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. : ) )

Taper Fail

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

Recess and Entyvio Report

 

(Random family photo of a child learning to pose for Padre's Pictures.)

 

Why does learning literally hurt?

J. will come home from school exhausted from trying really hard. And it reminds me of trying really hard when I was in school. Especially with math or something. Almost gave me a 'headache' trying to learn.

I might have to research it.

 

My nephew had started kindergarten this year and wasn't too excited about it. In fact I heard he hated it!

(That's him bustin an EWE up above.)
Can you blame him for not wanting to go to school when he used to play cowboy at home every day?

I loved sub teaching his age group so  

when he came over the other day, I mentioned that I'd heard he didn't like school so much.

He seemed to be ignoring me as he sat on the tramp trying to transform one of J's transformers.
 Then like a confident cowboy sauntering into a Saloon he said:

 

" Yeh, you heard correctly; I didn't like it."

That kid can mimic a kid not paying attention to a parent better than any kid I know!

 

I was curious to find out what brought about the change of heart.

 

"What made ya start to like going to school?" I asked.

"Recess."

 

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

DO NOT READ BELOW if ya want something fun or exciting in life.
Why? 
Cause it's the:
 

The Entyvio and Prednisone Update is next.  ya don't want to stick around and read. feel free to go to recess.

 

- I feel REALLY sore in my mucles. As if I had a hard workout in Coach Guilford's weight lifting class.

So the rice bags have been out. I try to avoid the heating pad in case I fall asleep.
 You should too.

Rice bags give a "moist heat" that is beneficial for the facist feet of mine. They say to alternate between that and ice for 20. And stretch every two hours. Yeh, right.
 

-Headaches. Zofran for the nausea has helped.
-Eye strain. It seems like my eyes tire out really quickly. Maybe it is connected to the headaches; causing them?
 

-I have made a bunch of stuff out of yarn. Apparently yarn is the prednisone craft mascot for this particular taper.
Really like the Lion brand.
I am getting to the point of wanting, or hoping, that I can learn to knit and maybe even become an accomplished seamstress.

Kidding.
But I do want one that isn't one of those fancy computer capable ones. Just want to keep it simple.

***********************************************8

Day 2 at 5 mgs.
Our bodies produce 7.5 mgs of cortisol by themselves. For 3 years pred. has helped me do it synthetically. Like most teens, they just want to sleep, scoff at work, and generally are in a bad mood. Or PMS-ing. Noticing this today. Not with J. but with my adrenal glands. But he has had some moments of onery too. I don't know if it's football or if football is helping. Or if this is how young boys act at this age. Or he is mad about this stupid disease and prednisone. too.

All of the above.

Did waaaayyyyyy to much research last night. My advice to myself- try to take it easy. But that would mean closing my eyes when I would actually like to look around. Lots of eye pain?

Even before I did the reading I did last night...... hmmmm. Entyvio, or no? That question is starting to sound like a game show name. Hope some scientists or experts in microbiology or endocringology are playing that game with a microscope and petri dish right now. 

Does it sound like I am a weatherman giving the forecast or more like I am an astronaut telling folks back in Houston all about something really technical and beyond my imagination about space?

Feels like both to me.

Some Superstitiousness, Football, And

 

 

 

* are Blue n White*

(Is it me or does the kid in the forefront look like he's teen or something? Man J. 's grown.)

 

 

Drum roll for Padre's photo sequence he was really proud of himself for taking...

 

( J.'s teammate, E. , running the football)

 

So it is October.

 

We have had some remarkable lovely weather.... my flowers are still blooming;

 

(View from below, in the Adirondack chair)
 

J. had grueling football practice all week due to a bye. The weather is supposed to turn just in time for the next game and into the play offs. Of course. Wouldn't be Idaho if it weren't freezing the majority of the time.

 

J. shared some HILARIOUS Halloween appropriate events with me. They happened to him in the last couple weeks and fall into the category:

 

'Now that's Hitchcock Freaky' !

 

Lately, the crows living in the Mordoor Trees outside our house, have been cool with us. So that has been a big bonus. Maybe they don't recognize me with the moon face?  

 

 See Ya!

