Entyvio, EV-D68, & NINE ELEVEN Thoughts

 



 

I started this on the Eve of 9-11


First Etyvio symptoms after three days

Depending on whether you have a kid in school and football may make the symptoms different...

1. Entyvio


- Extreme relief the school week is over, J. is getting his routine down (as am I, sorta) the fact he didn't have math on Thursday could have contributed to this glowing feeling.

- Day after the infusion I was able to blog, hand wash some football socks (kidding- but I feel I have to do extra special stuff to his clothes that I don't even do to mine! ), do some laundry, get some exercise, etc. By exercise I mean doing normally day to day stuff healthy people do. Like put their clothes on, get ready for the day, walk up and down stairs, through parking lots when there is no spot to park- things like that. Oh, and stretch.

- Day after that I went to a hardware store and bought some nails and used a hammer to drive in a couple of them. *the packet says not to use tools afterward if you are dizzy. ha, heh... hmmm...

- OK! next thing. MIDDLE OF THE NIGHT NAUSEA.  Now this is curious. In the middle of the night I am nauseated. And I am right now.

- After said trip to small grocer's and hardware store I couldn't unload my groceries. (take ice and cooler, Readers.) So J. did that after school.

- Third Day: Lower Back Pain. Or just back pain. Sat on bed. Became stuck to bed like a fly to fly paper. Pain got worse. I wanted to cry. Still managed to talk to J. about all kinds of stuff. Kid was happy cause they had some award for winning something for football and got a Wing Party but it turned out to be pizza.

- Ate Butterscotch pudding with J. , read some more with him- We are reading a mystery book by Korman, and then the book: Out of My Mind. Enjoy both!

2. Nine Eleven
It is easy to forget the devastation, sacrifices since then made in behalf of that day.

When J. got home from school I asked what they did for the 9-11 date.  He told me about the lack of time, etc. And so we headed to you-tube. It was a good thing cause I needed to commemorate the day better than I had and watching some clips, seeing some families that are still grieving to this day made me

 

remember.

 

When we had fam prayer we had our moment of respect.

 

 

3. Enterovirus D68 or zorrovirus d sixty something. Why do these viruses have to have such hard to pronounce names (for kids) ? Why not treat them like the hurricanes and just assign a basic name?

 

 



 



Like the Sara Virus. Lots easier. And if ya still want to add a number just use Zeros. We can't keep up with the 100 different strains. And it wasn't re-assuring when I read the news articles or watched News Channels in Utah tell there were some 100 kids with it and some in ICU within 5 hours of getting the nice email.

 

And it doesn't help that if you are an asthma sufferer, you are more at risk. I can't even get the shots for asthma cause they can interact with all the new meds I have been on. How fair is that?  

 

Before this hit Idaho and was somewhere near CO. I encouraged J. to

 

"feel free to wash your hands periodically through out the school day. Especially before lunch, blah, blee bluh. " (the sound of my voice and pre-cautionary advice as it is drowned out by J's parent filtering system.

 

THEN I got an email from my local hospital telling me of confirmed cases. So, now, when J. gets home I tell him to remove the suit EBOLA attending doctor's wear, and go ahead and throw it in the wash. On Scalding Hot.

 



 

No more waiting until a visible sign of dirt, ketchup, etc. on his jumper this time!

 

In fact, I am tempted to RE-LABEL his school shirts/shorts  and swap them for the "older, more worn" shirts dubbed:

 

WORK OUT shirts/ CAMPING Ts.

 

Yup, he may as well save those nice shirts for playing outside and doing chores inside and outside and let the worn shirts go into germ haven- a.k.a. : school.

 

Because I don't want him wearing the new shrunk shirts *washed on Scalding Hot* to school! No! Wear the tiny, old shrunk shirts!

 

 



(We are all gonna have to move into little houses like these due to EBOLA and that other virus.)

