blood to make sure certain enzymes were at least stable and not on the rise.  Someone came and poked me again... gathered my blood, and I texted Ryan saying "don't get your hopes too high.  Blood work came back bad."

Around four she called back and said as long as I was going in for this liver issue on Friday, as in two days, she'd be okay with letting me go.  I promised I'd keep the appointment (should've kept it like a month ago...whoops).  I'm also banned from a giant list of medications- and you'd be SHOCKED at what can be sold over the counter, that can potentially cause this kind of liver damage.  It's terrifying and so sad.  I've literally been led like a blind sheep.  Listen people:  Acetaminophen?  It's not just a fluff warning they put on packaging.  It's real.  And it's caused damage to my liver.  I know this because I used to take tylenol like candy.  Any ache or pain or hangnail, 2 tylenol!  Can't sleep?  2 tylenol PM's!  I mean, I lived like this for YEARS.

 And I'm paying the price now with four little sets of eyes watching me. It's sickening.

 So yes... this Friday I go BACK in the hospital.  I'm terrified.  My liver hurts.  It HURTS.  That can't be good, right?!?!  Like you know under your ribs?  The entire area is tender and throbs.  So even if this is nothing to be concerned about, it's causing pain, which is going to have to be addressed eventually.  I mean.... I feel like I am stuck on the most disgusting merry-go-round.  And I CANNOT GET OFF. 

  • that was a huge bullet mark ^^^
  • In a couple of weeks, after the liver mess, no matter what the doctors come back and say about it, Ryan and I have made it a mission to take the kids SOMEWHERE- for a few days.  They deserve it.  Ryan deserves it.  Sometimes I feel like this sick rag doll that gets pulled around. limbs constantly falling off, having to be sewn back together.  Just a complete mess.  A job.  And not a fun one.  I am a job- that's the best description.  haha!  And everyone- including myself- needs a break.  So, we're going somewhere.  I don't know where.   But it will be a place to laugh, smile, run, drink sprite and chocolate milk, eat dessert late at night in hotel rooms, rent kid movies and lots of king sized bed cuddling with our babies.  
  • Stella just walked in our room, turned the bathroom light on, peed on the floor, shut the light off and said "I'm so sorry mom." And then retreated to her room.   Like that really just happened.
  • I am now logging off to clean up our bathroom.

Thank you friends and family for prayers and thoughts.  Thank you YL girls for my beautiful flowers that made me ugly cry. 

xoxo, Ash

No comments: