From a Facebook post (still not able to blog but this is more like a blog so maybe the time is soon that I can come to this forum and just write. Hands shaking when I type or write. In due time. In due time Faith.)
Update:
Feeling very grateful that my mom has been here the past month to help our family through a very challenging time. Sad she is leaving in the morning, and Terry is headed back to work, but also know it is time and we need to all stand on our feet. It will be a challenge for a bit while I continue to heal but I have "faith" it will all be okay. I guess one challenge and hidden benefit of my brain being so scrambled is I don't remember much of the last few months or how bad it got, but I know it is better--- at least that is what they tell me! (just not as better as I want it. Soooo tired of this process). Still not quite sure how it's all gonna unfold -- errands, etc. but again...it will somehow. If you wanna help be sure to stay in touch as sometimes it's a simple few errands that you can fit into what you were already doing but for me..the driving there, doing and coming home is all the energy for the day. I know this will get better with time. Today I saw my neurologist who reminded me that my brain is healing slowly, but it is healing. And look at weekly improvements instead of daily, and allow 6 months for healing...not 6 weeks. And take more pain meds (again to allow the brain to heal). I want a guarantee I am not gonna relapse again. That he can't give, but he is really encouraged by my improvement and seems to think it is brain injury healing and not the encephalitis "actively" per say. I'm having a lot more pain on a daily basis than I would like to accept and taking daily pain meds feels completely out of character for me, but the pain is too bad to do otherwise. Whether the pain is from the brain still healing from the encephalitis flare or a side effect of a immunosuppressant medication I am on, only time will tell. He wants me to give it 3 months of this plan -- rest, joy, same meds...tincture of time. Of course, being vigilant for early signs of relapse, but just giving it time. I am hopeful, a bit scared (but who wouldn't be) and yet I have no choice. I'm realizing how "used to" relapsing and fearful of it I am, that I am always terrified "IT IS HAPPENING" that I miss that it may not be happening, but that my brain is tired or some other explanation. Speaking of tired brains. Off to bed. Thank you all for your love and support!!!!
Update:
Feeling very grateful that my mom has been here the past month to help our family through a very challenging time. Sad she is leaving in the morning, and Terry is headed back to work, but also know it is time and we need to all stand on our feet. It will be a challenge for a bit while I continue to heal but I have "faith" it will all be okay. I guess one challenge and hidden benefit of my brain being so scrambled is I don't remember much of the last few months or how bad it got, but I know it is better--- at least that is what they tell me! (just not as better as I want it. Soooo tired of this process). Still not quite sure how it's all gonna unfold -- errands, etc. but again...it will somehow. If you wanna help be sure to stay in touch as sometimes it's a simple few errands that you can fit into what you were already doing but for me..the driving there, doing and coming home is all the energy for the day. I know this will get better with time. Today I saw my neurologist who reminded me that my brain is healing slowly, but it is healing. And look at weekly improvements instead of daily, and allow 6 months for healing...not 6 weeks. And take more pain meds (again to allow the brain to heal). I want a guarantee I am not gonna relapse again. That he can't give, but he is really encouraged by my improvement and seems to think it is brain injury healing and not the encephalitis "actively" per say. I'm having a lot more pain on a daily basis than I would like to accept and taking daily pain meds feels completely out of character for me, but the pain is too bad to do otherwise. Whether the pain is from the brain still healing from the encephalitis flare or a side effect of a immunosuppressant medication I am on, only time will tell. He wants me to give it 3 months of this plan -- rest, joy, same meds...tincture of time. Of course, being vigilant for early signs of relapse, but just giving it time. I am hopeful, a bit scared (but who wouldn't be) and yet I have no choice. I'm realizing how "used to" relapsing and fearful of it I am, that I am always terrified "IT IS HAPPENING" that I miss that it may not be happening, but that my brain is tired or some other explanation. Speaking of tired brains. Off to bed. Thank you all for your love and support!!!!
