Tuesday, September 30, 2014

Entyvio, or No?

So the physical update:

-HEARTBURN
 
I would use the sucralfate but unles I want everything I ate turn to cement...
 
Headaches
Migraine (two. One will come on in the middle of my forehead like the day I had the infusion. It feels like a mallot to the forehead.
The other one is over the right eye. It will trigger if I read too much. Watch something too long. Study something too long. Look too long.
 
The other day I googled info. about it and it said it was probably due to a strained neck. So I massaged my neck while I held my other hand over it so I could read the article.
 
Did I mention heartburn?
The last two days I also have felt more of the esophagitis situation. Which was kinda doing better and must be flaring cause I am flaring.
So I guess I will disolve some sucralfate. Does any of this have to do with the whole infusion, or no?
I have no idea. I am just throwing the info. out there.
 
I also have had waaayyy more weakness in my body. Feel like a set back has occured. I couldn't even get to an appt today. Had to cancel. But I need to get into the Dr. and let them take some pictures of my leg that has been hurting and see if I have fractured it or something. I have no idea.
 
I know I haven't been pushing fluids as well and that can make ya miserable.
Staying on top of hydration is the single, biggest concern in my health regimen.
 
Now, I am gonna start a new post like a fresh piece of paper.


Sunday, September 28, 2014

On a Lighter Note




So I looked over my last few posts and we need some

light heartedness.
 
But I can't give it yet.

I was too tired to finish up how the rest of the  infusion day went. - After the kind nurse held my IV in place and then I left the hospital with Padre....

- for documentation purposes on my 2nd dose, I left that place like jello; prednisone veins caused bursting in the IV arm and capillariess up my right arm- leaving it to hurt pretty bad.

As I tried to walk down the hallways of the hospital with my cane I took note of everything. Actually, my cane pulled me along! I went slower -because I had to.  No amount of mind over matter was working, Readers! I almost asked for a wheelchair when I came upon an open doorway but the staff room was empty! So I took a rest and walked slower. And I kept my head high.
(which was hard to do. I was praying it wasn't permanent. And if it was, that it wouldn't get worse and I'd be using my finger to navigate a big huge wheelchair. ahh! Turns out I improved a bit. Yay!

 

 
(Glad those football pads provide a multitude of protection- even from cameras!)
 

Barely outta the Infusion room I came across a person in scrubs. Said hello. REally said hello. Met the person's eyes and smiled. The sun was streaming through the windows and as I came upon two nurses ahead of me in the hallway. They also met eyes with me and said hello... and something else because we had an exchange of niceties that I can't recall but it was in essence words to cheer me on. I was limping, using a cane, and obviously must have looked in some serious need of rooting a person on. I appreciated that. (Because I haven't quite yet embraced my handicaps and limitations. Yes, I high five others, usually grandmas, using canes but I haven't felt for a minute that this is what I want in life; to lose or become limited in my abilities. Nope. )

The person they were helping was in a wheelchair, connected to some serious equipment along with the IV- so I was prepping myself for my first glance and smile with this person. When I reached the point where I passed the trio, she looked up and expected me to not acknowledge her. Or at least it seemed.

Her eyes were the the last of the light in a shell of a body that seemed to be on its way out. So I smiled at her and said hello and to.... take care. And nodded. Continueing on dragging myself by a cane down the hall after the Entyvio seemed a heck of a lot easier after seeing this woman.

Wow. Is this post not lighter yet? It will, hang on. Only five out of the twenty plus encounters didn't respond to my 'openness.' The lady was dressed really professional, seemed to work for the hospital and was talking to a subcontractor or something about the lay out of the floor. I guess. She was pointing out the poisiton of the elevator in conjuction to.. whatever... why am I adding these details?

Someone grab me a journal.

Good grief. I guess I am recalling all of it with A LOT of clarity because that infusion was poignant. Everything can change on a dime. +

I walked in somewhat crippled and gimped out officially crippled. For whatever reason. I mean, right now, as I type, I have soaked a foot in epsom salts, heated up a calf muscle and then the foot because my legs are killing.

Another note to the prednisone community on here- watch out for long term/ no turning back damage to tendons and ligaments. Foot pain. Ankle pain. Fractures?  Loss of elasticity? They feel like glass. There is some throbbing going on and I pivoted earlier and it felt like I almost broke my leg below the right knee.

Right now I also have to strap on my boot to keep the left foot stretched out. Both feet have fasiitis.


Okay- ready for the light part? I managed to get to the lobby and sat down where three people had to take in the second time I cried. First of all, it was so pretty outside. High 80's, flowers still bluming, people talking and walking. A person leaving the hospital with their flowers and such with them as they waited for a ride. Green grass. So this is light, right?


(how long since Padre has graced the covers of my blog! He is expounding on something technical to do with computers or Apple upgrades, or something that is waaayyy over my head under the circumstances. Heck as I took pics of the flowers for you I struggled to even hold the camera. That's some post Entyvio weakness, folks.  )

Well, I did still feel pain and I had to wrangle on my ankle braces for extra support because that trip from the infusion room was harder than any other I've had- walking wise.

