It's been over six weeks since I've posted here, and I see from the daily stats that many of you are still checking in regularly despite my inactivity. And I thank you for your continued interest, concern and sweet notes of encouragement.
However it's time to take a break from writing "Without a Manual". There have been some significant changes in my life over the last months and I just don't have it in me to share with the world at large right now. I've been told that occasionally past posts have been helpful to others seeking info about the treatment of Erdheim Chester Disease, and for that reason I'll keep the blog up for now.
For those of you interested in how my meds are working out - I couldn't be happier with my Kineret treatment. Pain is infrequent, and when it does occur is much milder than it had been before starting treatment in December. There's been talk at a recent hospital appointment about a new IL-1 inhibitor type drug that is administered less frequently (these once a day shots are becoming more difficult as scar tissue builds in the allowed injection areas). It's reassuring to know that my medical team continues to investigate other treatment options.
The gluten free diet I embarked on has also been a very positive development. When I slip up and accidentally eat a gluten product my body lets me know pretty quickly that I've goofed. So the modified diet stays!
I thank you with all my heart for the amazing support I've received from so many of you since starting this blog two years ago.If you'd like to get in touch directly I can be reached at sessa1@live.ca.
With my gratitude,
Sandy
Saturday, July 9, 2011
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