Green Light on Entyvio

 

 

Guess What! I got the call from an Infusion Center telling me I don't have to wait for any pre-auths from my insurance and we have a green light for me to take the latest break through med,

 

Entyvio.

 

I will be the first in this infusion center. (I gotta come in first some time.)

 

I have decided to chronicle it here, on the blog and we shall see how it works, whether I can get off prednisone like the Dr. says I should be able to with Entyvio

Here are some new words I get to learn:

About Entyvio (vedolizumab)
Entyvio, an integrin receptor antagonist, is a humanized monoclonal antibody that specifically binds

to the alpha4beta7 integrin and blocks the interaction of alpha4beta7 integrin with mucosal addressin

cell adhesion molecule-1 (MAdCAM-1) and inhibits the migration of memory T-lymphocytes across



the endothelium into inflamed gastrointestinal parenchymal tissue. Entyvio does not bind to or inhibit

function of the alpha4beta1 and alpha E beta 7 integrins and does not antagonize the interaction of

alpha4 integrins with vascular cell adhesion molecule-1 (VCAM-1). The alpha4beta7 integrin is

expressed on the surface of a discrete subset of memory T-lymphocytes that preferentially migrate

into the gastrointestinal tract. MAdCAM-1 is mainly expressed on gut endothelial cells and plays a

critical role in the homing of T-lymphocytes to gut lymph tissue.


(Entyvio must work like a tool kit and hammers in those nails up there on the cells. )
The interaction of the alpha4beta7

integrin with MAdCAM-1 has been implicated as an important contributor to the chronic

inflammation that is a hallmark of ulcerative colitis and Crohn’s disease.(Reference: Takeda)

Due to being tired, all I got out of that was something about my cells sending hallmark cards to each other while wearing "Go-Pro" cams to show all the destruction they are causing.

Picture Hanging

I just hung this picture! I love it! It is called: Our Advocate by Jay Bryant Ward.

 

Usingy my stud finder and brand new measuring tape, (Padre thought I needed a Fat Max- I went with another brand. It is smooth like butter! )

I hung my picture. A LED light from Home Depot can be switched on to light my way and beams onto the new picture at the end of the hall.

 

Another photo that is on my Peach Fuzz wall color is this:

 

James C. Christensen next to the photo of Lehi- (See the Book of Mormon) tasting of the Tree of Life.

 

 

I wish I had this photo of his too:

 

 

The fellow, Jerome, is daydreaming about reincarnated as a snake. I just think he has Crohns or something.

 

When I pull out my tool kit I feel really cool. One because it is purple and I got it for Christmas. Growing up I let Padre do all the measuring. And after that everybody else. In the book The Last Lecture I love how the author was given the liberty to decorate his room however he wanted.

 

He went gung-ho and it was pretty awesome. Padre would never have allowed that kind of leniency. But he has come a long way. For instance when I was hanging the top picture at 7 a.m. he was really cordial.

 

Padre per text: "What are you doing??"

 

Me: "Hanging a picture so it wouldn't get broken or something."

 

Padre: "It sounds like you are hanging a wall frame rather than a picture."

 

He was right- that was one hard stud. It must be the main stud where all other studs have branched out. Surprisingly, J. didn't even budge as I pounded the nail into the wall. Allergies and football are helping him sleep like a teenager.

 

Fall is upon us. I could feel it beneath my feet the other day as I watered my flowers barefoot. And I can smell it in the air. Along Hitt road the trees on the north side are all changing colors. But not the ones opposite of them. hmm.

 

 

A River Runs Through Him

J. fly fishing.

I wish I could've uploaded this picture better.... it shows the line on the water just as J's wrist had flicked it, ;skimming the top.  It is so beautiful. I was not on this trip camping. Over Memorial Day it was finally established that I currently can't camp. I don't know if I will again. Thankfully Padre put in a fire pit in the back yard. That is as close as I can come to it.

But what was so interesting was that with Padre's photos on my phone I felt like I was there. I honestly am so grateful for modern technology. It has made it so I could "be" with them on this vacation.

It was so peaceful to imagine and the pictures of the sun setting on the river as J. fished seemed surreal. I wonder, as his mother, how many rivers he will fish in his life. I am so grateful that he has the opportunities to do the things that he loves. I love that he loves life, has good friends, has coaches and teachers who go the extra mile for him.

I don't know what I did to "earn" him in this life. Tonight he further elaborated about the football scrimmage today saying that "they" were a bit rusty at this point but he felt confident that things would come together as the season went on. Some of the one liners he said:

"172 pounds, mom." about the guy who was crushing him on several plays.

"I tried to swim through a tackle and he just grabbed me mid air." he said and makes the hand motion of a kid holding onto an airplane and flying it through the air.

"The skinny, small guys are lucky cause the big guys can't see them."

"Once E. tackled a guy and I clapped and said: "ya-ah! way to go E!" only to turn around and briefly see the dude before he clobbered me to the ground."

Another scene he re-enacted for me was him running after the guy with the ball, turning and seeing the Big Dude running after him, and then J picking it up and simply running faster to get away from the guy. I don't know what happened to the kid with the ball. I imagine he was tackled and J. had to keep running around the mix until the kid chasing him was tired.

The way he talked I thought they got demolished but they won both of the games.

It is hard to imagine that J. could be lifted up by his football pads and slapped to the ground because J. himself is a pretty stout fella. But when you see some of the kids out there ya start wondering if they are on steroids or something. Or failed a few grades. Who knows.

Bet J. wishes he was fly fishing during brutal summer football workouts.

A Cure for Depression?

Nothing like watching some videos on Vietnam with Padre to help your depression.

James Bond.... something- was a POW for 8 years. Yes, Readers, 8 years. His wife  was seriously as smart and helped him get out as he was.

But seriously, watching what he had to endure, i.e. : The Ropes until they would say: "I submit." Wow. I can't imagine.

Then I got the briefing of J's scrimmages today, Readers. I tell what- there is some comedy coming out of this season for sure- I don't know if it is J's spin on the re-telling but he had me crying tears of laughter so hard and it was of my own kid being shook like a rag doll before # HE WILL CHASE U DOWN- ripped his shirt off and then chucked him to the sidelines.