There is a fountain that I concentrated on in order to endure the pain I felt and the headache/migraine. My whole existence felt on a basic level. Concentrating on breathing. Noticing all that it took to get that oxygen into my lungs real deep and then slowly let it out.

I just stared at the water go over the light orange rock. Entranced by this rock's..... beauty? The water's..... continual burbling over it? Pretty zen, that is for sure. But I was holding onto the sight like it were a life jacket or raft or that round thing they throw in the water when you are overboard.

 DAng brain. Forgetting words.



 I took it in like a museum painting. So here was this pain in me and then this beauty and with it appreciation for life.  And the tears came again. Things get lighter, hold on.

They [tears] washed over my cheeks like that water on the rock; down off the top where it glistened in the afternoon sun and then fell into the pool below. I didn't full on bawl. 0Only a few tears actually escaped.- And I had some make-up in my purse to help with the mascara lost in all of the day's events. (which is highly unusual but I have mascara and so I have to use it,. right?)

Three folks next to me didn't seem to be bothered by me. They were wrapped up in their conversations and there wasn't the acknowledgement I'd felt with the others I'd encountered. Maybe it was because the Infusion Floor is next to ICU and so there is more of a reverence?

Anyway, I saw the truck pull in and I headed outside, opened the door and

 

(once again- random flowers by a nice lighting addition to the front yard. Fun for cool evenings and lit up the yard for those coming and going in the dark. Like me. From a neighbor's house or whoever had to turn the water off if it was still turned on. Worst feeling. When ya are snuggled up for the night and the sound of the water on- just the timer shut off. doh! WHY did Padre not put in a sprinkling system??)


Could Not Get Into the Truck. Wah? My right leg gave out like  person who is hypnotized falls back into a sleep at the snap of the hypnotist's snapping fingers. Gently it just gave way and I fell into the seat.

Now, Padre had texts with me through out the whole afternoon. And I noticed that he was a bit emotional behind his darkened glasses. But it was business as usual after i got into the truck and back to real life!

That is what is so weird about illness; you can't bring anyone along for the ride. So much happens that I have to keep on top of and, yet, not let anyone feel the stress of it. To get it outta the way so that I can just be Mom. Make meals, do laundry, nag about socks on the ground, etc., etc.

Kids need to hear the truth- be honest with them and see that you are okay. But it amazes me about what "goes down" in an appt. or an infusion that only me and the nurses/doctors/ janitor really comprehend. Then I have to tuck those things away and carry on when I am back to "real life."

 

(This is why I have to tuck things away! I gotta root this kiddo on. And, believe me, I had no idea how handy Coach Guilford's pep talk have come in handy when trying to give them to Jaden. Whew!)


And all I can remember is him telling me about jpegs and gigs, and technological stuff. And how he'd been looking At Bish's RVs over at the mall and that they had one that he thought would be perfect for a family member and the dimensions to it.


 
(waiting for it..... they like to kneel while they wait for the other guys to eat up the clock in a huddle)

That's right, Readers. I have inherited my gift of, "lots of information to give" from the Padre gene pool. I closed my eyes and nodded but declined the offer to go look at something to do with the technology sermon I was hearing, but I had to get home so I could be there for J. after school.

I suppose the moral of this post is that if you want a lighter read, the hospital isn't probably the best place to start. Whatever funny I had to say, I'm sure will end up in a later post.

Friday, September 26, 2014

Life Can Change in a Minute




(the sun setting in Island Park
A person's life can change in a minute.

I am not the same person I was this morning
(when I posted last and said so confidently: LET'S DO This!

After receiving my

2nd loading dose,

 after 20 years of dealing with Crohns (and whatever else);
suffering devastating and body altering surgeries,
pioneering other biologics and TNFs,
then, for the ultimate kick in the teeth, staying on high dosages of prednisone for almost 3 years while trying and failing everything there was left; - I changed, again.

Today's infusion brought an overwhelming mix of emotion, pain, nausea, and a "time still" in life.

Just that word, life, is the reason I have searched the halls of hospitals, clinics, specialists, and God.
(and I guess the reason that I am blogging while feeling very much devastated in body and mind. But I have to document it for others that might need help in their decisions or during their own... uh, trial? Or their own prednisone melt down or go through something they can't make sense of at the moment.... ?)

(Me, eying the cut up Birch tree from my Grandfather's yard. Anyone see a gift or craft? I do!)
 

I went into the infusion slightly light headed and dizzy- possibly needed more fluids. Padre was my ride as I told you before and he managed to squeeze in all sorts of odd jobs in before it was down to the wire. So I had to hoof it through the winding halls, up the elevator and around the ICU floor to check in. Felt flushed and faint.

Padre got me Gatorade and after the secretary in the check overheard my cell phone request she jumped up, got me an orange juice, some Saltine's, and a graham cracker Keebler packet. I fumbled to get the saltine's opened and flipped to a page in my magazine about a cancer survivor.

