Window Witches

I love my rheumatologist. Not only did he save my life, he is a really good and kind person. Unfortunately, at least from my perspective, his staff hiring skills sometimes leave something to be desired. Enter the Window Witch, or as my friend Doc Rob calls them Helen Wait (as in "go to hell and wait").

I forget when, but it was early spring or late winter when I had an appointment with my rheumatologist. In typical lupus fog mode, I got my appointment confused with King Julian Grayson aka CAT's appointment with the vet. We both missed our appointments. The vet was willing to see King Julian the next day. You see, both of us have urinary tract issues. I have lupus nephritis and he makes crystals in his urine unless he is on prescription food. I called my rheumatologist and Helen Wait said, "Sorry, no appointments for 6 weeks." I explained what happened, that I have lupus nephritis and that the doctor would not be happy if it took that long. The response was, "We have no appointments for six weeks." I asked if she could ask him to fit me in. All it takes these days is 5 minutes. "We have no appointments for six weeks." No empathy. No cooperation.

So I decided to have the labs drawn and then call my doc on his cell after I had that done. Then life got crazy busy which was great. Fiinally, I found the scrip for the labs. By now it was August. I called Helen Wait the Window Witch again. "No appointments for six weeks." Grrrrr. I thought, "He really needs to know about how his staff do not take into account the needs of patients or his requirements of his patients. I left a message on his cell the first week in September, but he did not call back. I understand that. He has two little babies and it's easy to miss something. We had a huge lupus seminar on September 10, so once again I was preoccupied.

By now, I really needed another set of labs drawn. On September 29, I called again. "No appointments for six weeks!" So I made the appointment. It is tomorrow. I asked her to send me a prescription. Her answer, "Have your pharmacy call the office." WHAT? I said calmly, "Walgreens does not draw blood or test urine." She said, "Did you call them?" HUH? I spoke very slowly," I...need...to...have... blood... drawn...and...my...urine...tested. I...need...you...to...send...me... a prescription." She got it.

A few days later the prescription came in the mail. I didn't open the envelope until I was on the way to have labs done. I looked at the scrip, clearly written by a young woman (thanks be to God, I don't have that funky young woman writing but anyway) and it was wrong! Obviously, she copied it off a prescription about 3 years ago. It called for a CBC but not a differential. With lupus, the size and shape of the blood cells are as important as the complete blood count (CBC). The prescription called for a 24 hour urine collection which we have not done for years. On top of that, even if I did a 24 hour collection, it should have called for creatine clearance and it did not. I called and asked for the correct prescription to be faxed. I clearly explained why this prescription for labs was pretty useless. She said the fax went.

Fast forward 6 hours. The lab never got the fax! I asked the clerk at the lab to call the doctor's office. By now, I would not have been even remotely polite. She called. The first person said she never heard of me and that they did not send a fax! I instructed the clerk to ask for Cathy, who confirmed that she sent a fax. The clerk asked her to fax again.

So now, I see the rheumy tomorrow at 4. He will be upset that it took so long for me to get in. He will say that if I called his cell he would have seen me. And he would because he cares. But what about all the patients who do not have his cell? I have decided that this is a teachable moment. I am also not looking forward to it. However, we all get chances to change the world in small ways.

Sometimes There Are No Answers

"The doctor's not answering my questions," is one of the most common complaints that I hear from lupus patients and their families. In fact, I had the same complaint when I was first diagnosed. After 14 days in the hospital, I finally had a diagnosis for what had been bothering me for 38 years-systemic lupus erythematosus. A month later, I visited my rheumatologist for a follow up appointment. I had three pressing questions:

1. Is this progressive?
2. Will I become disabled and lose my independence?
3. Will it kill me?

He could not honestly answer those questions. Why? Not because he was trying to keep information from me, but because there is no clear answer. I was diagnosed in 2003. Since then I have done a lot of reading and learning.

Is lupus progressive? It can be. But it can also go into remission. A medication that prevents or slows organ damage in one patient may not work on another. Lifestyle and attitude have a lot to do with how lupus behaves as well.

Will I become disabled and lost my independence? No one knows. Most cases are mild to moderate, but it can be disabling.

Will it kill me? Maybe...maybe not. Lupus patients do have higher risks for heart attacks and strokes. Organ damage can lead to death. But, with good medical management and a proactive approach most lupus patients live a normal life span.

So, my doctor was not keeping anything from me. Sometimes there are no answers!