 

 

********AAAAAHHHHHHHHHHHHHH as I was typing while on the couch, some kid stepped on my bare pinkie toe with a cleat!!!!!!!!!!!!!!!!!!!! ahhhh!

 

what am I even doing? am I typing? yes! I am! about crows! except for the time J. was mowing and heard some of them bickering and then a crow fell outta the tree in front of him. hm. Those crows have a sense of humor, eh?

 

 

 

Then the other day he was practicing on his bike by doing 'defying your mother to death' tricks and there was a rogue black cat running around.

 

"Don't you dare, don't you dare!" he said under his breath. It must have heard him cause it dared and it did. It pompously walked right in front of him.

That one made me laugh so hard. As if the cat knew he was the most feared animal on the planet...



(
getting closer to where I was sitting on the sidelines- I was worried about getting toppled in my lawn chair. Padre didn't bring the rocking chairs to this game. )
ok. Now that we have those minor things out of the way for the superstitious,

Let's talk horror.

If you think a crow or cat is scary then you haven't seen one on prednisone. I mean taper off it.



(Getting Closer.....)

I seriously hope my Dr. knows what he is doing. Yesterday I was actually able to go run some errands. I knew today I would have to drop another 5 so I got needed groceries, the car filled with gas, and somehow ended up at a craft store. (see previous post about my glue gun injuries. )

Too close....

And E. clips our toe nails....


Recently J. stumbled onto some dirt bike riding in the Transylvania, Romania area. Red Bull puts on some huge, several day bike ride called Romaniacs in the hometown of Dracula. Appropriate for this time of year. Where they ride is actually quite

pretty.
AND
Pretty hard....

Who rides up moss? Apparently these guys. J. watched for a bit then had to head outside and "practice". I miss that kid when he goes to school sometimes. I can honestly say I enjoy being around that boy. he makes me laugh. Is really insightful and can explain things to me that I don't get. I enjoy him. Wish I could still bike. Maybe next year?


*On the health front for those who are following Entyvio. We have some bad news and more bad news.  The first is that tapering off prednisone really fast, is not fun. And yesterday I got to see that it was just a band aid on my Crohns flare. The Entyvio hasn't picked up yet.

Today is another step down. The most difficult step, I bet. Bringing me down to 5 mgs. Why does this matter? Because the body produces 7.5 on its own. Which means I am gonna find out whether the adrenal glands are as hard to wake up as J. in the morning after hard football practices.

(check out that track start form! Coach Guilford would eat that up J.! )

 

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

It is a good thing we watched  a studio c clip about school pictures and even the one about the painting of Mona Lisa. All good ops to practice up on the pictures that will be immortalized in time shown to those who didn't understand you had a home perm done by your mother on your layered hair. And you wore glasses. And needed braces. And then couldn't change the class photo- retakes are only for individual photos. So that class picture is crucial.

I don't know about you but I have my fingers crossed for all children today.

I gotta rest,

Glue Gun Control Law

 

 

If you are on prednisone you should NOT be able to use a Glue Gun.

It's way too dangerous.

 

Since Christmas is mere months away, I have resorted to starting to prepare early for the events. Knowing I would have to taper off  prednisone during a ball park area of these next few months I wanted a jump start on my homemade gifts so that they were done before I was paralyzed. Or at least recall who they were for so I could save them for next year.

 

  So, I did what any person on prednisone would do and started pulling out everything in my craft area (loose term for the area where all my stuff is kept) to help the creative juices flow.

 

All of my crafts are loosed out over the family room, my bedroom, and upstairs.

 

Yarn, of all shapes and sizes is a big part of what I am making. And let's just say I don't knit.

 

Anyway, what I failed to remember was how hot the blue guns can get! And how thin my skin is. No, it is reallllllyyyy thin. I have burned myself at least 20 times. Have I learned my lesson?

 

No!

 

So I asked J. to help. He did the same unexpectedly- except his wound is a huge chunk of skin ripped off one of his fingers.

 

"Don't show me that!" I screeched when he was done dancing around the room.

 

 

J: "It hurts!"

ME: "Well I am nauseated especially when I see your  bone!

 Save it for Halloween!"

 

Due to the hap hazardous nature of the guns themselves; think of someone on prednisone with a glue gun.