She was a black woman who had breast cancer at the young age of 26, or so. The Phd giving quotes said that [she] was a different person than before cancer. Her body was a physical manifestation of the "war" she had been through. Already the salt was coming out in my tears.


(loved these Salmon colored Impatiens beneath the Little Leaf Linden out front. Fall is underway...)

YUP. She may have reconstructed breasts but I have some marks of my own and I feel I could relate to her when they talked about the real "journey" of survival came afterward; when you faced life after becoming mentally and physically altered.

Stats showed that many survivors suffered from sleep deprivation at 5.5 years afterward. They suffered some other noteworthy things that I was deeply empathetic toward. These big gun drugs change everything.

I know that when J. said that he identified with "a different" person coming back from a hard flare to a brain injured person that I can't recall his name (not chemo brain but predno/post concusiion brain)
it was obvious and apparent to a kid that Mom had changed.

I had brought other mags to tuck away my fear, and I enjoyed the positive conversations I had with each person I met with that afternoon. I made a point to try to calm down, down A LOT of fluids to pump up my veins, and try to think PAST the infusion.

 
(this petunia's root base was dried up from- lack of water- so I kept it lacking and stopped showering it with H20. The leaves started to turn yellow and orange and I one day.. I saw a BUD,  It bloomed at the last minute..... Crazy flowers. There is a moral in that but I am too tired to put it in. Getting pics up is a huge deal. Thanks Padre.)


A male nurse with a German accent came and escorted me to the infusion room. I left my Grandinroad Halloween Catoloug with the kind secretary.  Drake (fake name) grabbed my heavy silver bag, drinks, and I think I just carried my cell phone to the busy room next to doors that opened only to surgeons and nurses dressed up for surgery. My stomach flips at the sight of those paper uniforms, caps, and the anonynimity. Warm eyes brighten up, however and so it isn't ALL bad.

Immediatley I parked myself in the "stall" the only thing separating me from others- the curtains. It was really busy. So I quickly grabbed some wipes to do a good clean down- the student nurse said she had done it but would do it again. I sat down and nervously turned on the TV to some show about people who go to jail. Needed distraction. Then I was sickened by it and was needing MORE distration as the left arm vein rolled out.



Turned it to a survivor show where some guy had his buddies, who each ranged from Green Berets, Navy Seals, to a guy who looked like Seal- minus the scars. They put a bag over their friend's face and flew him from point A to B which happened to be in Finland and dropped him off with nothing more than a leather tank top and shorts. hmm. It was called You're Screwed. The nurse was struggling with my right arm and a vein blew after we thought we had it. The shows title seemed to be a foreshadow.

So I turned it to CNN to see that The President had made it clear we would stop these threats or something and here is where it gets fuzzy cause we have to go for the painful spot on the base of your thumb. The nurse sprayed numbing spray for good measure cause I think she was sstarting to get nervous. I was starting to wonder how we would get this med, Entyvio, IN me.

 

 
(My fav. plant settled down for its nap at 2 pm......)
Note to long time pred users: it attacks your veins. I know, I know. I say this all the time. It gets the skin. It gets the muscles. It will probably rupture my achilles after doing a number on my tendons and ligaments. But when it blows veins..... there is a feeling of helplessness in it.

Did I mention she was using a NICU needle?

 "Lu" (I picked the spelling - she went with that for her name for the blog) finally got it. Then it started. I think I set them behind by a bit.

I want to say that it is my son who I thought of when it was "too much." By that I mean the wave of the new med dripping into my body. Slowly the news feed about how much precaution the whole US was taking with the threats over the net to have rogue, Lone Wolf flea bags to do whatever they needed to in order to shake things up and scare us, got fuzzy.

Due to the fact they had to numb me, where they stuck the needle-felt like a dental appointment, when they shake the needle deep into your gum. It stings but then feels like a tight pressure is starting to build and overtake that area.

So my wrist felt like a cavity filling. But it was in.

When I felt the onset of a baaaddd headache I tried to reach my Dr.  No answer from his nurse. So I just carried on. Then I started to get emotional. Then things went from bad to worse in the 'I feel really crappy department.' For one I had to go # 1. And I was getting some cramping. I hated to bother anyone cause it was busy and I sorta wanted to just take it all in.

i cried.

It helped.

I finally caught a nurse in passing and she slowed it down. The other one helped me to the bathroom.
My IV slipped out, almost losing the vein with just drops left to get in. Expensive drops!!!!
But the nurse delicately put it in for the last tsp. She held it in place for TEN minutes.

She cried.


I cried.

Wednesday, September 24, 2014

The Sock Guardian & Entyvio Take Off!!!!

 

Readers, I have the most elaborate system to protecting socks on the planet.
In the laundry room is a bin that says:

HOT WHITE SOCKS. 

In our rooms I have a mesh bag hooked to the OUTSIDE of the basket for.... socks....
In the family room there is a basket with this on it:

DIRTY SOCKS.

