Yo! Yo! It’s the Cushie Life for Me!

Living with Cushing’s Syndrome is much like living on a yoyo. It certainly has its ups and downs.













Some days I have so much brain fog that it feels like I’m just spinning in big circles around the world.












And some days I’m just plain loop-the-loop.



Some days I have so much ‘roid rage I could skin a cat.



Other days I just cry and rock the baby.



Once in a while, I feel well enough to walk the dog.



I have no control over this yoyo illness. All I can do is hang on for dear life until I get my surgery. Then I will finally break away.



I’ll be “me” again when I get off this yoyo. See you around the corner.


Images from http://entertainment.howstuffworks.com/easy-yo-yo-tricks.htm


May 26, 2010 was a very good day


This post is my first attempt at following Jilly’s lead in providing a slice of life every 26th day of the month.  I’m not as good at it as Jilly is, but I’ll keep practicing.

The morning was busy with emails, facebook, and forum posts.  Unfortunately, a lot of it was redundant as I have posting notifications sent to my email.  Whenever someone posts something on facebook, Multiply, or the discussion forums I participate in, I get an email.  I could turn off the notifications, but then I would forget to log in to some of the places and would miss important posts.  I’d rather have the redundancy.  But I am behind on reading Multiply posts and will try to catch those up during the next few days.  Well, that is, of course, if you don’t all go crazy posting a million things.  Then it will take a bit longer….

Better Half brought in the mail.  This time of month the bills begin to arrive.  But today it was just statements from my insurance company detailing bills they paid.  I’m always surprised when I don’t get catalogs.  I’m overrun with the things and appreciate days when they don’t arrive.  One per company per month would be quite welcome, but some companies send new catalogs every week.  Waste of paper and ink, if you ask me.

Early in the afternoon our “summer neighbors” arrived at our door.  They are good boys.  If I remember correctly, they are about fourteen and eleven years old.  Though we are not related, they call us “aunt” and “uncle.”  We miss them during the school year when they live in another town.  Like our grandchildren, they are polite, thoughtful, eager to help, imaginative, and full of joy.  They brighten our home with the light in their eyes and huge smiles.  And they never fail to bring me a hug.  I would have taken a picture to share, but couldn’t find my camera.

Jimmy Dean Owens escaped a few days ago and has been living in the thicket just across our property line.  The oldest boy reported that he chased his basketball into the woods and saw Jimmy Dean sleeping.  Nobody seems to mind that he escaped—even when he pals around with the neighbor’s dogs.  In fact, Jimmy Dean is a local amusement and a hot topic for the Spit-n-Whittle Club.  So long as he is foraging for himself, he’s not eating feed.  That saves us a good bit of money.  If he stays out of local gardens and doesn’t get into any serious trouble, we’ll leave him alone until closer to time for butchering.  Otherwise, we’ll gather the neighbors for a  pig hunt and have a luau. Pigs are supposed to be the smartest farm animal.  I’ll get back to you on that.

I spent some time updating my address book and organizing my medical notebook. Then focused on cleaning the kitchen.  I don’t do that often because it requires so much energy and is a bit tricky from a wheelchair.  Besides, my daughter or daughter-in-my-heart (daughter-in-law) do a better job than I can, so I generally leave that to them.  Recent logistics, however, have kept either of the girls from coming out for a cleaning day.  And it had to be done because we are having company from Friday night through Monday—three more adults and six children staying over the nights and others dropping in during the days.  I won’t be home from Thursday evening until Friday evening.  So it had to be done today.

Found my camera.

100_3512 100_3509 100_3511

This kitchen was designed to be more accessible for my wheelchair.  Notice that there are no upper cabinets and all the lower ones are drawers.  There are still a few things that are hard for me to reach—like the pot rack.  Better Half wanted it for his iron skillets.   I don’t use them much because they are heavy.  He does most of the cooking and uses them all the time.  But he never hangs the skillets on the pot rack.  So I put them in the oven out of sight.  The pots and pans I use are in the drawers next to the dishwasher.

