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.

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.

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.

She writes:

I have lupus and I have a very well intentioned husband who thinks that holistic medicine will cure me. Everyone tells me to that multivitamins, exercise, smoothies, will be the way! If that were the case…why hasn’t the medical doctors said anything??? My husband is very agitated that my primary doctor hasn’t recommended “natural” cures…maybe because there aren’t any!!!!!!

I have very strong opinions on this matter, which I can sum up in one sentence. Most forms of alternative medical treatments are a load of crap and are specifically designed to cure you of having any excess cash in your bank account.

Please note that some activities like yoga often fall under the umbrella of holistic medicine, and I think relaxing your body and stretching is a good thing and will probably make you feel better in the long run; however, if your yoga instructor says that yoga will cure your lupus, then that person is making a claim that is not supported by evidence.

That being said, I believe that the phenomenon referred to as the placebo effect may very well be something that is not just a psychological reaction but also a physiological process. If you believe that a treatment is helping you, your body reacts by producing chemical substances like endorphins and adrenaline that do actually make you feel better.

I share LupusKatie’s frustration. My wife has many well meaning friends that are positive that their multi-level marketing juice product or herbal treatment will cure her lupus. You may be thinking, well, what’s the harm? In my opinion, any belief or endeavor based on false assumptions that may prevent a patient from receiving actual medical treatment is harmful. If you stop taking your Plaquenil because your chiropractor says he can align your Chakra, well good luck with that. Now if you continue to follow the treatments prescribed by your rheumatologist and it makes your muscles feel better to get a massage, then that’s a wonderful thing.

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?

My wife recently had a neurologist suggest that go buy some colon cleanser product! What century is this? I really could care less if people choose to spend their hard earned cash on alternative treatments, but it doesn’t take a brain surgeon to figure out that herbal colon cleansers are quackery. If you’ve never visited Quackwatch.org, it’s worth a visit. Your wallet will thank you.

If I sound a little testy, it’s because I am. It’s been a very difficult few days. Neuropathy has been added to my list of things that really suck.