Life in Summer


My summer has indeed been eventful. We sold our travel tailer and that took several weeks. Next, my mother in law came for a visit…and I loved having her! Add to that, we rented a truck and got our stuff all out of storage. Of course, the day we did it had to be the hottest day of the year. Now, next, I drove my mother in law back to Kentucky. The next day I drove back home. We have had our grands off and on during all this time as well. Now I am sitting in my air conditioned house surrounded by boxes of stuff I have not seen for almost five years! It is like opening presents and rediscovering our possessions all over again!

As I write this, I am flaring up again. Go figure! I am running a low grade temperature, aching all over, flushed on my face but not full rash yet, and basically feel like crap. I am thinking all of this has finally caught up with me. You think?

I also tried to find out about getting the benlysta infusions from my rheumy. They told me to call my insurance and guess what? Not covered! At all! My doc can try to get an exception so we will see what they say. I mean, it is expensive (like 30k a year) and I cannot afford that!

I am still on the trial of benlysta but the dosage is not enough for me. I am on the lowest possible dosage being given subcutaneously every other week. I need to say that it seemed to work when I started out on it, but now my body seems to be used to it and not responding like at the beginning.

Finally, my granddaughter that is 13 told me that her knees hurt her a lot. Oh man, I am so hoping she does nto have this disease! Mine started out being “growing pains” and finally culminated into lupus. She is having serious pain and it hinders her at times. I am so worried about her. I pray she does not have lupus.

So, the summer so far has been busy, productive, and yet I am flaring still. I see my neuro this coming week to discuss the test results from my mri on my head. This parasthesia in my face has actually become strangely familiar by now. I just have to keep checking to make sure I am not drooling. My hands are hurting lately too. The neuropathy is spreading I think. ARGH!!! Anyhoo, I feel better just sharing this. It lifts the burden off of me and gives me strength to continue. Thanks for listening!