Monday, March 2, 2015

im.back

So,.I've been feeling.the need.to.write/keep.a.journal.for.a very long.time.  so.here goes. .last night I.happened upon my.good.friend/neighbor in west Jordan that.died of.scleroderma.4.years ago.  I.always read her posts, but my reaction was quite different this time.around.  I.didn't know.she.had.the.same.specialist I have.  Dr.Frech had.just.begun her practice.when Cathie.got.sick,.so.I.believe.she.only.had.her.the last.several years.  It's.really kind.of.weird reading.my.future.  it's different for.everyone, each.having our.own experience...she.was.fortunate.that.she.didn't have.depression.  I wish that would go away forever.  I'd pound my depression out and.leave it on my running trails.

Different than Cathi, was her need for connection.  She loved visitors and.she had many.  I'm just the opposite .  In fact, prefer being alone.  I'm isolating a.lot.  I be.perfectly happy listening to music staying in my pj's all day.  Ill get some things done but in small increments, as.I run out of energy.  Energy.  It's not really energy, it's more like oxygen.  My muscles use their supply up.  Then I reboot and try again.  I dread taking showers.  My stats drop a lot.  I have to.psych myself.up, for.hours.sometimes.  then add doing my hair.  For some.reason,.showering exhaustion is.a.commonality among us with.low oxygen, something.about.lifting.our arms.above our.hearts.

Well I've put.off.showering.since.10 this.morning.  I'm going with my mom and.sis.to.the.doc.  for.my.mom or.I'd.still.be.sitting here.  Take.that.back.  I'd be.sleeping.
Time to.get moving!

Tuesday, March 20, 2012

2 years..

It's been just over 2 years since I got on oxy. You'd think we'd be good friends by now. But really, I hate Darth more than ever! I've been going without it a lot lately pretending I don't need it. I keep my oxcimeter with me all the time to measure my stats. And than I'm shocked when my saturation has dropped and I'm out of breath and energy.

i think its strange that I'm having a harder time now than ever before. Mentally that is. Come on. This is what I do now. It's OK. I just don't know how to be sick. You'd think I'd figure it out after 21/2 years. And longer really.

The day is beautiful! I'll go for a walk. That is the best medicine of all.

Tuesday, February 7, 2012

In the arms of angels

As this horrible news is unfolding of the little Powell boys, my heart is so deeply troubled, saddened, sickened, etc; there are not enough adjectives to describe how we all feel I'm sure. They were exactly Tolman and Addi's age, 7 and 5. I love Tol and Addi with more than my heart can hold. I love Jami, Jessica, Chelsea, Nils and Curtis with that same heart. And Ron. How much love can one heart hold? I often wonder how God can love me as much as He does when there are so many to love, and so many with HUGE problems. But then I see how many my mere mortal heart loves and I start to understand, just a little.

My heart is so heavy for the parents and grandparents of Susan and these angel babies. I've prayed for them and will continue to, and all the other family, friends and neighbors who knew them intimately.

I am forever grateful to my faith in the fact that they were taken in the arms of their loving angel mother, and Brother, our Savior Jesus Christ in their time of terrific horribleness. I'm sure they were not left alone. I'm sure there were angels "round about them to bare them up".

Tuesday, January 31, 2012

Renoir

The following is from Music and the Spoken Word given last Sunday:

Have you ever seen a painting by the artist Renoir—in a museum, perhaps, or in a book of impressionist art? We marvel at the beauty he captured, the sudden burst of color in a portrait, the serenity of a French meadow scene.

But as famous as Renoir is, few people realize that he painted much of his work in excruciating pain. Renoir was so crippled with rheumatoid arthritis that he had to sleep with a wire contraption that kept his sheets from touching his body. His deformed hands had to be wrapped with gauze; otherwise his fingernails would grow into his flesh. He couldn’t even pick up a paintbrush. And yet he would sit before a canvas in his wheelchair, have someone wedge a brush between his claw-like fingers, and paint visions of joy and delight.

It’s easy to see why Renoir’s illness is not well known, because not a shred of bitterness or despair appears in his work. Renoir was the model of a cheerful attitude, saying, "The pain passes, . . . but the beauty remains,”1 and "One must from time to time attempt things that are beyond one’s capacity.”2

On rare occasions we meet someone like this—a person who is in great personal pain but somehow manages to be joyful, even vibrant. We stand in awe of such people; they refuse to focus attention on themselves but instead inspire us to rise above our own sufferings and create beauty for those around us.

The next time someone asks, "Have you ever seen a Renoir?” you might think of a beautiful painting, but you might also think of the Renoirs you know—the everyday people who teach us, by their remarkable example, how to forget our own problems and focus on what we can do to bring joy to others. (End quote)

I want to be a Renoir.... Yeah. Just think I came up with a New Year's Resolution.