Oh, boy. This year is going to be a doozy. Keep dropping in, folks! There are some seriously funny stories to be coming. I guess I will have to wait for J. to squezze everything outta summer before he takes time off to take photos for me.

Peach Fuzz and Pep Talk

No, not the stuff that grows on your face on prednisone- but the color on my south wall. I love it. The other walls are in "Alluring White" - not Heavenly Hue, which is what J. and I had been calling it for some time before the painter put it on and I realized it was, well, Alluring.

I love it.

I am grateful that it is on my wall. Thanks to all who helped me take everything off the walls, put paint on, and put everything back up.

this summer started out with one goal: Order.
So much gets out of order when you are sick. And I wanted to get it back together as a stay at home daughter. I thought it would take a month or so. We are still working on it.

But, like a puzzle, it is coming together! And guess what! J. has told me that after his game he will take pictures of it, and upload it to the blog for me. He also said he would take pictures of the flowers and garden.

It is a bitter-sweet summer. I have read my blog and looked at myself from years past and really felt sorry for myself. Sorry.

The flowers have been so great. And as summer went along I loved adding to them. The other day I was out trying to water and suddenly realized I was the one needing water as my arm could hardly hold the purple wand up.

After getting in a lot of my special saline in (1 liter of water with 1/2 tsp of both salt and baking soda plus 4 T of sugar, which I adjust, ) I was able to do better.

I have a lot of thanks to people like Marnie, Nat, my neighbors, people from church, and J. that helped me get organized. J. and I have had a calmness to our lives especially now that everything is almost put back together.

The biggest wish is that I was put back together. ay, yi, yi.  Setting goals and accomplishing them are very different now than a long time ago. It is so hard to hit the "set backs" when you are moving forward and WANT to keep moving forward.

I had a friend chat with me the other day about someone she knew who had worked really hard trying to obtain a degree. She had family coming to support and even throw her a party. Problem was, she failed the final.

Annnnddd had to go home to friends and fans and tell them. It is kinda like the episode in which Mary, in Little House on the Prairie goes to that state math exam and ends up taking 2nd. Well, she had to ride the stage coach back in to Walnut Grove and face the whole town. (who knew she took second)

"Oh, ma!" she exclaims as they pull into town and Michael Landon is there holding the baby and the band is playing and she thinks she has to tell them she didn't take 1st.

They know but that one guy wid dee accentah says something to the effect that they are still proud of her.

It must have been like that for this gal who tried really hard and has to try really hard again and re-take the test. It's hard. Coming in 2nd- or not even getting to the event, is hard. At least Mary knew math pretty well.

But, anyway, it has felt like that this whole summer, off and on. Ya want to do really well for all those Walnut Grovers, but ya just fall short. ya know?

Last night, despite my own feelings, I had my J. to pep up. So I first consulted Dr. Suess in a favorite book, which I read to him and it has been a loooong time since we read a picture book before bed.
The book is the one about the places ya go. - how you will be famous, except when ya aren't, and the best of the rest, except when your balloon gets snagged in a tree and then ya aren't in first then either.

And how you can hit the slumps and unslumping yourself (like when ya get mono) is really hard to do.

And how you will face your problems head on. And they happen to have a big bum. (the illustration of the monster the kid goes up against has one-or it could be your own bum too. but that is another post)

And how you will move mountains. Hard to imagine doing- moving a mountain. but it's apparently possible.

Football season is here. Along with dumb injuries that make it that much more fun. Which makes ya need that much more pepping up.

After Padre had flip flopped down stairs and said something about not being able to close the paint can lid I had in the bathroom because it may splatter all over his flip flops, we had a good laugh and got down to the nitty gritty pep talk. About who you are. On the inside. And what you can become.
It's hard to see that. Not for a mom to see that in her kid. Or a teacher, or a friend, or whatever. It's hard to see that in yourself.

He even told me: "That's easy for you to say." And, Readers, it is. I don't have a problem looking at J. and telling him what qualities he has that amazing. It isn't hard to smile and look at that kid and not love him. But I'm his mom. And so, yeh, it's easy for me to say that he has the talent and ability to become what he wants.

J. listened quietly. And we had our family prayer together, he and I, right there in his room like we do most nights and it felt like the final touches to the pep talk I gave him.

Now, really early in the morning, I am reciting and trying to believe those same words I gave him last night. That life can be scary but it can be great. That there is so much to look forward to!

The words to a song from one of the CDs my dad gave me is of little kids singing the lines to a song and one phrase: "try, try, try." plays over in my mind.

Readers, I am. I try to stay hydrated. I rub that Vick Menthol stuff into my muscles and I massage the muscles that are spasming at the moment in my forearms and I type on. And I hope that what I am able to do is enough. It isn't much. Maybe things will change with the Entyvio, if I am approved.

Who knows? Gotta just keep on keepin' on.

My Flowers are Showin' Off

Come over! TWO of my coral hibiscus flowers have bloomed at once!

My flowers must be reading my blog because they are putting on a flower work show that would make Frank Vandersloot's Melaleuca annual Fourth of July Firework display a run for their money!

okay. So it isn't THAT huge. But I am so proud of my little plants! And I am so proud I was out there at just the right time this evening to see the way they were "acting."

Oh, and for the record, now that summer is coming to a close- there are some

Fake Flowers in the mix. Yup. I even had Madre thinking that the Hydrangea Bush was now blooming. Nope. Just some stellar fake flowers from somewhere. Thank you, people who make fake flower that look real. And thanks up above, for those that are soooo pretty- they look fake. Because that kind of beauty just seems too unbelievable!!!
(The picture above hangs in my window- it is entitled: The Mad Bluebird by Michael Smith. He caught this fellow on a freezing cold morning and you can now see that even the Bluebird of Happiness might be a bit miffed from time to to time. Look at that glare! He is NOT happy!)


Okay, last night was awful. Very. This morning got a bit better. But I have some shout outs. I have a team of pros that make it so I can go outside and rejoice over some flowers.

