So here’s the bottom line: meningitis/encephalitis sucks. It all started a month ago and I’m still not entirely right, which is frustrating, but I’m trying to get back on track a little more each day.
Now for the back story (warning: some of this I actually remember, some if it I’ve only been told by my family, because I wasn’t “here” for about 3 days during this 2 week period…and I’m sure I’m leaving stuff out and muddling other things, but you’ll get the gist!)
Tuesday April 21st: At some point that morning I realized I had a headache. I felt okay when I went and ran with my bootcamp girls that morning (3 miles) but as the day went on I developed a headache. I took some Excedrin, which normally does the trick for me, but to no avail. Finally around 2pm my boss Mark told me to get out of there and go home and take a nap – I looked as bad as I felt, apparently. I was functional, just ineffective. I talked to Dad that night, mentioned I had a headache I wasn’t able to shake, and I thought I might be coming down with a bug or something. Looking back now, it’s ironic – I had no idea what was coming.
Wednesday, April 22nd: Woke up to the alarm at 4:45 (for bootcamp) and knew immediately I wasn’t well at all. My head was killing me, but I didn’t realize just how bad it was until I went into the bathroom and turned on a light. I immediately thought I must be having a migraine, with the light sensitivity. I sent a text to my coach to say I wasn’t well and wouldn’t be there, then went back to bed. My plan was to go into the office and see the doctor there at 8am when he arrived. By 5:30 I knew that was a pipedream – I was in way too much pain to wait that long, and I couldn’t possibly drive myself anyway. Alex woke up around that time, as did Martin. I told him I was worse and that I needed to go to St. Mary’s, but couldn’t drive and didn’t think I could walk over, even though it’s only across the street. We decided to leave Alex and the other sleeping boys for the 2 minutes it would take (literally) for Martin to drive me to the door of the ER and come back home. (And that should tell you how desperate I was!) I checked in a little before 6am and they took me straight back to an exam room, where they doused the lights and kept the door closed. My temp was 102.7, I think – I know it was close to 103. I hadn’t even realized I had a fever; I was so distracted by the pain. I kept shushing the staff when they talked to me louder than a whisper. They did a CT scan, blood work, and urinalysis and then started an IV for pain and fever control. Dilaudid is my friend. They finally let me go after about 6 hours, with prescription Motrin and a painkiller called LorTab, and said I needed rest, sleep, fluids and to keep my fever under control, and to come back if I got worse, or see my regular doctor the next day. The doctor talked to me about doing a lumbar puncture but ruled it out when the blood and urine came back relatively clean (I think a few things might have been slightly elevated, but not alarmingly so…the diagnosis was ‘virus.’) So I went home, slept all afternoon in my narcotic-induced stupor, and talked to my mom (the nurse) that evening and filled her in on what was going on, what meds I had, etc. I also talked to my Dad at some point that day; he’d called the office to see how my head was and when he didn’t get me, called the house.
At some point overnight between Wednesday and Thursday April 23rd, things got bad. I began vomiting every 45 minutes or so, which was excruciating given how painful my head was again. I couldn’t keep down my medicines. What I didn’t realize and don’t remember even now is that Martin was up with me every time I was up being sick. He kept trying to talk me into letting him call one of my girlfriends to come stay with the boys so he could take me to the hospital, but I wouldn’t answer him. I’d just shake my head and go back to bed. Towards morning I started doing other weird things, like I tried to fill a Dixie Cup to rinse my mouth and I held the cup 3 inches to the left of where the water was, and just waited for it to fill – I couldn’t tell I wasn’t close. I was kind of checking out, so to speak. My mom called around 8 to see how I was doing (or Martin called her, I’m not sure) and when he told her I’d stopped vomiting and had been asleep for several hours she told him he needed to go wake me and see how I was, and call her back. I was still out of it and not really communicating, so Mom left work and rushed the 65 miles between Charlottesville andRichmond to get here. I do remember Martin waking me up a few minutes before she got here to say she was coming to take me back to the hospital, and I remember her arriving and getting me to the car. I remember getting to the hospital, I remember the second CT scan in 24 hours, the chest films and I VIVIDLY remember the lumbar puncture. The next thing I remember was my Rector, Chuck, talking to me, sometime around 5 or 6pm on SUNDAY afternoon, April 26th. I lost the rest of Thursday, all of Friday and Saturday and most of Sunday. *Poof!*
From what I’ve been told by various family members, here’s what happened once I finally checked out of my head on Thursday morning in the ER:
The spinal fluid was clear (I remember the doctor saying that during the procedure) but when it came back from the lab an hour or so later my white blood count was elevated.. The doctor said they were admitting me under isolation, with probable encephalitis, possibly meningitis. (Isolation meant anyone who came in had to wear a gown, mask, gloves, etc.) It took hours to get me a bed up on Neuro and get me moved (I think it was late afternoon or early evening by the time that happened.) Meanwhile my Dad came up to stay with the kids, and I think he eventually took Andy and Alex home with him that night to get them out of the house. One of my 2 best friends, Regan and her husband Dan, were either at the hospital or at the house with the kids over the next few days, so Martin could go back and forth. (Thank God they’re retired!) Sometime late Friday my step-mom Katie (whose first career was as a nurse, though she isn’t working as one now) got in from
Montana and she spelled my Mom so Mom could go sleep – one of them was with me around the clock, with Dad and Martin in and out. Friday was apparently a very bad day – the IV they’d started in the ER fizzled out, so they decided to put in a PICC line, which didn’t work. They finally brought in anesthesiology and put in a central line (in my neck.) That took much of the day, but in the interim they weren’t able to hydrate me or medicate me (they’d started me on about half a dozen different antibiotics, not knowing yet whether this was viral or bacterial, or fungal – they were covering all the bases because apparently the first 36-48 hours are critical with ecephalitis…) Late Friday night they finally got an MRI – I fought them the first time, and they finally put me under, intubated me and did it under anesthesia apparently. They tested me for dozens of things – various equine flu’s, various fungal and bacterial infections, you name it. The list of labs on the itemized hospital bill I got this week was shocking.
