Off to UCLA again

We’re heading down to UCLA again to see Jenny’s rheumatologist. It’s always a tough trip. (It’s four hours down and four hours back up for an hour appointment.) We hope that since Jenny had all those tests done, they will tell us something we didn’t know already.

I hope that all of the tests and MRIs actually got sent up to UCLA like we requested. It’s never been done on time. It always ends up that we make the requests weeks in advance and nothing ever gets sent to the rheumatologist, who is the only one of Jenny’s doctors that I trust.

Things Unsaid

We just recently returned from a little vacation in Lake Tahoe. It’s always wonderful to get away for a while, but traveling can be so difficult.

Between the altitude, the bad air quality, and the amount of sun, my wife had a really hard time on the trip. I don’t think I dealt with it very well, either. I try and stay positive, but I don’t think I did a very good job on this trip. It’s so frustrating to see someone you love be miserable.

We were at the lake, and I was out in the very very cold water while the kids were playing on the beach, and Jenny had to stay covered up in the quickly fading shade. I knew she would much rather be out in the lake, and it just made me sad to see her all alone with her big hat, reading a book. She shouldn’t really have been out there at all, but she knew how much it meant to the kids to go to the beach. I just don’t know what to say in times like that, and so I don’t say anything.

Honey, I’m so sorry that you have a really stupid disease.

I can’t tell you how many times I’ve said that to her. I don’t know what else to say.

Have Lupus – Will Travel

My wife and I are making our regular four-hour excursion to the UCLA Medical Center to see her rheumatologist. It will be the first time we’ve been there since the disaster months of November and December, 2007. I’m taking the day off of work so I can be there and talk to the doctor. I think she’s an excellent doctor, and I trust her, unlike the score of medical wackos my wife has seen in the last few months.

It’s a terrible drive, and the sun is always a problem. We try and put something over a window so my wife doesn’t get too much sun, but it’s no fun for her. We try and cover her up, but then she gets hot and we have to blast the air conditioning, which quickly turns me into a snowman.

On the other hand, it is nice to get some quiet time together, even if it’s for a crummy reason.

I was wondering if anyone else has to, or chooses to, travel like this to see a lupus specialist that they consider worth the inconvenience?