Tuesday, August 19, 2014

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!!! Mad Bluebird
(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.

Monday, August 18, 2014

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.

Saturday, August 16, 2014

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.



Thursday, August 14, 2014

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.' landscape mums chrysanthemums

(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...

Monday, August 11, 2014

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.