Sunday, November 2, 2014

Sergio, Prayers, Where the Grass is Greener, & Nordic Poles

STAY TUNED for  current PICTURES!!!!!!!!!!!!!!!!!!!! This is an old one. But I love the GREEN grass. And this saying I saw on Kurt Knudson's etsy shop page:

"The Grass is Greener Where You Water It."
I loved how green it was this year. Even the Lilac bushes were more beautiful than ever.

 Almost there with them. Lots going on. But you will love what J. and I have planned for you and will bring you as the holidays approach. First off, grab your holiday chapstick- in whatever flavor you like best, I decided Caramel Toffee would be nice; put on Christmas music, your favorites of course. But if you want to listen to some piano playing by Joseph Williams with me... feel free. Oh, and if you want to put some warm, white lights up on a twig or in your room to bring a peaceful ambiance..... feel free. Turn on a movie to make sure you are REALLY distracted and want to feel like you are on prednisone. Or how kids with ADD and ADHD feel with HDTV on. It's kinda hard to think. I actually had to pause the music and movie to talk to you Readers.... cause FOR SOME REASON I can't multi-task as well after the passed couple weeks. I wonder if I have some concussion going on... my head hurts.

Anyway.... back to my exciting intro.......:

Grab your ankle, wrist, and knee braces to help with your osteoarthritis and let's read this blog post I wrote in the wee hours of the a.m. !!!!!!!!!!!!!!!!!!!!!

uh=oh. grab tissues. i just read it and it's tear jerker. well, for me.

 Man, I hate when I make myself cry.

*I am walking down photo memory lane too so that doesn't help the tears......


Mom: "Let's get you rolled to a different position,  Amanda."

It is early in the morning and it takes me a minute to comprehend why she is saying this and even my surroundings. Which shouldn't be too hard because I am in my room. In my bed. Where I have been a lot.

 I have to blink hard in order to cover my goopy eyes.  And no sooner had she spoke, it becomes  physically clear why I need to move, I was frozen. Arthritis, in a Crohns flare, locked up joints, frozen.

 I had left the deep sleep my body had fallen into after so much trauma and had awakened to full consciousness of the pain flooded my body. As if I had just been in surgery and come out of anesthesia.

My right hand was dead numb. The fore arm is thick and bruised. (didn't see this until later, when sunlight flooded the room)  I couldn't figure our why my hand was numb; like it had fallen asleep.

 I was on my back- not laying on my arm or hand.   A hard pulse reached my brain, beat and it hurt my whole head. And body.  I was stiff.  My neck sore like I'd been sleeping on it incorrectly too- but it was straight. My spine down to the tailbone felt like an accordion; smashed and compressed. Like dinner plates stacked on top of eachother with nothing in between.

And finally, my butt. Not part of the gastro tract area so much as my butt. This is where the tears start to sting my eyes because it has a new pain. A really bad one.

I grab my mom's hand and sit up. We arranged the pillows to make me comfortable, I move some cold packs that have been underneath me and are now warm and we replace them with cold ones.

ME: "What day is it? Sunday?" I ask.  Darkness filled the outside of my window, but the lights on my Birch Tree twig have a soft glow in the room,  I tried hard  to retrieve from the brain bank  the file on what, when, how, and why I am feeling like I do.

(Mom on the sidelines with me for J's  football game. Sad and glad it is over. whew. We got through.
Thanks to Suz and Co. enter another emoticon smiley face of your own choice.

Oh, and major thanks to this guy:
(He "pilots" a lot of the boys' extra curricular activities. And he's just plain cool. Due to Suz )

Back to the story.........

Mom: "Saturday."

I take this in as I breath into the mask that is over my mouth.  This is a first; me sleeping with the mask on? Why am I wearing it? Then I notice J. is next to me. Hard not to when he is like an 'X' across my bed and the size of a large pet.

Then my mind is able to recall yesterday; that he had been coughing with his asthma a ton for a couple days, even waking him in the night. We had went to the Dr. and found out he had finally contracted a cold. With me on three different immuno suppresants, I have to be uber careful.
Even his doctor talked about what I should do. Lucky for Jaden he can go around the house coughing into his arm, or a tissue, and living a regular life of a kid with a cough. But he is contagious.

