Tuesday, September 23, 2014

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.

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