 

As someone who enjoys laundry and dreams of a Martha Stewart Laundry Room that is spacious with lots of windows, I like a challenge. I may make a fuss when J. rubs his hands on his shirt or wears his white undershirts to work in the mud but, really, I like a challenge.

 

I have a whole kit assigned for getting out stains.

 

Back to the virus. While reading about what to watch for in your kid

 

- if they turn blue in the face trying to breath

 

-if they are wheezing and can't get "enough air"

 

- if you find them passed out : Call 911.

 

 



(Are these two friends? Look at that Palm tree behind them. Hmm. Paradise I guess.)

 

I came across some other valuable information for freaking out people with a dumped immune system. Ya know those side bars that do ads? Well they decided to put up some horrifying statistics that ya just don't want to read.

 

For instance. They showed a hospital hallway and said:

 

 "C. Diff. has probably been admitted to all of these rooms." 

  (can you picture a person in a wheelchair backing themselves outta there?)

Whoa!

 

 Clostridium Difficile resides in all of our guts but if you are elderly, on chemo or other immune suppressing drugs, and take an anti-biotic; the good flora in your gut can be overtaken by the  C. Diff.  It gives you major D, and ends up killing you if you are an unlucky person or part of that group most at risk. Otherwise you take a big gun Antibiotic called VANCONyacin through an IV so it passes your gut and finally fight it off after two years. Then you can't take any anti-biotics unless you are super desperate.

 



(you gotta feel like E.T. at this point)

Like, life and death desperate.

 

Another catchy ad gave some ER room stats about the curtains that separate you and the weird people next to you. Too bad these aren't sound proof... Did you know these aren't washed until a visible sign of dirt? Yup. So MRSA, STAPH, and old man B.O. are hanging onto that while you are there.

 

And they don't clean the waiting room chairs off that much so tons of cross contamination going on.

 

 

 

Another horrifying stat that I could have done without:

 

Half the beds in hospitals carry Bac. ugh....

 

(White Boots.... Good Idea)

 

It made me feel validated for past visits when I brought my cleaning kit, mop and bucket to the hospital when I  had to be admitted. (me, trying to be like Mark Twain and lie.)

 

Once in a room I reach for the Industrial Strength cleaner wipes, no lie,

 

 

 

 (use gloves, Readers! that stuff is serious business. It can melt your hands. Padre's are pretty rough and can probably handle them for wipes but the rest of the population can't! And it has some link to cancer or something.)

 



 

and I start wiping down the bed side rails,

 

 

 

 

phone, remote control, etc. The nurses love an independent patient. So does the janitor lady that I see there. She is so dedicated. I pull back the EBOLA mask and say:

 

 

 





"Don't worry about the bathroom! I got it or I will when I get out of bed to use the bathroom. "

 

So while in the bathroom just use that hand rail to steady ya when you mop with the mop you brought from home. This can be chucked with the rest of the bio-hazard material.

 

Nurses also are impressed when I empty my own "bucket" and write on the Dry Erase Board how much liquid output I have put out.

 

This is another one of my pre-cautionary steps to keep the nurses from contaminating my room as they hustle from room to room. Actually, I am kidding. I have had to do it because when it starts to over flow, it isn't hygienically pleasing and nurses are super busy as they are understaffed on whatever floor you are on.

 



Apparently they are selling these puppies for whole sale. Lovely.

Nurses have a tough gig. Sure they get paid well but who wants to empty your bucket after ten hours on the night shift? Exactly. Only Mother Theresa.
Which is why I have to give the nurses a break after my infusion on Monday. I had read online that I would have a "drip of Entyvio" for 30 minutes and then have to be observed for two hours.

The minute the Ebola outfitted nurse removed the needle I was "good to go." she said.

 No I don't have Ebola or the virus running rampant. The protocol for the med means that they have to dress up and cover their faces so they don't touch your medication.

"I can go?"

Nurse # 3 - "Yeh, we have a lot of success with this med."

ME: "It just came out."

HER: "Well, that type of med." (referring, I guess, to gene modulating biologics.)



