Faith Island

(From a Facebook post. I have been trying to blog but just haven't been able to lately. Also have  needed to express how I felt to my friends. I felt really sad this morning until I wrote this. Immediately after writing and getting clear with my friends, I felt better. And better still when people reached out.)

Keep trying to write something to express this and I just don't really know how...so here goes. (Please read...thank you in advance).

Faith island feels terribly lonely and hard these days. After 3.5 years of being very sick (and almost 20 years total, but I think I should just lose count), the support is different. If I ask for help specifically stating what I need, it is there and I am very grateful. But what is missing is my friends interacting with me --- almost at all. I know everyone is busy, but man it gets hard and lonely on Faith island. A text, an email, a card, an occasional phone call or visit or walk, etc. means the world to me. Being chronically sick means invites to parties, events and even plans made often get cancelled. And having Encephalitis/an acquired brain injury -- I know I can be unpredictable and not the easiest person to be around sometimes. I'm still me though - the friend you love. I still enjoy laughing and just being with my community. When you reach out...even a quick text, message, etc. - gosh it means the world to me. Extended interacting can be hard on my brain, even though I love seeing people. Short visits one on one or just a few people, in non-noisy environments are best. Even a quick note or email. Anything - some interaction. I can't tell you what medicine it is. I miss hearing about your lives, your kids, what your days are like. I miss my friends...terribly. Trust me, we don't have to talk about my health challenges unless you want to know details. I'm committed to getting well and know that it will happen. The process is still unfolding.
Anyway, I apologize upfront for saying what maybe I "shouldn't say," but there it is.
I remember when I worked with parents of very sick children, they would talk about how there was tons of support when the child was first diagnosed and then maybe if they are in the hospital or if hospice gets called, but otherwise it disappears and they are left on their "island." Doesn't have to be this way. Reach out. If not to me, to anyone in your life that you love. If they have major life challenges, don't be scared about not knowing what to say. Often all they want, all I want, is human interaction.

Okay...I'm done.
I love you all. Thank you for being in my life.

A Window In: Dr E visit...onward with hope

Today was intense.

Left for Dr. Estevez appointment (my neurologist) at 8:00 a.m. I felt so nervous. I trust him, but it's so hard to go to appointments. There is so much noise, lights, talking, questions, thinking and deciding. I brought my husband because it's too hard to go alone anymore. My brain overloads and I don't understand or remember.

Today was no different. Sunglasses on for the crazy bright lights. I move us to sitting in "my chair" in the waiting room. It's the chair with the least amount of noise I discovered some time ago. While in the exam room for 45 minutes before doc showed up, I reviewed my notes and questions. It seemed like the more I reviewed the more confused and nervous I got. Finally I gave up. I was so exhausted that I had to lay on the table in the dark with my eyes closed ---- and the appointment hadn't started yet.

I want to write more about what happened today but I can't. My brain is fried. I'm nauseated, in pain and tired, but not sleepy. Oh dear, this brain is really something. What seems most important from today is how Dr. E stressed that I can get better, it's just about finding the right combination of treatments and maintaining hope. He said this when he came back in the room to find me in tears in my husband's lap drenching his shirt. I wasn't crying from sadness but from exhaustion. When my brain hits overload from talking and thinking I often end up wailing. Terry explained to Dr E what was happening as I think he thought I was sad. Not to say this isn't sad or scary or maddening at times, but if I get angry or short tempered or cry, it's probably unrelated to what's happening and more related to the fact that my brain is overloaded. This is hard for me and everyone around me, but it is just reality. I learn to manage more each day.

Managing. Accepting. Having hope and being realistic. Seems to be all I can do. Onward.....