browser life

To quickly recap: I've lived in Sioux Falls, South Dakota for a year and a half. There are only two rheumy offices here, and I've been to docs in both offices, hoping to find one who would treat my Sjogren's which was diagnosed in 2003 in Denver. So far, all three that I saw in Sioux Falls not only disagreed with the diagnosis, they flat out told me that they wouldn't support my disability case.

So I went to the Mayo Clinic in December and January. They confirmed sero-negative Sjogren's. The rheumatologist gave me the name of a doctor here for follow-up care.

Unfortunately, the rheumy I was referred to went on maternity leave. I made an appointment anyway, and have been waiting six months to see her. The appointment was supposed to be for July 11.

This morning, I was awakened by a call from the new rheumy's office. They informed me that since I had seen someone else in that same office a year and a half ago, I could not switch doctors. If I wanted treatment, I had to go to the rheumy who in 2007 said I couldn't have Sjogren's with normal bloodwork, who said that I "only" had fibromyalgia which is never disabling, and who told me that exercise would cure me!

I explained that I was requesting a new doctor because the old one disagreed with my diagnosis and I did not feel comfortable seeing her if there was a possibility she would discontinue my treatment. I added that I had gotten a referral for the new doc from the Mayo Clinic. I asked if there was anything at all that could be done.

The reply was that they would have to get the new doc to approve transfer of care after she returned from maternity leave, but that it would take a month, and I would have to cancel the July 11 appointment. Then IF new doc agreed to take me as a patient, they would make a new appointment, but she is currently booking into November! They then tried to pressure me into seeing the doc I had last year because she is not so overbooked.

I would just tell them to forget it and go somewhere else, but there is nowhere else to go. The only other rheumy office in Sioux Falls won't take me as a patient. I'd prefer not to go all the way back to the Mayo Clinic for a simple follow up appointment as it's a four-hour drive each way and not covered by my insurance (and I won't be done paying for my previous visits for another year).

So I told the woman who called to go ahead with the transfer of care request. I'm not happy about not being able to get in until at least November as that would be almost a year since I was put on Imuran, and no one is monitoring me. I am due for a continuing disability review from Social Security, and if they see I haven't been to a rheumatologist in that long, they may falsely conclude that I am no longer that sick and terminate my benefits.

I never ever had this kind of trouble when I lived in Denver. Both of my rheumys there took me seriously and respected the professional opinions of my other docs. It was actually the Denver docs who told me I must stop working because I was making myself worse.

I've been sick for 11 years. All I am asking for is a qualified local specialist to continue my current treatment with medical exams and simple bloodwork a few times a year. Why do these rheumatology offices turn that into such an ordeal?

I am angry and exhausted by all this garbage. I would warn anyone with a rheumatological disease, whatever you do, DON'T move to Sioux Falls, South Dakota! The docs apparently are stuck in the year 1985.

I would continue, but I can't think anymore.