Wednesday, October 29, 2014

Sack Lunch

* This was Sunday morning......

I just made one. A Sack Lunch

Not for me. Jaden.
Since I was able to walk upstairs and who knows if I could later on, I made it. Two Almond Butter and J's. Yeh, he's allergic. Thank you whoever invented Almond butter. He hated it at first and now he loves it. Finding protein your kid will eat as a kid is hard enough. Add an allergy and, well,
Who  is allergic to peanut butter? Apparently that J. kid.
I'd never even heard of such a thing growing up. Unless they were and nobody knew it.
So this weekend was rough. Sunday was horrible. Realized that this taper off prednisone needs some sort of test like diabetics do with their blood. So if I get an infection and need a stress dose of prednisone, or if I forget to take the 1mg tabs when I get to the complicated halvseys of tapering; my blood would just tell me the amount to take.
Or it would be some app on the cell phone and Siri would say: "Amanda take da da da amount."
My friend tried to "shhsh" Siri late one night so it didn't wake his wife and I guess Siri doesn't know that command yet.
that's funny.
what isn't funny is this set back. Seriously ON my BACK?
Could not MOVE. Well, without much consternation.
Once a GI Dr. told me if I didn't taper off prednisone I wouldn't be able to lift my head off the pillow.
I was in the hospital with a flare and I didn't know prednisone yet and so I shrugged my shoulders and thought: "hm."
Didn't think much else about not being able to lift my head off the pillow until yesterday.
Literally I laid there on my back wondering why on earth.... and
"Yup, he was right. Man, I hate prednisone. "
Then rambled "This too shall pass." for some time and
That's when I did some thinking and figuring and sure enough, I was off on my morning counting and as a result was tapered too much.
Goll DARN!
It took a few hours til it kicked in and I could lift my head off the pillow along with my legs.Which I let take me to the loo.
Speaking of legs. J. came in last night and we had family home evening (watched a snippet of a  flick, and some Kid Snippets and called it FHE. while my head was pinned to the pillow.
 Just in case Monday night got hectic, wait, football is over so we actually  might have time tonight. Anyway, he ends up pillow chatting with me while I prop myself up on the pillows so the acid in my body doesn't burn my esophagus AND my sinuses in the night,  we say prayers. , right in my way!
So the Norwegian best seller Christmas book that is THE 2014 book, is adorable.
I can just sit and stare at the pictures taken by Anja's father. I have had it out upstairs and it has gotten read to some of the grandkids already.
They are enthralled.

I love stumbling upon a great book. Send some my way if you get the time.
I will have J. help take some pics and we will upload them.

Oh, I saw a movie that was surprisingly good. It is called
A Better Life.

The part that struck me was when a young teen and his dad are at a rodeo and the kid says:
"Look at all these poor people and their kids. Why do they have them?"

The hardworking, can't buy a break, Dad is dumbstruck. He can't answer but simply tells the boy to "not say that."

Then at a poignant moment, when the chance that they will be separated for a time, he tells him:
"I loved your mother. We got married. We came north. People change. We had you.
I had you for me. For a reason to live."

Quite touching.

WEll, I might eat that sack lunch. J. told me he signed up for hot on Friday.

wulp, you won't believe what happened.
Got rear ended. While being dropped off to do some blood work.
How random can things get, I ask you, Reader?

Could have done without the additional injury. 
A story/post for another day when I can try and be funny.

Monday, October 27, 2014

Tapering and Disease Progression= Long Day


(At the very end of the 1st Entyvio Infusion, the vein blew. Thankfully all of the med got in before it happened. But it blew up all along the forearm, back of my arm and under my arm pit.)

It's been a day. A FULL 20 hour pro-patient work day. (i.e. I had new probs crop up, had  to get to appt.s along with deal with disease, and hang out with Padre.
Why? Cause he was my ride.

My day started early, on the mornin' shift, when a massive pain gripped my knee.  It was Not like a charlie horse pain, or a

"I fell asleep on my arm and woke to find myself hitting it against the wall to wake it up" pain- 

but a 

BOLT up in Bed

and grab your knee pain. Oh, don't forget to add some writhing around in there for better imagery.

How did that happen?

Have you ever been skiiing, lost all control, and had your legs somehow wrap around each other like a twizzler? The " Twizzle" might be okay if it wern't for the edge of your ski not catching the middle of twizzing and you end up suddenly gripped in the mountain's jaws.

 Actually,  now that I think about it, the ankles get twisted up too. Anyway, you get my drift. Twisting with skiis on = pain. No, thanks!

So I sat up in bed in horror, because I hadn't been anywhere near a ski hill or a Twizzle. I did a wriggle jig, slid out of bed, limp danced around, and then tried to figure out what on earth was happening. And what on earth could stop it?

 Random swelling and joint freezing is

part of the Crohns package.

I have no idea why. So even though it was dark, and I couldn't see the Twizzle injury, I wasn't in the dark as far as knowing it was

 "just Crohns"
 or muscles reacting to being on prednisone for so long, then coming off of it. Or the result of a biologic medicine I took 8 years ago in conjunction with 6mp (another scary med combo). I am simply blazing a trail and everything that happens most likely will end up being a statistic on the little pamplets of paper that will come with the medicine. Hopefully it won't be a scenario that is lunped in the really bad cautionary side effects.

I did turn the light on and examined it. The knee was red and swollen. Couldn't be a bee sting.  I pulled out the ice packs and wrapped them around my knee and waited. And debated. Was it serious? Like one of those blood clot things that could dislodge, infiltrate your lungs, and cause death. So maybe you ought to get checked out?

Or just wait it out?

Above the knee cap and behind the knee was in excruciating pain. I made some assesments, passed some time, and then chose to be brave. And wait 'til the exact moment the clock turned 8 and
call my G.P.

This is when the rest of the Idaho Falls' invalids dispatch their G.P. and we bottle necked the phone lines making it so no one can get through.

*Did I mention that I am listening to Josh Groban Christmas music while I type? It's really calming. Remember I'd listen to him while I did the dishes? Back when we hand washed them here at the homestead and it would take, like, 3 hours to clean up after a big family meal. Or small meal. Any meal. 3 hours perched on the black stool. I liked looking outside as I did it. My time to meditate. unless the AC was up and then I just meditated while looking at the gray grill.

So right now I am in my room. Josh is singing and I am finally home after a verrrrryyyyy loooonnng day of appts. and being paired with Padre to get to the appts. and also run some errands on his list.

I have blogged about this kind of scenario too. And you Readers know that running errands with Padre could land ya in the hospital if you aren't properly prepared.  Thankfully, despite his dog determid-ness and my sickness, things miraculously fell into place. From the timing of appts. to ultra sounds (that possible blood clot that could dislodge and go to the lungs had to be ruled out, so one more thing ), to even needing to "hold it" until we dashed home; it all seemed to work out.

It's a good thing it was a warm day because it made running errands with him doable. I was able to sit in the warmth of the truck cab; the sun hitting my face and just "be."

*Right now, while I write, I am drinking chalk. Well, not really chalk but it might as well be. It coats my sore throat. Which is growing a cashmere sweater on the tongue and down the esophagus. Thrush is super annoying. And I forget that sore throat/thrush is a result of being on prednisone and it lowering your immune system. And then that it requires something to help you get better or you feel worse. Like an antibiotic or something.

I just remember having it over the 4th of July, all the Dr.s being on vacation and me eating ice chips for two days straight before they stuck a tube down my throat and announced: "You have Trush in you Esophagus!" And assured Padre it easily could be cleared up in two weeks. Took four. And it wasn't easy. It hurt.

Back to being with Padre all day while I worked my job....

I always give him a hard time- joke about all his mugs and their straws, his sense of urgency to get things done. Or multi-task. I complain if he gets me to an appt. right on the dot without factoring in me trying to get to the 4th floor of a building or something.

Today he grabbed some stuff from Wal-Mart enroute to an appt.  When he came back he had a whole stack of ice trays. I guess he is preparing for the Second Coming and making sure we have enough ice cubes on hand for all the folks who have mugs and like Ice Water.

Anyway, I prodded him about already having a freezer full of ice trays.- he said something about how they stacked. So I took it further and I had to also lask him why he would buy more toilet paper simply because I organized the bathroom and it freed up counter space. Which he filled. With toilet paper.

 For some reason he doesn't find me funny when we are pressed for time and what not.

For some reason, despite the major things going on, I felt pretty calm. The sun was shining yesterday.
Let me repeat that- the sun was SHINING. And it was WARM outside. Here. In Idaho.  No wind. The trees still have (well had them yesterday) beautiful golden leaves hanging on them. (today it is blowing and the sun left behind some clouds just in the last couple hours.

Yup. I got to just sit there in the truck and be carted all over I.F. J. took his last nice bike ride of the season for two hours or something (how would that be? I can't go two minutes.)

The sun worked its magic on everybody. It shimmered off the Snake River as we drove past it, gleamed through leaves still on trees, and made me glad. Right now, as I type a gust of wind picked up outside and is shaking the trees and playing the wind chimes. Guess, all the leaves will be found on the ground in the a.m.

Which is fine. I am already playing Christmas music, writing down what I want for Christmas and making home made gifts. People like me keep Craft stores in business. I'm sure what I am making will be on the display shelves at D.I. someday but at least they are helping me get through some nights of ligaments and tendon malfunctioning. Which I found isn't as easy to replace or fix....

Which made the day feel surreal. Isn't much you can do when things are on a progression toward something; you can't turn it back. Permanent damage is part of the game now. Instead of googling or reading Crohns forums, I am now reading about "osteoarthritis." And looking at their forums.
Once again, it is up there with the geriatric crowd.

The last little while has seemed like a pivot period in my life.  It isn't really huge, but big enough to change our lives; the new normal.

When Padre and I talked with a family friend on our daddy/daughter doctor day, the person reminded me that his mom has been in a wheelchair most of her life. To be honest, I was so tired, that I had forgotent this tid bit and when he reminded me, I was so glad! Not that she is in a wheelchair, but glad to talk to someone about it.

Not getting into a wheelchair anytime soon. But it is nice to talk to others and get tips on how to transition from walking normal to not walking normal so much. Wow. I am really pulling out all the stops on writing ability here.... I can't even think of the words on the tip of my tongue so you guys are just gonna get what ya get cause it's all I've got.

So as I am laying here, listening to Josh, ice on my leg and one ankle braced up to stretch the fasciitis- I am looking at a picture of Christensen's. It is of the Lepers that Christ healed. One has stopped and is looking back. The photo is in James' book and I open to different pictures, cause I like so many, and leave it on a page that I want to focus on.

I did tear one outta the book of Lehi- a prophet from the Book of Mormon, and I that framed. I love the demeanor of each person's body. The hesitation of the one Leper stopping to look back- I wonder to myself if I will be healed in such a manner? Or if I have by simply feeling the peace that I feel and still being in "Leper State", or what.

Then Lehi reminds me of someone holding a newborn baby and smelling their cheeks or the top of its head. Safeguarding the little one. Lately that has represented the calming moments that J. and I have had while reading. From the scriptures and other books, but mainly the scriptures.

It's as if a small sacrid window of time is alloted to us and we read and learn. And feel peace. That
All is Well. yeh, it's hard. But it's okay. I am not afraid during those moments. yes, I am feeling a sense of pivoting to a new place in our lives but it is a progression for both of us. Not just of this disease, but of learning and understanding. I feel I am gaining some knowledge and empathy.

Navigating life is hard enough under good times, but when every moment counts- boy, I sure am glad for some help. Especially when I have to make decisions that are large. And small. And maximize my moments with J. There is so much to teach him.... and tell him! And learn from him. So I like when things don't feel random or hectic. But, rather, they have a purpose. And with each moment we progress in our lives, we learn and climb up to another rung of life's ladder.
For some reason I am recalling one of the kids from my baseball team a few years back that struggled with the very thing of learning- With out fail he would show up to practice without his shoes tied. I think he was going into third grade or second, and he was still dealing with this basic step; tying his shoes.

