Friday, April 11, 2014

Why would Satan be Carrying a Flashlight?



Okay, so I watched a movie called: All is Lost -

Not because I needed to find anything but because my P.T. asked me what I was gonna do after he tortured me.

Me: "Watch a National Geographic/BBC video about Africa."

Him: "Have you ever watched Out of Africa? It's my wife's favorite show."

Me: "Are you kidding?? Of course I have!" (it was and is up there at the top still. I loved it so much I had a sleepover with the Celesstial Five, as The Torment called us, and wanted them to watch the show. But he took over and ruined it and I think I ended up crying cause they wanted to joke with him, etc. It was 6th grade what can I say.

Me: looking up at the cieling and repeating Meryl Streep: "I had a fhhharm in Affrikah."

Him: "Have you seen All is Lost?"

Me: " No, what is it about."

And then he told me. Spoiler Alert!!! There is no talking. the whole time. He swears once. That's it.

My P.T. told me about Robert Redford being alone on his vessel, it gets a hole in it, then he's in his raft, and several ships pass him by, then the raft goes down and he is sinking at the end when a hand reaches down for him.

ME: "So he was saved at the last minute!!?"

Him: "He dies. Death reaches out for him. Creeepy!"

So I had to get it and watch is ambiguous ending. And wonder P.T. was right; the hand of death reaching for him. And J. had to watch it with me.

J: "That was the most boring movie. Technically, we just watch him suffer the whole time. What is the point of that?"

ME: "It's like life, a metaphor! But does he get saved or was that a hallucination or the hand of death??"

J: "Why would Satan be carrying a flashlight?"

Me: "maybe it was God!"

J: "Why would God need a flashlight?"

Jaden makes sense.




Wednesday, April 9, 2014

Still Here... Stay tuned


 
*picture courtesy of National Geographic
 
I don't know how many times I have opened up our Spring break post and added something. Read some of it. But I am, of course, dueling with disease while trying to write and it is hard.
Especially when I am trying to "Go Pro" at being a mom and failing miserably.
 
That just gave me an idea....
(it's all the rave to put cool you tube videos up of snowboarding, etc. What would it be like if I just put on J's helmet, put on a cam and uploaded it for all parents, everywhere? insert laugh here.)
 
 
The last few weeks have held amazing highs, literally- like in Alta, Wyoming, high.
 
 And then lows- like right now.
 
 I am sitting here with wet hair and contemplating placing an order on some mouth swabs from a medical supply store. - I know. Don't be jealous. But remember to take care of your teeth- starts with healthy bones, flossing, and brushing. And mouth washes are good.
 
BUT
 
as you age, weird things start to happen in there.
 
It hurts to brush.
My mouth is so tender and raw and must look like the rest of my digestive tract.
I'm on Imuran to anyone who is reading this and wondering:
 
"What are the side effects?"
OR:
 
"Should I go on this cause it makes your immune system drop even more and you have to do lab work all the time to check for pinky toe failure?"
 
OR
 
"Will this make me more susceptible to another Shingles outbreak?"
(this is a big one, folks. Shingles isn't just for old people.)
 
The day's good news to report...
 I have watched some TV. Couple of movies over the past five days. Both involved shipwrecks and so typing right now, feels like me out bouncing on the waves in a life raft with a tiny pencil and notebook. -- Life Preserving companies need to add more pencils and paper to their kits.
 
So if any of them are reading this- MORE PAPER and PENCILS! Oh, and a pencil sharpener. I hate using a knife to sharpen one.
 
Oh, and I watched General Conference which generally is long for even the best of us who belong to The Church of Jesus Christ of Latter Day Saints.
 
Normally, I take notes. But this time I just listened and thought, and let what was said speak to me personally. It was really good.
 
I think I need to listen again and take note.

Saturday, March 29, 2014

I Look like GRU

Kids say the darndest things.

And you can bank on it being the truth! J. has had some killer quotes over spring vacation. But this one took the cake.....

J. was riding with me on errands and of course I had to complain about my potato body and toothpick legs and arms (from long term prednisone use.)

In an attempt to make him understand what my poor feet were feeling I went into detail about the complications of a body in such proportions.