So that I can sit in my brown plastic adirondack chair and watch the world go by. Which includes a kid on his bike. J. Or maybe my neighbor's on their bike. Or talk to someone about my flowers!
Each year they seem to have a personality to them. Even the adopted ones- remember I saved them from the Flower Shelter?  (A huge store was just chucking blooms into a cart and I had to stop him!)

The cutest thing is this: I asked J. to plant some of them. And he went out into the middle of the garden and put them all in rows- so there is the garden, then the hUGE area where we couldn't plant cause everyone is too busy to take care of the garden this year, and then there is a little oasis of different petunias.

He also planted some earlier along the strip to the south of the garden. I called them: "J's flower bed," and every time I water them they make me think of him. And they are somehow more robust than all the ones lining the north side. See? They knew his sweet hands planted them. OR  was it that I spent more time there manicuring them?

Either Way! I am so proud of the flowers and their trooper like effort to get through the summer here in Idaho and for the late ones that came that will make September look cute too!

I love how they peak through the weeds and grass and just tell a person to have some sunshine and happiness. I hope that those who walk the neighborhood have loved the colors and different nuances as I have.

One yard, I'd like to thank, is one that came from a neighbor with which I was on a forgot your first and last name basis. But we always talked and I reasked each time.. ugh. Anyway, her yard was so loved and looks so cool. But she had to move. Get closer to family. She loved her little house and little yard, but without family it was just plain lonely!

Sorry no pics. I know great blogs are ones with pics. More interesting and delightful to look at. Also very time consumming. And hard if your fingers won't type. Which I found that working the muscles in my arms has loosened up the choke hold on my hands. Yes, there is mercy in life, folks.


After a lot of hard times there are those Hibiscus moments- where you see the bloom for only a couple days and then they leave- but I have loved "waiting" just as much as when they have finally bloomed.  Kinda like Christmas. The waiting and tending to things for that final triumphant day!

If this post is too positive, sorry!

I Was Gonna

wulp. still up. yup. dang prednisone. or lack of discipline? I was feeling pretty resilient until I just got outta my bed using my "bed cane" for assistance and that made me doubt myself briefly cause i'd been reading a succesful person's blog.

And then I walked passed the mirror. Ugh. The mirror. I moved my vanity over and that helped curb my vainess. But now I had to address the cushing's syndrome-ness of prednisone and I feel like I need to make an apology tour to all those that dated me because you know how it is...

Then I walked up the stairs. Uh-oh. Arthritis. Oldness feeling. My mom runs circles around me.
In fact one day, when we were trying to fix something in my room, she tried to lift the bed by herself and I of course stopped her as she was trying to get under the bed and bench press it.

"I lift trampolines, Amanda!" she tried to re-assure me.

I stopped and realized that my mom did- does lift tramps into people's car cause that is something the craft store sells. Which is kindo random,... but where was I going with this?

Oh, my mother.

She is so strong. And I had all these dreams and dealing with 'this' wasn't one of them. Being strong for her was another one of those dreams. Cause who doesn't want to build their parents a home? save them from any sort of worry or turmoil in their old age? I felt so prepared to do that for them.

Annnndddd,

I was gonna write books! I had so many stories to tell. Heart breaking, thrilling love stories. Cause I've had some really good ones.

And they became journal entries. Or scraps of paper flung into the clear rubbermaid boxes so that I could still see them and know they needed editing. Or maybe just left; "As Is." Cause I don't want to go back and write those stories now.

But I was gonna at one time. Now they seem to be just fine in their little containers. And here is where my story is. I finished up in the bathroom and while i washed my hands, instead of dogging on my refelction in the mirror I read the quote on the mirror that talked about overcoming adversities and then lending a hand to those who are struggling in their own and trying to find a safe shore or harbor.

My crippled fingers can still put out if I wait til the storms subside. And I can share stuff with you. Reader, that may help you during a hard time.

I can tell you that I have a "communication dry erase board" on my door so J. and I can, well, communicate. It says:

"Knock First."

I guess I am supposed to write my schedule down, like giving a report on where I am at. Log in how many hours I slept, and other medically important information, or whatever.

below it are x's and o's. J. scribbled a football play on it to describe some strategy or something. And I can't erase it cause it's so cute.

So that is our communication with the world, Readers. And I better try to get some shut eye cause tomorrow is a new day and I gotta get through it with a smile on my chubby cheeks.

OsteoArthritis Apology to the Quenn

Very hard past couple of days due to the arthritis, my bones, and my muscles.
Been up tonight due to the neuropathy pain in my body and some seriously sore muscles.

You might be asking: "But what does she do?" Well, I overdid it doing some benign things like walking to a picnic, watering my flowers (remind me to tell you about the adopted ones) and just plain livin' life.

So I wrote that I needed to make a royal apology. Some time ago I recall laughing to myself at one of the foundations the Quenn's daughter-in-law was supporting; OsteoArthritis. Or something. So Princess Di did charity work for land mine victims and then her ex's wife now is a champion of arthritis.

When I read about her championing it I chuckled. And I have arthritis. But this last night I have been really hurting. My muscles are cramping. Tendons and the likes are all pulling on my bone as if they were desperate for a cure or something. And my hands......

My first experiences with this pain was when I was trying to finish a cross stitch a looong time ago. I felt like a failure cause I was sick, didn't know what I had, and it HURT to cross stitch.- One of my favorite hobbies. I cried. I only did three lines of a project I was on and that was all I could show for my day.

Certain medications finally came out and my hands unthawed enough to finish that project.
now,

not so much. I had to give up that hobby. Which was fine. My eye sight is a bit blurred out by the disease and possibly prednisone. So that squinting isn't for me. However, it hurts to type now.

Why am I? Good question. I have to let you know that it is so hard to look at things- or have ideas, and not be able to tackle them, to DO them.

When your hands and feet and joints lock up--- it is a loss. It is so hard to deal with this kind of loss. Especially as J's mother. We both had a candid talk with a confidant the other day and we laughed.
And we also found out how angry 'this' makes both of us.

But we laughed about stuff because it was reworded in a way that made us just do belly laughs becaues the counselor hit the nail on the head. Life sometimes just throws stuff at ya that is so painful ya gotta laugh.