The other day I saw evidence that he'd disregarded the sock plan of keepin socks TOGETHER and CLEAN (once I can get to laundry- he, heh. ) and ya know what I found? A couple black wads that looked like some kid had cozied up on his bean bag and took them off three feet from the basket!

How hard is it to put them away or in the laundry? So I resorted to lectures, etc. And decided that
at night I should teach J. to find what he needs for the next day so that he doesn't have amoment like this morning.

I knew it was over something big when I heard: "Maaaa ooooommmm."

ME: "Yah?"

J: "Where are my Grizz sock?"

ME: "I don't know! Did you put them in the sock bag so I could wash them?"

silence.

clock ticking. no appearance of kid.

Me: "I thought you had your socks out already- didn't we dig some out of the laundry last night?"

Him- "Yeh, but it's GAME DAY!"


(Fellow Teammates saying their prayers, I guess. Kidding- waiting to make a TD!)
Me: "Well, not til after school! Wear your white ones!"

So he does.

On a different note, I am feeling better a bit today so guess what?

yup, Entyvio!

uggghhhh. my stomach is rolling. I put a comfy bra on my innertube bust (thanks prednisone!), a shirt that I don't care if they get blood on, and have Padre driving me. Grrreeat! I gotta be honest, I don't look forward to the sore throat, sinus infection side effects. Or possible nausea. Buuuhhhh.

 
(Another random picture. This is Frank, our dog. J. and his buddy will move him around the yard. to keep things interesting when we look out the window at breakfast time.)

It helps that I just got a letter from J's teacher that said some good things about him. aww. that makes me think of him and I have some back ground Danny Mackaskill bike riding (On The Way Home) on because it makes me think of J. and it makes me excited and look past the next couple hours and toward something fun.



Like that kid getting home from school and seeing his face and then football!

 Let's DO this!

Now where is the other sock to this smart wool one...


Tuesday, September 23, 2014

Entyvio Day 9, FB Practice & Gratitude


SKIP DOWN to the POST about INFUSION DAY to get correct timeline of my posts. I had to hurl these other posts onto the blog like getting rid of provisions that are weighind down my ship/handcart/or whatever. They are thoughts that I am not even going to edit. I never edit, what am I thinking? Fever today- sorry folks.



Today was a a monumental day. I actually made it to J's FB practice.
Dropped him off, ran two errands, returned and sat on the grass for a bit.

Readers, I was a bit worried if J. would be embarrassed. I mean I have changed a lot from the woman who rode bikes with him five years ago to and from flag football practices on occassion.

I have to admit I love watching him play football. Despite the attempt to not cheer much, I clapped and whooped it up a bit as they did the final drills. Simply amazing. I don't know if the Entyvio is working, the fact I had forgotten to take Imuran for a few days, or I am overcoming the Mono.

Either way I was able to 'get out.' It felt so good. The weather was hot and muggy so escaping the hot house (Padre put away the air conditioners when it was cold last week.) was a relief! Usually J. goes to practice with his friend. That is a relief too. Lots of small mercies happening in our lives.

Thanks for your help. Growing up I had a good set of friends and that made all the difference in my life. J. has that same thing and it makes me so grateful.

We were starved afrer practice and were able to come home to left over funeral potatoes and I made a salad from the fresh head of lettuce I picked up a few days ago. I had to go to a more expensive grocer's but I am so grateful even for that. Glad the Dairy has a drive thru so I can whip over there and grab some milk. Again, it's expensive but when you are sick, navigating Wal-Mart is or Winco is majorly overwhelming.

There is nothing like a home cooked meal. "Real Food" as a friend calls it when she is able to cook a healthy/delicious meal for her husband and fam. Yes, real food is a blessing. I ate it slowly. Enjoying the salt I had sprinkled on it. My mom knew the night before that we needed a sit down, pray before eating, kind of meal.

 It filled us up and we were able to finish off the night routines: J. soaked sore muscles and feet in bath, we talked, watched video footage of mountain biking and read.

Did I mention that before practice we had a miny 45 min. date? We quickly looked at the local bike shop at mountain bikes. Just for fun. J. told me the in(s) and outs of disc brakes, compression, and other things I have forgotten. I just smiled and listened to him and his excitement over all sorts of bikes.

Again, I feel a huge gratitude for the day. A person who I spoke with  on Sunday asked if he could put my name in the Temple- I told him it was probably already there but he works at the Idaho Falls temple and I told him to do it anyway!

It is working because I even watered the back flowers..... they are on their last leg of their summer journey with me. J. did the front for me when it got to be too much for the day.

Yes, heating up food in the microwave after a few errands, watering, and such can be really hard.

My feet are still hurting despite the stretching. With the help I have recieved I honestly am able to tackle the side effects of Entyvio, the tiredness, the muscle weakness, lower right quadrant pain  (Crohns Disease typical spot for pain)  and so on.

Relieved. Tomorrow will be another big day.

