Medical Update

It’s been 2 years.  Can hardly believe it.  And at the same time, it blows my mind to think about how many more years (if it’s God’s will) that I will continue with this.  I’m in another round of screening tests to make sure that this dermatomyositis isn’t doing bad, bad things to me (yet?).  Had my full torso CT last Monday, and found out it was clear a few days later.  Need to schedule an ultrasound.  Going soon to have the field of vision test.  Got another order for a extra test at my regular blood draw. 

2011 has been a rough year for me health-wise.  At least at the beginning.  Dermatomyositis is a disease that you have to treat really aggressively; it’s very important to get it under control and keep it under control.  And if you hit it very hard with aggressive treatments, it’s possible to put it into remission.  In the spirit of hitting my disease aggressively, I started an expensive infusion treatment called IV immunoglobulin on January 31.  It was supposed to be four days of sitting and receiving an IV infusion of this medication over 3-5 hours a day.  It actually was a very relaxing (after the stress of getting to the hospital and finding out what was going on) experience.  I got to sit and work on the computer and surf the internet and talk on the phone.  But during the evening of the second day of treatment, I started getting a headache that just got worse all evening.  At bedtime, I took my narcotic migraine medication because I thought I’d need it to reduce the pain so I could sleep.  In the middle of the night (even on narcotic pain meds) I woke up in agony; Dan brought me more of the medicine.  By morning, Dan spent some hours trying to contact my doctors to get direction about what to do and eventually took me to the ER. 

A spinal tap confirmed meningitis.  This is a known, but rare, reaction to IVIG.  I spent the next few days in the hospital on pain meds.  Fortunately, IVIG causes aseptic meningitis, meaning there is no actual infection like normal meningitis (which can be bacterial or viral).  But there’s no way to actually prove you are not infectious, so I was in isolation (visitors had to wear masks).  The best way to tell is that aseptic meningitis only lasts 24-48 hours.  I went home suffering from a spinal headache, a result of the spinal tap, which kept me flat on my back for a week and a half. 

What happens if you have to step out of your life for 2 weeks? Chaos!  I got to watch a lot of tv, though.  More than I have watched in 15 years. 

The upshot is that I did get a benefit from the 2 days of IVIG that I completed.  My symptoms were almost gone for about 6 months even when I backed off a lot of the medications.  But overall, I wouldn’t go through meningitis again for anything, not even 6 months of good health. 

Loving my little boo

The perfect age.  All of childhood is a stage, and even this one has challenges, but I’m so enjoying 3 and a half.  Rose 3.7 is a cuddly momma’s girl (both a blessing and a challenge) who still speaks with a cute little girl voice and pronunciation uniqueness.  And she speaks whatever she is thinking.  She is potty trained.  (Yay!)  She just started ballet.  She is still fooled into thinking she’s playing a character on Super Mario Bros Wii if you just hand her a nunchuk. 

She loves to eat turkey shwamiches.  When she passes gas, she giggles and says, “I parted!” 

Quote from the car ride today:  “Mommy, tonight you have to show me how to braid my Barbie’s hair. Tomorrow I will be a big girl, and I will know how to braid her hair, but tonight I’m little, and I need you to show me how.”

Candyland is her absolute favorite game. She plays it whenever an adult will play with her.  She has great sportsmanship and is thrilled no matter who gets to the candy castle first because then that person has to invite everyone else to come to the party there.  “I’m going to win as fast as… a really fast person!”  The last time she and I played, she was also messing around with a tape measure.  She measured the side of the game board and said, "This is as long as a gorilla!"

She takes particular joy in telling or showing her sisters if she got something special that she thinks they didn't also get.  For instance, if we have one popsicle left and I let her eat it while the other girls are at school, the first thing that comes out of her mouth when we pick them up is, "Mommy let me eat the last popsicle!!!"  It never, never fails. 

I am going to be very sad to see this stage pass.  And glad.  I am so blessed.

Life

Absent for a month almost?  The first weekend it was because we had no power, and, hence, no internet.  120,000 of us had no power in our area after a short but vicious storm came through on Saturday night.  We’d gone to grandma and grandpa’s house to go to a world festival held in their town. We were eating a quick dinner when the storm blew through, making their electricity flicker.  And when we went down to the town square, it was to find all the tents from the festival being tossed in a dumpster and vendors trying to salvage what didn’t get blown away.  It was only after our 40 minute drive home that we got the sinking feeling as we saw no lights in our neighborhood and pulled up to a dark house. 

No power means no opening the garage door on our detached garage.  So, Spitz’ car was stuck in there.  Could be worse – we’ve had both cars stuck before.  The next day at lunch time Spitz’ dad brought over his generator, so our food only thawed for 18 hours or so.  Many of our neighbors had rolled out their generators immediately.  It’s very very common to own your own generator here as there have been like 4 major power outages in 5 years or so.  We’ve had one that was 6.5 days long.  Another that was like 4 or 5 days, and that one was during winter, so on day 2 when the house reached 50 degrees, we moved out to grandma and grandpa’s. This month's outage lasted about 2 days.

I got off track there, dreaming about the whole house backup generator I’d love to have (just like the one I saw being unloaded at a neighbor’s house on Monday morning).  The following weekend we went to my parents’ house in Ohio.  We try to visit them regularly so the kids will know everyone there well.  It was part of our deal when we moved here – a marriage compromise.  So, we were out of town that weekend, and Spitz was sick the whole time. 

Last weekend, we were busy celebrating May’s 10^th birthday.  She had her first slumber party, full of pizza and chicken wings and capture the flag and shrinky dinks and whispering after lights out.  It was a blast.  Oh, and the main activity was a movie they made.  More of a variety or talent show kind of thing, the giggles and the volume level got more and more out of control as it went on.  But now we are going to burn copies for each girl and mail it with their thank you notes.  I can totally imagine this getting posted to Facebook (or whatever there will be) in 20 years with lots of remembering and joking. 

I’m on a treadmill.  Every day has a schedule, and I move from event to activity, always watching the clock so I don’t miss the right time to leave for the next thing and planning what outfits, snacks, or hairbands will be needed for the afternoon.  School year activities are up and running and following the master plan on our kitchen wall, dutifully and regularly updated by me.  All under control.  But forgot to pencil in blogging.  (-: