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.
zzzzzzzzzzz.

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



 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"
or
"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?"
 
*

I have been on Prednisone, on and off, for a good twenty years and it still surprises me with its power and horrifies me with the gradual unveiling of permanent damage amassed over so many years. And it tears down my perceptions and even has opened my eyes to things I thought I sorta knew something about.

Were it not for family, good friends, and keeping my doctors on a tight leash, this very easily could be worse than it is.

As it is too late to turn back any clocks, I have to endure what it dishes out. And accept, if possible, the results. Many will read this or see me and may think:

"Wow, I'd never go on that. Or do that."
for instance- my body is starting to look really weird. The break down of muscle became too much and put on a lot of weight really fast and my body literally just split. I counted around 100 stretch marks on my right side one night. When I told my mom this fact J. overheard and said:

 "So instead of counting sheep in your sleep, you count sheep, mom?" man, he is quick.

For instance, I would have not been caught dead swimming, in a swim suit, with the body shape before I understood.

The reason I accepted this fate about a year into a 60 mg taper and then an up dose to 60 mgs was that nothing else was working and I was wasting away. Yes, wasting away.

Three years ago my body seemed to know this when I struggled to sub teach and barely hold on physcially. My body was wasting away and something needed to stop it;

enter Prednisone.

Actually, I think I was on prednisone and had been for some time, had tapered down from 60 or something and was at a min. dose.

I will never forget the days that led up to me feeling that I couldn't take another step further by myself.

 I was sub teaching a kindergarten class at Westside Elementary. Standing outside as the duty around 7:30 a.m.  I felt the cold whip through my light blue J. Crew wool trench coat. I wore a cute head band, warm mittens, and doubled up socks in some black dress shoes. I think I even had on a pair of pink long johns beneath my dress pants- which were still baggy. I was bone thin.  The long johns didn't help as I was still freezing standing on the side walk.  I smiled at kids as they came off the bus and dreaded the impending day being duty at each recess and after school.

I'd been fighting this weird nerve pain that seemed to make my skin "crawl." Well, that pain turned from crawl to a numbing feeling once inside the class. As I put the classwork up on the board I felt the pain crawl up my neck and wrap itself over my head. I walked slowly to the desk and sat down while the kids carried out their assignment.

Somehow I managed to be duty the rest of the day, end the shift, and drive home. Sending up a prayer to heaven that the van started.

Well,  the funky nerve painwas shingles. It felt like fire. And it consummed me for more than the suggested shingle time frame of "a couple of weeks." It was 3 months of it. My parents looked on abd felt hopeless as to what to do while I tossed and turned on their living room couch with a "new" debility to add to the others.

Was it a random case? I looked at all the biologics and other big gun meds I had taken in the past- Remicade, Humira, Cimzia.... and there in small black print was the word for a roof top: shingles.

And that is the beginning of the beginning of my body going on auto-pilot with this disease, prednisone, and side effects of who knows what.

The last few days have been full of withdrawal and a feeling of fire again. Not shingles fire. But a burning just the same for some reason.

Why did I just talk about three years ago?

I guess I felt compelled to take  you back in time because that is when my body put a bookmark in the book of my life. As if to say- I will get back to you after I get this mess figured out.
I was a single mom, still am, struggling to work while having Crohns disease. And failing miserably.
So often I would watch the gas tank get down below the quarter tank amount and I would scramble to find any resources of making money or doing things to help pay for the life J. and I wanted- one that invovled playing sports, going to camps, paying for jerseys.

J. and I recycled cans, I helped him mow lawns and when he was at his dad's, I did odd jobs to pay for the gas to pick him up every other weekend. It was a life my body couldn't sustain.
I will never forget taking care of one  of the last yards with him. They had a dog. The yard was dry from not being watered so dust flew everywear and the bag had to be emptied every couple rows.

I was helping him to finish. It was late in the evening. Darnkness was all around us and I wondered to myself why on earth I was doing all that. For a mere 20 bucks? But I was teaching him the value of work, see? He loved playing sports and so we had to scrape and save every cent.

Luckily I had the op to help at the HS taking stats so that we could attend the bball games for free. Once a guy helped me do the stats for the younger HS team in the older gym. We knew each other through the coaches and me helping out. He was asking about religion and why I was still single.

I suppose the two go together. It didn't bother me that he asked. We'd been talking about life, me having Crohns, etc.

I guess, on the outside, I looked pretty, was nice, tried hard, etc. etc.  My illness didn't seem to be interferring "too much with my life." What he didn't know was a slew of surgeries and being on prednisone was the only thing keeping me standing. I wasn't offended by the question. I looked at him and point blank said:

 "You can't afford me- my nation can't even afford me."
I didn't mean him personally as he was in a relationship. But I was laying out one of the reasons my relationships hadn't worked out, had caused more than one guy consternation, and was perplexed that considering my health I couldn't even afford to work full time and find good insurance. The fight was more than I could bare. And I was living at home so it wasn't like J. and I were living in subsidized housing in a ghetto part of town.

I went back to marking the book when a kid made a rebound or shot a lay up.
"Really? Well, so and so has Crohns... but she is going to retire early."

That is one thing I have heard so many times in my life that it is hard to explain to someone that just because we had the same disease, meant squat.

It is like having breast cancer and someone saying: "Well, John had prostate cancer and got over it."

Totally different things. yeh, cancer is cancer by virtue of the name. His curiosity about why I was still "single" didn't offend me either. It did strike a chord though about friends who had inadvertently said something that hurt. I recalled being happy for a friend to have found someone who was divorced, but "could work." There was that word:
 
"Work."
 
I had been doing it my whole life, tried doing it while sick and couldn't. Work being the operative word here, the word that made you worth dating, marrying; able.
 
I'd worked a paper route from the get go, paid for school clothes by Jr. High. Went to college. Got all the experience I needed to "work" and then ended up with a body that couldn't follow through.
 
Except, here I was, taking stats at a game after helping J. shovel dog doo-doo in order to maintain a some standard of workdom in the annals of life.
 
Back to my conversation amidst boys playing a ball game that one day they would realize was part of their life that at one time seemed like everything when, really, they would find out there are worse thing than running ladders, winning a game, and fouling out in the 3rd quarter.
 
And none of them would recall a woman, who took their stats for their coach to go over at half time in the locker room, and what it took for her to get there and why she did it at all.
 
 







Well, after not sleeping the other night, I got about 3 hours and then went until early Sunday morning. Being on a high dose of prednisone brings one awesome thing:

You can eat lettuce.

I love salads. So, around, oh, 5 ish I had a salad. Then within about an hour it hit: withdrawal from prednisone. My body just slowly gave out like a wind up toy slowly stops.

I have no idea why I am typing right now. My throat feels so heavy. My hands and feet are clumsy.
Like I have kitten paws. You can't do fine tuning work. Tying is out of the question.

Did I mention the burning. It is like your brain is scalding. A pulsing throb through out the whole body. A numbness. And yet you feel fire up your legs and arms. To the core of the body.

I put some make-up on and am trying to get cleaned up for some church.

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?"

Answer:
 Crohns-
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 Philately.com)
 
 
 
 
 
 
 
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. (hegeinfrance.com) 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.

Readers,

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.
 
Wah?????????????????????????????????????
 

(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

 

Readers!

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.)
*
Readers,
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

SAME PAGE here?





(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 schoolhouseelectrical.com 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. : ) )

Sunday, October 12, 2014

Taper Fail

 Can't  sustain taper. Back up to a safe level and re-try.




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