Emotions of Lupus

A Change in Approach

Dear Diary,

It’s time for a change in approach. I have been so patiently waiting for several weeks now to get two referrals from two of my doctors. One referral was the outcome of my appointment with my hematologist regarding the positive tests for Lyme disease and two related co-infections. I was there to find out what she thought about the long-term antibiotic treatment for the Lyme disease (that the California doctor was prescribing) and what impact it might have on my Coumadin therapy. She thought it would be best to seek out the opinion of an infectious disease doctor. She said she would have her staff process the referral to him right away. That was on March 24th.

The other referral was for a brain MRI, part of a workup by my new neurologist, who was looking into why I’m getting these awful headaches accompanied by what she thinks is an Essential Tremor. She wants to make sure the Lupus wasn’t affecting my brain in any way. That was on March 30th.

In the weeks since those two appointments, my neurologist’s medical assistant and I played telephone tag as she worked to process the referral to my requested hospital’s radiology department. I’m not sure why this was taking so long. But, I worked to have patience and not pester her too much. At least, she was being cooperative and trying to help—albeit a bit too slow.

My hematologist’s office staff, on the other hand, was not being cooperative. I’ve only received one return phone call about the referral, during which the assistant told me that the referral was faxed over to the infectious disease doctor. End of story as far as they’re concerned. But, when I called the infectious disease doctor’s office, they said they had no record of it, and in fact, the told me that a fax referral would not do. To get to see their doctor, the referral has to be a telephone referral from my doctor to theirs. Despite several messages left at my hematologist’s office to explain the requirement, I have not heard any response from them. Grrrr….

So, by yesterday, it had been more than three weeks of getting nowhere with the referral to the infectious disease doctor and four weeks of still not hearing from the MRI scheduler. By this time, I began to get angry. I mean, with every message left and no return phone call, I could just feel the adrenalin surging through me and giving me an even worse headache or stomach pain. It’s amazing how directly the body responds to negativity like this, especially when you have Lupus.

Realizing that my anger was not serving me at all and certainly not getting me the referrals I needed, I decided to take a step back. Just walk away (figuratively) and look at the big picture. There has to be a way around all this.

So, yesterday, I decided to call the receptionist, rather than the medical assistant, at my neurologist’s office. She put me on hold, checked my file, and discovered that my referral had been sent to the wrong hospital. So, after she asked where I’d prefer to have it sent, she faxed it over to the correct place. Within 10 minutes, the correct hospital called and scheduled me for my brain MRI. Why it couldn’t have been that easy in the first place is beyond me.

To address the problem with the referral to the infectious disease doctor, I decided to forego working with my hematologist’s office altogether. Instead, I contacted my internist, who I consider the hub of my wheel of treatment specialists. I told her receptionist what I needed late yesterday afternoon. By this afternoon, within 24 hours, I received an e-mail from my internist directly, promising to take care of it for me. I fully expect to have an appointment scheduled with an infectious disease doctor within the week.


Stepping back and looking at how I handled this trying situation, I think I did pretty well. I was patient, giving time to the probably overworked staffs of these doctors offices. Although I didn’t enjoy getting angry, I decided to channel that anger to find a work-around solution. A change in approach after three weeks netted good results in 24 hours.

Just another day in the life….








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