Posts filed under ‘Chiari malformation’
This weekend, while waiting for our older children to finish baseball practice, a few of the “fall ball” moms were chatting and getting to know each other. This is pretty typical of any sports season, as we are all going to see each other many times over the next few months. However, for me, this conversation was anything but typical.
In the course of the chat, one of the moms mentioned her daughter’s early medical troubles, and in that strange way where one just knows what is coming next (does that happen to anyone else or it just me?), I listened to her describe my condition.
I suffer from a congenital defect called a Chiari Malformation (pronounced kee-AR-ee) that was discovered in my case after a hospitalization two years ago for something completely unrelated. In many cases, symptoms continue to worsen over time or seem to be triggered by some event. In my case, both. Others live symptom-free forever. A great description of the symptoms and nature of Chiari Malformations can be found at the NINDS website.
In the last two years, I have met several other people with Chiari Malformations. One I found online and then realized we both belong to the same mothers’ group. One is the daughter of the massage therapist my husband gave me a gift certificate to for Christmas 2008. Yet another is a friend of my parents’. And now a little girl at the baseball field. Random strangers with a rare connection.
I watched that little blond girl, all of 5 years old, who had been through brain surgery at 16months and was running and climbing and carefree. I am so glad she had the opportunity to have a great surgeon available at Cincinnati Children’s Hospital who knew about such a rare condition and were able to get her help quickly. Truly amazing!
I don’t often post on the topic of my condition, but sometimes it hits me. This was one of those times.
Until next time…
I’m still trying to catch up around here. It’s amazing that 3 weeks of being sick can mean almost double that in catch-up time. My “to-do” list is out of control. Since the last time I made it here:
- I finished a magazine assignment
- “Mount Laundry” is no smaller than when I started washing it. (How do all these clothes get so dirty this fast, anyway?)
- We went to our hometown for Easter to do some family visiting.
- The kids participated in no less than 3 egg hunts while we were there. We will still have candy left next Easter.
- I have not yet stooped to secretly stealing my favorites from the kids’ baskets. My own stash is still being carefully rationed.
- I’m steadily planning our Disney vacation, even though it’s not for months. I’ll be going non-stop leading up to the departure, so it’s now or never for the planning stage.
- Kid 3 has successfully stayed dry since awakening this morning.
- I’ve been changing diapers for almost 9 years straight.
- Our old dinosaur computer finally gave up while I was sick. PSA: automatic backups only work if the old pc transmits the info to the backup hard drive. Lesson learned. Pictures were recovered, but emails from the end of Jan. to mid-March are gone.
- Cool file of my work to be seen in stores soon has disappeared because of the aforementioned crash. Luckly the Clearsnap folks are top-notch, so I think I can get another copy. I’ll post when I get it again
- No fewer than 3 people ran by my window this morning in the drizzly rain. Since my Chiari 1 malformation diagnosis in September, I now understand it doesn’t hurt everyone else to run. But seriously, I can’t understand the pleasure of getting soaking wet while I exercise.
- Rain has broken for a bit, so I’m taking the kids on a walk. I should have started my 30 Day Shred workout today, but I’m feeling too lazy. At least I’m getting outside, right? And I won’t be wet.
Until next time…
It appears I have completely missed Spring.
When I got sick 3 weeks ago, the trees outside still had bare branches and the tiny tips of green leaves were just popping through the ground. Skies were overcast, and the midday temperatures were barely hitting 50. If we were lucky, we could wear our light jackets in the afternoon instead of the heavy winter parkas.
While I was in quarantine (NO ONE wanted to be anywhere near my germs!), time froze. The blinds were pulled down to accomodate my 20 hr./day sleep schedule, and the weather outside was none of my concern. After my two weeks of solitary confinement, I spent another week trying to shake the residual exhaustion and wacky Chiari side effects.
By the time I finally made it out of the house and shook my head to clear the cobwebs, what did I find? Blossoms falling off the backyard pear trees, droopy daffodils, and a forecast of snow! Here in Ohio, that means that spring is over and we have moved on to the least popular of our seasons, “Mud”, which has already caused the cancellation of 3 baseball practices last week alone. “Mud Season” isn’t nearly as pretty as the flowers. I feel cheated.
On a side note, I’m coming up on the 12 month mark of this incident that seemed to start the plague of lousy health I’ve gotten stuck with this year. I’ve decided that upon reaching this noteable milestone, I’m passing off the black cloud to someone else. The dratted thing wore out it’s welcome rather early into it’s stay with me, and has rather impolitely refused to leave. I’ve had quite enough thank-you-very-much. Time to go.
Now, I’m off to enjoy mud season and all it has to offer. Good times.
Until next time…
Away! Far away!
Without the kids!
Fun..sun…sandy beaches…our 10th anniversary trip to St. Thomas was fantastic. After we got there, that is. I wasn’t notified beforehand that we’d have to fly in on this little gem
to get to the island. I’m not very fond of heights, and frankly, this plane is a bit too small for my comfort. Large planes are no problem, but in this tiny 10-seater (including the pilot!), I could feel every roll, bump and dip the plane made. My palms were sweaty. We landed in the dark, on a runway that started about 6ft. from the ocean. Nothing like starting your vacation with a panic attack!
As usual, we got lost in the dark on our way from the airport to the hotel. Happens everytime!
Overall, though, we had a wonderful time. We stayed at a Marriott resort on the south side of the island. I’m always a sucker for the flowers.
We spent most of our time driving the insane roads that wind around the mountains at crazy angles in our cute little yellow jeep, and doing a whole lot of nothing at places like this:
at our hotel, or this (Magens’ Bay):
and came face to face with one of these guys:
a few too many times. One spent a full 30 minutes under my pool lounge chair before I could finally flee the area. I managed to keep my cool fairly well, considering the loud internal scream that was happening in my head. Turned out to be a good time for lunch. On the opposite end of the deck.
No photos of the scuba trip, though, I forgot to pack my waterproof camera housing. We did two dives that were purely recreational and fun reef trips, which when combined with the flight home, I’m still paying for in the form of a massive Chiari headache 10 days later. I guess I know now what diving will do to me. Totally worth it, though. I don’t get to dive enough.
Here’s a shot of us landing in Puerto Rico on the way home in that dinky little plane.
EEK! I’m much more comfortable underwater than in the sky.
It was a great trip, a wonderful way to relax and recharge. How long until Ohio weather catches up with the islands?
Until next time…
This is the first year I haven’t planned my costume down to the buttons weeks in advance. I love deciding what to wear, weighing the possibilities of coordinating with another person, and dressing up the 3 small people who also live in our house. This is also the first year the kids had their own opinions about their costumes, so I lost the battle for cute matching kid outfits this year. I was hoping to squeak out one more year, but no luck.
I’m probably going to pull out the old lab coat from the basement (a remnant from my former life) and the safety goggles from the garage, tease the hair, and pop a glowstick in the coat pocket for a makeshift mad scientist. Quick, easy, and done.
The news from my neurosurgeon yesterday was a little more interesting than I had hoped. Looks like I’ll be doing a little more testing and research, a little sooner than I anticipated. OK for now though, so I’ll be thankful.
Time to dive back into the craziness that is my life. I hope your day is filled with treats instead of tricks, and that your kids get all your favorite candy in their buckets tonight!
Until next time…