Friday, November 18, 2011


I haven't been thinking too much about my Lupus lately because it really hasn't been an issue, which is a HUGE relief. I must admit this week didn't start off too good and it was a sign that the Benlysta is actually working.

I started to flare on Monday night. Stress and the fact that I was due for another infusion probably started the whole thing. I was so sick. Facial rash, chest pain, mouth sores, exhaustion and pain EVERYWHERE. So I fought my way through the four days to this morning. But I have to say I was reminded of how I feel when I am not on Benlysta.

Every joint feels like it was hit with a baseball bat, every movement has to be carefully planned. Every free moment should be spent resting. I am so incredibly thankful that this medication is working, and working well. I would be happy to take a few days every month of feeling like this if it meant the other days were so much better. The other days are filled with activities, family & friends. It is so great to feel so good.

So today was my 4th infusion. I enjoy getting them. I am excited to get them. And then 1/2 way through I am reminded of why I do these on a Friday. Nausea and exhaustion quickly set in. I am not complaining by any means. I will be rejoicing for as long as it works. I am so greatful for a drug that finally makes a difference in my life.

But now I struggle with habbits. After years of having to come home after work and lay down I come home from work and I have no idea what to do, so I go lay down. I need to learn to cook and clean spend more time with my family. I still need to listen to my body, but I need to learn it's ok to push myself and do what a "normal" person does on a daily basis. This will take time, but honestly, I don't even know where to start.

I hope you all have a safe, rest filled Thanksgiving next week. I will be enjoying time with friends as we play cards until the wee hours of the morning!


AnitaM said...

I just found your site- looking for a link between lupus and utter exhaustion. I was reading and was surprised (I don't know why) to find out there are other like me, but you are seeming to get help, while I am still floundering with prednisone and pain. A statement you made in an older post about the blankets being too heavy, OMG, yes. The last couple of nights I felt like screaming with agony, my hips, and legs down to my toe bones, all I want is relief. How can you explain that kind of pain? and the exhaustion? It's like I live to work and come home and go to bed and get up and drag myself to work, by wednesday I'm done, but I have 2 days left to go. Its unbelievable. I'm glad you are getting help, I think I need to complain more.

Anonymous said...

Great article. Here is some more information about lupus:

How Do You Get Lupus?

I really enjoy seeing and hearing about other people with lupus and how they overcome their problems with the disease. Great article on lupus!