Unlike a normal gun with a safety, a glue gun gets hotter and hotter and continually oozes.

The owner must plug and unplug the gun as there is no perfect setting. But all of those flaws don't matter because a person's skin on prednisone is so thin that when the box is opened to retrieve the glud gun, your skin immediately melts.

 

(Did I mention I am tapering off prednisone at an alarming quick rate?)

 

So,  I think that Congress, local officials, hobby lobbies, should all address this critical cause. We the people should impose laws on all Craft Stores that people only go to when it turns cold, they turn geriatric, or they are under prednisone magic craft spell !

 

When somebody on prednisone goes in to buy Glue Sticks;

 

I.D. her/him.

 

They are too dangerous waving that thing around.

 

By I.D. -ing you can detect prednisone usage.

A random event may go like this....

Craft Checker: "Mam," suspiciously eying a cart full of jelly-fied glue sticks,

"I am going to need to see your license."

 

Pred. Person- "I carry a concealed glue  gun license!  Isn't there something in that one Bill that protects my rights? You have no right to view my Driver's License! Besides it was a horrible shot."

 

Checker: "Yup, I can see that you were skinner in this photo and your cheeks now resemble a chipmunk's.

 

Person on Prednisone: "I happen to like gumballs that YOUR STORE sells and craft at the same time!"

 

"I'm sorry." handing your license back, " that actually makes you look good comparatively to how you do now."

 

"Look! I NEED these glue sticks! Okay!? I have 5 crafts scattered all over my house- if I don't finish it up soon...."

 

sccush: "We have a Code 6 up front, Code Six up front."

 

***********

 

hm. that was sort of funny. Right now I am not feeling funny. Sadly, I started this post just 2o minutes ago and already I'm feeling bleck again. I thought sitting up in another room would help. Nope.

 

Crafting has been helping but like I said, I have sustained some injuries with the dang glue gun. I should just use tape. But duct tape, although wildly popular now,  will look kinda funny on my presents...

 

This fast taper does seem to give me a glimmer of hope- yay! Who doesn't want off prednisone!?

but  it is like pushing someone down the mountain rather than them hiking out using their feet to propel them. It is a bit fast. There are the classic symptoms: head feels like it is being squezzed between.... something really hard.

Okay. Gonna stop there. Before my brain hurts worse- but, for the record, I have NO IDEA how this is gonna happen. Some serious tears ahead.  And not just from hot glue!

 

P.S.- My glue gun is not like the guy's in the picture but it seems a bit "industrial" for the level of gluing I am doing.

 

 

Time to Taper off Prednisone. Again.

(J in his 'Emotion Bowl We lost- 8-0)
My how time flies when you are on prednisone! Before you know it, you are crippled by the drug and, whether your body likes it or not, you must come down and off the peak of prednisone.

 

As any seasoned hiker knows- going up hill is tough. Heck, it's heavy. But at least you can set your own pace. Coming down, not so much. You and your blistered feet are relieved, no they are OVERJOYED to get back to the place you parked your car so you can soak your feet in a cold stream somewhere in all the horseflies.

 

The creek is shallow- which is sad because after coming down hill at 5o miles an hour your knees really need an ice pack too. Submerging your whole body in the cold creek would be a good idea but with all the rocks....

 

You get my point. I am on the Hunkering Down Eve of my urgent and VERY FAST taper off prednisone. In fact, there was some confusion about the whole thing. My GI thought he'd told me to start tapering with the Entyvio infusion numero UNO. (hey, we played that card game in our tents on hiking trips after a day hike or if it was raining.... where was I?)

 

Thankfully I had Padre with me on that appt.. and I took notes. Wasn't given the explicit instuctions.

So GREAT! What did that mean? More susceptible to a reaction (not a true allergy, but a Prednisone induced allergy. Whatever in the heck that means. You still have the same dreaded outcome.)

 

So it was a good thing I called and complained and then my nurse said:

 "Wait- you are still on prednisone?"
uh-oh.

 

It was a question that made my heart sink into my foot. It was as if she didn't realize I'd just completed a marathon and was asked to run it again cause the jumbo TV or whatever was malfunctioning. Either way, she was under the impression I was off.

