Garry and I planned to have dinner together with Lisbeth last night at her favorite restaurant, China Rose. She loves the Chinese food. I picked Lisbeth up from her house and we arrived at the restaurant a few minutes before Garry, who was coming to meet us on his way home from work. Lisbeth's staff informed me that they had given her 1 mg of lorazapam at 5:00 because she was complaining about her eyes hurting and having the scary seizure feeling (aura). While we were waiting for her Dad, Lis began to experience strong seizure auras. This sometimes manifests by her eyes darting upward, and out toward each wall (forgive me now, but my dark humor has kept me sane throughout my journey with Lisbeth) and this song comes immediately to mind. Lisbeth says she sees the lines, as in an ocular migraine. These unusaul auras started to occur for Lisbeth a few years ago, and we described it to her neurologist. He brushed it off and said that this was just anxiety, and probably a behaviorial thing. He'd never actually seen Lisbeth going through this. He always was impatient, in a rush, with one foot out the door. (For the record, we do not see this doctor any longer. In fact, he had his license suspended for drug addiction. Hmmm, could explain his impatience...) I have never taped Lis having an aura like this before, and last night I caught a couple of minutes of it on this video. Lisbeth's current neurologist has instructed us to give Lisbeth her PRN lorazepam when this happens - Lis is obviously experiencing some sort of neurological disturbance - not a full blown seizure, just the edges of one. Lisbeth calls the lorazepam the line pill, because we give it to her when she sees the lines. Can you imagine anyone suggesting that this is behavioral?It lasted about 1o minutes before her lorazepam kicked in, and then Lisbeth was able to enjoy her dinner. Thank God for meds.
Hey Mom,
ReplyDeleteThis reminds me of how difficult it can be when someone in my life asks, "So, how is your sister doing?" in casual conversation. Well... what do I say? The short packaged version would be something like, she's doing okay, still struggling with seizures but she lives in her own home with round the clock care, has a wonderful team of people who care for and support her, and continues to cut beautiful snowflakes. The longer, more accurate version would be something like this blog. Thank you so much for putting this together because explaining "all the ways of Lisbeth Miller" is extremely complex and not always as beautiful as her snowflakes are. There is so much that you and Dad go through with Lis, and so much of it is hard and uncertain. This blog seems like the perfect way to let people know the "true way of it", the truth of Lis' life today and how she is doing. Also, maybe, hopefully, it can reach others who have similar stories and can be comforted in knowing they are not alone. When I am asked this question, and when I try my best to answer it, there is still that little voice inside that says, you have no idea, if you only knew... But today I have hope that someone who doesn't know Lis well can come to understand better what Lis' life is like and what it means to care for her.
tears.
ReplyDeletethankyou, sweetheart.
is deeply touched...
ReplyDeleteThank you so much for helping us to understand the depth of the painful parts. Also to see the beautiful side and all of her gifts and talent...you have an amazing family!
Blessings to you...
Not only all the ways of Lisbeth Miller, but all the years and months of all the ways--what your family has lived through and seen and had to or tried to cope--the on going cope--the scope of the cope--the unimaginable.
ReplyDelete