For the record, I couldn't wait for Jaden to learn to tie his shoes. Or buckle his seat. Or pump himself on the swing.  It wasn't easy for him to learn to tie his shoes.  We picked up on a trick from a neighbor to use a board with holes in it and practice lacing it up.

But this boy was behind in a lot of things but it was understandable. He had so much on his plate and not very many around to help. A parent doing their best to bring home the bacon.
They seemed to always be in a hurry. So there I would be with the wind whipping me and small dust bowls swirling around us as I tried to undo several knots (failed attempts?) and tightened his shoes.
And he'd be hungry. Most of the kids would forget their water bottles so I would bring water. And cups. Oh, and it wasn't just poor kids. Just ALL of them at that age are really not into taking care of water bottles.

Heck, it wasn't just at practice that I'd end up tying his shoes. I would take a job sub teaching his class and there he was, tripping over his laces as he came into class. Once again, I'd bend over and tie his laces. On a rare occassion he'd show up with mis-matched shoes. ?

yeh, question mark. But that isn't the point. I guess I am just glad I was there to help him tie the shoes. And it broke my heart to tell him I couldn't be his coach anymore. J. was moving up in skill level. And I was not well enough to justify puttting energy toward being a coach anymore.

nor do I have energy to upload this before I post it.
Minor set back over the weekend. I hate set backs.


Thursday, October 23, 2014

On Fire, Prednisone Forecast, & I talk On and On...


What is the Zombie Apocalypse this guide is talking about?? We'll talk camps and fires in a bit.

(this post should be three. but I am too tired to edit. so here it all is. A rough draft of 3 posts. pretend you are an English teacher and have to correct it. )

Prednisone Forecast First:

1. Forgot Email Password- Can't recall what it is to save my life. I feel for those with Alzheimer's because the frustration of having pred brain flip numbers or cause mild dyslexia is awful.
(as I have gone back to read some of my posts, I have seen where my brain has 'flipped' a word I KNEW how to spell. Or the slow action of pulling off the shift key when making an uppercase letter. The SECOND letter is also uppercase. Things like this is what plagues me on prednisone. I could spell check it or fix it but it helps me to see where I am at during my time on prednisone, etc.

2. Forgot Where I put Email Password (a feeling akin to misplacing your keys...) Anotheprednisone side effect; scatter brained and all over the board: ADD/ADHD

3. Wake up in middle of night- no matter what.

Usually the screaming foot fasciitis, nausea, or the Crohns in my esophagus is the uncomfortable culprit, with Prednisone and its side effects as a close side kick! (i.e. head ache, sore throat, sinus problems, eye pressure, so on and so forth.)

Last night. Or was it morning? ---

Mom, enters my bedroom at 5 -ish and finds me on my dishevled bed blogging, simultaneously  wrapping a gift with butcher paper that I decorated in the night using Sharpies, and there is yarn mixed into all of this. I am atop my peach polyester bed spread.... Crazy how one day you have a  normal quilt/blanket and the next thing you know you are sporting a polyester one likely seen in a Great, great Aunt's bedroom. Anwyay, back to mom coming down to Santa's big helper's room....

 "What ya doin?" she asked  leaning into the doorframe in her jammies.

"I am UP. buh~"

I moaned, tossed the rather cute wrapped gift, if I say so myself, onto the floor; laid back on my pillows and asked her:

"What you doing?"

Mom: "I'm up." I nodded.

Totally understand insomnia or med induced early morning waking.

Or early morning waking to race to the bathroom. (can anyone say "Prednisone just masks flares?"

Or just getting up early. Unless you need to get up early and stay up- then you can't get up. Or fall asleep a few minutes before the alarm and feel the weight of the world for awhile..

 Did I mention on the blog that I found a Birch Tree Branch twig for my annual Christmas twig? - oh,  wait, I had a branch once,

(aww... here is the original twig...)

that eventually I threw out after it dwindled in my room for a few months, which hardly makes it annual.  hmm. Might have to make it tradition if health allows or prednisone propels!

*Another side note: As I brought some  "larger" twigs, okay, so they are more like branches, inside the house in order to decorate downstairs for the holidays,

Padre gave me a questioning look and asked:

 "Where are you taking those?" & "I don't think you'll be able to get those downstairs..." he was almost right.

- Getting them onto the landing and then down the stairs was pretty hard. It'll be cute once I get some twinkly lights on them! Okay, back to the post's original thoughts!

I wish I could say the title of this post had something to do with me being unstoppable at something or what I was doing qualified as work and sent regular checks to me due to the ferocity at which I can do a few things. Like with yarn. And I got paid millions of dollars to do just what I do as a stay-at-home, prefessional patient, prednisone taking pioneer of meds for the world....

Something about bringing home a paycheck makes ya feel good. I watch J. do just that- work and collect money for that work and it makes me jealous. There is no better feeling than rolling up your sleeves, setting your pace at something, and then reaping the rewards.

First off the top is Tithe- then savings. And then saving up for something special. Waiting and working so that you can walk into that store and buy that pair of roller skates. Which I wore minus a helmet or pillow to protect my poor backbone. As a kid, the Percival's driveway seemed so steep! But their concrete pad for the trailer was super smooth and my gummy wheeled skates rolled over the crack so seemlessly!

Let's get back to the yarn! Because, after being striped of my former title of being 'able' to do "hard work", things like yarn are one of my few options. Along with writing in my journal, letter writing, and eventually bringing you, Reader, into the loop.

However, even using yarn is a treacherous thing and causing some bruising. Repetitive work happens to also crunch weak veins. ???? Like writing or typing.  Massively annoying. My P.T. once told me to

"Stop doing whatever it is that is causing your veins to bust."

Well, when he put it that way it meant that I had to stop myself from doing laundry, running errands, and walking/lifting/ doing physical therapy. Why? I was riddled with broken, what he called, "hemorraghed veins."
My whole body had these bruises. Due to an extra amount of prednisone, that covered or masked my real state, I was on the ball doing things.

