Well Benlysta dose #3 happened on Wed, Sept 25! I experienced much of the same joint/bone pain that I did after #2, but it only lasted the night of the infusion and then was pretty much gone the next day. This led to a tough night trying to sleep on Wed however I survived and the girls survived having a rather cranky mama on Thursday. Not that they weren't doing their fair share to make me tired/frustrated/enraged, but let's just say we know it's been a rough day when the moment Tony walks in from work I say 'bye' and escape on a 'fun' jaunt to the grocery store for some alone time.
Anyhow, the infusion went well except for not getting the meds from the pharmacy for 3 hours. Normally it'd be about 90 min to get the meds mixed but this particular time there was a stubborn chunk that wouldn't dissolve and since they can't shake it, they just had to wait and watch it. I was fine because they a) have cable, b) I brought a good book ['Shift' by Hugh Howey], and c) I was ALONE. Oh sweet relief!
Great news! I surpassed my goal on fundly https://fundly.com/leatrice-s-benlysta-infusion-fund with the Premier Jewelry party being a huge success thanks to all my amazing friends and family who supported me (and got some awesome jewelry out of the deal)! Now we're up to $2414, woot woot!
Wednesday, September 11, 2013
Everything went swimmingly with my second infusion! They did have to stick me 3 times to get the IV started, which didn't feel very good, but once it was placed everything was fine. If benlysta seems to help then I will seriously think about getting a port placed to avoid all these difficult IVs and blood draws. At first I thought a port was like the pic line I had when I was in the hospital, but it's nothing close to that...except for the fact that it serves the same general purpose. It would be like a little button they insert under my skin into a vein/artery (not sure which) and then when I need to have an IV or blood draw they just poke into the port under my skin and they're in. Seems easy enough and probably a lot less hassle in the long run. Anyhow a funny thing happened today! I posted a link to my fundly page on this Rita ranch and vail community board on Facebook a few weeks ago and one of the people who commented on it said she was an infusion nurse at one of the infusion centers in Tucson. Well today after the first nurse couldn't get the IV placed she called in another nurse and that one goes, 'hey I think I commented on your post on the Rita ranch and Vail board on facebook about Benlysta!'. I was like, 'no way, that's crazy!'. So then we got to talking and it turns out she used to be in a small group with the coordinator of my mops group and that we both went through the foster care class at Arizona baptist children's services (not at the same time) and that her case worker was my Mops mentor mom Julie's daughter. That's so crazy right? What a small world! Anyhow it was great getting to chat with her and I'm hoping to see her in the infusion center again sometime. My mom watched the girls today while I had my treatment, first time babysitting since her accident and it seems that all went well. Even though I asked her not to clean the house, of course she couldn't resist! I really do appreciate the help, but I don't want her to over exert herself. Her physical therapy really seems to be helping her gain back range of motion and strength in her arm which I'm so happy to see. I know it's hard for a parent to see their child in pain but it's also hard for a child to watch their parent suffer. So I'm glad she's recovering well! Anyhow, my appointment today went from 8:30-12 so that's an improvement over last time. Yay! I felt pretty good afterward, a little tired and my mom let me take a nap after I returned some phone calls. I actually was wanting to go to the gym tonight but then opted for taking a bath and reading instead. I think I probably would have been ok working out but I don't want to take the risk this early in my treatments. I'll go to Zumba tomorrow morning and resume my workout routine then.
Tuesday, September 10, 2013
My second dose of Benlysta is tomorrow morning at 8:30! Which really means I should already be in bed, but I wanted to get one blog entry in before tomorrow. I'm not nearly as nervous as I was for my first infusion, so I'm already ahead of the game. For the first few days after the last infusion I was feeling better than normal, not a lot better, but a little better is good. Then I had some different symptoms for a few days, which could have been from the Benlysta, or not, who really knows? I had a lot of leg pain one day although I did ride 12 miles on the stationary bike at the gym that day. Then I also have had quite a few headaches the past week, but only one bad one, the rest are just annoying. I slept really well at night for a few nights after the dose, but that's lessened and I'm back to tossing and turning and my shoulder is hurting again. I guess we'll see how it goes after tomorrow's dose. A lot of people on the Benlysta forum have said that their 6 month mark is really a milestone in improving their quality of life. I'm hoping it doesn't take that long, but I'm in this for the long haul! Keep praying that this will help me. :)