Until it is the middle of the night. And the pain from attacked muscles, stiffening joints, and disability make it hard. So I get researching and finding cute things. And run across a blog called:

Scissors and Spatulas.com

And I see a bunch of cute things... and I get wanting to

Create!

And then....
I recall it hurts to scroll down on the computer.
And then I realize my limitations. I have a big baby moment where I cry and the piano playing on my radio hits the staccato of my pain. so I tell myself:

"At least you aren't a quadripalegic." And at least you can SEE how cute the stuff she has made is.

And that is enough. Well, actually then I had to force my frozen fingers to do a little bit more this night and that is to write. Cause that is what I like to do. Write. And I can't believe that I have hands that hurt so badly. And then I think of all those old people or young people out there that are too young to have faced arthritis so early.

And other things. Like diseases, cancers, what have you, and what you don't have.

I read somewhere something to the effect:

"If you want to count your blessings, clean out your closet."

It is true!

I have been doing just that, cleaning closets out and getting organized. It is really helpful. And don't forget those drawers. Another saying my mom always would tell me as a kid:

"Everything should have a place, and everything put back in its place."

My problem was that I never made some places for everything to go so it just sat around until recently.

I think I might be making some head way!  But along the way I am being reminded how crippling this disease can be.....
gotta massage some muscles and am so glad it is almost morning! Oh, and I am sorry about laughing about what's her name - Prince Charles wife's name eludes me right now.- she is spot on in tackling the effects of bone degenration. It is so important to take care of your bones. And if ya can't due to meds leeching your calcium and a disease that makes regenerating bone hard....

I guess all ya can do is remind yourelf that there are worse things.

Sinuses, Second Guessing and a Picnic

There is nothing worse than having an ailment and throwing a nice sinus infection or allergies on top of it.

 

In fact, all the meds I take, seem to have this as a side effect written in the tissue paper stuff that come with it:

 

Sinus Problems.

 

 Not in those words, but something akin to it.

I brushed those off and looked at the big picture of it stopping my immune system from attacking me.

 

Even the new med, Entyvio, that I should be really happy about has this as a side effect.

 

 I just finished rubbing some Vicks Vapo Rub onto my temple and worked the tight muscles in my neck and head to see if they wanted to loosen up and possibly let me have a break.

 

Is this Idaho's fault? I mean, I have the humidifier going. What's the dealio? I am in my slanted, sleeping position in order to help it all drain to my toes and I am still throbbing.

 

So here we are. 

 

In fact, as I had my head in the assumed position to help myself breathe, I got to wondering if I had done or made the right choice on a couple of the biologics I took way back when.

 

Second Guessing is always ridiculous. I mean, what do I do about it now? But the VERY fact that as my head was tipped over my favorite Beauty Rest Pillow I said to myself:

 

"I wonder if I should not have taken blank, blank and gone with blank, blank."

 

Can you picture this? My nasal passages trying to clear, me looking up into the dark with my head tipped back and trying to think of some choice in the medical realm was right, or no?

The other day was nice in that I got to talk to some individuals and see some that are in my neighborhood that I hadn't in a long time. I walked over and several passed me. Jaden had to walk ahead then walk back, out of boredom, then crawl next to me. kidding. But it was slow going.

Once there, I watched a lot of people trickle in and join the line leading to the hamburgers. And hot dogs. Same folks were there helping. I appreciate that. One was an individual who has a lot of health problems and a wife with some. He smiled.

The smoke and heat was hard to be around just for me to get a well done burger. But the weather was perfect; overcast. And some sun at one point. J. was able to help set up. He came home and told me all about it. So that made me glad. Except that I wonder if I should have had him sticking his foot up in the air to give it a break due to injury.

But, they needed his strength. So the people that trickled in, I could tell that each had a story. I know a lot of the stories and it is amazing to see them all there. Some I don't see a lot but did when J. and I took walks and bike rides and boy could you see some pain etched on those faces. Or even just see that they have aged.

It is hard to walk the paths that I have frequented a lot on walks or bike rides or even parks that I have had a very different body, and a very different level of health. How easy it was! Or if it was hard, how different my body was! I was lean and not progressed to this place!

Four years ago it was hard doing my walks. But I forced myself. Very afraid of the very thing I am enduring. But eventually, I guess, this Crohns caught up with me.

I had the fortunate time to talk to an endocrinologist about some amazing break throughs at the picnic. It made me hopeful! And it made my head hurt trying to comprehend what he was saying.
It had to do with proteins in the muscle, and a medium called Titan. Sounds different than how we say it. And some physical therapy contraption that works the Titan. It is like a bike but you pedal backwards and it gives resistance to the muscle as you do so. And it helps the brain and blah, blah.

Man, I can't even blog about it. But i hope my PT gets one and then I will pedal backwards and then I might feel better.

Or just go to a picnic. They are always good. It's good to see neighbors and keep close as a community. Thanks to those who put it on. I enjoyed a wonderful marshmellow salad and another noodle salad that someone had to have put together that was very busy.

And some delicious beans. So good. People that serve have no idea how much gratitude many of us feel. Thank you.

How to Breathe with Inflamed Esophagus

It's Darn Near Impossible.

It's hard:

to breathe when ya can't.

So here is me live;  raw. From the heart today/night/day. That's how long these posts take now.

Okay, I know that Crohns affects a person from the mouth to the,

well,

other end.

It's a bummer, to say the least.

 

But for some reason I think it stops there,- the GI tract is my tongue to my bum.

 

Real simple, right?

 

wrongo.

 

If your body wants, it can send some serious acid from your gut, upward and well, then it isn't just your mouth now!
(Those ulcers in the photo; kill. Bring on the dissovable tablet: Sucralfate, please. Thank you Dr. H for figuring out this would help me and yuou aren't even a GI GUY.)

 

 

 

It's in your sinuses,

 

 

 

Eustachian tubes,

and pretty soon your eye balls are drowning in the whole mess too.
And who knows what happens in your brain. I just know it likes to go mess with the hypathalamus.
More research needed, please!
(oh, wait- I am that research. I forgot. Sorry)

 

For some odd reason I fail to remember that an esophagus, and the lungs, can struggle with inflammation too.

 

 Heck, inflammation; can be all over the body.