It’s a small kitchen that two or three adults can work in together.  The bar provides a good place for the grands to sit and help with the cooking.  It lets them be part of the action and keeps them out of the traffic at the same time.  You can’t see them in the picture, but on the kitchen side of the bar are four huge drawers that hold my dishes, mixing bowls, drinking glasses, and food wraps and cleaning supplies.  The drawers under the coffee pot hold coffee fixin’s and small appliances that aren’t used every day

Speaking of cooking, I cooked dinner tonight!  Meatloaf and mixed vegetables.  Nothing fancy, but I did it by myself while Better Half was working on the travel trailer, getting it ready for summer camping.  Cooking by myself is a big deal because I often need someone to fetch items from the pantry (can’t get to it with my chair), help with chopping vegetables, or lift heavy pots, etc.

After dinner, I got a couple of loads of laundry pre-treated and ready for the washer (can’t get to that with my chair, either) and Better Half got them washed and dried.  Now, I just have to put them up.  But that will wait until tomorrow.   

Yep, it’s been a very good day….

In the Pink or The Ice Man Cometh

For the last several days we’ve been under a Winter Storm Warning. The weather maps colored us pink, just like areas for many states along our latitude. Now the freezing rain has arrived and the radar shows it as gradients of pink to purple.


See that little town called Kansas? The K is right on the edge of the blue and pink. We live 1.5 miles south of that first s in Kansas. See me waving?

Meteorologists are warning that this could be as bad as the ice storm of ’07 or ’09. In ’07 we were without electricity for nine days. No electricity meant no water from the well. Thank God we had propane in the tank and a gas range for cooking and a backup wall heater that worked without electricity. We learned a lot about preparing for ice storms in those nine days.

Now we have a generator and the capability of powering the well with it. We won’t be running medical equipment, cell phone charges, or laptops from 12 volt batteries charged in the car and rigged up with power converters. So long as we have enough propane for the stove and heater and enough gas for the generator, our lives change little when the power goes out.

Until we can switch our water heater to gas, we’ll miss hot tap water in a power outage. The automatic dishwasher won’t plug into the generator (but the clothes washer and gas dryer will). I’ll heat water on the stove and wash dishes by hand—and get the added benefit of soothing the arthritis in my hands. We’ll use lamps and flashlights instead of overhead lights. And there will be strategically placed extension cords for the fridge, electronics, and medical equipment. Small inconveniences, really. Hardly a hiccup in our daily lives.

We’ll have soups, stews, casseroles, fresh bread, hug-in-a-mug, and other wonderful cold weather foods that warm us body and soul. We’ll cuddle and watch movies or read books or play games….unless the buried phone lines quit powering our DSL, we’ll have Internet and I’ll still get my homework turned in on time. (Dang it, nearly all the schools in the state are closed but online schools don’t close down for bad weather.)

Well, like I said, we’re prepared for the storm…maybe a little too prepared.


Another Talyn Quote

Some of life’s biggest moments drop on you when you are not looking, and stick to you, and brand you, and change you in ways you cannot understand and would never expect, and when they first happen they look like nothing so terribly important and then they gather mass and speed and momentum and when you finally realize what has happened it has become far too late to move to safety.  If only when they happened bells rang and eagles dropped from the sky carrying notes from the Saints in their beaks saying “Run!

But they don’t.

from Talyn by Holly Lisle

And where would we run to anyway?

Most personal growth happens that way.  With us kicking and screaming in protest like a child getting a wound flushed with alcohol and the debris mopped out with gauze clenched in a heavy clumsy hand.  It is out of our control, blindsides us, blocks our escape, forces us to endure the pain and fear.  And we do.  When it is finished, we sit there bewildered until we remember how to breathe again.   Real growth, meaningful growth, permanent growth can often happen no other way. 

If we had a choice, we would never choose some of life’s biggest moments.