He told me I could come back to therapy but wanted me to have a clear expectation of the situaiton; I was worse than when I'd walked in. Not by virtue of therapy, necessarily. I had fallen a couple times and had the concussions.
But the electrodes and sound waves done on my muscles would wipe me out for a few days afterward. Obviously, they stimulated the muscle and that stimulated my faulty immune system.

For the time being, his advice was to "sit in my adirondack chair next to my garden this last summer."
So I did. And that is why I only had two or three sunflowers crop up. And I struggled to get flowers in the ground and keep them watered. And I decided I better just be a rock gardener from now on.

Personal morale, and feeling of worth does tend to diminish if you are retired before retirement age. And the ramifications of that seem a little daunting.

 Knitting hardly seems to amount of 'over doing it' but there ya go. I know I said this post was a Prednisone forecast and this whole yarn deal and adirondack chairs is part of it.

oh, by the way, as I edit this Thursday morning, I have a new taper in effect. 1 mg. drops every THREE WEEKS. Sounds like a much slower, much more realistic taper. Especially after finding out my adrenals are snoozin' like Snow White.

(for those who are new to this blog/post, or whatever; I don't knit. I just wrap it around wreaths and letters when I get up in the night or need to keep my hands busy during the day.)

Right now I am doing some adding and subtracting from this post because, like clock work, I am up at 3-ish. And it is so hard not to get discouraged.
My feet are really making me wonder.... I am icing them and then heating and stretching them. Then back to ice for pain relief. No smiley face here, yet.
So I come here, to my blog, working through the heartache of seemingly lost dreams! And the pain shooting from my feet, ankle, knee, calves. Maybe some  Vicks being rubbed into bruises and aching muscles along with Epsom salts will cheer me up. I am wearing my boot to straighten out the muscles that get taut from injury and effects of prednisone on the ligaments, tendons, and so on.


 So on the subject of fire, it [fire] actually has to do with a symptom (s)of the biggest, seemingly most important taper, off of prednisone, in my life. One that seems to hold be a crescendo in my life . Or at least be the reason why I am making homemade Christmas wrapping paper in the middle of the night;
Age might have to do with it.

A friend asked me or said: "Well, at least you have gone through it before." Well, sorta. Not at this age. Not with all the months/years being on it and not with an 11 year old. And on and on. And not after developiong Cushings Syndrome. Which is just a side effect of long term pred use. Not a tumor on the glands. But who cares? When it means the muscle melted and I went from wasting to a waist that caused me to split every which way. I look like Sally from The Nightmare Before Christmas with all her stitches.

Actually, fire is a good analogy of what I am able to do here, with you, Readers. Gather you around my conversation campfire. Who doesn't like to circle round crackling firewood out in God's beautiful countryside and listen to campfire songs and stories? Shrugging your hands into a hoodie sweatshirt pocket and perching your once bony bum on a log?

Remember camping as a kid? Or as an adult if you still can do that and don't mind making one and worrying if flickers of flame might land on your trailer. (padre) And maybe your bum is still bony and it is uncomfy to perch on the log but the comraderie is pleasant enough to not care about discomforts of logs or trying to squish into a place by sitting on the point of a pointy rock.

Sorry, Readers, I am gleening experiences I have had in the past around campfires. Especially of ones up in the Tetons.

We have a fire pit in the back yard and now the Campfire is really close. Like blogging, talking with you all as I report my Refiner's Fire makes for an easier and more accesible setting.  Talking about it, and how I feel helps. And it

another fire analogy or symptom is how I actually FEEL inside:

On FIRE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Is it Crohns and the immune system attacking, prednisone, or prednisone withdrawal? Cause my feet hurt..... REALLY BAD. Symptom of Fasciitis?
Someone take a memo and ask my Foot Dr. or Foot Surgeon. I am too busy.

Remember on Elf when Will Ferrel decorates the toy store where he is hired? Getting a stress dose of prednisone in the ER is called prednisolone. And when you get that you feel like you were healed by some sort of Voo-doo magic. Cause one minute you can't talk or think and the next you are planning out Thanksgiving and Christmas from you hospital bed.

 Except tonight, now that my body took what it needed from the stress dose, got some extra that kept it up for two days with little sleep and then tried to taper cause it is a toxic med,  I don't really have the energy. Why? Maybe because......

Monday I got the flu shot and had to run an errand after not even being out of the house over the weekend. Let alone out of the vicinity of a chair or bed. But Dr. appts. have to be made. For me and J. Life goes on.... and requires you to show up.

Wed.,  after 3 hours of needed sleep, I wanted to talk to Padre about something so I got dressed. It wore me right out. I couldn't really talk about what I needed to talk about. I had to go back to bed.

It Confuddled Padre as to why I couldn't come run an errand with him but the night before at around 1 a. m. I was able to talk to him. While wrapping yarn around some cardboard in order to make a pom pom. It made him sad that I couldn't give him a nice foot rub while talking to him and mom. I showed him the bruises on my wrists and up my arm from just that day's efforts walking with a cane.

It still doesn't sink in for people how hard it is to say: "I can't."

Even emotional energy taps out the reserve of cortisol my body has alloted to it.

The day I  tried to get up and talk with Padre, I had gotten a text from him about an obituary in the newspaper. I knew the person. I wanted to be there for my friend. It broke my heart to hear the news.

The funeral was in half an hour. I tried to get up and get ready for it. Pulled a nice shirt on (glad I'd done my make-up) but Once I started getting into church clothes I could feel my body say: "there is not much left here for the day and you have J. to take care of after school. He has a football game. "  A crucial choice lay ahead of me: 'Go, and chance overburdening the amount of adrenaline for the day, or stay home and rest like my body needed. Desperately. I sat on the edge of my bed with skirt in hand and let the tears come.

First for my friend and her family. Then for the situation. I understood a little bit of the struggle the person might have had in her life as a mother. I understood her trying to be there for her kids when she had health hardships.  We don't/didn't share the same life experiences, but by virtue of her life being shortened drastically, I knew that it had not been easy on her body.

