Oh, yeh, I forgot I have Crohns-BEST POST EVER! zc z]zv/

 



Dear Carma Karren,

this post is dedicated to you. And your husband! Insert a heart here.


-Picture History: Flowers in an umbrella that belonged to a late friend. I had it on the door during a rainy spell in I.F., now it's atop of my vertical storage in my room. Living at home has meant getting compact and stream lining. Which is hard when you need everything at your finger tips whilst sick! flowers in an umbrella seemed Prednison-ish but then I saw it on Pinterest and realized there must be a world of women on Prednisone.

Back to the post......

It's cold outside!

The feeling of fall was tangible this morning..... (I have no idea what morning this was when I wrote about so don't use it as a forecast for driving to work if you are reading this while you are driving to work, stop!

 

Can you see the letters wrapped in cool yarn to spell:

 

 "F

                A

                                LL"?  

 I made that during some long night a couple months ago. Amazing what you can do with some cardboard and prednisone time on your hands.  Hm. Due to my falls in life,  I wonder if that project  workedon me subconsciously the other day and said:

 "Hey! Fall! Fall Down! "

 ME: But I really shouldn't get up and walk if I am gonna FALL! i might get another concussion or something....

IT: (that is a first. I have never written an 'it' into my story time blog posts.) Just do It!

ME: Okay


If I start to make something that says: Concussion; Whiplash; or  Esophagitis. And then take its picture and blog about it- just stop me. It isn't a topic that people celebrate like they do the beautiful days in autumn.

 

Here is some more of that yarn creativity on my part using some autumn-ish colors. It is the Prednisone Mascot for the last couple months, if you are a new Reader.

How did I make it?  Using one of my favorite artist's cards, I wrapped soft yarn around a card board template and made a stand on the back. Oh, and used a glue gun. See my previous posts on carrying a concealed glue gun.

I really need to learn to knit...............

*Okay, enough of that nonsense. I am putting pics up for you as I promised. As of this rough draft I have not put any pics up. It has been hard. I want to go back and add some to older posts. Just don't know if I want to spend much needed energy resources doing that, when other pressing matters are in front of me. Like needing to get back on face book so I know when J. has to get his pads back in to Grid Kid football people. ugh. I really enjoyed not being on FB. I guess I could use some self control and not get on there. But I miss out on major things. Like I missed knowing about someone passing away and ended up talking to a friend and learning about it. ugh. I am so sorry. I just am out of the 'know' right now.

(Below is the original, ORIGINAL  blog post which is Rough Draft ten or twelve by now. And not due to editing, cause you Readers know I don't do that. Just because it has taken me forever to write the blammuable thing.)

 

(Random flower pic of my flowers this summer)

(aren't the little red flowers so cute? normally they are in baskets but I put them in the ground and loved em."

 

*

This morning, As I eat a banana I watched Padre walk in and out of the house, the heavy front door opening to let the cold in, then shutting. I hate that door cause I just know a grandkid is going to get a finger pinched in it. Ahhhh!

My mom was getting ready for work as well. There I was, slowly eating while they rushed to get to work. I put my banana peel on the oil table cloth.  Thank you Vermont Country Store for making a durable, vintage table cloth that blends with the Fall colors.  It is hard to find good quality these days.

 

Picture history: J. taking a picture of us awhile back.Yes, my glasses need cleaning after a good cry.  I love that he took this one. Sorry if you don't get one in the mail at Christmas. It exhausted me just sending friend requests on my old facebook account. I dunno if I will get hand written letters out this year...

 This will have to do until I can get better and we take a real picture of us! Like those old Olan Mills pictures.

 

 And I really put on make-up.

 

He [J.]inspires me.

 

As all of you Readers know. And you new Readers are about to find out. Since I just resurrected my FB account I am sure this blog will be slammed. I've been pioneering immuno suppressing meds for an auto-immune problemo. Failed them after anti-bodies were produced and have been on the LONGEST stint of prednisone in my twenty years of knowingly battling an immune problem.

