I Survived Stevens Johnson Syndrome

So my readers (all three of them) have probably noticed that I have taken a fairly long hiatus from the good ol' blog.  Kell's Belles was completely lame in February.  (It's pretty lame in other months as well, but this last month was particularly bad.)

Honestly, I was hoping to blog some sweet pics that I took of the vacation I took to Arizona to visit my parents (with Chloe) in mid-February. Unfortunately, said vacation turned into a complete nightmare within about 36 hours.  I had to wake my parents up at 3:30 AM to ask for a ride to the ER (which horrified me to no end--your 32-year-old offspring will STILL be waking you up in the middle of the night due to illness? Is there no end to this madness?).  True to form*, I got sick right before my trip and the bronchitis I had been treated for at Urgent Care earlier in the week had morphed into pneumonia.  I was having an allergic reaction to one of the 50,000 drugs I was taking in attempts to control my symptoms and get some sleep.  Seriously, I swallowed a medicine cabinet that night (which makes for a super fun admittance process in the ER.  "You took what?" x50!  I feel they looked down upon just slightly less than the inebriated homeless man barfing and requiring stitches in the next room).  I have been to the ER one other time in my life**, so this was serious business.

My dad was kind enough to give me that ride.  Little did he know that he would be sitting by my bedside at the hospital for the next three days.  The upside of three days in the hospital?  Morphine and Ativan.  The downside?  Everything else.  This was not a great hospital.  The nurses ignored most of my complaints.  They brought people in to practice doing IVs on me.  They never delivered the flowers my mother-in-law sent.  Oh, yeah, and they failed to properly diagnose and deal with the potentially deadly syndrome I developed on Day 2 of the stay.  True, one of the doctors said he thought I might have Stevens Johnson Syndrome (WARNING! This link is totally gross, so only click it if you're really curious and there are no kids in the room), a delightfully bizarre reaction to something (a virus? drugs? They don't know!) that attacks mucous membranes and causes a crazy bad rash.  He did get me in a private room just in case I had it.  That was good.  My roommate was not exactly delightful company.  Unfortunately, the doctor that saw me on the next shift dismissed the other doctor's idea and I never got treated for SJS.  I kept getting sicker and sicker (thrush, UTI, eye infections), but thanks to a few breathing treatments (plus IV steroids and antibiotics) the pneumonia went away.  So that was good.  On the the third day I begged my dad to get me out of that awful place.  He managed to spring me with a lot of sweet talk to the doctor on duty (the man is a brilliant salesman.  Seriously, if you have to be in the hospital, you want my dad for an advocate!).  Of course, we had to basically buy out Walgreens  and get 20 prescriptions.  But still, I got to go "home." My discharge papers said I had a sore throat***.  Uh, what?  Just another example of the thoughtful care I received****.

The tamest of the self portraits I took of myself in the hospital.  Email me if you'd like gorier ones. As the series progresses, my mouth swells up to 12 times its regular size and that lovely rash just gets worse!  Yes, I totally played with my iPhone the entire time I was in the hospital.  And if I texted you during my stay, chances are I have no memory of what I said.  Or even of doing it.  Sorry!  It was the drugs!

I was in such bad shape that I had to wait a few days before I could travel back to my actual home.  Carter was able to get the extra days off work and handle things at home, which included Sadie getting a double ear infection.  Nice! (His fabulous company even sent get well flowers to my house, so I actually got them. So kind!)  I recuperated as best I could.  I couldn't eat because my mouth was filled with fungus and painful sores from SJS.  I lost 12 pounds.  (Sidenote: I'm good at finding the silver linings.  I'm still trying to look at this whole ordeal as a weight loss opportunity.  SJS = highly effective way of getting rid of those stubborn holiday pounds!)  I couldn't sleep because my horrible eye infections and painful sores kept me awake--the one thing the doctor who discharged me from the hospital DID NOT prescribe was pain medication.  I was in abject misery.  My parents took good care of me and Chloe.  After three days, I was able to fly home (Michael Jackson style):

 Me, sitting in the Phoenix airport.  Like how I tried to use pearls to cover up my rash in public?  How's that for styling?

People treated me like a leper in the airport.  I've never gotten through security so fast!  Chloe even walked a few paces behind me.  I don't blame them at all.  I was in bad shape.  The flight was quick and painless.  (Although one annoying flight attendant asked if I was sick.  Uh, ya think?)  Carter picked us up with Piper, Sadie, and Tessa in tow.  I had missed them all so much so I was really glad to see them.  Tessa took one look at me and said, "Mommy needs a Band-aid!"  We started driving home.  After about six miles of listening to Tessa cough, I realized just how sick she had gotten while I was away.  I knew, deep down, she had ear infections.  I immediately phoned the pediatrician (who is on speed dial) with my trusty iPhone and finagled an appointment (of course it was Saturday and of course they were closing in a half hour).  We drove straight from the airport to the doctor.  Carter ran her in while the rest of us waited in the van and, sure enough,  she had two infected little ears.  (Yes, we're due to get our tubes replaced.)  I couldn't believe our luck.

We survived that miserable weekend.  Carter took Monday off so that I could FINALLY see someone about the raging eye infections the hospital completely ignored the entire time I was there. Seriously, I couldn't even see anymore!  The opthamologist I saw seemed pretty alarmed (mainly by my appearance, but I'd like to think the lack of care I got in the hospital for my poor little eyes factored in as well to that look of horror as well).  He was certain I did have Stevens Johnson (the mucous membranes in my eyelids were the root of my problem and looked just as you would expect someone with SJS to look).  He commented on how lucky I was that I had such a mild case and emphasized just how ill I really was.  And that I should never, ever, under ANY circumstances, go to a hospital if I ever had an eye problem.  He said they are notoriously dangerous place for your eyes as they tend to get ignored.  Live and learn.  Unfortunately, my eyes were in really bad shape.  It's possible permanent damage was done and that I'll never be able to wear contact lenses again.  (I can't even deal with that thought!  I HATE wearing glasses!)  He prescribed treatments and more follow up appointments.

It's now been three and a half weeks since my "vacation."  I'm still struggling with my eyes (seriously, you should see me typing with my face right next to the screen!), but I'm still seeing the opthamologist regularly and hoping we'll get it all sorted out soon.  I feel pretty lucky now that I've done more research on SJS that I'm not having too many lasting effects (this list of side effects is so terrifying it's almost funny!).  I also feel blessed to have had so much help from our family (which to me includes blood relations, dear friends, and church members).  I can't believe how many calls, cards, meals, messages, and help our family has received.  I'm busy healing and trying to get our lives back in order.  I'm amazed at how fast my poor body has put itself back together after such a difficult illness. 

So, that's why I haven't been blogging.  And after this gross post, you're probably sad I'm back!


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*I ALWAYS get sick before trips.  See here and here for evidence.

**The first/last time I was in the ER was 2006.  In Kauai, naturally, on a family vacation.  I had a fever of 105 from mastitis.  My dad had to take me back then as well.  I really owe that man.  They were able to treat me and release me immediately.  So this was my first non-baby related hospital visit EVER.  And the first time I stayed for more than two days.

***I am in our ward's primary presidency.  The wonderful gals I serve with brought me dinner on that first miserable weekend home.  One of them is a nurse.  She took one look at me and asked if I had Stevens Johnson Syndrome.  See, it's not THAT hard to diagnose!

****Do yourself a favor and don't get sick in Phoenix, AZ.