??

 

Readers, Prednisone Fellow Readers, I have tapered in the past 2.5 a week and gotten down to around 3.5 and been bed ridden. But I did have mono in there. And I did fall a couple times and suffer concussions. So who knows what was what? All I know is it was painful.

 

Like all the pics I am putting up through out this post of J. playing our rival. Man, was that a chore to finish. And NOW we have two whole weeks of straight football. That's right. Gut punching, finish til the end and hope you peak at the right moment, football.

 

 

Due to the bye this week, my job is to get him through a whole week of hard practices, homework first, and cram reading in before bed. Oh, and tonights family home evening actually took place this after noon on a mini-walk with my nephew.

 

Lacking a stroller we grabbed my walker for good measure and he sat on the seat. It was pretty fun pointing out the fall colors, he picked some weeds out of the side walk for me and stowed them away in the seat, and then we had to head back so J. could suit up and fly to practice.

 

It was a gorgeous day in I.F. Each night I have tucked in certain flowers. Moved them up next to the house so they can stay warm and look pretty for as long as possible.

 

Why do I over do it?

 

I have even found myself in craft stores with a lot of other women getting ready to hunker down with enough crafts to last them through the cold weather ahead.

 

wah ha hahhhhhh!!!!!!!!!!!

 

I have at least five different projects going at the same time in order to "get a feel" for what the theme for this year will be.

Chic Paper had a cute drawer liner that made me think of citrusy fruits mixed in with fresh boughs and enterwined around sliced logs from the birch tree.

 

Yes, it's only October. It will take me from now til then to do these crafts.

Sigh..... and anyway I want to take my time. I want to slow down. Heck, this taper may tell me to STOP! altogether.

I will need to listen. I am ready to read ideas of things to make from Susan Branch's blog.

I am ready to sit down and write in my journal. I want to make dinners that smell good all day and then fill up a kid who is so tuckered out from practice, and trying hard in school.

 

All this cooking makes me wonder how my apron will fit with the body change.

Anyway, I am ready for some cozy-ness.

No running around town doing needless errands!

 

Just STAY HOME!

 

*thank you FED-EX, UPS, etc. that make this possible.

I want to take pictures again, upload them here, and share with you.

I know I have mentioned this before but Norman Rockwell is a favorite artist and person of mine.

He was said to have painted things in a way he wished they truly were.

he captured looks and expression so well... but he added a twist of something.

 

Like Susan's blog I want this to be a comfortable place to land. for myself as well. But also you Readers. Long gone are the times when people sat in a chair and read the paper.

Now we can turn to columns that we like. Google or Pint some information to help us learn.

I am all about that when I feel good.

*Learning.

 

My goals are to learn to sew better. After we get passed this pred. taper. I am keeping it simple right now for my brain. heck, I have a bruise just from wrapping yarn around letters and wreaths.

Not a good sign.

 

One of the doctors told me to Stop doing something that was causing pain or bruising.

I guess I need to just watch some TV.

Or flip threw some channels.

 

OH! the other day J. and I watched a Utes game. by the half I'd used up too much adrenaline!

Wouldn't that just be awesome to take in an NFL game right there?

Actually I saw one of the CEO's posh seating and there was an upstairs along with Tvs everywhere. A big kitchen. I'm sure a bathroom is handy. That's how I'd like to take in the game.

 

Football. Basketball. Heck, baseball. Especially if there was a really nice couch you could sit on with your afghan and fall asleep if needed. I bet they let ya have sleepovers if there is an upstairs and downstairs.

 

 

I don't want the next wave of germs to hit! Rumor spread there is now some stomach flu going around. Some kids are still coughing on desks and pencils and their noses are running out, but rest assured, they are getting new strains daily.

 

Laundry alone has been quite the ordeal.

Which reminds of a cute little sentence Susan Branch has on one of her cute note pads:

"Cleaning, when done correctly, can kill you."

 

Isn't that so true?

 

Especially if your immune system acts like a beligerant tween??

 

What are you Readers doing to keep your families happy?

Any good recipes or movies you could suggest for the dangerous haul down off prednisone?

 

 

 

Spiders!!!!!!!!! and something else Scary!