When this happens to you, you are in what they call:

"A rock and a hard place. "

Annnnd a few more boulders.

Some cement.

And that one stuff Superman is allergic to what is it? I forget.; Kryptonite.(after I edited it, came to me. Yes, I edited a little! woo-hoo me!

 

I haven't had Crohns attack me this badly in this area (throat and esophagus) so it is rather unnerving to have it progress in such a way and become annoying to say the least. (Imagine the act of swallowing, it is almost like blinking; ya do it without thinking.

Now I think A LOT about swallowing.

There are so many parts of the body that this can affect, I am losing track.

In fact, I can't even pronounce some of the stuff yet. So I have decided to stop even trying to learn the names.

 

On a particularly hard day with the wind pipe, I had to call E; a friend who has endured much.

 Because there is NOTHING to do for the inflammation that we have not tried-
take anti-inflammatory, prednisone, in a limited amount cause I want off it.

Take care of the allergies and such.
Diflucan and should be every day that I am on prednisone until I can stop.
Add some swishing of the Nystatin.
Possibly a numbing liquid to be swallowed and then.....

endure.

Ya get a little ancy after so much enduring!. Get restless. And want to plant more flowers outside or something; forgetting that playing in the dirt while ill can make you more sick if you don't put your gloves on.

So.......

doo, doo, beep, bob, dee, dee.
me pecking out the phone number a good friend.


 

ME: "E!?
Do you have a few minutes?"

" 'It 'is burning and I feel like I am slowly suffocating. Do you think I am coming down with pneumonia, ?"

 

E: " It's the inflammation, Honey. Ya gotta calm down, breathe slow, and work through it."

I knew this. 

 

But I needed to hear the consolation.
 

ME: "Could it be my asthma? Should I be doing the inhaler?" I asked wondering what on earth is causing or what on earth can answer this situation.

But I already know: my esophagus is inflammed.
And ya add a carpet of thrush on down it and of course it is miserable to swallow and find that it just doesn't let up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

E. isn't a doctor but she's been through the gamut and is up to date on my situation: Esophagitis and Gastritis after a fungal infection was recently detected and beat down.

 

On its heels a battery of blood tests revealed something hiding under the radar that mimic all the symptoms of esophagitis and blah, bluck, boo.

A package of pain, let's say.

 

Even knowing and treating this, the Crohns attacks the tissue and puts a choke hold on tissue.
Anywhere.

 

Literally. It is like someone has punched me in the neck at times.
whatayado?
 

* I was writing this dramatic, informative and spiritual post for those who google like mad late at night and try to understand what you are going through and if it connects to anyone, someone, anyone else and ya read it ferociously for answers and tips- and then J. jumped outta the shower, and like a puppy crawls up on my bed leaning on my lap, and  pulls up:

 

Not this photo, but:
' NFL amazing runs.'

(but this photo is really pretty,why didn't I plant mums, chrysanthemums, and Kale in the May???? Too late now! Darn.)
 

 

hm. This football on youtube  that I am having to listen to and watch Really affects my writing; having your kid put on some seriously cool runs and touchdowns is a fun distraction.

 I am going to have to put some Josh Groban back on or something to get back in the mood maybe.

 

Nope, it's gone. Josh can't get it back.

 Sigh.

I will have to hear the cheer of a stadium crowd, an announcer, and J. watching 2014s best runs, blah, blah. Great. We were talking about me breathing! Or not being able to! Who cares! Ya gotta move on!

 Before I desert this post, I will leave my best advice on how to breathe through the space of a shoe string.
 

So to answer my posts' title, on how to breathe when you can'tL 1. you calm yourself. 2.center yourself.
3. Try talking to every muscle in your body; send a message to that tight space in your throat and accept that you will have to breathe through the space of a straw.

4.Use music.
5.Look at pictures.

6. Stare at the ceiling that you stared at when you were growing up cause you are a stay at home daughter.

 

7. there is nothing left to do.

Unless you want to or need to take more prednisone- why? Cause it helps with inflammation and will open that passage up. But if you want to get through it and keep working on getting off Pred and needing it, you try to do without it.

I guess. Actually you gotta just get through this very moment. Everything stops.

 

You have to stop.

*I can't add pics, keep typing, or revise any of this. Because I need to do just that- stop and breathe cause I am uncomfortable. This is where it is so. hard.  I guess I gotta throw my head back in a "special way" and look at the ceiling.                *

 

Whatever it is you are doing, want to be doing.... you have to stop.

 

 

(Don't do all my advice at home. Call your Doctor. Or go see 'em if you can't breathe. You know your body. I just know this is all I can do after the docs have done all they can do. )

 

You will know what to do. Pretty soon the panic will fade and you will be able to handle the pain and discomfort you are experiencing. A point comes where you can feel it go through you.

Pass through you. Like a train coming into town and heard out the window. Its wheels rattling and whistles blowing.

 

And then it's gone.
Or it goes in revers and just stands stagnate in the middle of the intersection and a bunch of cars pile up behind you. And you wonder:

"What on earth are they doing? Taking a lunch break right there? Do they realize they aren't in the stock yards and just resting right there at the busy intersection?"

My Point:
 

Sometimes it takes a long time to be gone. HECK, maybe it never leaves, heaven forbid!
Those are long moments.
 

Moments that I have to just look at the ceiling. I can't write. I have to look up and I wish my computer was above me somehow.....

 

Eventually you get on top of 'it.'

 

'It' , like that big ol rail car, doesn't leave but you are in place where you can let 'it' happen.
And right now it happens to be freight train stuck in my  throat. 

 

Like I said up above- I thought I knew this dumb disease(s). But it is throwing things at me that are just crazy-ness. My fingers normally could dance across a piece of paper or keyboard. But the work I did the other day, some light lifting, such as picking up a detergent to pour into the washer and maybe I lifted the blow dryer and a basket of lost socks.

 

I know I did a lot of pointing out to others what to do- maybe that was what did it; instructing.

 

 'It' caused two big veins in my recently sprained wrist, to

BURST.

Didn't Heavenly Father know I need this hand to write?

WHY?

 

Who knows.

 

Doesn't matter.