By Sunday the 26th enough lab results had come back that they knew it was viral and not bacterial, so they lifted the isolation. During the 3 days I was ‘out’ I’ve been told that I would “wake up from time to time” but I wasn’t really responsive. I would sometimes tell them something (like I was dizzy, etc.) but I wouldn’t always answer questions and when I did, it was rarely lucid. Whenever they woke me up to try to do anything to me I’d fight them and say “No Mom, no! No Mom, no!” But basically, I was on another planet. My boss came twice on that first Friday, and he said in the morning I was just asleep in the bed. When he came back after work to check on me he said I was awake and they had the head of the bed raised up. He said I’d look at him sometimes when he spoke to me, but I didn’t respond in any way. Truly “the lights are on but nobody’s home.” Marcey and Regan have said much the same thing, as have my parents and Martin.
The first thing I remember after I really “woke up” late Sunday afternoon was that my Rector was there, and Martin and I think Katie were there. Dad and Mom both came a little later. My boss, Mark, and my friend Blakely came by that evening, too. Everyone seemed really happy to see me, and I recognized their relief (heck, most of them cried at one point or another.) I knew who I was, and where I was (if it was a hospital, it must be St. Mary’s) but I couldn’t believe it was Sunday night.
I stayed in the hospital the rest of the week until the last culture came back negative – and thank goodness it did. If it had been positive I would have had to have a port put into my arm and though I would have been discharged, I’d be going to the outpatient infusion center daily for another couple of weeks for antibiotics. But finally it came back negative, and they stopped the last drug – acyclovir, which is a really nasty antibiotic. They released me on Friday, May 1st. I spent 9 days there, not counting the 6 hours of my first ER visit the previous Wednesday. They never were able to pinpoint any particular strain of encephalitis/meningitis, nor do they know how I contracted it. It’s a mystery.
I was off work the following week, and under orders from the docs to take it easy (I had a neurologist, an infectious disease specialist and a regular internist…it was nuts.) Taking it easy isn’t a problem because I had very little energy and until the second weekI wasn’t really able to even read for any length of time because my concentration was still a bit MIA. My brain just feels sluggish – like it’s a weak battery. In the morning I’m in good shape because it’s been charging all night while I was asleep, but once I get up and move around, I start to wear out, and if I push it too much I get a headache. That apparently can happen for quite a while - the Neuro was vague about it. The second week I went back to work in stages: the first day for an hour, the second day for 90 minutes, etc. Everyone at work is being great, in fact my boss is watching over me like a hawk, he’s afraid I’m going to do too much too fast. I haven’t gone back to my morning bootcamp workouts yet; I hope to try next week but will just see how it goes. I missed my first Team in Training group run this last Saturday and will miss this weekend’s too (not allowed yet) but my TNT coach swears he’ll get me back up and running soon, not to worry. Overall I feel more like ME than I have in weeks, it’s just frustrating to wear out so fast and have so little stamina.
I think the worst part of all of this is that it scared the ever-living poop out of my parents and Martin. On the positive side, I’ve had a big fat reminder from God about what matters, and that reminder was shared by most of the folks who know me. There were literally people all over the world praying for me, thanks to friends and family who got the word out and asked for prayer. I know that my Rector and Assistant Rector (Chuck and Mario) were at the hospital frequently, and they brought me tremendous comfort, and I knew from them how many people were praying that I would be healed. And I was.
So there you have it. The inside truth about meningitis/encephalitis. It sucks. Don’t get it if you can help it, that’s my advice!
Marcey and I had a road trip on Sunday – we headed up I-95 to Potomac Mills and had a little spree. We started at IKEA where we both did some damage: I got a dresser for Jack’s room, and a new duvet cover and comforter for our bedroom. Marcey also found new bedding, which looks great. I haven’t unpacked mine yet and probably won’t until next week when I’m on vacation and have a chance to wash it all first. Photos to come, of course! After 2+ hours in IKEA we headed across the road to the outlet mall and grabbed some lunch before power shopping our way through the mall. We both ended up with a pair of shoes (though I struck out on pumps for work…I found the perfect ones at Nine West, but they didn’t have my size in anything but red!), I got some good stuff for the boys at Gap and for Jack at the Carter’s store, and everyone got a little something from Lego. I also loved the Ann Taylor outlet though by the time we got there we were both whipped and so we didn’t do more than a casual browse. We both picked up a great sweater that I’ll love for work, but I would have liked to have had the time and energy to take a closer look and try on some stuff. Next trip. Oh, and I scored an Easter outfit, complete with tie, for Andy at the Children’s Place outlet. The back of the Odyssey was stuffed by the time we got back to the car, between bags from the outlets, 2 big IKEA boxes (the dresser) and 2 totally stuffed blue IKEA bags for each of us.