Yeh, I look like a chipmunk and so it is hard to recognize me.

It's called Cushing's Syndrome. Side Effect of Prednisone. Pretty much ruined my body.

But improved my

 

"Quality of Life!"

 

 

(Picture History: uh, this is my organizationed shelves so I can have my bed work like the cock pit of an airplane. Thank you, shelves and Marnie who helped me think outside of the Amazon Box. )

 

back to blogging.....

 

"Quality of Life"

 

 is a loose term doctors use to make it seem like suffering from the band aid, isn't

 

as bad

 

as suffering with out one.

They also use the phrase: Two Edged Sword in relation to being sick or being sick with low dose chemo or something.

 

*I just awoke to the burning in my esophagus. In the summer I had an infection that went under the radar because it was blamed on:

 

"just my Crohns."

While everyone was celebrating the 4th, and by everyone I mean my doctors, I was eating ice chips for

 

 two days.

 

 I had to push for an endoscopy. And that is when they found it. hm.

Oh, and the Dr. reassured Padre that what I had would clear up quickly; within a week!

 

(It took a month.)

 

An ulcer or rash like thing is on the roof of my mouth. Back by the teeth. If feels like sunburned tissue or something. New four days ago. Crohns or Esophagitis?

 

 

 

(Drumroll..... THE HIBISCUS!)

 

Monday ocular pressure began in my right eye. Can't get into the eye doctor for a few days.

It is red ripe right now. And for some reason, gummy.

Tapering off prednisone means the inevitable:

 

Return of the Beast.

 

Which is the original, other side of the sword (meds are on one side/disease on the other), problem!!

It has been some time that I had that familiar feeling. I won't go into the gory colonoscopy like details, but constantly being aware of your body digesting iteself  is exhausting.

 

Truly.

 

(another random flower photo of my flowers this summer)

 

When the bathroom door turn into a revolving door, you know you are back in the saddle of Crohns again.

 

It is making me very worn down.

 

And then there is

 

The esophagus thing.

 

 I am waiting for an appt. later. So I am gritting right now trying to endure.

 

(another over exposed picture...)

 

J. felt what it is like to have "sick days" and be on prednisone and then off prednisone.

Shocks the system.

 

Having sick days are kinda fun and then not so much. Being ill makes life one large sick day and ya just wish you could wash your greasy hair. Or your kid's. J. being sick has given him some insight to what can happen in life;

pain.  

 

And I think he can understand a bit more what prednisone is like and how horrible it can be. Which makes it so he can relate to me a bit.

 

 

(gosh darn! more overexposure!)

 

The first day on 60 mgs, he felt on top of the world! The symptoms weren't as bad, he could get air and a productive cough. Heck, he thought "am I even asthmatic?"

(kidding, I made that part up)

I was nervous for him to go off cold turkey! Yeh, I know it doesn't need a taper if less than six days.

But it will give ya a headache.

The benefits of him being on it were so easy to see. Especially with asthma. You need to breathe and that helps those lungs so much.

Would he be able to get through this latest flare?

 

 He had to go off, it didn't matter. And he felt very sluggish and in a "bad mood."

 

Baking Bouquet.

 

Susan Branch's book: Autumn had me feeling creative the moment I opened her book a fe months ago.

Thanks, Susan! These are perfect on top of a gift for some friends this month.

 

Another inspiration was Schoolhouse electrical's site.

 

"Bake Every Day"

 

(I am so going with fake flowers from now on- they are just as cute)

 

 

 it was written on a cute T-towel on the web site: I wish I felt better to do just that; bake. To make some of my favorite recipes, so the smell of yummyness filled the house, or warm bread coming out of the oven, to be cut immediately, and lathered with raspberry jam from the freezer.

 

But I couldn't can the raspberries from the garden this last summer. Sad. Having homemade jam in the freezer is the best. And is the best gift to receive. I need to make a point of doing those things. That's what being HOME is all about.

Good, healthy food.

 

This disease isn't letting me do a lot of culinary anything except maybe wrap some yarn around a wooden spoon as a practical spin, and different, way to decorate a package.

