Wednesday, September 22, 2010

Update


The kiddos with Nannie and GrandDad enjoying the summer in Wolfeboro

I can't believe how long it has been since I have updated. To all those who follow the blog, I apologize! With the introduction of facebook to my life, I have been sending out blips of information there, but nothing comprehensive like I write here. I have missed writing here so much! Just sitting down today to write was a thrill to me!

I read in another blog about MG that people only write about their myasthenia when things aren't going well, so all she could find out there about living with MG was negative. I think that is true to a certain extent- yet there are times when I don't write only because I am overwhelmed by treatments and full-time Mommyhood! So I suppose I don't write when things are very bad and when things are very good. Another example of Claire and her extremes! I either do things 400% or don't do them at all :-) Perhaps we should all pray that I find some way of being more moderate!

I know that reading about the details of my treatment is not of interest to some of you, but my fellow myasthenic readers (and perhaps a few others) would probably like to hear the results of the Rituxan that we decided to go forward with. Beginning in April, I had weekly infusions of Rituxan, combined with IVIg and solumedrol. I had a great month in May and then some trouble again in June, so we hit me with more Rituxan and steroids. July was a tough month for me- the humidity kills me- and I needed weekly steroid infusions. I had another dose of Rituxan in August. Since that time, I have only needed solumedrol twice. I am taking Mestinon every 5 hours, and definitely notice if I miss a dose! Regardless, the Rituxan has certainly improved things greatly, and I am thrilled with the results. I am certain that having the kids back in school has also helped with alleviating some of the symptoms. Just not having to be "on" all the time is a great help.

All that being said, from here on out, I would like to update the blog much more often. Thank you all for continuing to think of and pray for me and for my family. I appreciate all the comments and feedback, particularly from my last post "And so we lie".