My Latest Picks

My circumstances have made it so I can research. What do I research, Readers?

Everything.

And I have been able to 'test drive' anything from make-up, to cuticle care, lotion to fans. I am amazed at what I have learned. And grateful. Whether on a budget, some extra, or nothing I have found things to bring relief.

Since I am up I will share my tid bits.

First of all I want to say that I know what it is like to not have the money or choose to not buy things so I could save money and go without some things. When I was younger and healthy it was easy to pull off.

I don't know what the answer is as to whether one should forgo all these things or that it is okay to indulge a bit. Dry knees and elbows are at the top of my "Do not want" list.

Vaseline was the answer to everything when I had Zero dollars to go toward

One thing I failed to do as a teen was  to protect my skin. I fake baked a few times and baked out back on a towel listening to Z103. Big mistake. There is nothing that can turn the tide for your wrinkles. (this is assuming we are all not going to do surgery.)

Oh, how I wish I had headed my really fair, strawberry blond best bud, and used sunscreen.
Nothing I can do now but wear SUNSCREEN. Neutrogenia is the best non-greasy brand I have found. It is pricey, yes. But worth going without a candy bar or any other vice to save up for. Picking up pennies, etc.

Right now I am really glad for Mary Kay acne treatment gel.  Prednisone makes me perpetually acne ridden. I didn't have acne in HS so I guess this is making up for it.

Before I could get the Cadillac version of acne help, I used a bottle of whatever Jessica Simpson and other pop stars use. This bottle was one my sister left when she got married. Several years ago.

Equate brand of black head wash is exactly what is needed. I bought it for J. and used it myself and to my surprise, it worked. I don't have black heads, but my pores were HUGE for some reason. Maybe because my face was so swollen it stretched them out. That little inexpensive wash shrunk them.


I recall using baby lotion on my face when J. was tiny. I couldn't afford to splurge on expensive lotion for myself when I wanted my kid to smell like lavendar!

Wet-n-Wild eye liners. They are a dollar. They last forever, don't break like the ones that twist. They are great.









Yes, I have learned that there is really not a product that can reduce wrinkles except keeping the sun from burning my face, etc. Yup. I was dumb and tanned all day with baby oil on.

That said, the biggest factor with my skin now is that I didn't use enough lotion during all my dehyration spats and so now I have the leapard scars to prove it. Not good. But it couldn't be helped much.

Mojave Tangerine and Menopause




 
Here is the plant that rocked the front yard this summer:
 
 
The Mojave Tangerine


or it's difficult to say but make you seem like a horticulturist if ya learn it;
 
Portulaca Grandiflora.
 
 
Tonight I pulled the plant's designated name out of the pot to put in a journal. (The equivalent of wearing the sales tag on your clothes) or something so I could get it next year. I tried to find another picture from my stash and of course it won't upload.
 
So I resorted to reading about a lady who planted hers and found that it closed up shop around 3 pm too. Yes, all plants close up at night but this was ridiculous.
 
(Cathy @ crazycontainerct.com has some really good ideas. I have decided to only plant fake flowers next year. And the ponds on her post look amazing. J. would just fish with his friends in them and keeping a pond is not for sissies. Which I'm. )
 
So if anyone comes over at night, they don't see the cool plant you have cause it went to bed real early. Like, just let the nap go into the night, early.
 
It must have Crohns.
 
She planted hers in a doubled up planter and put these huge elephant ear plants next to it. In black.
 
 
The color scheme gave me such inspiration that it helped me decide on paint for my room,
 
some cream eye shadow from my sister's Mary Kay stash (Apricot or something)
 
 
(whoa! that is a huge copy! And it doesn't look that color.... hmmm. I like it though.)
 
 
AND
It is even giving me some inspiration for Christmas Colors.
 
Yup- all underwear and socks will be in this color.
kidding.
 
Actually I saw a picture with tangerines mixed with oranges, peacock feathers (actually it looked like three real ones in there), and fresh, green garland. In a large house that had beautiful light colored wood with a nice tangerine drape separating one room from another.
 
So far my Christmas decorating wrapping/gift ideas invovle:
 
-Cutting candle size portions of the tree that had been in my grandparent's yard.
 
 -cutting perfect slices of my grandparent's tree that they had cut down for momento decorations
- finding and ordering newspaper (in Japanese)
- finding all my twine, rope, crafty stuff & thinking of something creative without googling or using pinterest.
 
- calling a sister for a special soap order
 
- making a garland for the top of the mantle downstairs
 
Scrapping all these ideas and just  wrapping a few gifts in the cuteness, throwing them under the pine tree and calling it good.
 
-
 
What does this have to do with menopause?
 
Nothing.
 
Only that I feel like I am going through it with the flashes of hotness and wonder:
 
"Is it the Entyvio?"
 
 
********************************
 
Well, here is some random fun. J. came home from school, ran outside, sat on the swing and intercepted a bee.
 