I have been too sick to keep up on my regimen for disinfecting like I had when the school year started. No way were we going to get what was going around! And we didn't. I thought we were in the clear. But the weather changes and J. is doing bike rides for a couple hours each day that are in the cold air. Cold-ish. It is nowhere near what it can be.
So now we have a sickly in the house. Just


(me! wow! I like that I am happy and smiling and I miss those glasses. They were cheap and cracked. -I was even on a dose of prednisone at this time. The beginnings of the sadness that would unfold the longer I was on it.  I loved this Christmas! It was special.

 Friends and even strangers blessed us so much this particular year-

* he was so surprised to get this jersey.

And I was surprised when a knock on our door came, it was my bishop. He came in and handed Padre an envelope for me. It was an amount of money that was given to me anonymously.
It was a humble amount. Think:  the Widow's Mite....
There were even some dimes that I counted out. This gift truly came from someone who had scrimped and saved. And wanted me to have it....
Those are hard moments when you wonder if you feel you deserve such a gift. It's humbling.

Just recalling it makes me well with emotion.

-Thank you again, whoever you are.
This was the year I came down with shingles and could not even sub teach a couple times a week.

 This is the year that an infection I had been fighting finally got the best of me and I had to succumb to its awfulness and treat it with a heavy hand.
*(strong anti-biotic through IV into a tube in my arm that my poor veins wrapped themselves around like a koala bear to its mom.
I think I was allergic to what it was made of too. ugh...... hard times. Deathly skinny and pale. Folks were worried.

This was the year that I started a high amount of prednisone, took a year to b tapered after a only to have to go immediately back up and stay up for  a long time. And the beginning of a long, long, road of recovery.

I am still on prednisone....... three years later. Still tapering from that second high amount....
I mean J. has totally changed from this picture... he is basically a teenager as far as I'm concerned!
Stop growing, kid!

* utter astonishment to have cool basketball shoes. I was stunned at Santa's helpers too!
He has grown out of these. But still wants to hold onto them....
But what if someone else could use them?
My friend kept all of his. They were like helmets to little kids; something you just held onto.
Or wanted when you graduated from HS because it held so many memories.
One friend kept her track shoes and her husband had them mounted along with her medals.

how cool....... a man who can give an awesome gift to a woman who has had lots of his kids!
It is hard to pick out a gift sometimes. Other times an item or thing jumps out at you.

This year is already feeling like a special time and I know this will be a good Christmas Season as well. I have started in early making things because of the small windows of ability, how slow I move, and, I am on prednisone so yarn and felt are my friends in the wee hours of the night.)

* A felt creation from three years ago on prednisone. Oh, my. Felt is the material medium of all prednisone episodes in my life.

Readers, after a long time on the prednisone, my body finally succumbed to the full blown nastiness of this toxic med. My muscles in my body literally gave way; they couldn't handle any more attacks without some sort of casualty.
One of which came
In the form of Cushing's Syndrome.

This is me at the football game.....

(wow! I can't recognize myself! And in this picture it seems I don't even have a silhoutte.... I am focusing very hard on J. while he is on the field. And why do I look mad? I am not. I was happy. But you can't tell becasue of the extra layers. Not very many people recognized me at the games.   heck, when I pass the mirror it takes me off guard. But one game in particular was funny. It was the beginning of a game. I was sitting there and a person starts to talk about J. I perked up. I looked down at them. They had NO IDEA that the mom of the kid they were talking about was an arm chair away!

When he sacked a kid, I clapped. Conservatively mind you! It was a good reminder about being kind because you never know if the person's mom, is right next to you.
ha, hah!

In the picture you can't tell that my body is VERY fragile. More so than three years ago. My fragile body is bundled up not only in layers of plump padding but clothing is layered up as much as possible to protect my beaten up body from the elements. The sweaters, wind breaker, hat, and several blankets still don't protect my muscles and joints. By the half time they quickly started to spasm. Especially in my back.

I had to press forward and be there for J. ! And it brought back a heap of memories. I love the game but I love it most because it is where and what he does.

