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.

I think I was too tired to finish up how the rest of the 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. I went slower because I had to. I almost asked for a wheelchair but the open staff room was empty. So I took a rest and walked slower. But I kept my head high.

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?

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

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. Bjt it was business as usual after i got into the truck; back to real life!

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.

That's right, Readers. I have inherited my gift of lots of information from the gene pool. I closed my eyes and nodded but declined the offer to go look at something with him and said we 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

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.... ?)

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.

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.

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.

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. But the nurse delicately put it in for the last tsp. Ten minutes she held it.

She 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!"

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.

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.
 
 


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