Blogging is back...

Hi Friends!

I haven't blogged since Christmas...wow! It's been a challenging year since then with several hospital stays and lots of in-home health care. People have been asking about my recent hospital stay -- so here's the basic info.

I'm home after being hospitalized for yet another round of steroids and chemo. I just did a round of IV steroids 2 weeks ago at home. It wasn't enough. It helped a bit and I was able to walk again and resumed having feeling in my legs -- BUT 2 weeks later and my lupus headache was back and my bloodwork was all off. So, into the hospital for all the tweaking.

It was disappointing because we were all hopeful that I would get to do Benylstra -- the new lupus infusion just approved by the FDA. Turns out I am currently not a candidate as no testing was done on people with lupus affecting their brains. (It's considered unethical to do testing on people in my situation.) So, instead I'm on my 5th round of Rituxan. The problem is I'm only allowed to do 8 rounds before it's considered too dangerous for me. I am trying to not think about what's next -- they may let me do more Rituxan, they may let me try Benylstra, or there's been talk of a stem cell transplant?? For now I just have to think about today. And know that this round of chemo while it pushes the lupus back -- will likely only last 3 months again.

I'm trying to have a good attitude, but after 3 years of fighting for that elusive remission -- I am tired. Bill is at the grocery store. The kids are hopefully doing their Saturday chores. And I'm in bed, sipping soda. My goal for today is a bath and clean jammies. I think I'd feel better after that. I'm also hoping to be able to get back to daily Bible reading.

Much Love,
Michele