 

(Frank, the fake dog, is also a great investment I have found)

 

 

 In fact, I can barely do this- type without wanting to cry. Oh, okay. I am crying. So I will just type. I am looking at this post and it is over the course of a few days. It has taken me a long time.

 

 And a long time to get pictures on here. And editing even a little hurts my brains like an attempt at rubix cubes.

 

Speaking of long times....

 

A looong time to figure out what is wrong physically. and even though we know- we can't do much about it.

 

I guess.

 

 

 

It feels like maybe they (doctors) could do something about it.  And should before it does permanent damage to my pipes...

 

I get, that, with an immune problem, and fires cropping up all over your body at different points,

and failing all the meds out there and coming off prednisone would make it hard to decide what to do.

This Entyvio med- the new drug I have been blogging about, has not kicked in yet. If it has, I will eat your hat.

 

Where was I? 

 

Back to the original post:

 

**********************************************************



 A mist is in the air, orange leaves on the lawn, and a bright red tree is on fire in my neighbor's back yard. I love that tree. I see its progress every day that I make it to the table. I like to gauge the seasons and days by it.

 

(Picture history: okay, there is the cute line up of flowers and John Deere toy from J's days obsessing over them, oh wait. He still loves John Deere... hm. Must be a farmer thing.

What I want you Readers to get a GOOD look at, is the "screen door."

 It is only called that cause it has a "screen" in the vicinity of the Castle Era iron framing it.
The "screen door"  may as well say: ' Wells Fargo' because it is like those trucks that transport money and Heath Ledger shoots at hanging out of another truck in Batman 5, or whatever.



(don't let these little legos make you think they are weak. Step on one.  In the middle of the night when ya can't see it coming. Far from weak! )

It [our door] is HEAVY, people. It locks like it is intended for downtown in city somewhere bad, U.S.A.  I am gonna go with D.C. cause I lived back there and we needed way more protection as missionaries. Oh, wait. I had the Lord on my side! That's why I am alive! Even now!
(there is a rule that LDS missionaries can't carry concealed weapons. That's why we get beat up.)

Back to the original post....

Every grand kid wants to almost get their fingers shut in it!!!!!!!!!!!!!!!!! That door will be the end of my demise. I had several sibling moments with them

For some reason watching my folks scurrying to get to jobs, help people, all so they can essentially help me, made me easily able to envision pilgrims " docking" back east and thus beginning the book on the birth of our country. My parents have pilgrim status in my mind cause their efforts are so painstakingly taken. They "fight" to protect their family every day.


Were the pilgrims trying to coax themselves out into the cold with out the comforts that we have?(duh, Amanda, yes.)  That I have? Were they wondering why they came and if it would be worth it?


They didn't have what I have...

Like electricity.  And heaters.

 In the house.

 So that you don't have to go out to your back yard and chop wood to make a fire to cook breakfast. Lunch.

And Dinner.
Unless ya want to.

I groan when I have to open up frozen peas and wait 7 minutes while they heat up in the microwave in my Pampered Chef Steamer!


(Best Made Co. badge that is a symbol of home: Around the Campfire. One that you have been able to make using an ax to chop the wood into chords. It is so manly, eh? I love a guy that does this.)


J. would LOVE to "camp" like the pilgrims. & to chop wood like the owners of BestMadeCo.;


s
t
a
c
k it;

make a campfire;

 and he would love what this company called 'Best Made Co.' does-

Actually he is aware of what they do already.  Even though I bought something from their site for him for Christmas, I let him check out the web site. Which is what made him want something he isn't getting. At least the Grinch in me is not getting him. 

The owners are into being outdoors and I found them when I googled "camp fire pictures" for some other post I wrote you Readers. Remember?

I compared you coming to read my blog like campers coming around a camp fire to get warm after hiking in hail and you have to use those one reflective sheets to get warm.

*this actually happened hiking into Monument & The Ice Caves when I was a ten or something.

