"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

September 24, 2015

Koloa Landing



YES! This is ME! I won this trip last December! And the trip is planned for this fall!

People ask me, "How did you win that?" Well, my days are very slow, and I need quiet easy activities. Since I have felt so much better when in Hawaii, something many of us know as the "Location Effect", I started looking for trips to Hawaii to enter! I came across this one, and you could enter every day and get an extra entry for tweeting. So I did.

On Black Friday, I thought, "I should go check that contest page at Koloa Landing". I couldn't believe my eyes!! In fact, until they emailed me, I only half believed it was really me!

Koloa Landing is in Poipu, Kauai. The pictures look beautiful! I can't wait to take my own pictures and share them with you. I'm sure they will treat us very well!

Whenever we travel to Hawaii, it is super low budget. No swimming pool, no resorts. We find the cheapest rental and cook all our own food. So a resort is going to be a REAL treat!!

Watch for pictures coming in the next couple months! For now, you can visit their website if you'd like to see it! Click here: Koloa Landing

September 20, 2015

Waves

The waves have been big lately. I haven't been able to eat for over 3 weeks. This is the worst gastroparesis flare I've had in many years! I know how to deal with a flare that lasts a week. Usually they last 2-5 days. It's hard not to focus on the waves and panic. In light of that, I thought this was a great video to share today.


September 14, 2015

Find a Way Through


"Acceptance doesn't mean resignation; it means understanding that something is what it is and there's got to be a way through it" ~Michael J. Fox

Loss... Grief... Accomodate... Acceptance... Embrace..

It's a continual cycle with this illness. It takes continual effort to work through the grief and get to a place where I can adjust and embrace. And then before I know it, I'm back at the beginning.

Loss... Grief... Accomodate... Acceptance... Embrace...

The number of days I can paint has greatly reduced in the last year. I've recently discovered how much I enjoy Instagram, and editing my photographs. The picture above is one of my edits. I've only just begun learning and I'm trying to win an ipad so I can do even more with my photos (there are lots of companies that host contests with ipads as the prize). It's all a part of choosing to accommodate to my losses, accept them and find a way through them. 

September 10, 2015

Return to blogger


Wow! I can't believe it's been 7 years since I moved my blog away from blogger over to Wordpress! When I moved, it was so that I could have a beautiful self hosted Wordpress blog and include aspects of a website on it for both my art and my journey blogs.

As the years went by, I have continued to decline both physically and cognitively. I switched from a self hosted blog to a free wordpress blog. That meant I couldn't sell anything or have any referral links. That was a little disappointing.

I was recently helping my husband create a blog for a year long project focused on marriage for our church. I discovered how much more I liked blogger now and decided to begin reworking my blog and move it back here.

And guess what I found? Wordpress and blogger are not speaking. Which means I can not import all those years of blogs.

So, as I start to blog here, I'm just going to republish posts that I want to save for posterity, or that I think might be beneficial to those who visit.

I'm not very consistent in my blogging lately because it's hard work to write and put together sentences and it can cause some PEM. I'll try to blog about that later. But for now, welcome back to my blog!

December 27, 2008

And the Show Goes On!!

"Winter Sunset"
(c) M Pruitt 2008

Hurray! There is still a ton of snow, and because they plowed our street we can't get the car in and out of the driveway without also shoveling. But the freeways are clear and Nutcracker is ON this weekend!!! Bill and I volunteered to help out on Tech crew because they are short quite a few people and many newbies are working tech.

It was a slippery ride down the side street to the theater yesterday, but we made it and had a long fun filled day.

I filled in for a missing dancer during the morning dress rehearsal for the Party scene. What fun to be on stage again. But after that, along with the rest of ACT I tech work in the wings, I felt like I'd gone to the gym twice! Thankfully, everyone could tell, and they moved me to the lightboard, where I can sit in a nice comfy chair and even put my feet up if needed. (pictures of me at the light board and headset coming tomorrow)

I spent several hours laying on the floor with my ipod, but I made it through the day and the first performance went very well, with one particular dancer looking absolutely awesome! (pictures coming tomorrow)

The biggest problem for me is this, uncontrollable, exercise intolerance. The new injections I've been doing the past two months have given me a little more energy and stamina, but my cells still don't seem to be able to handle physical exercise.

I'm going to do some research so I can write a knowledgeable blog on this concept of exercise intolerance, because I know that hardly any of you reading this can understand it. I even had a friend today - who has Chronic Fatigue Syndrome - say to me, "Well of course, in time, you will feel better after exercising."

That is sweet encouragement, but in my case, just not true. Unless we figure out the cause and treat the cause, I am never going to feel better after physical exercise. It's a very different thing than being "out of shape". That's why it's called "intolerance". Not everyone who has ME/CFS also has exercise intolerance, but there is some excellent research proving how the body reacts differently to exercise in a subset of ME/CFS compared to normal people who are out of shape. I obviously fall into this subset.

Thankfully, we were able to come home early today and I am about to put on a horse movie I got for Christmas and just relax. (Hopefully I can stay awake until bedtime... we picked up hamburgers on the way home and I fell asleep in the car waiting for Bill to bring them back out to the car!)

With all this snow, I keep painting snow scenes... go figure! The painting up above is an ACEO that is currently for sale in my Etsy store (click here)
I hope you'll come by tomorrow and check out some of the pictures I have to share from Nutcracker!

Many blessings to you all at the during this last week of 2008!