Me: "My poor feet have to carry around this!" me empasizing the belly area and pointing out how top heavy it feels and my POOR, POOR feet. Then I gave the toothpick analogy. I happened to be wearing some black Asics that emhasized the point of my tooth pick feet in contrast to my potato center. And now I have no neck. It just blends down into my shoulders.

J: "Kinda like Gru!" he laughed. Then the dust settled on that statementm and we looked at each other in a moment of silence. He was dead on. "Mom, you look like Gru....."  he uttered in astonishment.

I hope they put that on the side effect section of prednisone from now on.





Saturday, March 22, 2014

Poop in A Blender = Crohns Cure





Yes. I just said that. Poop in a blender. Actually I typed it. Why? Is it the prednisone making me write such a thing??? HOPE NOT. The reason is this.....

The other day I googled: FECAL TRANSPLANT (not because I felt I was on to something)


after a PA had told me about the emergence of a

 
 "New Cure"

for Crohns!



You don't go around hearing the word "Cure", or throwing it around if it isn't true, (unless you haven't read all the evidence or medical journals.)   A P.A. threw it in my direction recently. I believe she was trying to give me hope or something as she was squatted down next to my hospital bed while a nurse was trying to put place an IV.

She spoke to me through the bars of the bed as if to say: "Hold out a bit longer! There is hope on the horizon!"

My flushed red face- I could feel the heat off it from the inside out- was turned toward her while tears  unabashadly streamed down my face in front of "them." (ER people like nurses, P.A.s, phlebotomists, CNA's, X-Ray techs, janitors and secretaries.)

Due to the situation, I wasn't up for much talking but I looked at her in all seriousness, listened when she said, "Cure"  and Then she said, 'TRANSPLANT.' 

I paused.

And I wondered: "Which part?" Cause my brain to my toes are affected by this dumb disease. Then she said,' Fecal' and I was back to not paying attention and drowning in my situation.

 I'd heard rumour of it before; putting a healthy person's stool into your gut and then somehow it would make the intestines cleaner and good as new.
 
Rrrriiiggghttt.
 
Hadn't these people heard of E. Coli break outs?
 
 

Several days after the visit, when the blown vein on my IV  arm had started to look like a huge purple birthmark, I googled Fecal Transplant. Oddly, the video I found said: " 7 hours old. "

Apparently, down under, in Austrailia, a doctor is booked- a year and a half out- because his schedule is full doing these transplants.  Come to think of it, most all my specialists are this booked and they aren't transplanting feces. His research and transplanting of human feces into sick people has shown signs of curing the disease.


So, like I mentioned it is a video. Yes, a video. The journalist, wearing a flimsy mask and standing back aways from a white lab coat wearing tech, was standing at a long, clean looking, metal counter.
She was as at ease as if she were in her kitchen and instead of dicing tomatoes, onions, and herbs for home-made salsa, she was  scraping  poop out of a container with a spatula.





In horror I watched and I think I said:
 
"Please no,"


 when she hit the


 puree button


on the really nice comercial blender.

Two large turds had been put into the see through blender, mixed, stirred, then placed into a very large syringe. On international T.V.


I am not kidding. I chuckled just now but I wasn't when I saw this the first time because
I. was. horrified.


All kinds of thoughts swirled in my head, like,  I wondered who the heck's poop that was and if the pooper was paid much like sperm donors? Was it the doctor's? Whose was it??? The Patient's grandma?

People, I mean, Readers! This is not like the simple way medicine evolved and we found out that the culprit could be the cure..... and immunizations were formed..... this is seeing a doctor squirt blended poo into your intestines!!!

I can't even write about it! Either it is too funny or it is freaking me out. And I don't feel well.
My foot and ankle hurt. Walking on them causes veins to break. And little balled bruises in other places along my legs. Research led me to find out it was not just prednisone but could be Crohns that has a hand in it. Which I can testify of validity because it started to happen in my early twenties when I wasn't or had never been on Prednisone.

Also my right eye is having inflammation, a sign of flaring. Somehow the pupils stay dialated and it floods light into it causing a migraine. Going on four or five days of this. And it just feels like ocular pressure.