There actually was a wolverine up by the Ice Caves,



which is a stone's throw from where we put up our tents for "base camp."

So we couldn't actually hike to the ice caves until he was safely made aware of our presence, it had stopped raining, and our jeans were dry on both sides. (one side was singed to our skin and the back was frozen) Before you judge parents of this era remember they grew up without a lot of the comforts like today- like phones so light you can't keep them from breaking.

When I was ten, it was different than today's world, you see. Our parents took us on hikes without jolly ranchers in our gorp. We ate jerky, peanuts, fruit roll ups that were made from scratch or tasted like it, and if you were Lucky: M&Ms.
(actually my friend had skittles and jolly ranchers in hers. But I think her mom or dad carried her gorp cause that stuff is heavy.)

(gotta blur those license plate shots for Padre's sake... kidding. I need a Tri-Pod to steady this hand.)

Back then we had to pull our own ponchos out of our bags and continue to walk through snow and sleet like some Epic show on The Flight of the Nez Pearce. The Wolverine Hike that I am referring to was one in which we had to actually use those crinkly blankets to get warm after being drenched that are only saved for putting into your emergency kits. That you never need to use these days cause there hasn't been an emergency requiring one because you can just use your cell phone to get help.

When I was ten, it was when there were no helmets. Because our parents grew up without seat belts. We didn't know those goose eggs were actually concussions! Ya just went to your room and bawled and your mom put on an old school ice pack.

So you can see why we didn't turn around; that we still hiked the Ice Caves even though a wolverine was denned up close by. It's just what ya did back in the "olden days."
Readers, I would never endanger you by bringing a real wolverine on here. Now that Aussie guy... another story!



There was a lot more freedom to get hurt in the olden days Which is a constitutional right, right?

We went ahead, rain or shine, with our plans. Which included eating junket. And also envying the Karrens. Who are they? Well, they were the entertaining of the bunch and brought things like fresh eggs in containers from Mountain Trading stores. And had an egg toss with the older girls. I missed this as I was a younger, un-egg catching girl. And they gave up the tradition when me and my friend, Andrea, got older.

Instead of pudding or junket for dessert, they had a chocolate fountain they brought and used skewers to dip strawberries, bananas, and other fresh fruit.



I have no idea how they pulled this off. The fountain I can see, but the fruit didn't even turn brown after going several miles in the rain, setting up camp, and hiking up to Monument Cave. I think Craig had a heli drop it in the middle of the night. I mean, who can even own or purchase bananas that don't bruise like my arms with in ten minutes? Exactly.

So us other camper/hikers would be holding our widdled sticks for marshmallow roastings in our hands like beggars on the streets during the Depression Era and we'd get invited to the Marriot of camp spots and eat fondue. In the mountains. With a wolverine somewhere within a two mile vicinity.



 Get this! Best Made Co.  makes short videos of them in the wilderness, around camp fires, chopping wood, making Big John breakfasts with their dutch ovens. Coming out to Idaho for annual trips.
(yes, we are a cool destination. shh. don't tell.)

These videos make  J. go crazy with excitement for the Great Outdoors. They have entertained us while on sick days. Thanks, awesome ax making people on White Street in N.Y.

* I have to interrupt this rough draft post to say I re-started doing FB. I kept missing alerts for J's football. Even missed the fact that, this last summer, was my HS reunion. Yeh, I have been in a time warp being off of FB. And found out about the reunion when friends came to visit. wha????


I got a lot more done when I wasn't on FB.  It was a blissful respite. But it looks like a necessary evil if I want to know when J's games are or when to get his jersey cleaned up. sigh. one more password to change regularly.

back to my original post....

Were the pilgrims as stoked about gathering round the camp fire?

Did they have comfy shoes?  And slippers?. How about an actual HOME? Was the fire place home?

When I think about it, actually, the pilgrims may not have  worn slippers. Heavy duty knitted socks, maybe? Well, either way, I'm sure they weren't comfy like ours.Probably made out of burlap and some twine. Which is what I am using to wrap some gifts......



