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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