" Well, that's good cause I gotta get home to my son who is done with school soon. Can I get the pamphlet to the med?" I thought since I was there I could get the real deal tissue paper handout for my filing cabinet so I asked a nurse. Happened to be one that had done the dirty work.

"Sure!" she said kindly.

As I was sitting there putting pressure on my blown vein, nurse # 2 said:

"Can I help you?" 

At first I looked side to side for someone that looked like they were the ones being talked to but since I was in between two unclean curtains (by the one site's suggestion) I realized the intimidating woman was talking to me.

Due to her look I initially stammered but recovered and said confidently.

"I am being helped." and I tried to whistle a tune while I waited so I looked busy.





"You're done." she said crisply in a way one might feel if you were being dropped off at your house and all they did was slow down, open the door, and roll ya out.

Readers, this is where I said even more confidently:

 "I am waiting for the nurse to get me the med info. You are right, I am finished and will leave when she gets back. Do you want me to sit somewhere else?

By this point there were witnesses and she said she'd asked me if I was done. This is why I'd love one of those Go-Pro Cams.

The nurse came back and said she printed some info off the Internet for me, handed me the paper work and I left. I exited a different door and had to pass by the ER. One of the nurse's came out and said real nice, like good friends nice:

 

"Hey, Manda."

 

Russian Ramp

(A Castle in Russia. The whole post I used castles from there.)

 

Jaden coined this phrase (Russian Ramp) the other day during one of my

 

Motivational Speeches.

 



One night J. and I had to pound through some hardness. i.e. homework, having football practice, and me trying to incorporate "Order" , "Organization" and P.S.:

"Wash school off your hands!"

when ya get home cause there is some crazy virus back east that is supposed to make its way here and plus it's just disgusting. (Kids pick their noses. So do grown ups. And nobody is washing their hands in the cold water at the faucets.)

 

 

 

J: "I can't wait til you get over this 'organization' kick!"

he said as I was telling the virtues of Hand Washing before going to lunch.

ME: "This isn't a kick- it's what people do. Well, people who like to enjoy life without having the latest epidemic."



But by then it was too late. He was stressed with back to school, having three different teachers for different subjects and the roving that it entails. Like you are in Jr. High minus the locker.
His back pack is wicked heavy with all those books.

Anyway, we had to transition to reading and that caused moans cause the sun was out and he hasn't gotten down the part where he leaves his planner for me to sign in a designated spot.
(heck, the past two days he hasn't even brought his planner home. )

More spouting:

"Well, this is great! I have no time to just go outside and/or hang out with friends! And YOU start in with this

 

 

 Russian Ramp!

(apparently this Russian Castle is Rotting...)

 

Readers, it isn't like we are dealing with Calculus here but he did have a point.

 

 

Now that we are back into school, and football with mid week games, new teachers- it is

 

GAME ON!

 

Meaning I need to get physically better and fast because my duties as tutor, launderer, and basically head honcho/ co-ordinator / Captain Kirk of his life from my 'Star Enterprise Station' is in the balance.

I have a kid coming home from school and practice with dirty clothes (it doubles when they are in sports), bruises and new injuries (which means I turn into physical therapist/trainer and stretcher outter before practice for those ham string pulls, he needs to eat real food (which means a bigger meal than I do cause if I am nauseated I assume everyone else just wants broth and crackers too),

a kid hitting puberty who needs to jump in a shower and then " Go to Bed!" (my last instruction of the day which is said at least ten times.

 

 

How hard can that be?

 

Hard. Very, very hard.

 

Who really likes math when you struggle? And watch the light outside fade and your window to freedom shrink? He needs chill time. And that is going to be incorporated into my

"Back to School Organization. "
(shh. don't tell him I am calling his unstructured time part of the Order in the House dealio)

 

Getting him wound down after all the hullaballoo and coaxed to sleep after football practice, making sure all our ducks were in a row for the next day,

 (thank you organizational angels for helping us do our best each day)

 

is a task.

