In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.

It was an okay visit, but I was amazed at this woman who sat in the waiting room coughing the whole time. I’m pretty sure she was asked to put on a mask at least once, but she never did. She sat underneath the Please do not use cell phones sign and talked loudly on her cell phone. I think she felt like, “Hey, I’m sick so I don’t give a damn about anything.” I don’t care how sick you are, people should still have some respect for people around them.

I think my wife’s rheumatologist is great, but I’m happy we don’t have to make that trip again for a few months.

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.

We got very little feedback about the tests. I understand that it takes some time to evaluate the tests and scans, but even while the tests were being done, we were given the impression from the technicians that there was nothing of interest.

I think both my wife and I had a feeling of disappointment. I realize that no news is usually good news, but it’s such an ordeal to find a babysitter, make the four hour drive down there, and then take another four hour drive back. It just seemed like such a waste of time.

We know that it could be a lot worse, and we are thankful to not have bad news, but sometimes we would just like to KNOW SOMETHING.

I scheduled another day off of work so I could drive her down there, and she made sure her schedule would work and that there would be someone to watch the kids.

Then two weeks before the date, the doctor assigned to doing the scan changes the appointment, which the rheumatologist says was extremely important, to a date in mid-August. Oh, yeah… that can wait four months. Important? Nah. Who cares? She’s not my patient.

This stuff pisses me off to no end.

We are fighting to keep the same date we had, and the rheumatologist is doing what she can for us, but it’s really frustrating.

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?