Thursday, October 11, 2012

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!

1 comment:

Shawna said...

Hi Cori,
I'm not sure how I found your blog over the summer, but I'm here again wondering how you are.
I know exactly how you feel about dragging yourself to church and then everyone smiling and saying how great you look. I completely understand the inward cringe when you are's nice to be hugged, but being touched hurts. Keep blogging. It helps others of us know we aren't alone!
Did going gluten free help?
The naturopath in my rheumy's office suggested I eliminate all grains. That helped the pain (but further sapped my energy) but the real culprit seems to be legumes. If I have a meal with refried beans, green beans, or peanut butter, I will have shooting pains through my joints within the hour. Worth it once or twice a month, but sometimes the pain starts before I even leave the table. I'm thinking of trying to add wheat back and see how I feel.
Love to hear how you are doing now, what is helping, what isn't.