Posted by: hockeygrl1 | March 8, 2011

I’m a moon faced spoonie

So it’s about 2 months into taking prednisone (again) and I think I’ve gained 20 pounds 😦   Yep, that’s the life of someone with lupus…. you just start to lose the weight and then you feel worse and have to take the drugs again and you gain it all back and then some. I do have to say that my joints have been feeling great while I’m taking the steroids. No pain there, but I still have chest pain. I thought the pleurisy would go away quickly, but I guess I was wrong.

That seems to be the trend with this disease; me thinking things will correct themselves quickly and it not happening. I thought I’d get out of the hospital and return to work within weeks, it’s been 3 years now. I thought I’d be taking less medications and all that happens is the medications change and so do the side effects. I guess I have to stop thinking.

I did just order 2 books on lupus to educate myself some more. I don’t know if there will be any new information in them, but you never know. There are some text books on lupus I’d like to read, but they are very expensive (between $100-200) and I wonder if I’d understand everything. They might be written in medication terminology. OOOO, Maybe my doctor has them and will lend them to me. That would be great.

Speaking of my doctor, I get to see her this week, Thursday. I get to take the hour drive to HCMC to see my rheumatologist and see what she has to say about my lupus. I know there will be a new medication involved. The big question I have is if it will be Rituximab or Benlysta. Benlysta may be approved soon (first drug since the 1950’s to treat lupus) and it may be less expensive. My doctor is very up to date on new treatments and is even running some trials herself at HCMC so I know she will pick what is best for me.

I want to write an article with her about this myth that I could go into remission and what that would feel like to me. Will this fatigue go away? How long will remission last? Will I still need to take all these pills? If I do go back to normal activities, will it cause a flare? There really isn’t an answer to these questions online. It says that we can go into remission and it is rare that it lasts 5 years and most are for about a year, but it never says if a lupus patient will feel better. I know my ‘numbers’ for all the blood tests are getting better, but I haven’t felt better.

I so want to go back to the days of endless energy! I want to wake up early and go for a run then go to work for 8+ hours and come home and cook for the kids and run them all over the county. I miss that. Really, I miss running/walking. I’d put my iPod on and work out for a half hour either on the treadmill or the road. I’d get lost in the music and my rhythmic breathing. It was a time for me, with no thinking; just my body doing the work.  I want to do this again someday and run for my lupus and spoonie friends.

As for my family, Cassie sprained her ankle at dance on Saturday. It’s all purple. I don’t understand how someone so graceful can be such a klutz. I’m making her sit out at dance all week to let it rest. She really needs to get practicing her solo since her first competition is April 9. She also needs to work with her dance group, Comets, on their 3 group dances. The more practice the better they all are!

Cupcake baking will continue tomorrow. Cassie and I are baking a recipe from and this time using cake flour instead of all-purpose flour to see if the cupcakes will be lighter. The Martha Stewart recipe turned out heavy and dry so this recipe also calls for vanilla yogurt and I hope that makes them more moist.

I better get my relaxing in; the dogs are out skiing with mom so it’s nice and quiet!


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