  I am not embarrassed posting the photo today.
It wasn't easy when I had to see people I knew back when my jeans were falling off my hip bones.
It wasn't easy be in the doctor's office with a brace on my hand after I had sprained my wrist lifting a box off my shelf next to my bed.

Wearing a boot on the right ankle covers a bone spur and keeps my foot straight and from dropping slightly with each step. Making it so I have to over compensate or trip. Inside that ankle is an impingement. Along with ligaments and tendons that are just as angry and inflamed as my gastro tract. Thanks, Crohns and prednisone!!

(wow! I have a profile! but my body is dwindling down, down to a size 2. Then ballooned so fast.)

It is painful to put up the picture to this blog. I can't believe the transformation of my body.
And I worry that J. won't be as glad to have me putting up pics. But it is still me under all of the swelling! I don't want to care anymore about getting out of the way of people's selfies, when the camera is pulled out on holidays and birthdays. Sure, I better hide behind someone in a group line up, but I don't want my outward appearance to define me.

I have known a handful of people that act in such a way that, when I walk away from being around them, I have not noticed what they wore or how they looked. I just recall how they made ME feel.

That is the kind of person I want to be; someone who makes others feel comfortable, able to be themselves, and courageous. Brave enough to let their weakness be visible but not overshadow their whole life.

Crohns and the meds have done a number on my body.

I had to cut my hair. Again.
*this is one of the hardest things to do for me because I love being able to do my long hair. But it was falling out and clogging padres drains, wrapping itself around the vacuum beater and too hard to wash and blow dry. My hair was something I thought was the symbol of me. It was never colored. It naturally went blond in the summer. Being out in the garden was what I loved to do. Even though the sun gave me headaches, and hurt my joints, at least I was out there! And the bleached hair was a sign of it.
But because of this disease and weakness;

It had to go.....

(if I wanted I could clean the vacuum brush and have enough for extensions, I bet. laugh out loud.)

If I were in HS this could be an entirely different scenario. Back in HS I recall what made me embarrassed and now it is so low on the radar that I don't even give it a second thought or worry if someone else might.

This kind of courage didn't happen over night, Readers. I liked to take care of my physical appearance by working out regularly, eating right, and just being young. It's fun. Being skinny means you can wear a lot of the clothes in your closet for 1  plus side to being skinny.

Not having vicious and angry acne all over my face was a blessing I took for granted. I mean one or two measly zits on occasion were the extent of my life. And get this- in leaner years I only had soap to wash my face. But I didn't break out. It was a miracle. Ironically, now that I could afford good stuff from Wal-Mart, my face is a war zone.

Land mine, crater acne is my life. And the skin on my face this last stint on prednisone, which is three years now, is thick. It is as if my face is simply just swollen.
I have found that the more expensive brands of acne treatment are just that. More expensive. They have not been able to stop the river of side effects.

Don't get me wrong. I am so grateful to use brand name cold cream. When I finally could afford that and "good lotion" it was the biggest blessing. Sure I had my vaseline which I still use but it wasn't the same as when I was in HS and using the whole Mary Kay make up line for cleansing my face!

*this is the year of the shingles. You can barely tell that under my make up is a red and blotchy faced girl due to prednisone and illness.
I worked HARD to buy it and good shampoo. Biolage and Redkin being a favorite.
It wasn't hard giving these luxuries up. I take that back. The shampoo thing was a big deal. You notice Sauve versus Biolage.

And not being able to spring for mascara or under eye concealer were some trying times. I had been used to being able to get those things. But when it came time to hunker down and save those pennies for rent, food, or J.- it was easy.

(the last selfie that documented my body withering away and a neck that was to get a few more chins! And a bust line that would turn into a bust circumference. Like wearing an inner tube floaty thing kids use up to Heise. See ya old outward me!)

Okay, so letting Padre finally take my picture, if I am ready, isn't too bad. And being in public with all of my entourage of bandages can, for the most part,  be covered up unless I am really frozen and limping; off balance and joints are unstable and needing a cane.

Oh, and all my shoes? My foot and ankle brace will either stretch them out or I can't fit my foot into them. How awesome is that? Heels are out of the question.

*me in heels.

