Moving right along #lupus

I went to see a Lupus expert in my area. I’m thinking he’s my new doctor.

He’s equally as far away as my current rheumatologist, so I’m not saving any time in the car. But if the doctor is good, the drive is always worth it. His office has valet parking, which I hate. You never know if the guy that parks your car has a cold or scratched his ass and didn’t wash or what. His office is equally as small as my other doctor’s office, except he has a separate office next door that serves as an infusion center. It would be nice to get infusions at a center instead of a tiny office. I was told that he is very “scientific” and given the impression that he wasn’t a “people-person” so to speak. But when I met him, the exact opposite was true. I felt comfortable talking to him immediately, which I can’t say about my current doctor. I find my current doctor to be very dismissive sometimes and it makes me hold back. Some appointments with her are better than others.

I of course had to summarize my entire health history, which gets more complicated as time goes. It can be easy to forget things or forget what order they happened. I don’t like having to recount everything like that, but every doctor has you do it for your first appointment.

After that I changed into a gown so he could examine me, which was interesting, because most doctors don’t really examine me for some reason. It’s nice that he’s thorough. He wrote me a prescription for a calcium-channel blocker to help with the Raynaud’s. We talked about the fact that I was there for a second opinion, and that Rituxan has been considered. I talked about my headaches and how vasculitis was suspected, and that I was having a hard time getting approved for a spect scan. He told me that he could draw some blood and send it to Cedars instead of the lab my other doctor uses for more accurate and specific testing. He might be able to tell just with blood if I have inflammation in my brain, and some other lupus markers. He said that vasculitis and brain inflammation should be diagnosed with a spinal tap, but that we’d see what the blood says and go from there. He seemed a little irritated that other doctors haven’t gone this root yet, or done much of anything progressive. It seems he thought the idea of a spect scan was strange too.

He said he would contact me with the results in a week, and if not, I could email him. Yes, HE would contact ME. That’s new. A doctor I don’t have to babysit, and that uses email.

My headaches are still really bad every day. I’ve been in a flare lately, too. I’m crossing my fingers that I start a new treatment soon.

So, hopefully, things are finally moving forward. I feel like I’ve been at a stand-still in my treatment for the past 6 months.



April’s blog salad

My last Benlysta treatment was March 3rd. It’s only been a short time since the one-month mark, so I’m not entirely certain how being without it has effected me yet. I can honestly say my pain is the same as it’s always been, since the Benlysta never really seemed to help it much anyway. It seems like I am having more skin sensitivity. I’m having some new symptoms, and it’s difficult to tell if it’s related to being off the benlysta or something else. I’ve had a sore and swollen lymph node under my left arm. It’s bad enough to make my boob hurt, too. I am also having pain in my rib cage. I can’t wear a regular bra without having soreness in my sternum. It feels like someone punched me. I’m sure that’s some kind of cartilage inflammation. But the lymph node thing worries me. I’ve had the chills, and episodes of being hot and sweaty. I’ve also had mysterious itching that comes and goes all over my body that isn’t an allergy. It keeps me up at night. I hope it’s just the lupus and not something else to worry about. I’ve had the temperature and itching symptoms since before stopping the benlysta. They come and go. I’ve gotten sore lymph nodes before, it’s one of the ways I can tell I’m flaring. The nodes in my neck get sore when a flare is coming on. They seem to hurt when I’m having a really bad headache, too. But the armpit soreness is new.

I saw my rheumatologist a few weeks ago. I’m going to another rheumatologist to get a second opinion on Rituxan per her request. It’s a pretty serious step to be put on Rituxan, and I don’t mind talking to more than one doctor about it. I still haven’t had the spect scan on my brain (looking for vasculitis). My rheumatologist has to fight for it now. In the mean time my head still hurts every day. It hurts pretty badly right now. My appointment for the second opinion is on Wednesday, and he’s a Lupus expert, so I’m looking forward to hearing his perspective on everything, including the Addison’s. My neurologist believes my Addison’s is due to my lupus. I’ve wondered that, but figured I would never really know. Knowing won’t change anything but I still think it’s interesting.

I finished a painting last week. My back was fucked up the next day from working on it. I’ve been trying to work on other artsy things but as always, it’s been really hard with the amount of pain I’m in. The residual next-day pain is no fun either.

I have an appointment with my Primary doctor to talk about my lymph node issue, but it’s not for another week. I’m going to try to get in sooner. He’s a good doctor but not easy to get an appointment with him.

My head hurts pretty bad. I’m in the throes of a 3-day headache. I tried imitrex and it seemed to help right away, but I also felt like it put me in a cycle of headaches, too. I’m afraid to take it now. I don’t want to take a headache medicine that gives me headaches. WTF is the point?

So far my options for pain killers have dwindled to ibuprofen and Fioricet. Everything else has side effects that started to be equally as awful as the pain.

I guess everything with me is basically the same. Still feeling like shit, and the progression of my treatment is moving at a snail’s pace.