Porridge and Diapers

The alarm is set to go off in the next little while.

I have been up, sitting in my chair, Buck, and drinking Miralax. You have to start really early in the morning to get your meds in on time. But anyway. I have been bouncing from an article in a church magazine and a book called:

the smartest kids in the world
and how they got that way

The book has a rubix cube on it with stickers of some flags from around the world. The only thing that I have in common with the book is that I share the same first name as the author, Amanda Ripley, and I once had a cube which I never figured out.

The family room is needing some work. Several Nerf toys are littered about on the furniture along with two baseball mitts, and there are some Amazon boxes riddled with holes.

Proudly I notice that they are on the mark. J has hit the bulls eye. I'm wondering if this makes him smart.

He's had a pretty decent childhood, as childhood's go. I am not far enough into the book to find out if he qualifies as one of the smartest, or potentially smartest kids- BUT! I actually think that we made some tough choices this last year and it is paying off in the education department.

In the magazine I'm reading the author, Richard G. Scott said that he was confident in our future and that there would be advances in technology, physics, and...... medicine. That last one caught my attention.

Why? Because I sorta have had the attitude of our medical world, and my world, hitting a brick wall of sorts. End of the line. Not much to offer. And then I start reading about HOPE! And smart people who are just as ingenuitive as some of those who went before and could come up with advances that would help me and others.

I'd thrown in the towel! Obviously I am not one of the smartest kids! Or was giving up on the notion.

What does this have to do with Porridge and Diapers? Absolutely nothing. It was simply me recalling a saying my Grandma told me that her Dad said to her: "Save your breath to cool your own porridge."

I had mentioned this to Jaden at some point and loved the analogy but one day he came up with a saying that made me laugh. I was going through the mom questionairre before bed time.

Did you shower? Did you brush? Did you notice I put clean underwear in your drawer?

"Mom, how about you worry about your diaper and I will worry about mine."

It gave me pause. Then laugh. And it is easier and more to the point than the porridge analogy.

Oh, Wow. A Younger Face of Chronic Illness

It's in the a.m. and I am on the forum.

I've googled long term effects of :

 "x" drug

after "x" amount of allergic reactions

 multiplied by twenty years of immunosuppresants

plus biologics,

 

with a dash of mouse protein and gotten nothing.

So I modified my search

 and this is what I found. Diary of a Sick Girl.

One of the grandtots says: "oh, wow." when in wonder and amazement over things like a nicely stored collection of
DVDs
waiting to be unloaded onto the carpet.

I had an:

Oh, wow!
moment.

When I saw this young woman's blog on the Healing Well Website.

 

She has RA, IBD, LUPUS, and a host of other things.

this made me cry...

 

https://www.youtube.com/watch?v=C-_W68RL5as&feature=player_embedded

 

Aww, schucks. I hate to see people suffer. Especially being young.. It takes so much from you anyway. But when it hits you when you are young it takes innocence and hands it back.
But the taking of it is so sad to see.

However, she is very grown up about it!

And it couldn't have hit closer to the truth watching her go through a tough night. The cramping up of her hand is so true. Who thought about joints when you were young unless you were at the skating rink? Doing the hokey pokey?

With RA it grabs you by the ear and pulls your attention just what for about joints. But who wants to know that at a young age? It is about make-up, prom, tests, and school books.

When you get older it is, well, for older people. Not YOUNG people. Unless you get it young and then you feel like you can relate to older people and striking up a conversation about aspercreme with a geriatric isn't unrealistic.

It is with fondness that I discovered a cream that didn't smell like old folks home when I was 22, the age this young woman is now. There have been some break throughs in medicine. And some of the meds break you..... (cough, PREDNISONE, ahem.)

Sadly, I am at a pivotal point in the game. That I wouldn't video but should. It's the part where prednisone goes on tooooooooooooooo long. I don't know if I should be holding anyone responsibile for this or my own illness.

But it has. not. been. pretty.

Who wants to put on weight in the most lopsided areas? Like your neck and torse. Sure it goes other places but you might as well fall into the non existent bum category with the off centeredness of the cell placement.

I used to have a chin.....

okay, okay. I will stop there. I don't want a young woman to stumble across my blog and lose hope for what could be in her lifetime if she has some immune disorders and is ordered by a Dr. to take prednisone, she sees my situation, and doesn't take the life saving med.

Sigh.

Who's ready for the Olympics? Sign me up.  I wish I had Dish.

Bear Grills vs. well, Bear Grylls (With Crohn's Disease, etc.)

Raw writing during early morning....



It may have a Mark Twainesk origin...