So, as I gagged down some things that are supposed to do something with my immune system, I pondered how I was feeling physically; gauging it to other mornings. This one is a bit better. But it took energy to get up there and energy to do the morning routine. Like get showered and make-up on.
I have been set back recently. That is hard. Especially during this season.


*Actually, we just read scriptures and I am grateful for them. 

 

I can honestly say that our lives go more smoothly when we take the time to read. No mater what it is
It sets the mood for the day. It erases any contention and calms down hyperness. I even pulled out a picture book from a Christmas when J. was young. He could not remember!

It was about a tree not being picked for a Christmas Tree. So he grew and was too big to be in some one's house. There is a cute little house in the book that J. and I talked about '"saving our money to buy one day", so when he said he didn't recall it, I was stunned! Have that many years passed by since I read that cute book to him? He grew up over night!!!!

Oh, Readers, Don't worry about the tree, from the book- despite seeing his children and grandchildren trees hauled off in old Chevy Trucks to become someone's beloved Christmas tree, he gets adorned by the birds and other woodland animals.

** Health News BREAL
Jaden is still hacking but able to clear his lungs. I feel bad for him. I hope he can rest up and get back to better health. We have had to do all the asthma regimen which is super annoying but helps. Darn! Asthma drags the lungs down.

When you can't breath it

 burns!

It is like trying to pull oxygen into those little grape looking sacs in your lungs and shoving out the carbon dioxide like a snow plow moving wet, heavy snow off the roads up to the ski hill.

My morning will differ from the Rude Awakening morning J. is going to have due to prednisone.
s c ,d  

 

Yup, the asthmatic had to go on a three day dose that made his cough settle down and be \\more productive; gave him a lot of pep; and, well, helped his inflamed lungs.
Because it is such a short burst of life saving prednisone, he doesn't have to taper. BUT he has to go from "being on top of the world" to nada. No prednisone. He might have a bad headache. Or really moody. Great.
 Thank you, allergies!

J. is allergic to his job (grass), which makes it hard to earn money -especially when the Dr. said he probably shouldn't mow in the next few weeks. It's that bad. Not that grass is growing at an alarming rate, it is just there are lawns that need leaves mulched and cut low for winter.

J's experience on prednisone was an eye opener for him. Albeit was only three days to my three years, he was able to "taste" the awfulness which is PREDNISONE.

J : " Ugh! This stuff is awful!" gulping down milk as if he had just been given Castor oil.
I sat there, somewhat amused to see another person on prednisone besides me,  and nodded. That little pill still tastes bitter.

This morning , up to the table, my body actually felt a relief. As if it "caught up" with everything that has been dished out to it in the last few weeks. (as I write it is a totally different story. I feel so weak. turning pages of a book was hard... and I am blogging?  I think cause I was reading in the Book of Mormon in chapter 27 about publishing good tidings of peace. And I recalled the customer service rep, Sergio, at GoPro.  thank you. Thank you for praying for me.

(It looks so humble from this vantage point. But it gave a lot of satisfaction and I looked forward to the Hibiscus blooming- cause it was always in short duration that it stayed in bloom; two days!



Who does that?

Who talks to a stranger and tells them how to get a free camera and accessories because I am sick and can qualify?

SERGIO

That is awesome. I wish some of the Pharm companies, that I have helped earn billions,  or maybe just a billion, would not only call me every few months and ask how I am doing and record it, but send me a

Go Pro. : )

Surely my life, living as a stay-at-home daughter, pioneering meds hot of the presses (Entyvio came outta Japan in May) and you Readers would love Padre live. You could hear him talk about all sorts of interesting stuff.

Just kidding. I don't need you to send anything. Thank you, medicine people, for my quality of  life. I am glad I at least got better quality of life due to your smarty pants scientists, etc. !
What would it be like to be that smart? I am totally majoring in smart when I go back to school.

too tired to wrap this post up in a smart fashion. My breathing sounds like the humidifier; wheezy. Great! I guess I had to get whatever was going around eventually. Just seems early this year. For a cold.