I'd tell my doctor but for some reason my insurance is wacked. Is anyone else out there having problemos with this? So they kinda aren't paying attention to me and I don't blame them because they probably aren't getting paid.

Supposedly by April Fool's, things should be straightened out. I wonder if I will make it, or go through laborious phone calls with interim insurance people. Then have re-notify the docs after the interim. It's rather stressful.

My goals have been small. Each time I get up I vow to put one thing away. File or put into a pile some thing.

The wind is blowing here in Idaho now and so it's spring. Spring cleaning from Winter messing.
I made the mistake of starting in the closet. And drawers. Sadly everything is now strewn in the room.
I wanna blame prednisone for that one.


 Why I feel the need to online journal when I sick is beyond me. Somebody please bring me a Jamba.
And not get the blenders confused with the fecal transplants..


Tuesday, March 18, 2014

Four Star Review!! And it Snowed, Dang.



*****Before you read a post written from some time ago, I must remind you that it is-*******

BRAIN AWARENESS 
month!

After I looked into the movie: Crash Reel, they email me like I am part of the crew and sent this information. So I am passing on the love.

Actually, I do feel part of the 'brain crew' after suffering two concussions in conjunction with my
lovely auto-immune diseases.
So I don't mind being on the auto-email.
It doesn't help when you do stupid things, like I did on the second concussing,

but the movie
is

there to help raise awareness to the trauma our kids face as we advance in sports and Rec.
Or even the simple act of walking outside on a sunny day, mounting your skate board for a quick flip and
 doink; you fall.

Hit yer blimey unprotected head.
Here are the stats:

At least 173,000 plus falls like this happen a year.

Wear your helmets!

I am talkin' to YOU- J.!

 Even if ya think it's nerdy and never did as a kid, survived many a goose egg- and are here to tell the blog.....

WEAR the HELMET.
And the afro lookin' thing that protects the helmet.

Sure, you'll get the ribbing now but when others are drooling in the nursing home you will at least be having a candid conversation with loved ones about the most recent events.

More movie plug:
I loved the movie- it is much more than a Snowboarding movie.

It is about family.

And loving who

you are



whether you have 'Up Syndrome' (a.k.a. Downs Syndrome) like David, or are an Olympic contestant who
suffers a horrific crash leading him down a road that is so painful and painful to watch- because his beautiful brain

is forever changed.

And his dreams have to change.


So google Kevin Pearce- go on his site: Kevinpearce.com
National Geographic (another past fav. mag of mine-)
named K.P. Honoree Adventurer of the Year for 2014.




 Buy the movie. Or a sticker and shirt...
or just watch his stuff.

It is so good to see this kid, I mean guy, HAPPY after what happened!

If you watch the movie or read about them, you will find yourself falling in love with the whole Pearce family's brains.

Their son, David, steals the show. He has Down Syndrome. He doesn't like his disability.
When he tells us this it aches. And suddenly my disability is something I need to come to grips with, be more attentive to other's disabilities, and..... just roll with it.

 David shows us a closer look into the brain.
And it is lovely.
If only we can find our own brains lovely when they don't do what we WANT them to do....

They are amazing, show us how to be kind to one another.
Something my brain still needs working on. BUT it does show that Kev's accident, David's Down Syndrome effect the actions, thoughts, and feelings of the brain.

And the Dr. at Craig Hospital where KP spent three months of re-hab tells us we have to discipline our thinking.

that said....
On with the show, er post.

*Another addition to the original post: IT FREAKIN SNOWED.
It felt like July all last week here in Idaho. Well, maybe more like end of June when the wind is dying down.

We were sporting only a sweatshirt. And down south it was even warmer.
So guess what irritating sound I heard when J. came home from school today??
Yes, you guessed it.

More pleas to SKI.
I totally thought I was in the clear. But if you live in Idaho, nothing makes sense.

*******************************

Here's the post I wrote months ago, or something:Actually, just read it another day. It's a yawner.

Does anyone read the reviews before buying a product?

Or look into Consumer's Reports?
 
Do any of you, dear Readers, write reviews? If not, then you have a way cooler life than me.