When I first heard about the cheeky UK Survival enthusiast I had no idea he was just the mouth full I typed.

J. would tell me about this show Man vs. Wild and then somewhere in it I would hear Bear Grills and imagined a Grizzly Bear as the logo of the show with gold grills on his fangs.





Not kidding.

So over the break I finally got watching episodes with J. about this young man, who is now older, by the name of Bear. Last name, Grylls.

Me: Hey! I thought Bear Grills was a brand.




J: "It is."


Me: I mean a person.


is."

J: "He is!" and "He does! [have his own brand of.... stuff}


Me: I'm lost. (I needed Bear Grylls right then to help me get my bearings and direction!)

I then learned that Bear Grylls, the person, was finishing up his time in the army when he broke his back from a parachute landing, then at 23 he climbed Mt. Everest. Geez, did he have to make me look that bad? But I found out from his bio that he grew up mountaineering and earned two black belts in martial arts under his father's tutilage and where they lived; a remote area.

No wonder he bounced back quickly and had time to think of a name brand for his survival stuff.

J: "His brand of cool survival gear is 'Gerber'."

Me: Wow. (Does he know that is a baby food over here in the U.S.? Maybe he says: "Grr-Bear" when pronoucning it.

To be honest, all the survival hallaballoo of him climbing up freezing cold water falls in Alaska, scampering over moss covered rocks was exciting and a highlight of J and I's vacation. Along with lounging on the bean bag and watching movies, and Kid Snippets on Youtube. And reading. And talking. And looking at the lights..... Sigh.




Anyway, during those moments of watching Net Flix episodes of Man vs. Wild,  I logged away some of his tips. The cogs in my brain got me wanting to write him a letter on survival and how he could apply it to younger boys. And older boys.



One of his books, or one written about him, said he climbed Everest on his own accord. Paraphrasing of course. I wanted to say that we all came to earth on our own accord and, while amazing, I want

 him to do an episode on surviving with disease, infections, his body attacking itself and trying to stay hydrated when you are on your own in the wild world of working out your salvation. Or something like that.

 Or even doing this in the confines of your bed or house whilst on prednisone.



After watching Will Ferrell do a two day jaunt with Bear and then decide on the side of a cliff during the snowfall that he had to go... really go. As in the number 2 version, and Will said:

"This is more like Man vs. Bowels," I was hooked.

I still don't know how they got Will's bowel movement to take place without falling to the bottom of a sheer cliff. But hearing him call out: "Mommy!" as he climbed and held onto a ladder dangling


from a Swedish driven helicopter; I could relate.. relate.
Above is Will and Bear on a very steep slope with limited time to reach the point where they build a fire and let the smoke tell the heli to pick them up.
Will was amazingly insightful on one of the breaks they took. He said that the stress and bustle of Hollywood is exciting but just sitting there on a mountain side as snow fell on him it was peaceful.

That is the difference between a lot of us- peaceful moments. And not doing crazy bravado stuff for money on TV. Like eating the head of a deer for dinner the night before on this episode.

Will still managed to be funny at points which made me laugh and you knew that they were at least not REALLY stuck in the middle of no where if cameras were all around.





In the end, Discovery channel had to cancel the show.

That was a downer because I had another show idea:

 Insert English accent:

 "Man vs. No Woman in the Kitchen"

His new episodes are called: Worse Case Scenario.

Can you think of anything worse? Me neither.

I have seen first hand men who have been through scouts, war, and a number of survival classes come to their knees when the "One who Cooks dinner, lunch and breakfast" is not around.

Bear would come upon cupboards full of weird things like baking powder, flour, and salt.
Not knowing what to do with these exotic things he would open a pantry with canned soup; open a drawer with pots and pans in it along with some identical thing but it reads: Pampered Chef.

He grabs the microwave only Pampered Chef pot and tries to re-heat tomato soup from the fridge.
The smell of melting plastic permeates the room and ruins the missing woman's favorite pot for steaming vegetables in a hurry.

It could teach men, the world over, how to not open the freezer and instead of thawing hamburger for a meal, eat crystallized  ice cream from the last birthday party.

Bear could add to his personal line of survival gear, Gerber, placing his signature to pots and pans, can openers, and kitchen ware. Which would make the young survivalist playing/pretending the excitement of getting his name on a pocketknife or something.

This would be a huge hit with the women absent who would be present and proud of their men for surviving.

How You Know it is 2014

 

 

 

1.The kids are back in school.

(a.) but they still hold indoor recess cause it's cold in Idaho and apparently the midwest...

