Inseparable

She will not leave my side. She is sleeping in my bed every night. She is never more than ten feet from me at all times. She is terrified of what is happening inside her own body and to be quite frank, I am also. The difference is that she can cry, get angry, and talk to everyone about her fear. I cry in the bathroom alone. I cry before anyone wakes up. If I catch her eye, it breaks my heart and I need to turn my head from her so she doesn’t see my eyes fill with tears.

Here is the biggest, looming, pressure- cooker issue right now: My daughter was accepted into one of the world’s most prestige graduate programs in NYC . I know that doesn’t sound like a bad thing, but when you cannot stand more than ten minutes nor tolerate the heat and you feel like you might die at any moment because your heart rate is jumping to 158 for no reason, it’s bad.

Three days on doxycycline and four days on Zoloft. Things are better in some ways yet worse in others.

Her blood glucose has stabilized. We saw her new endocrinologist again yesterday and he seemed a bit stunned when he checked her levels. I am perplexed. Anyone using a Libre knows it is not the same as a finger stick since it only reads the glucose in the interstitial fluid. Initially, her Libre graph lines looked like a red zigzag stitch across the low bar of the red zone. Reading her glucose levels was like reading a whodunnit novel; the suspense was nerve wracking and you never knew how it would end. Now it looks like healthy, normal peaks and valleys throughout the day and night.

Her tics have lessened almost completely. Need I say more?

Unfortunately, she’s still having trouble eating and I am trying to force her to eat as any mother would. Every time she puts food into her mouth she practically gags. She has lost six pounds in the last two months and she was tiny to begin with. She swears to me she’s not restricting food. She has no appetite nor can she even think about eating without feeling ill. Still, she soldiers on and tries. She must get food into her belly to take the doxycycline twice a day and she must drink as much water as she can.

I will continue to monitor and sit vigil checking on her throughout the night as she sleeps. One night soon, I pray, I will sleep peacefully knowing my daughter is fully recovered and strong and healthy and living life on her terms.

Borreliamiyamotoi@yahoo.com