August 4th

Happy Hot Summer!
We look forward to them so much and then quite readily are ready for them to be done!
I like to get warm to the bone, for sure, but I also really really need to cool off.

I am having a difficult time figuring our "where I am" on my life to death continuum and it is even more difficult to communicate that to others.  In addition it is a fine line between being honest with oneself, with others and with keeping my head in or out of the sand. No one has a real time line for me.  No one has a real time line for anyone unless they are moving quickly to their death. Then it is a little easier to predict the timing.

I am under the care of hospice and have been since before my family was here. I had oxygen when my family was here but had no other assistive devices. Now I have a shower chair, a hospital bed, a nurse, Teddy who I see once a week, an OT I've seen just once but will see weekly for a little while. I see a social worker. I have a massage therapist but only get to see her 4 times total.

After my family left I went to see nearly every one of my doctors and hospice folk, as well as a new physiologist who is unique, wonderful, and a new hero for me.

I've had a lot of med changes which put me through a big spin and lots of emotions and struggles. I THINK AND HOPE all that struggle is settling down now.

First, I am NOT on my death bed.  I get up every day and do most of my own self care though Mike helps me with a few things, mostly anointing myself with essential oils nearly all over my body, thank you my Gilroys for all my oils!

I am still eating and feeding myself though I am easting less and less, which can be so very sad, like when we had French Night last night and I did not physically have room for all the food.

I mostly plan and organize my day though I'm having trouble with some executive functioning skills.

My struggles include fatigue, extreme fatigue like dozing off now and then as I am typing right now. Some days when I wake up I literally want to go right back to bed. I can balance and walk though only a short distance. I use a walking stick or a wheel chair when we are out and going a great distance.

I have a hard time following my own train of thoughts, I have trouble with memory. I cannot possibly keep up with texting or emailing, I am not replying most of the time. When I try it feels like I am drunk texting...not that I would really know what that feels like!

I have pretty big case of adema and there is no where for the fluid to go, so I am back to a low sodium, low fluid diet. No good to be limited fluids on these hot days.

I am overwhelmed with gratitude for the love I am receiving from my family and close friends who are very respectful and understanding when I say I cannot see them and also when they are here making me laugh so hard and helping me do the simplest of things, like Maggie sitting here right now ready to fix this post up for me. I am so fortunate that it is the summer and I get to have my family around so much.

Thank you all for your love and understanding and support. You are helping to keep me alive. For real.

I love you
We love you
Janet

Photos from French Night