 My only hope is that my reviews help those really needing an honest opinion. And to avoid making a mistake, or realize an item might run small or large and by how much.

I hate to think that this might be why I was put on earth.

But when you are enjoying disease- which can feel like a bad case of the stomach flu accompanied by thros of nausea- or possibly you feel like John Adams heading to Europe on a ship and have a touch of sea sickness,

 WELL,- I give back to the community by form of  The Review.

Yes, my email box is full of letters asking me to rate items. They want MY opinion!
They know my name and beg for a review! Wow, I feel important. And there is now something that I can do to help mankind; give Reviews.

So, I have given it whilst in bed.

Sometimes the poor service given when making a purchase can make a person place a

bad review.



 And the happy customer who bought the good thing is too busy being happy to say that it is a

 good product.




Which leads us to ask:
 
Do you Take the Chance??
Do you purchase???

As a girl I recall being at a restaurant and my very gregarious aunt being quite hard on a waitress for something that seemed sorta minor in the waitressing world.
I cringed.
Did she really need t slap the sap upside the head for a simple mistake?
Her actions did make people stand to attention, provide excellence, but were probably gossiping about the mean customer back in the kitchen.

once again- cringe.

What happened was something that I

I would have let it

 slide,

possibly not tipped as well, or kindly told her about the mistake.
No way did I have the courage to stand up like that. Or the cruelty.

Nor did I think it a situation needing standing up for. I mean it was eggs and toast- something trivial.

HOWEVER- since then I have found things worth standing up for.
And I found my voice.
 

Well, since this week was a real doozy when I look back and review it, I am doing review on products that I think deserve my say,since I have appreciated reviews others have given when they could have used their time to walk their pet ferret.
 
Whether it was to order smaller or larger, the material lasting only so long, the time and effort of the material, how the service was from the company- I have gained a lot of knowledge on a product and found what I needed.

And since I haven't published a book at all, except this quaint little blog about my life and the funny and not so funny, the reviews almost make me feel important!  Like the shrewd man on Ratatouille who reviews food and everyone hangs on his every perfectly worded review.

Or it is akin to:


people who taste wine


and then tell us non drinkers what it tasted like.

 It is amusing to know what we are missing and if it would taste good with Tillamook cheese, for example. So we settle for Salomi squares and cheese on a platter at Christmas. If the Christmas fight hasn't broken out yet and the toothpicks used as small swords or poking another in the eye.
 
 The review



is there and we can treat it like a book of sorts,and it can transport us into the moment.

Whether you are wearing smart wool socks on the ski hill or shaving super sensitive skin with a woman's Remington shaver- it's good to have others input before you buy.

NO thing like being on the top of Grand Targhee, with wild winds whipping around you and fog creating a screen in which you can only see your goggles in front of you. At that point one would have looked into other gear besides socks. But what do you do? The socks kept J. toasty and he made his way down the hill- albeit in a few separate pieces.

This is what the teen boarders had for a review of his fall off the top of the highest point with some Indian name I forget:


Dude! That was INSANE! Did you see that kid fall??

I can only think of a few tips from Bear Grylls and the hopes of Indiana Jones coming in his Heli to save me cause he lives in those parts. Jaden was glad to be alive and wasn't afraid to give his Reviewers a few words. He doesn't say that here, but when I heard about the fall, the reviews, and his response- I was in complete accordance with it. Took guts. Heck, I wouldn't have even dared go up the fifteen minute ride to the top. And if I did, I'd take off my skis to save time and just slide down.



Other times, like after you have purchased the item and then get online to see that there were reviews stating the same problem, it is a bit of a blimey reminder that you should have done your homework.

Or used simple math like what 2 oz. looks like and how easily it can be sprayed. But let me tell you, those two ounces made me a believer.  * I love No. 2 And I wish I could work for this company cause I have several really good ideas on names for other concoctions to eliminate smell.



'Before-You-Go' Toilet Spray from Poo-Pourri








Sadly, it doesn't eliminate disease. Or Depression. Or meds that make you that much more reviewable. And when the week comes to a close it leaves you feeling a lot like that hanger in Dr. Suess book that is just left there in the middle of nowhere.

