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Monday, May 25, 2015

Quagmire (with pudding)

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 outlook.

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:

Ingredients
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
Directions
Put avocados, honey, skim milk, cocoa powder, instant coffee and vanilla extract in a food processor. Blend until smooth.
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.



Thursday, May 14, 2015

New Challenges

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. 


Friday, May 1, 2015

Something Different

Thought I'd try a video blog entry.  Vlog, they call it.  Anyway, I put this on YouTube as well








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