* just talked to a friend. She is sick. I, of course, can't help her. I wish I could. She got the flu shot too and it has knocked her on her feet. She has some dinner arrangments she can't cancel. So she has to push through.

We kinda talked about being the 'Party Pooper.' Just today I had to have another one of "those talks" with J. even. I had set the expectation of what he wanted to do, had to do, and what may happen with my body. But that I would do my best.

I came up short. It frustrated him. It made me feel bad to let him down. Of course I wanted to be able to do such and such. But I could only meet him so far. Like with my friend, she felt pressure to still go ahead with the party.- she felt that it would be a HUGE waste of effort. Many women counting on her. The party at her place. She had prepared the food.

This may be sacriligious but can anyone picture in their mind Mary having the wedding dinner and running out of wine at a WEDDING FEAST! Talk about some serious panic, Readers! To have her Son step up and actually deliver help (his first miracle, I believe.) for something that could easily fall on the low end of the 1-10 scale of disappointing people, yet Christ still turned water into wine.

He delivered her mind from a lot of worry. That was nice of Him. And I am sure there are levels of analogy we could pull from it that warrant meditation beyond the small things and let downs we feel today.

But there is relief in saying: "No." There is some sort of strength you can glean by being firm in saying or not running faster than ya have strength. Cause eventually you have to pay the Piper.

And the sooner you can learn to love yourself for coming up short the sooner you can tap into the grace that is available to all who let the Lord carry some of this impossible and heart breaking burden.

What is yours? or ARE yours, Readers?
Do you have moments like this too? The desire to wave the magic wand and be something that would elevate your status in others eyes? Or at least not let them think you are that huge of a flake?
Do you wish you could have them understand? Can you let it go and not care what they think cause:
They are They?
Another quote given to me by a friend.
What does that even mean?
It took me only a second,  but I figured it out. And it is profound.
It's helped me when I have had to say: "No. I can't"
"Wow, that aspect of my body is gone. Forever. At least here on earth. I can never change that aspect. I have close t
400 stretch marks that have torn my body apart.
The muscles finally gave way; I was ripped at the seams.
And Readers, that literally hurts.
My skin is so thin that rubbing lotion on it or scratching an itch too hard, can peel it.
It means that places like elbows or heels that rub up against things get rubbed raw really fast.
And those stretch marks hurt really bad. They call them purple Striae. And they can break open...
Our skin is the barrier from us and the world of germs, tears, etc.
Too bad my veins are attacked by my body in the same way. .
Those babies just can't sustain some things. Apparently, on of those things is knitting or repetitive stuff.
I know. It's "Freak of Nature" sitations I have mentioned. But they are real life consequences of a lifetime on prednisone, immuno supppresive meds, and a disease that doesn't have all the answers yet.
So on days like today, when I have to tell J. and other: "No." or explain why I flake out on them, I feel bad. I can't change this. I thought I could. If given the right tools, I thought I could pull this off.
The good news; I don't HAVE to. I can let go of trying to keep up with the pack.
I can set my pace and follow my gut so that I can be here for Jaden. Even if he doesn't see it that way right now. He wants me there on the sidelines.
Oh, did I  mention that we lost in the playoffs? J. wasn't overly downtrodden. He played his best.
He had a good year. Wasn't his favorite year but he put his heart into it and plugged away at it. He  did his part.

And I am proud of him. One thing that I guard pretty closely that ranks on the highest scale is our time reading together. Or watching a movie or comedy sketch on the computer. Those are tender mercies. And it is what I look forward to during the holidays. No homework. No sports. just hanging out with nothing to do but really learn. I get to teach and read to him. He reads to me. Or we watch movies.

Last year the best spot in the house was our bean bag. It was huge and fluffed and we cuddled on that and wathed those movies.

That's why I am getting things ready now.- preparing everything so that it can be a quiet magic in the house so when that window of time we can have together opens up, we have some magic going on!

In order for this to happen I had to be come back home to live.
Once someone replied to my circumstances living at home: "Isn't that social suicide?"
( I may have told this story before...)

I was taken aback. It was parental preservation- something that has ALWAYS come first on my priorities. To be here, for Jaden, no matter the cost. Sure, when you are single, working part time and living at home would appear to be depressing to a bystander. But when I was sick? Living at home has been the biggest blessing in my life.

I owe a lot to my family for the help they have given me. I am grateful that I have an intact family. It enabled me to come home and heal. To trial meds. To spend whatever amount of time I could with J.
Sure I wanted to date. But I had to wait. God's plan for me unfolded as I studied and figured things out. It took years for me to see this for what it was. Has there been heart ache? yeh.
Has there been doubt, sure. But whenever I truly looked at my situation and looked to my son I knew it was right that I didn't drag him into

So I didn't go to the funeral. I went back to bed. But I pulled up her obituary and watched her life Legacy. It was a great legacy. She did her best and it was enough.
Ached for them anyway.


After failing the doctor's orders to "try" a 5 mg taper every 4 days- and me going into it like some naive child or a pup excited to clamber into a truck and stick his head out the window or from the side of the back of it, with its tongue lolling out of its mouth.

- I am enduring a huge "mess."

And the end seems no where in sight.

Padre has said: "Well, it sounds like to me that you are going backwards, and not forward with this taper!"

ME: "That is how it works Dad! I went down too fast, my body reeled, then I had to make up for it by taking even MORE prednisone. In order to get off of it I have to taper and find out that my body can't/couldn't handle it and give my body what it needs in order to absorb that shock."

Padre: "How are you supposed to get off it? Seems to me you should have just stayed where you were."

Me: "good question. Except now that I went on Entyvio, I had to get off of the prednisone. Apparently it's the most toxic drug... blah, blah, hey will you cut more slices of the Birch branch so that I can make more Christmas ornaments?"

Saturday, October 18, 2014

My Christmas Theme Unveiled!