After removing the stinger with my fingernails, we made the baking soda paste, gave him a benadryl and then put ice over the swelling ankle.
 
Before long he was bored and given the go ahead to go back out.
 
Then he woke up in the dead of night due to an itchy, swelling ankle.
 
Great.
 
Big game tomorrow. That ankle needs to fit in a cleat.
 
 


Entyvio Second Infusion Day- Postponed


Couldn't do infusion. Symptoms kept me from doing it. Which is good and bad. I need that stuff. It helps. Yes, there was nausea.

Why am postponed? Sick. Feverish. Hot. Clammy. Nauseated.

I have some great posts I worked on and wanted to take pictures today, make a cool wreath,  (okay I wanted to make several)
But sickness knocked all that away.
Despite it, prednisone saved the day.
What happened:
Woke up. Frozen.
And P. S. my computer has Entero D 68 or something cause it is is shutting off all the sudden. Almost lost all my stuff on it.... What is up? All I did was google how to make felt flowers...

Okay, so this morning. Alarm tells me it's time to get up and SKI! (programmed up at Ghee. - Grand Targhee with Jaden.
I sit there. I can't move. J. gets up and gets ready, grabs breakfast and bolts. Great.
Stuck.
Can't get the a.m. prednisone in me until noon.
Have weird dream that I am still working at the Investment Firm and need to get to work and in the dream I am not close to work and have a long commute and so I try to find an apartment that is closer. Feels real. And I have to make sure J. has a room and then I am fighting to get UNFROZEN.

Eventually I do. I ring Padre and tell him I need water.. Then my schedule is off. I am able to stand, then walk, get ready, water the flowers, talk to friends, find out that one is sick. She teaches. Great.
She has been sick two weeks...... is it what I have?

Right now.... my brain is on fire. I have had a sore throat for some time due to the infusions. Used Sucralfate to help coat the throat. It is chalky. Sorta helps. But it has a bad side effect. Binds you up. I can't eat much but I look like a balloon. Seriously. In church yesterday I had my right leg sorta seize up. Bizarre. Muscles are really effected by prednisone. Or the Crohns is attacking.

I GOTTA GET BETTER! So I did a lot of disinfecting. And tried to get some laundry through.
J. probably is the only kid in football that has his mom clean his mouth guard daily.

Is anyone else dealing with four times the amount of laundry? I am so sad to hear that so many kids at school have runny noses, are hacking/coughing, and fevers. The teacher friend of mine told me that it is the first year she has taught that no one has given Lysol wipes and she has had to take in her own.

That makes me feel bad she has a bad first impression because I know A LOT of women and fathers who volunteer, have volunteered, and do so much for J's school. Lots of us have either had to get jobs, or have gotten sick (me) and can't be there. I feel bad. I offer to do busy work for her in when I can't sleep. But sometimes I can't move.....

And who knows what I will feel like after trying to save the universe today.

Other symptoms I had today: I decided I needed to cook. It is getting chillier and J. comes home from football needing a good meal. I wash up, make soup, grill chicken, make rice in the microwave in my awesome Tupperware steamer and throw it all together.

Using veggies from the garden I make a salad I know he won't eat except for the croutons.
The peaches a neighbor brought over are needing to be canned. So I peel a bunch for desert.
Padre has an allergic reaction to it. Give him benadryl.

We have family night. Talk about the lesser known stories of people who came from England, got stuck in a bad snow storm cause they left late and there are heroes.

Here is one: A family comes across the plains in a cart. The parents get sick. The 13 year old has to be the caregivers and pull them with the help of a younger brother. And he has two other younger siblings who are just tiny. The Dad is in the cart..... snow is falling. They come to the Platte River. Some tremble at the thought of crossing it.

Out of no where the father has strength. He crosses it 24 times. That night he dies.
People! I mean Readers! Can you imagine the lives he saved? He gave his life. I wonder about each person he carried across. His son, the 13 year old, the son almost my son's age gets his family into the valley. They were rescued. They suffered so much.

Another story that inspired me today and pushed me on..... I have no idea who she is. I only know of the story being told to me years ago. Whenever I do laundry and it is hard to lift and bend and the concrete floor is hard on my feet and there isn't a lot of natural light in the laundry room (hence my wish for a Martha Stewart laundry room that is huge and spacious and lots of windows with natural light) I think of a woman who came to America, I believe she was of Asian decent. Her son tells the story. She took in laundry to help with money. She ironed others' clothing. Painstakingly laundered other's laundry. So her family could have a better life.

Who is this woman? I don't even know her name but I think of her when it is really, really hard.

I am thankful for the blog by Susan Branch. I go there and feel at ease. Why? Cause she talks about things that make a home.... she talks about the sound of her metal measuring spoon clink against each other as she measures out salt, sugar, or possibly flour.

Inside she feels that she is fulfilling her existence and that is to be the 'heart of the home.' To nurture not only herself but those in the house; her husband and her cats. She is an artist and author. She wakes up early to paint with watercolors and write. She knits.

