Monday, 06 August 2007
-
Day 4
Jen writes:
So today’s big thing was meeting Julie, who got Steven’s Johnson Syndrome before she could remember (toddler). She was shy, but cute as a button (entering high school this year, too!). Her mom is very active in getting the word out about SJS even though she takes care of not only Julie but Julie’s little sister who has diabetes. Her younger daughter is 6 (or 7) and wasn’t feeling so good today, or else she would have gotten her picture taken today too. The great thing for dad was not only meeting someone else who survived SJS, but finding more souls with the same distrust of doctors!
Jean is the founder of the SJS Support Organization, and one of the school’s favorite mothers. She fights for what’s right for her daughters and comforts other people from all over the world who call in because they or a relative has SJS. While we were visiting, she must have gotten half a dozen calls. What a busy lady! She’s also thinking about organizing a walk for SJS in New York next year in August, a time when she knows everyone is out of school. I know I’d love to go back to New York…
Anyway, Jean says she’s done press conferences and interviews, but it’s really hard to educate the public about SJS. Pharmaceutical companies don’t want to hear what she has to say, and doctors are hardly educated at all in school about the disease (“You’ll never encounter it” they’re told). As it is, 1 in 100,000 people in the US will get SJS, and there is a 50% survival rate. Perhaps if doctors had more than a one day seminar on SJS (no joke here, Jean told us this after asking around), the survival rate would go up? Just my own musing, of course.
As dad and Julie kept talking, they found a lot of similarities between themselves. For instance, they both have one eye worse than the other; both had skin damage (obviously); both lost their finger nails, Julie’s grew back, but dad only has his nail beds (see picture); they both have a strong aversion to bitter tasting things; both got asthma from SJS; both had ear damage in one ear (apparently SJS attacks one side of your body more than the other); because of their eye problems both have problems with bright lights, dad’s problem though has become milder over the years (and thus, Julie wears sun glasses a lot
). One thing they noticed that was different about their conditions was that Julie has dry eyes (she is medicated with fake tears, in laymen’s terms), and dad’s eyes just never stop watering because “the drains are closed”. Unfortunately, an ignorant doctor “sacrificed” Julie’s tear ducts very early on without telling her mom, so years later when they tried to open up her tear ducts, her new doctor discovered they were sewn shut beyond help. Julie’s mom was not a happy lady when she heard about that. Well, after many goodbyes, and pictures, we left Julie and Jean’s house. (By the way, sorry the pictures are kind of washed out. I couldn’t use flash or else dad and Julie’s eyes would have hurt, so I did what I could in Adobe Photoshop.) On our way to Omaha, Nebraska!
I actually had a list of places I found on the internet to go see in Nebraska. Kudos to Nebraska, they had a website dedicated to the cool places to stop on I80 that was easy to read. Unfortunately, we weren’t on I80 the entire time, so we missed a few exits as we were getting to I80 from Julie’s house. We missed the fudge shop!!! Oh well. The two places we did stop at on I80 were a bust. The first was Buffalo Bill’s ranch (see pictures of me outside the car). Notice how there’s nothing there but the tumbleweed and me (at first I thought tumbleweed was cool, until it starts tumbling in front of the car on the interstate while I was going 80mph. Then it was just scary.) After that little stop, we figured we drove about 20 minutes out of our way, let’s stop at the Buffalo Bill museum. Dad describes it as a garage sale, and I tag on the description “from at least half a century ago”. I thought the old pianos were cool, and dad was most fascinated by the real authentic Iron Lung. When we arrived at the museum, it was empty but for an older woman at the cash register. We said we came to look around, and she said, “You’ve got five minutes. We close at five.” Oh. Yeah, we didn’t realize that we had already passed into another time zone. So we took a glance around. It wasn’t worth $6, in my opinion, so I’m glad the lady at the register didn’t charge us for looking around for five minutes.
After that adventure, the last thing on my list of things to do in Nebraska that we hadn’t already passed was a crane migration observatory. On the website, it said that 90% of the world’s crane population flies over to this place. Well, it was closed when we got there, and all we saw was weeds. Woohoo. At least it wasn’t a 20 mile diversion like Buffalo Bill’s (it was only 2 miles).
Getting back on I80E, a storm started gathering pretty quickly. I wasn’t really very happy about that because I volunteered to drive after the first hour or so, for the rest of the day. I was tired, hot and sticky, and there was a bug stuck in my windshield wiper that made a mess of my side of the windshield whenever I tried to brush off the rain drops. Cool lightning though. According to the TV, there’s supposed to be a flash flood somewhere, but I don’t know what county we’re in, so I don’t know if it’s by us… I’m just glad we’re in a nice hotel on the second floor.
-
recommend
- recs 0
-
share
-
email
- sent 0
Post a Comment