Sunday, December 13, 2015

Prednisone in a Pear Tree

Aahh... nothing like the beginning of flu season for the immuno-suppressed, Readers! It takes Black Friday and squeezes the life out of it then spits out December before you have time to say:
"Wha? Now, how many days til Christmas?"

And frantic shopping. Wait everyone is frantic. why didn't they just shop Amazon in august like me?
oh. wait. kids snoop different now so when I heard J say:

"I'm worried Santa doesn't know what I really want, " and I thought of the gifts I'd wrapped in girly paper with ribbons cause I have the bowdabra, I was panicky.

All those projects we started back in the summer- well, me, not you- it's a good thing.
Last night as I lay next to the fire, I mean the sound of my wheezing sounded like crackling wood around the camp fire, I pondered my coughing voice.

It sounded ugly. but then something cool happened. I was actually able to talk like an actor.
Everyone but me has the talent to impersonate movies and then show off at dinner and holidays and make people laugh.
(I like to call this: Last minute gift wrap cause of Flu present. No wonder J. was scared... aha, ha, heh.
ahmmm. REally, it was hard to not use this fabric to make a pillow case because just in case the flu ruins this Christmas, I needed things wrapped, Reader!)

Even Jaden, my son, can imitate voices and actions. I am totally unable to. on paper, maybe.

If no one has noticed yet, I am not talented out loud. Two left feet for speaking; thanks to prednisone.
Dignity is denied you every step of the way with pred. , I swear. The more that happens while coming off it, the more I shake my head and feel sorry for the poor girl my former self sees raising her hand or baring her testimony in public. Or blogging!

Then a Christmas miracle..... I must have been talking to myself, or the fact my lungs felt peeled from my chest cavity, because suddenly-- I was Batman.Voice-wise. I stopped. I talked some more.

I have a crush on the actor. I said: "I'm Batman." And suddenly  I was what's his face.

I kept talking because this was so cool.

 To finally impersonate a voice! And then in five minutes, it was gone; no one to hear it, because it was in the middle of the night. No dinner to interject it into my bag of tricks; nada; nothing.
Hero to Zero in Five.  I laughed so hard. And then I had no one to laugh with and it got pathetic so that is how writer's are born, Reader.

! it went back to the squeak and it is hard to type to you and brag about it. Not because I am hunble But I am because I need an emmy for it. for motivation. (dry humor here, people.)

I wish I had siri blog. or better yet emoticons for my shirt so as an aunt to cute kids,

 knew how I was feeling when they see me with my hair naturally curly or cushings crimped.
which is a cross between some stick straight hair, frizzy, wavy in all the wrong places" curly.

being chronically ill is hard.

then you hit flu season and it is harder. we have to be uber vigilant. and then it happens anyway. but I read a quote off of a cancer friend's page that said: "Don't go gently into that good night; Rage."
I don't have cancer but thought I could probably apply the quote when getting an IV placed in a veing that has been on prednisone for too long and won't let a poor nurse have a break or something.

Don't you hate being sick? Man, I was really feeling it and then I was given junk mail that wasn't garbage and I found out about a new cure I helped pave with immune therapy.

years ago I posted about kids with nueroblastoma cancer and, in some of their honor, I read their stories. I learned about the oldest girl to live with it. she got chubby too on prednisone. so it helped to see her look cool, then chubby and still be cool, and no one forgot who she was, she didn't have to remind people cause her cancer was obvious.

(this felt rose was made by my new friend, Erin. she has an etsy shop called: The Gray Rose. you will fall in love and buy Christmas presents starting next year cause I think she closes soon so hurry.)

Being immune-suppressed is not fun. But then you see a CURE from SEattle's children hospital and the T-cell therapy is 40 years in the making and loads of suffering and research and loss and then....

TA-DA! A kid who had it then turned into a 20 year old adult, walked into the center to find he had it for the 3rd time!!!!!!!!!!!!!!!!! they did the therapy and he is CURED.

They taught the T-cells, REaders.! Remember Taylor Swift wrote a song for Ronan? The son with the bluest eyes and whose mom blogged about him and then he left us. Remember? I blogged about him. She suffered so much and missed him and blogged about it and started a non-profit. And she started me studying it. And I met people that had lived and died on paper in front of me. It was hard but I did it in their honor.