Well, the other day I stumbled across a Norwegian saying that will be my Christmas wish \Theme. And after looking at some things online, I want to decorate our fake, Charlie Brown Chrismas Tree in this fashion.

If you are new here you may be asking:
"Why so early?"

a disease I have, Prednisone- a med to help the disease I have- basic life altering things that make any day, besides the holidays, lets say, difficult. And make ya want to blog! And Choose Christmas Themes.... Who does this? A small population that I am a part of....

So in my Christmas letters.  I want to put this Norwegian Wish:

"May your Christmas be good and give you peace of mind. May all problems become small and disappear. Let the days to come be good and kind. Merry Christmas to you and your family." 
how cute is that anyway?!?
 and then I found these sweet little stamps from here:
(Norway stamps from 2010. Picture found on
If I don't get letters done this year, just come to my blog and see what would have or may arrive in your mail box some time in March.
Or maybe next Christmas!
So that Norwegian saying will be typed up on my olde type writer
(see picture above- that is my inspiration.) 
and sent to friends and loved ones some snowy Idaho day.
Yes, it isn't even Halloween. However, there is a cold in the air and the wind is whipping up like at the beginning of Ichabod's journey homeward after his frightful party!ooooo!
What is more frightful, I am beyond Boo-hoo-ing with this taper, my health and then I peeked at the news and we have a minor pandemic. Folks are freaking out!
 Stay calm, Readers. Of course use your noodle, but let's try to keep this in pandemic perspective.
Same usual rules apply: Wash your hands. Cover your cough. And wear your Haz Mat Suit.
 Pretty simple. Don't see why the fuss. kidding. It's  mildly disconcerting.


For me, and my circumstances, I have Christmas on my mind. Weird, I know. I don't even know what to wish for. Well, I would love if some smarty pants could come up with a med for Ebola. Oh, and maybe I wish I wouldn't have seen that movie, Contagion with Matt Damon in it, other than that I am good. I have all I need. Seriously. I am very blessed.
Even J. could not think of anything when I asked what he wanted this year. He stopped, thought about it a minute then shrugged.
"What I want I am saving up for... so I don't know." he replied.

"Oh, good." I replied. "Because I have a lot of ways I want to wrap gifts this year, so when you open them and they are empty; they were just for decoration."

He gave me a drab look. I thought he'd laugh...... hm.
 Don't worry, though. One day we were in Wal-Mart a mere ten minutes, picking up some milk, he found something he could tell me, to tell Santa, that he wanted. I told him I would pass it on.
And then I googled a favorite calendar of mine The Stendig Calendar

(a calendar that is so cool it is part of 'Museum of Modern' - ness. I made the last part up.)
 The reason why I love this calendar is because I can SEE it. Yes, I am pretty much blind.
Not necessarily due to prednisone. But it helps to have a HUGE calendar when you are on it because the days run into one another when you are sick.

The search for the calendar led me:

to some gal named, Hege's blog. She is from Norway. ( I think it is a sign that I needed more Norway inspiration! She is into interior design. Very cool pictures and work. I admired many of the pictures as I endured a few hours the other night. Thanks Hege!

Having some computer problems.... better wrap this up.

Friday, October 17, 2014

To Kill A Fruit Fly Again....

(Random Back Yard Photo. Fun to have a fire out back on Autunm Nights & Roast, as one grandkid puts it: "Puppies" i.e. hotdogs. )
Wulp, since my last post, I found out that the tomtato is just ONE of the ways a fruit fly is brought in the house.
Another? Being on prednisone.

Yup, I had the flies pretty much eradicated and then I start seeing them in the Fam. room. Hm. I thought. Odd. We have this place on Fruit Fly lock down.

And then guess what? I found a banana on top of the book case. Couple bites out of it.
Bananas are great for potassium. Especially while on prednisone. It keeps the muscles from getting charlie horses in them.

Guess we are gonna have to put me on
Banana Lock Down

in order to get a handle on these fruit flies. Again..

Thursday, October 16, 2014

To Kill a Fruit Fly

Tomotoes are the biggest culprit of the Fruit Fly.


Well, as a result of gardening and bringing in the produce, you get the dreaded Fruit Fly. Forget Ebola! Try getting rid of Fruit Flies!  (kidding, that ebola will be a blog post I bet.)

For the past few weeks I have been trying to bring about their demise. I think I have just about killed all of them and their families that have descended on our house this fall. Sure, I still see one try to fly up my nose or smell my breath while I eat fruit but for the most part they are gone!
Yah- hoo!

(P.S. how cute is that daisy up there? It was one of the "salvaged ones" adopted by me at the end of summer when a big store was throwing them out. And P.P.S, Aren't you glad I blog so the questions you think to yourself such as: "what does she do all day anyway?", can be answered? Yup, I do the tasks no one thinks of like the Fruit Flies.)

The secret? Vigilance! Every night the experts online tell us,  out the garbage should go! Other online  tips on getting rid of them:

The sink has to be cleaned and boiling water poured down it to kill the eggs.

(Look at this lone Sunflower. Readers, I used to have Mammoth Sunflowers- below-

 dotting my garden before this dumb disease took an even bigger turn downward. Look at the contrast of the sunflower in full bloom during summertime vs. fall and me not giving them proper care...Gosh dang!)

Back to the Fruit Fly.....

 EVERY NIGHT, Readers.  (the sink is their haven. well, one of them. the garbage disposal must be a nice gurgling lullaby to the babies.) Who is able to do this  I ask?? Clean out sinks, not listen to the garbage disposal to put you to sleep. Maybe I should try that when I have a rough night of prednisone.

No wonder things like ebola in 3rd world countries are hard to get a handle on. If we can't get ahold of the tiny Fruit Fly..

Well, some people might be able to get a handle on things. For me, it's hard. When trying to taper off prednisone, pioneer Entyvio, and it's football season- I don't have much energy.

So, I hate to take the credit for getting rid of them myself. It has been a group effort. Madre has been stealth like with the fly zapper whenever we have a meal. She could be the Fruit Fly Whisperer.. She slowly moves in on them when they are sitting on the edge of dish full of yellow pineapple when suddenly ZAPPO! She gets them when they go in for a lick!