Those days are over. I can't risk another sprain! And I can't stand without being wobbly.

 I have to remember that J. is hitting tween years and parents end up being non existent compared to what you are thinking, sports and practice, and social life; i.e. Friends.

So keeping a low profile is a given but I know that j. isn't on the same level as I am. Actually, i had friends drop by and I stopped and thought about how I looked- they look the same or better, each of them aging really gracefully. And then there is the blueberry gal who gimped into the living room to sit in a recliner that is a gift from above compared to the previous one.

Tender Mercies.
*Sunny's profile & extra layer was a bit cuter don't ya think? .... : )

*A dog's double chin is just so cute. Sad this guy had to go through so much pain after falling out of a truck. The operations done by the best in the Vet field could not help Sunny. Limping along with a brace and the news that a foot and joint could never be replaced and gangrene setting in meant Sonny was put down......

Back to the original story......

After mom woke me I looked over to see that  J.  was next to me, like a little puppy curled up close to its master.  Actually, a big puppy. Like a Saint Bernard.

And he was taking up way to much of my space on my bed by sleeping in an "X" fashion. Mom helps me push his legs to the other side. And I recall that he had helped her the night before taking my BP- which was low. And how they helped me into bed and took off my braces for me.

Why did they have to do this I thought quickly.

Mom had touched my foot and I yelped with pain. The top of my foot felt like it was broken.
and then
 I recall the previous day's events....
I remember a phone call to a really nice service rep. and then

falling..... in a store! oh, no. oh, no.
Oh, NO!!!!!!!!!!!!
I close my gummy feeling eyes and let the ramifications of going into the dumb store to return something and falling. It didn't embarrass me. I was not able to gauge my distance from the wheel chair behind me and the display table in front of me. Even with the one trek pole it was not enough to catch me.

I crumpled like paper being wadded up to toss in the trash can.
My butt hit the metal feet of the chair. My tailbone tried to get in there too.
My right hand tried to absorb some of the fall. Thank goodness I had a brace on it too. But now I knew why it was swollen. And why my forearm was swollen and the capillaries busted.

Boy, I didn't need that to happen.
Because I am miserable. I am trying so hard but one thing after another keeps happening.
The truck striking our truck just a few days earlier when I'd gone to the hospital late at night after an MRI late at night that showed my knee was sprained from simply normal every day stuff.

The fact I had spent all afternoon and into the evening getting to appts. and pictures done and then the fateful trip to the hospital for labs so that my GP had everything in front of him the next day.

  I recall the oddness of the truck that struck our truck outside of the hospital late at night when I went to complete the last of my Dr.'s orders. How could things get worse?
 Why was what I was feeling as my mom helped me

And now on top of it all: the esophagitis,  the disease, arthritis,
then my head and neck being shook like a rag doll. Needing Nordic poles to get out of bed and walk.
a migraine headache from jostling that concussed brain of mine.


I had fallen and hurt myself badly, Readers!

How much more of this is there to my story??

*I am getting too sick to edit, readers. Ready or not, I am uploading the rest of all this.*

When I try to walk it feels like I am one of those guys that climb up frozen water falls. Ya know how they have to use picks to pull themselves up and wear cramp ons to keep their body glued to the ice sheath?

Except they are vertical. And I am trying to defy gravity too, and slippery terrain just on even, horizontal ground.

So I got thinking......... trying to figure out a way to make my life easier. And so I don't burst the veins in my right wrist and forearm.

Inspiration came:

Trekking Poles

I recall that I saw Trekking poles- you know, NORDIC skiing somewhere.. so I got them.

Norway is our Christmas theme...
Because of the bruising on my hand I thought, hey, let's try these cause I can't walk well and after the truck hitting us. Well, it is like putting clamp on s on my arms and I can pull my way forward.

I hate to say this, but it was pure genius of me. It worked. I can trek with them.
And look hip and athletic!
 Kidding. I am far from looking like the athletic trekking enthusiasts.

When I
trek, you can tell something is up. And I am not the skinny looking, green belt walking athlete. I look like I need them more than a good way to burn extra calories by involving the arms in the trek in the mountains.