 The night that was from a day that took 1.5 hours, we veered from the hoped protocal that I haven't even been able to do once yet since the year started and we pillow talked. For a long time.

 

It stemmed from his first day meeting Officer Zaugg at his school. And it was the best hour I have had with him this week!

 

No, he was not in trouble! The D.A.R.E  (drug) program was introduced and the officer told about his partner who was killed in the line of duty.

 

That partner was

 

 

a dog, 

 

 

but it had me crying by the end of J.'s recap. wow.

We have some brave people who are protecthing us. And a lot of them are canine!

Fuzzball, the German Shepherd helped for many years and then was shot by a group of men with drug related charges.

Listening to J. tell me all about a dog before bed and his patriotic service was a tear jerker.

The program that the kids go through now is very intense- they are required to be responsible and are givin a lot of things to do outside of their regular school work.

 

When I was in elementary we had just a small Say No To Drugs program. We re-enacted some things and had a notebook to learn. But today kids have to:

give up pop for the whole time (Ends in Jan.),

keep their rooms clean and in order,

dress in Sunday best once a week,
go without all TV, and other electronic gaming, videos, texting for a two week span,

and

 complete the course in a notebook.
It's Fantastic!

Russian Ice Castle
 

 

I also had homework!

 (The third night in a row since he has started school.)
 

They really want to bring us parents to the table and I appreciate it. It worked last night as I spent a good half hour listening to Jaden tell about this officer, his partner in crime, and the new dog that assists him today.

 

It will be hard to not watch some of the fun tutorials he watches on youtube, going to hard football practices, doing school work, facing hard subjects head on, and dealing with the changes your body goes through on top of it all.
(Ha 'erbon, the city of ice. Says that when you walk through it, there is a 'painfully cold breeze.')

(Does Russia hire this sort of work locally, or what?)

However, I can relate to the acne issues of these years as prednisone does a great job of keeping my skin on permanent teen year mode.

As for my speeches/tutorials/lessons of life being dubbed
'Russian Ramps' I will take that as a compliment because that nation is know for hardworking ice skaters. And who knows, maybe J. will become an Olympic Ice Skater.

*Come back soon. I have some laughs I recalled from my Infusion and Idaho now has the EV-68 virus! Confirmed cases at Eastern Idaho Reg. Med Center.
(I am on their mailing list so I got the fun email last night. Yay.)

Entyvio Loading Dose Day

 

 

Today is the day!

 

 Loading Dose Day

 

 Week ZERO of Entyvio!

 

I thought it only proper to go through some personal checks with my body much in the same way a pilot does before take off in his plane.

 

Joint Pain? Check

 

Muscle Cramping? Check

 

Intestinal Pain? Check

 

You get the drill! All systems need it to go! So I got online to read the pamphlet on Entyvio that is so new, there are some translation kinks that need ironing out.

 

One of the lines that had me laughing was the wording for how the med is administered. I am used to the word: "Intravenously". Means I am tethered to an IV pole for a looonnngg time in a room with others stuck to the beeping thing for our medications to upload.

 

 

 Well, this med is so new, that there seems to be a need for translators. Because this is what it read:

 

"the infusion will be given to you by a doctor or nurse in a hospital through a drip in one of the veins in your arm." In one word: intravenously. Because this is an Infusion.

 

 

And there was a caution to...

 

"..Not drive or 'use tools' if I am dizzy." (I am sure they meant heavy machinery on some sort of construction job, etc. )

 

This was hilarious to me today  because I actually had plans to use some tools later in the day if I felt up to it.  (The hammer today to hang some pictures and possibly use Padre's drill to hang my magnet board in a different place. So I will have to put off using my tools today! Darn!

 

How did they come to this conclusion? Did those who tested it have a bunch of lab coat wearing, clipboard carrying people watching what a patient would do if they handed him/her a hammer?

 

When the patient dropped it on his foot, hit his thumb, or started to hammer her head instead of the wall did they frantically write down the information?