(Padre let me borrow his camera the other day. I could barely hold it up without my wrist brace. But I promised you to start uploading some pics. I had to take some of them first. Which was a chore.)

I went ahead and told Padre that it wasn't necessary to try and hold onto the tomato plants as they weren't necessarily cost effective if I had to bring in a Hazmat Crew to get rid of Fruit Flies vs. just buying some at the store. ( No, we didn't get any of them canned this year. As is the point, I think, of gardening. Along with teaching us to be resourceful, independent, so on and so forth.)

The real reason we are rid of them is this:

 I bought 3. It brought the little annoying, hovering, and exceptionally quick flies out of the wood work.
When I first got them, I had to watch what the little fellas would do. Oddly a few of them just sat there, on the edge of the apple, as if they were suspicious of it; contemplating whether or not to enter it like they had seen a commercial on the trap. They must not have been able to ignore the tempting red liquid inside cause I have seen them floating around in the apples.

Side note: I went to find a picture of my trap and ran across a site that tells about the Fruit Fly.
One question they answered that I wanted to know was:

"Where does it [the fruit fly] Come From?"

Answer: "Outside."

Well, duh.

then this paragraph below, about the larvae grossed me out so I will share it so you can be grossed out too:

 "The fruit fly is instantly attracted to any type of substance that is in the process of decaying and is considered to be sour. This could include residue on the interior regions of trash containers, spills on counters and floors, wet cloths, mop heads that have a high concentration of moisture and food particles in cracks and crevices. In addition to this, these insects are highly attracted to drains and drainage pipes that have deposits of organic matter."

*That explains the pouring boiling water down the drains!

(Even being ignored these petunias lit up during the past few days. Tonight it is freezing so this was their last day to shine.)

Does that mean ALL the drains? Or just the ones in a kitchen?

So we now know that the fruit fly comes from outside. And you have to be able to get all the dishes done before you go to bed or else the fruit flies will be hanging their stockings on the mantle next to yours at Christmas time.

How do you Readers stay on top of cleaning? All I know is that the laundry is going pretty much all the time since I decided that J. could go ahead and just wear his clothes once to school and shed them when he gets home.
Thank you, enterovirus!

Thank you for making us feel that much more guilt and stress about cleaning!

Ya know those moments when you are just at wits end and the end of the day?

 When the dishes have hung around for a few days next to the sink,  or in the sink,  and you accidenttly left a load of laundry in the wash so it has to be REWASHED? And you find out that you left it there to be re-washed  when you need a jersey washed really quick in time for a game?

(readers, I tried to capture the stages of the berries... I think it got too dark.)

Do you find yourself at wit's end and you still have to figure out what to fix for dinner but you don't feel like eating yourself but know the kid (s) will really be wanting a nice meal cause football practice is rough. And now it's getting cold outside?

Oh, and you are bare foot and walking around noticing the build up of crumbs which makes you realize you also need to mop the floor. Anyone know what I am talking about?

No stinking wonder the Fruit Flies love that bunch of bananas I am holding onto in order to make banana bread- yeh, right!  I always feel guilty throwing any of them away cause banana bread is SO good. Once the banans are black really the bread is out of the question.

It's in those "Wit's Ends"  moments you feel desperate. Which may make you want to pick up a cheap pizza with absolutely no nutritional value. And try to ignore the fact they may not wash their hands as well as you do or running a fever cause they were on a plane with someone who helped somone in Dallas, Texas who had Ebola.

(another random backyard pic)

I guess I don't have to be so perfect with things. Instead of trying to get the sheets changed once a week just let them go until you the bed bugs ask to get a breather.

 But I have felt it my job to keep the house clean for the troupes. Or at least disinfectd. We have grandkids over. We have a big family. I live here. I get to stay home cause I am sick. So I get feeling the need to do what I can. But it is hard. And my predicament makes me see things from a possible epidemic stand point.

Fortunately none of us have gotten sick. I mean sick, sick.

At his elementary all the kids have been through the coughing and sneezing and now are onto some stomach flu virus. One of the teachers I talked to has been sick and going through Lysol wipes by the dozens.

I have felt bad. Almost to the point of ordering a haz mat suit online and going in after school each day and hosing it down. Oh wait. I can barely walk. hmmm... makes it hard. I guess all I can do is cheer them on.

And get rid of Fruit Flies. Somebody has to, right?

(Nephew watching his cousin ride passed the window on his bike and do tricks. I do the same thing; watch from the window and knock on it if the kid on the bike gets too "rowdy".)

Speaking of traps and living in my parent's basement-  the spiders are coming in. Hate those guys more than the Fruit Fly. So I set out my sticky card board traps. You won't guess what happened the other day!

I had to do a good cleaning in the bathroom with some Lysol. That stuff can kill ya. So I opened the windows downstairs. It was a beautiful day and with the fans running it really felt good. It also helped air out the place and bring down the toxic fumes a notch.

That night J. was in my room and noticed a spider slowly lowering itself down from the top of my window. A- HAH! I dared it to land right on my trap. In fact, I made sure it did by picking up the trap and holding it below it so it could get stuck. And guess what? It walked across it. I had to turn it over and do some quick thinking!

Which meant I just crushed it on it's second round of the trap. So now what? Yeh, there were some spiders that had gotten stuck. Small gnats. So that was comforting to know the traps I have set don't work!

(Why do little kids love the movie Cars so much? Jaden couldn't get enough of it either.This little guy found a cookie he'd smashed into the DVD and finished it off later...too funny.)

I think I want new windows in our bedrooms. 

Isn't it nice to get a random blog post? Take the mind off of things. And share information. Well, my hands are hurting from typing. This post has taken a few days to put together.

Wednesday, October 15, 2014

Cow Character & Evel Knieval



Did you know that last month was the blog's 5 year anniversary? Yeh, me either until I went back and started to read it from the beginning. Annnnddd guess what? The post I started on was almost the exact thing happening today!