 

Bring back the wrist brace.

 

Dang.

 

 

 

Boo- hoo.

 

 

But WAIT!

 

I can push through this.

 

 

Cause:

 

My flowers are looking awesome and I took a small stroll around my neighbor's flowers and they are super cute and gave me ideas of something to plant next spring. 

 

Yay!

 

 Around town there are beautiful blooms too!

Along a busy street here in I.F. are some forlorn houses but there is one that has some amazing tall Zinnias or Dahlias bursting from the flower bed!!

Why didn't I think of them when I planted in spring?

 

Today hot rods were line up around the Snake River green belt. 

 

four years ago J. and I road our bikes down there and my orange bike got a flat tire.... doh!

 

 

 

CAUSE....

 

my little nephew came over and when he saw my impatiens beneath our big tree in the front yard and he said:

 

"Ohhh! How pretty!"

 

and bent his little body down low to smell the flower= careful to hold his hands back and just touch the petals with his sweet nose.

 

Yay!

 

Breathe.

 

Just Breathe through those hard moments.

 

Every swallow that feels like gulping carpet down your throat is agonizing. And annoying. And doesn't just go away.

 

I am finding out a lot about the extent which people can suffer.

I am learning I was and am oblivious. I need to focus on others so that my load is easier to bare.  

 

Gotta go. J. is here to spend some good quality time watching some inspirational football footage.

 

 

 

 



Rollin Out Stale Posts!

Okay, I have had some posts sitting around, and like day old bread, they get stale in my mind. So I just throw them out there.

If any seem discombobulated- they are. I didn't go back through and read them and edit. eww! editing!

I need that clean slate feeling so here some are...

Yup, I'm Up

I have successfully written 2 posts. Over several days. I wonder if I should even post them. They seem sorta lame. I tried to read something about gait and falling in the elderly and how they can do certain thing in physical therapy or occupational therapy to help them.

Lots of big boring words. My eye lids are finally drooping. The last two nights have been miserable sitting up and dealing with inflammation. Everything seems to be a result of "inflammation."

Somebody find a cure.

We Doin' Anything Big Tonight?

Ever have your ox in the Mire? We usually have a herd of them stuck in mud on Sundays and rationlize the need to miss church in order to get those oxen out of the mire.

 

Why the heck do we keep those mires around the place like land mines so our oxen are constantly stumblin' into them?

 

Well a mire happened tonight, juuuussst right before tuckin' into bed.

 

 

J. asked me about this question at a late hour. He'd just got outta the tub soakin' injuries and sore muscles from the brutal FB practices.

 

"We gotta have the stamina for the fourth inning. They want us to be in good shape."

 

Some Epsom salts in the tub he tumbled down the steps and asked me this simple question thinking he might have to do some work because the walls are painted and things need to be moved back.

 

"No, it's late let's just get in some reading and get you to bed so your body can re-coup. "

 

Mine is needing some re-couping to after a fun medical discovery and finally bringing on an anti-biotic to attack the sneaky bacs. Those devils. Dang them. They really have made me mad.

It is so hard to see what needs to be done, and you can't do it. You have to sit there and......wait.

Even a story or a sentence to an article, has to wait. There the lines are, in my mind, but I can't do it. I have to wait until the body can do it.

Then a rock collection in a glass mason jar got knocked off the shelf and crashed to the ground.
An ox that didn't care if we were sick and tired!

J: "Guess we got something big goin' on now."

Yup.

Flash Flooded my Flowers!

Well, it's rained.  A lot. And somebody didn't put the rain gutter extender, thing a ma jig back on so all the water from the rain gutters dumped onto my flower beds.

At first I was glad to not have to worry about watering. And then it dumped on us.
Yes, I am aware that hurricanes are happening elsewhere and this is my own little ordeal while I deal with other ordeals.

I was so hoping for that 'Melalueca Firework Grand Findale Flower Display' I spoke about in the previous post. When I went outside to inspect the damage, I found my peonies swimming, trying to keep their heads afloat. Immediatly I grabbed a small container and started bailing them out.

J. standing there in his cleats ready to run some ladders and other torutuous drills- was asked to help.

Ahhhhh!!!!!

Summer is Whizzin By and Idaho Allergy Season



This hibiscus is one of the flowers I planted in the spring. It had three gorgeous blooms, Then

nothing.

NICE! I thought. One more plant just hanging out not doin' its job in my flower beds.

 However, after being loved despite it all,  it finally had one bloom come again! So pretty. But they  lasted two days. So it is on par with when there is an Eclipse and ya run outside to stare at it-  I am disappointed that it can't bloom like the petunias. That is the stoutest flower in

 Idaho, I am afraid.

It is so hard to harvest a garden, weed and water flowers and then turn around and try to get more into the ground so Spring looks awesome.. I made the mistake of watching a Martha Stewart video and I have to put only 1,000 bulbs into the ground in Sept. in order to get the "sweeping" blues of the cute little flowers that poke their heads up through snow and make you feel that just maybe, the snow will leave and bring sunshine, spring, and WIND.

It has been so windy, the flowers ask for water twice a day. Jaden has informed me that guys don't plant and water flowers. Wha?

 I have already forgotten the names of the bulbs I need to plant 8 inches under..

glad she did those you tube videos.

ones I want to plant. 

See how you just need a million of the Blue Mascari ?(a lady says they are the work horses of, well, the garden or flowers. Don't know which. ) I just need J. to take out some time from his busy football, lawn mowing, enjoying summer schedule to plant a million bulbs like this. Right?

Then I need to plant some other flower that is going to be put on some dirt above the Mascari Work Horses. So that we get double and possible triple decker layering.

Are you writing this/ reading this, J.?

Lots of planting in the fall. So familiarize yourself with bulbs of the Dutch, Son! Or maybe I will just blog about it and then we can look at the pics of them and imagine how cool it would be to be Martha Stewart and have a sweeping landscape of these in the spring.


Aren't these crocuses so cute? They are the triple layer.  Each flower will come out at a different time.

Especially if I can get some Daffodils in to contrast the color!