(b.) they -the midwest- are getting 60 below! Cripes! Idaho is SO sorry! We are sending blankets, mittens, sorels and firewood, and my blog!)

 

2. Instead of a normal tune, I can't get the sound of a kid's voice singing a Josh Groban song.

(Kid Snippets on Youtube was introduced to me by J. over the holiday.)

(Even Josh Groban knew about the Utah based short snippet acts that the Utahn Roberts Brothers make of their kids' voices and their acting it out. Wildly hilarious and addicting)

 

3. The WSJ, which many of you know I read back to front, back in the day and now I just skim the front page, has articles about this being the year of health care.

 

4. I am too busy with health care to read.

 

5. Josh Groban is IN one of the kid snippets and some upcoming ones...

and you thought you knew what Josh Groban did.

 

6. You realize you didn't break out Josh Groban's Christmas CD over the Holidays cause you weren't handwashing dishes now that you have a Dishwasher!!

 

7. "Run away, Run away, " (sung by a kid that has that raspy kinda voice and is really cute)

 

8. Changing the Humidifier Water Daily and Cleaning It- is getting REALLY old.

 

9. You realize you weren't the only one on your street to leave up the Wreath.

 

10. You are reading the fine print side effects of Remicade now that you are off it.

 

11. Kids are shocked to find that homework wasn't just a nightmare.

 

12. Kids are just as excited to open a drawer with clean socks and under clothing, as

Raplhie was when he got his Red Rider BB Gun

on A Christmas Story.

 

13. Padre and I are no longer companions over a break.

 

How to Tell Christmas Vacation is Over

1. You find yourself eating a sandwich minus everything up to the bread board.

2. Eating up to the bread board by yourself on a stool.

3. Instead of dirtying a paper plate or reaching for one, you settle for a napkin.

4. The sturdy Amazon boxes are not so cool anymore.

5. You have watched Elf more than twice with J.

6. You fall asleep after a paragraph of reading a book you thought you'd finish over the break.

7. You gather, collapse, and take out the boxes in your jammies.

8. Padre decides to make another errand and locks the house up in the time you took to walk outside to empty the trash. In your jammies.


9. There is finally a path cleared to the tread mill.

10. The Wreath is Still Hanging on the Door

11. It went too Fast

12. Conversation on the treadmill with J. (he is on eliptical)

Me: This was the best Christmas yet.

J: It isn't over.

ME: Tomorrow is Sunday

J: It's over.

Best Yet and The Motto We Wanna Say n Do

*******After writing this over the course of a few days I have permanently decided to put down our motto- what I have been saying to J. in O 13, and what I will continue to say to myself and him.

DO IT.
DO IT RIGHT
DO IT RIGHT NOW.

Of course we modify the motto. J. said Mow Toe and I laughed the other day when he was looking for the word moto or logo. Anyway, this saying seems Marine Core tough. It is. But I've learned that it is like play dough kept in the fridge, you can mold it around a situation.

Enjoy... and Best this New Year! Keep ideas, inspiration, thoughts, and calls coming!
Thanks to all who read this, and me, and J. It is source of contentment for me to come to my blog. I have allowed it to be my Journal outloud in the hopes of helping someone.

Even if it is just me!

Below is one of my yarns. Enjoy. Pictures later. When the time and health permit,

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


The flu knocked down family parties last night like the power lines got bowled over by the Idaho cold.
Last year, I mean night, J. and I got to ring in the new year making toast with Apple Cider with the Padres.  The news came on quickly after we toasted- using Mom's fine china black goblets and Dad using his Rush Limbaugh glasses that keep things cold or hot.

While healthy people played Monopoly and laughed we watched the weatherwoman tell that Malad Pass had an earth quake! Mild one but it added to the mayhem happening on the hill last night.
Lots of snow and blowing wind for anyone who wanted to cross the pass in hazardous conditions!

So I lived through what the end of the year threw at me. I got to spend some quality time with my Grandma, catch a bug going around, knock it out with some anti-biotics, so I was healthy enough for Remicade to try and kill me!

That day was the funnest one of last month's and I have to hand it to the nurse who heard me wheezing (they had forgot to hook me up to any monitors- minor oversight, really.) "Nurse."
(too bad there isn't a squished font that could protray struggling and suffocating. It would paint a better picture.

Since I couldn't and can't paint, I took a picture instead to archive the moment. And send to folks sick in other states.

Heck, did I mention one of my friends called and informed me that their Family party got cancelled too? They have 9 kids that are all married and have kids so it is a big deal and amps up the chances of multiple people being sick and warranting a cancelling of celebrating together.

