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.






1 Comment

  1. Going through these experiences with you, seeing how amazing you handle it all, how sweet and loving you are, how you never take anything out on another person, when so many do….how helpful you try to be with others dealing with your challenges..it is mind boggling and fills my heart…..love you Jill.

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