People might think I am getting a jump start on skiing.

hey! that reminds me of my alarm. Remember  that is set to go off at the time that J. got up to ski at Ghee last winter.  So now when my phone alarm goes off and I have to hit snooze and I see: "SKI"; well, I really get to pretend to do it now. Cause my Nordic poles are now next to my bed instead of the cane.

Heck, I look like a future winter Olympian.

Got the boots for the fasciitis feet even. So I am set.

I am joking with all this. And I am glad I am now able to feel funny. Because I have been very not well. It's sad. But we are happy. J. said the other day, on the way to his Dr. appt.

"I feel really happy."
The sun was shining and the windows were down and sun roof open letting the sun beat down on our heads. Yes, I am happy too. At peace. Despite my body in short: crumbling.
How can things be wonderful at the same time as something horrible?

Let me tell you another chapter from the story of our lives.....

rewind to the other day and me on the phone with customer service. My phone on speaker so Jaden can hear and learn what the man is saying, etc. The man attending me was named, Sergio.

Sergio: "My family and I pray every night."

Me: Silence. -Oh, and a sheepish guilt feeling that a customer service rep did a better job at family prayer than me and J. J. looked at me because the rep. was on speaker phone.

Sergio: "We will put you in our prayers." he said with his distinctive accent. "My family, we have seen miracles. Family members did not have what you have but cancer. And now it is gone."

ME: "I don't know what to say.... that is so nice. Thank you. I know that prayers help."

Sergio: "I can tell in your voice that you will get through this. One day at a time. Just one day. Your son sounds like he will help you."

Me-- I looked at J. and was astonished at this man's perceptions and it almost made me weep because he is right, I have the bestest son/pal (J. once called me the bestest mother pal) on the face of this earth.

Sergio: "Okay, I have made sure this is correct (our business) and this is what you do to go to the sponsor program (he tells me more info. that will be exciting and will tell you more about that later)
so you are set, Amanda.

ME: "Thank you. Thank you so much."


I sat there and thought about the email from my friend in Gautamala who works in a Temple there.
A temple belonging to The Church of Jesus Christ of Latter Day Saints,

Friend: "I put your name in the temple all the time. REmember that thousands of prayers go up to heaven for you."

This is not the only friend to do this. My name is in temples across the globe and here in the U.S.

My right hand is twice the size as my left right now. Why? Oh, yeh, I fell.....

I didn't scream like I did when Padre's truck was struck the other day. The day I was looking back at my mom who was getting my purse out of the truck and then lightining felt like it flashed in my brain and the truck lunged forward. As did my turned neck. uh-oh. Concussion feelings filtered into my brain. Was it a stroke/? Earthquake? Car pop out of place? No, we were hit by a truck! It moved our whole vehicle. Hard. Why? Why did this happen? I was already not well.....

I am tired of typing. Places are throbbing. My esophagus..... my bicep. My neck is stiff. Even though my Dr. cried with me the other day and put shots in my neck and back where the hit had caused more pain. And around the muscle of my esophagus where disease and fungal infection feel like it is eating it away. And the medicine has been working on it for a week and it is still there....
And even though I had my third infusion, I didn't and don't feel the awesome effects of a med like I did with Remicade when it took a day and I felt the med tell my immune system:
"Knock it off!"

 And it listened!

I am recalling J. going around taking pictures of things for me yesterday. That was really sweet. And I am recalling how his hacking cough was so bad that the Dr. put him on prednisone! For only a couple days. ha. ha. Last night he was so wired and not due to Halloween candy!

"How do handle this? " referring to being on prednisone and so hyper. It has made his cough die down.

Me: "Well, I do projects to calm me down. You can roll expensive yarn around some cardboard to make crafts or paint the letters for my gifts/ packages for the holidays, or continue to watch Studio C, or continue to annihilate that cardboard box with your nerf swords because the movie Captain America makes ya want to do stuff like that."

J: "I will just stick to ruining boxes."

Me: "Sounds good"

Since Jaden is sick and hyped up on prednisone.  I will wait to upload his pictures. Actually, I can't I am too ill to go any further. Sorry this is a run on post. Struggling. J. will have to do it for me if I can get him to.

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