Jill, professional thumb-twiddler. #lupus

I think the hardest thing about being sick is the waiting. I’m always waiting for something. And whatever it is usually takes an eternity.

The medical board reviewing my spect scan case denied it again, even though my neurologist went in there armed with plenty of evidence that it needs to be done. He was really surprised that it got denied. He even told me he has some evidence that my Adrenal insufficiency (Addison’s) is caused by my lupus. I got a letter in the mail stating that “Lupus is a disease of soft tissue and joints” as their reasoning for deeming it medically unnecessary. Actually, lupus can effect any part of the body, even the brain. There is a form of Lupus called Central Nervous System (CNS) Lupus in which the antibodies attack the brain and spine, and has been suspected in my case more than once. I don’t appreciate the fact that the doctor that reviewed my case and denied it is probably a doctor appointed by the insurance company, and they have absolutely no clue what they’re talking about.

My rheumatologist is going to have to fight with them about it now. I wonder how many months that will take…

In the mean time, I’m worried about everything, and I’m tired of being in pain.

I’ve been frustrated with my current rheumatologist because I sometimes feel like I’m not being heard, and I also feel like we’re not getting anywhere. I went to a different rheumatologist for a second opinion yesterday.

She was nice enough, and really young. She took a full health history, accidentally deleted it on her laptop, and did it all over again, and then the original reappeared for some reason. She insisted that vasculitis can only be diagnosed by spinal tap, and that spect scans are ‘experimental.’ I told her about my Addison’s Disease, and I got a feeling she didn’t know what I was talking about until I said “adrenal insufficiency” and mentioned how I can’t be on prednisone long-term because of it.

I talked to her about my experience with my current rheumatologist and getting the Benlysta infusions, and she asked me why I went to see a doctor so far away from my house (I get my infusions about an hour away), and I told her that the doctors in town were like ‘farmhouse doctors’ that don’t have much knowledge outside of your garden-variety illnesses. I’m exotic and they haven’t been able to help me, and the closer I get to a big city, the more educated and innovative the doctors are, especially at the universities. She was mildy offended by my ‘farmhouse’ comment for some reason. It wasn’t aimed at her. But I didn’t know how else to explain it. Doctors in a smaller city/town just don’t know how to deal with someone like me. I hear a lot of “I don’t know what to do with you”, or “what’s that?” or “we don’t do that type of treatment/test here”. They don’t do Benlysta infusions in my town. The one rheumatologist they have here refused to treat me with anything besides ibuprofen because there “wasn’t enough research”. I wasn’t going to sit around and wait until I was pissing blood to go to a real doctor, and I didn’t care if it was a far drive. I wanted the best treatment as soon as possible so I wouldn’t get organ damage.

Then she suddenly asked me “What about the abuse?” reading off some file on her computer. I was like “what abuse?” And she started talking about physical and sexual abuse. She wasn’t reading the correct file or something, because I’ve never been abused, and even if I was I don’t think I’d put it on a doctor form.

After that nonsense, she told me that she didn’t see anything she could treat me for right now. I had told her I was off the Benlysta, and she talked about Imuran, which I later learned isn’t a typical treatment for lupus. She doesn’t think I have vasculitis and she doesn’t think a spect scan is necessary, and the “maybe it’s your Addison’s/something else is going on” filled the air once again. She wants me to see another rheumatologist, someone who is an expert, and was already suggested to me by my current rheumatologist. I’m just too complicated. Which brings me back to my farmhouse doctor comment. Now I need to “see an expert”. See? Told ya so.

Between the deleting everything on her computer, and reading someone else’s file about abuse, and not being able to help me, it was a weird experience and I’m not going back. The frustrations with my current rheumatologist seem miniscule compared to the frustrations I felt getting a second opinion.

I’m sticking with what the neurologist says, and I’m going to continue to fight for the spect scan. He is a doctor who has a good head on his shoulders and knows so much more about things outside his specialty than any doctor I’ve ever seen. I’ll be sticking with my current rheumatologist. As far as treatment goes, I don’t know what direction that will be going in, it all depends on the spect scan.

I’m still in a lupus flare. I feel like the Tin Man. When Rocky Balboa said “My hair hurts”, he wasn’t kidding. I’m trying to stay positive and stay busy, and most days I do alright. I was pretty pissed yesterday though, as you can imagine.

I need a foggy day beach trip and some pizza, then I’ll be good. In the mean time, it’s The Wonder Years and crocheting a hat.

*high five*



  1. CJ, By the way, Inmuran (azathioprine) actually is a common treatment for moderate to severe organ-threatening lupus, borrowed from kidney transplant therapies, and I took it for 10 years, along with methotrexate to control my CNS involvement – just what you mentioned in your post. Check with a different doctor and keep up the fight advocating for a better answer for your treatment. No one else has the vested interest in your health like you do, so don’t get weary!! LA

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