Friday, March 20, 2015

What to Expect When You've Stopped Expecting

To any new readers, these are old, unposted posts. I have been reading my posts that I never threw out there to the world.
Readers, this is an old post (it's from 2013) that I am putting up for you to read! It is easier for me to put my rough drafts out there than come up with new ones. And it helps me to see the progression of my disease.

I am excited for some things and trying to be happy. It's hard when you are sick and things are not well. But it will be okay. Gotta be positive!

(Photo history- grandkids left their soup and eggs for something more fun to do- play outdoors. )

Nurse Sonda: "Unfortunately we have entered the "second phase" : things are going to get worse before they get better, "  phase.

* Sonda, if you ever read this- you were the most intelligent nurse/assistant to a Dr. I have ever made. Amazing. UofU lost out when you had to move! I wish I could have said good-bye in person!

Just before Sonda said this to me, I'd just put on one of my chandelier earrings, ones that I'd converted into "clip ons" with the help of a craft store.

Normal earrings were causing my ears to break out and I SO wanted to wear earrings! So I went to the craft store and found some ear pinching clasp ka-bobs that take your favorite earrings, that you can't wear anymore due to your allergy to them, and turn them into Grandma clip ons."
Which ended up just making my ears red anyway.

(Already wishing I could at least look like the Queen of England, )

Look at her flawless  pure white skin!


That is the color I need to cover up the  big rosy rashes on my face with crohns. Maybe if I start wearing BIG hats like the Royal Family, and a big sport umbrellas it would help to keep the sun off my skin  to get that white.....)

in my young age and and pierced ears but clip-ons on, and in a shirt that would look just as good on Grandma as it does on me, I felt my stomach sink. It's been a lame last 23 hours anyway.

Shin splints have cropped up on my legs for some reason- I only had gotten up to around 150 M&Ms,
 so I chalked it up to the prednisone bone pain. But it's meant soaking my feet in hot water then cold water. Hot then cold. Ice cold.

That was pre-sprain to help with the water retention. (my ankle is somewhere in all that puffy)

It is better than any compression socks, or other options. Don't buy those. They honestly just push the fluid somewhere else. Since Crohns folks can't take anti-inflammatory medications, ice is all we have to help with inflammation.

And, boy, if you take it seriously and devote the 3-4 times a day soaks for 20 minutes each heating point- You will feel relief. But you will have spent all day in the tub or a foot bath which doesn't reach your knees.

Also use LOTS of Vaseline and lotion on your feet/hands afterwards. When you wake, upon standing the skin needs to be as elastic as possible. OR standing on feet that have too much stretched skin over swollen feet- s-p---lit. Yes.... cracks like crazy and oweee. oweee. So go slow. Maybe massage and put your feet up for 15, then stand.

Even though I haven't been playing ANY demanding sports, I've suffered the "injured athlete sentence" of ice water. After ten minutes your legs, or whatever appendages go numb and its okay. But that first 10 minutes of excruciating polar bear marathoner dippers....... wowzers.

Sonda  caught me in the middle of also trying to put on make-up,  run frozen vegetables up and down my shins and coax J into deeper cleaning of his vacuuming of his room (The WHOLE room. UNDER the bed. A feat as difficult as heart surgery, I bet. )

. "mm-hmmmm." was all I could say in response to her analysis of my symptoms.

 my enthused response to Sonda was not typical  and  I faintly heard her as I looked at myself in the mirror across the room deeply wanting a stylist.

She set up appts.while I whined,-- even if they are across town. It's so discouraging to have to go to unexpected appts.You feel it is unnecessary and wish to just go give a blood and urine sample and have them call you in the morning.

We discussed other symptoms, that only one can guess is the cause, I'm sure the meds are the culprit. Like she'd said-' I am in the Second Phase. Which is the equivalent of third trimester for a woman's body- you are a big. Maybe the baby is giving you wicked heart burn. You waddle. Swollen legs. The hardest part is coming--- the worry. the pushing. the baby actually being in your life. It gets worse before it's better. But at least there is a cute baby to cuddle. Or, maybe, you face something devastating- not in the game plan. Like an illness. Or disease.

But this is:

PHASE TWO - or SECOND trimester of Prego Prednisone.

My mind tried to wrap itself around the day's activities, the fact my kitten hands gave out on me last night as I was re-arranging the fridge and Mom's, "just made", still hot, vegetable and roast soup tumbled from the Tupperware and scattered softened carrots and celery, meat and my brain all over and under the appliances- DID NOT HELP.

One more appointment?

Makes me wanna hurl. All I want is for my wrists and ankles. Knees and shins to work and not feel like tooth picks.

Sonda did a great job of empathizing with me, really. She knows the ins and outs of my system better than I do and she let's me know she's sorry it sucks.

I ended up doing different shades of eye shadow on each  eye lid to see what worked. Neither. Stuck the other chandelier- which feels as heavy as a table light fixture, on the other ear.

J:  finished my chores!!

He left to a friend's house.

Went to a friends' house but returned shortly there after.

Me: They weren't home?

J: No, they were.

Me: Doing chores?

J: If I tell you, will you promise not to make me do it?

Me: Mayybeee.

He scrunched his face up in pain and confessed:

"They are doing 'vacation school work' and they have to read."

Me: Well, does that mean that you don't want to read Rahld Dahl's: James and The Giant Peach with me over the spring break?

J: "Well, I guess that's okay." ( IHe'd rather watch Apollo 13 for the 13th time. " (last sentence inserted.)

With the same discouragement, I went into the fam room, sat on the edge of the Tred Mill and walked off an M&M. It took 5 minutes.

I ate a handful over the weekend. I wonder if HERSHEY company would sponsor me somehow?
*(wow. Readers, remember when I would walk on the treadmill and burn off an M&M? Sigh. I am so many M&Ms away from ths moment.)

Today was hilarious. Jaden has been set to have a cavity filled and has peppered me with so many q's that I have lost patience with the dental process. The hygienist noticed his really anxious demeanor despite us talking about taking it like a man, and asked me if we'd want to do some laughing gas.

I asked how long he'd be loopy. He asked some q's: "How does it make you feel?"

Hyg- "You just don't worry about anything."

J:" I like not having to worry about anything. Does it actually make you laugh?"

Hyg: In some kids.

It wasn't long before I could hear the ring of giggling coming from the seat J. was sitting in. I guess he's a giggler. I, on the other, we've learned am a "cryer." A good, happy, grateful type of cryer!

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