I was on prednisone.
Up in the night blogging about...
J. riding his bike, going off curbs and me saying: "Watch for cars!"

This EXACT thing happened yesterday. He was jumping his bike. I hollered from the adirondack chair: "Watch for cars!"

Some things never change.


Well, the other day J. paid me an interesting compliment.

He had done some things that I told him were really good- heck, I couldn't do that even when I was young!

J: "Yeh, well, you have talents they just aren't as obvious. You're like a cow."

I lay there, my hands behind my neck, blinking up at the ceiling and trying to figure out what he meant by 'cow' and how that was a 'good thing.'

ME: " A cow, you say? "

J: "Yeh, you know how they just stand there?"

ME : "uh-huh...." still not catching the correlation.

J: "They aren't overly exciting standing there chewing their cud,  but they do important things."

ME: "Such as find shade beneath a tree and lie down and eat grass, or what?"

J: "They don't stand out as amazing is what I mean,  but actually you are like the ones at Reed's Dairy. You know.  Actually provide a service. Not just STAND there."

Mulling it over, as a cow would chew her cud would do, I thought that, all things considering, it was a pretty nice compliment after all. So I'm a cow.

He also gave me some sage advice about how kids are these days; what their thinking. I told him I should go in and try to help at some point in his classroom. He shot a look my way and knew I would only go into the ring of germ fire if I was wearing a mask due to my lowered immune system.

"Mom, I think that the littler kids might be scared. You don't want them to think your Evel Knieval or something."

Like with the cow compliment, I struggled to see what and how I resembled the stuntman.
Looking at pics online I don't see the resemblance. And nothing about what I do and what he did are anywhere close.

Monday, October 13, 2014

Why the Pred. Taper Failed

(Isn't this pretty? It is the picture that started my creative juices flowing along with Susan Branch's book: Autumn.)
Last night was awful.
(referring to Sat. Night)

I am sitting here, still recovering from the quick prednisone taper that I was chronicling on my blog, barely able to climb back on here and open up my album of favorite things to look at. I am so relieved to have made it through a h o r r i b le  two days.

I was just able to take a nice, hot shower. SOOOO grateful to have strength for that.

I had to wait today until I had the strength. I am grateful for wipes, no rinse shampoo, and these little poofy things that clean my teeth when I can't get to the real deal.

Being clean is such a blessing. Being able to get clean is a huge blessing.

I am realizing more and more the most basic things can be hard when you are debilitated. Everything takes so much longer. Getting ready for the day is monumental. hey I should throw in some random cuteness to liven this post up.

(how cute is that? my little nephew riding his stick horse. )

My heart goes out to you that have been unable to do these things for yourself. If you are here searching for answers, that I myself sought- I hope you can find them. I hope I know what to type to help some of you.
Getting out of the shower just now I made use of a rail that Padre put in for me.

 He put them into both of the bathrooms. They help me get in and out of the shower or bath.
I appreciate them so much. I had no clue how handy they are until I stayed in a hotel room for the disabled. I about cried at the "brilliance."

I guess I just thought they were reserved for those who were old, or more disabled than I am.

 I honestly wished he would have done it two years ago! My pride kept me from accepting my disabilities. And as a result, I went through waaaay more struggles, pain, and even injuries.

Pretty stupid, huh?

Why is it so hard to listen to your gut? Or follow through with what your gut says?

(hello, flash! J after a game.)

The most obvious one was this prednisone taper.

Why on earth would I wear a bracelet on my wrist that says: "Steroid Dependent" for the sole purpose of letting emergency staff or others know that an emergency could arise if they found me in some sort of adreanl crisis, then chug on and ignore the signs of an immenent crisis myself?

Ya, I know. Pretty Stupid.

I was trying to stick to Doctor's orders. But my body was shouting out to me before I headed into the second four day drop of 5 mgs. Severe symptoms cropped up and I just slogged through it until I had a really good idea- CALL the DOCTOR.

Another good idea is to keep a schedule and journal everything. Then if you get confused or dehydrated you or a loved one can review your list. Pretty simple but often dismissed.

When I made the call for help,

A different doctor was on call. I felt bad that I woke him from sleep but my body was in crisis. And I needed to know if I should go to the (cringe) ER.

(Insert an emoticon that isn't  yet invented that shows the dread that many of you reading this probably feel when faced with that option.)

(winning his first rodeo buckle..... )
When the on call person patched me over to the doctor I summed up my symptoms, the taper, and the Entyvio.
"That is way too fast of a taper"

he told me.

 Due to my symptoms and the shock I was barreling toward I was told to increase the prednisone to an even HIGHER amount than I had started to taper off of. 


Noooooooooooooooooooo~ but Yeeeeeeeeeeesssss~!   Did I mention that I wanted to say:

"Nooooooooooooooooooooooo!" to the doctor? But I could see the writing on the wall, sister! or brother.

And, by the way, can we all get on the


(Readers this is not me promoting to just do Your Own Taper Program, or say to run out to the latest health drug store and add herbs to the mix- )

Common sense told me that the taper was too fast. But for some reason I was led to believe or misunderstood Entyvio. It was as if the med helped the adrenals as well for those of us on prednisone. That was how I took what my doctor told me about it. Now I think it was just that it is for those of us non-responders.

 (Getting this cose to a rodeo clown for a little cowboy is like.... amazing... or something.)
But the cure for prednisone crisis is, well, prednisone.
(Which I could have told myself but I was following the orders.)
TAlk about two inches forward and 500 feet back.

My heart sunk.

ALL that effort for seemingly nothing. But the relief was not even close. It tooks hours to subdue. And then I slept. Not a restorative sleep but a horrid delirum.
I missed a good friend play the violin in church. I was sad about that.

Often it is hard to allow yourself the ability to use that noggin on your shoulders with all the information that you have accumulated.  And question those things when the red flags start up.

(cute pennant....  from easy to make from felt. Another craft medium for Prednisone! When I can move, I am so making one of these. I will have to hand sew it. : ) )

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