Wednesday, January 25, 2012

Lard butt!

I went to a beautiful cabin last weekend, one of those girl get-away things. There was old woman Shar with 3 other girls half my age. I love these gals! They make me feel young? but mostly they make me feel a part when I could be rather lonely. Most everyone in my neighborhood are 30 somethings.

Erica was asking me about being sick, which I really appreciated. She really wanted to know the deeper meaning than, How are you? It came up in the conversation that I have lost between 40 and 50 lbs since this whole thing started, not on purpose I might add. (I know! Can you freakin believe that!) Then she said, Didn't you used to weigh around 300? Hell no! Not even close! Did I look like I did? Erica, (While we were both laughing while a tear or two trickled down my chubby cheeks). I'm so sorry! I have no concept of weight. Me. Yeah, but 300?! Have you ever watched biggest loser?! THEN the snowmobile gets stuck.. Shar why don't you get off and walk and we'll meet you at the top. K. It was only a few feet, but the snowmobile wouldn't move till lard butt got off!

Oh no, I'm not finished yet. I get to Curtis' B ball game. One of the mom's comes up to me, I'm having this really fun party Wed night and want you to come. Are you busy? I always hate those questions. It depends on what the deal is if I'm busy or not. Just tell me up front. Sure enough, it was for some weight loss thing.

First of all, NO! I don't want to come! Why didn't you ask the fat man sitting a few rows in front of me? Or, Second of all, Don't EVVVVVERRRR ask ANYONE whose nose has some plastic tubing attached if they are interested in losing weight. There just may be a health issue involved. And with that health issue comes medicine. Lots and lots of medicine. One of those being prednisone. Take a moment to look up the side effects of this miracle drug from hell. It is quite a miracle that I have lost any weight being on that for as long as I have. And will be for the rest of my life, whatever that may be. Third, You will have a much better time selling a weight loss product if you FIRST have lost the weight you lard butt!

Geeish! I'm going to go have a cookie, or dozen.

Tuesday, December 6, 2011

Music is ringing inside my head

Music is ringing inside my head
over and over and over again
my friend,
there's no end
to the music...

These are some of the words from a song by Carole King, I think. Loved that song! I need to go find it.. And all my piano students' pieces are ringing over and over again in my head. My recital was last night. All the kiddos were AMAZING, FANTASTIC, INCREDIBLE, FABULOUS,...you get the picture. They all had on their Sunday Christmas best. They gave me hugs. I hugged them back. I wanted to hug all the parents, incredible parents! and g-parents. The students were so proud. I was so proud. Everyone was proud. Everyone cheered, and I mean REALLY cheered for everyone else. I had just as much fun watching the parents as I did the kids. I had tears in my eyes the whole time. I couldn't believe how hard they had all worked and that all that hard worked paid BIG TIME! I love you my kiddos! Thank you for doing such a great job!

And Santa came. Who knew? He, K, I mean she, played Sleighride with me. I love that Santa. She's my first cuz and we have been the best of friends forEVER! We lined her up with one of Ron's best friends so we have been great couple friends for..well, a really long time. She lives to serve other people. Love you Krissy!

And my sweet Ron and Curtis came to support me. Really? What 17 yr old goes to their mom's piano recital? Icing on the cake, I sat at the piano and played for Curtis while he sang and sang when we got home. Perfect night if you ask me.

So, grab those CD's, crank up the stereo...keep the music playing and playing and playing.

I had my Christmas last night!


Friday, December 2, 2011

Mistletoe and holly berries

Wow-ah! Time to trim the tree. Get it out first, go chop it down, go to the grocery store...where ever, how ever we get our greenery. I have bins and boxes and more bins and more boxes of holiday cheeriness. I've collected so much over the years. I've gotten rid of a lot as well, but I still have too much. And I'm too tired.

As I was trying to make my house festive today, I dang well burst into tears. How, how in the world am I going to get the energy to get it done? And do I really need to? I still have harvest holiday on my porch, but I can't see it so it's not there. So I sat down, turned up the oxy and tried to get hold of myself.

What is with me? I have this internal ideal that says everything has to be the best. I am Jean Nelson's daughter in law you know. She was the queen of Christmas. She could stay up all night cooking, decorating, whatever, and go teach her 4th grade class the next day. She LOVED Christmas everything. People ask me if I am the house with the incredible porch. I say no, that's Emily's house. And my sister in laws. And I worked at Nordstrom and OC Tanner. They REALLY knew how to deck their halls. Of course they had unlimited help and budgets but I still think I can get the same look minus the budget or the bodies. I have stolen a few ideas.

But really. We all know it doesn't matter. Christmas isn't about all the glitz and glitter and holly berries.

On the other hand, is there anything better than laying under the fake Christmas tree with the fake snow in front of the fake fire reading a great fake book (on my kindle)? I say no. So, time to get moving. Let's get this done!