Dear my loves
I have been working on this update for over a month. Then on February 5th at age 29 my special homie friend love Brett gained his angel wings. He has been a huge blessing in my life for eight years. He stayed with me through my toughest times and we shared the most incredible memories having fun together.
Brett has battled terrible chronic complications from Lyme disease for over fifteen years with dignity and grace. The loss of such an extraordinary young man is devastating but I am confident he is soaring up in the heavens pain free and at peace.
Where there is great grief there is great love. That is how we move forward, with love. So......
Happy New Year
Happy Valentine's Day
February is Rare Disease and Autoimmune Encephalitis awareness month
Moving forward is my intention this year of 2024. My neurologist prescribed more IVIG and will increase the dose if insurance approves. She is still concerned about my head position and refered me to see a physiatrist rehab doctor.
I work very hard on my speech therapy exercises part of a motor program. It i's helping me speak clearer and have better breath support. I still get frustrated when misunderstood. I sometimes keep trying or just move on..
Occupational therapy requires me to be in a loud gym so that does not work for me. Casey does OT like activities and massages with me.
I feel bad that I have missed many funeral services throughout the six years due to my condition. I feel blessed that Brett's services were very local. Also his amazing father let Rob, Mom and I attend the wake early before the crowds. I think he is happy I attended and was laughing at my involuntary outburst.
Brett is one of my biggest inspirations to keep on keeping on. Wabi Sabi was our special phrase we learned together. It means embracing impermanence and imperfection.
I live an isolated life and crave connection. It brings me to present moment instead of constantly reliving past memories of my old life in my mind. I am beyond grateful for my loves who keep me involved in their busy lives and for the occasional visits .Being with my people feels like magic.
My nurse who has been with me almost five years will be moving on as she now is a RN registered nurse. It is a process to find and get used to a new nurse. I have a very nice new nurse who is filling some part time hours.
Lawrence is doing okay in his new house with caring staff. Currently we are struggling to find him a suitable day program with openings.
I appreciate all messages and prayers for Brett's family.
With greatest gratitude and eternal love