Welcome and thanks for visiting me here! If you are new to this blog, start with "Bumps of Beauty" and other earlier pieces. "The desire for freedom, as it motivates us to our
natural state is great joy;
The desire to be free from the way things are is great suffering" (Stephen Levine)You can email me at firstname.lastname@example.org
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The days of pulling myself out of the quagmire of pain feel
relentless, each foot threatening to lead the next astray as I forge, then
tiptoe, on ahead. Astray from what I do
not know. One or two tolerable days and
bam! I’m in for weeks on end of endless
torture. Asking myself “how much more”
is futile yet seemingly, unavoidable. I’m trying to out of my head and stay away
from the fear, but when the pain hits the fan like this….it’s near impossible.
I did get a call from a Reiki guy who does it long distance. The last time, I felt my own hands grow warm
as I put them in the appropriate positions (I have a level one Reiki
certificate though I never do it. Level
one means you can do it on yourself) and felt relief almost instantly. Then again, I was in bed and almost asleep.
Although it’s not warm, the humidity is high, and low
pressure always makes the pain worse.
But I doubt moving to a dry climate would help, given all my support
systems are here in rainy Seattle. So I
watch my hummingbirds live and my eagles per Webcam, reading, listening to
music, watching movies, writing and trying not to …whatever.
Today the neuropathy has me by the short hairs. It’s been that way for over a week. Trying to eat and stay hydrated but it’s hard
to remember to do so when it’s like this.
Then I read about people who have challenges even greater than mine and
I spin downward. Yikes. I hate this and I hate that all my entries
are so negative. I go back and read some
of more positive ones, back when I had enough “good” days to manage a positive
Two of my three nieces were just here for a visit; that
always cheers me up! Listening to their
college stories and forcing them to listen to my antics back in the day…a
gazillion years ago! We laugh. It helps.
And I just read a recipe for chocolate pudding made with avocadoes. One of my helpers got me all the ingredients
but the avocadoes aren’t quite ripe so we’ll try for tomorrow to make it. Actually, I’m not a pudding person but it
should be high in calories, which I need, so worth a shot. Here it is, if you want it:
1/2 c. unsweetened cocoa powder
2 ripe avocados, pitted and peeled
1/4 c. skim milk
1 tsp. instant coffee or espresso
6 Tbsp. honey
1 tsp. vanilla extract
Orange zest, for garnish
Toasted coconut flakes, for garnish
Flaky sea salt, for garnish
Put avocados, honey, skim milk,
cocoa powder, instant coffee and vanilla extract in a food processor. Blend
Scoop pudding mix into a glass bowl
and cover tightly with plastic wrap. Chill in the refrigerator for at least 30
minutes (up to overnight).
Once chilled, spoon into four bowls
and garnish with toasted coconut, orange zest and sea salt.
Words have been stuck precariously in my head, wanting to
escape but unsure of where the exit lies.
Putting those words together has become more and more difficult as my
need for painkillers grows. I use way,
way less than the “recommended” amount; the side effects are too daunting and
miserable to contend with so I make YouTube videos instead. That is daunting as well and I have yet to
figure out how to draw in viewers or even if they are worth viewing in the
first place. Like this blog, I’m really
only interested in having people with NF or other painful disorders read/view
what I put out there. And friends and
family of those who are dealing with the situation, in an attempt to have them
better understand what the challenges are for us.
I did this latest one because I was having a day from hell
and wanted people to understand that all the “tricks” in my book on pain
control sometimes fall short, or fall not at all. None of them are polished in any way. But I never thought of myself as a Steven
Spielberg or Robert Altman or anyone else behind the lens of a camera. It’s an iPad, for heaven sake. One funny thing happened to me on the
journey; I was watching a movie on Netflix and there was a scene with a
character trying to make a video using her smart phone. But it had the iPad video technology and when
she was done with her little bit, she could not get it to stop recording. That happened to me more than once and I had
to do the whole thing again because I couldn’t figure out how to “trim” the
last few seconds out and ended up deleting the whole thing. Funny.
Or not.....here's another.