So what do I want to tell you about my life today? Well, things are pretty quiet now. I spend the days at home alone....
No, it's not as bad as all that! I'm just trying to keep things light! Actually, this alone time is ok. I am focusing on things that I haven't had time to do in a very long time and it's a good thing. I am starting to collect the books that I really want to read. Yesterday I finally received a book called How To Be Sick - A Buddhist-Inspired Guide for the Chronically Ill And Their Caregivers. It's a mouthful, huh? But it was recommended reading by the "Lupus Now - Lupus Foundation of America, Inc." I also have another book coming called Coping with Lupus. Knowledge is power, right?!
Otherwise, I putter around the house and put things in order - something I haven't had the time to do in years. This is something I do V - E - R - Y slowly. My fatigue limits much that I can do, so there are lots of rest periods in between. I do feel satisfied that I am able to do little things - small victories mean a lot to me.
I am able to cook and eat really healthy meals and Ron is benefiting from this as well. Our insides are much happier these days. Hopefully, when I am able to do a little more exercise, the outside will start to show it, too. I have dusted off the stationary bike and spend at least 5 minutes on it in the morning. Sometimes, another ride at the end of the day would be just too much. I am averaging 3 times down and back up the stairs everyday.
I have no joint pain, no chest pain, no pleurisy, no nausea. Remaining symptoms are FATIGUE, headache, dizziness, thrush, and some brain fog. I can only assume that the fog is coming from all the medication. I write EVERYTHING down so that I don't forget things.
So, all in all, things are ok. Don't worry about me. It's all a process. Ron and I and Dr. N are committed to see this through. I am ever optimistic and am waiting for Benlysta to turn this all around. After all, remember the part above where I say that I am not in pain!!!
Infusion #7 is on August 2nd...3 weeks from today!!!!