Somebody call a Nursery in Town! Get 'em over here in September! Or get Martha over here! This is getting out of hand! She could turn our whole yard into flowers! Padre would love that-

To be honest with myself, I may be lucky to get in a few tulip bulbs in.



 flowers are an extravgance... But I just love them. Each day I like to see their progress. The changes they make. Glad I could have them this year.

Padre has even liked them. Today I WILL take pictures. After church. (this didn't happen. Hence the uploads. Had a bit of a thingy ma jig to deal with so I couldn't deal with photobraphy.


Well, Readers, it's late. Well, now it's early. I can put my make-up back on since I have been up all night!

 I've been reading various things online then finally broke down and came to where I feel the best; Writing. Actually, only because I treat this like a journal, and  have no thoughts whatsoever of anyone around the world reading it, which makes it easy to just be me. And actually I did read a few good tips on organizing while I have dealt with the joys of whatever is going on in my body, I Hope to implement the tip sometime in, oh, say the next five years!

Tomorrow is a Sunday. (when I started this)

There was not even a breeze today- the little twirler in the back yard didn't even spin. And muggy. Mississippi Muggy.




Or it was menopause.... Either way, it was muggy!

My flowers are going to be giving off their last blooms this month. I am hoping they behave and  put on a finale like the Melalueca Fire Works show every 4th down by the Snake River; It's a pretty big finale if you haven't seen it. Luckily we can walk to the corner and take it all in but if you get right under them that is fun too. Just pray for a strong bladder and that rogue fire works don't detour your way and burn you.

The adopted flower I brought home, better get their act together and show me how glad they are that they didn't end up in the dump when the large retailer decided to clear them all out to make room for school supplies.

I had to do more dead heading and Miracle Gro-ing on these ones that it really wasn't cost effective. Ya know? I mean, who buys flowers this late in the season and tries to resurrect them? because they were cheap?

I think it goes back to the Grand Floral Finale that I am expecting.

-k here is something unexpected. Cold weather. And a lot of ferocious wind and rain has been happening. It helped me to not have to water all the flowers but still! IDAHO!


**

It blew all day yesterday. Plenty of twirling for the awesome wind spinner.


So here are the things that made me laugh the past couple days: Michael Landon.

Michael, Michael, Michael.

Been watching the series of 'Little House on the Prairie' for those hard nights and suddenly realized why I wanted my hair long when I was a girl, and wanted to pretend I livid on the frontier, and realized how much I loved watching this show everyday after school at 4 o'clock. It helped me tell what time it was for one.

Okay, the first go around of the show, when I was a girl who'd just come home from school and almost into the second hour of TV watching joy, I never noticed how much M. L. loved to have an arm or rib cage injury. (It happens about every couple episodes.) It was so he could show off his tanned, muscular body!

Apparently, it wasn't us kids watching after school with our bowls of mint chip ice cream, stirred to a thick past with a spoon,  that gave the series such great ratins! My google research says it was the women over 40! (I stumbled on this stat when researching why Melissa Gilbert's face looks radically different.)

That made me laugh.

When I was younger I was focused on the frontier- the thrill of having to cook meals over a fire, take baths once a week before Sundays out in the barn in a big tub of heated water from the fire.

 I was caught up in the fact that I needed long hair like Mary and when she got glasses and went blind, it helped me dramatize a journal entry about needing to wear my own glasses to go with my own buck teeth.



*The Torment got hold of that entry and it went pretty much like the episode where Mary wakes up blind. Minus the actual blindness.

From then on 'The Torment' would only have to say a one liner like:

"I just want to see! I want to see the Tetons!"

before he and I got it a knock down drag out whining with my four eyes to help me.

I also realized from Little House that I wasn't the only one with buck teeth.

Poor Melissa Gilbert.

She had to have buck teeth on a T.V. show. No thanks! Going to school with mine were enough for me!

She had  fortunate mouth care that made it so she had braces and other horrendous dental work, on the back of her teeth.

Or she wore her head gear at night like the rest of us poor saps. She didn't have to wear them on the set and get a dodge ball bounced in the face requiring a trip to the orthodontist to bend it back and fix the brackets.

Noooo... when her co-star mary shoved her out of the wagon once, she didn't have dental ware to get bent out of shape.
Did you know that in real life, her and Nellie were friends? And that her and Willie were actual siblings? They were both adopted. Just some tid bits to offer you Readers who don't have time to learn these things.

J., upon seeing me watch the series said:

"Is that why you have Jammies like that?" pointing to one of the Ingalls and then to me.

"Yeh, looks like that I was indoctrinated to want to wear night gowns and head caps at an early age."
Notice how Pa has a pair on too? I think you may be getting some for Christmas.

J: "Heck no!"

ME: "Yup, I already put it on your list and sent it to the North Pole! You would look like Albert! Or Pa! How cute! Please say you will!"

So like I mentioned above, it has been windy. Today it rained. Thank goodness cause our allergies are going ballistic.

In Idaho, allergy Season is year round really. You can tell when those of us with allergies are really sufferin'....

We are unable to wear our contacts (this is now permanent for me due to Crohns/ yup/ It attacks your eyes too. Lovely. So I got to feel sorta cool and wear sunglasses that weren't wrap arounds seen on the elderly, only for a short time period. dang. Sunglasses are a rite of Passage into the world. Ya know? That first pair of cool sunglasses takes you from the small world of elementary and throws you into the world of teenage-ness and all its coolness. It along with fake baking or laying out on a regular basis, are the base of your new life- of wearing sunglasses rather than squinting into the sun.

We had a neighbor when I was little that had this squint down to a science. He was the last of the kids in the family and we fueded regularly with them. Anyway, I noticed he squinted like this indoors too.
So maybe it was more than the sun in his eyes.

The High School aged sisters of one of my friend's gave us all we needed to know about laying out. They cut out and wetted paper towels in the shape of an almond and put it over their eyes so that there wasn't even a sunglass line to ruin your tan.

Loads of baby oil to maximize skin cancer- we didn't know much about that back in the day.
And then just stay outside all the time. Perfect tan.

Back to sunglasses....