Like you would give a salute to someone who died for us serving in the military or pioneering meds that helped us today.

Where was I originally in this story? this is getting too serious.

 Oh, shopping. And presents. And Christmas. Finding it. Then losing it. Then finding it. Then the flu. Oh, yeh.... that's where I am at, editing posts to you, Reader, and getting them out really slowly cause you all know how much I love to edit and no one has volunteered to do it... sooo..... you have to put up with this and my not capitalizing, placing commas in random places, etc. Run on sentences that j. inherited from me.

So let's look at Christmas Past.!

Wow! how cute! wish I had kept that stick so I could re-purpose it with white paint and use for the tree stick with starry lights. dang.
(Why didn't I keep this stick from years ago? I have been trying to find a stick tree for my room now and nothing.... if you have a stick that would work- I need it to decorate!)

Thankfully, real stores started selling Christmas back in October and I was able to get a jump start on the decorations and such. I found the cutest things I had to spray paint glue on so the glitter would still be there by December. (or even the next day- some things are cheap for a reason. So weighing quality is always something to consider. Reader. )

This last month I had Padre cut some more wood so that I could try my hand at pyrography again-  I know it sounds like pie you'd have for Thanksgiving. But really it means writing or drawing with a device that looks like a small iron.  instead of keeping to the simple "leaf" mlike last year, I thought I'd broaden my horizons and try to do something more elaborate.

This is where I learned, that, 1) I should stick to leaves; 2. watch youtube videos on how to do something first before I decide to try it; and finally 3.) Patience is a good thing to have with this sport, I mean hobby.

Like the old waffle iron from Christmases past- I put it in the snow a few years ago, I also stuck last season's wood heating wand in the snow for getting too hot. So it would cool off before I put it in the trash can.

(see Christmas 5-6 years ago when I made Grandma Beck's waffle cookies.)

However, It was good for me to try a new thing while under duress. I decided to take my own advice and stick to it until I felt I gave it my best shot. With arthritic hands and no clue what I was doing, it meant watching some seriously tedious footage of people that do this sort of thing. Kind of like watching the guy paint on channel 10 about 35 years ago.

Then something amazing happened. I learned something. but I was too tired to try it out and had to wait. you will too. sorry. I have to prioritize. guesstimate how much cortisol I will use up. that's tough. It is tough for even the best doctors. I talked to one on the phone one night- I know, amazing like in that movie where a lady says the f word cause her son has a fever and it is bad, but it was a movie about jack Nicholson when he is a writer and has OCD.

Anyway, this youtube video was amazing. She turned something tedious into a buffalo with heat against special wood. I was impressed.

hope you are too.


go watch Christmas Carol, or Dr. Suess' Grinch with Jim Carrey. Or Black Knight with... that one cute guy. I forget his name. how does that happen?

Readers, I want you to know I learned a lot on the10th, 11th, and 12th. and un-learned it. then wrote you to help learn it again. lots of things, again. sheesh! this life is super crazy and I miss being able to speed text my friends, or bomb down and see them and play.

but guess what! J. was sick too and we got to hang out. and he found out about being sick more. and then he had homework brought by his buddy and we fought over math! it was soooo fun. I got to pretend I was a teacher again. and so I spoon fed questions to him and it pissed him off cause I wouldn't just tell him!

Readers- he actually came home and told me he got a good grade on it. and I was able to remind him about reading instructions cause I was made a fool in 6th grade when they made up a group of us smart and not so smart kids and made us read jane eyre and I did. and I loved it but it was so hard. and Mr. Principal at TV ele, gave a quiz.

Not on the book but handed out the paper and it had all these crazy things on it to do. stand up. pat your head. look up. down. twist. some kids weren't doing it. then at the end it read: "Don't do any of these things."

I went up to the top with my eyes- there, in the instructions: "Read all of the page before continuing with the commands."

I got to tell J. about putting his name on his paper.

"Oh, this is a homeless assignment. it will be so sad."

he hated that too cause I was his sub teacher and volunteer for awhile when he was little so this was like talking down to him. kids hate that. so do adults. and tweens.

p.s. I read things from the bottom to the top sometimes for some reason. I think that quiz made me literararily dyslesic. I just made that word up, too. so thanks Mr. Principal. but I love jane eyre. she became independent even though she had a tough life. and I have read it four times now.

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