Or the one left sock in some cavern. Dr. Suess must have surely passed through all things in order to make funny out of not-so-funny in life. The reason this is coming to me is because his books were held in such high regard by J. , that I had them almost memorized. And I was really hating the author for making me go through such hell each night with the tongue twisting jargon.
 
But the books are comforting, like the bed up above which to me has always signified home. A safe place. Ironically I put it there thinking that the window from a bedroom would be quaint and inviting but the bed has been where I have been. A lot.
 
Besides the bathroom. Fortunately I have had a good bed. A friend of mine told me about the awful time she had in her bed and that her and her husband had to turn it over. And then just turned it back.
 
Beds can be a real back breaker. Like the taco bed when you are married. Oh, I hated that bed. Thankfully, Padre's advice on never throwing away a receipt or warranty saved me from the continual horror of that bed!
 
But even a good bed can be hell if you have to stay in it due to illness.  Whether you have sprained your ankle, your body, or your brain. There you are; in bed. Writing reviews for Wal-Mart.



Wednesday, March 12, 2014

Journal Entry

There is a post needing editing worthy of putting out to the world but I need to just write. To document my health for those of you who are searching for answers like I often do on hard nights.

It is late. Actually, early in the morning. No sleep this night. I am grateful tho for a nice warm bed.
I have gone from my buck, my recliner, to the high maintenance bean bag that needs foofing each night, to the upstairs, then back to my bed.

This bed has held some serious memories. Added some to it yesterday. Who wants to be house bound? The picture above holds a scene from one of the years that I could get a garden in. Oh, how I wish that I had the energy to do a grand garden this year.

The good news is that I will have tulips. Yes, my friend helped me. It was hard. But we got them in.
I can not tell you how happy flowers make me. Planting them, watering and weeding, being amongst things that grow. Setting the water to make the grass green and lush.

It is camo colored right now. Taupe, dead grass colored matting in the front and back. I think I need to tell J. to grab a rake and "fluff" it so it can get growing into some spring greeness.
.
these thoughts are a good sign. Because they mean that I still have hope. Lots of things have changed in my world.

A friend told me today about a loved one being sick and unable to even get to the bathroom. Another friend has a close friend just diagnosed with cancer. So much we have to go through in life!

Today when I had pain J asked me exactly how it felt and then informed me it was not kidney failure.
He happens to be reading a lot in the library and that was one of the things he read. hum.

Another friend brought me a scarf she made that is scrunchy and cute. I can't wait to wear it. Which will most likely be to a Dr. appt. or run an errand.

So often I wonder what it would be like to have things be Normal again. Or maybe this Is normal.
Okay, for those who have Crohns this is the status- nothing is happening or turning around on Stelara.
It is still early in the game but that is what I am finding. And I still was having joint pain so we will see if I can turn that around.

The doctors are going to try a different cocktail of meds to see if we can stop the current flare.
One person I saw told me about a transplant. I asked what she meant. A transplant of a normal person's "good" fecal matter. Yeh, I know.

But you get desperate and will try anything to just stop whatever it is the body is doing and why it is attacking itself.

In the mean time- I have had friends visit or call and it has boosted my spirits. Stalwart people I have met and learn from have helped me pull myself away from the darkness that comes with disease and chronic problemos.

So badly I want to make a contribution more than I am. I have dreams where I am my normal, young self and it will be with friends from my younger days. They have been almost so real that I can't believe it when I am awake that it didn't happen. I almost want to call the person that was in the dream and tell them it was so good to see them!

I wonder if it is God's way of helping me keep up with them? Oh, well. Just a dream. Sleep is upon me now. Thank heaven.

Thursday, March 6, 2014

NO TRESPASSING! Address

Learning never ends. Kids remind us of that all the time with their forthright comments and questions. If you ever are needing an uplift, go to the kid snippets on you tube. I have chuckled in the middle of the night over something from one of them as I have battled a frozen joint or ten minute Charlie Horse.

Speaking of horses, one of my cowboy nefs made me laugh when I asked for his address- he ran to his Dad and asked: "DAD! What is our Trespassing Address???"

He needed it in order for a package for his birthday. Hope they let the mailman through in order to deliver the goods.