A person is instantly in awesomeness once the shades are put on. Without glasses you can actually play sports without the fear of ruining an expensive pair of glasses.  I had to wear 'Gas Permeables' which just made it feel like you had real glasses on, just on the inside of your eye. And what kind of name is Gas Permeables? They were hard, just like the  hard contacts, minus the easy name.
The name meant air got through to your dry eye ball. Which I contend was just as dry, with GPs on vs. Hard.

Those lucky people that didn't have astigmatism went on wearing their cool SOFT contacts. while mine were moving around my eye ball with every blink and the edges caught the lights on the basketball court and at night it made it so those lights from cars, etc. zing your eye ball.

If you blinked abruptly, like to look quickly left or right in class,  the hard lens flipped out of your eye. This was a pain. Especially during a basketball game.  The ref had to blow the whistle, stop the game, and everyone- including your rivals,  looked all over the floors for the lost lens.

As I got older I found that a speck of sand would require me to get off the road and try to help the crying eye. It ruined and made my teal mascara run down my face. I also had blue mascara. You can imagine how that looked on a person's face after the eye was gouged by a small speck. Which the gas permeables shoved into your eye turning it into a sliver.

J. is now facing all these things too. Orthodontic work. Glasses. But now it is cool to wear glasses and more choices. And he can successfully put in contacts. Soft ones. They have soft ones for the astigmatized kiddos too. Kids are so lucky these days.

Back to some funny!

Some of the grandkiddies were in

The War Bonnet Rodeo

Q-tip. Brute Force. Tornado. Peanut Butter & Jelly.

Are just some of the  names of the intimidating sheep that my 5 year old nephew went up against. By virtue of genetics more than anything, he was able to look very cool, strutting out to mount his mutton; his spurs chankling. (genetics have made him very lean and has a cowboy strut already.)

The winner was A young girl, three years of age, wearing a helmet. She rode:



SHOCK WAVE to victory.

It was a good thing she had on a helmet, cause her head just kept hitting the bars of the rodeo ring as the mutton tried to brush her off using the fence for help.

Didn't work. She held on like glue. I wonder if that was cause she was three and didn't know any better or had really practiced?

The yonger nehpew was able to compete in 'The Stick Horse Race. '

Which he took very seriously. And lost by a large margin. His little legs made it difficult for his horse to tromp through the dirt!

There was a 'chicken category' for the even  younger ones. They had to catch chickens. Yup. The announcer treated each event as if it were the cowboys out there riding bulls and broncs. The kid's names annouced over the.... those one things that has a name that vanished from my brain.

I wish I could have seen it, but hearing J's experience at it was a gut buster.

On the home front....

The last couple of days have been wowzers. (this was started a few days ago.)

Did too much one day, paid for it the next. I was stickin' my legs up on the wall to help with the water retention, massaging the bruised calf muscles, and wearing Vapo Rub pretty much everywhere.
That mixed with salt may have helped the bruises. I don 't know for sure, because I iced them as well.

One hilarious moment came out of the last few days that was choice. This is my last story. I promise.

A trip to Wal-Mart. After a couple of appts. Before I was even walking in I debated whether I should.
I needed a couple of items that just couldn't wait. Sooo.. in I went. And I tried to hurry.
Ya know those scooters they provide, that you might play on when you happen to be goofing off or horsin' around, and they draw a laugh?


Well, when you get to the point of actually needing it to get all of your errands in WM's, then it isn't so funny. And you lose that confidence you had as a teen and living life like there is no such thing as aging or arthritis. And creams that help arthritis that carry strong smells. So as you ride in the scooter you feel a deep dread.

ugh. The scooter. Yup, you are using the scooter. After a few trips to the store and holding onto your pride like you would... hold onto something very dear that I have no word or memory recall as to what word I would use here, nor do I have the imagination for a clever analogy here. Just know REader, it is something you hold onto; your pride.

doh! Riding in the scooter! Dang. It. Where was I? Oh, the times I went ahead and walked from one end of WMs to the other and was almost crying cause it hurt so bad or I burned all my energy and got home only to have no more energy. Synthetically produced by prednisone, of course.

The scooter truly is a relief and I find my myself seeing folks at a different level. Others that are on them I now talk with and have heard some sad stories! And little kids. However, the other deay I was at the back of the store and needed to get to the milk so I was bee lining it, gathering speed when a person in the craft aisle or detergent aisle, I forget, steps into the traffic lane.

I immediately hit the brakes. Actually, there are no brakes. It is simplified so that you just let up, off the lever. Well, due to my "high speed" I lurched forward. And cause they don't have seatbelts on those puppies, I did the 'Howdy Doody.'

The guy. who almost met death by scooter cause he walked into the main aisle, apoligized and then I apoligized.

ME: "No, I am so sorry I was just whizzin' by like.. blah, blah, blah."

Person: "Hey, no pro- 'whizzin' by'?  he and his wife were on the baby aisle or something with their baby.

ME: "Yeh, I didn't realize how fast they could go. " I phewed, and then both of us broke down laughing.

"Whizzin' by..." he and I couldn't help but have tears well up it was too funny.

That's it.
All the funny.
Here is my game plan for allergies right now (if anyone else has better ideas, let me know:

MucinexD accompanied with Sudafed for the sinuses. And that one thing the ENT started me doing that involves little packets of stuff you put in a bottle and then drown, I mean squirt it in your sinuses, and then it should help you not pass out or lose your equilibrium due to your the pressure in your ears being off.

Oh, and I have incorporated Vapo Rub too. Under the nose to help me smell the menthol and get soothed by it and hope it open up a sliver of space so I can pretend I breath through my nose.

I also rubbed this on my chest to help with the asthma, congestion. Or whatever it is. after googling its many properties, I also rubbed it into my latest bruise. Ya mix it with salt and then....
It is supposed to heal bruises up better. I will let you know if this is true. Cause I bruise right and left.


So did I mention up there that by the time you come to grips with the scooter you are thanking just about everyone you meet in the store for the invention of the scooter and the person next to you could be the inventor of it, you show so much gratitude for it.

It is a relief.

Speaking of relief, does anyone else have some good advice or tricks for their allergies?
 I am willing to do whatever it takes to get rid of the ballooned head feeling.

Gotta give this post the gate-- so forgive the lack of fun photos and such.