Tapering and Disease Progression= Long Day

Whoa.

(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.

Wisdom.

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.

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*

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.


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