Waiting for Benlysta

I haven’t really had much to say lately. However, I was curious about how many people are having the same kind of conversations about the new medication, Benlysta.

My wife’s lupus hasn’t been in remission since I’ve known her. I’m not sure that it’s ever been in remission, but we’ve been talking about what that would be like. How would it be? Would she be able to reduce the amount of pain medication she takes? If your lupus is in remission, does that mean that you will no longer be light sensitive?

Wellness is not something we’ve had to deal with in the last ten years. How would that change our daily routine? Would it change the tempo of our lives? Probably not. My wife does whatever she wants to do, regardless of her health. Would it change how we relate to each other? Probably not. I bring her coffee in the morning because I love her, not because she has a hard time getting up.

Maybe it would just be a matter of not having to worry so much all the time. That would be nice.

Of course, there’s no guarantee that Benlysta will be effective, or even approved by the FDA, so this thinking may be all pie in the sky, whatever that means. But it can’t hurt to be hopeful, right?

Lupus and Acid Reflux

My wife has struggled with Gastroesophageal reflux disease for years now. I imagine that this is fairly common with anyone who has to take the amount of medication that she does.

She’s tried all kinds of medications for reflux over the years. The last one that was prescribed for her was Zegrid, but that is no longer covered by insurance because it is available over the counter. I still don’t understand that logic. We pay a bit more for it now since it’s not covered, but it still seems to do a good job.

Things that seem to help in addition to the medication are:

  • Avoiding carbonated beverages
  • Reducing caffeine
  • Avoiding late night snacks

My wife has a terrible time following any of these tips. Thank goodness for medication.

Why all at once?

Why does everything seem to happen all at once?

Things just continue to pile up. We’ve had car trouble in the thousands of dollars, because of maintenance and accidents. Stuff is falling apart around the house. Jenny had a severe reaction to Arava which was very scary. My work is insane, and when I say insane, I mean crazy, like dressed up like Mayor McCheese shooting up a Burger King crazy. It’s all too much for me, I guess.

Knowing that it is never smart to ignore symptoms, I went to the doctor to see why I’ve been having chest pain. I went expecting to hear, “Oh, you are stressed out. You are fine.” That’s what I expected, but that’s not the answer I got. I got, “Oh, well, you may be having some issues. You need to go to a cardiologist.”

Seriously? Now? I don’t have time right now.

100th post

I just realized that this was going to be my 100th post on LupusFamily.

It’s getting close to Mother’s Day and I thought I would dedicate the 100th post of this blog to my wife and all the other mothers out there with lupus.

My wife does her best to be a good mom, and though she may not always feel successful, I think she’s wonderful.

This blog celebrates my Jenny and all the Jennys out there in the world that try and balance their life while dealing with chronic illness.

A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts. ~Washington Irving

Happy Mother’s Day Jennifer, a few days early.