Update on Paige

The past couple of days have been rough. I kinda knew ahead of time they would, but was thrown off guard by some new symptoms. 
We left Friday to go to my mom’s overnight. I wasn’t sure how Paige would do, but I couldn’t leave her at home when I was gone. I knew she would try to be herself and funny and active in front if everyone, she doesn’t want anyone to see her ‘sick’ or ‘weak’. So she expends lots of energy trying to walk right, speak right and just be Paige. This often leads to severe fatigue later and some new symptoms. These are the reasons we try to stay home, to keep her in her normal environment where she can just ‘be’, sick or not, just be who she is that day.
Friday we had some new symptoms which are hard to explain in their entirety, but basically Paige looses her vision. She can see light and dark and shapes, but can’t make anything out at all. When this happens she also can’t speak right or put thoughts together. She is kinda out of it. You can see her facial expression change, her eyes go crazy, her mouth kinda hangs open and her color changes. The first time came in quickly, lasted about an hour and left just as quickly. She kinda shook her head and she back to ‘normal’. This happened many times over Friday and Saturday. Some lasted a few minutes, others nearly an hour. Two people who saw these episodes yesterday said they look like seizures (both are medicates for seizures), and I had thought the same thing. She doesn’t have the full body shaking, but she does have the crazy eyes. 
We aren’t sure what is causing these new episodes, is it the Lyme? Are they caused by the die off? Are they reactions to medicine? We don’t know. And may not know. We see her doctor on Saturday and will be discussing all of this with her. Hopefully we can get some answers. 
As usual, Paige takes it all in strides. Making most of it a joke and laughing about how ‘crazy’ she gets. As I was feeding her dinner Friday night I was laughing and crying at the same time. She was being silly and we were laughing, but it was heartbreaking that she couldn’t feed herself, couldn’t speak, couldn’t see me or remember what she did 1 min before. 
Lyme is an emotional roller coaster for sure. As a mom I need to be protective but give her space. I need to help her but not strip her dignity. I laugh when she can laugh at herself, but I cry that she has to laugh at herself. This journey is not for the weak…that’s for sure. 
We are home today, we got home late last night and Paige slept OK. She has gotten up just to take her meds and has gone back to bed each time. When asked how she is feeling she said terrible and she is exhausted. Much as I expected. We are letting her stay in bed all day and recover from being away from home. 
Thank you for your continued prayers and support.

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