So I go to my parent's cabinets and start to cook and bake. The flour Tupperware needed to be re-filled. Sign it has been awhile, eh? But soon I have milk, spices, and a mix to create some bubbling soup on the stove for the troops to smell when they roll in from a hard day.

I don't want them to get sick. I feel like I need to be what keeps them going, do the things that no one thinks about- like finding their sock drawer full.

I am thinking about watering today and I wanted to blog about the end of the season. Heck, there was one potted marigold that was dead, or so I thought. And would you believe it has the prettiest red and orange petals right now with a bud ready to bloom one last time? Like the man who was on the verge of death but bloomed long enough to carry 24 people across a river.

The book we talked about is called: The Price We Paid- accounts of those who crossed and lived to tell about these heroic acts.... Am I living up to the my ancestors and fellow beings who paid such a price to lay the foundation for me to follow??

That pushes me on. That pushes me to post. I looked at how many "hits" i have had. I am reaching some of you Readers... It could be for many reason why you have found this blog. I hope that it is helping you. I can't physically reach those who i would like to help. I know many of you are suffering. One of you has cancer. I wanted to share with your mother all the things that help me and the great products that bring relief.

I will get that info. or those things to you as soon as I can. I am trying, Readers. I miss my friends.
I miss my "kids"- those I help at the school to read, count, calm down, whatever. I miss coaching my kids who couldn't hit a ball to save their life until then, one day, they did. And I cheered them on like they were some NBA player.

Please, Readers. If you can, help a kid. It brings so much joy. And there are a lot of kids hurting out there. I saw them when I sub taught. Their parents are hurting and have stuff going on. I understand.
Who wants to be an "absent" parent? I can't tell you how I long for the day when J. and I rode bikes, I rebounded the basketball for him until the janitor kicked us out by turning off the lights in the gym at Skyline.

I miss cheering on his football team on the sidelines. Being handicapped is so. hard. I am learning how lonely so many of you have been out there. I am sorry. I am sorry I didn't understand your pain until much later in my life. I am trying to teach J. about your agnst. Some of you are mad. Some of you have fight for so much and get so little. I am starting to sound way too sappy. But, like I said, a couple of you out there are facing cancer. And it is scary, hard, and hard on scary for your loved ones. Tonight I tried to sing a song at the close of family night--- the words "Pray. He is There." fell from my lips in a voice that is sooo pathetic thanks to prednisone as well. (it affects your lungs and then makes you winded and my voice is crinkly.) But when i sang it, it felt true. Christ is there. He is here. I just have to link up to Him. how? Praying. REALLY praying. Sometimes it takes me being really sick to really pray hard. And then the feeling and knowledge that, indeed, I can feel Him here comes.

The pain is relieved by Him. I don't know how. And sometimes it is just a brief moment. Sometimes it is simply a knowledge that All is Well. In Isaiha is a scripture about water. About it being so encompassing. But the promise that it will not overtake us. I will find it for you later because I am paraphrasing.

Things are getting hard in the world. Viruses with no cure or vaccine or whatever. Mean people that want to scare the crud out of you and put it on the net so our little ones see or hear about it. Real great. There is no better cure or answer to how to endure but to read the truth..... that God is real.
That Christ really did suffer so He could be here with me while I carry out my purpose.

Readers, I have seen miracles and He has saved my life on several different occassions. Suffering is still hard. We can serve others, make dinners, fold underwear and still be wanting. He quenches that pain for me on occasion. Just enough to give me the strength to keep on going.

I think we have to go through what we do because we need to practice and know how to do things for ourselves. Like how our parents taught us to do things so that we could become adults like them- able to drive a car, take a math test in college, or learn a skill like hanging a picture on the wall. It all takes skills.

Divine skills take a different kind of knowledge. It can't be learned over night and often it is very,, very repetitive. Like being a 5 time cancer survivor. Or maybe losing a loved one on a one time cancer non- survival. Doesn't mean the person wasn't strong. Or didn"t "Beat it".

Sorry I am on a soap box. Hard day. And I want to do a lot of stuff. But I need to rest. J. made me pinky promise to stay in bed. He okayed me blogging cause he knows it helps others and me.

Okay- I am posting all my posts that are in the editing phase. Cause this was long. And preachy.

Friday, September 19, 2014

Two Days til 2nd Entyvio Loading Dose


I won't lie. I feel horrible. In waves. Two more days until I get another injection of Entyvio. Already I have had some improvements that I can't attribute to getting the Entyvio, coming off Imuran,  or

HOWEVER- it could be that I went off IMURAN. (what I took for Crohns)

And I went to Wal-Mart. Many folks can feel nauseated, their plantar fashiitis in the feet can act up after walking from the Pharmacy to the milk.

Wal-Mart may make you want to blog about misery on a Friday night.
I blogged about my blessings yesterday. Better look at that and post it.