Where was I? Oh, the lack of oxygen getting to my head. I turned bright red, felt hot. And it looks like even with Gargantuan doses of prednisone, my body has outsmarted Remicade on its third try!

Ha!

My immune system might be out of whack but it sure can put a stop to things!

Like today. My body was minding its own business when suddenly I was feeling hot.
Despite all the secrets I had like staying away from sick folks, covering coughs, and washing hands; I got a fever.

My face was screaming again and looked like it did Friday but for other reasons. I could breath this time and that was a huge plus. With a striped hat, some outdated Old Navy scarf from a clearance rack, and doubled up in Padre's work Polos he never wears- I sweat out a nice fever on the
first day of the year!

J., mildy looked on as he did target practice with the boxes Amazon sent us for Christmas.
Possibly he wondered if he was completely nursed back to health from the bug strain he is packing around like a horse packs around stuff for their owners. (I am afraid to say anything like packing around beefed jerky, or Cast Irons for fear that we'd be viewed as not be careful.

I can assure I was only pinged once by a pellet and it barely bruised me through the blankets while I sat on Buck the Recliner.

While J. was gone I was able to do things like I mentioned above- see my grandmother and sit in a recliner next to her, and help her in any way possible. We also had a contrived concert involving someone with tons more talent than me, come and play the piano, for over an hour, right next to Grandma.

Anything she thought of or handed him by way of sheet music, he played. And played well
. It was hard not to get choked up. Here we were in her living room that I know so well, a concert pianist playing the keys on a piano that happened to be tuned just two weeks prior.

Miracle. The fact she made it through one tough spot surprised me. Parkinson's disease is very complicated and I didn't know that it would affect the digestive system by way of the muscles.
And like a lot of folks, I figured your digestive system stopped at  your stomach when I thought of her.

Duh. It, meaning Parkinson's Disease climbs up the esophagaus, clenches onto the back of the throat and makes swallowing, one day, impossible. So then what? No wonder the mouth was really affected and sensitive.

When you hear that she can eat whatever she wants or not to force someone to eat because they might be choking on it- it is deflating. The whole premise of keeping someone hydrated and "pushing fluids" is obsolete! (I hate that saying btw. Push Fluids. It's like what they do to prisoners in 'Boober Bay' when water boarding someone. "Hey, remember to push fluids."

Check.

So what do you do? Sit there and listen to a pianist. And take note that she is getting the chills and wonder if it is from going out to the Dr. or it's what everyone in the nation is passing around.

Kiss her head and go home in the snow. With Padre. I got partnered up with him while J. was gone and it was a lot of fun. Later that night I started to cry. I picked up a real phone and called my Gpa's real phone.

I cried to him.

He promised me that I could come over any time I wanted, day or night. He'd get in the car and come pick me up. What he doesn't know was the couple days with Grandma were the only window of health I have had in a long time.

So I just write her letters.

How did I start on that? Oh, this is a 'Best of' type post! And her life definitely is a best of.
We shared some smiles, oh Parkinson's takes those too eventually. And I got to rub her feet for her which helps the stress. Ya know?

I saw a brother that works in the oil fields. That was a treat. Honestly. That makes me emotional too.

On Christmas Eve I got to spread the magic with my nieces and nephews, who sadly live in distant places now. Which is hard when you are around little nuggets on a regular basis, and then it changes!
You worry! Even if it isn't your kid! And they are so cute! So, like J., we pray they STAY cute!

I learned a lot from researching. Like about electricity after getting shocked on Christmas.
Saved our home from a potential- maybe- house fire! How cool and inexpensive was that mishap?

Right!

When J. came home and I shared my knowledge from our body being a resistor to ear wax actually having anti-biotic purposes- he asked me where I had been. I told him. Then he said:

"I thought you'd gone to an aquarium or something." This was probably because I told him whales have ear wax.

He only left a couple important things like his Utes jersey and the book he needed to read at his Grandma's in another state.

Santa came here and I left it all right in the same place until he could come and enjoy opening it with me! I am so blessed. Not only did I not leave my peppermint chapstick at the Infusion Center at Eastern Idaho Regional Med. Center, I had a great Christmas.

And now today, due to the fever, I got to just sit and watch It's a Wonderful Life. Again.
While Padre looked for the tail end of the wire that shocked me. It apparently wasn't grounded, had been sawed into by whoever put in the plate and the insulation around it was cracked and crumbling in his hands. He said something about it being done half way and spliced incorrectly and a bunch of other electrical terms that went over my head.

The first day of the new year. It actually just feels the same. But we have made some modifyable goals.

Just got a text basketball starts tomorrow. oh, boy.