 

Did the patient try to use her measuring tape to see how much burlap was needed to put over the cork board she had and instead of measuring the material started to measure the store owner?

 

Sorry, this is patient humor.

 

When I got to the end of the information available on Entyvio I read it could take 14 weeks to see a difference, I was a bit bummed.

 

*********

 

I'm Done!

 

Wasn't a big deal. At least I haven't felt like it thus far and I have been home with J. doing our after school routine.

 

Which, in organization corners, would mean he dutifully went to his homework station, took it out, then went to the command center to find out when practice is, etc.

 

I have decided that "I" am the command center. Wherever I am, that is where they look for the command.

 

And homework station is a very fluid area. Read at his bean bag. Or on my ottoman. Or my bed. Or his bed.

 

One thing is for sure- we need a clip board if he is roving. Kidding! No Worries!

He is studiously working on it in the vicinity that I had picked while I am wondering if any of my symptoms are from the new med or how I would have felt had I been sitting here cracking the whip on J. as he did his homework.

***

Got nauseated at 1 in the morning. Thank goodness for Zofran. Today I feel a bit like a bug hit me.
And it's a little slower going thank goodness for a place to be, heal, and take on this new drug.

 

 

 

Summer is Over?

Readers,

I have been up a few hours now and the minutes are counting down to when the alarm on my phone will go off. It says: SKI! Because I had to set an alarm when we were at Grand Targhee just in case J. didn't get up.

I will hit snooze and that will leave another hour before my son gets up and I send him off to school. Again. Another summer.....

Yesterday I was outside in the crisp air and sat in my adirondack chair as J. played with a remote control car/truck/something; Padre worked on a project with his saw, and Mom cleaned off and hosed down the steps.

I took care of the gnats in the crease along the front porch and then settled into my adirondack chair and looked at my flowers. I got emotional. I am emotional right now!

Another summer.

Before school let out, J. and I did some "Stay Vacations." This was where we pretended to be visitors in I.F. and spent the last couple days of school, at a hotel. I was worried that I wouldn't be able to travel much, camp, etc. and so we pretended. Best idea. The summer cruised by us so quickly.

Due to me needing to be home more this summer,  we almost got through the whole series of "Little House." Yes, it is a bit cheesy and when we are emotional we now will jokingly say:

"Oh, Pa!"

like Laura or Mary  Ingalls and I wonder if Michael Landon is dispatched in heaven? ha, ha!

This summer will be remembered as the one where I got into:

 Organizing.

Which meant bringing in Marnie. Another "Best Idea"; get a pro to help you organize. Most things have  a place now and most of the time find their way back to their "home."
 There are "Re-location" boxes still hanging around wondering where they will be re-located. It's a long process, getting organized. And I haven't even gotten to paper yet. Another day.

Thankfully, most everything is like clock work and makes me more able to accomplish the tasks that one takes for granted when in good health.

It was a good summer thanks to a lot of people and friends. My heart needed one last look over it all and I had to come here to write. J. and I both worked through a lot this summer and will continue to as another school year is upon us. Lots of prayers shooting upward.

Cowboy FairyTale

(my kind of log cabin from cordwoodconstruction.org)

So Madre got some story telling tips from her grandcowboys.

After relying heavily upon the written version of books while babysitting them one night, they asked for a

Real Story.

"I am not very good at those." she said knowing that their father was the best at the tall tales.

In an effort to ease his grandmother's mind and help her, Kid #2 said:

"It's easy! You just start with 'Once Upon a Time There Was a Cabin'.."

She uttered the words and he encouraged her with some hand motions to pull out the words.

His brother sat next to him playing with a little truck. He got a big elbow and told:

"Pay Attention! Grandma's telling a story!" I think they ended having bar room brawl in their bedroom and Grandma had to break it up.

It's Back to School for J. and last night we reminisced about the time when it was Summer and how the cool air has set in, signaling fall and football. I can't believe it.