I am really glad that one of my readers is not geriatric! Which means I need to keep things fun on here.

So I will share with ya all a letter that I need to write to one of them.

dear Alexis,

Hi! I am so glad you are reading my blog! That makes me happy. Lately I have been way too serious. So I will tell you about what happened last night when I went into my office. I mean to the bathroom.
Because it is fall here and we recieved a lot of rain, the spiders have wanted to move in to a cozier place; inside our house.

Remember that cute little song about spiders going down and then climbing back up some water spout? Little babies think it's fun cause they have NO CLUE  what a spider can do! Yes, most fairy tale rymnes, etc. actually have frightening origins.

Back to when I casually went into our bathroom that I have had on high alert clean since flu season started back on the 1st day of school.



I walked into our orange floored bathroom and passed a bucket I have that says: "Laundry Only"
so that someone doesn't try to use it for a mop bucket. I like to soak hard to get out stains and that is the bucket!

My eye caught something in it that WAS NOT laundry. Unless the spider was cleaning something very tiny. Yes, a spider. There in my clean laundry bucket was a spider! Not a Daddy long leg but a spider with striped nylons on his legs. And a huge back side that was probably full of a million of its babies.

AAAAHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!

J. came to the door and asked:
"Are you okay?"

ME: "No!!!! There is a Spider in here! Quick go get the Spider Be Gone can !"

So he did. But he had to wait while I hurried up in the office, washed my hands and opened the door.

J: Where is it ?

ME: Swimming in the bucket!
(I had time to put the bucket in the shower and try to drown him. Found out they just swim after playing dead.)



Finally I opened the door, grabbed the can and some gloves and sprayed his swimming pool with toxic pesticide. kidding. It can be used inside as long as you clean the things it touches with clorox or something. And don't prepare food around it.

That wasn't enough for us. If this was a hobo- he needed more torture. So I threw toilet paper over him to trap him even more. Still not enough. J. put gloves on and we walked outside and decided his fate would be in the middle of the road. We dumped out the water and then had to find him with the help of a twig underneath the soggy T.P.

There he was..... This time J. sprayed. We had to stop killing him when the neighbors across the street needed to pull their car out of their driveway and run a late errand.

I hope he's dead and doesn't want revenge.



Another pest this time of year comes from bringing in things like tomatoes from the garden.

Fruit flies.
Those tiny things have the nerve to be small enough to fly through the screen door. We must need a finer mesh....

Anyway, the little pest have suffered electrocusion by tennis raquet! Actually it is a modern day fly swatter. In the shape of a tennis raquet. Cool, huh? We have two. After doing some intense research I learned that they can have a family in 8 days. What father let's their daughter get married and start a family that fast? Fruit Fly Fathers.







Yup, in 8 days they go from baby to parent. That glob of jelly that fell off your toast can be their delivery room. ugh! Your drain- another hospital with little more than midwives to help the tiny, annoying things into this world and then they just hover over your meal.

They can smell fruit from OUTSIDE your house!

or your tomatoes brought into the garage to save from the frost!





Last night we took out all the garbages and today J. is assigned to clean them all out. And mow. And some other stuff. I don't think he knows this yet. I better tell him. Okay, so we got all the pop cans outta here - They apparently love Coca Cola. Even when you rinse them out there are little droplets of pop that can be where they lay their eggs!!!!!!!!

So every time we sit down to dinner Madre and me grab our tennis raquets.



She is really good. You have to be very slow; no sudden movements. The raquet is a small electricution chair for the fruit fly.
J. found out that the arc can give your finger a nice jolt too. So be careful!
Below is a picture of a Fruit Fly on Death Row.....

Another way to eliminate the things is to set out vinegar traps.



 





Speaking of traps... I better get to Wal-mart and buy some more Sticky traps for those spiders. I wrote about another spider that is really small and annoying and they like to just put a see through sac of their babies on your cieling. To get rid of those ya have to vacuum behind frames and also the ceiling.

How do they expect me to clean, do laundry, sanitize football gear while wearing an Ebola outfit? Do you know how hard it is to find one in my size? And that flatters my figure?

Hope you are having a fun vacation!

your blogging pen pal,