Cold Shoulder from Doctor

Modern health care can be frustrating for even healthy people. Imagine how amazingly frustrating it must be for those people with a chronic illness like lupus.

My wife has recently had to drop one of her local doctors. He was a pain specialist. I know this because his office specialized in being a pain in the ass. Maybe he is actually a pain in the ass specialist. I suppose I should check those hanging diplomas next time.

This guy’s office must at some point have decided to ditch any patient that had a condition beyond what they felt that they could handle, conditions like, oh I don’t know, lupus, for example. They could have said, “Look, we don’t want to treat you anymore because we feel that the amount of medications you require, coupled with the intricacies of your illness, may result in us getting sued somehow because we don’t really understand your illness or how to best treat it and we don’t really want to bother working with your lupus specialist because, you know, that would require emails and phone calls and stuff. The doctor would really just rather throw some pills at people and then go golfing because, you know, he’s worked really hard for many years and he would like to take it easy before he retires in a couple of years.” They could have said that, but didn’t. Instead they decided to make more and more outlandish demands on scheduling and testing until my wife would decide on her own to go somewhere else. “We have to reschedule your appointment. Oh, that’s not a good time. Well, that’s all we can do. If you can’t make it at that time then we can’t refill your prescription.” Crap like that was happening more and more often. They wanted to charge us for drug tests that were not covered under our insurance. They became more and more anal sphincter-like as my wife did her best to jump through all the hoops they were setting up for her to jump through.

Finally, my wife had enough and told them to go to hell. I don’t blame her at all.

Now she’s going through a difficult readjustment as she changes to medications that we can get through our primary care physician and her lupus specialist. I think it will work out for the best in the long run, but it’s really annoying when people don’t do the job they are supposed to do.

Skin Reactions

Recently, my wife has developed dry skin on her hands along with small round lesions that are extremely painful. It seems to be related to sun exposure and stress, but really we have no clue what’s causing it. This is probably the third time in the last year that this has happened but this is certainly the most severe occurrence.

It’s very frustrating when your specialist is two hundred miles away and doesn’t always respond to phone calls.

It looks like a chemical burn, but she hasn’t handled any chemicals.

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.

Is No News Always Good News?

My wife and I recently went back to the UCLA Medical Center for some additional tests that were recommended by my wife’s rheumatologist and a pulmonary specialist. It was another day of work missed for me, and another day that my wife had to travel.

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.