Wednesday, September 17, 2014

What I Googled Today/ Bike Taxidermy

 
Bicycle Taxidermy by Regan Appleton | http://www.yatzer.com/Bicycle-Taxidermy-by-Regan-Appleton
(We love Antler racks on wall. Plush heads of wild game in a one of our Doctor's offices is quite comedic. We also love to Bike. This Bike Taxidermy is a result of a Google.)
(You can have your fav. bike rack done by Regan Appleton Bike Taxidermy in London.)
 
 
I google some pretty strange stuff.


 Which leads me to other..... stuff.

So I am going to be like other... uh.. people or stores or blogs or fast food places that have a regular deal. Or Jimmy Fallon.  And it will be:

 
What I Googled Today.


Catchy, eh?

But not as catchy as these things that I suddenly want to do with J's trikes, bikes, BMX Flick Trick Toys, My Orange Cruiser....... oh, wait. I sold it. It's gone. And my physical therapist told me to keep away from biking until my vessels quit hemmoraging.




(photo @ Regan Appleton)



Oh, no. Now I am almost about to bawl over that orange bike that no one in I.F. had. And how they knew me and J. Cause we biked a lot. He even pulled his bike trailer from behind his tiny bike to recycle coke cans. Dang. I mean DANG.

I needed to find out how to make "fake" antlers out of paper mache or something for a wreath (mixied in with dried hydrangeas from the yard. )and fell upon these nuggets of fun-ness. Actually, I might have been searching something about laundry.

Yeh, I know, seems like I am not busy. Readers, I am.
Whether I am in bed or up trying to help and instruct or trying to water my flowers in the middle of the night- I am busy. Thank you, Prednisone.




So I thought, I should put what I google in a day, on my blog for kicks.

kick.


Monday, September 15, 2014

Entyvio Day 6 & 7 "Symptoms"

Mom: "Would you like some Oyster Stew? I am making it for Dad."

Blinking like we'd gone back in history, were standing in front of the Titanic and she wanted to know if I would want to go on it with her and my Dad.

"I am crazy nauseated right now!" I confirmed.

Readers, on a healthy day, the smell of oysters makes the gag reflux in me get going. I just put duct tape in front of my nostrils to avoid barfing right now.

There is the option of going to
ER for IV Zofran. Kidding. The ER is for emergencies. Like after you have died and they possibly try to revive you.

Anyway,


These were my symptoms/activities yesterday:

Nausea.

~Went to 2/3s of church!!!! The last two-thirds. I got high fives from the widows!

~a small bite of bread (sacrament) burned my esophagus. When does that happen? What is going on down my gullet??

 (Entyvio hasn't kicked in yet and if it has I have a lot of ulcers that need some healing. Please don't mean I have to be fed with a tube.)

nauseated some more.

watched Studio C (I think it must be BYUs version of Sat. Night Live?) with J.

hungry at night time. (food didn't seem that great all day but could eat thanks to Zofran)

Ate some Hershey Chocolate cause I craved it. Bad Choice. Burns that pipe.

Listened to a lesson on 'Being Prepared'

Advice Given: Don't Over Do It

OVER DID IT



Monday

Paid the price for overdoing it.

sttteeeee -rrrrrrrrruuuuuhhhh-gled.

 Nauseated. Headache. Muscle cramping.

Texted friend

Got text back: 'That's OK [over doing it] cause that's how you know you are stretching your limits and improving. Push through it and don't let it set you back. Try stretching too.'

{ This friend felt like me but only cause she biked 11 miles, mowed her lawn, then was in the 9-11 Run event, and had some sore muscles. She pushed through and biked 10 miles the next day and feels better..... Oh, and she is a grandma. }

Eat my morning meds (well, gulped/gagged them down with some applesauce and thought how funny it would be of me on the front of a Wheaties box stirring my morning meds and it saying breakfast of.... ? and felt bad none of my friends that would think that was funny, were around to laugh with me about it.

Showered. That was momentous enough.

Wrote a list of fun things to do if I could do them
List said:

Blog.

Hang a couple things back on J's walls. (Painted and am slowly putting stuff up)

Re-purpose a shelf into a shelf from being behind laundry door to a shelf to put J's trophies, etc.

Learn how to make fake antlers for a wreath of dried handrangeas.

Go to place in Shelley that has old stuff.


Go to D.I. and find an old bike to use the seat for the 'skull' of the handle bars off idea from
Bicycle Taxidermy.com

Some laundry (I put a load in and looked at some that is folded in the baskets.

Line vanity drawers with cute paper. (I did two.)

What ended up happening:

Went to friend's and did a very poor job trying to learn how to use a Silhoute Vinyl Decal machine.

Laid on friend's computer room FLOOR at one point with a head ache and, you guessed, nausea!

fielded over 16 family/group texts on soap and then a series of funny things associated with that.

talked to J. about a good, boring, but good day at school.

rejoiced in no football practice so J. had an almost summer after school day! yay!

drank some water and ate some turkey lunch meat. ughhhhh.

declined ice cream from Reed's Dairy for Family Night

I am blogging. I feel like death warmed over. But I stretched myself.










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