October Update

I really wish I would use this blog for an outlet more often, but I haven't.  Maybe some day I will remember that I can post this stuff and free it from my brain.  So here is the update...
I had my infusion in July with no signs of improvement.  I went through summer fighting my lupus, watching everything that I did and taking every step with caution.

I met with my doctor in August and she said that because it took 3-4 infusions for it to start working I should wait until I have been back on it for the full four infusions... this was an overwhelming thought since I was a week away from number 2.  She did show me my chart and the amazing progress I had made while on benlysta and to just hang in there.  So I did. 

September is usually a pretty stressful month for me, I have WAY too much going on in my life, and this year with the Benlysta not yet working in hit me hard.  I struggled all month with painful days after painful days.  Getting home to medicate myself couldn't come fast enough.  I remember a recent Sunday when I was at church and I had three friends tell me I looked amazing and I must be feeling good, what I didn't share with them was no, this was an act and apparently I was acting too good so I needed to tone it down so no one would ask if I was really doing ok. 

September may have been the worst Lupus symptoms I have had in a LONG time.  But on last week I got the fourth infusion... I wasn't too optimistic that it would start working but as of yesterday I can say without a doubt that it has kicked in.  I NEVER want to end the infusions, I NEVER want to go back to feeling the way I did.  I am so thankful that it is actually working. 

Don't get me wrong, I am going to take it easy the next few weeks just to make sure.  

On another note... I decided at the begining of September to go gluten free for two reasons.  One, a few years ago my Rhuemy asked me to just to see if it would work.  I didn't have the motivation then or the willingness to try new things and two, I can't loose weight for anything.  The first week I had a bad headache but for the most part it's been pretty easy.  It's been 6 weeks and I am told it can take 6-8 weeks to see a difference,  I know it will be hard to tell since benlysta was started back up but I will just wait and see. 

I will keep you posted!